2018 C.A.R.E. Guide by SFNM Advertising

2018

C.A .R .E. CA

CANCER AWARENESS RESOURCE & EDUCATION GUIDE

Managing LIFE with Cancer Being a Caregiver Supportive Resources

Family & Friends Dynamics

Coping with Side Effects Handling Practical Items

and Tips & Testimonies from those who know! A publication of the

WHAT’S YOUR PERSPECTIVE

ON BREAST

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Why C.A.R.E.?

Dear Readers, First off, go ahead and take a deep breath... I want to apologize for you having a reason to read this. Secondly, thank you for being open to this guide and having an interest in confronting that “c” word in some way. From the moment cancer becomes a part of your life, your world may feel like it is overwhelmingly spinning. Know that C.A.R.E. was made with one main intention – to help slow those turns, all in one place, helping you realize that you are NOT ALONE in one place. Some of you might be experiencing cancer yourselves, or know somebody who is or was affected. Maybe you might even just be aware of the cause. No matter where you lie on this spectrum, this guide is for you. C.A.R.E hopes to educate the curious, comfort those battling, and helpfully open up a conversation about the disease and its impacts on so many. This magazine aims to make a caregiver feel relief, a helpless friend feel more confident, a family member feel more secure and anyone suffering to feel like they are understood. This magazine strives to put in print, the feelings that many might not be able to say out loud, or maybe even express a thought you felt you were the only one who had. Now, this guide will not replace the advice of anyone’s personal medical team, nor can it be a complete “manual” to cancer — we understand there can be no such thing. With that, though, you are invited to read C.A.R.E. from front to back or simply

skip to the sections or areas on the pages that best suit your needs. Let the testimonies and expert tips help communicate that no matter who you are or what your situation is, you have support. Know that there is a community out there full of people who care – and maybe even can relate in some form. This magazine is about something so much bigger than ourselves. It hopes to prioritze each other, a lifestyle that so many endure and a sentiment of compassion through it all. This effort would have never been possible without the work of so many: the collaborating nonprofits, the willing professionals, talented designers, helpful volunteers, and supportive community partners. The true heroes, however, are those that were willing to share their story for the betterment of others. For it is their candid and vulnerable contributions who made this resource possible. Truly. May this guide lead you to the knowledge, affirmation, confidence, and strength that you need to navigate this life...giving it your best. Hopefully you can find power from those who have or are walking in your shoes, or solace in a shared struggle - and if nothing else, let this reinforce that your story, feelings, fears, thoughts and future are all cared about. C.A.R.E. is for those who have been, who are, and those who will be affected by cancer. Thank you for reading. May you

find strength and comfort in your journey. Sincerely, Katty Lopez

-C.A.R.E was inspired by & written in loving memory of Ted S.Lopez-

What Cancer Cannot Do Cancer is so limited...

It cannot cripple

LOVE

It cannot destroy

PEACE

It cannot silence

COURAGE

It cannot shatter

It cannot kill

HOPE

FRIENDSHIP It cannot suppress

It cannot steal

FAITH

MEMORIES

ETERNAL LIFE

It cannot corrode

It cannot conquer

It cannot invade the

SOUL

THE

SPIRIT

Author Unknown

2018

2017

CCA .E. . C. A . A.R R .E

CANCER AWARENESS RESOURCE &&EDUCATION GUIDEGUIDE CANCER AWARENESS RESOURCE EDUCATION

MAIN CONTRIBUTORS (in alphabetical order)

PUBLISHED FEBRUARY 25, 2018

Managing Owner LIFEMartin Robin Publisher withwith cancer Tom Cross Cancer

LIVING Cover

Elspeth Caring forHilbert the Caregiver

Being a Caregiver

ADVERTISING DEPARTMENT C.A.R.E. Project & Manager & Copywriter Family Friend Creative &Supportive Marketing Manager Dynamics Resources Kathryn Lopez C.A.R.E. Lead Designer Family &and Resources Joan Scholl

Friends Supportive Senior Designer Dynamics Elspeth Hilbert Services

Layout/Designer Rick Artiaga C.A.R.E. Copyeditor Jeff Acker ADVERTISING SALES Advertising Manager Wendy Ortega Deb Meyers Chris Alexander Mike Flores Dana Teton Eileen Richardson Carol Wagner CLASSIFIED ADVERTISING SALES Classified Sales Manager Laura Harding

TOG

American Cancer Society with Conklin, Communications Manager R • LOBrittney V

ETHE

E • STRENGTH • LIF E

Cancer Foundation for New Mexico with Ronni Levine, LMFT, Support Group Facilitator Cancer Services of New Mexico with Stephanie Michnovicz, LIPA Program Manager CHRISTUS St. Vincent Holistic Health & Wellness Center staff CHRISTUS St. Vincent Regional Cancer Center staff

SOURCES:

American Cancer Society, cancer.org, CHRISTUS St. Vincent Regional Cancer Center, National Cancer Institute, CHRISTUS St. Vincent Marketing Dept., Cancer Foundation for New Mexico, Cancer Services of NM, CHRISTUS St. VincentCoping Holistic with Health & Wellness Center, cancer. net, nmcancercare.org, New Mexico Cancer Care Alliance, Hereditary Side Cancer Assessment Program, NMEffects Department of Health, New Mexico Council on Cancer,National Institutes of Health, Cancer Services of NM/ Handling Practical Items Hematology Oncology Associates, My Care Plus, testimonies from those affected by cancer, simplehealth.com, Cooking through Cancer, www. heart.org, cancer.net, Comfort Keepers,Balancing Presbyterian Medical Services, CHRISTUS St. Vincent Sports Medicine, Gloria Media & Supportive Care a Career Tips & Testimonies Team at the Presbyterian Cancer Network, Lance Armstrong Foundation, from those who www.theatlantic.com, www.asco.org, A National Action Plan for Cancer Side Effect Management Survivorship: Advancing Public Health Strategies,Dr. Jean McDougall, know! UNM, CHRISTUS research,Surviving www.pancan.org, www.livestrongcareplan. & Thriving Cancer Aorg, publication of theServices of NM, Jesse and MacKenzie Allen, Leukemia Lymphoma Society,from www.refugeingrief.com, www.themighty.com, Tips&and Testimonies Those Who Know www.cancersupportnow.org for more programs and organizations, St. Vincent Hospital Foundation,toAmerican Society of Clinical Oncology’s coupons use locally! Advanced Cancer Care Planning, NM Dental Foundation, caring.com, “Passages in caregiving”, “Things I wish I’d known” by Deborah Provided by the Managing Santa Fe New Mexican J. Cornwall, “Caregivers Guilt,” by Vicki Rackner, M.D., Shasta Nelson, author of “Friendships Don’t Just Happen,” and the CEO of GirlFriendCircles.com, “44 Ways to Make the Day of Someone with Cancer” by Alana Miller, Cuddy & McCarthy Law Firm, www. nmcancerhelp.org, www.bewellnm.com, CancerCare Connect, NM Department of Veteran Services, helpguide.org, patientresource.com, verywell.com, National Cancer Institute

PLUS

and

Sandra Jaramillo Elizabeth Carter Charity Valdez

ADDRESS:

PRODUCTION

Office: 202 E. Marcy St. Hours: 8 a.m.-5 p.m. Monday-Friday advertising@sfnewmexican.com

Production Director Tim Cramer CIRCULATION Circulation Director Michael Reichard

For copies or details on this magazine, call 505-690-6308 or email care@sfnewmexican.com

careguide.info

2017 2018

C . A .R .E. CA

CANCER EDUCATION GUIDE GUIDE CANCER AWARENESS AWARENESS RESOURCE & EDUCATION

WHY C.A.R.E.?

Know the purpose and mission of Managing the C.A.R.E. guide. LIFE Navigating LIFE is Power Knowledge with a diagnosis Get informed on the basics of cancer, statistics, with facts and other information to help you feel Cancer empowered. Caring for the Caregiver 6 11 13 15 20

Cancer 101 Myths vs. Facts Supportive Preventative Habits Programs Being a Early Detection Caregiver Stats Sheet Family & Friends

The Journey Dynamics

Supportive From diagnosis, to treatment and side effects â&#x20AC;&#x201C; Resources explore the life of one who is affected Balancing by cancer.

22 26 31 33 38 40 45 48 53 58 59

Career + Beginning Family & the Journey Cancer Your Healthcare Family Friends Know Your Options Dynamics

Self-Care Let these tips, programs and support services help you invest in your well-being. 74 Comfort and Confidence 79 Shopping with Ease 83 Body, Mind and Soul Therapy 89 The Palliative Path

Relationships & Support

Feel more confident in your approach to relationships in your life.

91 97 101 105 107 110 116 122 126

Caring for the Caregiver Spousal Relations Talking with Your Child Viewpoint of Your Child A Young Diagnosis Family Dynamics How to Help Coping with Focus on Friendships Side Effects Navigating Grief Surviving &Items Thriving Tackling Practical Handling Practical Items

PLUS

Living with Cancer The Treatment Process Managing Side Effects From employment to advanced directives, Fight Fatigue and Chemo Brain Financial Resources take care of business with the help of Fueling with Food resources and experts. Side Effect Management Surviving and Thriving 131 Cancer Costs Tips Testimonies Tips & Testimonies from those & who have lived it Cancer... Again 136 Cancerfrom + Career those who Found in the Fight 141 coupons Handling Insurance toHealth use locally! know! Programs & Resources 144 Planning Through the Pain Learn about the professionals, local programs 149 ofProvided Hospice A publication theHearing by the Santa Fe New Mexican and resources who can assist you as you

usinesses

A.R.E. E.

and

navigate cancer.

61 64 66 70

Helping You Along Gain Support In Collaboration with Get Connected Programs and Assistance In Collaboration with

In Collaboration with C.A.R.E. was made in collaboration with:

Community

Stay informed on local opportunities and efforts in bringing awareness to the cause.

151 155 158 159 160

Volunteer for the Cause Save the Date Cancer in the Capitol Findings for the Future Thank You Local Partners

Coupons

Enjoy useful local coupons.

161 Coupons

Give back to these nonprofits by donating online at

careguide.info

KNOWLEDGE IS POWER: Cancer 101

Cancer 101

Three out of four people will know someone affected by cancer in their lives. While, this may bring a sense of familiarity, it doesn’t mean that all are confident in their knowledge of the disease. Although cancer is prominent in society, uncertainty and questions regarding the basics of cancer remain. Learning and understanding more about cancer can potentially help clear up confusion and misconceptions.

What is cancer? Cancer is the umbrella term for a group of more than 100 different diseases. The body is made up of trillions of living cells. Normal cells are generally dominant, growing, reproducing and dying in an orderly way. When abnormal cells — which are always present — begin growing rapidly and invading other, normal cells, the process we call cancer begins. Essentially, cancer occurs when an abnormal type of tissue in your body begins to grow, spread and compete for resources. These cells then invade the normal cells and tissue.

Oncology is the branch of medicine concerned with the diagnosis and treatment of cancer.

DNA is in every cell and it directs all of a cell’s actions. When DNA in a normal cell is damaged, the cell either repairs the damage or dies. In cancer cells, damaged DNA is not repaired. The cell doesn’t die, but goes on to make new cells that reproduce the same damage. Although DNA damage may result from something obvious, like cigarette smoking or sun exposure, it is rare to know exactly what caused any one person’s cancer. Cancer is always named based on the place where it started. So colon cancer that has spread to the liver is called metastatic colon cancer, not liver cancer. In this case, cancer cells taken from the liver would be the same as those in the colon, so they would be treated in the same ways. The same is true for breast cancer that has spread to the bones, for example, it is always called breast cancer. Different types of cancer can behave very differently, so there are different forms of treatment for each variation. A person’s cancer care team will discuss the treatment options for each person.

Types of cancers Carcinomas

Most cancers are carcinomas (i.e. breast, lung, colon). They begin in the lining layer of organs and may invade surrounding tissues, organs and lymph nodes.

Sarcomas

Sarcomas grow from cells in supportive or connective tissue in the body (i.e. bone, joints, fat, nerves, cartilage, deep skin tissues and blood vessels). These account for about one percent of all cancers.

Melanomas

Serious forms of skin cancer that appear on the surface of the skin.

Hematologic (blood) cancers

Hematologic cancers primarily affect blood, bone marrow and lymph nodes, and may or may not create an actual tumor.

Leukemias

Leukemias are immature/ abnormally large cells arising in bone marrow; they block the production of normal white or red blood cells.

Every cancer is associated with a ribbon of a certain color – lavender represents ALL types of cancer.

Lymphomas

Cancers that begin in the lining layer of organs are lymphomas. They can invade surrounding tissues and organs and spread to the lymph nodes.

Myelomas

Abnormal cancerous plasma cells inside bone marrrow are myelomas. They produce too much of the same antibody, which accumulates in the blood and may primarily affect the kidneys.

C.A.R.E. – 6

SCANS & IMAGING

Imaging is used to make pictures of internal body structures.Those tests are used to help detect, stage or monitor cancer.The type of scan or test used depends on the type of cancer, area of the body and discretion of the medical oncologist/ radiologist. BIOPSY The doctor takes out a small piece of the lump to check it for cancer cells.There are many ways to do a biopsy.The type used will depend on the size of the lump and where it is in your body. CT (CAT) SCAN Uses X-rays to make detailed pictures of the inside of your body. ENDOSCOPY A thin, lighted tube is put into your body through a small cut in the skin or through a natural opening, such as the mouth, to look inside.This enables the doctor to look at the tumor and other nearby body parts. LAB TESTS Blood and urine tests can be used to help find some types of cancer.They can also be used to find out how well your body is working.

C N A GL

A AT MRI Uses radio waves and strong magnets instead of X-rays to make detailed pictures of the inside of your body. PET SCAN Uses a kind of sugar that can be seen inside your body with a special camera. If there is cancer present this sugar shows up as “hot spots.” ULTRASOUND OR ULTRASONOGRAPHY– A small wand is moved around on your skin. It gives off sound waves.The echoes off the tissue are made into a picture on a computer screen. X-RAY A form of radiation that may be used at low levels to make an image of the body, or at high levels to kill cancer cells.

Cancer stages “Staging” is an estimate of the extent of the cancer based on physical exam, biopsy results and imaging tests. It’s the essential step in determining if a cancer has spread and how it will be treated. The “TNM staging system” is used most often and typically based on three key pieces of information: T = main tumor (its size and/or whether it has grown into nearby areas); N = whether the cancer has spread to nearby lymph nodes; M = whether the cancer has metastasized to other organs of the body. Letters and/or numbers after the T, N and M give more details about each of these factors. To make this information clearer, the TNM descriptions can be grouped together into a simpler set of stages, labeled with Roman numerals (usually from I to IV). In general, the lower the number, the less invasive the cancer. A higher number designates a more advanced cancer. 0 is cancer in which cancerous cells have not invaded neighboring tissue. Some cancers never progress beyond this stage.

I is localized cancer, in which a single tumor has crossed the cancerous cells’ membrane.

II is cancer in which the tumor has spread to nearby tissue but has not spread to lymph nodes.

III is cancer in which cancer cells have reached nearby lymph nodes and may have traveled into the bloodstream.

IV is metastatic cancer, in which the cancer cells have entered the bloodstream and spread to distant organs.

Factors of treatment P

Type of cancer P Stage of the cancer P Person’s overall health P Likely side effects of the treatment P Chance to relieve symptoms or extend life P The probability for controlling or curing the cancer C.A.R.E. – 7

SCOTT HERBERT, MD

A Dose of Info

MEDICAL ONCOLOGIST A CLOSER LOOK AT MEDICAL ONCOLOGY

from The Pros

ON STAGE & PROGNOSIS

These numbers are all averages; some people do worse and some do better. These numbers NEVER actually reflect the patient that we’re seeing in front of us. Yes, it’s very difficult to dwell on learning your diagnosis is Stage IV, but there are so many wonderful things that people miss when they focus on the future. That’s another reason to reach out to the social worker, support groups or the patient navigator. People really need help focusing on the present. ON WHAT HE HAS WITNESSED FROM CANCER

Human beings are at their best and most wonderful when they are facing adversity. People don’t always cherish life and their loved ones until they are faced with serious illness or death. I’ve been privileged to see humanity at its absolute best. To learn more from & about Dr. Scott Herbert of CHRISTUS St. Vincent Regional Cancer Center, visit careguide.info

Treatment options Surgery, chemotherapy and radiation are the three main types of cancer treatment. Any of these, alone or in combination, may be the best treatment. Some chemotheraphy and radiation can only be done once. Therapy can either help control the cancer OR cure the cancer. It’s important to know the difference.

Surgery

A port is a central line that is surgically implanted under the skin of the chest to provide access to administer IV medications into a large vein.

This is not always the first treatment for removing cancer from the body. Sometimes only part of the cancer may be removed. Your cancer care team will work together with you to personalize the treatment regimen which best suits your diagnosis. Radiation or chemotherapy might be used to shrink the cancer before or after surgery.

Chemotherapy

“Chemo” works to kill cancer cells with medication. Usually the drugs are given intravenously (IV, or into a vein) or taken in pill form. These drugs travel throughout the body via the bloodstream. They can reach cancer cells that may have migrated away from the tumor.

Radiation Therapy

This treatment uses high-energy rays (X-rays) to kill or shrink cancer cells. The radiation may come from outside the body (external) or from radioactive materials placed right into the tumor (internal or implant radiation). External radiation is much like getting an X-ray. It does not physically hurt, but may cause side effects.

Hormone Therapy

This is sometimes used to treat certain kinds of prostate and breast cancers.

Targeted Therapy

This type of therapy works directly on your cancer’s genes/proteins to block it from spreading. C.A.R.E. – 8

IMMUNOTHERAPY Also known as “biologic therapy” helps repair or stimulate a person’s own immune system to find and destroy cancer cells the same way it fights off foreign bacteria. Checkpoint inhibitors are a recent development that aim to utilize a patients own immune system to attack cancer cells. If the body recognizes a tumor as foreign, then the goal with immunotherapy is to improve immune-detection and destruction of tumors.

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Historically, cancers that are more differentiated and have more mutations have been more aggressive and more resistant, as they don’t respond to common treatments. The benefit of immunotherapy is that it enables the immune system to recognize specific mutations. A checkpoint inhibitor is a type of immunotherapy that activates the immune system to recognize and destroy cancer cells . TOP 3 TERMS TO KNOW: 1. Cancer immunotherapy: Treatments that use the immune system to fight cancer. Some boost the immune system in a general way, while others help your body attack cancer cells. 2. Antigen: A part of a cell, such as a protein, that raises a red flag for your immune system. 3. T cells: Immune cells (white blood cells) that roam the body to find and destroy other cells that don’t belong.

If a word that you don’t understand is stated in an appointment– always ask for clarification. Know that you are not expected to know all of the terminology associated with cancer.

Cutting-edge research is vital in order for us to identify more targets and develop new therapies that will hopefully lead to new and more effective treatments.

MATT JACKSON, MD

RADIATION ONCOLOGIST

ON NEW ADVACNCES

A Dose of Info from The Pros

We have just started some very cool technologically-advanced programs here in Sante Fe. This includes stereotactic body radiation therapy - a type of “radiosurgery” that can cure lung cancer and treat other tumors in as few as three treatments, with minimal side effects. Also, we have started a program using deep inspiration breath hold for left-sided breast cancer patients. This even further minimizes the radiation dose to normal tissues within the chest, such as heart and lung. RECOMMENDATIONS FOR PATIENTS Communication and optimism are so important. I emphasize an open dialogue with my patients and their families so that we can come up with a treatment plan together that everyone can get behind. If we communicate effectively, we can take care of small issues before they become big problems. This wll help ease the anxiety that is so often related to a cancer diagnosis.

To learn more from & about Dr. Matt Jackson of CHRISTUS St. Vincent Regional Cancer Center, visit careguide.info C.A.R.E. – 9

Glossary When it comes to cancer, the vocabulary used may seem foreign. Getting familiar with basic “lingo” can help to prevent even more confusion by allowing a deeper understanding of the concepts related to the disease. ANEMIA A condition that develops when your blood lacks enough healthy red blood cells or hemoglobin.

NODULE A small, solid lump that can be felt or seen on an imaging test.

BIOMARKER Substance made by cancer cells (and sometimes normal cells), used primarily in testing for clinical trials. It seeks to determine how aggressive a tumor is and can also evaluate the efficacy of treatments.

NEUTROPENIC FEVER Results if the person’s immune system is heavily weakened (white blood cell count is low).

BIOPSY The removal of a piece of tissue from a person’s body so that a doctor can look at it under a microscope to see if cancer is present, and identify where it may have originated. COMPLETE BLOOD COUNT CBC A count of the number of cells in a given sample of blood. Red blood cells (hemoglobin, hgb), white blood cells and platelets are most often counted for this lab test. DIAGNOSIS A disease is diagnosed by its signs or symptoms, and by information from imaging tests, lab tests or biopsy. For most types of cancer, a biopsy is needed to be sure of the diagnosis. IMMUNE SYSTEM The complex immune system helps the body resist infection from bacteria or viruses and rejects transplanted tissues or organs. The immune system may also help the body fight some cancers. LESION An area of abnormal body tissue, which may be a lump, mass, tumor, spot or change in the way the skin looks or feels. LYMPH NODE A small, bean-shaped collection of immunesystem tissue found throughout the body. Lymph nodes remove cell waste, germs and other harmful substances from the body. Cancers often spread to nearby lymph nodes before reaching other parts of the body. METASTASIS The process of cancer cells spreading to other parts of the body.

PHOTOCOAGULATION OR PHOTOABLATION This process uses a laser beam to heat up and kill cancer cells. It is most often used to relieve blockages caused by tumors rather than to cure cancers. PROGNOSIS A prediction of the course of the disease; it also describes the outlook for the chances of survival. POLYP A growth from a mucous membrane commonly found in organs such as the rectum, the uterus, and the nose. Polyps may be cancerous or benign. RESECTION Surgery to remove part or all of an organ or other structure. TERMINAL Generally understood to mean that the disease cannot be contained or cured. TRANSFUSION Blood or blood products given into a vein (intravenous or IV). Most are taken from unrelated donors and tested for disease before use. People can donate their own blood ahead of time to be given during certain planned surgeries or procedures. TUMOR A tumor is an abnormal lump or collection of cells. Tumors can be benign (noncancerous) or malignant (cancerous). WHITE BLOOD CELLS Blood cells that help defend the body against infections. There are many types of white blood cells. Certain cancer treatments may reduce their quantity and make a person more susceptible to infections.

C.A.R.E. – 10

For more terms to know visit: cancer.org/cancer/cancerglossary/index

There are so many preconceived notions and general misconceptions about cancer, its effect on people, how it impacts things, etc. It is best not to believe everything you read or hear. In any situation, especially one as misunderstood as cancer, learning the truth about common myths can be a form of empowerment for you or someone you care about. Cancer and its treatment will always make you feel sick. You can’t go out in Even if two people have the same public, exercise or eat what you want. You type, stage and treatment, they will vomit a lot too. will not have the same experience. There are so Sometimes many variants that determine treatment, care and chemotherapy can overall experiences for people. cause side effects, the most prominent being fatigue. Cancer You can’t be around other people can make people feel bad; when the when undergoing treatment. cancer is treated, people can feel better. There are a number of medications and Your healthcare team will guide you with regard to infections and complementary treatments that can help mitigate the side effects of chemotherapy. discuss potential interactions/exposures. Everyone with cancer has the same experience.

Everyone who gets cancer dies. The most recent available data shows that about 68 percent of people diagnosed with cancer are still alive five years later. Even among those who are not cured of cancer, many can go on living for some years, although there will be changes in their lives. For these people, cancer can be a lot like diabetes or heart disease – a chronic illness that’s mostly controlled with treatment. Once people get cancer they automatically go to a hospice or home-care facility. Today, families provide about 80 percent of home-care services. When cancer spreads to the bones, it becomes bone cancer.

Everyone with cancer loses their hair. Hair loss is a chemotheraphy related side effect. Many do experience this side effect, but not everyone. Chemo is poison and is only given through infusion. Chemo is not poison and can be given as a capsule as well. Everyone’s caregiver is their spouse.

Sometimes children, siblings, parents, neighbors, friends or others will serve as Metastatic cancer in any other location does not change the type the primary caregiver. of cancer. Breast cancer spread to Do not believe everything you read the lungs is still breast cancer. online about your cancer. Know that blogs are very subjective, as well, Cancer causes pain. and if you want to supplement your Not always, and not for the same medical team’s information with your own research, ensure that the site is reasons. Some people have pain reputable. (See pages 66-67) because of the growth of a tumor or as a result of advanced cancer, while others may have pain from surgery or the side effects of treatment. C.A.R.E. – 11

KNOWLEDGE IS POWER: Myths vs. Facts

Myths vs. Facts

Treatment is always about curing the cancer. Some treatments are not meant to be curative, but rather to control the cancer.

Sugar causes cancer. All cells need sugar as fuel and there is no evidence that sugar causes cancer cells to grow. A healthy, well-balanced diet is always recommended, however.

Cancer is contagious.

There are specific stages of grief that everyone goes through when they experience a loss.

Simply stated: No, it’s not. If cancer is stage I or II it’s not a big deal. Just because a person’s cancer case isn’t at an aggressive stage or terminal does not mean it’s not traumatic. If cancer is stage III or IV there is no hope to be cured. Not necessarily. More advanced or metastatic cancers are more difficult to cure or contain, but it is not always impossible to be cancer-free after a stage III or IV diagnosis. If I don’t acknowledge that my friend or their loved one has cancer, they will be grateful I didn’t make them think about it. You can never “remind” someone of a cancer diagnosis, as it affects them every day. Some people would feel offended if their friend doesn’t acknowledge their diagnosis, while others would be unaffected. There is no one way to act toward a loved one. Everyone will have different preferences as to how they feel supported. Palliative care and hospice are the same thing. Hospice care provides humane and compassionate “comfort care” for people in the last phases of an incurable disease. Palliative care, however, is focused on improving the quality of life for those people with serious illness. Palliative care can coexist with treatment; hospice care cannot.

There are no stages of grief. Grief comes like an uncontrollable wave, sometimes totally engulfing one, other times just as a ripple — and everything in between. The stages people talk about are based on Elisabeth Kubler-Ross’ book on death and dying, but she explained later in her life that everyone experiences grief in their own unique way and that the “stages” were misinterpreted. Counseling is only for those with mental health issues. Seeking counsel from a professional may be necessary to help you or your loved ones navigate through all of the emotions a cancer diagnosis brings. Many use counseling as therapy for the mind and spirit, while medications aid the body. Being “strong” during cancer means you are always positive and appear unaffected by the diagnosis. Being “strong” is subjective. To some people “being strong” means not to cry or show emotion. To others it means to be organic with their feelings. Strength is all relative to the individual. You’re only considered a “survivor” if you are now cancer-free.

Massages can spread my cancer to other parts of my body.

Cancer cannot be spread through massage.

For facts vs common myths online from the National Cancer Institute,

visit careguidemyths.info C.A.R.E. – 12

Unfortunately, there are no one-hundred-percent guaranteed actions that will prevent cancer. However, there are healthy lifestyles, appropriate screenings and habits to maintain that can actively minimize a person’s chances of developing cancer or other diseases.

What to do Stay away from tobacco There is no safe form of tobacco. If you smoke or chew tobacco, stop! Call the American Cancer Society at 1-800-227-2345 for help, or download the free Quit For Life app in Google Play or the iTunes app store.

Limit alcohol Men should have no more than two drinks a day and women should have no more than one drink daily. A drink is 12 ounces of regular beer, 5 ounces of wine or 1.5 ounces of 80-proof distilled spirits.

Monitor weight Being overweight or obese raises the risk for many types of cancer.

Eat healthy Eat fresh fruits, vegetables and minimally processed foods. Save the sugar and high-fat foods for an occasional treat.

Exercise Adults should aim for about 2.5 hours of moderate exercise each week; children should get an hour every day. All ages should get strenuous exercise at least three times a week. Even if you exercise, try to decrease the length of time sitting during the day.

Use sun protection Wear hats, sunglasses, sunblock and protective clothing. Avoid artificial sources of UV light, including tanning booths.

CLARITY ON CARCINOGENS:

Substances that may cause cancer in some cases are known as carcinogens. Tobacco is the most well-known and confirmed carcinogen. Substances labeled as carcinogens may have different levels of cancer-causing potential. Some may cause cancer only after prolonged, high levels of exposure. And for any particular person, the risk of developing cancer depends on many factors, including how they are exposed to a carcinogen, the length and intensity of the exposure and the individual’s genetic makeup.

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If you find yourself wondering if something causes cancer, always assess your risks and rely on credible sources. When in doubt, discuss with a healthcare professional about the habit and your susceptibility. C.A.R.E. – 13

KNOWLEDGE IS POWER: Preventative Habits

Preventative Habits

Mindsets to avoid

Rationalized Avoidance

“I don’t need to get checked.”

No Symptoms or Family History

“I feel fine and no one in my family has had cancer.”

Negative Connotation

“Tests and screenings are invasive, unpleasant and will be embarrasing for me.”

Denial

No Doctor Recommendation

“My doctor hasn’t said anything, so I’m good.”

“It won’t happen to me.”

• We offer medical and dental services, to all. • We serve over 16,000 patients a year with nearly a third of them children. • Our mission is to foster community well-being in partnership with our patients by providing excellent, accessible, family-centered medical, dental and behavioral health care. La Familia Medical Center 1035 Alto Street 505-982-4425 Health Care for the Homeless 1532-B Cerrillos Road 505-988-1742 Dental Clinic 6401 Richards Ave. 505-984-5048 C.A.R.E. – 14

Southside Clinic 2145 Caja del Oro Grant Road 505-438-3195

To make an appointment: 505-982-4425

The best protection

Become familiar with your body, acknowledge when it changes and get a checkup. No one knows your body better You know your body best. than you. When cancer is detected early, the odds are much Do not ignore or put off any better for successful treatment, keeping it from spreading and sign or symptom – especially maybe even curing it. A primary care physician is critical in if it is getting worse or monitoring your health and helping identify any potential has lasted for health concerns. a long time. If you observe ANY kind of abnormality in your body, tackle this potential health problem right away and make an appointment with your physician.

Potential signs and symptoms Cancer causes a wide variety of signs and symptoms, depending on where it is in the body, how large it is and how much it affects different organs and tissues. Cancer is unpredictable. Sometimes signs and symptoms don’t show up until the cancer has spread and is pressing on nearby nerves or organs. If someone notices and remarks on changes in the way you look or act, take it as an expression of concern and determine if you should get yourself checked. If you have any of these symptoms, don’t panic – but DO see your doctor or nurse practitioner and ask for a thorough screening.

What to look for

Unexplained weight loss of 10 pounds or more Fever that lasts a long time Extreme fatigue, weakness or dizzy spells Unexplained pain anywhere in the body, such as a persistent headache Nagging cough or hoarseness Unusual skin changes, such as darkened, yellowish or reddened skin, itching or excessive hair growth

Recent color/size/shape change of a wart or mole Red or thickened skin on the breast Thickening or lump in the breast or other parts of the body Change in bowel habits or pain while urinating Indigestion or trouble swallowing Sores in the mouth or elsewhere that do not heal Any long-lasting mouth changes such as white patches or white spots on the tongue

Unusual bleeding or discharge Blood clots in the veins or legs C.A.R.E. – 15

KNOWLEDGE IS POWER: Early Detection

Early Detection

WHAT IS HEREDITARY CANCER?

E C N LA

A AT Hereditary cancer results from changes in genetic information that is passed from parents to their children. Individuals with changes in their genetic information have an increased risk of developing cancer. They may also pass the genetic risk on to their children. Approximately one in every 10 individuals with cancer has an inherited (genetic) form of cancer. Tests can be done to see if a person has certain gene changes known to increase the risk of cancer or other diseases. Such testing is not recommended for everyone; it is primarily for people with certain types of family history. Genetic risk assessment should be part of the genetic testing process. If you have immediate family members with cancer, If considering genetic genetic testing is an option to explore. testing, reach out to your insurance company to see if or how it might be covered. Most recommendations will come from the oncologist, if not addressed by the patient. Many variables are involved as to whether or not it is appropriate for an individual to consider genetic testing.

WHO SHOULD BRING UP GENETIC TESTING?

Recommended cancer screening tests You don’t have to have any symptoms or family history to feel the need to get screened for cancer. It is extremely important to be proactive and get screened based on the age recommendations.

20-65 years old

Get annual checkups that include discussions of tobacco use, sun exposure, diet and nutrition, disease risk factors, sexual practices and any exposure to dangerous substances at work or at home. Find out if you have a high risk of colon cancer because of family history, genetic disorders or other factors. Women ages 40 to 44 can start annual breast cancer screening with mammograms (X-rays of the breast) if they wish to do so. Report any changes in the way your breasts look or feel to a doctor or nurse right away. Find out if you are at higher than average risk for breast cancer. Get a Pap and HPV test done every three years until age 30, then every five years.

40-49 years old

Talk with a doctor about the uncertainties, risks and potential benefits of prostate cancer testing starting at age 45. Men with more than one close relative CHRISTUS St. Vincent Regional who has had prostate cancer before age 65 should talk with Medical Center provides a doctor about testing starting at age 40. mammograms, breast biopsies and other diagnostic cancer tests for Women ages 45 to 54 should begin having mammograms those who are uninsured and are every year. unable to qualify for other coverage. Contact one of the CHRISTUS St. 50-65+ years old Vincent Care Coordination nurses at 505-913-4256 to arrange for At age 55, talk to a doctor about your smoking history and information on how to apply. about a low-dose CT scan to screen for early lung cancer. Have a colonoscopy starting at age 50 if you’re at high risk and talk with a doctor about testing for prostate cancer if you’re at average risk. Start colon cancer testing at age 50 if you’re at average risk. C.A.R.E. – 16

Recommended screenings for sample cancers BREAST CANCER

• 40 to 44 should have the choice to start annual breast cancer screening with mammograms (X-rays of the breast) if they wish to do so. • 45 to 54 should get mammograms every year. • 55 and older should switch to mammograms every two years, or can continue yearly screening. Screening should continue as long as a woman is in good health and is expected to live 10 more years or longer.

PROSTATE CANCER TESTING

The discussion about screening should take place at: • 50 for men who are at average risk of prostate cancer and are expected to live at least 10 more years. • 45 for men at high risk of developing prostate cancer. This includes African Americans and men who have a firstdegree relative (father, brother, or son) diagnosed with prostate cancer at an early age (younger than age 65). • 40 for men at even higher risk (those with more than one first-degree relative who had prostate cancer at an early age).

COLON AND RECTAL CANCER

Starting at age 50, both men and women should follow one of these testing plans: TESTS THAT FIND POLYPS AND CANCER: • Flexible sigmoidoscopy every five years (if test is positive, a colonoscopy should be done) • Colonoscopy every 10 years, or • Double-contrast barium enema every five years (if test is positive, a colonoscopy should be done) • CT colonography (virtual colonoscopy) every five years. Do multiple stool take-home test. If test is positive, a colonoscopy should be done).

LUNG CANCER

Lung cancer screening is recommended for those 55 to 74 years in age who have at least a “30 pack year,” that is if the number of packs a day multiplied by the number of years they’ve been smoking equals at least 30. The Breast and Cervical Cancer Early Detection Program offers breast and cervical screening (BCC) and diagnostic services at no cost for women who are eligible. Contact: 1-877-852-2585 and nmhealth.org/about/phd/cdb/bcc for more information.

COMMIT TO THE 80% PLEDGE

E C N LA

A AT Screening can help find and prevent colorectal cancer. It is one of the most successfully treated cancers if diagnosed early. Through colorectal cancer screening, doctors can find and remove hidden growths in the colon before they become cancerous. Removing polyps can prevent cancer and save lives. The five-year survival rate is around 90 percent for colorectal cancers caught in their earliest stage. Members of the National Colorectal Cancer Roundtable (NCCRT), an organization co-founded by the American Cancer Society and the Centers for Disease Control and Prevention, are embracing a shared goal to increase the nation’s screening rate to at least 80 percent of adults aged 50 and older.

For more information, visit.nccrt.org C.A.R.E. – 17

Adding a Third Dimension to Mammography 3D mammography is an important technological advancement that can achieve earlier detection, reduce call-backs and improve the screening experience. Finding breast cancer at an early stage not only improves a woman’s chances for successful treatment, it may also help her avoid a mastectomy. Unfortunately for many women with dense breast tissue, achieving early detection with a traditional mammogram can be a challenge. “Up to 40% of women have dense breasts.” notes Dr. Margaret Gallegos, a radiologist and breast imaging specialist at Desert Rose Women’s Center at Santa Fe Imaging. “And a woman with dense breasts has up to a 6 times greater chance of developing breast cancer, as well as more aggressive forms of the disease.” Gallegos says that the fibrous tissue within a dense breast can conceal or “mask” some cancers, making it difficult to spot on the two dimensional images of a mammogram. But a new innovation in breast screening called 3D mammography (also known as breast “tomosynthesis”) is changing that. 3D mammography increases the cancer detection rate by about 40% over traditional mammography and significantly lowers recall rates.1 According to the American Cancer Society, 3D mammography has been shown to significantly improve the detection rate in women with dense breasts.

It can also find smaller and more invasive cancers earlier2, which is why so many hospitals and imaging centers are now adopting this technology. “Studies show increased detection of cancer with 3D mammography,” Gallegos added. 3D mammography is similar to mammography in that it uses x-rays to produce images of breast tissue. However, unlike 2D mammography, it captures multiple image segments or ‘slices’ of the breast, at different angles, and then reconstructs them into a three-dimensional image that is capable of showing more detail, and increases the ability to find smaller cancers that may be obscured by breast tissue. While most 3D mammography systems expose the patient to a higher radiation dose to obtain images, the GE Senographe Pristina™ 3D system at Desert Rose Women’s Center does not expose the patient to any increase in radiation over a 2D mammogram. The vast majority of doctors and advocacy groups that are most closely involved with breast cancer still firmly recommend that all women over 40 have routine screening mammograms.

no K

But while breast screening has been shown to save lives, critics of widespread screening with mammography have cited the high degree of false positives associated with the test, which could lead to unnecessary testing, as well as added stress and anxiety for the patient. 3D mammography has been shown to decrease false positives by 15%3 and has subsequently reduced the number of callbacks for additional testing.

C.A.R.E. – 18 C.A.R.E. – 40

wle dge

is Power

There’s another benefit of 3D mammography that will be welcome news for many. A 3D mammogram requires less compression and pressure on the breast to obtain images, which can reduce the discomfort associated with breast screening.

and breast MRI, both excellent technologies to help women achieve early detection. The tests (or combination of tests) that should be used depends on a woman’s individual risk factors, and she encourages women to talk to their doctors to determine both their risk and screening strategy.

Gallegos adds that although 3D mammography is vastly superior technology, it is by no means the only option for high-risk women and women with dense breasts. She says that Desert Rose Women’s Center at Santa Fe Imaging also provides Automated Breast Ultrasound (ABUS)

Skaane P, Bandos AI, Gullien R, et al. Comparison of digital mammography alone and digital mammography plus tomosynthesis in a population-based screening program. Radiology. 2013;267(1):47-56

Desert Rose Women’s Center

Durand, Melissa A et al; Breast Cancer Screening Using Tomosynthesis in Combination with Digital Mammography. JAMA 2014.6095.jama/10.1001:doi. 2507-2499: (24)311; 2014

A Better Option for Women in ALL Risk Categories Desert Rose Women’s Center Source: BreastCancer.org

A Better Option for Women in ALL Risk Categories SUPERIOR 3D TECHNOLOGY SUPERIOR 3D TECHNOLOGY 3D mammography 3D mammography achieves an up to achieves an up to 40% IMPROVED

40% IMPROVED DETECTION RATE DETECTION RATE

PATIENT-CENTRIC PATIENT-CENTRIC ENVIRONMENT ENVIRONMENT

% 40 40%

with 15% FEWER RECALLS with 15% FEWER RECALLS AND FEWER FALSE POSITIVES1

AND FEWER FALSE POSITIVES

and the LOWEST EFFECTIVE and theofLOWEST EFFECTIVE DOSE all tomosythensis DOSE ofcomparable all tomosythensis systems, to systems, 2D comparable standard FFDM.2 to standard 2D FFDM.2

HIGH RISK SPECIALISTS HIGH RISK SPECIALISTS

We are Northern We areMexico’s Northern New New Mexico’s leading radiology leading radiology team, including team, including DOCTORS

DOCTORS SUBSPECIALTY SUBSPECIALTY TRAINED IN TRAINED IN BREAST IMAGING BREAST IMAGING 99.3%% of our 99.3 of our patients WOULD patients WOULD RECOMMEND RECOMMEND us to their friends 5 us to family their friends and and family5

Approximately 40% OF Approximately U.S. WOMEN 40% HAVEOF

Diagnostic testing is Diagnostic testing is 30-60% LESS

30-60% LESSAT EXPENSIVE EXPENSIVE AT OUR CENTER OUR CENTER versus the same

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putting them at an up to 6X putting themCHANCE at an up toOF 6X GREATER

GREATER CHANCE OFCANCER, DEVELOPING BREAST DEVELOPING BREAST CANCER, as well as MORE AGGRESSIVE 4 as well asofMORE AGGRESSIVE FORMS breast cancer 4 FORMS of breast cancer

versus the sameat test performed test performed at a hospital. a hospital.

Only Desert Rose Women’s Center offers the Only 3Desert Rose Women’s Center offers TOP SCREENING MODALITIES FORtheHIGH RISK WOMEN TOP 3 SCREENING MODALITIES FOR HIGH RISK WOMEN Including: Including:

• 3D MAMMOGRAPHY • 3DAUTOMATED MAMMOGRAPHY • 3D BREAST ULTRASOUND3 • 3D AUTOMATED BREAST ULTRASOUND3 • BREAST MRI • BREAST MRI as well as their diagnostic counterparts. as well as their diagnostic counterparts.

www.santafeimaging.com www.santafeimaging.com 505.955.8794 505.955.8794 1640 Hospital Drive, 1640 SantaHospital Fe, NMDrive, 87505 Santa Fe, NM 87505

1. Skaane P. Bandos et al (reference on file) 2. GE screening protocol consists of 3D CC/MLO + V-Preview CC/MLO, V-Preview is the 2D synthesized image generated by GE Seno Iris mammography software from GE DBT images. FDA PMA P130020 www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfPMA/pma.cfm, Data on file. Average glandular dose in digital mammography and digital breast tomosynthesis: comparison of phantom and patient data. Bouwman, R. W. et al. 2015, Physics in Medicine & Biology, pp. 7893-7907. 3. Automated Breast Ultrasound in Breast Cancer Screening of Women With Dense Breasts: Reader Study of Mammography-Negative and Mammography-Positive Cancers. Maryellen L. Giger1 et al. American Journal of Roentgenology. 2016;206: 1341-1350. 10.2214/AJR.15.15367 4. Source: BreastCancer.org 5. Information on file, based on patient satisfaction surveys

C.A.R.E. – 19

2018 STATS SHEET 10 Highest Cancer Cases in New Mexico Breast

1470

Lung & Bronchus

1090

Prostate

960

Colon & Rectum

800

Skin Melanoma

500

Lymphoma Non-Hodgkin

410

Urinary Bladder

390

Leukemia

360

Uterine Corpus

340

Uterine Cervix

200

400

600

800

1000

1200

1470

The overall estimate of 1,735,350 cases for 2018 equals more than 4,700 new cancer diagnoses each day. The Most Prominent Cancer by State - Breast vs. Lung

Lung cancer is by far the leading cause of cancer death among both men and women Each year, more people die of lung cancer than of colon, breast, and prostate cancers combined. -American Cancer Society

MA CT RI NJ MD DC DE

C.A.R.E. â&#x20AC;&#x201C; 20

2018 STATS SHEET Overall Incidence Rates by Race 23% Non-White Hispanic

18% Hispanic 20% American Native Alaska Native

Estimated New Cases by Gender and Cancer Type

15% Asian Pacific Islander

24% Non-Hispanic Black

% More Likely to Contract by Gender 8% Male

2% Male

16% Male

6% Male

Prostate 19% Lung & Bronchus 14% Colon & Rectum 9% Urinary Bladder 7% Melanoma of the skin 6% Kidney & Renal Pelvis 5% Non-Hodgkin Lymphoma 5% Oral Cavity & Pharynx 4% Leukemia 4% Liver & Intrahepatic Bile Duct 4%

Breast 30% Lung & Bronchus 13% Colon & Rectum 7% Uterine Corpus 7% Thyroid 5% Melanoma of the skin 4% Non-Hodgkin Lymphoma 4% Pancreas 3% Leukemia 3% Kidney & Renal Pelvis 3%

8% Male Based on Breast (female), Colon & Rectum, Kidney & Renal Pelvis, Liver & Intrahepatic Bile Duct, Lung & Bronchus, Prostate, Stomach and Uterine (cervix).

Estimated 1,735,350 New Cancer Cases in the U.S. in 2018

The lifetime probability of being diagnosed with cancer is 39.7% for men and 37.6%.

Most Number of Cases by State

FLORIDA

TEXAS

CALIFORNIA

Least Number of Cases by State

#37 #37

NEW MEXICO

1. Wyoming 2. District of Columbia 3. Alaska 4. Vermont 5. North Dakota 6. South Dakota 7. Rhode Island 8. Montana 9. Delaware 10. Hawaii

– American Cancer Society, cancer.org, Cancer statistics 2018 CA: A Cancer Journal for Clinicians

NEW YORK

OHIO

PENNYSYLVANIA

#10

#7 ILLINOIS

GEORGIA

NORTH CAROLINA

MICHIGAN

For more facts and statistics, visit: cancer.org/research/cancerfactsstatistics/index

C.A.R.E. – 21

THE JOURNEY: Beginning the Journey

Beginning the Journey “You have cancer.”

You may be able to remember the year, date or even the time you received that news for you or a loved one. No one can ever prepare to get that news themselves or learn it about someone they care about. From that day forward you know your life will never truly be the same, because while cancer is simply one word, it holds a world of impact. Reactions to hearing a diagnosis vary. Know that there is not a right or wrong way to react or approach cancer – there is simply YOUR way. Your way in this journey is always the “best” way.

VOICES FROM EXPERIENCE “What I did when I found out I had cancer” – I held the phone in silence. – I automatically kicked into “survival mode” and made a decision that I was going to fight. – I stared at the doctor and said absolutely nothing. – I don’t remember anything else that was said. – I sat in the parking lot and cried in my car. – I kept it to myself for a while. – I freaked out. – I held my daughter’s hand and we teared up. – I had my husband call everyone ... my family and friends. – I called my husband to come and pick me up. – I just looked at my daughter and granddaughter and didn’t say a word. – I felt like I was a disappointment to my family. – I sat quietly in a room thinking about my husband and our two young sons. I couldn’t think or concentrate clearly. – I was shocked and in denial. – I felt it was coming. I wasn’t surprised at all. – I made a commitment that it wasn’t going to get the best of me. – I thought, I can’t have cancer…I’m too busy. – I was in denial, angry, afraid and suddenly insecure. – I was very afraid of what was ahead of me. – I immediately Googled the statistics. – I just sat there and started crying.

– I was very practical. – I felt like my body betrayed me. – I wasn’t afraid or angry. I just knew I was in for a rough time and moved toward the goal of beating it. – I asked myself how strong is my faith? How am I going to get through this? – I got mad at everyone, including God. – I said,why not me – realizing cancer doesn’t discriminate. – I was in a fog. – I scheduled surgery for the next day. – I didn’t ask any questions because I didn’t know what to ask. – I dropped whatever was in my hands. – I felt like I had a panic attack and collapsed toward the ground. – I thought, what do I do now? – I felt like my world fell apart. – I thought, I’m going to be one of the survivors. – I asked God, “Why? I’ve tried to be a good person.”

C.A.R.E. – 22

To share the story of you or a loved one affected by cancer: visit careguide.info

Follow-up questions Okay, you and your loved one has cancer. You know that asking your doctor questions is an important part of managing your care – but you really might not even be sure what it is that you should be asking right now. Your specific questions will be based on your unique situation and they may change over time. Try these to help get the conversation going and to begin to map out your plan of action. QUESTIONS ABOUT YOUR ONCOLOGIST +Are you specialized in my type of cancer? Should I get a referral to someone else? +Who else should I talk to right now, and in what order of priority? +How can I contact you in case of an emergency or if I have further concerns? QUESTIONS ABOUT YOUR DIAGNOSIS +What type of cancer do I have and where is it located? +What is the stage of my cancer? What does this mean? +What are the symptoms that I may experience from the cancer? QUESTIONS ABOUT SURGERY (if applicable) +Can my tumor be removed through surgery? Why or why not? +What are the possible complications of the surgery? +What does my recovery look like? QUESTIONS ABOUT TREATMENT (if applicable) +Which treatments, or combination of treatments, do you recommend? Why? +Are there any clinical trials available to me at this hospital or others? +What are the potential benefits and risks of my treatment options? +What do each of the medications being prescribed for me do? +What type of bloodwork, tests or scans will I need and how often? +What is the expected timeline for my treatment? QUESTIONS ABOUT SIDE EFFECTS +What are the side effects (short-term and long-term) of my treatment options? +What medication(s) will be prescribed and do they have their own side effects? +How can I keep myself as healthy as possible? QUESTIONS ABOUT DIET +What lifestyle and diet choices should I make? +Can you recommend a dietitian or nutritionist? QUESTIONS ABOUT SOCIAL CONCERNS +Will my ability to work, travel or drive be affected? +Will I need to spend time in the hospital? +Will I have physical limitations? +What support programs and resources are available for me and my family?

The inital days and appointments can be the most overwhelming. TAKE SOMEONE WITH YOU to help ask these questions, take notes and get a good grasp on the information. You’re on information overload right now, so an extra set of ears will help you process it all later.

Time to reflect QUESTIONS TO ASK YOURSELF AND DISCUSS WITH THOSE YOU TRUST +Does the doctor seem interested in my questions and easy to talk with? +Am I satisfied with how they answered my questions? +Do I trust and feel comfortable with the doctor and his/her recommendations?

C.A.R.E. – 23

In My Shoes...

Nicole

A CRUCIAL CATCH I did a breast self-exam while watching a NFL game during in October Breast Cancer Awareness month. All that pink made me take pause and do it. From finding my lump to diagnosis was less than 3 weeks. I can’t imagine what could have happened if I waited until I was 40 to get a mammogram. You are your own health advocate. You need to take charge of your life and be proactive about screenings, self-exams and your annual physical. It’s no one else’s job but yours. FROM ADVOCATE TO FIGHTER For twelve years my job was to promote breast cancer education and awareness. It’s all very surreal right now. Instead of passing out the pink survivor shirt, I’m the one wearing it. PLAYING TO WIN When this whole thing started I compared this to being a manager of a Fantasy Football Team. It’s my team and I’m the owner. My husband is the GM. I’ve got my “team” of medical professionals, cheerleaders, and front office staff (family and friends) to support me. This is a long journey, but I just deal with it day by day. We are going to fight and we are going to win. To read more only about Nicole’s story, visit careguide.info

If you or a family member would like to know details of a prognosis be sure to blatantly ask the oncologist’s projection. Then you can discuss with each other how public you want to make that news and anything else regarding your diagnosis.

TO TELL OR NOT TO TELL

E C N LA

A AT THE ANNOUNCEMENT AND YOUR PRIVACY After the initial shock, feelings, or reaction wears off and most of your initial questions have been answered, it’s important that you determine whom you choose to take on this journey with you. Whether it be, what medical team you want or what people in your life to know about your diagnosis, the decision and the timing is entirely up to you. You might never become comfortable with uttering or focusing on the words “I have cancer,” while others will share their diagnosis, test results etc., to so many. Neither is better or worse. There is simply YOUR preference. Who you tell and how is often discussed between the patient and caregiver. Sometimes this decision is about what – and for whom – you have the mental and physical strength to deal with at the time. Be sure to vocalize your preferences to others, so that your privacy isn’t unintentionally jeopardized. Remember to put anyone OPTIONS: you want to have access to Call | Text | Email | Facebook Message your medical records on your Discuss in person HIPAA release form. The Have someone else do a mass announcement Health Insurance Portability or tell others for you and Accountability Act is a US law designed to provide privacy standards to protect Setting up a CaringBridge account, email, patients’ medical records and group messenger etc. other health information so that all announcements are in bulk. provided to health plans, doctors, hospitals and other Overall, tell everybody outside your family. health care providers. Tell nobody outside your family. Either way, it is YOUR news, YOUR life, and so you have the right to approach it in the time and in the manner in which YOU feel most comfortable.

C.A.R.E. – 24

RHONDA SINCLAIR, RN NURSE PRACTITIONER

THE ROLE OF THE MEDICAL TEAM

We are here to help and answer questions and educate to help the treatment go more smoothly for all patients. A RECOMMENDATION FROM THE START

Having your family close can greatly improve your outcome, just knowing your cared for by family and friends can boost a patient to finish treatment when they want to give up

A Dose of Info from The Pros

To learn and read more about Rhonda of CHRISTUS St. Vincent Regional Cancer Center, visit careguide.info

VOICES FROM EXPERIENCE – Look at all your treatment options, including clinical trials.

– Have faith in your own abilities and those of your professional medical team to achieve a future.

– Utilize the patient advocate at your cancer center.

– Don’t focus on what you might or might not have done to get cancer. That’s the past. Focus on the now.

– Take a family member or a trusted friend to your appointments & have them take notes. They can help explain what’s happening.

– Strive for balance.

– See a therapist if you need to or attend a support group.

– Nothing can determine if I’m going to have a good day or a bad day…it’s on me.

– It’s OK to have a pity party….you might even have a couple. Now feel free to invite someone or have one alone. Just at some point say “OK, party’s over” I’m going to deal with it now.

– The cancer battle is a marathon, not a 50-yarddash, and you have to take it one day at a time, and one treatment at a time.

– Talk to a spiritual leader. My priest helped a lot. – Numbers are for doctors. Let nothing determine if you’re going to have a good day or not, you determine that.

– You can’t always control your feelings, but you can set a personal goal to manage them in a positive way. – Talk to a survivor because he or she will give you hope.

– Can’t get stuck on that numbers wheel – spinning around over prognosis or stage.

– Self-determination is key, you must be committed to working to get through this.

– Remember that cancer is a word, not a “sentence.”

– Acknowledge that your life will never truly be the same and move forward as best you can.

– Don’t blame yourself for getting cancer – it is what it is.

– Take bite-sized tastes of things, tackling things one thing at a time.

– Now, more than ever, surround yourself with positive – Sometimes cancer news is so overwhelming that people. Friends that drain you or don’t lift you have you become mentally numb and just don’t know no place on your journey. what questions to ask. Your questions are there – Recognize that all can change at a spin of a dime. to open a patient-doctor dialogue. As you make that one big leap of faith toward treatment, feeling – The big picture seems like a huge mountain to imformed and comfortable is important! climb but small steps forward will make the goal of resuming a normal life a possibility.

You are not your cancer and it cannot define you. YOU define your experience with cancer and what it will mean for you and your life. C.A.R.E. – 25

THE JOURNEY: Your Healthcare Family

Your Healthcare Family

There are people who want to help you on this journey. A personâ&#x20AC;&#x2122;s health is a complicated matter and adding cancer as a factor to your care calls for a holistic approach in ensuring you have a wide variety of support. Knowing who is on your team is crucial in knowing who to turn to for guidance and answers to your important questions.

MEDICAL ONCOLOGISTS

We specialize in treating people with cancer. We will be reviewing your scans and making decisions on your Photo of: treatment/medications. Many Scott Herbert, MD, CHRISTUS St. Vincent times I specialize in your Regional Cancer Center specific type of cancer.

RADIATION ONCOLOGISTS

We specialize in radiation in the treatment of cancer and work closely with other physicians as part Photo of: of your multi-disciplinary Matthew Jackson, MD, medical team.

PRIMARY CARE PROVIDERS

We might have been the one to detect your cancer. Photo of: I help manage Angela Teague, MD, other chronic CHRISTUS St. Vincent health conditions, Regional Medical Center keep you up to Your oncologist will date on your manage your cancer, health care but you also need to maintenance and work with you to get a primary care physician to oversee see who else needs your general health. to be involved in your health care team.

CHRISTUS St. Vincent Regional Cancer Center

PHARMACISTS

NURSE PRACTITIONERS FOR ONCOLOGY

We have a masters or PhD prepared nurse who is able to diagnose Photo of: and treat you while in Michelle Stratton, MS, RN, all stages of your cancer AGPCNP-BC, journey. The nurse CHRISTUS St. Vincent practitioner works with Regional Cancer Center your physician and their care is complementary. Nurse practitioners take a holistic approach in your treatment.

SURGEONS

Photo of: Anna Voltura, MD CHRISTUS St. Vincent Breast Institute

For those who need surgery to remove cancerous cells or areas of the body, we consult with you and am responsible for your operation. C.A.R.E. â&#x20AC;&#x201C; 26

Photo of: Evelyn Gossum, RPh., CHRISTUS St. Vincent Regional Cancer Center

We make sure the medications ordered by your physician are appropriately prepared for administration. We provide drug information to health professionals, patients and their caregivers.

ONCOLOGY NURSES

We work directly with your oncologist to ensure all aspects of Photo of: your care are addressed Mary Kay, RN, during treatment. I administer your CHRISTUS St. Vincent chemotherapy and Regional Cancer Center radiation therapies, make integrative, nutritional, social work, and program referrals. I manage side effects/symptoms (fatigue, appetite loss) while providing emotional support for you and those around you.

SOCIAL WORKER/ COUNSELOR

I can talk with you and your family about your emotional and/or physical needs and can direct you Photo of: to support services and Karen Gano, LCSW resources that best fit CHRISTUS St. Vincent your situation. We focus Regional Cancer Center on how you are feeling, self-care, self-compassion, healthy coping strategies, action planning, problem solving, advocacy, and empowerment.

PATIENT NAVIGATOR ONCOLOGY

I work with you from your definitive diagnosis of cancer through treatment and Photo of: into survivorship. Through Beth Carlozzi, PhD, coaching and education, I RN, OCN will help you understand CHRISTUS St. Vincent medical problems and Regional Cancer Center treatment options, as well as assist you in making informed decisions on your cancer care.

PALLIATIVE CARE PHYSICIAN

I am there to discuss any questions/issues/fears which are affecting the patient’s quality of life. Through Photo of: eastern and western medicine Dr. Douglas Egli, MD a palliative care physician CHRISTUS St. Vincent Holistic focuses on your physical, Health spiritual and your emotional & Wellness Center well-being as you navigate your serious illness.

DOCTOR OF ORIENTAL MEDICINE

Photo of: Doctor of Medicine-CSV Eric Ray Buckley DOM CHRISTUS St. Vincent Holistic Health & Wellness Center

PALLIATIVE CARE PATIENT NAVIGATOR

I will be your “go to” person, answering questions about your care, and helping navigate through the health system. I’ll support those with chronic illness through this challenging time.

MEDICAL ASSISTANTS

I provide treatments that can help patients better tolerate the side effects they may experience while undergoing cancer therapies; i.e. acupuncture, massage.

We help prep you for your doctor/nurse practitioner/ oncologist. Whereas, we are not informed about your Photo of: treatment/condition- we do check your weight, vital Micquelle Angel, MA signs, and check to see if your CHRISTUS St. Vincent medication has changed. Regional Cancer Center

PHYSICAL, SPEECH & OCCUPATIONAL THERAPISTS

Photo of: Bernadette RomeroJaramillo, DPT CHRISTUS St. Vincent Sports Medicine

Photo of: Fr. Adam Lee Ortega y Ortiz, Rector of The Cathedral Basilica of St. Francis of Assisi

Photo of: Kristin St Clair CHRISTUS St. Vincent Holistic Health & Wellness Center

We are part of your rehabilitation team, to help facilitate improving strength, endurance, balance and activities of daily living to gain functional independence. Speech and cognitive neurodevelopment will help with memory, expressive communication, executive thinking and daily problem solving.

RADIATION ONCOLOGY NURSES

We have extensive knowledge in radiation treatment and perform a variety of roles including patient education, side effect management and patient advocacy. Photo of: Veronica Kirby, RN CHRISTUS St. Vincent Regional Cancer Center

RELIGIOUS & SPIRITUAL LEADERS We can help you and your family navigate through this journey mentally and emotionally. I may be a chaplain, minister, priest, rabbi, imam, youth group leader or other kind of religious or spiritual care specialist.

Photo of: Rev. Hollis Walker Ordained Interfaith Minister and Cancer Foundation for New Mexico support group faciliator. (photo credit: Peter Ogilvie) C.A.R.E. – 27

On your team The medical personnel that you interact with often become your friends, mentors, and are regularly viewed as “family” by those affected by cancer. They honestly might even get to know you better than anyone else at this stage of your life. Embrace these newfound relationships. They do more than recalculate medication, triple-check your bloodwork, and give you your treatments. They listen to your emotional problems, hear how you feel, and above all else, they are on this cancer rollercoaster with you. These people aren’t just their loved one’s medical team – but they, too, mean a lot to caregivers and the loved ones of the patient. You aren’t expected to have any answers. That’s what your healthcare team is for. They will always help explain, answer and REANSWER any questions you continue to have to help you understand.

We are here to help patients and families to make this journey less stressful. We are here to make patients feel welcome and loved. It’s important that they understand that, to us, they are not just a number. Not at all. There is no better exercise for the heart than reaching and lifting others up –and this is what we hope to do for everyone who walks through our doors. – Christopher Flores Front office medical oncology

C.A.R.E. – 28

In My Shoes...

Ieleen

“New patients that come in will now have a new set of caring friends. Everyone asks how I remember everyone’s name. That’s EASY. I always remember my friends. I have been here for 15 years and the best part of my job is how I’ve met some of the most wonderful people. We have our ‘WORK FAMILY’ that we laugh, care, cry and love each other... And we include our patients into our ‘FAMILY.’ ” Ieleen Garcia Christus St.Vincent regional Cancer Center

I love volunteering in the chemotherapy infusion room because I so deeply appreciate the care I received when I was going through treatment of my own, by both the excellent nursing staff and the kind and thoughtful volunteers. This is my way of giving back to those that provided so much for me in my time of need. It is very rewarding to show the same kindness, support and understanding to those who are getting treatment. Lastly, a wonderful aspect of volunteering is all of the friendships I have made with fellow volunteers and patients. It makes me very proud to be a part of this CHRISTUS St. Vincent Cancer Center “family.” – Polly Eliason, volunteer Cancer Foundation for New Mexico

C.A.R.E. – 29

CHRISTA WOODS, RN ONCOLOGY NURSE

ON HER LIFE’S WORK:

A Dose of Info from The Pros

When I was 24, my brother Jason died of leukemia. He was 26 years old and I cared for him while he was treated at John’s Hopkins. Jason would always tell me, “Chris, you should do this. They [oncology nurses] have such a cool job!” I always remembered him saying this. I, too, believed it was so “cool” and that CHRISTA WOODS, RN the kind of work they did was so important. Aside from my education and advanced skills/oncology certifications, I try to offer something extra to patients and their families. I can offer personal experience. For I know what it is like to sit in that chair by your family member. I know what it feels like to hear the words, “There are no more treatment options at this point,” “your cancer is terminal” or “you have so many months to live.” I really understand what those who may happen to hear this and their loved ones are going through. Truly, I’ve been there. I have been in oncology for eight years, and I’ve found the most grateful and respectful population of patients I have ever worked with here at CHRISTUS St. Vincent Regional Cancer Center. I enjoy interacting with such a special group of people. I have never felt such gratitude and respect when caring for other types of patients. They are so thankful and they teach me so much about life. I have cried with patients. I have cried with their families. I have grieved with them and for them. I held their hands, I have visited their homes, I have told them I love them. I have opened my heart to so many and certain patients have taken a piece of it with them when they died. I understand their journey and how important it is for them. If I can pass along the message to those I care for that to never forget how important their quality of life is, then I’ve done my job. I feel like if this is something you have to go through, I like being the one that can help you through it, make it more pleasant, less scary, maybe even laugh and ensure you feel well taken care of with available resources. You are not alone, and we all really care about you. This is SO much more than a job. I LOVE THIS WORK! To read Christa’s story online, visit careguide.info

VOICES FROM EXPERIENCE MESSAGES OF GRATITUDE I was always greeted with a smile at the front desk and I coulcn’t help but leave with a smile from how caring, knowlegeable, and positive all of my nurses were. I will forever be grateful for their help getting me through this challenge. They defined what caring really means My family and I will never truly be able to thank them enough for how they impacted our lives during my journey. – Theodore (2016) At the Cancer Center it is like a little family. They know who you are, by name and face. From the massage therapists to those collecting bloodwork in the lab – they are so gentle and sweet. The schedulers make a huge impact on your experience, as well. So I wan to thank EVERYONE there at the CHRISTUS Cancer Center for all that they do and how they make us all feel every day. – Lois (2017) I had a bilateral mastectomy done by Dr. Voltura and reconstruction by Dr. Green at the same time. What a great team! I was so grateful to the cancer center for all the programs, classes, support groups, and resources available. I have attended the healthy cooking classes, lymphedema prevention, yoga classes, and the special movie presentation at the Lensic regarding clinical trials. Thank you CHRISTUS St. Vincent Cancer Center! – Diana (2018) C.A.R.E. – 30

After a cancer diagnosis, time flies by so quickly that it may feel like you are going through the motions. Bouncing from one appointment to the next, meeting one new face after another. Take a step back early in the journey and make a conscious effort to decide the right path for YOU. How you get through treatment and how you choose to live your life with cancer is such an individual path. It’s crucial to talk with your oncologist, making sure you understand the stage of your cancer and being able to ask the uncomfortable questions. Doctors are experts in many things and they can offer you advice, but ultimately you have the right to say no to any test or treatment at any time just be informed in all decisions.

Second Opinions At some point during your treatment, you may want to seek other medical counsel. A second opinion will either confirm your diagnosis and treatment plan or introduce new information. Find the confidence to make the decisions you need to for your health. Know that it is common for patients to get a second opinion and regardless of the outcome, take comfort in knowing you explored your options. HOW TO DISCUSS IDEA WITH YOUR ONCOLOGIST Before we start treatment, I’d like to get a second opinion. Will you help me with that? If you had my type of cancer, who would you see for a second opinion? If this dialogue is uncomfortable for you or you don’t get what you feel you need out of it, pursue the second opinion on your own, or enlist a loved one to assist you with this potentially stressful process. NEEDED FOR A SECOND OPINION Once you have decided who you will see, you will need to obtain documents. You can have these items sent directly or you can take to the second doctor yourself.

P Your medical records

P All original X-rays

P All test results

It is vital that you get taken care of wherever you feel is best for YOU. Ultimately, it is your health and your life, so your opinion is what is most important.

TO TREAT OR NOT TO TREAT Recognize, though, that cancer “doesn’t sleep”– making all of these decisions time- sensitive.

NC A L G A AT

There are a variety of reasons someone might be reconsidering having treatment, such as: • Fear of side effects Anyone who is thinking of refusing • Financial issues cancer treatment should talk with • Doubt about the their loved ones and oncologist to benefit of treatment clearly understand the likely outcomes • Hesitance about of both treatment and non-treatment time commitment before making a decision. • The excessive travel involved C.A.R.E. – 31

THE JOURNEY: Know Your Options

Know Your Options

Clinical trials Clinical trials are studies that try to answer scientific questions and to prevent, diagnose or treat cancer. Clinical trials help us determine whether new treatments are safe and effective or work better than current treatments. They may also help us better understand the side effects of treatment and how to manage them. If you or a loved one is interested, talk to your doctor. Clinical trials are an option for all stages of cancer. All clinical trials are voluntary.

POTENTIAL BENEFITS: C v Having access to a new treatment that is not available outside of a clinical trial. v Gaining a member of the research team that is by your side throughout the clinical trial, monitoring you closely v More effective treatment v Adding to the knowledge about cancer and help future patients

POSSIBLE RISKS: D v Extensive eligibility and screening process v May not be better than the standard, or may have more side effects v Potentially extra visits myclinicaltriallocator.com or tests and clinicaltrials.gov can help you find information about trials in various locations.

In addition to treatment trials for breast, prostate, lung and colorectal cancers, we are also conducting nursing research and registry studies at CHRISTUS St. Vincent Regional Cancer Center. The Cancer Center is continually reviewing the list of available trials in order to best serve the community, so inquire with a member of the research team for the most current opportunities. CONTACT: Research Department CHRISTUS St. Vincent Regional Cancer Center | 505-913-8933

CLINICAL RESEARCH

OLIVIA SLOAN AND

DOREEN PADILLA RESEARCH NURSES

A Dose of Info

Clinical trials are research studies that aim to evaluate whether treatments are safe and effective. Todayâ&#x20AC;&#x2122;s most effective cancer treatments are based on the results of clinical trials. All clinical trials at our Cancer Center include standard of care treatment, at a minimum. The research team works closely with the physicians and nurse practitioners on a daily basis to coordinate care and are deeply committed to ensuring patient safety, care and compassion.

from The Pros

Contact CHRISTUS St. Vincent Regional Cancer Center: 505-913-8933 C.A.R.E. â&#x20AC;&#x201C; 32

A life with cancer is full of appointments, uncertainty, managing side effects and newfound challenges. There are many highs and lows that come along with the journey. The changes that you and your loved ones experience during this time (and beyond) are huge adjustments. Be patient with yourself as you determine what this all will mean to you and your life. Every hour you may Introducing the “new normal” feel different. Take advantage of the Cancer may result in: times your energy level is manageable vAltered routines by doing something vChanged roles and duties in your family YOU enjoy... vStrained or strengthened relationships whatever that may be! vChallenges in dealing with money and insurance vThe need for help with daily activities

The loss of control You won’t be able to control your feelings, but you can set a personal goal to approach them in a way that feels healthier or at least makes your days more manageable manageable.

Those living with cancer and their caregivers oftentimes feel a powerlessness over what is so directly impacting them. It can feel like some invisible force is directly managing your life. For many, the most difficult but most important thing they can do is — to the extent that it’s possible—stop taking care of others and be okay with relinquishing control.

PHYSICAL + MENTAL + EMOTIONAL HEALTH

Allow yourself to feel the spectrum of emotions that naturally come with your condition’s bumpy ride. Remember there is NO right or wrong way to feel or behave. Don’t judge yourself for your feelings. It’s OK to NOT be OK all the time.

A AT

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Some people pretend to be cheerful when they aren’t. Some people want to show the world they can handle cancer on their own. There is nothing wrong with what you present to others, as long as that persona does not prevent you from getting the help that may be needed. Try to be honest and talk about all of your feelings, not just the positive ones. Don’t be afraid to tell people what you need from them and what type of response is helpful to you. Every emotion is a normal one. Denial, anger, fear, stress and anxiety, depression, sadness, guilt and loneliness are all feelings that can go hand in hand with a cancer diagnosis. Feelings of hope, gratitude and optimism can also result. ALL of these feelings can come and go, sometimes even all in one single day. (See pages 83- 88 for some “other forms of therapy” that can help you relax). A collaborative dialogue with the oncologist and other medical professionals, support from family and friends and attending support groups both for the caregiver and patient is an important way to figure out how you are feeling. The strategy in which one “plays the cards they’ve been dealt” is a very personal and different one for everyone. No matter what, practice self-compassion by accepting each and every part of who you are each day and prioritizing your self-care, because YOU deserve it ... especially now. C.A.R.E. – 33

THE JOURNEY: Living with Cancer

Living with Cancer

In My Shoes...

Lois

ON CANCER Cancer isn’t a bad word. It’s not superstitious to say the word. If you say it or talk about it, it’s not like you will get it. You also aren’t doomed with a diagnosis. Every case is very dependent on the individual. The numbers of staging and prognosis help the doctors treat you, but they don’t determine your end of life. EFFECT ON HER MARRIAGE Now with cancer in our lives, we try not to sweat the small stuff. We put things into perspective. Being able to receive Jerry’s help is such a blessing to me. Change has to take place in a situation like this. It’s okay if you aren’t able to do everything anymore. Sometimes you just have to pull back and that’s okay. There are good days, then there are better days, but my husband never gives up. He is constantly supporting me and by my side. OVERALL If you’re going to hurt, you might as well be hurting doing something you enjoy. I see this as a journey – it’s a pilgrimage, and I’m not worried. What God wants, God wants. To read more online about Lois see pages 97-100 and visit careguide.info

“Quality of life”= enjoying your life In the midst of this new normal, there are ways to reduce stress, many of which offer the chance to spend quality time with those you care about or do some of the things you’ve always wanted to do. Through the day-to-day logistics and appointments, many people are still able to lead full lives. Even though cancer alters much in your life, know that you have the power to create a new, more intentional version of your life. Athough they might just look a little different. you can still do things you enjoyed “BC”– aka before cancer. Among all of the memories that can be created... HIGHLIGHTS • Listen to music • Binge-watch positive TV programs & movies are the extra fond ones that stand • Read books and magazines that interest you out among the rest. Let it be a • Take up a creative outlet, such as crafts or scrapbooking goal to create more highlights • Write your thoughts in a journal or keep a memory book in your life, with those you care • Pray, meditate or catch up with old friends about – to help get you through this journey and beyond. • Take walks • Play with pets • Cook • Play cards or board game • Spend time hanging out with your kids/grandchildren/family • Start a new physical activity (with permission from your medical team)

C.A.R.E. – 34

In My Shoes... Ernest “Mr. Griego, unfortunately there’s no other way to say this but you have stage lV, grade 3 breast cancer, the cancer has metastasized progressively into your lungs and bones. There is no treatment at this time ...” Those were the words that changed my life forever. All I could feel at that time was a sense of relief and sympathy. Relief, because now I had answers to why I had been in so much pain weeks past. Sympathy for those three beautiful women that are some of the biggest parts of my life knowing all the pain I was causing them in that moment. Since then, I have had and still have such a great support system, family and friends that have been by my side since day one. I have never felt negative about my cancer, and I truly believe only good will come from this.I had to share this information as much as I could with anyone who’d listen so that others would have a better chance than I was given. I’m 48 years old and have always lived my life like this, never taking life for granted. To learn more about Ernest see page 147 and read full testimony online at careguide.info

STRESS MANAGEMENT

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Let’s face it – there are plenty of reasons to feel distressed during a cancer diagnosis. Whether the patient or the caregiver or affected family members, all people will be better versions of themselves when they make it a point tackle their stress levels. When we soothe ourselves, we trigger the flow of oxytocin, a “feel-good” hormone. DE-STRESSING TECHNIQUES: – Get a massage – Take a bath – Meditate – Spend some time alone – Maintain a healthy diet – Get enough sleep Everyone finds solace and comfort in their own ways. The largest priority is to identify your stress before it starts to have an aggressive impact on you physically, mentally or emotionally. Be proactive and focus on self-care. See pages 83- 88 for some “other forms of therapy” that can help you or your caregiver relax.

In My Shoes...

Cecilia

BLESSINGS IN THE BATTLE My greatest blessing during this ordeal has been my youngest sister, MaryHelen who accompanies me to all my appointments. I also am grateful for my sister, Bernice, and niece, Carmen and an army of prayer warriors – family and friends. Then there is my sister, Nora, who gets me back on track when I wander in my thoughts and feelings. ADVICE TO OTHERS Do NOT dwell on negative thoughts or feelings. You have the power to switch the channels in your mind to thoughts of your blessings and feelings of gratitude. Being patient, trusting, and accepting of God’s will has been key for me to finding peace in this “bumpy” journey. To read more online about Cecilia’s story, visit careguide.info C.A.R.E. – 35

VOICES FROM EXPERIENCE – Don’t Google anything! You want credible information? Talk to your doctor.

– Regardless of if you are feeling bad, enjoy the fact that you still can shower.

– I truly believe being as positive as you can and having a strong faith kept me going through some very strong treatments.

– Even if you are feeling crummy, get up and do the things you still enjoy.

– Your frame of mind needs to change. Don’t do stuff because you have to – do it because you can do SOMETHING. – Don’t compare stories with others. Use other people for bonding but NOT for medical advice. Bond but don’t compare what they are taking or going through vs. you. Every case is specific and catered to each individual. Comparing will hinder your energy level. – Hang around happy people and keep to your regular daily schedule as much as possible. Don’t give up the fun activities! – Prayer above all else. I prayed a lot! Especially during the times when I didn’t have the energy to do anything but lie in bed.

– Do your best not to dwell on your illness. – Don’t be afraid to accept help. People will be coming out of the woodwork to raise money for you, to bring gifts, food, etc. Let them. They WANT to help and it makes them feel good and at the end of the day, you will need all the help you can get! Put your pride away. – Don’t lose hope. – Sometimes emailing or texting about your feelings is easier than talking face to face. – You’re going through enough, don’t worry about entertaining others. It’s not your job. – Take the moment as it is. All we have is the moment. Keep your faith. Don’t give up.

– I also have a little book of prayers and I had special prayers I said every day, which brought me comfort.

– Stay positive, make the best of it and above all else, thank your doctors and nurses every time you see them and treat them with respect.

– Let go and let God!

– Accept life with it, and how to manage day by day

– Keep fighting.

– Fear is always there, it’s just a matter of dealing with thing in better ways for better days.

– People aren’t mind readers. You have to tell people what you need.

– Go to counseling.

– What they feel is ok ... everyone goes through it a different way. Pray, meditate, seize the day with whatever enthusiasm you have – it’s okay.

– Talk to others in your position.

– Learn about your disease. You need to go take those tests and do the things. You need to be your own advocate.

– DONT ISOLATE YOURSELF. Get out of the house

– Make conscious choices about how you spend your time and whom you spend it with.

– Give yourself the ability to say “I’m not going to deal with this or think about my cancer until Monday.”

– Continue to fight and focus on living.

– Be gentle with yourself.

– It’s ok to get rid of all materialistic things.

– No one says you have to be in a good mood– but keep living

– Sometimes with cancer you just have to go with it…for your quality of life. – Get yourself out of bed. Whether you are feeling good or not ... move. I think it’s important for your mental and physical health to get up and move around if you can. – Give yourself pep talks if you need to. – Know your limitations. So what if you have to walk instead of running, just do things you enjoy.

– Continue your normal routine to the best of your ability – Trust yourself een in a journey that is uncertain.

– Appreciate the journey. So often, when we push toward that magical “remission” word we forget the battle that it is to get there. Love your body for fighting. Love your people for being there. Embrace the fact that this isn’t what you planned, but if you can try to find something or someone new to embrace every day, it might just make the rollercoaster a little more manageable. – My faith helped me get through (after I had my pity party).

– There is a person out there who will help you, so take someone to your appointments.

– Be strong and believe that you can get through the tough times.

– Accept help!!! It makes others feel useful and it relieves stress on you. Someone wants to bring dinner or clean your house…LET THEM!

– Accept life with cancer in it, and how to manage day-byday.

– Staying positive number one, definitely support from family and friends was a strong second and knowing you’re not the only one going through this.

– Fear is always there; it’s just a matter of dealing with things in better ways for better days.

– Don’t lose hope and find blessings in your life. – Surround yourself with positive people.

– Staying positive helped me, for my peace of mind.

– For someone who used to be incredibly fit and active, it’s tough to stay positive. C.A.R.E. – 36

In My Shoes...

Elizabeth

ON HAVING CANCER I don’t know if I can compare cancer with any one thing. It is annoying, it is scary, it makes you feel helpless, it laughs at you, it is evil, it is a reminder, it is beatable, it is not all powerful, it will not win. For me, I believe that cancer thinks it can make you give up. But if you don’t let it and you know that there is more than this life, then whatever happens you are not alone and you will be healed, if not physically ... then spiritually. TO OTHERS WITH CANCER LAUGH, find humor in everything, even the cancer. If you can’t laugh, then fake it! Just never let anything stop you from finding joy and laughter in your life. To read more online about Elizabeth’s story, visit careguide.info

LIVING WITH CANCER SUPPORT GROUP 2nd & 4th Wednesday of each month from 1- 2:30 p.m. The Cancer Foundation for New Mexico 3005 S. St. Francis Dr., Ste. 3-B, Santa Fe HOW WE HEAL SUPPORT GROUP 1st Wednesday of each month from 1- 2:30 p.m. The Cancer Foundation for New Mexico 3005 S. St. Francis Dr., Ste. 3-B, Santa Fe

C.A.R.E. – 37

Celebrate triumphs, no matter how small they may seem. Find any excuse to reward yourself with anything that will make your life better. and remember that everyone deals with cancer in their own individual way, because no case or person is the same. Focus on your journey.

THE JOURNEY: The Treatment Process

The Treatment Process

The thought of treatment can be pretty terrifying. Treatment plans are custom made specifically for each patient undergoing any kind of treatment. Learn about the process and ask questions so that you may better familiarize yourself with the your treatment process.

What to expect WITH RADIATION:

• Most participants wear robes (those treated to the brain, or head and neck generally don’t wear robes). • Prior to treatment patients are in a co-ed waiting room (typically without caregivers or guests, but caregivers of patients who need assistance are allowed) • Treatments are given Monday through Friday (five days a week) for up to seven week.s • One “round” can be anywhere from two to seven weeks (depending on the type and stage of radiation). • Radiation treatments are quick. Each appointment is 15 to 30 minutes. • You will see your radiation oncologist once weekly • Nursing is available either by phone or in person to help with questions or concerns • Most people receive external beam radiation therapy, where a machine called a linear accelerator delivers precise high dose xrays to the site of the cancer.

FAQS

NC A L G A AT

+ Does it hurt? You cannot feel radiation while it is begin given. + Will I be radioactive? External radiation does not make you radioactive. You can be around your pets and family after treatment. + Should I schedule my treatments at a certain time of day because I’ll feel ill after treatment? It does not matter what time of day you schedule your treatments. The side effects of radiation are cumulative. You will not feel ill after treatment.

JENNIFER PORTER, NP NURSE PRACTITIONER

A Dose of Info

One thing I wish that ever yone knew is that cancer treatment doesn’t have to be scar y. Initially, yes, a cancer diagnosis is scar y but we do ever ything we can to make sure you are informed about your health and treatment options. It is always a balance – tr ying to figure out what your body is telling you during treatment. It takes time to adjust. You’ll see that when it comes to side effects, like fatigue, sometimes you need to rest and sometimes you need to move. Overall, when undergoing treatment of any kind just be patient with yourself ... take each day as it comes.

from The Pros

To learn more online from Nurse Practitioner Jennifer Porter, visit careguide.info C.A.R.E. – 38

WITH CHEMOTHERAPY:

• You’ll be resting in a reclining chair while you receive treatment. • You can sleep, read, play games, write, use your laptop or do quiet activities that help you relax. • You can ask a friend to visit or stay with you the entire time. • One oncology nurse will administer your treatment and discuss any questions or concerns you may have. • Sessions can last anywhere from one to eight hours, depending on the treatment. The first one usually takes the longest since education is involved.

SOME THINGS TO HAVE DURING TREATMENT:

laptop notes/phone/ tablet

favorite pillow and blanket

reading material

games to play with family/friends

or anything that will either help you feel productive or relaxed during that time

headphones

notebook and pen to write down thoughts to relay to your medical team

If you feel up to it, try doing something else on your treatment days – have a movie night, listen to your favorite songs. Treat yourself to a favorite meal or restaurant, hang out with a friend or family member – allow yourself to do something you enjoy on treatment days.

The CHRISTUS St. Vincent Regional Cancer Center provides pillows, warm blankets, free Wi-Fi and nutritious snacks for those undergoing treatment and their families.

Doing your part Doing those small things can help your oncology nurses help YOU better. Express any concerns, needs and fears. They are huge resources and members of your team during this journey. HELP BY: • Calling your pharmacy to see if you have prescription refills ready, and then pick them up • Bringing your medications to all appointments (or a list with name, dose, expiration, and refills allowed) • Remembering to ask for prescription refills while you are in your office visit with the oncologist/ nurse practitioner • Telling your healthcare team all of your side effects • Utilizing the nurse triage or doctor on call at night/weekends/holiday if you felt sick – or had a fever in between visits. (See pages 40-43 for more information on managing side effects) C.A.R.E. – 39

THE JOURNEY: Managing Side Effects

Managing Side Effects Cancer treatment strives to destroy the harmful cells in your body. Although its intent is good, in trying to eliminate or control the cancer, it can result in some not-so-good feelings. These are known as side effects, and they can be a result of: Cancer | Surgery | Chemotherapy | Radiation | Any other type of therapy you undergo

Treatment

Common side effect

RADIATION

Can damage the blood-making cells in the bone marrow; patients may have low blood cell counts.

CHEMOTHERAPY

LOW BLOOD CELL COUNTS is a common side effect to treatments that may lead to: + Higher risk of infection (from a shortage of white blood cells) + Bleeding or bruising after minor cuts or injuries (from a shortage of blood platelets)

Treatment affects every person differently. Be honest about how you feel to your medical team and caregiver as most side effects can be managed or remedied in some way.

+ Anemia (from low red blood cell counts), which can cause tiredness, shortness of breath, pale skin and other symptoms

AVOID AN INFECTION Since cancer and treatment already take a toll on your body and your immune system is weakened, it is important to do what you can to prevent getting an infection.

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Try these habits: P Wash your hands often: before you cook or eat, after restroom use, after being in a public place. P Brush your teeth two times a day with a very soft toothbrush. P Stay away from those who are sick. P Washraw fruits and vegetables very well. P Cook meat well. P Stay away from those with recent vaccinations. P Avoid pet-related clean ups. P Try to avoid cuts. P Do not squeeze your pimples. P Keep area around catheter clean and dry (if applicable). P Clean yourself thoroughly after restroom use. P Remove bandages after a blood/port draw once the bleeding has stopped completely. C.A.R.E. â&#x20AC;&#x201C; 40

IF YOU EXPERIENCE:

A. Loss of Hair

B. Chemo Brain

C. Insomnia

F. Mouth Sores/Dry Mouth

E. Nausea & Vomiting

D. Decreased Muscle strength and/ or Motor Skills

I. Skin Irritation/Rash H. Digestive Distress

G. Loss of Appetite J. Neuropathy (Numb, tingling, L. Infertility burning hands/feet)

K. Sexual Dysfunction

M. Effect on the Bones O. Anxiety & Depression and P. Overall Fatigue

N. Edema (Swollen Feet and Hands)

Wear wigs, hats, scarves, beanies, maintaining a short haircut. (See pages 74-78)

Use mild unscented soaps, avoid sun exposure and keep skin moisturized.

Write things down. Ask for assistance. Be patient with yourself and take things slow. (See pages 45-47)

Avoid contact with hot water and unnecessary friction. Use gentle moisturizers, elevate hands/feet, and apply cool compresses.

Avoid caffeine, alcohol, and tobacco. Exercise, start a bedtime routine (reading from a book), and set daytime sleep restrictions.

Talk with doctor about safe medications to help increase sexual desire.

D. Exercise the body and the mind (mind strengthening activities).

Meet with your medical team to disucss options.

Eat a bland diet, small frequent meals, Compazine pills, Ativan â&#x20AC;&#x201C; or ask your doctor about Zofran/Emend.

M. Eat or drink calcium-rich foods, try mild exercise and ask doctor for medications.

Rinse mouth frequently (1 cup water, 1 tsp baking soda and/or 1 tsp salt to PREVENT sores), drink lots of water. Avoid alcohol, caffeine, hot food/drink, and acidic foods & juices. Brush teeth two to four times a day.

Control other side effects that contribute O. Try to recognize fear and its specific causes, talk with to poor eating. Eat small frequent meals, your doctor and practice relaxation. stay hydrated, and get creative with your diet if you need to. (See pgs 48-52)

H. Drink water. Avoid dehydration, caffeine, alcohol, fatty/acidic foods. Eat more fiber, take antidiarrheal/laxative medicines (Imodium A-D or Senokot S, depending on distress).

Reduce salt. Wear compression devices, take diuretics, exercise and elevate affected area.

Speak with a social worker or patient navigator to address your feelings of anxiety or depression. Try exercising 15-30 minutes a day for fatigue. (See page 61 for support and pages 45-47)

LYMPHEDEMA

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A Lymphedema is a common yet under-diagnosed have chronic condition that could occur in anyone especially after swelling past the cancer treatment, injury, surgery or other trauma. expected time for The current treatment for lymphatic disorders this to resolve. is very successful; it consists of manual lymphatic drainage, compression, skin care and education. FYI: It can affect any part of the body not just the arms HOW TO KNOW IF YOU NEED TO TALK and legs; including the trunk, chest, TO A LYMPHATIC THERAPIST: pelvis, head, neck. 1. If you have had lymph nodes removed in any part of the body; radiation or injury to any lymph ALWAYS Be sure that any lymphatic treatment nodes. provided is performed by a certified Lymphedema 2. If you have evident fluid accumulation or a feeling Therapist (CLT) from a reputable program; of “fullness” or heaviness in the area. 3. If you have lost motion, strength, function or have LUNCH & LEARN: Lymphedema Education pain as a result of cancer treatment or trauma to Every 4th Wednesday of the month the lymphatic system. 12-1p.m. (Refreshments provided) 4. If you plan to fly and have had lymph nodes CHRISTUS St. Vincent Holistic Health & Wellness removed or damaged. A compression garment Center | 490-B W. Zia Road., Suite 4, Santa Fe is advised to reduce the risk of developing REGISTRATION REQUIRED: lymphedema. Call (505) 913-3820 to reserve your spot. 5. If you have had a severe injury or surgery and

Pain Management

A Dose of Info from The Pros DEANA BENJAMIN, MS PT, CLT

CLINICAL SUPERVISOR CHRISTUS ST. VINCENT SPORTS MEDICINE

Pain isn’t an inevitable part of cancer, but it is a real possibility. All pain can be treated and most pain can be controlled or relieved. Talk to your doctor about the possibility of pain and about available medicines so you can plan ahead. It’s easier to control pain when it starts rather than waiting until it becomes severe. There’s no need to “tough it out.” Discuss with your medical team how to manage “as needed” dosages and any concerns you have about side effects and the possibilities of becoming dependent on pain medication. WHEN DESCRIBING YOUR PAIN:

LYMPHEDEMA UPDATE There is now a Stage 0 lymphedema recognized by specialists in the field. This stage is nonvisible and not measureable; patients usually feel tightness, heaviness or fatigue in the body part before the swelling has increased enough to be measurable. Experts agree this stage 0 may be reversible; unlike all other stages of Lymphedema that are chronic and lifelong.

• Keep track of your pain, using the commonly used “pain scale” 1(not much at all) to 10 (extreme pain). • Be specific about where it hurts. • Explain when exactly you feel pain (when it starts and when it stops). • Describe what the pain feels like.

For more information about reducing your risk of lymphedema following cancer treatment, visit lymphnet.org and read Deana’s full testimony at careguide.info

C.A.R.E. – 42

MEDICAL CANNIBAS

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A AT A few studies have found that inhaled (smoked or vaporized) medical cannibas can be helpful treatment for neuropathic pain (pain caused by damaged nerves) and improve appetite in HIV patients. Studies have long shown that people who took marijuana extracts in clinical trials tended to need less pain medicine. While the studies so far have shown that cannabinoids can be safe in treating cancer, they do not show that they help control or cure the disease. Some reasons for a patient receiving chemotherapy/biotherapy to use medical marijuana are anxiety, nausea, appetite, pain control and inflammation. If you do choose to address side-effect issues with any cannabinoids always consult with your doctor. There are some patients who are hesitant to use this, because to them, it’s an illegal drug and associate it with something they shouldn’t do or possibly had a bad experience with in their youth. However, there are more ways to ulitize medical cannibas that doesn’t consist of smoking it. There are oils, vapor, edibles, liquid extract or pills. Patient’s can talk to their oncologist about getting medical cannibas, if that’s what is decided. Your treatment center will have the forms for a medical cannibas card that you and your oncologist can each partially complete. You can then mail or drop off the form at the noted address. The card must be renewed every year. Always know that if something is approved by your oncologist and and has a way of helping manage side effect, be unapologetic about your remedies, no matter how new it may be. When it comes to cannabinoids or anything else – do what feels good during your treatment.

FOR... + Seizure + Chest pain or pressure + You can’t talk and breathe at the same time + Large amount of blood in vomit or stool + Fainting or loss of consciousness

PATIENTS: WHEN SHOULD I CALL THE OFFICE? Call if you have ANY of these signs of infection: -Fever over 100.5 or if it is lower and you feel really bad -Cold/shaking chills (even without a fever) -Productive cough -Any cut or wound that is red, has drainage or pain -Pain or burning where you urinate -UNUSUAL bruising or bleeding

Report serious symptoms: Mon-Fri, 8 a.m. - 5 p.m. Nurse Triage 505-913-8919 Evenings and Weekends: Doctor on call 505-913-8900

When side effects from treatment or medication are experienced, try to tackle them right away by using the resources you received at orientation and available information – then work with the triage nurses, who are certified and willing to help you over the phone. C.A.R.E. – 43

If you call and don’t get to speak with a nurse right away, don’t get frustrated – leave a message. You WILL get a call back. It’s much better to give it a few more rings and leave a message to get the help you need, rather than hanging up and trying to figure out your concerns at home alone.

Toll Free: 42 (844)309-25

let t ’ n Do

lots ! C d d Bloo e the leaod Hands! tak

o in G e r ’ You

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, INC. MEDICAL 87113 uerque, NM INVERSE Suite B, Albuq -309-2542 da Blvd. NE, Toll Free: 1-844 ■ 4904 Alame 505-212-05 53 89-2279 Fax: ■ Phone: 505-3

Inverse Medical, Inc. Discovering New Ways in The New Health The Future of HealthCare, Today. www.inversemed.com

- Johonniuss Chemweno Inverse™ Medical, Inc.

C.A.R.E. – 44

Fatigue is one of the most common and distressing side eﬀects of cancer and its treatment. A condition called, “chemo brain” is part of the fatigue. It is a mild but very real decrease in mental functioning. How you are aﬀected will depend on your age, stress levels, blood counts, general health and the other medications you are taking, among other factors.

Common signs of chemo brain • Short-term memory lapse • Trouble concentrating, focusing or processing • Short attention span • Trouble multitasking • Trouble remembering certain words, names or ﬁnishing sentences Despite how counterintuitive it may seem – it is recommended to exercise for 15-30 minutes a day to help with fatigue.

Be honest about your fatigue. Know that there will be activities that will take more out of you than they used to. It’s normal to get frustrated with that. Be patient with yourself and always let someone know if you need to leave some place or simply slow down. Give yourself permission to focus on one thing at a time. Your body is going through a lot, and fatigue isn’t your fault.

Both overall fatigue and chemo brain can change throughouttreatment – and remain even after, with good days alternating with bad days. This is normal and expected.

For h energy and i chemo brain P Write things down and prioritize your lists. P Reduce work time if you have to (if applicable). P Exercise your brain, do word puzzles, learn something new. P Get plenty of rest, including at least eight hours a night, plus naps. P If feasible, take multiple short (30-minute) naps throughout the day. P Drink eight cups of water each day and have ﬁve or six small meals or snacks.

P Maintain a healthy diet. (See pages 48-52) P Consider relaxation techniques such as meditation. P Try to keep a regular schedule. Plan your day – routine helps. Repeating out loud what you P Change how you do want to remember things (i.e. sitting can help your while washing the mind hold on to dishes). information. PLet others help you.

HYDRATIONS

NC A L G A AT

Hydrations can help with some of the most common side effects of chemotherapy (i.e. vomiting, diarrhea, loss of appetite and taste changes). If fluids taste different than they did before treatment began, then a person isn’t going to drink as much water as they Hydrattions should. If a patient is experiencing episodes of vomiting or diarrhea, they’re losing those fluids that their body relies KAT-WRITE on. A simple one hour appointment at the cancer center for a liter of fluid can make a world of difference. Usually hydration isn’t something that’s added to a patient’s initial plan of care. It’s based on how the patient tolerated their treatment. Sometimes their doctor will add some type of anti-nausea medication to their hydration if nausea or vomiting is present and they’re unable to take any medication by mouth. If you have questions about hydrations, speak with your oncologist and nurses. C.A.R.E. – 45

THE JOURNEY: Fight Fatigue & Chemo Brain

Fight Fatigue & Chemo Brain

Getting on track There are a lot of names, dates and details to remember when you’re navigating cancer treatment. Get a notebook to record current medications, jot down reminders, note how you feel and write down questions for the medical professional you will see. Take the notebook to every appointment. THINGS TO WRITE DOWN:

R Questions for your medical team

R Names of medical team

R Who to call when

R Names of

medications

R Medications you

have “as needed”

R Dates of all

surgeries/ hospitalizations or ER visits

to schedule or reschedule treatment

R Who to call to check on a prescription

R List of scans with dates

R List of chemo

treatments and dates

See page 70 to learn about Cancer Treatment Organizers and get one of your own.

• Text “LIVING” to 70989 to download the brand new LivingWith free app to help you stay organized with cancer. • Download the “Pill Monitor” app for medication reminders. • Ensure that all important numbers are named and saved in your and your caregiver’s phone.

Keeping your mind focused on non-stressful activities can help with general concentration. For a free puzzle book to get mailed to you contact care@sfnewmexican.com or 505-690-6308

KACIE CAPPS, RN ONCOLOGY NURSE A CLOSER LOOK AT MANAGING IT ALL

HELPING TO MANAGE IT ALL:

Each journey is different. What worked for someone else may not work for you and that’s ok. Keeping a journal or binder can be helpful.

A Dose of Info from The Pros

We give patients and families SO much information. Let all of the notes be what you can use as a reference, to look back at when you have questions at home or are unsure of which anti-nausea med to take, for example. It’s important for patients to note how they are feeling during treatment, to help keep track of the process. Managing all of the information is one way that a patient patient or family member can feel empowered and own a sense of control over the situation. To learn more from & about Kacie Capps, TN CHRISTUS St.Vincent Regional Cancer Center: visit careguide.info

C.A.R.E. – 46

SLEEPING PROBLEMS Unsatisfactory rest has the tendency to amplify the effects of fatigue and chemo brain. Disruption of sleep happens when any change occurs to your usual sleeping habits.Those who are getting treatment for cancer often get tired easier, causing them to get more sleep. Sometimes the opposite happens as well, and people have trouble sleeping.

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A AT

REASONS FOR CHANGES IN SLEEPING HABITS INCLUDE: P Anxiety P Worry P Pain P Depression P Pain P Night sweats P Side effects of medicines or treatments

With so much going through your mind and the physical impacts of cancer, sleep problems are common.Treat this like you would any other side effect. Seek ways to remedy the situation.You need all of the energy that you can to confront your diagnosis, and sleep is crucial..

Tips for getting better sleep – Avoid caffeine in drinks (like coffee, tea or soda) or even foods (like chocolate) at least six to eight hours before bedtime. – Sleep as much as your body tells you to, but try to. Try to exercise at least once a day but not two or three hours before bedtime. – You may need naps, but try to keep them short (less than an hour) before 3 p.m. – Drink warm milk or decaf tea before sleep. – Take a warm bath before bedtime.

Caregivers can help by keeping the room quiet and comfortable, offering gentle backrubs or foot massages near bedtime, offering to provide light bedtime snacks and keeping the sheets clean and free of wrinkles.

– Don’t use your bed to work; reserve it for sleep – Turn off all electronics (i.e. laptop, television, cellphones, iPad) at bedtime – Follow a routine to help you relax before sleep (i.e. reading or listening to music). – Make your bedroom comfortable, dark, quiet and not too warm or cold. – Go to sleep at the same time each night and get up at the same time each morning. – Don’t eat a heavy meal late in the day, but a light snack before bedtime is okay. – Make sure your room is dark at bedtime and use a flashlight when you get up for any reason. Avoid turning on the regular lights. – Talk to your healthcare team about relaxation therapy or getting a referral to a hypnotherapist. (See page 86 for more information)

C.A.R.E. – 47

THE JOURNEY: Fueling with Food

Fueling with Food

One common side effect of treatment is a change in appetite. Things might not taste “right” or the same to you. Don’t be too hard on yourself if you can’t eat what you used to. Chemotherapy DOES often make food taste different. Experiment with your diet and talk it over with your cancer care team. Eating the right kinds of food can make a big difference in how you feel. Nutrition is an important part of navigating through cancer and you might need to improve your diet to help build up your strength and withstand some of the side effects.

CALORIES = ENERGY

PROTEIN = REPAIRING DAMAGED CELLS

Dairy can include low-fat milk and cheese.

Fats in avocados, peanut butter, nuts and seeds, fatty fish such as salmon, olive oil, tofu and soybeans help store energy, insulate body tissues and transport some types of vitamins through the blood.

Select Whole Grains for good health. Fresh fruits are carbs and should be included in meal planning. Vegetables are carbs and should fill half your plate.

Protein such as dairy, fish, poultry, lean red meat, eggs, peas and lentils helps heal tissues and fight infection.

Carbohydrates such as fruits, vegetables and whole grain pasta, quinoa, breads and cereals give the body the fuel it needs for physical activity and proper organ function.

PROBLEM

SOLUTION

Overwhelmed by Food

Use smaller plates. A large plate, full of food, may seem like too much, especially if you are tired. Or even try six smaller meals a day, if it’s easier.

Things taste foreign and metallic

Eat with plastic or wooden utensils. Also try to avoid aluminum containers or canned food.

Food seems to lack flavor

Add a squeeze of lemon or lime, additional spice or herbs or increase the sweetness of foods.

Healthy diet Follow a healthy diet high in protein with plenty of fruits, vegetables and healthy fats for as long as you can while on treatment. With this in mind, weight loss can be far more dangerous to outcome than just eating to maintain weight, even if the choices do not always seem “healthy.” A lot of people come in wanting advice on what seems to be following some extreme diet. They are often surprised when they are recommended to follow a basic one. Overall, everyone is different, and changes in taste may affect each patient differently.

Talk to your healthcare team about meeting with a nutritionist if you and/ or your caregiver have concerns regarding your diet during treatment.

Create your own menu Set a realistic yet nutritious daily meal plan for yourself: BREAKFAST Low-fat yogurt or cereal with fat-free milk, or whipped cream on a waffle

SNACK Cup of pudding, some gelatin or a piece of fresh fruit, peanuts

To maintain energy, eat high-calorie snacks (peanuts, cheeseballs) every few hours and don’t wait until you feel hungry or for meal time. A short walk after you eat will help your digestion and give you more energy.

LUNCH Egg salad sandwich, avocado, macaroni and cheese or a hearty soup

SNACK Small bag of trail mix, crackers, cheeseballs, or piece of bread with peanut butter

DINNER Baked fish, lean red meat, baked potato with butter, peas or a casserole or stew Staying hydrated is important for your body’s organ function and body cells. Strive for at least eight glasses of fluid each day. That doesn’t always mean water is ALL you can drink. TRY THESE HYDRATING ALTERNATIVES: Caffeine-free iced tea/soda Ginger ale Ice pops | Gatorade Herbal tea | Jello Soup broth | Decaffeinated coffee Peppermint tea | V8 Juice Water with: lemon, lime, berries, mint, watermelon, etc.

C.A.R.E. – 49

NC A L G A AT

To remedy certain side effects of treatment MOUTH SORES If mouth sores make it hard to eat solid or acidic foods, try smoothies made with ice cream, protein powder and fruits such as bananas. If you have trouble swallowing try taking sips of water while you eat. LOW BLOOD CELL COUNT If your immune system (white blood cell count) is down, be extra careful about cooking food thoroughly and making sure the kitchen is sanitary. WEIGHT CHANGES Although small weight changes are normal, do your best to stay at a healthy weight. To avoid excessive weight GAIN stay physically active. To avoid/excesseive weight LOSS – try adding Ensure to milkshakes. SWEET TOOTH? Have a sweet tooth? Add jelly and honey to breads and crackers, jam on fruit, or ice cream as a topping on cakes. DENTAL HEALTH Visit a dentist to check your mouth’s health prior to treatment, as well as after, in case there are any changes in your teeth. JOY OF EATING Try not to confuse the joy of eating with nourishment. Make sure you are eating delicious, balanced meals with just the occasional indulgent treat. NAUSEA Try ginger tea, or have smaller more frequent meals (five to six a day). DRY MOUTH • Brush your teeth after each meal and at bedtime. • Suck on ice, popsicles or lemon drops. • Use a cool mist humidifier to moisten room air. • Rinse your mouth (don’t swallow) with salt and baking soda four to six times a day (1/2 tsp salt, 1⁄2 tsp baking soda, cup of warm water). • Moisten foods with broth, sauces, butter, dressings and avoid dry foods THICK SALIVA Salivary glands may be affected by certain medicines and treatments. If you have saliva issues, try: • Avoiding foods that stick to the roof of your mouth. • Drinking small sips of water or tea often. • Eating/drinking warm liquids (soup, hot chocolate, etc). • Being cautious with milk products. • Keeping your mouth clean by rinsing with baking soda mix (see above).

Food remedies TRY: TO IMPROVE:

Turkey Peppers Tomatoes/onions Apricots Almonds Oats/prunes Eggs Cauliflower/lemons Cilantro/yogurt Cashews Celery Cabbage Carrots Squash/green beans Walnuts Cantaloupe

--> --> --> --> --> --> --> --> --> --> --> --> --> --> -->

mood immune system/hair growth blood sugar levels anemia skin repair bowel function damaged tissues/brain health and immune cells anxiety level sleep quality red blood cell production blood pressure/excess fluid peripheral neuropathy constipation tissue repair/wound healing protein level white blood cell level

C.A.R.E. – 50

Attention all cooks Try preparing multiple meal options, just in case one doesn’t taste Be sure to wash soft skin fruits and right to your loved one. DO NOT TAKE IT PERSONALLY if vegetables (three part water, 1 part you serve them something they can’t eat. Eating during treatment vinegar) before you cut them. Use is a trial and error practice for everyone involved. a different knife for different foods. Also, do not cross-contaminate If your loved one has a preference of brand for any product with any raw meat anywhere. – regardless of whether or not you believe there’s a difference – always honor those wishes by using the brand of their choice and simply encourage them to eat as best they can. Don’t challenge them on what they feel tastes best to them!

Sample recipe STEAK AND VEGETABLE FAJITAS Targeted Side Effects:

Fatigue, anemia, chemo brain, peripheral neuropathy Ingredients: (Makes 4 servings) 4 large or 8 small corn tortillas ¾ pound skirt or flank steak (cut in thin slices) ¼ teaspoon kosher salt 1 tablespoon olive oil, divided 1 medium yellow/white onion, sliced 1 bell pepper sliced into thin strips 1 medium tomato, diced ½ cup chopped cilantro, no stems 4 tablespoons nondairy, non-soy cheddar cheese, shredded Preheat Oven to 275 F

1. Warm tortillas on stove then place in aluminum foil and put in warm oven 2. Heat olive oil in large frying pan, add steak and salt/pepper 3. Add tablespoon of water to pan, cover, cook for 3 minutes. Remove and place in warm oven 4. Add onion, peppers and salt to frying pan. Cook 4 minutes, stirring often. Add tomatoes and cook until soft. 5. Take steak out of oven, cut into thin slices, stir into pan with vegetables. Heat through. *Pepper to taste

Complete Guide to Nutrition for Cancer Survivors: Eating Well, Staying Well During and After Cancer The American Cancer Society

For more information on nutrition and sample recipes to try during treatment: cancer.org or eatright.org

Food at your doorstep DASHING DELIVERY *Local meals straight to you. Participating restaurants: Santa Fe Bar & Grill | Cowgirl | Atrisco Café & Bar | Thai Café Counter Culture Café Rooftop Pizzeria | Pizzeria A Lino | La Choza Lu Lu’s Chinese Cuisine |The Burrito Co. + more *$6 minimum delivery charge | Call 505-983-DASH | dashingdelivery.com to review menus & order food online! MEAL DELIVERY SERVICES There are programs that help with meal planning by delivering all the fresh ingredients you need to make delicious meals in exactly the right proportions. Conveniently order weeks’ worth of food online so you can prepare delicious, inventive meals at home. blueapron.com | hellofresh.com | postmates.com C.A.R.E. – 51

When dining out Photo by: Jason Stilgebouer

Whereas you might not always have the energy to go out to eat, know that if you feel up to it, you can still enjoy a meal at one of your favorite local spots. In order to ensure that the restaurant environment doesn’t harm your health goals during treatment – make some adjustments. There are ways to make that experience conducive to your health as well as providing that normalcy and comraderie of eating out, that many enjoy.

Tia Sophia’s | Santa Fe Plaza

Eat early to avoid crowds. Ask that food be prepared fresh in fast-food restaurants.

Ask for single-serving condiment packages, and avoid self-serve bulk condiment containers. Do not eat from high-risk food sources, including salad bars, delicatessens, buffets and smorgasbords, potlucks, and sidewalk vendors. Do not eat raw fruits and vegetables when eating out. Ask if fruit juices are pasteurized. Avoid “fresh-squeezed” juices in restaurants. Be sure that utensils are set on a napkin or clean tablecloth or placemat, rather than right on the table. You can ask for plastic utencils as well. If you want to keep your leftovers, ask for a (non-aluminum) container, and put the food in it yourself rather than having the server take your food to the kitchen to do this. Ask for an extra plate to put a smaller portion of your food on, so as not to get overwhelmed.

MEAL TRAINS

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A AT Meal planning for yourself might be the last thing on your mind after a diagnosis, during rounds of treatment, around surgergies or procedures, etc. This is a wonderful way for others to do something, while still being efficient in the support. Meal trains help to ensure that there aren’t nights where too much food has been received, from well-intentioned friends, while still ensuring that your (and your caregiver’s) meals are taken care of during the times you need it the most. For more information visit mealtrain.com

MISSION NUTRITION: HEALTHY EATING DURING CANCER TREATMENT WORKSHOPS The second Wednesday of the month 1:30 -2:30 p.m. Feel better during your treatment by learning to maintain your weight and muscle. You might also respond to treatment better, have fewer breaks in your treatment and keep the cancer from coming back. It will cover various topics related to food and your body during cancer treatment such as; eating enough calories, protein, sugar, phsyical activity, poor appetite, nausea/vomitting/ altered taste/smell. These workships are open to anyone regardless of where they are being treated. UNM Comprehensive Cancer Center Room 1604 Contact Ernestine Trujillo 505-925-0182 Offered by the UNM Cancer Center’s Patient & Family Services. C.A.R.E. – 52

“I’m a Survivor”

These words make a strong statement and mean different things to different people. Some people use the term survivor to refer to someone who has completed cancer treatment. Some people use the word to refer to anyone who has ever been diagnosed with cancer. Others call a person a survivor if he or she has lived several years past a cancer diagnosis.

The American Cancer Society believes that each person has the right to define his or her own experience with cancer and considers a cancer survivor to be anyone who describes himself or herself this way, from diagnosis throughout the rest of his or her life. The most important aspect of surviving is doing one’s best to thrive regardless of your status in the journey. Cancer or not, let having the best quality of life as possible remain your focus.

Remission

It is natural to strive to get back to your life “BC” (before cancer) right away. You might not get completely “back to normal” but you will create a “newer normal” – so be patient and gentle with yourself as these adjustments take place.

The period of time when the cancer is responding to treatment or is under control, formally defines remission. In complete remission, all the signs and symptoms of the disease go away and cancer cells cannot be detected. Partial remission is when the amount of cancer in the body is reduced. Remission can last anywhere from many weeks to many years. One person could have many remission periods if there is a recurring cancer. One may consider a cancer that isn’t growing or where there isn’t any active treatment as a remission period. Just like your cancer, you get to determine what “remission” means to you.

In My Shoes... Lauren

Having ended treatment in 2015, I’m still on the ‘fast track’ for check-ups...every 6 months still (as opposed to annually). Any one who runs the gauntlet of cancer treatment deserves a title...and ‘survivor’ is a good one. A person who beats cancer survives the disease as well as the treatment! ON THE JOURNEY NOW I think the biggest thing I have to come to terms with is my mind. Every little ache, pain, or body deviation from what I consider ‘normal’ strikes a chord in my brain. The little voice in my head yells. “What if it’s back? Is your cancer back?” It is the tickle in the back of my brain that never goes away. To read more only about Lauren’s story, visit careguide.info C.A.R.E. – 53

THE JOURNEY: Surviving and Thriving

Surviving and Thriving

The transition phase There isn’t a transition period that takes you from treatment to “survivorship.” It is common for people to feel lost during this change. Many people may put their emotions on hold while they are undergoing treatment. Afterward there can be an emotional “hangover” that needs to be processed. You might feel isolated, and that’s natural. It’s not so much about getting back to normal but figuring out what is normal for you now. “Your next appointment will be in 3 months?”

? ????

For some, this may be music to their ears – to others it can lead to uneasy feelings. You’ve had all of this oversight – and now you are seemingly left on your own. The feelings you and your caregiver might be experiencing aren’t much different from those of kids on their first day of kindergarten or college. The independence can be a scary thing and that’s ok to acknowledge.

The appointments might not be something that a person longs for once they are no longer necessary. However, the confidence that someone is consistently monitoring your health and the overwhelming sense of community from experiences like chemotherapy infusions or radiation sessions are both factors that may contribute to your “missing” certain aspects of your previous healthcare. It is completely normal to feel uneasy as things slow down in terms of your care. It’s normal to be affected when all the activities and attention are suddenly taken away. Use the time without intense treatment to relax and recuperate from what your body went through.

“Checkup anxiety” With every piece of bloodwork, every test, every scan – there may be an innate fear of your cancer coming back, growing, or a new one forming. As time goes on, the restlessness may get better. Accept that you (and loved ones) may be irritable for a while. Cancer impacted your life, so it makes complete sense to be scared about the possibility of it returning.

In My Shoes...

As a sister: Ashley & Michael

STATUS UPDATE Our prayers were answered in May when Michael found out he was cancer free! It hasn’t been an easy journey though - the chemo left him with neuropathy in his feet and he isn’t able to take any medication because it causes him to get too depressed. As a result he’s been in a lot of pain - especially in the morning and at night. He finally was able to get back to work again but eventually had to take a break because he couldn’t be on his feet that long and it was very tiring/painful for him. MICHAEL’S NEW COMAPANION He recently got a german shepherd which has helped TREMENDOUSLY with the depression he started to have once he was in remission. The dog’s name is Avery and he’s nine months old! Michael is in such a better place now having the dog as his little sidekick! To learn more online about Ashley and her brother Michael, visit careguide.info C.A.R.E. – 54

In My Shoes...

Mary Helen

ON SIDE EFFECTS After the chemo, when my hair came out, I didn’t have the beautiful curly hair everyone told me I would have – my hair came out very fine and straight. For someone who has had a lot of hair and have had to get it thinned out periodically, I felt it was the worst part of the whole experience. I’ve since accepted how my body has changed. The important thing is that “I am ALIVE!!!” RECOMMENDATIONS TO OTHERS I believe that people starting on their cancer journey should “keep the faith”. God is great and miracles can and do happen. Believe that you WILL be a survivor. A positive attitude is imperative. If they don’t have a built-in support system in their family, they should join a support group. Reach out to people you know when you need help, you’d be surprised who will step up to the plate to help. Most people don’t know what to say, much less do – you should let them know what it is you need. Don’t try to go it alone. When I was diagnosed with cancer, I told myself that I was going to be one of the survivors and I was! To learn more online about Mary Helen, visit careguide.info

In My Shoes...

Michael

ON HIS LIFE I know I am a lucky man. I’m very appreciative of my caregiver, my wife, our families and our friends, and Cancer Foundation for New Mexico. I am thrilled to be enjoying my life. Four years as a pancreatic cancer survivor...and counting. It is sweet and worth all the effort. Let the journey continue! TO OTHERS Cancer is a boxing match where you know you are going to get knocked down every round. You just have to get back up, go to your corner and get ready to do it again. It feels like a test to see, “How tough are you?” Keep up the good fight and keep hope alive. To learn more online about Michael’s story: visit careguide.info C.A.R.E. – 55

JENNIFER PORTER, NP

A Dose of Info

NURSE PRACTITIONER ON SURVIVORSHIP:

from The Pros

Survivorship starts at diagnosis and continues for the rest of the cancer patient’s life. Cancer and its treatments change people. I have often heard, “Cancer has been good for me.” It can help people live their life more fully. It can also be a scary and overwhelming time. We encourage everyone to talk with those who have been through or are going through their same experience. Live your life! Play, laugh, and have fun!

A SURVIVOR’S GUILT

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A AT When people are through with treatment and their health has improve, sometimes there can be a feeling of uneasiness in this milestone. Many times it is that they are empathetic to the pain that they know others are still going through. Sometimes people feel a sense of “guilt” that their journey was “easier” than others.. or so they feel. A sense of discomfort could also exist if people are confronting cancer together. They spend time supporting each other and being able to relate to each other during the parallel journeys. However, if the health of one improves while the other remains stagnant, or even worsens – the dynamic can change. Know that your good health or recovery is NEVER something to feel bad about. Although it may difficult, continue to try to limit any and all comparisons you may have. Just as everyone’s cancer is different, so are the factors that lead to path each patient travels. Your life and health is just as important as anybody else’s. Now, take that guilt and reframe it into empathy that helps lead you into being the support others – the kind of support that you can now provide is precious, so focus on that.

Paths to Health, Cancer: Thriving and Surviving Program A Free Six-Week Workshop This class provides education and support to patients who are, or who have undergone, treatment for cancer and their caregivers SPRING: Fridays, April 6 – May 11, 2018 | 11 a.m. – 1:30 p.m. FALL: Fridays, October 12– November 16, 2018 | 11 a.m.– 1:30 p.m. Holistic Health & Wellness Center | 490-B W. Zia Roadd, Suite 4, Santa Fe Contact Karen Gano, LCSW at 505-913-5731 | karen.gano@stvin.org Living With & Beyond Cancer Conference Saturday, April 28, 2018 FREE Full day of free educational and entertaining events. Includes breakfast and lunch. Sandia Prepatory School | 532 Osuna Rd, NE Albuquerque For more details and to register: cancersupportnow.org or call 505- 270-2462

C.A.R.E. – 56

In My Shoes...

Margaret

At the beginning I wasn’t hearing clearly everything being said to me because I was scared. I was very disappointed in the days and weeks following. That is when it made clear to me that this diagnosis is treatable but not cureable. MOTHER/DAUGHTER BONDING My daughter who left New Mexico to go to college out of state and remained out of state since 2003, has recently moved back to be with me. We now are together again, celebraing Mother’s Day, Valentines Day, you name it and it makes me so happy. ADVICE TO OTHERS Handle your cancer diagnosis the way you want to BUT to remember that what you put out in the universe is what you get back so as hard as it may be, to try and remain positive. I have quite a few positive affirmations I take with me to my treatments and spend the entire time meditating on them. ON SURVIVORSHIP I am still going through treatment and will do so as long as necessary. To me survivorship is still being here after days, months or in my case - years, of treatment and seeing scan reports coming back very good no matter what type of cancer you may have. To read more online about Margaret’s story, visit careguide.info

VOICES FROM EXPERIENCE – It may take a long time to trust your body after it betrayed you. Cancer isn’t a light switch you can turn off. – It could be up to a year before you start feeling better and some side effects are chronic. – Focusing on preventative care and getting imaging done as needed is important since your cancer (relapse or new) susceptibility is higher.

– I find that being terrified of the cancer returning is my deepest fear. I have young children and can’t let this happen again. – I was confused and scared when I was told I was cancer-free. I wasn’t ready to be done. I was scared not to see my doctor anymore. – All-in-all I had three surgeons for the one surgery, so honestly, I expected to hear the news that my scans were clear.

– The time it takes for your hair to grow back depends – Though my fear of reoccurance is real, I tried to find on the person. blessings in my experience. – When I heard the news that I was in “remission,” that – Cancer holds no place in my life anymore. was not acceptable. The “R” word was not what I wanted to hear. I wanted to hear the BIG “C” word... – It will always be in my mind but I am moving on with CURED! As time has gone by, I now comprehend why my life and putting cancer behind me. I was only told remission. It’s been 18 years since – Stay in “survival mode” each and every day. those sickly days and I still have not been told I’m cured. But in my positive thoughts, I believe “I AM – Put your focus on enjoying your life to the fullest CURED!” every single day – Know that you have a support system – there are so many people who have shared your experiences, will stand with you, and will hold your hand.

To share your survivor experience: visit careguide.info

C.A.R.E. – 57

THE JOURNEY: Cancer...Again

Cancer...Again

Having cancer one time seems like one too many, so having a second diagnosis can seem unfathomable. Whether a new type (second primary) has developed or the same kind (recurrence) has grown back, it ignites many of the same feelings as the first diagnosis. Your oncologist will talk with you about different treatment options and how effective each one is likely to be. Much like the first time, one wants to ask similiar questions about the plan of action (see pgs 22-25). Be sure you understand the goal of each treatment you are taking. You might also decide to get a second opinion this time. Treatment decisions recurrence or a second cancer are based on: P Type of cancer

P How well you tolerate treatment

P Your overall health

P Length of time between the original

P Your personal values and wishes for

treatment

P Status of original cancer

diagnosis and the recurrence

P The cancer’s aggressiveness P Your age

Attempting to handle it all again Although it may be difficult, try your best not to panic if you learn about a recurrence or a second type of cancer. Just as you did before, talk to your doctor if you are worried about treatment. You need to feel comfortable with this course of action and approach the journey, like you did the first time, the best way you can. Discuss all choices with your cancer care team, those in your support group and especially with members of your family. Once again, only you can make the best decision for you.

In My Shoes...

Cancer is something that one can never “get used to.” Some feelings of helplessness will return with an additional diagnosis – and that’s OK. Feel free to accept those emotions again without frustration.

Aggie

I was cancer free for 23 years and two years ago I went for my annual mammogram. The next day I got the dreaded call “we need you to come in for additional tests.” The tests were positive, again, I couldn’t believe it. They told me I would need a mastectomy. My old memory of the pain I had experienced scared me. I thought to myself, “will I make it this time?” WHAT HELPED With the support of my family and faith I scheduled my surgery and recovered quickly. When you here the word “cancer” you feel it is a death sentence, but there is so much advancement in the treatment that the rate of survival is amazing.

BRINGING AWARENESS I believe that annual check ups and early detection is the key to survival. I joined the Making Strides Against Breast committee to inform everyone how truly important it is to have your annual exams. I am living proof. To see pictures of Aggie her story online: visit careguide.info C.A.R.E. – 58

Cancer can be a devastating blow on so many levels – to those living with it and those around them. No one is expected to see cancer as “a blessing” or to see the glass half-full all the time. There may be gifts (present for some and more present for others) provided by a cancer journey. A cancer diagnosis is a very personal and different situation for everyone. Cancer truly is a ride, one with highs, lows and unpredictable twists and turns along the way. It also can be a journey that builds strength and helps people to reflect on what is most important to them, and igniting growth in some direction. There is a potential to find new perspectives, ambitions, careers and most of all, deeper relationships with people.

In My Shoes...

Carolyn & Paula

In My Shoes...

Trish & Jackie

FRIENDSHIP IN THE FIGHT Paula has been in remission for 4 1/2 years and Carolyn for 20 years. Their friendship they built prior to Paula’s diagnosis just got stronger and stronger since Carolyn knew what to expect and was her sounding board and rock. We have been so grateful to have each other in our lives. The positive energy we each have helps the other when times were low. Our faith and the way we live our lives through God, thanking God daily for our health and our many blessings is a ritual we both have and is the cornerstone of who we are. Thinking back to what we call the “ugly” days will never be forgotten. But, we try to think on the positive side (easier for Paula since she has that special positive trait instilled in her). At the time of the diagnosis and experiencing the treatments, no one can admit it’s a fun time. But looking back, we understand why it happened to us. It has definitely made us both better ladies.

CANCER & CAMARADERIE TRISH: I have known Jackie forever! We are from the same community, but even though I knew her family and it was when she was about to take her boards that we got to know each other. I was working at CHRISTUS St. Vincent Hospital on the oncology floor and I knew Jackie was a new RN. I thought she would be a great addition, so I encouraged her to apply there. I landed out being able to precept her to the unit and thus began her career as an oncology nurse. We’ve worked together in different capacities, in different places ever since! JACKIE: I started in Oncology completely by accident. But, it only took me one year to decide that this was the field I wanted to specialize in. Trish was actually my nurse preceptor when I was a brand new nurse. So everything I know is all her fault! BOTH: The strength, devotion, belief and character of the patients we work with is truly humbling to witness. They remind us what is most important in this life. C.A.R.E. – 59

THE JOURNEY: Found in the Fight

Found in the Fight

“How can I look at the bright side of things?”

Not one bit. Cancer can be this enemy that you resent, and that’s totally, completely and utterly appropriate. Nothing says you have to find something positive in all of this. You didn’t ask for cancer – this wasn’t what you ever wanted, so you don’t have to feel the pressure to not feel down about the situation. Feel and think what feels natural to you and, ultimately, what feels best and will help you get through this.

“You don’t have to.”

VOICES FROM EXPERIENCE – Cancer had me reassess what was important and find a new purpose of the things and people that truly make me happy. It enhanced my way of living and gave me a sisterhood with some amazing women who can understand my journey.

– Cancer was not a gift

– Having cancer gives you a better appreciation for life, knowing how truly fragile it is. Let appreciating life and all our blessings be something that hopefully we can all aspire to truly embrace every day.

– We loved our life, we loved our family, we loved our little house. We never took our blessings for granted. We don’t need to be given some “cosmic life lesson’. This isn’t fair.

– Since remission, I have an enhanced belief that my place is to help more than ever. I don’t want anything in return. God gave me my life back. Now it’s my turn to help others. – Having my mom and two other women in my family diagnosed with cancer has made me realize how careful I need to be with my body. I have become more diligent about going to the doctor and making sure I take advantage of any opportunities to take care of myself.

– My brother’s diagnosis brought my family closer together. We just all wanted to get him better. – I don’t take life for granted anymore.

– I didn’t gain anything positive positive from my diagnosis. It was not a blessing in my life. – My family has gained a greater perspective. We don’t sweat the small stuff anymore. My son is even now in medical school to help others because of my experience. – I realized who my true friends were and started to value and appreciate them so much more. – I learned what supporting other women looked like, and what empowerment looked like.

– Cancer was a gift.

In My Shoes...

My dad’s cancer gave me time with him. I was blessed with years of chatting and laughing during chemotherapy infusions…road trips and flights to his favorite places…watching movies in his hospital room… nights of talking until one or both of us fell asleep…and valuing every minute together so much more. All-in-all, no matter what those scans ultimately said... my dad WON his battle. His victory came by how he made those around him feel, his appreciation for every day, and ultimately how he chose to live and walk through life. He lived and he loved. I couldn’t be more proud to have been able to stand witness to this. So, am I annoyed at cancer? Absolutely. But I truly can’t be mad at it…because if I were, I’d be forgetting all of those special moments… those valuable memories…and that extra intentional time I had with him. Time I wouldn’t give back for absolutely ANYTHING in the world. C.A.R.E. – 60

Not everyone has someone in their life that they would identify as their “caregiver.” You might have family and/or friends support you and attend appointments with you, or you might feel like you are navigating this seemingly on your own. Know that whether you have a caregiver or not you DO have support in and throughout your cancer journey. You actually have a plethora of people who work to help lighten your load and support you (and your caregiver) through the challenges that come with cancer. Let your doctors and nurses take care of your physical being. Let social workers or counselors and patient navigators help you find the resources that best fit YOU while attending to your emotional concerns, counseling and crisis management.

KAREN GANO, LCSW ONCOLOGY SOCIAL WORKER

There is holistic support that is available to you – physically, emotionally, psychosocially, financially, and spiritually at the CHRISTUS St. Vincent Cancer Center.

A Dose of Info from The Pros

At the time of your diagnosis, during treatment, at the point of a possible recurrence, or during any crisis in your life…Karen is there for you for all of these concerns. She will act as the liaison to get connected with the various programs and services available to you, based on your individual experience. With 25+ years of experience, she knows how to create a team and safety net for you to depend on and find networks to connect with. She can accompany you to doctor’s visits for those without a caregiver so that you don’t feel alone. She has a passion for social work and has compassion to help those patients, families, and caregivers in need. She recognizes that everybody’s story is different and will work with you to determine what resources would be best suited for your life and what is important to YOU. HER ROLE: “The best thing about my job is that I have the opportunity every day to make an impact and difference in people’s lives by evoking the principles of kindness, respect and compassion,” TO PATIENTS: “I’m here to support and advocate for you. I believe in your right of selfdetermination. I will listen, discuss, and explore things with you and make recommendations. Acknowledging what’s important to YOU. I am passionate about providing you with helpful tools and meaningful resources. Overall, know that I’m here to listen, acknowledge, support, advocate for you, and to be a compassionate, resourceful, empowering member of your team on your journey.” Paths to Health, Cancer: Thriving and Surviving Program This class provides education and support to patients who are, or who have undergone, treatment for cancer and their caregivers A Free Six-Week Workshop SPRING: Fridays, April 6 – May 11, 2018 | 11 a.m. – 1:30 p.m. FALL: Fridays, October 12– November 16, 2018 | 11 a.m.– 1:30 p.m. Holistic Health & Wellness Center | 490-B W. Zia Road, Suite 4, Santa Fe Contact Karen Gano, LCSW at 505-913-5731 | karen.gano@stvin.org 505-913-5731 | karen.gano@stvin.org Free to all those associated with the CHRISTUS St. Vincent Regional Cancer Center Learn more about Karen online at careguide.info C.A.R.E. – 61

PROGRAMS & RESOURCES: Helping You Along

Helping You Along

ONCOLOGY PATIENT NAVIGATOR

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I will advocate for you and serve as a medically knowledgeable friend, committed to supporting you through your cancer journey by: • Helping you and your family understand your illness and treatment plan. • Assessing and identifying any barriers to receiving the care recommended by your provider. • Connecting you to resources and supportive care staff and services • Providing compassionate support to alleviate stress and anxiety. • Facilitating the communication among you/your family and healthcare providers. • Ensuring your questions, concerns and clinical issues are successfully resolved • Assisting you in making informed decisions about your care through education and coaching.

BETH CARLOZZI PhD, RN, OCN

505-913-3061 | beth.carlozzi@stvin.org free to all those associated with the CHRISTUS St. Vincent Regional Cancer Center

Without a caregiver? If you don’t have someone you would consider your caregiver, it’s extra important to take the steps necesary to get the support you need. Never feel like you have to handle your situation alone. TRY TO: • Determine your needs • Communicate with others about how they can help • Use the resources and professionals available to you

• Seek alternative options (i.e. home health care or community agencies), if necessary • Utilize local programs designed to make things easier for you

“How am I going to get a ride to my treatments?”

Road to Recovery® Program | Santa Fe For many cancer patients, getting to and from the doctor’s office or hospital for appointments is one of their toughest challenges. Every cancer diagnosis is a personal journey, but we want you to know that you don’t have to face it alone. This is a free transportation program to help alleviate your worries about getting to and from your cancer-related medical appointments. Volunteer drivers donate their time and the use oftheir cars to get you to and from the appointments you need to go to. TO GET A RIDE Simply call 1-800-227-2345 four days in advance of your scheduled appointment to request your ride. For more information visit cancer.org/roadtorecovery or call 1-800-227-2345. C.A.R.E. – 62

Help in the home There may be a time where your load, with or without a caregiver, feels too heavy. Additional support where you live is another way to help attend to your health needs. HOME MEDICAL CARE The main mission of home health care is rehabilitation, usually after hospitalization. Home health care also provides skilled nursing care to monitor symptoms of illness; monitor blood pressure, fluid status or blood glucose; give education about therapy; and make sure medications are being taken properly. HOME NON-MEDICAL CAREGIVERS In-home agencies provide that extra layer of care: meal preparation, light housekeeping, mobility assistance, medication reminders, personal care and companionship. The American Cancer Society also offers personal guidance during a patientâ&#x20AC;&#x2122;s cancer journey through their Patient Navigator Program. For more information: Contact Eileen Bilynsky | Patient Navigator eileen.bilynsky@cancer.org | 505-262-6018

C.A.R.E. â&#x20AC;&#x201C; 63

PROGRAMS & RESOURCES: Gain Support

Gain Support

People attend support groups because they are looking for Support groups don’t “fellow travelers,” others who really understand the experience always have to be about of caring for and/or loving someone with cancer. Some people sharing. You may just reject support groups because they are initially hesitant to listen if that’s all you talk to a group of strangers about something as personal and feel comfortable with. heart-wrenching as cancer. Some people are embarrassed that they cannot handle this trauma alone – know that you aren’t expected to. Perhaps this is the most demanding period of your life. Talking with people in similar circumstances can make a big difference. Cancer support groups are meetings for anyone touched by cancer and they are a good place to talk with others in similar situations.

About support groups Support groups can be comforting places for people undergoing cancer treatment, people who have loved ones with cancer and people who are caregivers. All of the following special support groups are free and offer a place where you can: P Share what it’s like to have cancer P Exchange and brainstorm tips about coping with cancer P Be around other people who understand and share what

you’re going through.

Surrounding area support groups LOS ALAMOS SUPPORT GROUP- NEW! Open to caregivers, family and friends of cancer patients, 2nd and 4th Wednesday of every month, 11 – 12:15 p.m., Betty Ehart Senior Center Conference Rooom, 1101 Bathtub Row, Los Alamos. To register or for more information contact the facilitator, Lori Padilla: pmlori@q.com CANCER SUPPORT NOW- Offers individual and group peer support for cancer patients, survivors and their loved ones. Contact 505-2550405 or visit cancersupportnow.org for a full listing of groups and services RENEGADES: BLOOD CANCER SUPPORT GROUP- For patients, survivors and caregivers affected by blood cancers, 1st Thursday of every month 7–8:30 p.m., Contact Jamie McDonald MSW, Oncology Social Worker, at 505-291-2006 PROSTATE CANCER SUPPORT GROUP: The 1st and 3rd Saturday of the month, 12:30 p.m.- 3 p.m. Prostate Cancer Support Association of New Mexico, 2533 Virginia St NE stee. C Albuquerque, nm 87110, 505-254-7784, pchel@pcsanm.org, pcsanm.org For a full listing of UNM Cancer Center Support Groups cancer.unm.edu/patients/patient-care/support-groups-programs/ C.A.R.E. – 64

Santa Fe area support groups TUESDAYS ***TOGETHER – A Group for Family & Friends of Cancer Patients: Every Tuesday 11 a.m.-12:15 p.m. The group addresses the unique needs of the caregiver and those close to a patient. it provides an opportunity to share experiences, feelings, and knowledge in a non-judgmental setting. HEAD & NECK SUPPORT GROUP: For those before or after treatment for head and neck cancer. The 1st & 3rd Tuesday of every month, 4 - 5 p.m. The Holistic Health & Wellness Center, 490 B. West Zia Road, Suite 4. Contact Kristin St. Clair, RN, 505-913-3825 SURVIVING SISTERS GROUP 2nd and 4th Tuesdays of every month. Contact Ms. Fred, 505-577-1032 WEDNESDAYS ***HOW WE HEAL: 1st Tuesday of every month, 1-2:30 p.m. It includes tips on how to navigate the system and be supported. ***LIVING WITH CANCER: The 2nd and 4th Tuesday of every month, 1-2:30 p.m. Those with recurrent or metastatic cancer can share their emotional and practical concerns in a confidential and empathic environment while addressing the concept of living well with a chronic illness.

WEDNESDAYS MYELOMA SUPPORT GROUP (for patients, caregivers and family) 1st Wednesday of every month, 11:30 a.m.-1:30 p.m., CHRISTUS St. Vincent Holistic Health & Wellness Center, Suite 4 RSVP at: 505-690-4597, benjamin4@cybermesa.com – FREE lunch provided – FRIDAYS SANTA MARIA DE LA PAZ CANCER SUPPORT GROUP 2nd and 4th Friday of the month 1:30 - 3 p.m., Contact Sr. Stella Maris at 505-629-4212 SATURDAYS ***EMPOWERING OURSELVES TO HEAL First Saturday of every month,10 a.m.-noon. A workshop for women with cancer that includes short meditations, sharing, self-care information and creative expression. ***PROVIDED BY & LOCATED AT: CANCER FOUNDATION FOR NEW MEXICO 3005 S. St. Francis Dr., Suite 3B Santa Fe, NM 87505 Contact Caroline Owen 505-955-7931 ext. 3 caroline@cffnm.org

VOICES FROM EXPERIENCE – I’m grateful for the experience of the group, even when I don’t say much, I still get a lot from the experience. – The generosity of spirit that I experienced in that hour was profound. It has helped me tremendously as my family and I help my sister through her pancreatic cancer journey. – This dual love is energizing and uplifting; you know you are loved and that you love. – There was so much that I learned, just from listening to others. It helped reinforce that all of my feelings were justified. Although we had different situations and were strangers – there was an instant comraderie that we all felt together. C.A.R.E. – 65

PROGRAMS & RESOURCES: Get Connected

Get Connected

Sometimes all you need is phone service and internet/Wi-Fi to engage with others. Check out these ways to virtually engage with others, in safe and often anonymous environments.

Visit careguide.info to quickly link to all of these sites!

Online support

American Society of Clinical Oncology Sites: ASCO.ORG CANCER.NET CANCER.ORG Provides information on treatment options, advice on coping with side effects and health insurance. From the home page -> Treatment and Support CANCER SURVIVORS NETWORK Join an online community by and for people with cancer and their families. Find and connect with others through the member search, discussion boards, chat rooms and private CSN email. You can also create your own personal space to share more about yourself by starting an online journal (blog), with photos, resources and more.

If you donâ&#x20AC;&#x2122;t have electronics, almost all local libraries offer free computer time.

My LifeLine.org Cancer patients and caregivers can connect with family and friends, allowing them to share their cancer journey, get support and focus on healing. When you set up a free webpage, you can share updates and photos with selected family and friends in one secure place; get the help you need by organizing meals, rides to treatment, and more through the Helping Calendar; feel empowered by messages of love and support from friends and family; review and share cancer resources vetted by experts. CANCERSUPPORTCOMMUNITY.ORG Online support group led by professionals, offering information on stress management. FREE SEMINARS: Go to LosAlamosCouncilOnCancer.org to watch seminars on numerous cancers and helpful topics SOCIAL MEDIA PAGES TO FOLLOW: Cancer Support Now | Livestrong CancerKicker.org | American Cancer Society Cancer Support Community Cancer Foundation for New Mexico Cancer Services of New Mexico

OTHER CREDIBLE SITES: cancersupport.org triagecancer.org cancercare.org nccn.org caregiveraction.org ihadcancer.com

VIDEOS: Youtube.com Cancer Survivor Channel Pinterest.com Cancer Inspirational Videos or Quotes

C.A.R.E. â&#x20AC;&#x201C; 66

App support THIS IS LIVING WITH CANCER This is a program that shares inspiring stories and provides people living with cancer and their loved ones the opportunity to plan, stay informed and even organize support from others. Text “LIVING” to 70989 to download or visit thisislivingwithcancer.com

Other resources DOWNLOAD SKYPE: skype.com Free video chatting with loved ones from afar

CANCER SUPPORT HELPLINE Volunteers with a personal experience of cancer provide one-on-one peer support seven days a week. Call 505-255-0405 or 855-955-3500

FACETIME: All iPhone users are able to video message using FaceTime. This is a great way to connect with distant loved ones. THE ASSOCIATION OF CANCER ONLINE RESOURCES Offers access to mailing lists for various issues. acor.org

caringbridge.org Free personal websites to stay connected to family and friends during illness. Post and receive pictures and messages privately online. It’s helpful for you or for a loved one to update everyone at once without feeling the need to individually tell people about your health. CaringBridge allows loved ones to keep up with your journey.

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American Cancer Society has live cancer information specialists 24 hours a day, seven days a week at 1-800-227-2345 to answer questions, share information for understanding a cancer diagnosis and help find local resources through treatment and recovery.

C.A.R.E. – 67

WHAT IF YOU COULDN’T AFFORD TO GET TO YOUR CANCER TREATMENTS? C.A.R.E. – 68

The costs of a cancer diagnosis are more than just medical. For countless northern New Mexicans, the costs of accessing

treatment in Santa Fe are not affordable. So they may not be able to get to treatment at all.

That’s where the Cancer Foundation for New Mexico steps in. We help patients

who may not have the resources to pay for transportation, lodging, and meals so they

can access treatment. To date, no patient who qualifies for our help has been turned away.

We also offer free support groups to all patients and caregivers to help them

through this journey. We offer four groups: • How We Heal is open to all people who have a cancer diagnosis • Together: A Group for Friends and Family of Cancer Patients, addresses the unique needs of the caregiver (Santa Fe and Los Alamos) • Living with Cancer for patients dealing with recurrent or metastatic cancer • Empowering Ourselves to Heal: A Support Group for Women with Cancer, a workshop for women with cancer To apply for assistance or to donate, visit

www.cffnm.org or call 505-955-7931, ext. 1.

TOGETHER, WE HELP SAVE LIVES C.A.R.E. – 69

PROGRAMS & RESOURCES: Programs and Assistance

Programs & Assistance

When you are overwhelmed with the disease, it can be hard to know where to go for resources. Whether it is finding means to travel to appointments, locating an affordable place to stay, getting help receiving food or simply finding the tools you need to help you, New Mexico nonprofits are here to offer support. If you are a northern New Mexican with cancer receiving chemotherapy or radiation treatment in Santa Fe, you may qualify for FINANCIAL ASSISTANCE financial assistance from the Cancer Foundation for New Mexico in these categories: • Mileage Reimbursement: Patients who travel to Santa Fe for their treatment may qualify for reimbursement based on the miles traveled from their home to the treatment center and back. • Lodging: Hotel Rooms in Santa Fe are provided to qualified patients receiving treatment and living at least an hour away from the treatment center. • Nutrition: Grocery cards can be used at participating stores to ensure nutritional meals for patients during treatment.

FREE FOR ALL CANCER PATIENTS • Free Support Groups See pages 64-65 for complete listing • Trained volunteers provide one-on-one support for patients and families in treatment rooms. • Spanish-speaking interpreter / translator can be arranged to help during exams and treatments. 505-955-7931, ext. 3 • To learn more about CFFNM or to donate, visit cffnm.org or call 505-955-7931, ext. 1; 3005 S. St. Francis Dr., Ste. 3-B, Santa Fe • For professional guidance and support: *Cancer Foundation for New Mexico, Caroline Owen, MA, LMSW, Patient Services Coordinator, 505-955-7931, ext. 3 HELP PAYING FOR MEDICATIONS

FREE PROGRAMS

The St. Vincent Hospital Foundation will assist with pharmacy costs of up to $1,500 per year for qualifying cancer patients. Ask your CHRISTUS provider to contact CHRISTUS St. Vincent Care Coordination at 505-913-4256 to arrange for information on how to apply. Cancer Services of New Mexico Free Family Cancer Retreat: SPRING 2018: April 20-22 Educational sessions on treatments, clinical trials, talking to kids about cancer, pain management, insurance and finances. See pages 72-73 for more information. Albuquerque Marriott Pyramid North, 5151 San Francisco Road. NE, Albuquerque – contact mike@cancerservicesnm.org or call 505-239-4239. Cancer Treatment Organizers: Free binder and tools to help manage and organize the paperwork associated with a cancer diagnosis Get one mailed to you for FREE by calling Cancer Services of New Mexico’s Stephanie Michnovicz at 505-999-9764. C.A.R.E. – 70

Programs

Hotel Partner Program: Through a partnership with local (Santa Fe, Albuquerque, Rio Rancho) hotels free or reduced-rate rooms for cancer patients and their caregivers traveling for treatment are available. Contact 1-800-2272345. If traveling to other states for treatment, seek out American Cancer Society’s Hope Lodge program. The Look Good Feel Better® program is a free, community-based workshop where beauty professionals teach those facing cancer hands-on tips to help them cope with the appearance-related effects of treatment. The program is a collaboration between the American Cancer Society, the Personal Care Products Council Foundation, and the Professional Beauty Association. To register, call 505-262-6016. (See pg 77) Road to Recovery program: Local volunteers for the Road To Recovery® program drive cancer patients to and from their treatments. That way patients can focus on getting well without the added stress of managing their own travel. Contact 1-800-227-2345. (See page 62) For more information about programs and services contact- American Cancer Society Program Manager, Shirelle Besse Shirelle.Besse@cancer.org or call 1-800-227-2345 Kitchen Angels: Apply for meal service for residents of Española, Los Alamos, Pojoaque and Santa Fe. Call 505-471-7780, kitchenangels.org. Meals on Wheels: For residents of Santa Fe County. Call 505-992-3094 See page 50 and 80 for food delivery options.

Transportation

UBER

Los Alamos and Taos

Santa Fe Ride Program: santafenm.gov/santa_fe_ride (Apply for $2 a ride) Uber: Download the app for realtime rides. Handicapped Placard: You can apply for a Parking Placard for Mobility Impaired Individuals from the New Mexico Motor Vehicle Division. Download and print the form, from mvd.newmexico.gov/forms.aspx or pick it up at the local Motor Vehicle Division office. You an/or your doctor can complete the application and return to your local MVD. Los Alamos Council on Cancer- A group of volunteer physicians, nurses, medical professionals, survivors and other interested people stribing to increase public awareness of cancer, promote its early diagnosis, and provide support for those patients undergoing cancer treatment. For more local resources and more information visit: losalamoscounciloncancer.org Holy Cross Hospital Cancer Support Services, supported by For the Health of It!, provides non-medical supports to people in Taos & Colfax Counties who are struggling with cancer. These services include: Health care navigation, support groups, housecleaning, massage and other modalities, dog walking, fitness or lifestyle coaching, and assistance with transportation or lodging. For information on the services and to apply, visit: taoshealth.com/taoscancersupportservices or call 575-751-8927 C.A.R.E. – 71

Cancer Services of New Mexico’s

2018 FAMILY CANCER RETREAT A free educational program for New Mexico’s adult cancer patients/ survivors, their family members and loved ones who care for them

SPRING: April 20-22, 2018 Marriott Pyramid North Hotel, Albuquerque, NM

The Program During the weekend, we will intersperse lectures and discussions on a variety of cancer-related topics with fun activities that provide a break from the day-to-day challenges of living with cancer. Planned educational sessions include: • Patient and Family Communication • Cancer 101 • New Developments in Cancer Treatment • “Ask the Oncologist” Panels • Coping with Treatment-Related Side Eﬀects • Genetic Testing: What Does it Tell You • Talking with Kids About Cancer • Caring for the Caregiver • Practical Tips for Staying Out of the Hospital • Healing Bridges – Integrative Medicine, Oncology and Acupuncture • Myth Busters: Cancer Pain, Palliative Medicine and Hospice • Cancer-Related Legal and Insurance Issues • Lymphedema Overview • Medicinal Cannabis - Q& A • Screening and Detection for Survivors • Moving from Surviving to Thriving • Meditation, Yoga, T’ai Chi Chih, & Creativity workshops

“I highly recommend attending the Family Cancer Retreats. Everyone around you has been through what you are going through. I felt ‘normal’ all weekend.” – D. VIGIL, PARTICIPANT

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Logistics: Facilities can accommodate up to four people per family, sharing a hotel room with a private bathroom. Participants must be New Mexico residents, and may include: • One adult cancer patient/survivor; • One adult family member or loved one who has served as their primary caregiver • Two additional family members or friends. If these arrangements will not meet your family’s requirements, please contact Cancer Services of New Mexico.

The entire program, including meals, lodging, and all About Cancer Services of New educational activities is provided atMexico NO COST to participantsCancer Services o (as of 1/12/18) Thanks to Our Supporters!

New Mexico’s

The retreat provides informal sessions, where you can interact with those who are coping with similar issues. *Supervised child care and recreational activities will be provided forSPRING 2018

The Family Cancer Retreat is made possible with the help of many generous corporate and foundation supporters:

Diamond Level:

Lineberry Foundation Platinum Level: A grant from the Albuquerque Community Foundation, HB Construction Endowment Fund

Gold Level:

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FAMILY CANCE RETREAT

TO APPLY: Visit www.CancerServicesNM.org

encouraged to apply as early as possible.

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f New Mexiate that the to the best and his/her g my ability r Retreat to and employd organizag this appli-

that provides services to reduce cancer suffering for New Mexico’s families. We work closely with other cancer services providers to ensure coordination and avoid duplication of effort. We are the only statewide non-profit organization that looks broadly at addressing gaps in cancer-related services while maintaining a 100% focus on New Mexico.

Space is limited so all interested families are

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Cancer Services of New Mexico is an

children and teens during the educational sessions. independent non-profit organization

Silver Level:

Contributing Level: Hancock Family Foundation

Miller Family Foundation

In-Kind:

For more information, please contact Mike Capeless at (505) 239-4239 or info@CancerServicesNM.org A free educational progra for New Mexico’s www.CancerServicesNM.org. adult cancer patients/surviv For more information about our Family Cancer Retreats, or about our other programs, please contact us!

their family members an loved ones who care for th

Cancer Services of New Mexico is an April 20-22, 2018 Marriott Pyramid North H Cancer Services of New Mexico organization that independent non-proﬁt P.O. Box 51344 Albuquerque, NM Albuquerque, NM 87181-1344 provides services to reduce cancer suﬀering Phone: (505) 239-4239 Email: info@CancerServicesNM.org for New Mexico’s families. Website: www.CancerServicesNM.org

APPLICATION PACKET

SELF-CARE: Comfort and Confidence

Comfort & Confidence

Cancer treatments and their side effects may cause physical changes. Know that there are many ways to both look and feel better while addressing an altered physical appearance. Try not to let people talk you into something you don’t feel comfortable with. You don’t have to prove anything to anyone. You are the one who will have to live most intimately with any changes, so you are the one who gets to decide what feels right and best for you. If appearance is a concern of yours then put attention towards it. Do whatever it is that will help to make YOU feel most comfortable and confident.

Hygiene

Weight While some people lose weight during some treatments, such as steroids, may cause bloating. In both cases, opt for loose and unstructured clothes instead of tailored designs that might make you feel uncomfortable. If your face becomes puffy, try V-necks that elongate rounder faces. Crewnecks and other round necklines will give the illusion of fullness if you’re looking thinner from rapid weight loss.

Nails Your nails may discolor, as well as become very brittle and dry due to treatment. Use rubber gloves when washing dishes and cleaning, and keep your hands away from harsh or drying chemicals such like bleach. Men: Keep nails short. Women: Let nails grow and lightly file them with an emery board no more than once a week. P Avoid manicures and pedicures. P Use nail polish remover that is acetone-free. Replace your mascara tube upon starting treatment with a new one. Twist prior to use instead of pumping, to avoid introducing bacteria into the air of the tube.

C.A.R.E. – 74

Treatments and cancer take the energy out of a person. It is important that some of the basic hygiene areas are taken care of (washing hands regularly, brushing teeth, washing face, wearing clean clothes, etc). If any hygiene-related activity is difficult to do alone, ask for assistance from a family member or close friend. Showering is an imporant part of staying and feeling fresh. Even if the fatigue is high, a quick shower can help your body feel refreshed. These little things can contribute to your feeling more confident and comfortable.

Skin Both chemo and radiation increase your skin’s sensitivity to sunlight. If you’re undergoing chemo, your whole body will become sun-sensitive, especially those areas that rarely see UV rays, like your scalp. Avoid exposure, particularly between 10 a.m. and 4 p.m., Protect your skin as follows: P Wear clothes that cover you, such as longsleeves and pants/longer skirts. P Invest in several broad-brimmed hats. P Use button-ups, scarves shawls to cover your chest, throat and neck. P Always be aware when you’re in the sun – (i.e. while driving, your left arm can be exposed to UV rays). P Talk to your medical team if rashes form. They may be able to provide you with hypoallergenic lotion kits. P Visit lymphedivas.com to buy fashionable compression gloves and sleeves FOR MEN: Get Nivea or Dove Care products, fresh undershirts, socks and pajamas.

Tender Loving Care Coupon

DENTAL CARE Dental health is also important during chemotherapy. Taking care of your teeth/mouth will help make you feel fresh while undergoing treatment. It is recommended that some patients get dental checkups before they start certain types of bone strengthening medicine. While patients are undergoing chemotherapy, if they are having dental issues and see their dentist. Let your medical team know if there dentist needs to do any type of invasive work.

NC A L G A AT

Hair loss The most recognizable side effect of cancer treatment is “alopecia,” which is temporary hair loss or the change of color to a white or gray color. NOT everyone loses their hair. Like all side effects, this is dependent upon the type of treatment one is getting.

Why does this happen?

Chemotherapy attacks quickly duplicating [cancerous] cells. Healthy cells that control hair growth sometimes Have sunglasses to help get caught in the crossfire. The response protect your eyes from is hair loss or discoloration. This can be a the lack of eyelashes and very traumatic for women and men who Kleenex to help remedy experience this side effect. Not everyone a runny nose due to a reacts to this side effect in the same manner. Approach it in the way lack of nose hairs. you feel most comfortable. Additionally, know that there are options and programs designed to help you get through this byproduct of your cancer. HEADWEAR Wigs, beanies, hats or scarves are all practical solutions for head coverage. Confronting this reaction to treatment can be especially emotional. It’s a good idea to enlist the support and company of a friend when you go shopping, get a haircut or take any action in

THE PATIENT RESOURCE CENTER

Provides free wigs, bras and breast prosthetics to cancer patients. Open 10 a.m.-2 p.m. CHRISTUS St. Vincent Regional Cancer Center, 2nd floor 490 W. Zia Road., Santa Fe | 505-913-3095 Provided by:

“Specializing in You”

Hairtage salon offers any woman affected by cancer can: • Buy a wig for 10% off • If they bring in the wig, then YOU give them a wig stand, and liner and first free cut?? • Then every existing wig gets 10% off cut shampoo and conditioner and all services 649 Harkle Rd # A, Santa Fe, NM 87505 | 505-820-0102 C.A.R.E. – 75

If a wig is synthetic, do not use any type of heating products on them (i.e. straightner or curling iron) and always wash in cold water and let itair dry.

Look Good Feel Better® Program | Santa Fe This free program designed to help female cancer patients deal with appearance-related side effects of cancer and treatments. In a supportive, safe and companionable group sessions, attendees learn about skincare, make-up, wigs and head coverings. These classes are given by trained volunteer beauty professionals who give their time and their skills to help women through their cancer journey. The 2nd Tuesday of every month CHRISTUS St. Vincent Holistic Health and Wellness Center 490 B West Zia Rd, Santa Fe, NM 10:30 a.m. - 12:00 p.m. There are programs in Los Alamos and Albuquerque, and around the state. To find a program in your area, visit lookgoodfeelbetter.org/programs The Look Good Feel Better Program® is a collaboration between the American Cancer Society, the Personal Care Products Council Foundation, and the Professional Beauty Association. To RSVP call 1-800-227-2345 Everyone who attends Look Good Feel Better goes home with a free kit of beauty products.

LOOK GOOD FEEL BETTER FACILITATORS SANTA FE LORETTA & DOLORES

A Dose of Info from The Pros

We recommend that all undergoing treatment attend support classes, groups or programs. It’s important to see other people in the same capacity and can share stories. The Look Good Feel Better Program is great because it brings women together that are all on a similar journey. Sure they may have differing diagnoses and treatments, but they all are living through the same word, “cancer.” It allows you to be in a room with others who will understand and support you. Sharing the experience together, is something that we’ve seen build confidence in the participants! The program helps attendees to see that they may still feel good and find ways to dress and present themselves in ways that they feel more confident. The program aims to squash the feelings of loneliness and any insecurities that women may have on this journey.

C.A.R.E. – 76

In My Shoes...

Valerie

ON PHYSICAL CHANGES Your body goes through so many changes during cancer treatment and your appearance is not always what you want it to be. My husband has been with me through every step and I didn’t try to hide anything. I never thought I would post a bald picture of myself on Facebook, so if I can do that I can do anything. Maybe losing our hair should be a sign of strength! ON RECONSTRUCTIVE SURGERY What is the right decision for one may not be the right decision for someone else - and that’s ok! We are beautiful with breasts and without breasts! Reconstruction does not have to be done immediately. I delayed my reconstruction because I just wasn’t ready for more surgery. After a year and a half, I was ready! The reconstructive process involves serious surgical procedures, often with extended recovery periods. For me, the process was worth it and I have a little swagger back in my step.! To read more online about Valerie, visit careguide.info

Sites and resources • chemobeanies.com • hellocourage.com • topsyturban.com • headcovers.com THE ART OF THE SCARF A FREE workshop for all cancer patients, caregivers and survivors. 2nd Thursday of the month, 1–2:30 p.m. UNM Comprehensive Cancer Center, Room 1604 Reserve space with American Cancer Society’s Patient Navigator,Eileen at 505-925-114 TLC is a not-for-profit website and catalog of the American Cancer Society whose mission is to help women cope during and after cancer treatment by providing wigs and other hair loss products (plus how-to information), as well as mastectomy products, all at affordable prices. View the NEW for Fall/Winter 2018 Collection at tlcdirect.org American Cancer Society Gift Closet | New Mexico Cancer Center in Albuquerque Open Wednesday afternoons from 2 p.m. to 5 p.m.

HAIR DONATIONS

Oftentimes, friends or family members may offer to donat some of their hair for a wig to get made for a loved one. Beautiful Lengths is a partnership between Pantene® and the American Cancer Society that turns donated hair into free, real-hair wigs for women with cancer. So far, Pantene has donated 24,000 free real-hair wigs to the American Cancer Society’s wig banks, which distributes wigs to cancer patients across the country.

E C N LA

A AT

Learn more at: pantene.com/en-us/brandexperience/make-the-cut

Regardless of which program you choose to use for hair donations, do your research to ensure you are satisfied with each organization’s terms and pay attention to their wig criteria.This is a beautiful gesture for those interested in directly being involved in their loved one’s cancer experience. C.A.R.E. – 77

Prosthetic devices & artificial limbs

Reconstructive surgery Besides the side effects from treatment, the body may have significant changes in appearance due to some kind of surgery. This is a realistic option for many people who undergo surgery to treat cancer. Talk with your healthcare providers to understand your options and find out what types of reconstructive surgery are covered by your insurance.

Artificial limbs, called prosthetics, can replace many different body parts lost through surgery, and most insurance companies will pay for them. Talk with your surgeon and medical care team about options and new developments in prosthetics

In My Shoes... Scott & Courtney About Scott’s surgeries

In December, 2107 Scott had his third brain surgery where about 80% of the tumor was removed. One obstacle that we had ahead of us was the healing of the wound. The wound from the July surgery never successful healed because of the radiation from the first surgery (the skin changes.) A plastic surgeon was brought in to help close the wound and do a skin graph to help the healing. It is now imperative for Scott to start treatment to slow the growth but we cannot start any treatment until he is healed. In the last two months, Scott has had another small surgery to remove an infection because of the wound remaining open for so long. The infection is now gone. He spends two hours a day in a hyperbaric oxygen chamber to help heal the wound, he is eleven treatments in and we are seeing results! – Courtney, Scott’s wife.

About his wife

The diagnosis, brought my wife, Courtney, much closer to me. She has made this battle and journey so much easier. She has always been by my side through thick and thin, no matter the outcome. She has been my rock, just as I would be her rock. My wife has been here with me through it all, and I know she will continue to be, as I win this battle. The power of now is what we all have. – Scott To read more about Scott & Courtney’s story see pages 97-100 and visit careguide.info

VOICES FROM EXPERIENCE – Take control of the situation. Cut your hair before the cancer takes it! It’s a great feeling to lose it on “your terms.” – Buy a wig before treatment begins so that it can best match your hair color and style. – Maybe losing our hair should be a sign of strength! It takes courage to go through this treatment and we should be proud of surviving the daily battle.

– The day chemo “got real” for me was the day I was taking a shower and clumps of hair began falling out into my hands. Losing my eyebrows and eyelashes was a shocker and made me feel very self-conscious. – My aunt helped others to feel the best they could and embraced life and cancer in this way. – Each day get dressed for YOURSELF. If you want to wear lipstick, wear lipstick. If you don’t want to wear a hat, don’t wear a hat. No matter what, hold your head up high and get on with your day in confidence.

C.A.R.E. – 78

“The new normal,” for those living with cancer oftentimes includes a new shopping list and ways to get everything you need may alter a bit; from medical supplies to groceries and food. Avoid multiple unnecessary trips to the grocery store by keeping a running list in a prominent place, in the house. Add items as you run out of them so you won’t forget things.

Helpful items to buy Medicine Cabinet

Kitchen

Comfort

• Thermometer – to check for fevers • Latex gloves • Neosporin • Sanitizing antibacterial wipes • Band-Aids • Unscented moisturizing lotion • Airborne/Emergen-C – for caregivers to stay healthy • Hand Sanitizer – for caregivers/guests • Sunscreen and/or a hat • Vaseline • Kleenex • Tissues and paper towels • Soft toothbrush

• Sandwich bags — great for packing snacks • Plastic water bottle(s) — find a couple that the person likes, and can easily fill up. • Blender — for shakes and smoothies • Trashbags & bucket — for bedside nausea

• Extra blankets/robe/pillow • Compression socks • Heating pad/throw for sofa • A lap tray – for eating, reading, computer work • Winter gloves – will help keep chilled hands warm • Travel neck pillow – have comfortable car rides/ naps/flights • A framed picture of them with their loved ones – at bedside Always confirm that your health insurance is compatible with your preferred pharmacy, to avoid increased costs.

A % of your Santa Fe Smith’s purchase can go to the Cancer Foundation for NM through their community partnership.

SANTA FE PHARMACIES Albertsons CHRISTUS St. Vincent CVS Del Norte Pharmacy Lovelace Medical Center Nambe Drugs Pharmaca Sav-On Drug Smith’s Target Walgreens WalMart

Visit goodrx.com to find the lowest prices on all FDAapproved drugs.

NC A L G A AT

LOCAL MEDICAL SUPPLY STORES Preferred Medical A & R Medical Supply

C.A.R.E. – 79

SELF CARE: Your Shopping with Ease

Shopping with Ease

Simpler grocery shopping KAUNE’S NEIGHBORHOOD MARKET Delivery Get your groceries delivered to your home Mondays, Wednesdays and Fridays $10 fee + tax Pickup Kaune’s will gather and have your groceries waiting for pickup $5 prep fee, + tax. PLACE YOUR ORDER Call in your order for pickup 505.982.2629

TARGET Pickup Create a free account on Target’s website and select *items you’d like prepared for you. Target will gather and have your seleced items waiting for pickup at Guest Services within hours and will be held at the store for two days. *limitations may apply to which items may be prepared. Visit target.com to make your pick up order.

NEW!

INSTACART

NEW!

Grocery delivery service in Santa Fe and surrounding areas. Participating stores: Visit instacart.com Login through your facebook account, gmail account, or simply create one for free Pick your store Click on items you want Pick a time of delivery Pay online What to know: $10 minimum on all orders For more information visit instacart.com C.A.R.E. – 80

Across New Mexico, people are working to help one other and strengthen their communities. Century Bank is proud to support their humanitarian efforts. It’s what good neighbors do. Stop by, call or visit us online today. MyCenturyBank.com 505.995.1200

C.A.R.E. – 81

Santa Fe Albuquerque Rio Rancho Española Las Cruces

care-ad-hhw-fp.qxp_Layout 1 2/9/18 3:35 PM Page 1

INTEGRATING MIND, BODY & SPIRIT TO HEAL THE WHOLE YOU The CHRISTUS St. Vincent Holistic Health and Wellness program brings together different healing methods to promote wellness of mind, body and spirit. Palliative Care addresses the special needs of patients at any stage of a serious illness, while Integrative Medicine combines Eastern approaches, such as acupuncture and mindfulness training, with conventional Western Medicine for healing of the whole person. Our team is made up of palliative care and integrative care specialists, social workers and chaplains, and we invite active participation from patients and family.

HOLISTIC HEALTH & WELLNESS 490 B. WEST ZIA ROAD, SUITE 4 • SANTA FE, NM 87505 505.913.3820 WWW.STVIN.ORG C.A.R.E. – 82

Throughout cancer, people may feel like their lives are consumed Before starting a new routine, exercise with going to appointments, taking the medicine that has been program or using prescribed and undergoing treatments. This all is crucial in feeling complementary better. However, medication and treatment are not the ONLY ways medicine ALWAYS to help your body feel good! The concept of “holistic wellness” consult your refers to an approach to health and healing that looks at the entire oncologist. person, not just the diagnosis. Health refers to physical, mental, emotional and spiritual health. It is a team approach utilizing the expertise of doctors, nurses, acupuncturists, yoga teachers, physical therapists, health coaches, etc. AND the patient. There are many local programs that can help you through the physical, mental and emotional stresses of the standard medical treatments throughout your cancer journey.

Complementary medicine Complementary medicine is used alongside standard medical care. COMPLEMENTARY THERAPIES GENERALLY INCLUDE: Yoga Tai Chi Qigong Meditation, Massage Acupuncture Chinese Herbs Spiritual Care & Healing Guided Imagery Antioxidants

Aromatherapy Art Therapy Chiropractic Cognitive-Behavioral Therapy Dietary Supplements Exercise Herbs and Extracts Hypnosis

Intercessory Prayer Meditation Multivitamins Music Therapy Pet Therapy Relaxation Therapy Therapeutic Massage Spiritual Healing Tea

People use complementary therapies for a variety of reasons, including: • To help cope with side effects of treatment • To ease worries and stress of cancer • To try to treat or cure their cancer

ERIC BUCKLEY, DOM A CLOSER LOOK AT ORIENTAL MEDICINE ON ORIENTAL MEDICINE:

A Dose of Info from The Pros

The benefits of Oriental Medicine include drug-free assistance with a host of medical issues, including but not limited to pain management, neuropathy, fatigue, nausea, loss of appetite, bowel imbalances such as constipation or diarrhea and psychospiritual support for concerns that may arise that lead to anxiety or depression. We also utilize herbal medical formulations that have been tried and true over thousands of years in order to manage a wide range of symptoms that are difficult to treat. We take into consideration the patient’s medications and primary treatment plan in order to not conflict with the goals of their oncologists and other primary care physicians. For specific therapy questions contact Eric Buckley | ebuckley@st.vin.org | 505-913-3821 For all programs and services, contact Alysha D’Amour at 505-913-3820 C.A.R.E. – 83

SELF CARE: Therapy: Body, Mind and Soul

Therapy: Body, Mind and Soul

THE ST. VINCENT HOSPITAL FOUNDATION PROVIDES ACUPUNCTURE AND HERBAL TREATMENT FOR QUALIFYING PATIENTS • ACUPUNCTURE THERAPY & HERBAL THERAPY* Doctors of Oriental Medicine certified in oncology • MASSAGE THERAPY* Therapists certified in oncology Acupuncture can help alleviate neuropathy.

*Many insurances companies have a copay for such services. For activities that your insurance doesn’t cover, there are free or reduced costs for services including acupuncture, massage, and herbal medicine at the CHRISTUS St. Vincent Holistic Health & Wellness Center for qualifying patients. For information on how to apply contact CHRISTUS St. Vincent Care Coordination at 505-913-4256.

KIMBERLEY ONCOLOGY MASSAGE THERAPIST

A Dose of Info

ON MASSAGE THERAPY: Massage therapy is beneficial for everyone and helps with skin hydration, stress and anxiety reduction. It also is useful to have and extra set of eyes monitoring skin condition during and after treatment. NOTE: We cannot stress enough that this is a very gentle massage using lotion and oil. Deep pressure is NOT advised as chemotherapy is challenging enough for those receiving Chemotherapy or Radiation. Aggressive pressure can cause an inflammatory response in the tissues and make it more difficult for the organs of detoxification (lymphatic and gastrointestinal systems as well as kidneys, lungs, liver). Being able to support people as they navigate sort and long-term effects of treatment (stress, anxiety, nausea, pain...) is a gift. It is the most rewarding feeling to help someone laugh a little and feel better.

from The Pros

TRY THIS AT HOME: –Make the alphabet with your feet elevated to keep fluids moving to help reduce swelling. Holding Courage Retreats (for women with recent cancer) four-day haven in a nurturing environment where love and care greet women facing the ultimate challenge. Activities include: Yoga and movement | Meditation Writing | Breathwork Massage | Musical activities Rest time | Walking the labyrinth For more information & retreat dates contact: HolidayCourageRetreats@gmail.com or call Deena at 505-927-6903. C.A.R.E. –84

The CHRISTUS St. Vincent Holistic Health & Wellness Center offers movement classes year-round. MONDAYS YOGA FOR CANCER PATIENTS Every Monday, 2- 3 p.m. Helps facilitate increased strength, flexibility, self awareness, emotional balance and mental clarity. Practice a variety of poses, breathing and relaxation techniques. TAI CHI FOR HEALTH & RELAXATION Every Monday, 5:306:30 p.m. Tai Chi Chun is a slow moving, meditative ancient art that improves health, wellness and balance and will enhance body awareness to give rise to relaxation and renewed energy for everyday life. THURSDAYS QIGONG FOR HEALING Every Thursday, 9:30-10:45 a.m. The slow, meditative movements of this ancient healing art serve to improve health, vitality and balance. CHAIR YOGA Every Thursday, 11:15 a.m. - 12:15 p.m. A gentle form of yoga in a safe and supported way that focuses on posture as well as therapeutice movements for those dealing with lymphedema.

Both qigong and tai chi are extremely gentle on the body and can even be done from a seated position.

YOGA FOR CANCER PATIENTS Every Thursday, 5:30-6:30 p.m. Helps facilitate increased strength, flexibility, self awareness, emotional balance and mental clarity. Practice a variety of poses, breathing and relaxation techniques. FRIDAYS YOGA FOR HEALTHY AGING Every Friday, 9:30-10:30 a.m. Focuses on developing greater balance relieving tightness in muscles and joints. For information on all classes call 505-913-3820 or email Alysha.DAmour@stvin.org All classes take place at: 490-B W. Zia Road, Suite 4 Santa Fe, NM (by the CHRISTUS St. Vincent Regional Cancer Center)

In My Shoes...

Cynthia Yoga Instructor

When I went through chemotherapy, I walked almost every day for 20 minutes and did a passive restorative yoga practice every afternoon â&#x20AC;&#x201C; even when I did not feel like it! So I can relate to those feelings. The class I teach is for those going through treatment and recovery. ANYONE can do these classes. It is not about being flexible. I gently teach and guide them how to set up, be in the pose and how to come out of each pose. We adapt each pose for individual needs. There are poses to practice if you are nauseos, fatigued or depressed. Students leave feeling more relaxed, less stressed, and refreshed with a more positive state of mind. I love teaching this class because I can help others feel better during this challenging time, using the yoga tools that helped me. It is very gratifying to see the positive change in students by the end of class. Their faces soften. They can smile and share experiences and resources with each other. There are students who continue coming to class years after they finish treatment. To read more online about Cynthia and yoga, visit careguide.info C.A.R.E. â&#x20AC;&#x201C; 85

Hypnosis Studies in medical literature support that hypnotherapy (aka hypnosis) benefits people living with cancer. Symptoms related to cancer and its treatments have been effectively controlled with hypnosis; less pain, less nausea, less fatigue, and less emotional upset. Hypnosis offers a nonpharmaceutical means of pain control, accelerates the natural healing process that strives to create less anxiousness and worry through relaxation techniques, and increases reports of improved quality of life. Hypnosis is also a great tool for caregivers who often deal with symptoms related to the caregiver role; such as stress, fatigue, sleeplessness, and changes in appetite and other normal activities.

AMY FREDERICKS CMS-CHT, FIBA HYPNOTHERAPIST

A Dose of Info from The Pros

In my previous position as Director of Palliative Care and Integrative Medicine for a community health care system, I began to use hypnosis with patients, at the clinic I founded, as a way to expedite their goal achievement. I witnessed people’s transformation, not just coping. It became clear that I was to pursue this service path, so I started my own hypnotherapy practice, “Hypnosis for a Change.” Hypnosis is scientifically proven to be a powerful, safe and effective therapeutic technique for improving the quality of our thoughts, emotions and behaviors. Everyone’s trance experience is unique to them and may differ from session to session. You do not lose consciousness in hypnosis, it is not the same as sleep and you can remain aware of everything in your environment, if you choose. In hypnosis, what we pay attention to is what controls our experience. So if we focus on relaxing our mind, often thoughts slow down; relaxing our body, oftentimes releases tension. Most people report a sense of calm and feeling of relaxation. *Go to carehypnosis.org to have a hypnosis experience * For specific questions contact Amy Fredericks | amy.fredericks@hypnosisforachange.net | 505-946-7588 & read more at careguide.info

Healing and Mindfulness Healing occurs on many different levels. It is not your fault that you have cancer, so keep loving and trying to fulfill yourself. Many researchers believe that doing something creative, pursuing a dream or passion, can be a key to healing, physically and psychospiritually. Mindfulness is a means of paying attention on purpuse, in the moment, and without judgment of anything. Creative ways to exercise mindfulness: Coloring books, journaling and writing poems, or quilting are all therapeutic pasttimes to either revisit or hobbies to pick up. Cancer automatically puts people in an unfamiliar area of their life. It might be hard to initially step outside of the box and do something new. That is natural, but you may be surprised how doing so may positively affect you. Know that it might take some courage, but if your doctor has no reservations, allow yourself to try a new activity or pick up a new hobby. The most important thing to remember is to be kind to yourself. For a free coloring book contact care@sfnewmexican.com or 505-690-6308 C.A.R.E. –86

WE CARE

WOMENWWINGS.ORG

The Women with Wings Foundation proudly supports C.A.R.E. by bringing the healing arts to cancer patients, their families and healthcare providers. For more information on our CREATE TO HEAL BOOK and MINDFULNESS APP, our ART CARDS and PROGRAMS, please visit womenwwings.org. Patricia Varga, Founder and CEO The Women with Wings Foundation

pv@womenwwings.org / 626.403.7575 t he

women wit h wings f o u n d at i o n

BOOK, APP AND ART CARDS AVAILABLE @ WOMENWWINGS.ORG C.A.R.E. â&#x20AC;&#x201C;87

A simple meditation for you to try Find a quiet place wher you can be undisturbed for 20 minutes, sitting or laying down).

Start paying attention to your breath. When your mind wanders (as it will, it’s normal for the mind to be busy), gently bring it back to the breath. You can count the breaths if you wish.

Begin to relax your muscles and close your eyes

Focus completely on releasing all of the tension in your body, one area at a time.

*Start with just a short practice time, even five minutes of meditation has been shown to really support healing and a sense of wellbeing. *

Spiritual care Spirituality and religion can provide great comfort when people learn they have cancer. Oftentimes people turn to their faith (whatever that may be) to guide them through the illness. In some cases, people may feel that God/their god is punishing them somehow with the sickness or that they’ve been abandoned if they don’t get well. But most of us have some kind of belief system that can bring us solace. To emotionally and mentally sort through these issues, have a conversation with a trusted clergy member, priest, rabbi, chaplain, or palliative care physician or spiritual care specialist. The CHRISTUS St. Vincent Holistic Health & Wellness Center can provide a spiritual counselor or chaplain to help patients maintain a healthy emotional and spiritual outlook throughout their treatment. To make an appointment with the Spiritual Care Team ,call 505-913-5731.

C.A.R.E. – 88

PALLIATE

/’palē āt/ verb 1: make (a disease or its symptoms) less se vere or unpleasant with out removing the caus e 2: allay or moderat e (fears or suspicions) 3: disguise the se riousness or gravity of

PALLIATIVE

/pāl’ē-ā’tiv, -ē-e-tiv/ adj. 1: (of a medicine or medical care) relieving pain without dealing with the cause of the condition. noun 1: a palliative remedy, medicine, etc. -merriam-webster.com

Any person, of any age, with any type of Palliative care is a growing field of specialized medical care that improves the quality of life of patients and their families by focusing cancer, at ANY stage, may receive palliative on relief from pain, stress and other often debilitating symptoms care. of treatment for a serious illnesses. Illnesses treated by palliative care include cancer, heart disease, lung disease, renal disease and neurodegenerative disorders. It aims to eliminate physical and emotional discomfort so you can live with cancer as best as you possibly can. It provides a person with or without a caregiver, with a chronic illness that extra layer of assistance. Palliative care is appropriate at any age and any stage of a serious illness and can be provided along with curative treatment. It is delivered by trained specialists who work together with doctors and nurses in a team-based approach that focuses on the person’s needs, explains treatment options and gives people and their families a voice in determining their treatment and care. Although it does not cure the disease, palliative care provides a core source of support in improving the quality of life from the point of diagnosis through ay progression of the disease. Social/Mental/ Emotional/ Spiritual Support

Symptom & Side Effects Management

Community Resources Ways to Improve Health and Well-Being

Problem Solving

ASPECTS OF CARE C.A.R.E. – 89

Pain Management

SELF-CARE: The Palliative Path

The Palliative Path

Extra “coverage”

Disease Progression

Advanced Care Planning

End of Life – Hospice

Areas relating to “planning through the pain” (see pages 144-148) are also covered under the level of support that palliative care provides.

DOUGLAS EGLI, MD, FACP PALLIATIVE CARE PHYSICIAN CHRISTUS ST.VINCENT HOLISTIC HEALTH AND WELLNESS CENTER

Q. What can one expect from a palliative care appointment?

A. There will be a comprehensive and extensive discussion focused on issues that are troubling to the patient and family. This could include symptoms, planning for the future, services or support at home.

A Dose of Info from The Pros

Q. How does palliative care help with the management of symptoms and side effects?

A. The palliative care team uses a multidisciplinary approach to patient/family issues with each discipline looking at the issues from their particular area of expertise. These are combined into a care plan. The palliative care team typically spends more time devoted to quality of life issues.

Q.What is a common myth about palliative care?

A. Palliative care is NOT end-of-life care. It is care focused on improving the quality of life for those people with serious illness.

Q. When should and how long can one see a palliative care doctor?

A. Anyone with a life-limiting serious illness can see a palliative care doctor at anytime about any issue that is affecting their quality of life. There are no limits on visits.

Q. Any recommendations for patients/families struggling with the reality of a terminal illness? A. We encourage patients to be open with families about their wishes, as they face their last days. Try not to be afraid to share what is in your heart. Try and find some “joy’ each day. And overall –just take things one day at a time. The Holistic Health & Wellness Team partners with your physician to promote your well-being whether in the hospital or outpatient clinic. Inpatient Palliative Care: 505-913-5625

2018

Outpatient Palliative Care: 505-913-3820

FORUM FOR GROWTH This forum shares useful research tools and methods for achieving physical, emotional, and spiritual health with people facing cancer. The intent is to help patients maximize the effectiveness of their chosen treatments through enlightened self-care. 1st & 3rd Mondays of every month Holistic Health & Wellness Center Contact Kristin St. Clair, RN for more information, kristin.stclair@stvin.org C.A.R.E. – 90

A caregiver can be a spouse, child, relative, good friend or hired Caregiving is a help. Regardless of who a caregiver may be, caring for someone with cyclical journey. cancer means big changes in their lives. Know that every situation Old emotions and and person is different. There is not a “one size fits all” approach to issues may return this role. Caregiving isn’t just about picking up medicine, driving to unexpectedly. appointments, or reacting to treatment-related side effects. Instead, it truly is about doing everything you can to help the person living with cancer have a better quality of life. Physically, emotionally or mentally, you are “on-call” to meet those needs, and this is undoubtedly an extremely challenging role to have. There may not be ways to dominate this role, but there may be ways for it to seem more managemle at times.

The test of “P.E.P.” PATIENCE It can be easy to want to make progress in the diagnosis of your loved one, get comfortable with the “new normal” already, or not have the energy to take the time to help others relate to your situation. Try to take deep breaths and be patient with your loved one as they navigate this with you. Try to show grace to whoever might not understand your role and most of all, be patient with yourself. You are not expected to know all the answers or feel comfrotable in your role. It’s ok to be unsure.

ENDURANCE Your physical, mental and emotional energy may become tired easier than before. You want to be in this for the long haul; stay the course and do what you can to find energy sources to keep yourself fueled. PERSPECTIVE Keeping a positive attitude way seem impossible. Just strive to keep a healthy and productive view of the situtation – taking it hour at a time. This will help you remain focused on the tasks you have and hopefully enable your mind to be clear of unhelpful and unnecesarily damaging thoughts.

“Side effects” of a caregivingrole Your loved one isn’t the only one in the dynamic who experiences “side effects” from cancer. Your role, too, can bring unwanted responses. It’s ok to acknowledge the impact on you as well. The more a caregiver can identify their own “side effects” and work on them, the more strength they can have in tackling those of their loved ones and their disease. • Your priorities have changed drastically. • You are less carefree. • You go on more emotional rollercoaster rides than before. • You have a hard time sleeping. • You become more irritable or sensitive. • You face financial issues from not being able to maintain a full-time job or paying for more expenses. • You become closer to family and friends. • You are more tired and get sick more often (“caregiver fatigue”). • You may learn to value life and the people in yours more. • You may seem more “reserved” or “removed” from those who know you. • You might have an increased level of insecurity in areas such as how you handle your stress, how you are juggling your life, your performance at work, managing your relationships, and mostly in the way you are caring for your loved one. C.A.R.E. – 91

RELATIONSHIPS & SUPPORT: Caring for the Caregiver

Caring for the Caregiver

A CAREGIVER’S CAREER

Even if it is just the basics of getting your loved one to appointments, there is also the mental toll that caregiving can put on someone. Acknowledge the need for personal/professional life separation and do the best you can to not worry about the one when you are at the other.

C N A GL A AT

• Be transparent to your direct supervisor about your priorities and potential schedule conflicts, if you feel comfortable. • Look into FMLA leave options with your human resources department. •

Always assess the level of compatibility your job has with your caregiving role to determine See page136-140 For information on cancer and a career. Much can also be applied to caregivers. RHONA S. LEVINE MARRIAGE AND FAMILY THERAPIST

A Dose of Info

“TOGETHER” SUPPORT GROUP FACILITATOR RECOMMENDATIONS FOR CAREGIVING Know that there is no such thing as a perfect caregiver. Emotions such as anger, fear and feeling overwhelmed by added burdens oftentimes may interfere with caregiving duties. Caregivers need support from family, friends, a mental health professional and even a support group to help them in this role.. The caregiver ideally should build a team of people who can help in small or large ways. Choose the right people for the right job. Engage in self-care by doing some of the activities that were fulfilling before cancer. Rememer that a cancer diagnosis can be a marathon not a sprint. – it is the “new normal.”

from The Pros

MANAGING THE CAREGIVER ROLE 1. Develop coping skills and a model appropriate to the situation. 2. Remember to use your newly acquired skills. 3. Accept that the spectrum of emotions are normal for the situation. To learn more from & about Ronni Levine, Cancer Foundation for NM volunteer, visit careguide.info

Caregiver camaraderie TOGETHER SUPPORT GROUP: A GROUP FOR FAMILY & FRIENDS OF CANCER PATIENTS Discuss the unique needs of the caregiver and those in the life of the cancer patient The group is provided by Cancer Foundation for New Mexico and facilitated by Ronni Levine, Licensed Marriage and Family Therapist Every Tuesday, 11- 12:15 p.m. at the Cancer Foundation for New Mexico office: 3005 S. St. Francis Dr., Suite 3B, Santa Fe *FREE* Contact: Caroline Owen, 955-7931 ext. 3, caroline@cffnm.org

CAREGIVER SUPPORT PROGRAM A free program provided by Cancer Services of New Mexico that matches caregivers with volunteers who have been in the same role. info@cancerservicesnm.org | 505-259-9583 Caregiver.com| Caregiving.org sharethecare.org | cancercare.org

Things I Wish I’d Known: Cancer Caregivers Speak Out by Deborah J. Cornwall

C.A.R.E. – 92

“A CAREgiver package” There is nothing that can truly prepare you for your role. There are, however, certain “items” to “pack” for a more manageable experience: KNOWLEDGE Inform yourself on your loved one’s cancer. It can help build confidence in your position. Ask questions and take notes for the patient. UPLIFTING PEOPLE Those with negative, dramatic or seemingly selfish tendencies just have no place in your life anymore. Invest in those who invest in you and save your energy for those that bring you joy, comfort, and most importantly– support in this role.

Respite care is up to fiveday periods of time, either in a hospice facility or in a nursing home or hospital. This allows friends and family some time away from caregiving.

RELAXATION TECHNIQUES Everyone relaxes in different ways, whether it is reading, going for a jog, writing or even binging on your favorite TV show/movies. REWARDS FOR THE LITTLE VICTORIES Were you and your loved one able to do something you enjoyed? Did you make it through a day at work without snapping back at someone? Did you navigate through a difficult discussion or appointment? Recognize these accomplishments and be proud of them!

A CAREGIVER’S “TO DO” LIST: With so many responsibilities, it is difficult to keep everything straight. Try to accomplish these OTHER very important “tasks”: COMMUNICATE honestly, clearly and frequently with the person you are caring for. Sharing your feelings can be rewarding for both of you. RELIEVE STRESS with exercise, writing, yoga, meditation or hanging out with positive people. BE KIND to the person living with cancer, to those around you who might not understand your role and especially to yourself. STAY FLEXIBLE: your loved one’s cancer will knock you off balance if you are committed to one “stance.” Stay on your toes as the situation continues to change. BORROW STRENGTH whether it be literally or figuratively. Lean on others when needed. Strength can come from a personal friend, a support group or a professional counselor. The source is irrelevant. Just seek out something ... ANYTHING that works for you at this time.

You’re only human There is no such thing as a “super-caregiver.” You are already a hero by nature of what you are doing. No need to make it a harder job than it has to be. You are one person, and can only handle so much. Don’t be afraid to accept help from someone. Let’s say that again –DON’T BE AFRAID TO TELL PEOPLE YOU NEED HELP. If people are offering, they are willing. Utilize their willingness to alleviate some of your load. Even if their assistance makes it just an ounce lighter, that’s less you’re carrying. And that’s an opportunity to utilize if deemed necessary or if the opportunity presents itself. C.A.R.E. – 93

“Early detection” It becomes unhealthy to allow bottled-up feelings and frustrations to go “untreated.” Therefore, a form of “early detection” in a caregiver is critical. If you feel unsettled or angry, take an important step and seek out a professional (social worker, counselor, therapist) who will listen and help. Don’t wait until you have emotionally / physically / and mentally shut down – lashing out at yourself or others. If you can’t shake these uneasy feelings or feel like you might possibly be anxious or depressed, utilize resources that are available to you. CHRISTUS St. Vincent Counseling Support: 505-913-5731 Caregivers hear this many times from others. However, it may be hard to know what that even means. In actuality, “taking care of yourself ” means something different to every caregiver. Only you know what it means to make yourself fulfilled and at your best. Sometimes you might have to think about what makes you happy, and how it has changed. Do some reflection. If you are not making time doing something you enjoy (whether with your loved one or alone) put it on your calendar, as if it’s an appointment.

ASK YOURSELF: When do I feel at my best? Who are the positive influences in my life? What did I enjoy before I was a caregiver?

In one way or another you should still be able to do those things, even if it is a revised version.

Caregiver concerns WHAT IF I HAVE A CONFLICT WITH MY LOVED ONE? When people don’t feel good, they might not be aware of how they are approaching you. Their bodies are tired and their filters are worn down. Hurtful or seemingly ungrateful things might be muttered. TRY not to take it personally or feel unappreciated. If your loved one isn’t treating you well, it’s ok to say, “I’m going to leave the room now. Because this doesn’t feel good right now. But I will be back.” Take that frustration and dump it on a trusted friend / pedal it out on a treadmill / slam it across the tennis net / bake it with a batch of cookies / pour it into a work project. A third person may have to be consulted to mediate the dispute. The sooner any disgruntled feelings can be resolved, the better experience you both will have. I’M NOT NEEDED ANYMORE, WHAT DO I DO? Let it be known that this time will actually never exist. Will the WAY you are needed change depending on the health and condition of your loved one? Absolutely. Sometimes you may need to amplify your aid; other times, your assistance isn’t as much of a necessity. Regardless of where you are on this continuum, they will always need you, in some form, for emotional and/or mental stability – to

simply be there for them. WHAT IF I MESS UP? No matter what you do, you’ll likely come to point(s) where you feel you have failed your loved one in some way. Doing your best doesn’t exempt you from feeling that you could have done better. Find a way to forgive yourself and move on. WHAT DO I DO ABOUT MY GUILT? A caregiver’s guilt is real, but it doesn’t have to be common if you learn to reframe what you are doing and accept the very human emotions that come with it. Often times caregivers feel sometimes unsettled if they do something unrelated to the one they are caring for (and possibly enjoy it). Know that you SHOULD (and often loved ones want you to) take a breather every once in a while to refresh. Embrace self-care without guilt. Caregivers also may get angry at themselves if they show frustration with the situation or say something insensitive in front of their loved one. Yes, these things may make you feel terrible. You may feel guilty. Embrace these human emotions and learn to release your tension in other ways so that your tolerance is high around the one you are caring for. But know that cancer may be a situation that angers you – and that’s ok.

C.A.R.E. – 94

Self-care of the caregiver Imagine that within yourself you have five distinct “tanks” with five distinct ways to fill them. Working for balance in these five areas will help you stay healthy and on track. Physical — Exercise, get enough sleep, get a massage and take care of your body. Emotional — Be realistic about feelings and share them with others who are supportive. Mental — Logically and positively approach situations with a calm mind. Spiritual — Maintain a sense of peace by meditating, praying or going to church. Personal — Put some fun in your life — hang out with positive friends, keep up hobbies, play sports or games, watch movies, take a quiet walk or simply do things you enjoy.

No matter the diagnosis or the stage, seek to make fond memories with your loved one. It will prove to heighten the quality of life for BOTH of you during this time.

OTHER TYPES OF CAREGIVERS

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Many people with cancer and their caregivers will admit that the company of ANOTHER type of “family member” helps to bring them joy and comfort on rough days – their pets. Although the responsibilities may alter for their care, a person’s pet can help provide companionship. See how Michael’s dog, Avery, on page 54 has been an asset to his well-being. NOTE: Keep pets clean and healthy, so as not to increase risks of infection for anyone.Those undergoing treatment should steer clear of pet waste. Overall, a calming pet of the fur, a nice walk or even a sweet cuddle with a pet can sometimes be a comforting remedy to someone and their caregiver during this time. C.A.R.E. – 95

VOICES FROM EXPERIENCE – Not having control over some aspects of the cancer, results of scans or reactions from minute to minute is hard to embrace. Accept that fact early on so as not to get too frustrated throughout the process. You can’t “fix” their cancer. The sooner you accept being powerless and that lack of control, the more energy you can use to put towards things that do matter. – LISTEN. Don’t force your loved one to do anything. Being overbearing will help no one involved. – Say, “I need five minutes.” Make time for yourself if you can. – Don’t feel like you shouldn’t accept help. – Focus on what they still can do/qualities they have maintained, not on the parts of them they’ve lost. – Make an appointment to hang out with yourself every week. – Keep your own doctor’s appointments. You cannot help your loved one if you aren’t managing your health properly. – Treat patients with respect. Let them keep their dignity. Don’t talk to them or treat them like they are children. – You just gotta have that inner will and keep your own life in perspective.

– Do things you like to do if you can. – People aren’t mind readers. You have to tell people what you need. – EDUCATE YOURSELF — be involved. You probably don’t have a medical background, so learn about the medicine. – Be ok with sharing your emotions, even with your loved ones. They know you are human. – Stay on top of things and be organized. It’ll make you feel better and somewhat in control in an uncontrollable situation. – Make your loved ones feel like they did before they got sick. – Stay productive and healthy so that you can maximize your support for your loved one. – Sometimes you know what’s coming around that corner, and sometimes you don’t – so it’s easy to feel lost or scared. – Don’t abandon your hobbies. – Remember that they are a human first, everything else second. You are scared too – but make every effort on their behalf. – Celebrate the little victories. – Show emotions. – Take their cue: they’re the one fighting.

t , I do wan r fo for me. Now k o o d ’s it u at yo l ate al now th .” I appreciy needs that well. K e know that you’re w “thank you m . egiver, “Dear Car start off by saying, le to communicateyour emotions too, –or disregard a chore Let me justthat I may not be ab’s really ok to show g up from the store,ut YOU. IT doesn’t to to tell you have good days. It et to pick somethin that day, talk abo r you to take time t you to not’s also ok if you forgu are or what you didok me to. It’s ok fo that you please don’ human. It ple ask you how yo appointments you toainst you. I will askyou, it will hurt me When peo e to be about what ise I won’t hold it ag ething happens to what you have to dou... always havjust for you. I prom body though. If somght now. Please do n people around yo do things with your health or rting. I need you ri of yours and lean o – I try to shake thaty be carelss than I’m already hu s. Use those outlets burden on your life me do things on m pt even more r strongest these daymake me feel like a so it’s OKAY to let please at least attem ce to feel you o, please don’t ever eed some autonomy, e to do something, ence, so your patien for me. Als ady. Know that I n can and have a desirlosing my independ nnot be. I want to u feeling alrehave made it clear I really struggle with ng for me when I ca treat me the way yotry own. If I out and allow it. I need you to be stro on’t mean to. Please days, can we please to hear me ed. I’ll admit, I do ut on you, I truly d bit different these lated to my health, is appreciatif I take my illness oour lives both look ae together, and unre derstand that even u apologize d to. Even though pany? Quality tim . I hope you can unce and appreciate yo always use joy each other’s com I may ever vocalize for granted. I noti to really enis better for me than , I do not take youour Loved One –Y especially is about me right now though it at you do. for ALL th C.A.R.E. – 96

Cancer affects every relationship in one’s life. A spouse or partner might be one of the people most affected by a diagnosis. For them, it means big changes not only for your life but also for life together as a couple. As long as you’re going through it together, you’re growing and making progress.

Communication is key Up to this point in your relationship, no doubt you have approached Being honest with joys and trials together. Let cancer be one of those obstacles that you your partner about your feelings is confront as a team. If anything, it is a time that calls for some of the most important collaboration a couple has ever done. Try to understand always important. in what ways your spouse feels most loved and supported. Ask, if necessary. Then make efforts to be responsive.

The role reversal Due to physical challenges, each person’s responsibilities may be altered. Whether that means who goes shopping for necessities, who prepares dinner, who picks the kids up from school or who manages certain financial or housing issues, ALL may be impacted in one way or another. Have open communication about what needs to be done and who is best to do it. There are tasks that you might want to handle. If you feel up to it, you are encouraged to do so. However, you should never do something that might be detrimental to your health just because you always used to. As hard as it may be, it is recommended to relinquish control over activites, habits and responsibiities that are not conducive to your health. This is where spouses must step in and start to handle the things they didn’t before. So it may be time to equip yourself with the materials and the knowledge to do those things and to teach and empower others in their new duties.

Areas that may be affected

Help your spouse manage things for you by making a list of resources and information on how to do certain tasks. This will help them feel comfortable handling some of those things.

Cooking

Grocery shopping

Financial management

Parenting duties

Driving Household chores

Taking care of the pets Communication with friends / family

Solo activities Getting used to attending some of life’s events without your loved one for a while could be extremely difficult, especially if you’ve been together for many years. It’s ok to recognize this hardship. Know that your loved one wishes they could go with you/do that just as much as you wish they could too. Although it may be uncomfortable, try to remain active in these ways for a sense of normalcy. If you find this to be utterly miserable, reach out to a friend or family member to keep you company as you attempt to confront these activities without your loved one. I used to always do this with my spouse. How am I supposed to do this alone?

C.A.R.E. – 97

RELATIONSHIPS & SUPPORT: Spousal Relations

Spousal Relations

In My Shoes...The Dennedy-Franks

On their wedding day:

AS A COUPLE August 21, 1976 TOGETHER: We go together for all of the tests, results and almost all of the appointments. It’s important. We talk as much as we can to always know how each other are doing. It’s important to listen to what each other has to say. FACING THE DIAGNOSIS & SIDE EFFECTS DIANE: When I initially received the news I thought, “okay this isn’t that bad.” Then things just got progressively worse. DAVID: It doesn’t really seem fair. She’s paid such good attention to her health her entire life and doing everything she could to avoid a recurrence from her previous breast cancer experience. DIANE: My new colorectal cancer diagnosis just proves that someone can do everything right but sometimes people that technically “shouldn’t” get cancer, because of their preventative care efforts and overall health, still do. When Diane underwent treatment for her previous breast cancer, she experienced hair loss. David and one of their sons, Daniel, shaved their heads in solidarity and accompanied her wig shopping. DIANE: I love this picture for so many reasons. The hair loss didn’t really bother me. I figured, this is a physical thing that happens to so many people... so I just decided to rock it and own it! TO EACH OTHER TO DAVID FROM DIANE: I just really appreciate everything that you do for me. TO DIANE FROM DAVID: I am accompanying you on this journey. It’s YOUR journey, I’m just a part of it. Lastly, I can’t say this enough: I’m with you through this, wherever this may lead. It’s important and matters to me to be a part of all of this with you. To read more about Diane and David’s story, visit careguide.info

LET’S TALK ABOUT IT

Cancer takes a toll on many aspects of a couple’s life. The hormonal and overall physical changes that men and women may experience through cancer can highly affect the sexual dynamic between a couple. If sex was a part of the relationship before cancer, acknowledge how it may be affected by the diagnosis.

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ADDRESS THE ISSUE 1) TALK TO YOUR SPOUSE. How is it affecting each of you? What questions do you have for each other? Communication between partners is the most crucial part of finding solutions for you both. It doesn’t matter who brings it up as long as both are open to having an honest conversation. 2) Use your medical team as a resource. Ask your oncologist, nurse practitioner, nurses, palliative care physician, doctor of oriental medicine, or social worker about concerns you have. If you aren’t satisfied with the level of guidance you received from one professional, talk to someone else. Keep asking! It’s an important issue and you deserve answers. 3) Discuss your concerns with a trusted friend/someone who may understand/can help. The couple may need to seek alternative ways to “keep the spark” in the relationship. Intimacy can take many forms. Seek other ways to feel intimate with each other and redefine what it means together. C.A.R.E. – 98

In My Shoes...

In My Shoes... As a Wife: Courtney

As a Husband: Jerry

ABOUT HIS WIFE Lois’ outlook is so phenomenal. Here is this woman who undergoes treatment and she goes to the cancer center and she’s a friend to EVERYONE. She makes other people feel so special. It makes me feel good to do things for her. ON CAREGIVING I try to listen to determine what part she wants me to play. I can be overprotective of her sometimes. And when she says “look, I want to figure this out on my own,” then I listen to her and help give that independence that she wants. Caring for her is not a burden. BEING TOGETHER We have approached Lois’ cancer together. Coming up with game plans and listening to each other often. But truthfully, cancer isn’t our only focus. There are days where we don’t even talk about it. Besides spending time with our grandkids, going for walks is one of our favorite things to do together. ADVICE TO OTHER COUPLES Listen to the needs of each other and you start to learn how the other one is thinking. Don’t get ahead of yourself. I used to look six months in advance– now I just focus on the day. One day at a time. OVERALL I’m going to continue to be right by her side. Sure she has cancer, but we are living on. I just have that real, pure love for this woman... 37 years married, and it’s just getting stronger. We are going to continue to be there for each other and enjoy every day. Together... LIFE IS GOOD. To read more online about Lois and Jerry’s story, visit careguide.info

WHEN IT ALL BEGAN Thinking back on July 8, 2015, I still get goose bumps. That was one of the scariest phone calls I have ever received. I frantically called family, and had to start making decisions that I could have never imagined making after only two months of marriage. The four days that Scott was in a coma were the longest days of my life. The first thing he did when he woke up was grab my hand. IMPACT ON A YOUNG COUPLE Brain cancer has for sure delayed many of our milestones in our marriage and caused some struggles. Unfortunately, we haven’t yet been able to take our honeymoon; buying our first home has been delayed, as well as starting a family. Our marriage did not start off as the “fairytale” that I had hoped for, and it took me a while to let that anger and frustration subside. I have learned to appreciate so much. The struggles that he and I have gone through so quickly in our marriage together have brought us so much closer. We appreciate each other and the little things so much more than we did previously. My husband is such a strong man, and I am so incredibly proud of him. ADVICE TO OTHER WIVES It can be hard to handle and cope with the person you love changing so often. Just try and listen to your husband, find out how they are feeling. CURRENT IMPACT On December 13, 2017 he had his third brain surgery by Dr. Shields at CHRISTUS St. Vincent Medical Center. It has been an absolute emotional roller coaster. We have spent so much time apart, so that I can keep working here in Arizona to help support the both of us. It’s hard not being there when he needs me the most. I travel back and forth to Santa Fe, where he will be until the wound is completely healed (see page 78). I also had to take another job last year that provided me more flexibility to be with Scott, but also meant a very large pay cut. It has been a very hard year, but we make it work. I will do whatever it takes to keep my husband here and to continue this fight with him. To help support to Courtney and Scott during this time, donate at: bit.ly/careforscott To learn more about Scott’s and Courtney’s story, visit careguide.info

C.A.R.E. – 99

VOICES FROM EXPERIENCE – Tell each other how you’re feeling. – Be sensitive to their needs. – Ask open-ended questions. – Develop a game plan of how you are going to approach this. – Make chemo days into a date and go do something together after. – Allow the situation to bring you closer, with more appreciation for each other. – Cancer is a part of our life now, but is isn’t our life. There are many days that we don’t even speak of it. There are other days where it worries us. But we manage to get through those days with teamwork. – Teamwork is what we’ve had for many years and will continue to have through this journey together. – Don’t guilt your spouse about how tired you are. It’s ok to be tired together. – Living every moment in thanksgiving of our life together is what gets me through each day – one day at a time!

– Phrases like, “You are so beautiful” or, “You’re handsome” will go a long way to your spouse, who may feel insecure during this time. Affirmation in this way helps build confidence. – The spouses have to be patient, because the side effects from the treatment are just overwhelming. – Cancer is a really nice time to live out your vows. – A good sense of humor is helpful. We made a commitment that cancer wouldn’t change or define who we were and that we were going to laugh about someting together every single day... and that’s exactly what we did. -The Bacas – Every time I looked into his eyes or held his hand during has battle, I was reminded of how much I love him and will forever... -Mrs. Ted Lopez

In sickness and in health

C.A.R.E. – 100

Communicating your diagnosis to family members is a crucial yet oftentimes difficult part of beginning your cancer journey. The challenge becomes increasingly difficult when you’re trying to navigate the discussion with your child[ren]. Children of ANY age will be affected by a parent’s diagnosis. No matter how old your child is, young or adult, cancer raises the fear that you will leave them and their family. It’s important to address this fear and let them know about any plans that have been made. It’s important to talk about your situation early, and as often as necessary, so your child’s imagination matches the reality. Children are quick to sense tension and stress in the family. Calm conversations about the facts can help each child understand what is happening. Children understand more than the adults in the family think they do. They usually have a fairly good idea of what is going on around them; not sharing honest information with them only cultivates fear and anxiety. Let your child know that some changes may be necessary. Your child may see you crying or upset from time to time. These are good times to let them know that cancer is a scary disease and that it’s ok to have strong feelings about it. It’s also a good time to reassure them that the family will work together to handle it. It creates confusion for children of any age to overhear conversations with no explanation.

Approaching the Situation Be patient and remember this is a process. Give small amounts of information at a time, if necessary. You know your children, so do what feels best. TRY TO: ✔Use words appropriate to the child’s age and vocabulary. ✔ Allow them to ask any questions they want. ✔ Ask them if there was anything that you said that scared them or didn’t make sense. ✔ Listen to their concerns. ✔ Let them feel included in your process. ✔ Reassure them of your love for them.

MULTIPLE CHILDREN

If you have more than one child, talk to each one individually so that the message and approach may be tailored to their maturity and level of understanding. Involve all children and give them information as you see appropriate based on what each needs to hear.

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ALL CHILDREN NEED THE FOLLOWING INFORMATION: • The name of the cancer, such as breast cancer or lymphoma • The part of the body where the cancer is • How it will be treated • How their own lives will be affected • Information on your decreased availability due to appointment schedule • Increased housework by other members of the family • Physical/emotional changes that they may witness in their parents due to the illness. Brace them for this early as they or you might not feel comfortable discussing these changes as they are taking place. C.A.R.E. – 101

RELATIONSHIPS & SUPPORT: Talking with Your Child

Talking with Your Child

Approach/things to consider at different ages AGE 1-8 Speak simply about the diagnosis “The body is made up of lots of different parts. When someone has cancer, it means that something has gone wrong with one of these parts and it’s stopped doing what it’s supposed to do. Part of the body is no longer normal.” AGE 9-18 Go into more depth about the cancer – and the changes it will create • Information on your decreased availability due to appointment schedule • Increased housework by other members of the family • Physical and/or emotional changes that they may witness in their parents due to the illness. Brace them for this early, as they/you might not feel comfortable discussing them as they are taking place. AGE 19-23 Involve them on details of your health • May ask more technical questions based on experience in life or stories they’ve heard • May be more difficult to monitor their coping mechanisms due to geographic issues (i.e., college, job locations)

AGE 24-35 They understand more, so involve them in details of your health • May be more difficult to monitor their coping mechanisms due to geographic or responsibility issues (i.e., career, spouses/families) • Be honest about how they can help and what the situation looks like AGE 36+ Collaborate with them on helping manage the diagnosis • May be more difficult to monitor their coping mechanisms due to geographic or responsibility issues (i.e., career, spouses/families) • Be honest about how they can help and what the situation looks like • Give more responsibilities to them to help manage your spouse/other children (if applicable) GRANDCHILDREN Grandchildren can also be affected by a person’s cancer. Recognize that your child is trying to navigate through their feelings, as well as their child’s (like you are). So, work together on what the best approach is for the grandchildren.

Addressing an aggressive diagnosis

Setting a tone As you have been able to notice, your mom hasn’t been feeling good. She has cancer. Now, we aren’t 100% sure how it is going to go, what we do know is that we will all be focusing on the blessings along the way. I’m sure you have a lot of questions. We are both here to help answer those, as best we can.

My cancer is a hard one to treat and I’m going to do everything I can to feel better. I don’t want you to worry about the future right now. I’ll tell you if anything changes, and I promise to always tell you the truth. I want you to ask me questions and let me know if you can’t stop worrying. We’ll work on that together.

Involving Others A parent’s first inclination in time of crisis is, “I have to handle this.” Sometimes it is helpful to call in some outside assistance: • Use a social worker/counselor to help with specific phrasing for any conversation you need to have with your kids. • Have an outside family member or close friend step in and be more involved with your children/ offer another source of support. • Ask someone close to your child (teacher, close friend, coach, etc.) to be “on-call” to step in if needed. C.A.R.E. – 102

CLIMB® PROGRAM Cancer Education and Support for teens and children of cancer patients A Cancer Community Program

CLIMB® is a core group free support program for teens and children who have a primary caregiver with cancer. This could be their parent, guardian, grandparent, or another significant person in the teen’s/child’s life who acts as their primary caregiver. It is designed to increase the teen’s/child’s knowledge about cancer and the ways it is treated, by providing early tools for emotional support to cope and normalize feelings the teen or child may have about cancer and the special adult in their life with cancer. The parent or guardian also learns how their teen/child manages emotions, and how to talk about their cancer with their child. WHAT DO YOU DO AT CLIMB? Through art projects, games, and discussions CLIMB® builds on the child’s or teen’s strengths to enhance their ability to cope with the stress associated with the parent’s/guardian’s illness. CLIMB® works to normalize feelings and assist in appropriately expressing feelings for the whole family. The most important aspect of the program is that it decreases the teen’s or child’s sense of isolation that a cancer diagnosis in the family can bring. CLIMB® welcomes all families from the Albuquerque Metro Area regardless of treatment center/provider. To learn more contact Alexandria Tavarez | 505-857-8460 alexandriat@nmohc.com • CLIMB® Children’s Lives Include Moments of Bravery is a program of: The Children’s Treehouse Foundation

JESS QUIRING

Sr. CLIMB Facilitator and Program Coordinator Oncology Navigation

Jess (middle) pictured with her daughter and son.

A Dose of Info from The Pros

HANDLING YOUR CANCER WITH YOUR CHILDREN Always be honest. Don’t try and hide what is happening or how it is impacting you, your spouse or the family. Children and teens figure things out quickly and if you leave them to come up with explanations of what is happening on their own, in most cases, what they imagine is far worse than the truth. Children and teens go into protective mode and often hide how they may be really feeling or are not sure how to express it –even in the most communicative families. The child or teen that may seem to be handling things well may need the most support or opportunity to express themselves, while the child or teen acting out is finding a way to let out their emotions, although not necessarily in a healthy way. Parents should also know that kids and teens tend to protect their parents from their own feelings, so as not to add to the emotions and sometimes family chaos that cancer can bring. When the parent or guardian is all through with treatment and things seemed to have returned to a sense of normalcy, a let-down of emotions can occur with the kids. The kid that seemed ok during the journey can now be “not ok.” Parents can be compassionate and take the time now, to talk again, about how their child or teen is doing. C.A.R.E. – 103

In My Shoes...

Deb

DEB – MOTHER OF WESTON When I found out that I had cancer, I told my son, Weston, that we were going to do everything possible to make sure that we got rid of it if we could. I continually reassured him that I would work to get healthy and strong again. I explained the treatments that I was having, in age-appropriate ways, so that there was no scary mystery. When kids aren’t sure what is going on, sometimes they come up with imaginations that are scarier than reality. So he wouldn’t feel powerless, I made sure to come up with things for him to help me with that were not overwhelming for him. I wanted to make sure that he did not feel that he needed to take on extra responsibility, though. I wanted to make sure he knew that I was still the grown-up and that his needs would be met. Having cancer has taught me to be more honest about when I need to rest and when I need to ask for help. I hope that this experience has modeled for my son both self-care and caring for others. To learn more about Deb & Weston’s story: visit careguide.info

Resources CANCER SERVICES OF NEW MEXICO: Offers free Family Cancer Resource Bags to help parents discuss the cancer journey with their children. Materials are targeted for children aged 4-12 as well as for teenagers. Get one today by calling 505-259-9583. GERARD’S HOUSE/STEPPING STONES: Support program for children ages 3-21 who have a family member living with a lifethreatening illness 505-424-1800 gerardshouse.org | info@gerardshouse.org CANCERCARE FOR KIDS: Online support program for teens with a family member with cancer 800-813-4673 | cancercareforkids.org KIDS KONNECTED: For children and teens whose parent has cancer or who have lost a parent to cancer 800-899-2866 kidskonnected.org KIDSCOPE: Online materials and virtual comic book for children about chemotherapy kidscope.org

Camp Session Week 1: August 5-10, 2018 YMCA Camp Shaver 22900 NM-4 Jemez Springs, NM 87025 campkesem.org/nmsu | 260-225-3736

y hated ever ve cancer. I k that I’m ha I at th u in ll yo n, er th t you to ev d to do is te lp my hild/Childre Dear My C hardest things I’ve ha at to you. I don’t wang to do my best to he really e th in th is, I ce f go th un m am o no I fr One o an at ly th to ving know ll me you negative second of har you. I need you to t to impact your life than I have before. Te ort in this fo an e pp re w o er d su n’t um not th your love an w you at I need yo ght now. I do condition ri want you to know th e bit tighter...becausenest with me about ho n care tl I ke lit ta ho ut a B u be just ays be don’t. ask that yo above all you to alw en. Hug me love me oft medicine to me. I justur parent and I want way, for normalcy. But e e yo lik m ill , in so am st truly is nt ..somehow MUCH. r or not– I – Your Pare feel. Cance ed you to lean on me.ing- I LOVE YOU SO th ne ill ne o w o of. I st kn to you else I need

C.A.R.E. – 104

One of the worst things a person could hear is that their parent has cancer. The news is absolutely numbing. For at that moment, you, too realize that your life will never be same. The feelings and reactions of a child of someone with cancer may vary based on his or her dynamic with the parent, role in the family, and age.

Areas where children may struggle AGE 1-12 • Understanding all of the implications of cancer • How different you look/the way you look to others and how they stare AGE 13-18 • Having a good grasp on all of the implications cancer has on the family and potentially on them • What they’re supposed to do/act like through your battle AGE 19-23 • Deciding the balance of college, work and involvement in your life • Curious as to what the future will look like/if you’re going to get better • What questions to ask/how to act as a response to the news AGE 24-35 • Deciding their involvement (being caregiver, moving closer, making career or financial adjustments) • Managing the other parent’s emotions • Managing thoughts of you not being there for milestone moments (wedding, graduations, career moves, time with grandchildren)

AGE 35+ • Balancing career/family of their own and care for you / other Most children, are parent • Managing some of curious about whether or not their parent’s the practical things health will improve. if both parents are unable to do so • Managing the other parent’s emotions • Deciding their involvement (being caregiver, moving closer, making career or financial adjustments) • Managing thoughts of you not being there for milestone moments (wedding, career moves, time with Regardless of age, grandchildren) children just want • Questioning to continue to share their own milstone moments and health and the special memories with cancer’s genetic their parent(s). implications

C.A.R.E. – 105

RELATIONSHIPS & SUPPORT: Viewpoint of Your Child

Viewpoint of Your Child

In My Shoes...

Weston

WESTON KELLER: SON OF DEB I wish someone told me that cancer wasn’t always fatal. That would have eased a lot of my stress because before, I just kept thinking to myself, “Is mom going to die?” I encourage other children to stay hopeful if your parent has cancer. If you give up, you have already lost. I enjoy my time with my mom. I love it when we go to the movies or on bike rides – cruising through our neighborhood together. We love the outdoors, so it is great when we go camping. I want to say: Thank you, mom, for your never-failing sense of hope and courage. You have been through so much, yet you are determined to keep going. You perpetually do everything it is humanly possible to keep us moving forward. I love you, mom. To learn more about Deb & Weston’s story, visit careguide.info

VOICES FROM EXPERIENCE – Embrace the fact that it simply is unfair that your parent has cancer. It’s okay to think that. – Try not to think of all of the milestones in your life that your parent could be missing – take advantage of the good days when they have them. – Even from afar, try and stay connected. – Find a strong support system.You are going to need people outside of your family to be able to lift you up through this. – Take all of your pent-up emotions out on your local pharmacist when picking up your parent’s prescriptions.You have to release that stuff somehow, right?! (I’m kidding. Kind of...)

– Spend some time with the other parent too. It’s important you all have a healthy dynamic through all this too. – Prioritize yourself, even when you don’t want to.Your parents will be grateful for that. Also, know that showers are magical. – Allow yourself to feel all the crazy, mad, sad, confused and insane emotions all at the same time. There is no way to fully prepare for this. – Be ok asking for help.You will need a support system of family and friends; don’t be shy about asking for them. While your situation is unique, there are people who have gone through similar experiences and would love to be there for you. – Two words: Coloring books.

nestly. Please ving cancer, ho handle you ha pretty clueless right now. I , to nt w re ho Pa y re M su r t I’m the Dea ays be one of en start? I’m no r you because Where do I evcan help make this bette fo that you are and will alwt thing I have probow I es Kn w rd k. ha ho e e sic g th in had to tell m have cancer” is yself why this idea of you be really hate the le I know.You telling me, “Id practically process. I ask m different treatment strongest peopto mentally, emotionally, an what you look like or how You don’t have to I don’t are ysical changes, I will too. still see your suably ever had left confused. ph can happen...and amu at times. If you own your tand you are human...and wishes. No matter may “make” yo ly anything to me– I undersout your feelings, fears and sorry if I act weird, prove absoluteu can be honest with me ab ward you for strength. I’mver prepared for this. perpowers.Yo I will still oftentimes look to times. I really was just ne same time, I’m sorry how old I get, , or just simply not myself at this harder for you. At the nism in attempts to or disengaged too emotional and I make face... it’s my coping mecha said THANK YOU I’m sorry if I’mrough this, keeping a tough u. I KNOW that I haven’t U SO MUCH. if I am stoic th d make things worse for yoantly know that I LOVE YO our Child –Y not crumble anerything) and most import enough (for ev

C.A.R.E. – 106

When a child, teen or young adult is diagnosed with cancer, parents and other adults involved in their daily life are often the keys to how the family copes with the diagnosis. Realize that you may never know what caused the cancer. Learn as much as you can and move forward by focusing on the child’s or young adult’s future.

For parents

For children THEIR DIAGNOSIS At any age it is extremely difficult to hear that your body isn’t working at its best, especially when you know what you and your peers are capable of. Children and teenagers often respond to news of a cancer diagnosis with a range of emotions that can reflect those of their parents.

Infants-young children v Give simple explanations of what’s going on. v Do not tolerate aggressive behavior and continue to teach them to express feelings in ways that don’t hurt them or other people. v Create opportunities for physical activities. v Reward good behavior for cooperation with tests and procedures – discuss the situation with social worker.

CHANGES TO EXPECT v Needing to take time off from work/ adjusting school schedules and communicating with teachers. v Signing treatment consent forms and making important decisions. v Needing help to care for other family members. v Feeling shock, disbelief, fear, guilt, sadness, anxiety and anger.

School-age v Encourage them to identify their feelings with words. v Offer repeated assurance that they did not cause the cancer. v Pay attention to unasked questions and when they discuss fears and concerns.

Teenagers-young adults

No matter how old a child gets, their parent will always be affected by their diagnosis.

v Include them in all discussions about discussion and treatment planning. v Be willing to tolerate some reluctance to share thoughts and feelings. v Allow them to talk privately with professionals. v Offer assurance that the crisis will be managed. Be attentive to your children’s reactions and seek advice from the cancer care team about finding extra counseling support, for them and you, if needed.

RELATIONSHIPS & SUPPORT: A Young Diagnosis

A Young Diagnosis

Respond quickly Get connected with a child life specialist in order to have appropriate care and guidance for your child.

The option and right to a second opinion is always there and important to explore if parents have doubts. Sometimes, however, parents have so much trouble believing the diagnosis that they simply are dissatisfied with any news or plans they hear. Once a diagnosis is confirmed, it’s important to remember that long delays may harm the overall chances of responding well to treatment.

C.A.R.E. – 107

FIX SPACING

In My Shoes...

As a mother: Kaci

FROM THE BEGINNING Our son, at the age of three, began having random times of vomiting. During this month his behavior quickly accelerated and he became very difficult to manage. My motherly instincts told me something was wrong. I pursued, not taking “he’s fine, just wait a few more days,” as an answer – which let to a CT scan... The moment I heard those words, I was in shock and disbelief. I knew something wasn’t right with my son, but never dreamed cancer had invaded his little body. I still can’t wrap my head around it, even as we approach his 10 year anniversary. HER SON’S REACTION At his age, he never had any fear of death. His only fear, at the time, was the blood pressure machine and having to learn to take a pill. We spent countless nights in the hospital. Playing every pretend game you can imagine, nerf gun wars and decorating the large window in our room. Cancer treatment for a young child is hard because they don’t truly understand, nor can you really rationalize with them at that age. NOW Our son is now 13. Healthy as can be, with long term effects of chemotherapy that are manageable. I hurt for him dealing with these side effects, but I’m grateful for the medication that gave him a new chance at life. When our son had completed his chemotherapy regimen we were relieved and scared to death. Grateful that the Lord spared his sweet life with a cure but apprehensive knowing the that the treatment was done – and removing the very thing that kept his cancer at bay. FAITH IN THE FIGHT I believe that cancer steals from anyone battling the disease, but if we trust in the Lord, good things follow the bad. Always. To learn more online about Kaci and her son, visit careguide.info

Resources U27 CANCER SURVIVORSHIP GROUP FOR ADOLESCENTS AND YOUNG ADULTS UNDER 27 Contact: 505-255-0405 STEPPING STONES SUPPORT PROGRAM for children ages 3-21 who have are living with a life-threatening illness Gerard’s House for more information: 505-424-1800 gerardshouse.org | info@gerardshouse.org FOR MORE INFORMATION ON A YOUNG DIAGNOSIS: cancer.org or 800-227-2345 SUPERSIBS – ALEX’S LEMONADE STAND SuperSibs, a program of Alex’s Lemonade Stand Foundation, is dedicated to comforting, encouraging and empowering siblings during their family’s battle against childhood cancer so these children and teens can face the future with courage and hope. alexslemonade.org | 610-649-3034 C.A.R.E. – 108

FAMILY IMPACT SIBLINGS (ANY AGE) At any age, siblings may deny or minimize their responses or emotions because they don’t want to add to their parent’s distress. They, too, may have trouble concentrating on school/work and focusing on their well-being.The older one gets, the more likely they are to want to be involved in their sibling’s journey and support them and their parents.

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PARENTS Having a child with cancer will make an impact on the parents, and so there is that much more importance for the spouses to be on the same page. Make your family your top priority and find time to communicate with your spouse each day. Find time to talk about anything else other than cancer.

In My Shoes...

Myles

GETTING THE NEWS I had been very sick the entire month of September and was told to go to an Albuquerque emergency room right away. I still remember how the doctor delivered the news... “Mr. Sanchez, do you know what Leukemia is?” I said, “yes.” He said, “Ok good, do you have any questions?” Great delivery right? I knew my life took a major turn that night but I didn’t know how much or to what extent. I knew I would have to put everything on hold... job, relationships, money – and that “life” had to stop for a while. AT HIS AGE Dealing with this in my early 30’s has been tough. I want to be out and about working, talking with people, going out, having fun, and living life, but instead I was in the hospital for two months and then at home for two months. I felt like I was just hitting my stride in life when this came up. I was having a great year at work, getting ready to buy a house and traveling all over the country. Then, suddenly, my parents are helping to take care of me. My dad has been my anchor of support. It is very humbling and sobering, though. It has, however, given me a lot of time to think and pray and re evaluate my life. It has been a great time of rest and refocus. PERSPECTIVE ON CANCER No matter how hard cancer is or how much it affects you or seemingly derails life, it is not the end. There is hope, there is care, there are solutions and medicine is amazing in this day and age. Honestly, things are going to suck really bad physically and mentally, but you must stay 100% focused on your recovery, taking a positive mental attitude and truly believing that you WILL get through everything and come out fine on the other side. I think about how there are worse kinds of uncurable and untreatable cancer, and so I am very thankful about mine. NOW I feel like I’ve been in this tunnel for five months, now I just have three more to go. My upcoming stem cell transplant in Colorado should cure everything. This would give me a 70% chance of the Leukemia never coming back. NOTE: Myles had his stem transplant, in Denver, on February 16th, 2018 To help support Myles and his family with the extended stay in Colorado donate: at bit.ly/careformyles To learn more about Myles’ story online, visit careguide.info C.A.R.E. – 109

RELATIONSHIPS & SUPPORT: Family Dynamics

Family Dynamics

Cancer, at any stage, will spread to the entire family and all will feel its impact. Every family is different, with many variables that need to be considered when trying to navigate through a loved one’s journey. A diagnosis introduces many structural changes in the life of a person, family and friends, there needs to be discussion about coping with the changes cancer brings to the family life.

For Adults: Changes to Expect • Needing to take time off from work • Signing treatment consent forms and making important decisions • Needing help to care for other children in the family • Adjusting school schedules and communicating with teachers to ensure a healthy return to the classroom • Feeling shock, disbelief, fear, guilt, sadness, anxiety and anger

For children: dealing with the diagnosis

• Infants, toddlers, children and teens will each respond differently to their cancer diagnosis. Be attentive to their reactions and seek advice from the cancer care team about finding extra support.

For all in the family: dealing with the diagnosis • Seek comfort from other family members and friends. • Ask questions and get answers from the medical team. • Learn about the short and the long-term effects of the recommended treatments. • Learn how other parents in your situation have coped or are coping. • Take time for yourself and find healthy ways to release your anger and other emotions. • Involve others to get support. • Get help from community sources.

A FAMILY PROMISE

It’s important for all immediate or relevant members of the family to be on the same page in the diagnosis and set expectations for themselves for the situation. 1. Make the one with cancer our focus to the best of our capabilities 2. Do what we need to do to keep ourselves healthy 3. Communicate our feelings to each other/trusted friends or a professional 4. Surround ourselves with positive and supportive people & utilize resources 5. Try our best to adjust to the new “roles” and help support each other lives 6. Respect & not try to change each other’s coping mechanisms & communications styles (unless they are detrimental)

7. Have a mature, calm conversation free of accusation or hurtful words if we disagree 8. Apologize if we take out our frustrations about the situation on each other 9. Put our own individual preferences aside/let bygones be bygones if our loved one has a special request for us 10. Forgive anyone who doesn’t adhere to these rules and keep focusing on the one living with cancer

C.A.R.E. – 110

Our Family

_____________________ Signature of All of Us

Impact on a Family Financial Treating cancer can put a huge strain on a family’s financial situation. Family members should seek out solutions.

Practical It is helpful to assign roles to willing

family members and friends so that there is a clear understanding of duties each week. This helps to level out the burden of care, especially if people in the family live afar.

Whereas cancer has the potential of changing perspectives, it does not have the ability to change a person. So with that, find comfort in that most family members will act and respond just as many would expect. By the same token, if a marriage, a sibling dynamic, a parent/child relationship was strained before cancer, this situation will definitely test it and continue to be more challenging.

With everyone handling the process differently, tempers can flare and divisions can occur. professional therapist, a support group, or clergy to Navigate through those divisions first, so facilitate communication, especially about painful that the tenstions can be minimized and the and difficult topics. supportive If you are a caregiver to one energy for your of your parents, do your best Distance There are ways to make your loved one loved one can to not make the other parent feel any less important or feel cared for from miles away. It’s a matter of how be maximized. loved. Despite your lack much responsibility you want to take on. Between Seek a of energy, it is important professional text messages, Skype, pictures of activities going to make concerted efforts for individual on in your life etc- and staying in touch with the toward this practic. or group caregiver (family member) can make the miles counseling, if between you and the situation a non-issue. necessary.

Emotional Communicate. Seek help from a

People pleasing Some members of the family feel more pressure than others to “hold everything together.” When that person with cancer is the one that typically carries the largest responsibility in the family, it is very common for a pressure to remain strong for everyone else. Make a valiant effort to not spend your time worrying about your family worrying about you. You need all of your energy to yourself and to manage your health. The one with cancer oftentimes spends a lot of time putting energy into making sure everyone around them is taken care of, and still wants to be helpful. It’s a delicate balance on all ends to navigate this.

In My Shoes...

Diana

I had a biopsy and two days later I got the news that it was positive. All I could think at that moment was about my family, and wondering how it would affect them. All members of my family really supported me! After my bilateral mastectomy, my daughter taught one of my grandsons how to make my coffee– so every morning he would set his alarm and make it for me. I could hear the alarm and he would put my coffee next to my chair in the living room as my cue to get out of bed! My youngest grandson would adjust my little pillows, under my arms, to support the drains. My oldest grandson took care of the chores and they were all three very attentive to my husband and I. These are all happy memories because I watched them show their kind and caring nature. What also helped was that my husband told me I was so beautiful and how much he loved me every day. My daughter told me how brave I was and how she was proud of me. My job had always been to take care of everyone else, it was tough to sit back for a little while. But I just had so much support from my family and I am forever grateful for! To read more online about Diana’s story, visit careguide.info C.A.R.E. – 111

Family Strategy First and foremost, once the news of a cancer diagnosis the family needs to decide who will be the primary caregiver(s). Setting that from the beginning will help further discussions on the “game plan” of how everyone else will be stepping in. If young children are involved and it is a parent’s diagnosis it’s important for the other parent to step in and ensure your children are taken care of. Family dynamics, whatever they may be, have the potential of impacting how a person is cared for.

The “tackle head-on together” strategy will continue to play a vital role in the cancer journey especially when it comes to who you are going to tell/ what/when. Talk to your caregiver/loved ones, dissect your visit and medical information and decide what you are going to share with others. This way there is one consistent message to all and a plan on how things will be communicatied. This way with each move everyone makes, it’s in the right direction for the situation.

COPING MECHANISMS

“The serious one” “The sentimental one” “The responsible one” “The disengaged one” “The helpful one” “The sad one” No matter how close you are to the person with cancer or your loved ones, you will never know all that anyone else is experiencing or feeling in the situation.

NC A L G A AT

Cancer flips worlds upside down and there are many changes that can come along. Some things, do, however, seem to remain the same among family members. However people dealt with grief in the past they most likely will continue those habits. If one can recognize and identify exactly how they deal with crisis in their lives, their reactions to the diagnosis might make more sense, bring perspective, and allow them to cope in a healthy way. Members in the family might each take a different “role” when it comes to how they deal with the diagnosis:

“The poor me one” “The funny one” “The I don’t want to talk about it one” “The mad one” “The organizer” “The fixer” One of the hardest tasks for a family is to have everyone understand each other. With these differing coping mechanisms, this could prove to be quite challenging. Recognize that some people may need support than others in this situation. Be patient and as gracious as you can. For the more the famiy members seek to empathize and cope with each other, the better off your loved one will be.

Communication styles However people best expressed themselves and communicated in the past will most likely be how they choose to communicate in this situation. If one can recognize and identify exactly how they deal with crisis in their lives, their reactions to the diagnosis might make more sense, bring perspective and allow them to cope healthily. Make it a priority to do memorable things as a family and individually with your loved one. C.A.R.E. – 112

Let your loved one still help and do things for you. A lot of their identity feels like it has changed– still depending on them, in moderation, is important.

Clashing caregivers Sometimes when there are multiple people caring for someone, there may be some conflict between the caregivers. The friction could be over who does what and what is best for the loved one. The caregivers might be taking things out on each other without realizing since they are both probably trying to protect their loved one from their frustrations and emotions. Building a team is an important element so that one person does not bear all the work. However, there needs to be a “quarterback” both for medical and all other caregiving issues. Divide and conquer the responsibilities. TRY TO: • Remain calm in all interactions, thinking before speaking • Not put your loved one in the middle. • Prevent adding any additional stress to the situation. • Your loved one doesn’t want that and it certainly won’t help anyone in the situation. • Have an open dialougue with each other to help faciliate teamwork. • Re-assign separate tasks, if necessary. Know that if a clash happens, it’s ok and bound to happen at some point, given the pressure of the situation. Just always remember that you are on the same team, and it is best for everyone involved to always work together.

Handling the holidays These days just might not feel quite the same. Either roles in your family have been adjusted so much that it feels unnatural or uncomfortable, or there are emotions and fear around what that holiday of that year may mean. This may put pressure on the whole day and tension in the household. Continue your ritual celebrations of birthdays and maintain the traditions that you can around the holidays. Be flexible with your plans. Overall, be open to re-defining that day with new traditions and ALWAYS be sure to cherish what it brings.

DYNAMICS

NC A L G A AT

Usually the dynamics that existed in a family prior to the illness are there only heightened by the gravity of a cancer Caring for a person with cancer is a journey for which no one is prepared. diagnosis. It’s important for everyone in the patient’s life to feel like they used to. In other words facilitate an environment that still allows; children to play, parents to mentor, and young adults to have a social and professional work life. As a family, protect the loved one away from negative or hurtful people as much as possible – which sometimes might be wellintentioned people, or even other members of the extended family.

ATTENTION: EXTENDED FAMILY & FRIENDS If it is a hard day, week, moment for the person– no matter how much you might want to be right by their side, know that, this might not be their wishes. Play off of social cues and seek direction from the people who have been most prominently invovled with the care of your loved one throughout their journey (caregiver/spouse, etc). Overall, regardless of how much right you feel you have or desire you have to be involved in certain things because of your relationship or history with them, every circumstance is different. It’s a fine line between ensuring your loved one knows that you care and forcing yourself into situations that are inapppropriate and unwanted. No matter your relationship to the person, if you are not the immediate caregiver or have been directly involved in their journey there’s a lot to learn. See pages 116-121 for morre information on how to be supportive. C.A.R.E. – 113

RING THEORY

E C N LA

A AT

HOW IT WORKS: When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Recognize where you lie in this ring and act accordingly.

COMFORT IN.

1. Main person affected 2. Caregiver(s) 3. Extended family/Close friends 4. Colleagues 5. Acquantances & Community If everyone sticks to the “Comfort In, Dump Out” system, there could be less friction between dynamics. Recognize where you are on the spectrum and act accordingly.

1 2 3 4 5 DUMP OUT.

As a family of faith: Kendra & the Kennedys

In My Shoes...

My mother had breast cancer when I was in 4th grade and my sister, Krista, was in 7th grade. I remember my parents sitting us down and explaining that she had to have surgery because the doctors found cancer. Both parents ensured us that everything would be okay. I remember my mom showing us her pinkie finger nail in reference to the size of the cancer. My parents also went out of their way to make sure we were involved in several extra-curricular activities so we didn’t have much time to think about it. My mother’s decision to have a mastectomy at the age of 40 taught me about vanity and love. She embraced her new body and taught my sister and I that “different” is still beautiful. I, of course, also give my father the utmost respect for teaching us the definition of true, unconditional love. Most of all my mother’s diagnosis taught me and my family the value of life and faith. Her unending belief in the power of prayer and love of God, I believe, brought her through her recovery. To read more online about Kendra’s story, visit careguide.info C.A.R.E. – 114

VOICES FROM EXPERIENCE – You do NOT have to be superwoman or superman. When you are down, you are down. – Looking up information, doing my homework so to speak, allowed me to feel like a had a purpose, that my mom’s fight was all of our fight, and that together we are all vital to her treatment. It also allowed me to think of practical immediate things, and took my mind off the worst case scenario, wallowing in sadness aspect. It helped me become a go-getter, more optimistic. – Be there for your parents...whatever that may mean- the best of your ability. Be there for your OTHER parent. The strain and stress can also impact them. – As a family you must stay strong. It is hard to see someone you love weak and sick. They are fighting, but they will gain strength from your strength. – It’s ok to cry...it’s okay to break down...it’s ok to do it together. – Remember that it’s not about you – it’s about them – their needs are paramount and need to be priority to all.

– Be careful about pushing family into attending or coping in a way that they don’t want to. Not everyone feels comfortable attending support groups or cancer-related events. Respect their boundaries. – Asking for help and saying ‘no’ is not a sign of weakness - it will help make you [your family] stronger. – Stay strong, stay positive, lean on each other. If you have a strong, supportive family, you are extremely lucky. Use that resource to bring each other joy, laughter and happiness. – Still do normal things with your parent. – It is scary to see people you love, and who you think are the best people in the world, the strongest, etc. suffer. You want to help make them better, like they have for you through all your ups and downs growing up. It makes you realize the importance of family, and spending time together. – Hug each other a lot. – Say “I love you” too many times.

nd aren’t ved one aand lo r u o t u n r, orried abroyour cooperationew we could k fo ily Membe ll are so w Dear Famugh, isn’t it? Wewaant to thank youne’s cancer. I nevesirde during this anwd This is tore what to do. I ont our loved o aving you by my nt to let you kno t really su tion as we confrat I appreciate h nough). I also wa ment. I know tha collaboraa team! Know thse I don’t say it e r your disengageme of comparing nd be such YOU (just in ca at you said and o t make this a ga apologize for a THANKrgive you for wh rntly and I will no ith that, I want tois. It’s just that I . that I foandle things diffe loved one, etc. Won you during th orries that I am we all h es more for our frustrations out same fears and wwe will all handle who do ce for taking my d are feeling the for you too and love you and nowas in advan u understand anay act I am here s all we can do. I a force, cancer h know yo, despite how I m w how, and that’ we? With us as Overall best way we knoess together, shall er ily Memeb this the take on their illn Your Fam m ro F – ! go y il let’s n this fam nothing o

C.A.R.E. – 115

RELATIONSHIPS & SUPPORT: How to Help

How to Help

** If you or a loved one is affected by cancer** SHOW or GIVE this section to your friends. You can also easily send it as a link: careguidesupport.com When it comes to having a friend who is living with cancer – is a caregiver or is somehow directly affected by a diagnosis, the feeling of helplessness may be overwhelming, especially if you’ve never had experience with the disease. With so many emotions, moods and shifts in conditions happening for your friend, it may be difficult to know exactly how to help, as they may not be properly communicating their needs. It is important to be aware of how your words and actions are perceived. Remember that a cancer patient and those in their lives had relationships before cancer hit and they are extremely important to maintain. The responsibility of maintenance just might fall on you, as a friend, a little more now. Fair or not, know that they are counting on you to help them through this in some way. As a friend of one with cancer/a caregiver, you aren’t expected to know what to say. But know that you are expected to make a strong and consistent attempt to be a support for that person.

Responding to a hurting friend

AFFIRM “Thank you for having the courage to share that with me.” Affirmation after vulnerability reminds the revealer that their honesty was heard and valued. ASK QUESTIONS ABOUT FEELINGS “What do you feel is hardest for those around you to understand?” VALIDATE AND EMPATHIZE “Your feelings are totally valid. I’m so very sorry you’re going through this.” ASK HOW YOU CAN HELP “What’s the best way I can support you right now?”

In My Shoes... As a friend: Matt

After my best friend from college was diagnosed with cancer, he and I sat down, barely shed one or two tears, and I assured him we would beat this together. We gave each other the manliest clench we’d ever given each other. Our friendship didn’t change; he and I continued to candidly tell the other to stop being worthless, and to change the world, etc. If your friend is a fighter, fight alongside them. If they don’t want to talk about their disease, don’t talk about it. If they want to play tennis, but you can’t stand the sport – get out your racket. If they want to get ice cream at 2 a.m., you’d better show up with some good Ben & Jerry’s. Overall, just spend time, really talk with your friend or family member, and ask them what they need. Even if you are sent away, dismissed, or ignored, still be supportive. Be there, so that you know they’re not alone, and so thaty they know that they’re not alone. Visit kevinrudifoundation.com to learn about the Rudi Foundation that Matt founded in memory of Kevin Rudi To read more online about Matt’s story, visit careguide.info C.A.R.E. – 116

BEST THINGS TO SAY “WHAT CAN I DO TO HELP?” Then make concrete plans on what you can do to help and DO IT. “Let me know if you need anything” is oftentimes vague. Ask specifically or give examples of what you will do and let them pick. If you’re lucky enough to get told what you can do, be sure to act on it/be there if they reach out. “I’M SORRY, I REALLY DON’T KNOW WHAT TO SAY. I DON’T KNOW EXACTLY WHAT YOU ARE FEELING OR GOING THROUGH. ” It’s ok to be that sincere – it will be refreshing to them. They know there isn’t much that can be said. Be truthful. They will appreciate how genuine you are. “I LOVE YOU.” The circumstances bring a lot of insecurities to all involved. Tell them loving things and continue to encourage them through the situation.

VOICES FROM EXPERIENCE DO: – LISTEN! Truly hear what your friend is telling you. Undivided attention is a priceless gift. Let them tell you their concerns and fears without trying to FIX them. Just listen. – Give pulse checks. Stay connected and be consistent. Keep asking how things are going throughout the journey without prying. Set calendar alerts reminding you to check in with a quick “hello” or offer of help on a regular basis. Reach out on days that might be especially difiicult. – Be responsive. Reply to every call, email and text in a timely manner. – “You look good. How do you really feel?” It’s important to acknowledge that looks can be deceiving.

and will do: clean house, cook, bring meals or gift cards or provide transportation to appointments. – Offer to babysit, pick up kids at school or host your friend’s children for overnight visits, if applicable. – Arrange and pay for a housekeeper to come in at convenient times. – “You are a strong individual but I’m here to support you through this.” – Allow people to have their own feelings and be willing to listen without – Send a text or call the next time you’re at the pharmacy or grocery store to see if your friend needs any items.

– Affirm what they mean to you. “How are you doing? I’m serious. I really want to know because you are very important to me.”

– Plan some fun activities out of the house and away from treatment. Make sure the times and places are convenient and be understanding if your friend has to cancel.

– Send random “thinking of you” notes and/or gestures, such as cards. Any outreach can show your love.

– Greeting cards, postcards and humorous emails and texts are easy ways to express your love.

– Keep your friendship a two-way street. Spend time listening to your friend but also share updates on your own life. Whatever you talked about before the cancer diagnosis will still be appropriate after. It helps with their sense of “normalcy.”

– Touch or hug your friend at every appropriate opportunity (if that was common in your dynamic) to show them you care.

– Apologize if you haven’t been there for them. Don’t give excuses. Just acknowledge your absence in their time of need and show desire to remedy it. – Do ask questions to show interest. – Forgive them if they don’t ask about your life as much are less in touch with your needs. It’s not that they care any less about you; it is just that sometimes they can’t get their minds out of their own situation. – “I don’t understand what you’re going through but I am here for you and want to walk this journey with you as best and as much as I can.” – Be clear when you offer to help, about what you can

– Tell them you love and care about them. Even if they don’t have the energy to respond, your message means a lot. – Schedule visits or times to hang out in advance – and with enough time for them to prep (mentally and physically) for the interaction. – Laugh with them! Humor always brightens a day. – Help your friend focus on good feelings and moments of happiness. – Be there months, years after the diagnosis. Your friend or loved one still needs you (probably even more as time goes on). – Attend (or start) a cancer-related event or walk in their honor.

C.A.R.E. – 117

WORST THINGS TO DO OR SAY Those with cancer and their loved ones frequently talk about unintentionally cruel, insensitive or seemingly harsh things that friends might say. Both the caregiver and the patient are fragile and vulnerable. Sometimes people think they are being supportive when they are not. DON’T WITHDRAW and don’t say anything because you’re unsure of what to do or say. “Ghosting” or ignoring a loved one during this time is not something that they will overcome easily. It may be harder to re-enter their lives at a later time. No matter how uncomfortable or guilty you may feel, their journey is much tougher — and they need you to be responsive. DON’T COMPARE “I know exactly how you feel” – even if you’ve known someone who has had cancer or you’ve experienced it yourself, EVERYONE’S feelings are different and no one can TRULY know what someone else is going through. There are times for you to bond over similarities, but don’t always make it about you and something you’ve experienced. DON’T TREAT THEM DIFFERENTLY Don’t stop telling them things about your life or joking around with them. They need normalcy and the relationship that you two used to have. They’ve lost a lot in their lives; don’t have them lose the dynamics between the two of you as well.

VOICES FROM EXPERIENCE DON’T: – Say “everything happens for a reason.”

– Get offended if your friend declines an offer to hang out,

– Hold it against them if they are unresponsive to your outreach or less than congenial at times. They are going through enough, so don’t blame them or criticize them for being reclusive.

– Offer “alternative” diagnosis or medical advice.

– Wait for your friend to ask for help. – Stare. They know they might look different. No need to bring more attention to it by how you look at them. – Say “At least…” or “Look at bright side – to start off a reaction to something they vented to you about. – Tiptoe around the diagnosis. If they know you know about the diagnosis, ask about it. Don’t ask passive aggressive questions. – Focus on looks. Just because they may look good doesn’t mean they feel good or vice versa. – Question their faith or spirituality if they are having a hard time. Just because they are struggling doesn’t mean they don’t have a commitment to their beliefs.

– Say “Yeah, I’m tired and busy too” if they vent to you. It’s a different type of fatigue and stress that they feel. One with cancer or their caregiver may feel like you are downplaying their feelings or their situation. – Be overbearing with too many questions if they are unresponsive. It will be evident if they don’t want to talk about it. – Say “You’ll be fine.” Sometimes overly optimistic reactions give the impression that you don’t understand the pain or severity of the situation. – Talk about a friend or relative of yours that is sick or dying (unrelated to cancer). It comes off as very insensitive. – Send “get well soon” messages. Cancer is a long journey and it isn’t that easy to get well. – Tell them how to fight or which treatment to undergo.

– Don’t blame them for distance in relationship. Telling a friend they need to take responsibilty for how they have made YOU feel while they or a loved one is navigating cancer is extremely selfish. They won’t forget you blaming them in quite possibly the hardest time in their – Rely on social media for interaction. If you have time life. to “like” things on Facebook, you have time to make an outreach. Take some initiative. – Freeze or divert conversations if someone wants to speak about how hurt they are or what comes next – Only discuss their illness. after life. No matter how uncomfortable you may feel, – Take more than 24 hours to reply to any outreach. They they need you to be responsive and present in this need to feel that you are responsive and available, dialogue. otherwise they definitely will not lean on you when – Say “You’ll get through this and it will all be over soon; they need you. just keep a positive attitude.” – Make excuses- for why you haven’t been supportive. – Try to “fix” them. Feel free to explain factors, but always end with: “But that’s no excuse, I should be here for you throughout this, regardless.” – Stop sharing things about your life.

– Make their cancer/situation YOUR story. It’s not your place to tell others about it.

C.A.R.E. – 118

Talking to your friend may involve awkward silences or times where you are unsure of what to say. Use this flow chart for an idea of how to direct the conversation based on what you are hearing/ inferring from your friend. It’s not always easy to pick up how they are feeling.

“How Are You?” Doesn’t want to talk: Fine. How are you (your loved one) feeling?

Feeling vulnerable: Oh, I’ve/they’ve been better.

Things have been super busy.

What’s been going on?

In terms of work, your family, your health, personally or what?

Fine.

I/they just don’t feel good, and we had a rough appointment this week.

Do you need anything? What can I help with?

What happened? What will make you feel better? (They tell you. Continue to ask questions so long as they seem engaged or want to talk about it.)

Nothing.

How about I (then give an idea) or Well I’m here and if you want to talk or, ANYTHING comes up please let me know. (See how they respond then follow their lead.)

Feeling overwhelmed:

Do you need anything? What can I help with? When is the next appointment? (They tell you). Act on what they said they needed help with and follow up with them after that next appointment.

Just everything... Okay, let’s take it one thing at a time. What is busy for you in terms of…(hit topics one by one - they will tell you.)

I honestly wish that I could just fix this for you. Would this help? (Then offer an idea to make them feel better, see how they respond, and deliver on a gesture.)

What do you have coming up? Any appointments that are particularly important to you or things you have coming up in your life? (Focus on that for a bit and mentally note what they tell you, so you can follow up with them.)

Many don’t want to “bring up the cancer” because they don’t want to “remind” others of the situation. Know that it is already on their mind 24/7 and when you don’t ask, it sometimes gives the impression that you simply don’t care.

C.A.R.E. – 119

If talking to your friend is unnatural to you, write a card or a letter, or send an email to help explain your intentions and your commitment to being there for them during this tough time.

Sample Letter to a Hurting Friend I know now thI at d you klik do is adisded an l g, al in } e d rt n u e l h e ri esp this, ing F ow youu’roer talk to you I gfeone of thosethdro ugh Dear {Hurt use I kInse ca lin e b u yo b m e yo u u yo m to ng to ut every time ng nothing or a good friend I am wrihti yi b e b sa g, in by t to ld the pain ve you’reardurt much wan ness to rr I had Iatwothue y. I so lery even ifcy awkw s. I’m t so u . b t , u ss so b gh , e u u friend r priva cliché el clumsy and cl going thro you’re w honor yoI uwant to be your but I fe ugh what I antnto so ro g. d th lin an n e e fe ly e e b e r u’r lo I have noewveexactly how yo n be rewal. ly out the pain cao t to talksaab w ho an not kntime I know thatdo ess. I w n n k ’t d n ’t o n d t same gh this … I just gh this.nIsifies this preses.nI don’t want to e u ro th d n throu ur frier times and inteyou feel anxiou ile you are in th– me to bueoyo es y wh lk about you . f happie teach in if it mak it so eas yo s Please it d having to e future you ta een able to talk . m r th e re fo t ak u s e o m if m t ab ti pas want to talk day ilty somuerse, I don’t wanyet t we’ve always ebrr ies-silently don’t out me – I feel gu y. And or an eating-ch d of co ad ail re m al n u talk abof the furnace. Aungh ca ay yo I d g for know ife, if I forget e m t midst consuming eno e know if it’s a talkin e L . k tt et to as this is ucate me. Let m ng you a la u, if I foergst ore, or bri ray for yo So ed th p n m o ca I fr n the g w in meth ow ho hack mdeo obetter Let me kinng, pick you up so gh thisI. W u to ro t th an g th w in e e go friend again. som . y you’rro g so sorric to ask hé-d olin and I’mkw u cl d yo ar ve lo I aw se u at th ca e B rn into head iffeI etul like I’ve been. e Sincerely, M than I for you, re e h d m an u nlea.co I’m with yo esy of bro end” court ri F g in rt u aH “Letter to

SUPPORTING FROM AFAR

NC A L G A AT

Being away from a loved one or dear friend that is hurting is tough. Recognize that the lack of face-to-face contact can create yet an additional barrier to quality and easy-to-read communication. Sometimes saying something like, “I wish I was there so I could give you a big hug or so we could [insert a special/funny/great memory here] together” is helpful to hear. Reach out and be responsive when they reach out to you. Ultimately, from afar, your job is more difficult but that’s not an excuse to not be there for someone you care about. Be persistent and don’t get offended if they don’t reciprocate. You might not be able to take them a meal or sit with them at an appointment, but there are small gestures that you CAN do to be “there” for them. Your goal is to make up for the miles in between you two and make an effort to do something. .. ANYTHING, from afar. C.A.R.E. – 120

MY FRIEND/LOVE ONE: What can I do from this list: 1) Tell others/keep them posted 2) Send you something silly 3) Call you at your convenience and listen to how you’re doing 4) Call you at your convenience and talk to you about other things 5) Sing you a song on your voicemail so you can listen to it and laugh 6) Send thoughtful quotes to help to get through this 7) Pray 8) All of the above 9) None of the above 10) OTHER: __________________

“Should I give up?” While your loved one or friend is dealing with cancer for themselves or a loved one you might try and yet not seem to get the effort reciprocated. There might be a point where you start to question things like:

y Did we sa something wrong?

Are they mad at me?

What do I do?

Many times people who ask themselves these questions answer them by retreating and reducing outreach. If you have reached Hi! How are you doing? out many times and aren’t getting responses, don’t take it personally. Understand that you can’t possibly understand their situation and as hard, HEY... exhausting, and even humbling as it might be – keep checking in, with no expectations. You may say something that your loved one obviously finds offensive or hurtful. If they confront you about it, you might not Is everything okay? agree with their reaction because you know what your intent etc was. But at the end of the day, nobody wins in that situation. Apologizing to your friend affected by cancer or a caregiver is the best way to move Thinking about you... forward. Know that everyone can always do more to be more supportive to those affected by cancer. First of all –forgive yourself. Then just keep Hello... working at it and be consistent. Truly being there for someone you care about is often a trial-and-error process. Keep working at it. They need you, now and in the future, more than ever. If you care about someone, do not give up on them –no matter how hard it gets for you or how underappreciated you may feel. If they tell you that they need their space or that they don’t want to talk about it, then respect their wishes. But always remember that if you care about someone you can’t retreat when things get difficult. Because in some form or another, as a helpless friend who is trying to be supportive ... things WILL get difficult at times. MY FRIEND/LOVED ONE:

u– . I NEED yo e of my life times I might be ag st st e d ar h at ds, . Dear Frien through probably the . My filter is low, and that I don’t need to d I am going n’t say it or act like it If I apologize, tell me on, understanding anis even if I do ve or even ridiculous.ll I ask for is compassiart or how my body h unresponsi e you understand. Aows what is in my he me to share this wit n’t That tells m gement. No one kn e the energy all the ti thing out. Please do a bit of engartunately I don’t hav re this whole cancerse days, and I might if feeling, unfopatient as I try to figu different person the dship right now. But ly you. So be ” on me. I know I’m a y weight in the frien ing I will be eternal “disappear e strength to carry m – well, that is somethe more than you will not have th re for me during thisur gestures impact m you are the and never forget.Yo grateful for. d One ever know –Your Love

C.A.R.E. – 121

RELATIONSHIPS & SUPPORT: Focus on Friendships

Focus on Friendships

Having cancer or having a loved one with cancer affects Let your friends know at any your mind, spirit, and lifestyle. Spouses, children and given time if you prefer text families feel the waves of the diagnosis. Your relationships messages, emails, social media with your friends and/or co-workers can also be affected. or phone calls. Then, if you For some, cancer has and will only amplify the bonds and can, offer a basic overview appreciation for those in their life! Your friends and those of days, times and dates around you might overwhelm you with support. This is that are best or not ideal for definitely one of those positive takeaways (see pgs 59-60) communication. that some chalk up to the diagnosis. This section, however, is for those who might have concerns about certain friendships or have felt underwhelmed by the level of support they’ve received. There is no way to ensure that you won’t be disappointed or hurt by a friendship or dynamic. There are simply ways to help with efficacy and perspectives to not feel “kicked” while you are already down. YOU are not responsible for whether or not your friendships last through this time in your life. Tips or advice given here are all simply in the effort to “help you help others” to be there for you. These are some things people may say to you. It Let me know is common to simply smile, say “Thank you, I Know that if you need appreciate it,” and move on. Take the opportunity I’m here for anything! when you can (even if you aren’t asked) to express you! how you can be supported. Simply say, “Actually – you could help me with something ...”

From a Distance:

Locally:

r Stay on pulse and reach out to me more. r Tell me about your life and ask my advice. r Respond/answer my outreaches in a timely manner. r Give me some space and be patient for a while as I figure things out. r Set up a time to have a quality phone conversation or video call or come visit. r Reach out to me on days that you sense might be tough (certain appointments, holidays, anniversaries, etc.) r Send cards or notes periodically. r Text me jokes, mindless funny photos, etc r Start a GoFundMe/Meal Train/PayPal page to help with finances or food. r Keep other friends updated for me. r Stay engaged with me on social media. r Don’t depend on me for a while. r Talk to me and send me mindless things.

r Pick an item up from the store. r Drop off/pick up a prescription/mail r Take my child(ren) to school/practice. r Pick my child(ren) up from school/practice. r Help cook/pick up a meal. r Call a friend or relative for me. r Return text messages to people on my phone – I’ll tell you what to say. r Walk the dog – care for my pet. r Give me some space and be patient for a while as I figure things out. r Take trash out weekly. r Do laundry, dishes or any other housework. r Do yardwork or manual labor. r Don’t depend on me for a while. r Ask me for my advice, still depend on me. r Go through finances/paperwork/this website/ this magazine/book for me. r Accompany me to an appointment. r Simply hang out and act normal with me. r Set up a time to come visit me and possibly bring something to brighten my day.

Text “LIVING” to 70989 to download the brand new LivingWith free app that helps manage your requests for help from others. C.A.R.E. – 122

The “disconnect” YOU: They haven’’t really been there for me through this.

YOUR FRIEND: I totally have reached out a few times and am supporting them right now.

Sometimes the recipient feels neglected, whereas the friend feels completely satisfied with their efforts, and oblivous to how their actions (or lack thereof ) are affecting the other person. The discrepancy isn’t necesarily anyone’s fault. Oftentimes people offer and provide support in the form in which they would prefer to receive it–which isn’t always universal. If you don’t feel supported by someone, and it is hurting you, there are two options: If you tell someone that 1) Tell them you need them to be there for you more these days and they’ve hurt you, be prepared explain how they can make such an effort. for a response that might dissapoint you. Let how they 2) Let it go. react to your concerns guide Ultimately, what it comes down to is how much energy you want to the decisions you make about put into that friendship or person at this time. You must do whatever that friendship in the future. you have to in order to not let the situation weigh you down. Regardless of how close of friends you might be– cancer/caregiving can lead to very differing perspectives and impact your dynamic.

Recognize their hurt Just because they don’t reach out doesn’t mean they don’t care. They probably feel lost and don’t know what to do next. That, yes, is a lousy excuse for hurting you and this doesn’t make your feelings any less justifiable, nor does it excuse their actions – this might just be something to reflect on, if it helps you move forward. Although it may be difficult to be empathetic to others right now (for good reason – you are going through a lot) especially if you’ve been hurt by them in any way, it can be helpful reflect what they may be inferring from the situation. Recognize that if they are your close friend, they are probably grieivng the loss of your friendship, dynamic in a a way- Or if it is a loved one, they too probably have grief feelings about the diagnosis (see pages 126-130 on grief ).

The “disappearance” You may feel like you have lost many people in your life these days. It could be due to a variety of factors. None of them are excuses, but once recognized it migh help you to move on. ✔ They simply don’t know what to say or do.

✔ They are preoccupied (work, marriage, children, grandchildren, own responsibilities) in their own life. ✔ They assume you have enough support/what you need from others.

✔ They feel they have already done or said something wrong. ✔ They feel their level of engagement is sufficient. ✔ They feel their efforts aren’t appreciated or haven’t been acknowledged enough. ✔ They are stressed in their own personal life. ✔ They aren’t good with sickness, serious or mortality issues. ✔ Your situation reminds them of a personal one they have had, and it’s too hard.

C.A.R.E. – 123

If it would bring you peace to forgive their actions, then so be it. You aren’t expected to, but if YOU will feel better without that resentment – then consider it even if the friendship has now forever changed for you.

TYPES OF FRIENDS REASON - These are the individuals in your life who you feel have served a certain purpose.These friends taught you something or it was “meant to be” that you had that dynamic at that time together.

C N A GL A AT

SEASON – Friendships based on a “season” are typically due to compatible lifestyles, similar circumstances or a timeframe that made your dynamic together conducive to you both. LIFETIME – Lifetime friends are those that no matter the convenient reason or what you have in common anymore, that your dynamic stays the same or grows stronger. These are the friends that are permanent in your life and that you can count on now and in the future. There is nothing wrong with Reason or Season friends – for they served some purpose in your life, and you in theirs. Those that you thought were Lifetime friends, might have been there for a Season – and that’s okay. When it comes to your journey with cancer, just try to determine what “type” of friends you have, so as to not get disappointed by some, while you can have confidence leaning on others.

Try to

Try not to

Thank those who are there for you during this tough time. Letting them know the appreciation you have for them is a great and easy way to affirm their efforts and to keep a strong bond. Carefully assess who lifts you up and provides a positive relationship in your life right now. Be honest with those close to you who at this time, you want to maintain a strong relationship with. Be “relatively” responsive through an acknowledgement of a text, email or call. It can be as simple as “Hey, thank you for the outreach.”

Let yourself get consumed by one person or situation. Accept their actions without dwelling on them. You need all of the energy you have, and you can’t control others’ actions right now, you can only attempt to manage your reactions. Blame yourself if a friend distances themselves. They simply don’t understand. Take a negative experience with one individual out on another. Hold onto resentment – it is distracting and toxic. You, once again, will end up hurting.

Redirect your focus You are not expected to Some people in your life will come or be a huge support “coach” those close to you, on for you, while others who you expected to be how to be supportive. They overwhelemed by, just end up disappointing you. It might, however, make small happens. If you acknowledge those that have hurt efforts or gestures to help you, be sure to also recognize who have helped. It’s the only way ensure you get assistance and feel the love from them during not to add bitterness to your plethora of emotions. Regardless of this difficult time. why someone might “be there” for you or not if you feel hurt by their absence, do your best to refocus your energy on those who bring you solace and comfort. Disregard the others if need-be. Some people just might not be compatible during certain stages of life. This may change in the future – but for now, invest in those who make you feel best –because that is the a much better use of your energy. C.A.R.E. – 124

VOICES FROM EXPERIENCE – All my well-meaning and loving girlfriends often said things that I felt bordered on inappropriateness. Perhaps it was the fragility of my mental state, my overall crankiness ... I found myself not wishing to discuss my situation with anyone. I felt I perpetuated or invited negative energy, and that only a few people could still see ‘me’ in spite of the disease. – Some people don’t find it helpful to talk to people because they often don’t seem like they want to talk about it or divert conversation and that makes things worse.

– Let others help you. No matter your position or theirs – if they are willing, and you have a need, let them. – If you tell someone you haven’t felt their support and they genuinely apologize, accept it! – If a friend is overwhelming you and intruding on your space, time or privacy, ask a loved one to help serve as a “buffer” or intervene. But keep in mind, at least they are making an effort. – Put difficult friends/issues “on a shelf” until you are able to tackle them.

– I learned how mutual sharing of my feelings actually helped both of us.

– Say “I don’t find this conversation supportive right now” if you engage in a toxic dialogue.

– It’s time to become HUMBLE and let others help you. You won’t have the strength every day to handle things and aren’t expected to.

– Attempt to manage your expectations so as not to be disappointed.

– When I was first diagnosed, a fellow cancer survivor told me, “Call me when your friends get weird and desert you.” At first I didn’t understand – now I do. – It’s not your responsibility to protect others from your illness, discomfort, or awkwardness they may feel. It’s up to them to remedy that and make better efforts to be there for you. – Just because you or a loved one has cancer doesn’t mean you are a saint. So you can’t necessarily get away with being relentlessly rude or mean. You do merit a deeper empathy, compassion, patience and understanding from those who care about you, though.

– Don’t turn away offers! If someone asks to help, give them a task that best suits them. – It’s time to become humble and let those who offer, help you. – Show grace for people who don’t understand what you’re going through and don’t know how to act. Treat them the way you would hope to be treated in a circumstance that you can’t relate to. – Focus on those in your life who have been a blessing! They deserve your energy.

e a what w ly no iderong. We te lu o s b gw ve a g up omethin it: we ha and say o afraid to say s n you don’t brin you , d d a n e h ie a r F d e o s n g h e e s ’r W to e . e Dear g k w w and hen or sic st goin ad, you We’re ju g. We can’t relateyou’re hurt, sad talk about it. W you’re me ask you if t to a in t w o n th o d a n g e w in ar e don’t k . When w ve te know ou don’t really ha er, we assume y don’t respond, wyou’re just busy we should belie were c r if e u n o o a w l w y il h o d g n is n n k the c a w li ’t e e y you. reall essag e don ally fe a text m loed one are re you say “fine” w want to pry. We ch in supportingandle u h r ’t d u m n n to o a o o y d s g le r o e really uldn’t mess up ight not be ab y to be are doin how you ontinue to ask. W .I m ly tr we wo n e g your c th l probab from me r e o you becaus you need more lings are. We wile we’re minimizinase , s r e d a e fee el lik nt need – ple mindr aand tell me hat your ou to fe Call out least I’ll know wwe never want y hat you like, wa more than we it, but at, but know that ible you know wthink about you positive . If AT ALL posst a little bit. We you know... situationith us... even jus itely more than nds ie share w show, but defin -Your Fr ly b a b o r p C.A.R.E. – 125

RELATIONSHIPS & SUPPORT: Navigating Grief

Navigating Grief

Whether it be a shattered friendship, changes in a relationship, or a death of a loved one, many will experience a “loss” in their lifetime. During your cancer journey, amongst other changes, you might face times where you experience some kind of loss. All losses make you susceptible to experience grief, as each one is a void of some sort. GRIEF /’grēf/ noun 1 : deep and poignant distress caused by or as if by bereavement • his grief over his son’s death 2 : a cause of such suffering • life’s joys and griefs -merriam-webster.com

Grief is a word that embraces the various feelings and thoughts you might have about the loss you are dealing with. Grief can include pain, overwhelming sadness, despair, anger, relief, shame, guilt, joy, and fear-filled questions of how you will live now. It can initiated by a loss or change of life as you knew it to be.

Losses that may produce grief • Change in a friendship dynamic • Loss of a pet • Graduating • Transformed role or status • Altered autonomy/independence • Death of a loved one

• Loss of health • Departure from a job • A break-up/divorce • Relocation • Loss of trust or safety • Relocation

Oftentimes society sees grief as a negative instead of a valid emotion that becomes a part of our being. If others recognized some permanent sense of grief as your friends new 'normal,' rather than a transient period to be finalized, there would be more acceptance and understanding as a whole.

EILEEN JOYCE

GRIEF RECOVERY SPECIALIST GRIEF AND RECOVERY:

A Dose of Info

Loss of health is one of the major losses that often causes a person to grieve. With any serious illness the challenges can be overwhelming. In addition to the time, money, and energy expended, there’s the discomfort and pain involved in doctor’s appointments and treatments. Many disturbing fears can arise—fears of what will happen, of how to keep a job, of how to take care of your home, of who will take care of you if you get really sick. All this adds up to the loss of your routine, loss of security, loss of feeling good, loss of doing the things you love, loss of your happier self. Each loss adds to the conflicting emotions that make up grief.

from The Pros

To view a full Q & A with Eileen Joyce online: visit careguide.info Eileen Joyce, professional coach/grief recovery specialist 505-428-0670 ej@eileenjoyce.com C.A.R.E. – 126

Coping with the death of a loved one

Grief + Cancer When your life has been hit with cancer, your life has already been turned around. So, to add any additional extreme feelings may feel overwhelming. For your physical, mental and emotional health it’s important to address and recognize your grief in some way. For some, grief can start upon your/ someone’s diagnosis or it can come as a result of yet another life-altering event or circumstance.

Grief from the loss of a loved one is “mourning,” and entails large heartbreak. Be honest about how the death affects you. Recognize that some extra support from friends, family and professionals may be appropriate. The hardest part about losing someone is the fact that this isn’t just a chapter of your life, and they will walk in that door again. They won’t...and that’s one of the most difficult realities for people to face.

Misconceptions of grief

MYTH: Grief ends because “time heals all wounds.” In the beginning, your life may be all encompassed with the sadness. Your normal dayto-day life has to be completely adjusted to this disruption of pain. After a while you start learning what will make your grieving worse, and what can possibly make it lighter. However, in the trial-anderror of this process, what remains is the presence of grief, in various forms. Ultimately, time changes how one deals with a devastating loss; it is not what heals the broken heart.

has been altered by that You don’t shed the missing piece in your life. longing for your loved one, but you learn to MYTH: It’s best to have your pain co-exist never bring up the lost with your life. loved one to the griever. You will never “remind” someone of their loss. It’s something that they carry every day and when you say their name you will not all of a sudden make the griever realize who are gone. Oftentimes it’s refreshing for others to talk about your loved one. It keeps them alive and nice to know that someone else was either impacted by them or wants to learn about them. Disclaimer: The helpfulness of this will vary depending on the timing, cicumstance and dynamic you have with the person bringing up your loved one.

MYTH: It is a linear process. Grief comes in waves. Big waves, little waves, and capsizing waves. Every single day is completely different. You learn to identify your “triggers” and remedies to manage those emotions. There are some days that will completely knock you out, and others where you mange it better, but there is no start to finish component to it at all. There’s no timetable for this or ANYTHING in this process.

MYTH: Everyone who has lost someone follows the same patterns and needs the same things. Let coping be compared to exercising– where it is something that everyone choses to do differently in their own ways. Some might run, some might do fitness classes –there are plenty of ways to exercise. When it comes to grieving there, too, are different styles. Factors like upbringing, coping mechanisms, relationship with the lost loved one etc., all help to contribute to how someone deals with the loss. And just as some need to run with music, while others prefer to work out with a friend, the needs and desires of a griever vary from person-to-person. As long as it isn’t detrimential to your or the health of others (i.e. substance/any kind of abuse) there is no wrong way to grieve. There is simply YOUR way. Identify, embrace, and evolve that way.

MYTH: People will “go back” to who exactly who they were before the loss. Every person in your life is a part of your existence and so when we lose someone so close to you, it can feel like a part of you is now lost. Months will pass, years will pass, decades will pass and although surface level conditions might return to its original form, you, your heart, the fabric of who you are,

MYTH: You can control how sad you are. All grief comes like an uncontrollable wave, sometimes totally engulfing one, other times just a ripple—and everything in between. You can do things and mentally frame things in a more productive way but there’s a direct body and mind correlation that you can’t always control.

MYTH: There are distinct stages of grief. Grieving takes on new and unexpected forms over time. There are absolutely no stages. The stages people talk about are based on Elisabeth KublerRoss’s book on death and dying, but she explained later in her life that everyone experiences grief in their unique way and that the “stages” were completely misinterpreted by society.

C.A.R.E. – 127

“Secondary loss” The concept of secondary loss refers to the reality of subsequent losses to an original one. For example: after you lose a loved one, you might seemingly lose their side of the family, or lose a dynamic with friends, or you might even lose your environment/daily routine. It’s important to acknowledge these secondary losses one-at-a-time. It can be very aggressive all together. Whereas, there isn’t anything that can be done about the loss of your loved one, over time, and with reflection and action, you might be able to alleviate some of the stress and impact of these other losses in your life.

Life after caregiving Caring for a loved one during an illness or some kind of Although people might get condition is a very rewarding yet difficult role. Depending on back to ‘living their lives’ in the health and circumstances of who you are caring for, the whatever facet (going back to caregiving role could be all encompassing. As time progressed, work, hanging out with friends, being that person’s caregiver was what you identified yourself handling parental responsibilities, most as. And whereas at times being a caregiver was hard – laughing, excelling at work, in a that’s nothing compared to the emptiness that one feels after new relationship etc) doesn’t mean the loss. So when a caregiver loses a loved one, it’s important they are not grieving. for them and those around them to recognize that it isn’t only a person they are grieving, but also a responsibility... a lifestyle... a purpose. Former caregivers should be patient with themselves as they navigate a new day to day and, in some ways, a new sense of identity and selfworth.Healing your broken heart must come before you can truly recover your energy and desire to find a renewed purpose in living.

BEING THERE FOR SOMEONE

NC A L G A

We aren’t taught how to deal with someone AT who’s grieving. Because we don’t know what to – Don’t ever give say, our typical response is to give advice, which up on them just is a mental response to an emotional issue. It because they doesn’t help the grieving person. Realize that can’t properly there is nothing that can be said to heal someexpress or explain one’s grief. What people ultimately need are to you exactly how people who are willing to listen and accept what they are feeling or what is they are saying without correcting or perceived needed. Be proactive and judgement. consistent with your efforts.

*See pg 116-121 for some ways that can help a griever too and visit careguidegrieving for a – Be there for them. Regardless of how uncom- more comprehensive list/explanation of how fortable it may be. Acknowledge their loss and you can supportive to a grieving friend. express your sympathy in a genuine way. Let them know you don’t understand but that Don’t rely on social media you are (still) sorry for the loss in their life or third party sources to get and that you are interested in how they are a grasp on how someone is doing through this. It’s a simple thing to say, and doing. All can be deceiving makes a difference to the griever. and don’t/cant’ reflect your friend’s thoughts and feel– Keep reaching out after time passes. Your loved ings. If you want a credible one or friend definitely is not “okay” or “over source... reach out to your it” under any specific timeline. friend directly. OVERALL:

– Be patient. Everyday is a different experience and many days they don’t feel like themselves so bear with them as they travel this journey. Forgive them for not seeming like they used to. C.A.R.E. – 128

Options for support SANTA FE OFFERS MANY SUPPORT GROUPS FOR THOSE COPING WITH A LOSSS. VISIT CAREGUIDEGRIEVING.ORG TO SEE THE FULL LIST OF LOCAL GRIEF RESOURCES There is no start date and AVAILABLE TO YOU. ONLINE COMMUNITY SUPPORT Griefshare.org | Refugeingrief.com | widowedvillage.org childrensgrief.org, hellogrief.org

end date to grief. Give yourself time to heal and be patient with that process. There are people who struggle with similar situations, and resources in place to help bring comfort.

READING/LISTENING MATERIAL

“Option B” by Sheryl Sandberg

“It’s Okay to Laugh” by Nora McInerny Purmort

“It’s Okay to Not Be Okay” by Megan Devine

In My Shoes...

What’s Your Grief? podcast

In My Shoes...

“Running laps”

Lynn

“My father was a 40 year cancer survivor, and he truly was and is my inspiration for coninuing to have a team every year. I’ve participated for 19 years (two with my dad and 17 as a team captain) and raised more than $92,000 for the cause. My comfort after his passing, comes from participating in Relay for Life year after year. Making a difference in this way means a lot to me.” To read more online about Lynn’s story, visit careguide.info

As grievers Grieving and mourning is like jogging on an outside track. Sometimes you feel in stride and other times you don’t think you have enough energy to make that turn. When you started running you had many supporters there to cheer you on... but as time goes on the crowd may scatter a bit – yet you’re still there, running in circles. The more you run, the more you get the hang of the track and wear in your shoes a bit... but the exhaustion is still there and very real. Many people will say processes like grief are “marathons not sprints.” Well, grief is actually neither. Those both have distinct finish lines. What is left after the first lap, or even, the first mile? Well, another lap. Another mile when it comes to mourning the loss of a loved one, there is another holiday... another year without them. All you can do is continuously take and use those lessons you’ve learned from yourself and continue to do the best you can to navigate the future “laps” of grief.

C.A.R.E. – 129

In M

VOICES FROM EXPERIENCE “HOW & WHAT HELPS ME GRIEVE” – Talking with others about them

– I try to live my life using the values she taught me

– Talking to my loved one still – out loud even.

– I stay busy – work helped/I took some time off of work

– Listening to their voicemails, messages reading their sent text messages and handwritten letters

– it wasn’t helpful.

– Crying/Not crying

– I connect with people that remind me of my loved one or was a mutual friend – I watch certain movies/listen to certain music/eat certain things that remind me of them

– Reading books about losing someone/the afterlife – Praying/meditating/going to mass/church – Going to grief counseling/therapy/support groups/Grief Share/a children’s camp – Volunteering for or organizing an event in their honor – Just hugging someone, not saying anything – Looking at pictures of them/Not looking at pictures of them – Medical care for anxiety, depression and panic attacks

– I keep their belongings close and wear their clothes – I post about them on social media. It’s important to me to remind people about how amazing of a person they were – Support from my family and friends have really helped me get through this. – Those that let me talk about my loved one, without diverting conversation or getting awkward is refreshing.

– Therapy helped me emotionally and mentally. Kickboxing helped me physically.

– Talking to those who have experienced a deep loss

– I started a memorial scholarship in their name

– Investing in my mom

– We hold an annual memorial golf tournament to bring friends and family together around the time of the anniversary of their death. – I got a tattoo that reminded me of them. – Remembering that I told my mother I loved her every single day and I do not regret anything – I dedicate each and every run to my dad– he loved to run and go to the mountains and hike empty trails – I visit my husband’s grave site and take him flowers – I’m opened up my own Barre Code studio – that’s where I feel the most connected to my mom. – I took my dad’s bucket list and am working alone to accomplish them for him. I figure, since he’s always “with” me, if I’m there, he’s “there” and thus doing the things he wanted to do. – I look at the reminders of her in my home i.e. her paintings and gifts.

– Writing down memories we had together – Being around others. – Being alone. – Processing it and not putting it away for a more appropriate time. – Maintaining old and new traditions – Thinking about and being thankful for the life, children and home we built together in our nearly 40 years of marriage helps to reflect on when I miss him so much. – Establishing a special section of books in her honor at the grade school library that she taught at – Reminding myself that they aren’t in pain or hurting anymore –My faith and prayer helps me get through – I wrote a magazine about cancer, trying to help those diagnosed and their loved ones feel understood in my father’s name.

– Knowing that they are always with me... brings me comfort.

READ PERSONAL TESTIMONIES/INTERVIEWS FROM GRIEVERS + SHARE YOUR THOUGHTS ON GRIEF AND STORY AT: CAREGUIDEGRIEVING.ORG

C.A.R.E. – 130

Much like treatment provides physical side effects – cancer can provide financial side effects as well. Learn as much as you can about cancer, your treatment and its costs before starting treatment. Don’t wait until you have financial problems to discuss costs with your cancer care team and support system.

Common Costs • Doctor visits • Lab tests • Treatments • Imaging tests & scans • Medication • Hospital stays • Home care • Medical supplies • Home care • Bloodwork & hydrations • Procedures • Gas to appointments

Even though you may have managed your finances without help before, you may not have the energy to deal with new money issues now. It’s wise to ask a friend or family member to keep track of costs, go with you to doctor visits and help with these discussions. Sharing this information is a sign of strength and can go a long way in alleviating financial strains.

Your Body and Your Bank Your health situation on top of financial woes can be a lot to handle. To reduce your stress have someone help you accomplish these productive tasks:

R Add up monthly payments to hospitals, clinics, doctors, radiologists and others involved in your treatment.

R Note how each of these bills is paid —

online or by mail — and when the bills are due.

R List the contact information for the

billing person or department for each of these bills.

R Write down the last four digits of

your Social Security number and your birthdate, as these are often required when you contact billing departments.

R Write down the debit or credit card

number used for payment, as well as the PIN number that goes along with it. Make sure that a family member or trusted friend knows where the debit/ credit cards are kept in case they need to access them when you cannot do so.

R List any public or private financial help you are getting, along with contact names and phone numbers.

R Finally, review your monthly budget to see where you are on track and where you need to make adjustments. Average Monthly Out-of-Pocket Spending for Cancer Patients:

$316 - $741 Risk of Bankruptcy

2.65x Higher

Among Cancer Survivors From: Financial Hardships Experienced by Cancer Survivors: A Systematic Review J Natl Cancer Inst. 2016;109(2). doi:10.1093/jnci/ djw205 C.A.R.E. – 131

PRACTICAL ITEMS: Cancer Costs

Cancer Costs

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C.A.R.E. – 132

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C.A.R.E. â&#x20AC;&#x201C; 133

Staying on track Setting aside a few hours a week to review your bills and financial status will give you a realistic picture of your situation and help keep stress at bay. If you can do this with the help of a trusted family member, friend or counselor, it will be a much easier process.

STATEMENTS VS BILLS

Statements and bills are TWO DIFFERENT THINGS – but remember that statements eventually turn into bills. Put all financial information in one folder. Get organized and review both with a caregiver, friend, loved one or support such as a social work, patient navigator or counselor. Bills can be paid in different ways. So when you are reviewing your finances with your loved ones, be sure and specify how exactly your expenses are taken care of. Money management can be stressful all in itself. Adding cancer to the situation understandably might be overwhelming. Be patient with yourself and USE THOSE around you to work it out with you.

What is “financial toxicity?” “Financial toxicity” is a term used to describe the financial implications of cancer. If the following questions can be answered with a “yes” then you are among the many people who suffer from financial toxicity. Have you, or has anyone in your family, had to borrow money or go into debt because of your cancer, its treatment, or the lating effects of that treatment? Did you or your family ever file for bankruptcy because of your cancer, its treatment, or the lasting effects of that treatment? Have you or your family had to make any other kinds of financial scrifices because of your cancer, its treatment, or the lasting effects of that treatment? Have you been unable to cover your share of the cost of your medical fisits for cancer, its treatment or the lasting effects of that treatment?

A AT HELP NCE A L WITH G MONEY THROUGH CROWDFUNDING

Sometimes when there are financial struggles during a diagnosis or treatment, family or friends solicit assistance from those they know via networks like GoFundMe.com, Pay Pal, or through email/Faebook groups. Speak with your loved ones if this is an option you’d like to explore. There isn’t any shame in seeking financial assistance in a public way. It not only serves a very practical and helpuf form of support for you, but it also makes others feel like they are contributiong to your well-being, in such a helpless situation.

Financial Hardships Experienced by Cancer Survivors: A systematic Reveiw, National Cancer Institute; Ramsey, Health Affairs, 2012 C.A.R.E. – 134

Take action Once you have a general picture of what your treatments will cost, ask yourself these questions: What public resources can I pursue? What private financial assistance is availabee to me?

PUBLIC RESOURCES

If you are not employed, contact: Social Security Administration 800-772-1213 | SSA.gov

If you feel uncomfortable or insecure discussing financial struggles or information with your family and /or friends know that you don’t have to deal with this alone– talk in confidence to a local social worker.

Centers for Medicare and Medicaid Services provide information about patient rights, prescription drugs and health insurance. Contact 800-MEDICARE | medicare.gov

PRIVATE RESOURCES

See pgs 68-71 for financial assistance for New Mexicans with cancer. Question yourself on your spending habits. Ask yourself; where can I cut back expenses, and what other changes can I make so my money lasts through my treatment? Take the time now to set up a realistic monthly budget, looking at all your fixed costs such as housing and car payments, as well as your income and personal expenses. This will give you a good starting point to see the big financial picture.

C.A.R.E. – 135

PRACTICAL ITEMS: Cancer + Career

Cancer + Career

Managing cancer can feel like a full-time “job” all in itself. Add an actual job and career into the mix and there may be some increased challenges to navigate through. It may seem like an impossibility to focus on your health, when you need to work to pay for it all. Sometimes it may feel like a vicious cycle. If you are working through cancer, you need to clearly ask for what you need from your employer and co-workers, and remember that your top “job” is your own well-being. Cancer is a very personal disease and can be handled however you want. Coworkers only need to know what you want them to. Just because you work with them doesn’t mean you owe them any personal information, updates on your health, or even your feelings.

Reflection of your role Try to process the presence of your job in your life and determine your needs when it comes to treatment and your career: I. Tell your doctor exactly what your job is and any unique circumstances you’ll be coping with. II. Let your doctor know that it’s important to you to make decisions that are good for your health and your job whenever possible.

You may find duties you used to tackle easily take more effort and energy nowadays. Be patient with yourself. You are doing the best you can. Take it one hour at a time.

III. Ask for general ideas of how your diagnosis, medication or treatment could affect your job. IV. See if you can be flexible with the time you take your medications in order to minimize any side effects at work. – i.e., oral chemotherapy and other options that might be less disruptive to your work schedule.

Items to keep at work A notebook to jot your impressions, notes, questions for the doctor, etc. Digital recorder or tape recorder Post-It notes or flags to highlight important pages in documents Pens, pencils and highlighters to help remember important items

Reasons people will work through cancer – Health insurance comes with the job. – The income to financially support them/their family is needed. – Their life insurance will be higher for their spouse if they remain employed. – They really enjoy their job.

– They get a sense of fulfillment and normalcy in working. – The job helps people feel purposeful and like they making a difference. – They have people counting on and depending on them at work. – Working helps them to stay busy and active.

C.A.R.E. – 136

THE LAW

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FAMILY AND MEDICAL LEAVE ACT (FMLA) Depending on the location, FMLA may protect your job and benefits for unpaid absences up to 12 weeks (and it doesn’t have to be used all in a row). • Complete paperwork from your company’s HR department to become eligible. • If FMLA has been exhausted, look into long-term disability coverage.

Your employer SHOULD have knowledge on this act. If in acutality they aren’t that helpful, know that you should take matters into your own hands and work with a social worker yourself. AMERICANS WITH DISABILITIES ACT (ADA) In most cases, companies that have 15-plus employees are required to make reasonable accommodations to help Using PTO (vacation/ you do your work by allowing time off for appointments or allowing flexibility with your schedule. Opting into disability plans usually leave/sick days)during FMLA absences are the can only happen during health insurance Open Enrollment Periods only way to get paid, but (dates dependent on place of employment). the job is secured under law for both the one with IT IS ILLEGAL FOR COMPANIES TO TERMINATE AN cancer or their caregiver. EMPLOYEE FOR HAVING AN ILLNESS AS LONG AS THEY ARE STILL ABLE TO DO THEIR JOB. If you feel an injustice in the workplace has occurred, file a complaint with the Equal Employment Opportunity Commission (EEOC). If you neelp applying for Social Security Disability, use NM’s LIPA program – see pg 143

An HR Checklist Use the following checklist to either find out on your own, or discuss with your HR Department (if trusted). Everybody’s job situation is different. The best way R Have I been paying into any disability plans (short term/long term/ to know your options social security)? and benefits are to discuss R What is the percentage of my disability plans (if applicable) them with your HR R How much vacation/personal days/sick days do I have? department and/or trusted R Is it possible to work remotely? supervisor. R What are the part-time vs full-time options? R Does the company have a PTO pool where vaction and sick hours are able to get donated from co-workers?

Make Work...WORK If you plan to continue working while undergoing treatment, you can make the process easier for yourself – as well as for your employer and co-workers. MAP OUT YOUR WORK WEEK Keep careful notes about the way you feel throughout each day and week to reveal important patterns about the effects of your treatments and medications. If your hours are flexible, work during as many of your peak-performance hours as possible. You can also schedule important meetings and presentations for the mornings or afternoons when you know you’re likely to feel your best. If you are strategic then you just might minimize chances of a health/ work conflict. Tell your boss,“I may need a limited/flexible schedule,” Then give the amount of information you feel comfortable with. FIND OPTIMAL TIMES FOR TREATMENTS Reviewing your to-do list and obligations can help you determine whether it makes sense to schedule doctor appointments before work, during your lunch hour or at the end of the day. If you feel exhausted three or four hours after treatments, for example, schedule 2 p.m. appointments, so you’ll be off work when that fatigue hits. Or if your body needs a few days to recover from treatment, try to schedule sessions for Friday afternoons. C.A.R.E. – 137

In My Shoes...

Jodi

PUTTING THINGS IN PERSPECTIVE Cancer is a wakeup call to how short and fragile life is. It has changed my priorities, helped me define what is important in life and how I want to spend the time I have left above ground. ADJUSTING THE OCCUPATION I made a career change. I no longer want, desire or need to climb the corporate ladder. A work life balance is more important to me than a high-powered job with a big salary and all of the responsibilities associated with it. My personal time is valuable to me and how I spend it matters. I need time to eat, sleep, exercise and pursue personal interests/ passions and spend time with my family, friends and walk my dogs. AS AN ADVOCATE I’m a breast cancer advocate because, I lived, when others died. I won my battle and I am a survivor. I feel a personal responsibility to help raise money and awareness because, early detection saves lives. I’m here because my cancer diagnosis was caught early. The more we can diagnosis cancer early, the move lives we can save. Early detection saved my life. It’s important to me to raise money and awareness because it may save a life. If nothing else, it might provide comfort, hope and inspiration to know that someone cares and they are not alone. To read more online about Jodi and her full story, visit careguide.info

Dress for the Occasion To decrease the time and energy you spend on your clothes, create a work uniform. Find a basic “look” that suits your needs both professionally and physically. You have enough to deal with; your wardrobe is not something that you need to stress about.

These two letters do not make a curse word in the office. In fact, sometimes it is necessary to say “no” and set limitations at work. Everyone has limits and it is important to take the time to figure out what yours are and what triggers them. In personal lives, it may be easy to tell someone that space is needed or you prefer to be left alone. However, work culture often makes that hard to do, making it critical to find productive ways to communicate your limits. Learning to set these boundaries on the job might enable you to decline certain types Determine what projects of requests, such as staying late for non-essential tasks or you can make portable– accepting new projects to complete. and work on in waiting rooms of appointments Although it can be difficult to say “no”, figuring out how to do that – and take a few days off can help you become a better employee; you won’t be overburdened if you ever need to regain with extra work and you won’t feel trapped by every task you receive. your strength. The key to setting effective boundaries in the workplace is crafting language that feels natural and communicates the “no” message in a way that is still professional and team oriented. C.A.R.E. – 138

ON YOUR RESUME: LAB OR MILITARY SERVICE

Veterans who were exposed to agent orange or other herbicides during military service may be eligible for a variety of va benefits, including disability compensation for diseases associated with exposure. Your dependents and survivors also may be eligible for benefits.

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Diseases and conditions could agent orange potentially be related to: • Chronic b-cell leukemias • Multiple myeloma • Non-hodgkin’s lymphoma • Peripheral neuropathy, early-onset • Prostate cancer • Respiratory cancers (lung, bronchus, larynx, trachea) • Soft-tissue sarcoma (other than osteosarcoma, chondrosarcoma, kaposi’s sarcoma, or mesothelioma) military.com/benefits/veterans-health-care/agent-orange.html New Mexico Department of Veterans Service | 406 Don Gaspar, Santa Fe | 505-827-6352 EEOICPA = Energy Employees Occupational Illness Compensation Program Act. The program was enacted by the U.S. Government in 2001 as a way to provide monetary compensation and medical benefits to former nuclear and uranium workers who developed an illness as a result of working at certain Department of Energy facilities where they were exposed to radiation and toxic substances. Most of the facilities dealt with either uranium or nuclear weapons manufacturing. EEOICPA makes it possible for qualifying workers to receive free medical care for conditions caused by working at a facility covered under this program, during a specified time period “How to Apply and Maximize Your EEOICPA Benefits.” Cold War Patriots coldwarpatriots.org | 1-888-903.8989 Call 505-913-5731 regarding any questions and/or to schedule an appointment.

Winning in the Workplace • COMMUNICATE REGULARLY with supervisors and co-workers to let them know how you intend to stay on top of your work responsibilities. • INITIATE REGULAR MEETINGS with supervisors – and colleagues, if appropriate – to review expectations Pick one person at work that you can confide in and let them know what and productivity. you want them to tell people when/ • INFORM SUPERVISORS and co-workers if there’s if they ask about you. Ensure they are any change in your condition or treatment that will communicating exactly what you want affect your performance. If you need to take time them to and request that they tell you off, stay in touch with one or two people by phone who asks for you because if they don’t or e-mail to keep your lines of communication open during your absence. you can feel like people don’t care when they might just be asking someone else. • DEFLECT UNWANTED CONVERSATIONS if someone asks, “How are you feeling?” or, “You’re back!” by saying, “It feels good to be here” [then ask/ bring up something work-related, to get the attention back to something professional]. • ASK FOR HELP, if you need it. It doesn’t convey weakness. It shows that you’re invested in ensuring the best outcome for any given project. C.A.R.E. – 139

Dear Boss, I appreciate that you thought of me for this project but I’m a bit swamped this week and am concerned about my ability to get this back to you in a timely manner.” “Thank you for offering me these additional shifts. Unfortunately, I’m short on time at the moment as I’ve got some family obligations to attend to. But I’d love to talk about this possibly again in a few months, once the situation at home has settled down.

It is rare to feel comfortable and confident in the logistics, details, and information regarding employment and cancer. Know that you are NOT alone in any frustrations or confusing feelings you may have trying to sort everything out.

CO-WORKER SUPPORT Many have found those they work with to be large support for them during their cancer journey. Sometimes the people you see most are the people that you work with and so it is important that there is a healthy dynamic there.

NC A L G A AT

Sometimes, however, a lack of knowledge of your situation and education in general make well-intentioned co-workers come off extremely insensitive if they don’t know what to say. Ultimately, you only need to confide in those around you that you feel the most comfortable with. If they are helpful then utilize them. If not then go ahead and take care of business per usual.

When Career and Cancer Collide Friends and family members might have their opinion as to whether someone should or shouldn’t be working. Only the one with cancer can make that decision. Be For more support in sure that your pride is put aside and understand your limitations. identifying what triggers Deciding to take an indefinite break for something you have worked your limits, consider so hard for, will understandably affect you. That’s okay. Just know talking to a social worker that sometimes working and your health just aren’t compatible. Live or palliative care specialist life to the fullest. who can help you craft personalized language to There might be a time where your job doesn’t fit into your healthcare communicate your needs anymore and for one reason or another your focus can no longer at work. be split between the two. It’s important to always remember, but especially if a resignation is involved, that your job doesn’t define you. If you aren’t able to work a part of you might feel lost, but try to remember that your occupation (just like the cancer) isn’t your identity. Take care of you first. That is and will always be your most important job. C.A.R.E. – 140

Many people living with cancer feel overwhelmed with the complex rules about paying for treatments and the role health insurance plays. Since knowlege is power, try to get familar with these related terms to help in your dialogues about your health insurance:

PREMIUMS The amount that must be paid for your health insurance or plan. You and/or your employer usually pay it monthly, quarterly, or yearly. It is not included in your deductible, your copayment or your coinsurance. If you don’t pay your premium, you could lose your coverage. COPAYMENT (copay) is an amount you may be required to pay as your share of the cost for a medical service or supply, like a doctor’s visit, hospital outpatient visit or prescription drug. A copayment is usually a set amount rather than a percentage. DEDUCTIBLE is the amount you owe for healthcare services your health insurance or plan covers before your health insurance or plan begins to pay. COINSURANCE is your share of the costs of a covered health care service, calculated as a percentage of the allowed amount for the service.You pay coinsurance plus any deductibles you owe. IN NETWORK These providers are considered covered by your health insurance. They may also be called “preferred or participating-providers.” For more terms to know visit: hhs.gov

OUT OF NETWORK May cost more to see a practitioner. OUT-OF-POCKET MAXIMUM is the most you pay during a policy period (usually one year) before your health insurance or plan starts to pay 100 percent for covered essential health benefits. This limit includes deductibles, co-insurance, copayments, or similar charges and any other expenditure required of an individual for a qualified medical expense. This limit does not have to include premiums or spending for nonessential health benefits. EXPLANATION OF BENEFITS (OR EOB) is a summary of healthcare charges that your health plan sends you after you see a provider or get a service. It Bring a trusted friend or family member is not a bill. It is with you to meetings, a record of the or put them on healthcare you speaker (three- way or individuals calling) so that you covered on have someone to your policy got help you process the and how much information. your provider is charging your health plan.

Questions to ask It’s a good idea to make an appointment to talk with your medical team’s billing office so you can get answers to these questions: R W ill my insurance cover my treatment and

or surgeries?

R Does my health insurance company need

to approve the treatment plan before I begin treatment?

R A re my medications on my health

insurance plan’s preferred drug list?

R W hat is my prescription copay for each

R Is the treatment facility you are recom-

mending in my insurance plan’s network?

R How much will my out-of-pocket cost be? R What if I can’t afford the out-of-pocket

cost?

R Will I be turned down for treatment?

medication?

R W ill I be billed separately for laboratory

tests, such as blood tests? Are they covered under my health insurance?

R Do you offer any payment plans?

C.A.R.E. – 141

PRACTICAL ITEMS: Handling Health Insurance

Handling Health Insurance

Documents to keep track of • Copies of medical records • Prescription information • Income-related records • Disability insurance • Long-term care insurance

Networks can change. Check with your provider and call your insurance company each time you make an appointment, and to match up treatment dates with insurance bills.

• Pensions • Social Security information • Bank statements • Will and Advanced Directive • Veteran benefits (if applicable) Contact va.gov or 1-877-222-VETS (8387) to check VA healthcare eligibility requirements

LET’S GET LEGAL

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A AT It is against the law to discriminate against workers who have disabilities such as cancer. The national laws, The Federal Rehabilitation Act of 1973 and The Americans With Disabilities Act of 1990 protect your rights as a worker. Still, you may face challenges at work if you need to take time off for treatment. When you need legal advice, you have options – and almost all of them are *FREE*.

NEW MEXICO LEGAL AID This program provides free legal help and advice for New Mexico residents age 54 and younger. 901 West Alameda St., Suite 20-B 87501 | 982-9886 | 866-416-1934 NEW MEXICO BAR ASSOCIATION The Legal Resources for the Elderly Program is a free, statewide helpline for New Mexico residents age 55+. LREP staff attorneys provide legal advice and brief services in most areas of civil law (Spanish-speaking attorneys available). The bar association also can set up a 30-minute case assessment appointment with a private attorney for $35. The LIPA program also works with the bar association, and may be able to arrange fee dismissal. In addition, the NM Bar Association holds free legal workshops to learn about powers of attorney, advanced care directives, estate planning, long-term care and Medicaid planning. |nmbar.org | 505-797-6005 or 800-876-6657 NATIONAL CANCER LEGAL RESOURCE CENTER This California program is staffed by attorneys and paralegals who provide free legal assistance tailored to your geographic location | 866-843-2572 TO GET CONNECTED TO INSURANCE CASE MANAGERS: Karen Gano, LCSW, Social Worker, CHRISTUS St. Vincent Oncology | 505.913.5731 | Karen.gano@stvin.org Stephanie Michnovicz, Program Manager, Cancer Services of New Mexico | 888-668-2766 C.A.R.E. – 142

STEPHANIE MICHNOVICZ PROGRAM MANAGER

A Dose of Info

T I am in my 12th year as Program Manager of the “LIPA” program (Legal, Insurance & Paperwork Assistance). LIPA is here to help cancer patients and their loved ones, navigate through the many non-medical issues that arise from a cancer diagnosis; to find solutions to help relieve some of the burden that cancer brings upon one. Quite often I am contacted by a family member or friend, seeking advice for their loved one. It’s not unusual that the patient is so overwhelmed that, making a call for assistance is the last thing they want to do. I might first connect the family to support (telephone or support groups – whichever works best for their need) – perhaps making an appointment for us to speak via a conference calling network that we can provide. This way we are able to involve that family that isn’t local, via the phone. I’m passionate about what I do – and the patients that I work with know this – and in that way I am happy that I can offer some solace as it is, in these difficult situations that cancer patients are in. It’s not necessarily a “one-time” call – and in some cases, I’ve continued to navigate off and on, for years with the same patient, as new issues arise. I encourage anyone who isn’t finding help/assistance elsewhere, to contact me and the LIPA program so that we might see what we can do for you!

from The Pros

Contact: nmcancerhelp.org | Stephanie Michnovicz, Program Manager, 1-888-668-2766

Free Legal, Insurance and Paperwork Assistance (LIPA) Cancer Services of NM’s Patient Navigation LIPA Program can assist patients and their families with a wide range of support services. Whether you need help with insurance-related issues or guidance/ referrals concerning other nonmedical issues, CSNM is there to help. LIPA Clinics Free clinics are held the first and third Thursday of each month in Albuquerque. Volunteers with expertise in insurance, medical coverage, disability, legal, financial and paperwork issues are available for personal consultations in person or by phone. LIPA Referral Program This provides referrals to a variety of other groups that assist cancer patients and their loved ones with LIPA-related issues.

nmcancerhelp.org

This provides links to a wealth of resources to help with legal, insurance and financial issues. Call your insurance company’s customer service number and ask to be assigned a case manager to help coordinate/understand your healthcare costs. TO BECOME FAMILIAR WITH INSURANCE PLANS: bewellnm.com and nmcancerhelp.org FOR INFORMATION ON: Pre-existing conditions | Preventative care coverage healthcare.gov | hhs.gov C.A.R.E. – 143

PRACTICAL ITEMS: Planning Through the Pain

Planning Through the Pain One of the many fears that comes with cancer is the loss of control over other aspects of life. Planning out preferences and outlining wishes is one way for someone to feel that they are in the driver’s seat. This has nothing to do with cancer. It has everything to do with taking care of business for loved ones and for YOU. Ultimately, everyone deserves to see their wishes carried out whenever that day may be. Give yourself this chance to have things the way you’d want. Why? Because you deserve it. These type of iscussions should occur with your loved ones, and can be during routine visits with your healthcare team. Get aid from an estate-planning accountant and lawyer as well.

ATTORNEYS-AT-LAW

A Dose of Info

POWER OF ATTORNEY This is a legal document that allows you to choose a person to take care of important matters for you — for example, paying bills, managing investments and directing your medical care — if you are unable to do so yourself. LIVING WILL This is a legal document that spells out what you want to happen if you are terminally ill and can’t speak for yourself. It states whether or not you would accept artificial life-prolonging treatments. It also names a specific person to speak to the medical team on your behalf to make sure your wishes are carried out. This person is often called your “agent.” Remember to discuss your wishes with that person and make sure he or she is comfortable with the job. STANDARD WRITTEN WILL This spells out how your belongings will be distributed after your death and names a person to be the executor of the Will to make sure that your wishes are carried out. This outlines beneficiaries– those who will obtain your estate, possesssions, etc. There are also many smaller decisions that a person can make in advance if they want to.

Be sure to have all of your estate planning documents in place and prepared by an attorney (to from ensure validity under state law), The Pros including: R Will R Power of Attorney R Advance Health Care Directive R Authorization for Use and Disclosure of Protected health information When meeting with your attorney, take the following with you: R Information on assets R Person(s) you wish to benefit R Person(s) you wish to identify as your personal representative, trustee and agent R Copies of any estate-planning documents, prenuptial agreements and relevant court orders Be sure to keep all your important papers such as personal records, financial records and legal documents in one place and tell a trusted family member or friend where they are or ask a lawyer for help. Involving a lawyer to help you put your end-of-life wishes in writing can help you to clearly communicate what you want so that the chance of misinterpretation later is minimized. A well-written will or trust is critical to proper estate planning. It gives the person control over who receives his or her assets, prevents delays and unnecessary financial costs that may be caused if there is no will and provides a vehicle for clearly expressing other PATRICK PATRICIA JOHN F. end-of-life wishes. ORTIZ SALAZAR IVES McCARTHY JR. Santa Fe: (505) 988.4476 Albuquerque: (505) 888-1335

C.A.R.E. – 144

BREAKING THINGS DOWN If you don’t have a power of attorney, living will or standard written will documents in place, and have no identified “agent” a doctor is legally bound to go to these individuals, in this order, for decisions: 1) Spouse 2) Domestic partner 3) Adult sons and daughters 4) Brothers and sisters 5) Grandparents 6) An adult friend who is familiar with your wishes

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To prevent additional stress for your spouse, domestic partner, family member, etc, ensure that the following are in BOTH of your names: • House/mortgage • Vehicles • Phone service DNR – ”Do not resuscitate”– • Security/alarm services • Utilities is an important topic to discuss • Retirement • Insurance with your palliative care doctor, social worker, and family so Log-ins & Passwords: that your preference can be documented and understood. Write down in a safe place all log-ins to bills, emails, Ask questions about all of the passwords to electronic bill pay, etc. Note the frequency of different levels in this. payment and the form of debit (automatic payment, check, etc). This will help ensure that important payments are never missed and vital information will always be easily accessible.

We are Here to Help You Plan Thoughtfully by Providing You with Professional Legal Guidance Proud supporters of our community!

CUDDY CUDDY & & McCARTHY, McCARTHY, LLP LLP Attorneys Attorneys at at Law Law 1701 Old Pecos Trail Santa Fe, New Mexico 87505 (505) 988-4476

201 Third Street NW, Suite 1300 Albuquerque NM 87102 (505) 888-1335 C.A.R.E. – 145

Let’s Be Honest... These conversations are not exactly what one would describe as “fun.” These topics are tough, that’s understandable. The concept of mortality is not something that humanity is too comfortable with. Many people feel unsettled talking about advanced care planning or end-of-life planning because it reminds them or manifests a fear of losing someone they care about. The truth is that no one has a “crystal ball” and therefore cannot determine anything about the future. Mortality is oftentimes a large thought and concern to many, especially when a serious illness is concerned. With that, the sooner these crucial conversations take place, the sooner you and others can move on in comfort, knowing things are handled. It’s not about having an “end of life” talk, it’s about learning what will make your loved one most comfortable on their path. “I want you to know that I care about you and want to make sure that everything you want is carried out. Know that I know it may be hard, but that I’d like to discuss this with you when you are ready. How and when would you prefer to talk about this stuff?”

YOU

“I know it won’t be easy for either of us. But I would really like to share with you my preferences for the future. I don’t want to keep you guessing on answers I can provide you with now. Are you comfortable with that? May I discuss this with you sometime soon?”

FAMILY MEMBER/ FRIEND

The “Right Time” Everyone, with a serious health condition or not, should have these items in order. It is so important for people with a life-threatening illness and their family and caregivers to be able to talk about their fears, challenges, and hopes and dreams. It’s not always about holding out hope for an unlikely cure, but instead creating days of purpose and meaning. You may have a friend or family member who can listen without giving unsolicited advice. Sometimes the best medicine is just being safe to say what you are hoping for and what you are thinking and feeling without being judged. There won’t ever feel like “the right time” to take care of this. Try to tackle these difficult conversations with loved ones: 1) In a casual environment where you can think clearly. Steer clear of hospital beds or days where illness is heavy for these chats. If family members aren’t 2) While you have energy, strength and feel healthy. cooperative in your planning objectives, find a different 3) In stages. No one says you have to handle all of these important topics in one sitting. Break it up and discuss family member, close friend and things in bits and pieces so that it seems less overwhelming. professional to discuss it with you. FIND SOMEONE to help 4) Then reward yourself and your loved one after you you document, get and give the accomplish something. You just finalized your DNR answers you need. paperwork? Great – go treat yourself! You just told your child your ideal preferences for services? Fantastic – next, listen to your favorite songs and spend time together casually! You gave details about how your finances are handled to your spouse? Awesome – relax and watch a movie with them afterward! C.A.R.E. – 146

Leaving YOUR Legacy Planning is truly a gift for those you love. It is showing those around you that you care enough to think of them far before they will ever have to make one decision for you. Everyone has a legacy that they want to pass on. Whether it be to family members or to strangers, for many the desire to be remembered and to live on in others is strong. For all of us, life is indeed short. So watch a movie before you do the dishes…stay up that extra hour talking to a friend… reconcile any problems in relationships, express gratitude to those you care about, forgive yourself and others for being less than perfect…and above all else, express to tell those you care about what they mean to you—in whatever way works best for YOU. How someone wants to be remembered, and for what, is what life boils down to for many. All of us leave a legacy every day we are alive.

In My Shoes...

My cancer is terminal. The way I see it, I’m very fortunate to know that I have to make every moment count. With four adult children and four grandchildren, I know there will be great accomplishments and of course the little things that I won’t get to share. Sitting on the porch with my honey and watching our grandkids play in the front yard. I can go on but as I said this just makes me sad so I make the best of what time I have left. I am blessed with this rare form of breast cancer, if I can help someone else in the future, then I’ve done my job on this planet! Some of you ask me if there’s anything I need, and to not hesitate to ask. I do need one thing.... I need you all to give your partners, loved ones and your children lotsa hugs and kisses everyday, Reach out to your friends and family and let them know how much you love them and ask forgiveness to those people in your life that you have not spoken to. Life isn’t measured by how long we can stay on this planet but how well you can enjoy every day. Don’t take it for granted. We never know when and how we are supposed to go, but as I have said in life: May we always make an impression on others so that we can always be remembered... for the good that we did.

~Ernest

VOICES FROM EXPERIENCE HOW LEGACIES CAN BE LEFT – Writing own obituary or making special gifts of your possessions – Outline funeral arrangements. From buriel information to style of services – make these preferences known.

with others. – My mom let me know that all she wanted was to be in the comfort of her own home, surrounded by family – so that’s what she received. – We documented the fun times we had through photos.

– Make a bucket list – My dad took a lot of pictures growing up, so when he got sick he let me take as many pictures of him as I wanted– not once refusing. No matter how tired he was always smiling. – Phone voice memos and video allow for easy recording of messages that one wants to share

– Free-flowing journaling (without self-editing) is a very organic way to express your feelings. – Tell loved ones where they can go, look, think about when in the future they want to feel your presence.

C.A.R.E. – 147

Proud to be New Mexico Owned & Operated

C.A.R.E Everyone deserves to have a plan in place. End of life planning with dignity and care.

“Serving all of Northern New Mexico”

3232 Cerrillos Road, Santa Fe | 505-395-9150 | www.RiversideFunerals.com C.A.R.E. – 148

Like “cancer,” when the word “hospice” is heard, many thoughts and emotions can fill a person and their loved ones. Understanding exactly what hospice is and what its benefits are can help make that word feel more supportive than anything else.

Hospice and treatment do not coexist. If the condition improves, one has the option to come off of hospice. If six months have passed and condition remains, one will not have to relinquish hospice care.

Hospice care provides humane and compassionate “comfort care” for people in the last phases of incurable disease so that they may live as fully and comfortably as possible. It works to ensure that one approaches the end of life with confidence, peace, comfort and dignity. This focuses on quality rather than length of life. Hospice is recommended when one’s life expectancy is approximately six months or less, given that the illness runs its predicted course. Hospice care is focused on comfort and support for the patient and the whole family. The overall goal is to make all those – Pain and symptom control involved in the situation as comfortable – Supervision of care at home as they can possibly be. or in a facility – Spiritual care – Coordinated family meetings Hospice provides... – Bereavement care for grieving loved ones after a loss

Types of hospice HOME

Home hospice is care at home, and is the most common form of hospice. In home hospice, a family member or close friend serves as the primary caregiver/nurse and is responsible for overseeing most of the care. For people without this support, organized care programs can lend a helping hand.

FACILITY

Facility hospice centers include hospitals, independent hospices, nursing homes and long-term care facilities.

Questions to ask potential hospice providers + Do you have an outline of services, eligibility rules, costs, payment procedures, employee job descriptions and malpractice/liability insurance? + Are individual care plans created for each new patient?

MOST IMPORTANTLY: + Choose the hospice that you and your family feel most comfortable and satisfied with in all ways and anticipate getting cared for in the best way you need.

+ Is a primary caregiver a condition of admission? + Is there 24-hour access for assistance? + How quickly can you start hospice care? C.A.R.E. – 149

Check with your insurance company to see which of the agencies are elibible for coverage. Talk to a social worker about more options, including Medicare.

PRACTICAL ITEMS: Hearing Hospice

Hearing Hospice

ANTICIPATORY GRIEF

Anticipatory grief is a feeling A of grief before a death and AT is very common. These feelings do not mean a person is “giving up.” There comes a time in certain diagnoses where we accept that an illness is terminal and that recovery is not a possibility. When the end of life happens is out of anyone’s control. What IS in people’s contol is how they love and support the patient and those around them. You control when and how you help, the conversations, the signs of affection and your attitude. It’s difficult, but you can take those things by the reins. Sometimes families can feel blindsided if their time in hospice isn’t as long as they thought it’d be. Families should try to realize that the medical professionals cannot determine if it will be four hours or four months. There is no remedy to this cluelessness, and yes... that can feel extremely unsettling. HOW DOES HOPE FIT IN ALL THIS? When hospice enters the situation, hope is not lost – it ADJUSTS. A hope of recovery may transfer into a hope for meaningful, quality and comfortable time together. (See pages 126-130 for more information on navigating all forms of grief.)

A Dose of Info

CE LAN

from The Pros REBECCA FERBER, RN

HOSPICE CLINICAL SUPERVISOR The primary goal for a hospice nurse is to provide understanding and spiritual, physical, phycosocial and emotional support and guidance to a dying person and family, friends, caregivers and community. Hospice care neither prolongs nor hastens the process of dying. It is intended to provide in-home care and support to an individual and their family through hands-on help of the extensive hospice team. Hospice is compassionate care, where the patient and their family are supported in their own goaldirected end-of-life care. To learn more online from the Q & A with Rebecca and about The Hospice Center of Santa Fe, visit careguide.info

The Hospice Center of Santa Fe

Because Every Day Matters The Hospice Center of Santa Fe is our community’s home grown, local, not-for profit hospice/palliative care provider. Care plans are managed by a team of trusted Medical Directors plus a Nurse Practitioner who not only provide hospital to home care, but who make house calls! • Guaranteed same-day follow-up • Music Thanatology Services

• Highest Quality Of Care Star Rating • Grief & Counseling Services

Let us care for you 505-988-2211 The Hospice Center C.A.R.E. – 150

YOU can make a difference

Throughout Northern New Mexico, there are wonderful opportunities to make a difference in people’s lives and advance the work to eliminate cancer. Many volunteers have somehow been affected by a diagnosis and have chosen to give back to others in the fight. All people interested in making a difference in the lives of others are encouraged to get involved. Volunteers make a big difference to a lot of patients. They not only offer a warm blanket and snacks, but many are also cancer survivors. The work they do is critical in contributing to the quality of life for others. Everyone is so grateful for their help and their insight. Join a local team of caring ambassadors!

Reasons why people may volunteer ❤ Fills vacant time ❤ People depend on me ❤ In honor of a loved one ❤ Someone I care about asked me to ❤ It’s a cause you believe in ❤ The need matches my skill set

❤ Required amount of hours for the job ❤ It makes you feel helpful and gives an extra purpose

❤ You enjoy seeing the projects or people impacted by their actions

❤ For my resumé

Volunteer benefits People volunteer for a variety of reasons. Regardless of the intent, volunteers seem to find “takeaways” from their experience.

❤ Intrinsic satisfaction knowing you’re helping a project/others ❤ Comraderie with other volunteers ❤ Productive use of time

In My Shoes...

❤ Builds transferrable skills ❤ Meeting new people ❤ Helps me pay tribute to someone ❤ Provides memorable moments

Lin

HER VOLUNTEER EXPERIENCE AND MOTIVATION I’ve been involved in the ACS committees (Gala & Making Strides Against Breast Cancer walk) since 2012 and recently volunteered for the Cancer Foundation for New Mexico’s Sweeheart Auction. I’ve had many relatives and friends who were affected by cancer. They either survived after rigorous amount of treatments or unfortunately, they passed away. So, I volunteer on their behalf. I want to help raise much needed funds to help fund treatments and research. The purpose of Lin (on my volunteer efforts is not to obtain recognition. I give back to right) at help others in need who may be unable to volunteer, due to their the Making illness, etc. Strides ON VOLUNTEERING You don’t have to be a rocket scientist Against to help organizations. Any help, small or large, is very much Breast appreciated. Everyone has different skill sets that are necessary Cancer Walk and can contribute to the cause. People can participate and contribute within their own comfort levels, or they can certainly step out of their comfort zones and try something new. To read more online from Lin, visit careguide.info C.A.R.E. – 151

COMMUNITY: Volunteer for the Cause

Volunteer for the Cause

Cancer Foundation for New Mexico in Santa Fe

American Cancer Society

Volunteers at the Sweetheart Auction on February 9 2019 Personal support for patients in the treatment areas (See page 28) Fluent Spanish speakers are needed to help translate during exams and treatment. To volunteer, contact Caroline Owen, caroline@cffnm.org 505-955-7931, ext. 3

Road to Recovery program Drivers are needed in Santa Fe to drive cancer patients to and from their treatments. To volunteer, contact Shirelle Besse, shirelle.besse@cancer.org 505-262-6016 (See page 62)

Cancer Services of New Mexico Volunteers and exhibitors at the Family Cancer Retreat (See page 72-73) To volunteer, contact Mike Capeless, mike@cancerservicesnm.org 505-239-4239

Cancer Action Network ACS CAN Volunteers advocate to make meaningful change nationwide by meeting with legislators, planning events and encouraging new membership. To volunteer, contact Lacey Daniell, lacey.daniell@cancer.org 505-262-6014 (See page 158)

Making Strides Against Breast Cancer Volunteers for Santa Fe or Albuquerque walks can start or join a team, walk as an individual or help plan the event. To volunteer, contact Jessica Duncan, jessicaduncan@cancer.org 909-534-2565 Relay for Life Help plan and organize events in the local community. To volunteer, contact Angela Luna, acluna26@yahoo.com 800-227-2345 Distinguished Event (Black & White Ball) Help plan the local galas through engaging community, business and healthcare leaders to help raise funds for research and programs. Volunteers can also help organize silent or live auctions or help on the day of the event. To volunteer, contact Tim Tokarski timothy.tokarski@cancer.org 505-262-6022

VOICES FROM EXPERIENCE The patients have real needs and are suffering great discomforts. The illness has turned their world upside down. Many have no one to turn to. Why not volunteer and in doing so, remove one worry from a patient’s long list? Why not be a steady contact in an unpredictable and unreliable world? You feel better for it and it gets you out of your very limited everyday bubble. – Susan Spalding Monroe, Road to Recovery Program driver | American Cancer Society Volunteering in the infusion room is an act of service and love. I enjoy the tasks I do that increase patient comfort and relieve the nurses to do their important work. Every time I volunteer, I leave fulfilled and smiling for having the wonderful opportunity I have to be making a difference in this way. – Ronni Levine, Chemotherapy room volunteer & TOGETHER support group facilitator, Cancer Foundation for New Mexico After attending the Family Cancer Retreat I wanted to giver back. Seeing participants and volunteers become a little community for the weekend is incredible. In my experience friendships have extended well past the first retreat. The love and friendship that each participant receives provides them with the hope to face their challenges. –Family Cancer Retreat Volunteer | Cancer Services of New Mexico

To learn more about these volunteers, visit careguide.info C.A.R.E. – 152

Santa Fe Cares The City of Santa is proud to support American Cancer Society’s Making Strides Against Breast Cancer. City employees volunteer each year to participate in the march on their team “Santa Fe Strong.” The Environmental Services Division also partnered with Cascade, our cart manufacturer to offer the Pink Cart to our residents. The Pink Cart Program generated donations to the American Cancer Society to support research to end breast cancer. Residents can show their support by ordering a Pink Cart to replace their blue recycling cart. Call (505) 955-2200 if you are city resident and want to show your support by going pink!

Whether you have a blue cart or a Pink Cart, remember to recycling right! Check the lid for the list of acceptable items. Glass should not go in the cart, but can go to one of our recycling drop-off centers.

Residents can find out more information on the Environmental Services website: SantaFeNm.gov/ESD or by calling 505-955-2200.

C.A.R.E. – 153

With $67 million in grantmaking since 1981, the Santa Fe Community Foundation works to make sure all people in northern New Mexico have access to opportunity, including the resources to achieve and maintain good health and wellbeing. Join us in realizing health equity throughout our region and be a part of our efforts to provide our community members with the support they need to live a healthy and vibrant life.

C.A.R.E. â&#x20AC;&#x201C; 154

www.santafecf.org 501 Halona St. Santa Fe, NM 87505 Call us, 505.988.9715

Throughout the year there are many events that benefit cancer awareness, programs, research and services. There are also activities that are in honor of and meant to show tribute to the cause and those affected. Grab a group of friends and show you care in 2018 by attending or promoting with any of these events. It’s about fighting cancer the best way there is – together. In Collaboration

February

June

National Cancer Prevention Month

Polly’s Run | Albuquerque June 3 Annual 5K and Kids’ K road race honoring Polly Rogers and all the loved ones lost to pancreatic cancer. Raises awareness and funds for pancreatic cancer research at UNM Comprehensive Cancer Center pollysrun.com

April Spring Family Cancer Retreat – Albuquerque *FREE* (Cancer Services of NM) April 20-22 Marriott Pyramid North Hotel Provides a weekend of education, reflection and rejuvenation for adult cancer patients/ survivors, their family members and primary caregivers in a relaxing environment 505-239-4239 cancerservicesnm.org Relay for Life | Las Cruces April 13 6 p.m.- 6 a.m. relayforlife.org/lascrucesnm 4th Annual 5k Rudi Run | Albuquerque August 4 Albuquerque Academy Raises awareness and funds for spindle cell sarcoma at UNM Comprehensive Cancer Center kevinrudifoundation.com 505-717-5575

May Black & White Ball | Santa Fe May 12 Fundraiser/Gala to support American Cancer Society programs & research (food, dancing, live and silent auctions) santafegala.org C.A.R.E. – 155

Relay for Life | Clovis June 9 10 a.m. relayforlife.org/clovisnm Relay for Life | Gallup McKinley County June 15 6 p.m. – 6 a.m. relayforlife.org/gallupnm Relay for Life | Portales June 16 11 a.m. relayforlife.org/portalesnm

July Relay for Life | Santa Fe July 14 relayforlife.org/santafenm

COMMUNITY: Save the Date

Save the Date

November

August United Metro Relay of NM Albuquerque | August 4 10 a.m. – 10 p.m. relayforlife.org/albuquerquenm Relay for Life | Los Alamos August 17 6. p.m. relayforlife.org/losalamosnm

Light The Night | Albuquerque November 3rd | Downtown Civic Plaza Celebrates/commemorates lives touched by blood cancer lightthenight.org/nm | 505-219-0189

Gala Event | Albuquerque August25 acsalb.ejoinme.org/ MyEvents/2018AlbuquerqueGala

February 2019 Sweetheart Auction | Santa Fe February 9, 2019

October Casting for Recovery | Cimarron, NM October 5 –7 Educational retreat for women of all ages and stages of breast cancer castingforrecovery.org

Fundraiser/Gala to support Cancer Foundation for New Mexico’s programs & services for local families (live and silent auctions) cffnm.org/sweetheart-auction

Making Strides Against Breast Cancer | Santa Fe October 6 Celebrates/commemorates lives touched by breast cancer makingstrideswalk.org/santafenm Making Strides Against Breast Cancer | Albuquerque October 27 Celebrates/commemorates lives touched by breast cancer makingstrideswalk.org/albuquerquenm

Purple Light | Albuquerque (Pancreatic Cancer Action Network) October date TBD purplelight.org | nbowles@ pancanvolunteer.org

a survivor who gives In My Shoes...As back: Bernadette I have been involved with the American Cancer Society Making Strides Against Breast Cancer for the last eight years. I have been on the committee and a team leader. It’s a great opportunity for me to stay in touch with other survivors and continue to raise awareness about breast cancer in our community. It is so rewarding and encouraging to stand with others that have fought the battle and those that are fighting. I enjoy talking with others that have been diagnosed. I like to listen and I feel good when I can share optimism and encourage them to stay positive. Since I have been through this two times I try to inspire and encourage them to stay strong and positive. I don’t like the word ‘cancer.’ We give the word too much power and strength. It CAN be DEFEATED! To read more online about Bernadette’s story, visit careguide.info

C.A.R.E. – 156

Santa Fe’s arts and culture hub since 1979. Supporter of cancer awareness.

in the CINEMATHEQUE

in the TANK GARAGE GALLERY

Starting March 2 A FANTASTIC WOMAN

February 28, 6pm Critical Conversations:

”HHHH” — The Guardian A transgender singer faces scorn and discrimination after her boyfriend’s death.

Starting March 2 THE YOUNG KARL MARX

”HHHH … an intense, fervent film about the early development of communism…” —The Guardian

Starting March 23 LOVELESS

ACADEMY AWARD® NOMINEE BEST FOREIGN LANGUAGE FILM

”Hypnotic … a searing, finally overwhelming film … the story of domestic collapse that slowly develops into a withering snapshot of contemporary Russian malaise.” — LA Times

Screening Exclusively March 29 THE UNTOLD TALES OF ARMISTEAD MAUPIN

Feminism & Intersectionality in the Arts CCA Tank Garage • $5 A discussion panel discussing the feminist themes present in our current exhibit, Ciel Bergman: The Linens.

March 3, 2pm Artist Workshop: Prints & Plants

CCA Tank Garage • $5 Bring old t-shirts back to life in this printmaking workshop led by Liz Brindley of Prints & Plants.

March 8, 6pm Conversation: Photography in Cuba

CCA Tank Garage • $5 Lead by Nelson Ramírez de Arellano, dir. of the Fototeca de Cuba.

April 14, 12pm The Santa Fe Zine Festival

”HHHH” — The San Francisco Chronicle ARMISTEAD MAUPIN IN PERSON! Following Armistead Maupin through his journey from the Old South into a gay rights pioneer whose novels inspired millions.

CCA Tank Garage • $5 In its second year, the Santa Fe Zine Festival celebrates independent publishing.

June 1 - September 10, 2018 Ricardo Mazal Exhibition

C.A.R.E. – 157

COMMUNITY: Cancer in the Capitol

Cancer in the Capitol

ACS CAN, the nonprofit, nonpartisan advocacy affiliate of the American Cancer Society, supports evidence-based policy and legislative solutions designed to eliminate cancer as a major health problem. ACS CAN works to encourage elected officials and candidates to make cancer a top national priority. ACS CAN gives ordinary people extraordinary power to fight cancer with the training and tools they need to make their voices heard.

In New Mexico ACS CAN advocates for cancer prevention, early detection and improving quality of life for cancer patients and their families. Some examples include prohibiting the use of indoor tanning beds by minors, funding for tobacco prevention programs and increasing access to palliative care services at the time of diagnosis.

Photos by: Jason Stilgebouer

ACS CAN works on ensuring cancer patients have access to screenings and treatment. ACS CAN is seeking volunteers to help fight back against cancer.

Nationally The New Mexico Ambassador Constituent Team (ACT) is comprised of anyone who cares about cancer and works to collectively make an impact on cancer research funding.

In My Shoes...

Lacey

When my brother was diagnosed with melanoma in 2012, our family wanted to find ways to prevent others from having to go through what we were going through. I was in grad school for my Masters in Public Administration and was particularly interested in what could be done through public policy to help prevent cancer, and also to help cancer patients access the care they need. “Advocacy” is all about sharing your story. You don’t have to be a policy wonk or even follow politics closely. Telling your cancer story – whether it’s via email/action alert, a phone call, a letter, or in person – has the ability to change and save thousands of lives in New Mexico. Contact Lacey at lacey.daniell@cancer.org | 505-262-6014 To learn more information from Lacey, visit careguide.info

Stay updated on initiatives “LIKE” @ACScan on Facebook

Follow @ACSCANnm on Twitter C.A.R.E. – 158

Visit acscan.org/nm

Every day researchers and grantees in communities across the country are working to find breakthroughs in cancer – and better ways to prevent, treat, and ultimately aim to cure the disease. Below are highlights from American Cancer Society’s 10 recent cancer research projects.

Recent Cancer Insights 1. CANCER DEATH RATES DOWN The mortality rate for cancer in the United States has dropped another 1.7 percent, and continues to decline among both men and women, among all major racial and ethnic groups and for the most common types of cancer. Society researchers estimate that 1.5 million cancer deaths have been averted since the early 1990s due to effective early detection, cancer treatment and cancer prevention efforts. 2. WALKING STUDIES A study led by American Cancer Society researchers has found that even low levels of walking are linked with lower mortality, which means walking may help people live longer. The Society recommends adults get at least 150 minutes of moderate-intensity activity (equal to a brisk walk, at a pace of 3 miles per hour) or 75 minutes of vigorousintensity activity (makes your heartbeat and breathing faster, and makes you sweat) each week, preferably spread throughout the week. 3. MORE IMMUNOTHERAPY The cancer research world is dedicating increasing energy to a rapidly evolving type of treatment that has the potential to be more effective – and in some cases less toxic – than many of today’s existing options. 4. FDA APPROVES NEW DRUGS TO FIGHT LUNG CANCER The FDA has approved the targeted therapy drugs Tafinlar and Mekinist to be used together to treat people with a specific type of non-small cell lung cancer that has spread in the body (metastasized). These are the first FDA drug approvals for a type of lung cancer with a BRAF V600E gene mutation. 5. GETTING BREAST CANCER CELLS TO STOP MULTIPLYING Ways to lull breast cancer cells into a permanent sleep, which could potentially stop a tumor in its tracks, is getting investigated.

6. VITAMIN D-BASED CANCER DRUGS Early research suggests that vitamin D, has the potential to be used as a starting point in the creation of new drugs to treat skin cancer and basal cell cancer. 7. LUNG CANCER DREAM TEAM FORMED More than 35 of the top lung cancer researchers in the United States, dubbed the lung cancer Dream Team, are coming together to work on one of the most difficultto-treat lung cancers – those that have a mutation in a gene called KRAS. The Dream Team is funded by a $20 million grant from the American Cancer Society and Stand Up To Cancer (SU2C). 8. INCREASING HPV VACCINATIONS The vaccine to prevent HPV infections are safe, effective and can protect girls and boys from getting several different types of cancer when they get older. It protects against highrisk types of the virus that cause most cervical cancers. Routine HPV vaccination for girls and boys should be started at age 11 or 12. The vaccination series can be started as early as age nine. 9. DATA WITH DECISION MAKERS American Cancer Society’s next cancer prevention studies will focus on molecular subtypes of tumors to aid in the development of targeted prevention, the link between obesity and cancer, how the use of e-cigarettes influences the smoking of regular cigarettes, cancer in the elderly, and to inform cancer survivorship guidelines.worldwide. 10. FIGHTING TOBACCO Fighting back against the tobacco epidemic: The American Cancer Society and the World Lung Foundation launched “The Tobacco Atlas, Fifth Edition, and its companion website, tobaccoatlas.org Source: Source: ©2015, American Cancer Society, Inc. No. 030935,cancer.org

C.A.R.E. – 159

COMMUNITY: Findings for the Future

Findings for the Future

. In Collaboration withCollaborators

2018

On behalf of all people affected by cancer and their In Collaboration with families, the Santa Fe New Mexican would like to thank the following community partners for making this resource possible:

C.A .R .E.

CANCER AWARENESS RESOURCE &

EDUCATION GUIDE

Managing LIFE with Cancer Being a Caregiver Supportive Resources

Family & Friends Dynamics

Coping with Side Effects Handling Practical Items

and

Tips & Testimonies from those who know! A publication of the

Partners

Supporters

Helping Hands

2018

THANK YOU: Local Partners

Local Partners In Collaboration with

C.A .R .E. CA

CANCER AWARENESS RESOURCE & EDUCATION GUIDE

For copies or details on this magazine: Call 505-690-6308 | Email care@sfnewmexican.com Managing Visit careguide.info LIFE with C.A.R.E. â&#x20AC;&#x201C; 160 Cancer Being a Caregiver

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C.A.R.E. â&#x20AC;&#x201C; 162

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