2016
C.A .R .E.
CANCER AWARENESS RESOURCE & EDUCATION GUIDE
LIFE with Cancer Family & Spousal Dynamics Winning in the Workplace Therapeutic Activities
ALSO Caring for the Caregiver How to Support a Friend Surviving & Thriving
+
Provided by the
Santa Fe New Mexican
Tips and Testimonies from those who know!
What do you look for in a
diagnostic imaging provider?
Latest technology Exceptional service Subspecialty expertise Competitive pricing
For state-of-the-art diagnostic equipment, doctors specially trained in the areas of care you need, competitive pricing and a level of service uncommon in healthcare today, visit Santa Fe Imaging. You’ll be glad you did. “No one likes it when something is wrong, but if you have to go somewhere for help, you can’t find a better place than Santa Fe Imaging! It always starts with the people and SFI has the kindest and most helpful people. They all know exactly what they are doing and always do it with a smile and a laugh, and we can all use a laugh when something has gone amiss with our body. I can’t say enough good things about the people who work at Santa Fe Imaging!” – Robert B., MRI Patient
S A N TA F E I M A G I N G 1640 Hospital Drive ❘ Santa Fe, NM 87505 www.santafeimaging.com Main Line: 505.955.8708
WHY C.A.R.E.? who you are or what your situation is, you have support and those who can relate. For, this magazine is about something bigger than ourselves. When it comes to cancer, or anything else in life, it can often be best when approached as a team. This effort would have never been possible without the collaboration of so many: the local nonprofits, professionals, talented designers, eager volunteers, and contributing community partners.
C.A.R.E. was made with one intention...to let people know that they are NOT ALONE. When it comes to cancer; some may have experienced the battle themselves, some may know about being a caregiver, others may closely know someone with the disease or maybe you are just aware of the cause. Regardless of where you lie on this spectrum, this guide is for you. C.A.R.E. hopes to educate the curious, comfort those in the fight, and celebrate others. It hopes to say things that many might only think. It strives to put in print, the feelings that you might not be able to communicate. It wants to makeEveryone, a caregiver feel understood and in some form, has heard the “c” word and has of relationship with it. Some may have provide guidancea certain to akind helpless friend. There is may know about no right or wrongexperienced way tocancer feelthemselves, about some cancer--it is being a caregiver, others may closely know someone with simply importantthetodisease acknowledge that there areefforts or might just be aware of the universal resources and support areyouinvited towards theavailable. cause. RegardlessYou of where lie on this to spectrum, guide is for you. hopes to educate read C.A.R.E. from frontthisto back or C.A.R.E. simply skip to the curious, comfort those in the fight, and celebrate the sections of your choice. It will lead you from others. It hopes to make a caregiver feel understood and the basics of cancer, to taking you through theis cancer provide guidance to a supportive friend. The truth the journey that never many know well. Learn affects just oneso person. Although there isfrom no right or wrongand way tofeel deal with such a diagnosis,This it is important the expert survivors understood. to acknowledge that there are resources and support won’t replace the advice of your personal medical available. team, nor can it be a complete “manual” to cancer You are invited to read C.A.R.E. from front to back or — we understand there can be ofnoyoursuch simply skip to the sections choice.thing. It will lead C.A.R.E. is aboutyoucommunicating noyoumatter from the basics of cancer,that to taking through the every day of navigating the disease by use of facts, tips, and testimonies from those who know. This won’t replace C.A.R.E. Made the advice of your personal medical team, nor can it be a complete “manual” to cancer — we understand there can be no such thing. C.A.R.E. is about communicating that
The true heroes, however, are those that were
willing toyou share their no matter who are or what yourstory situationfor is, youthe are betterment of never alone inFor your experience. For, this magazineand is about others. it is their candid vulnerable consomething biggerwho than ourselves. tributions made this resource possible. Your
When it comes totruly cancer, made or anythingaelse in life, it can This magazine guidance difference. often be best when approached as a team. This effort aims to bring awareness the best way we know would have never been possible without the collaboration C.A.R.E. is especially dedicated to ofhow…together. so many: the local nonprofits, professionals, those who have been,andwho are,those and those who will contributing Partners & Supporters, especially who expressed their candidThank expertise and be generously affected by cancer. you for reading. May vulnerable opinion for this guide. Your guidance truly you find strength and comfort in your journey. made a difference in the conception of C.A.R.E. This resource aims to bring awareness the best way we Always, know how…together.
Kathryn Lopez
C.A.R.E. is especially dedicated to those who have been, C.A.R.E. Project Manager who are, and those who will be affected by cancer. Thank you for reading. May you find strength and comfort in your journey.
Possible By: Always,
Be seen in Santa Fe.
Kathryn Lopez C.A.R.E. Project Manager
Presbyterian Medical Group makes healthcare convenient at our Santa Fe clinic. We provide a wide range of services close to home: · · · · · · · · ·
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C.A.R.E. C A N C E R AWA R E N E S S R E S O U RC E & E D U C AT I O N G U I D E
P U B L I S H E D F E B R UA RY 28, 2016 Cover
Elspeth Hilbert
Owner
Robin Martin
Publisher Tom Cross
Advertising department
advertising director Heidi Melendrez 505-986-3007 C.A.R.E. project manager Kathryn Lopez lead designer Joan Scholl
Design
Elspeth Hilbert, Rick Artiaga
Advertising sales
retail sales manager Art Trujillo Vince Torres Mike Flores Wendy Ortega Chris Alexander Dana Teton Deb Meyers
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office: 202 E. Marcy St. hours: 8 a.m.-5 p.m. Monday-Friday advertising information: 505-995-3852 delivery: 505-986-3010, 800-873-3372 for copies of this magazine, call 505-428-7622 or email care@sfnewmexican.com
Knowledge is power 6 10 12 16
Cancer 101 Smart steps to prevent cancer Early detection Who’s on my team?
The Journey 18 21 22 26 28 30 34 35 44
Beginning the journey Exploring your options Life with cancer Tackling the treatment related side-effects Combat fatigue and chemo brain What’s on the menu – Food is your friend Navigating a relapse Surviving and thriving Programs and Services
Resources 40 41 42 44 46
Being your own advocate Make a connection Gain support Programs and services Supportive Care: The Palliative Path
49 53 56 58
Feed the mind, body, soul Looking your best: The fashion of a fighter Shopping: The essentials Caring for the caregiver
Self care
Relationships and Support 63 65 68 70 72 75 76 78
In the eyes of your child Talking with your children Spousal relations A child/adolescent’s diagnosis Family dynamics Your “extended family” Dealing with loss What do I say?: How to be a supportive friend
Taking care of business 82 85 87 89 92
Cancer + Career: Winning in the workplace Ins & Outs of Paperwork: Legal/Insurance issues Planning through pain Cancer costs Handling hospice
Community
93 Mark your calendar 94 Make a difference 95 Tender Loving Coupons
SOURCES: American Cancer Society, www.pancan.org, Hereditary Cancer Assessment Program, UNM, National Cancer Institute, CHRISTUS St. Vincent, Cancer Foundation for New Mexico, cancer. net, nmcancercare.org, New Mexico Cancer Care Alliance, National Institutes of Health, Cancer Services of NM/Hematology Oncology Associates, Oncology nurses, testimonies from those affected by cancer, simplehealth.com, CHRISTUS St. Vincent Cancer Center Oncology Nurses, www.cancer.org, Cooking through Cancer, www.heart.org, cancer.net, Gloria Media & Supportive Care Team at the Presbyterian Cancer Network, Lance Armstrong Foundation, A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies, www.livestrongcareplan.org, Cancer Services of NM, Jesse and MacKenzie Allen, Leukemia & Lymphoma Society, UNM Cancer Center See www.cancersupportnow.org for more programs and organizations, St. Vincent Hospital Foundation, Christus St. Vincent Holistic Health, & Wellness, www.stvin.org/holistic-health-treats, American Society of Clinical Oncology’s Advanced Cancer Care Planning, Presbyterian Medical Services, NM Dental Foundation, caring.com, “Passages in caregiving”, “Things I wish I’d known” by Deborah J. Cornwall, Cancer Services of NM, , Ronni Levine, Licensed Marriage and Family Therapist and leader of CFFNM’s TOGETHER support group, “Caregivers Managing Guilt,” by Vicki Rackner, M.D., www.nmcancercare.org, 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, MD, Dr. Egli- CHRISTUS St. Vincent, Cuddy & McCarthy Law Firm, Cancer Services of NM, www.nmcancerhelp.org, www.bewellnm.com, CancerCare Connect
This publication provides information about services of cancer support agencies, hospital treatment centers, and governmental agencies to meet the needs of cancer patients and their families across New Mexico. To access the free on-line directory go to:
2016 C.A.R.E.
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. . . n o n r Lea Cancer 101
Getting down to the basics of cancer
Today, many people are cancer survivors or are living with cancer, and many more are touched by their friends’ and loved ones’ experiences. Although cancer is prominent in society, there still may be questions surrounding it. Use this section to help you feel more confident about the subject matter and understand certain aspects of cancer.
NOTE: Oncology is the branch of medicine concerned with the diagnosis and er. treatment of canc
Knowledge is power
The more you know about cancer, the less overwhelming a diagnosis may be. Cancer is the general name for a group of more than 100 diseases. The body is made up of trillions of living cells, and normal body cells are generally dominant, growing, reproducing and dying in an orderly way. Cancer starts when abnormal cells — which are always present — begin growing rapidly and invading other, normal cells. DNA is in every cell and it directs all 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 with the same damage. Although DNA damage may result from something obvious such as cigarette smoking or sun exposure, it is actually 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 types of treatment for each specific kind. The cancer care team will discuss the treatment for each person.
Factors that influence treatment choices are: P P P P P
Type of cancer Stage (amount) of the cancer Person’s overall health Likely side effects of the treatment (commonly known as “therapy”) The probability of curing the cancer, controlling it to extend life or relieving symptoms. 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 to control the cancer OR cure the cancer. It’s important to know the difference. 2016 C.A.R.E.
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“Families” of Cancers Carcinomas
create an actual tumor.
Most cancers are carcinomas (i.e. breast, lung, colon) Cancers that begins in the lining layer of organs. They can invade surrounding tissues and organs and spread to the lymph nodes.
Leukemias
Sarcomas
Lymphomas
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).
Melanomas
Serious forms of skin cancer that appear on the surface of the skin is melanoma. Easily treated if detected early. If left untreated, they can grown down into the skin, reach blood and lymphatic vessels/spread through body.
Hematologic (blood) cancers
Cancers that don’t involve a tumor that grows and sometimes spreads, hematologic cancers primarily affect blood, bone marrow and lymph nodes and may or may not
These types of cancers are immature/abnormally large cells arising in bone marrow and block the production of normal white and red blood cells Most cancers are carcinomas (i.e. breast, lung, colon) Cancers that begins in the lining layer of organs. They can invade surrounding tissues and organs and spread to the lymph nodes.
Myeloma
These types of blood cancer that starts in plasma cells inside bone marrow. Abnormal cancerous plasma cells are called myeloma. They produce too much of the same antibody, which accumulates in the blood and may lead to organ (kidney) damage.
Surgery
Surgery is often the first treatment used if the cancer may be removed from the body. Sometimes only part of the cancer may be removed. Radiation or chemotherapy might be used to shrink the cancer before or after surgery.
Chemotherapy
Doctors use chemotherapy or “chemo” drugs to kill cancer cells. Usually, the drugs are given intra-venously (IV or into a vein) or taken by mouth. Neither is more severe or has worse side effects than the other- it is just a different form of administration. Chemo drugs travel throughout the body in the bloodstream. They can reach cancer cells that may have spread away from the tumor.
Radiation therapy
Radiation therapy is treatment with high-energy rays (such as X-rays) to kill or shrink cancer cells. The radiation may come from outside the body (external radiation) or from radioactive materials placed right into the tumor (internal or implant radiation). Getting external radiation is a lot like getting an X-ray. It doesn’t hurt, but it can cause side effects.
Other types of cancer treatment
Other kinds of treatment you might hear about include targeted therapy, stem cell or bone marrow transplant, and immunotherapy. Hormone therapy is another type of treatment that’s sometimes used to treat certain kinds of prostate and breast cancers. If undergoing any kind of surgery, discuss anesthesia options and recommendations with your doctor.
Radiation at a glance: Things to expect
• All participants wear robes and are in a waiting co-ed room (without caregivers) • Treatments are given Monday through Friday (5 a week) • One “round” can be anywhere from 2 -7 weeks (depending on the type and stage of radiation) 2016 C.A.R.E.
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What do cancer ‘stages’ mean?
The process of finding out whether cancer has spread, and if so, how far, is called “staging.” Clinical staging is an estimate of the extent of cancer based on physical exam, biopsy results and imaging tests. It’s essential in determining how a cancer will be treated. The “TNM staging system,” which is used most often, is typically based on three key pieces of information. T refers to the main tumor (its size and/or whether it has grown into nearby areas); N describes whether the cancer has spread to nearby lymph nodes; M shows 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 the cancer has spread. A higher number means a more advanced cancer. Stage 0
is cancer in which cancerous cells have not invaded neighboring tissue. Some cancers never progress beyond this stage.
Stage I
is localized cancer, in which a single tumor has crossed the cancerous cell’s membrane.
Stage II
is cancer in which the tumor has spread to nearby tissue but has not spread to lymph nodes.
Stage III is cancer in which cancer cells have reached nearby lymph nodes and may have traveled through the lymphatic system into the bloodstream. Stage IV is metastatic cancer, in which the cancer cells have entered the bloodstream and spread to distant organs. Numbers and titles surrounding your cancer help determine your care. Try not to get caught up in the figures. Instead, put more focus on living your daily life the best way you can.
Glossary of Terms
Concepts and the language that come in cancer-related discussions can seem foreign to most. Get familiar with some basic terms to help understand the “lingo” used: ANEMIA is a condition that develops when your blood lacks enough healthy red blood cells or hemoglobin. BIOPSY A biopsy removes 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 where it may be originated. COMPLETE BLOOD COUNT (CBC) A CBC is 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 using imaging tests, lab tests or biopsy. For most types of cancer, a biopsy is needed to
be sure of the diagnosis. IMAGING TESTS Imaging tests are used to make pictures of internal body structures. Some imaging tests used to help detect or stage cancer are X-rays, CT scans, MRIs, PET scans and ultrasound. IMMUNE SYSTEM The complex immune system helps the body resists infection by germs, such as bacteria or viruses, and rejects transplanted tissues or organs. The immune system may also help the body fight some cancers. IMMUNOTHERAPY Immunotherapy (biologic therapy) helps repair or stimulate a person’s own immune system to find and destroy cancer cells as it does to fight off foreign bacteria.
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LESION A lesion is 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 lymph node is a small, bean-shaped collection of immune system tissue found throughout the body along with lymphatic vessels. 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. These nodes are called “lymph glands.” *METASTASIS Metastasis is the process of cancer cells spreading to other parts of the body where they can grow and form new tumors. NODULE A nodule is a small, solid lump that can be felt or seen on an imaging test. NUETROPENIC FEVER A fever is considered nuetropenic if the person’s immune system is heavily weakened (white blood cell count low) and seemingly unable to fight off the fever. PHOTOCOAGULATION OR PHOTO ABLATION 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. PORT A port is a central line surgically implanted under the skin of a person’s chest to provide access to administer IV medications into a large vein. Talk with your doctor about port options for treatment. PROGNOSIS The prognosis is a prediction of the course of the disease; it describes the outlook for the chances of survival. REMISSION A remission defines the period of time when the cancer is responding to treatment or is under control. In complete remission, all the signs and symptoms of the disease go away and cancer
cells can’t be found with any of the tests. Partial remission is when the cancer shrinks but does not completely go away. Remission can last anywhere from many weeks to many years. One person could have many remission periods if there is a recurring cancer. This term can mean something different to everyone. RESECTION Surgery to remove part or all of an organ or other structure is called a resection. TERMINAL In medicine, “terminal” is generally understood to mean that the disease can no longer be effectively treated or cured. TRANSFUSION Blood or blood products that are given into a vein (intravenous or IV) are called transfusions. Most such products are taken from unrelated donors and tested for disease before use, but 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 (non-cancerous) or malignant (cancerous). ULTRASOUND OR ULTRASONOGRAPHY This uses a test in which high-frequency sound waves to make pictures of the inside of the body. The sound wave echoes are picked up and displayed on a computer screen. QUALITY OF LIFE Overall enjoyment of life, which includes a person’s sense of well-being and ability to do the things that are important to him or her is called quality of life. WHITE BLOOD CELLS White blood cells help defend the body against infections. There are many types of white blood cells. Certain cancer treatments, such as chemotherapy, can reduce the number of these cells and make a person more susceptible to get infections. X-RAY X-rays are a form of radiation that can be used at low levels to make an image of the body or at high levels to kill cancer cells.
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Smart steps to help prevent cancer
It is important to be your own advocate for your body---and know what your body is telling you. Staying away from harmful habits can contribute to your health.
Stay away from tobacco
Exercise
Reach a healthy weight/eat well
Limit alcohol
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. Being overweight or obese raises the risk for many types of cancer. Eat fresh fruits, vegetables and minimally processed foods. Save the sugar and high-fat foods for an occasional treat.
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 days a week. 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.
The Santa Fe Prevention Alliance is committed to preventing underage drinking and encouraging adults to model and practice low risk drinking. Because we care about you and our kids, we encourage everyone to make healthy choices about alcohol. Join our Safe Celebrations campaign. When you host a gathering, consider an alcohol-free event. If you decide to serve alcohol, follow our 10 tips for Safe Celebrations.
Go to: santafepreventionalliance.com/education or find us on 2016 C.A.R.E.
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RECOMMENDED CANCER SCREENING TESTS 20-65 years old
Get annual check-ups 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 who has had prostate cancer before age 65 should talk with a doctor about testing starting at age 40. Women ages 45 to 54 should begin having mammograms every year.
50-65+ years old At age 55, talk to a doctor about your smoking history and about a lowdose CT scan to screen for early lung cancer.
Having 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.
ADDITIONAL TESTS WOMEN Breast cancer testing
Women ages 55 and older should get a mammogram every two years or continue yearly screening. If you are at higher risk for breast cancer than most women, talk to a healthcare professional to find out if you need other tests done with your mammograms.
THESE SPECIAL TESTS FOR CERTAIN CANCERS ARE RECOMMENDED FOR YOUR AGE AND GENDER: MEN Colon cancer testing
Find out if you are at higher than average risk for colon cancer because of family history, genetic disorders, or other factors.. If you are at increased risk, talk to a doctor about when you need to start testing and what tests are right for you.
NOTE: es tal Foundation provid The St. Vincent Hospi s, biopsies and other ram og mm free ma ured those who are unins diagnostic tests for under the Affordable y alif qu n’t and do vider to contact Karl Care Act. Ask your pro-5409 to arrange for 13 5-9 50 at Ferguson authorization.
WOMEN Breast cancer testing
Find out if you are at higher than average risk for breast cancer. If you are at high risk, talk to a doctor about when you need to start getting mammograms or other tests. All women should be familiar with the known benefits, limitations, and potential harms linked to breast cancer screening. They also should know how their breasts normally look and feel and report any breast changes to a healthcare provider right away.
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... n o i t c Take A Tips for early detection
Become familiar with your body, acknowledge when it changes, and get a checkup. When cancer is spotted early, the odds are much better for successful treatment, possibly avoiding surgery, and keeping it from spreading. That means a much better chance for a cure.
Toxic thoughts that prevent one from getting checked: “It won’t happen to me” “I don’t want to know the answer” “I’m too busy to deal with a situation if they find anything”
What should I look for?
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. No symptom should be ignored or overlooked, especially if it has lasted a long time or is getting worse. If someone notices and remarks on changes in the way you look or act, take it as an expression of concern, and get yourself checked. These are some of the more common signs of a possible cancer. If you have any of these, don’t panic, but DO see your doctor or nurse practitioner and ask for a thorough screening.
Signs and symptoms can include • 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 inside the mouth or white spots on the tongue • Unusual bleeding or discharge • Blood clots in the veins or legs
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SELF CHECK, SIGNS AND SYMPTOMS ALL MALES
Prostate Cancer Check
If you observe ANY kind of abnormality in your body, don’t wait---tackle this potential health problem. Information and information early is crucial.
ALL FEMALES
Breast Cancer Check
MALES & FEMALES
Skin Cancer Check
Early detection is vital to surviving skin cancer
It is imperative to catch skin cancer early, when it is in its most treatable and curable stages. You don’t need any X-rays or blood tests to find skin cancer early. Monitor your own skin to check for changes using your eyes and a mirror, preferably once a month. Use the ABCD rule to look for any suspicious or unusual moles: NOTE:
Skin cancer is the • Asymmetry—one half of the mole does not match the other. most commonly • Border—edges of the mole are irregular (blurred, ragged). diagnosed cancer • Color—color is not uniform and may have patches of pink, red, white or black. • Diameter—melanoma moles are usually larger than 1/4 inch, but this is not always the case
SCREENING SPOTLIGHT: “Your skin is your body’s largest organ… so you need to take care of it.” – CHRIS
Genetic testing
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 NOTE: types of family Talk to your y history. Genetic insurance compan counseling to see if/how genetic testings should be part . might be covered of the genetic testing process. If you have immediate family members with cancer, genetic testing is an option to explore.
BREAST CANCER: BRCA test “Since I had lost both my parents from this disease, I was given the BRCA gene test. It was a very simple blood draw along with answering several family history questions.” – Breast Cancer Survivor, 50+ years of age What is hereditary cancer? 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 change on to their children. Approximately one in every 10 individuals with cancer has an inherited (genetic) form of cancer. Who should bring up genetic testing? 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 each person to consider genetic testing. SOURCE: American Cancer Society, Hereditary Cancer Assessment Program, UNM
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BREAST DENSITY: Determine Your Risk. Understand Your Options. Women with very dense breasts are
4-5
times more likely to develop breast cancer than women with low breast density.
40%
of all women have dense breast tissue
55%
of cancers found with 3D Automated Breast Ultrasound are small and invasive but are detectable before they become life-threatening.
What is a dense breast? Breast tissue is made up of varying mixtures of adipose or fatty tissues, glandular components, lymphatics and blood vessels. Breast tissue is categorized by mammography in four classifications:
Fatty
Scattered Fibroglandular Densities
SFI WC Whole Breast Screening US_double ad_v5.indd 1
Heterogeneously Dense
Extremely Dense
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A case of black and white For women with dense breast tissue, mammograms can be difficult to interpret because their fibrous tissue appears white on the image. Cancerous tumors also appear white, so they become invisible and difficult to differentiate. With 3D Automated Breast Ultrasound, tumors appear dark against the white dense breast tissue. Furthermore, the images generated are available in a video sequence, and not single pictures like a mammogram. This means the video can be stopped, magnified and adjusted to give the radiologist a unique 3D view of the whole breast. On ultrasound, cancers appear dark against the white background of dense breast tissue.
On a mammogram of the same breast, the cancer is not visible against the dense breast tissue.
Are you a candidate? 3D Automated Breast Ultrasound is an adjunctive examination to mammography. It is an FDA-cleared technology and is recommended for women who: • Have a family history of breast cancer or a previous breast biopsy showing pre-cancer or cancer
• Have dense breast tissue • Have breast implants • Have lumpy, or fibrocystic, breasts
If you would like more information about Whole Breast Screening Ultrasound, please visit our website or call us at (505) 983-9350. 1640 Hospital Drive ❘ Santa Fe, NM 87505 Phone: 505.983.9350 ❘ www.santafeimaging.com
SFI WC Whole Breast Screening US_double ad_v5.indd 2
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H
aving a holistic approach to your care is critical. You have so many needs... Utilize these professionals to help support your whole self.
..
y. a w A Ask
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Together Everyone Accomplishes More PRIMARY CARE PROVIDER
MEDICAL ONCOLOGIST
I might have been the one to detect your cancer. I help manage other chronic health conditions, keep you up to date on your health care maintenance, and work with you to see who else needs to be involved in your health care team.
I specialize in treating people with cancer. I will be reviewing your scans and making decisions on your treatment/medications. Many times I specialize in your specific type of cancer.
Fred Kullman, MD CHRISTUS St. Vincent Regional Medical Center
Scott Herbert, MD, CHRISTUS St. Vincent Cancer Center
RADIATION ONCOLOGIST
RADIOLOGIST
I am a doctor specially trained to read X-ray images. I analyze your results and communicate my findings to your oncologist/doctor.
I specialize in radiation in the treatment of cancer and work closely with other physicians as part of your multi-disciplinary medical team.
Donald Shina, MD, CHRISTUS St. Vincent Cancer Center
Dr. Monica Saini specializes in breast imaging and is a nationallyrecognized expert in the use of 3D Automated Breast Ultrasound Santa Fe Imaging
SURGEON
PHARMACIST
For those that need surgery to remove cancerous cells or areas of the body, I consult with you and am responsible for your operation.
I will be called to prepare your medicine for you. Feel free to ask me questions regarding your medication.
Anna Voltura, MD CHRISTUS St. Vincent Cancer Center If you don’t have a primary care physician. Get one. Your oncologist will manage your cancer, but you need someone to oversee your general health. It’s important to know and acknowledge your medical team’s specialties and ask questions! 2016 C.A.R.E.
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NURSE PRACTITIONER FOR ONCOLOGY
ONCOLOGY NURSE
I work directly with your oncologist to ensure all aspects of your care are addressed during treatment. I administer your chemotherapy/radiation therapies, integrative/nutritional referrals, social work/program referrals, and manage side effects/symptoms (fatigue, appetite loss) while providing emotional support for you and those around you.
I work very closely with your oncologist on your treatment plan. I sometimes see you in between your visits with your oncologist to make sure you are doing okay with the treatment. Jennifer Porter, NP, CHRISTUS St. Vincent Cancer Center
Yvette Romero, RN, CHRISTUS St. Vincent Cancer Center
PHYSICAL THERAPIST
PSYCHOLOGIST/ COUNSELOR
I am one who helps you with talk therapy. I do not prescribe medications but we focus on how you are feeling, healthy thoughts, and work on minimizing those thoughts which are not helpful to our well-being. I can facilitate group sessions or individual sessions depending on your preference.
I will work with you on exercises and physical activities if you need to gain more muscle strength and movement.
RELIGIOUS & SPIRITUAL LEADER
SOCIAL WORKER
I can talk with you and your family about your emotional or physical needs and can direct you to support services and resources that best fit your situation.
I can help you and your family navigate through this journey mentally and emotionally. I may be a chaplain, minister, priest, rabbi, imam, or youth group leader.
Karen Gano, LCSW CHRISTUS St. Vincent Cancer Center
Rev. Hollis Walker- PHOTO CREDIT PETER OGILVIE Ordained minister and chaplain for Ambercare Hospice
PALLIATIVE CARE PATIENT NAVIGATOR
MEDICAL ASSISTANT
I am the first person you interact with on visits. Whereas, I am not informed about your treatment/condition- I do check your weight, vital signs, and check to see if your medication has changed. I prep you for your doctor/nurse practitioner/oncologist.
I will help to provide resources that will improve quality of life for those facing a terminal illness.
Benjamin Baros, MA Devargas Health Center
Palliative Care Patient Navigator-Kristin St Clair CHRISTUS St. Vincent Cancer Center
NUTRITIONIST
DOCTOR OF ORIENTAL MEDICINE
I will assist you in your taste related treatment related side-effects and help to set up meal plans that are manageable.
I provide treatments that can help patients better tolerate the side effects they may experience while undergoing cancer therapies; i.e. acupuncture, massage.
Doctor of Medicine-CSV Eric Ray Buckley DOM CHRISTUS St. Vincent Holistic Health & Wellness Center
Nutritionist- Elizabeth Jaramillo-Lopez, RD, LD CHRISTUS St. Vincent Cancer Center 2016 C.A.R.E.
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E
verybody’s journey is a different one
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~ CANCER SURVIVOR
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Beginning the Journey
“You have cancer.”
Three small words. Yet, a world of impact. It is hard to forget the year…date, even the time this news was given. No one can ever prepare to wake up one morning and hear that news. From that day forward you know your life would never truly be the same. There isn’t a right or wrong way to react to such news...there is simply YOUR way. Let that day be the first lesson that how doing things YOUR way is and will always be the right way…and all you are expected to do.
WHAT I DID WHEN I FOUND OUT I HAD CANCER • I stared at the doctor and said absolutely nothing • I heard nothing else that was said • I sat in the parking lot and cried in my car • I kept it to myself for a while • I held the phone in silence. • I held my daughter’s hand and we teared up • I had my husband call everyone... my family/friends • I called my husband to come and pick me up • I looked at my daughter and granddaughter and didn’t say a word • I automatically kicked into “survival mode” and made a decision that I was going to fight • I felt like I was a disappointment to my family • I asked God “why? I’ve tried to be a good person.” • I just sat there and started crying • 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 was shocked • I made a commitment that it wasn’t going to get the best of me • I didn’t ask any questions…because I didn’t know what to ask • I thought “I can’t have cancer…I’m too busy” • I sat quietly in a room thinking about my husband and our two young sons. I couldn’t think or concentrate clearly. • I remember asking, “What do I do now?” • I felt like my world fell apart • I thought, “I’m going to be one of the survivors” (*based on testimonies) 2016 C.A.R.E.
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Life will never be the same from this point forward for you or those close to you. Acknowledge this right away. And remember that, even with the changes, you have the power to create a new, more intentional version of your life.
“Cancer does not discriminate against age, gender or race. It can happen to anyone at any time and it helps to teach us to treat life the way it was meant to be treated with love, respect, and kindness. I don’t take life for granted but truly cherish each day for the true blessing it is now.” – PAULA
Taking the first step
After the initial shock, feelings, or reaction wears off, it is important that you determine whom you choose to take on this journey with you. The timing of that is entirely up to you. Cancer truly is a journey, one with highs, lows and unpredictable twists and turns along the way. It also can be a journey that ignites growth, builds strength and helps everyone affected by it to reflect on what is most important to them.
On the journey, remember these important points:
NOTE: d to You aren’t expecte or know everything…tter. anything for that ma is Your medical team in, pla always there to ex WER answer, and RE-ANSntinue co any questions you to have.
• Balance is important. • You’re not alone. There are many others who are going through the same process and many who have already done so. • Knowledge is power. Learn as much as you can and seek out resources to help you. • Dwelling in the past or any health decisions you made will on take away from energy today NOTE: Remember to put nt those who you wa ur yo to have access to on medical records your HIPPA release form.
What to ask
“Just do it,” has a new dimension when faced with a life-changing cancer diagnosis but that’s what you do when fate takes an unwelcome turn. The help and support of a loving caregiver, taking one day at a time and making the most of it helps to make things manageable. The big picture seems like a huge mountain to climb but small steps forward will make the goal of resuming a normal life a possibly. Have faith in your own abilities and those of your professional medical team to achieve a future that is cancer free. -Michael and Margaret Kierst
Asking your doctor questions is an important part of managing your care. Your specific questions will be based on your unique situation. They may change over time. QUESTIONS ABOUT A DOCTOR’S EXPERIENCE: • Have you ever cared for other people with my type of cancer? Should I get a referral to someone with more of a specialty? • What have been the results for these people? Did they have a similar diagnosis? • Do you work with a multidisciplinary team? Who are they and what are their specialties? QUESTIONS ABOUT YOUR DIAGNOSIS: • What type of cancer do I have? • Where is it located? Has it spread? • 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? • How many pancreatic surgeries have you performed? How many in the past year? • How many pancreatic surgeries are performed at your hospital every year? • What are the possible complications of the surgery? • How long should I expect to be in the hospital recovering? • Would you be able to recommend another experienced surgeon for a second opinion? 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? At other local hospitals? • What are the potential benefits and risks of each of my treatment options? • Please explain the medications being prescribed for me. What does each one do? • What type of blood tests, scans or other tests will I need during my treatment? How often? • What is the expected timeline for my treatment? How soon will I begin it? Where? QUESTIONS ABOUT SIDE EFFECTS: • What are the potential side effects (short-term and long-term)of my treatment options? How likely are they to occur? • How can I expect to feel during the treatment? And how can I keep myself as healthy as possible? • What medication(s) will be prescribed to help manage my side effects? Do these medications have additional side effects? • What resources and people should I reach out to right now, and it what order? • How can I contact you in case of an emergency or if I have further concerns? 2016 C.A.R.E.
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QUESTIONS ABOUT DIET: • What lifestyle choices should I begin to make right now? • Do I need to change or modify my diet? • Do you have a dietitian or nutritionist that you recommend? 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 are available for me and my family? • Who can I speak with about my financial and/or insurance concerns? • Who can help me navigate the medical system? Is there an oncology social worker or patient navigator available at this hospital? QUESTIONS TO ASK YOURSELF: • Does the doctor seem interested in my questions? Is he/she easy to communicate with? • Did I get enough time with the doctor to answer all of my questions? • Do I feel comfortable with the doctor and his/her recommendations? • Will I have access to a professional if I have any questions or concerns while being treated? • Is the doctor open to me seeking a second opinion? Should I?
Making moves and committing to optimism
TIPS FROM THOSE WHO KNOW:
• Look at all your treatment options, including clinical trials. • Utilize the patient advocate at your cancer center. • Take a family member or a trusted friend to your appointments & have them take notes. They can help explain what’s happening. • See a therapist if you need to or attend a support group. • Talk to a survivor because he or she will give you hope. • Throw pity party—it’s okay to cry. “I got mad at people. I cried, I got mad at God.” • Talking to a spiritual leader. My priest helped me a lot. • Numbers are for doctors. Let nothing determine if you’re going to have a good day or not, you determine that • Can’t get stuck on that numbers wheel-spinning around over prognosis or stage. • Take bite-sized tastes of things, tackling things one thing at a time. • Recognize that all can change at a spin of a dime • I’ve never said “why me” I’ve said- “why not me” –cancer doesn’t discriminate. • Nothing can determine if I’m going to have a good day or a bad day…it’s on me. • The cancer battle is a marathon....not a 50 yard dash & you have to take it one day at a time, and one treatment at a time. • You can’t always control your feelings, but you can set a personal goal to manage them in a positive way. (Based on testimonies of those affected by cancer) 2016 C.A.R.E.
“I had been having lower back pain, so my doctor suggested I get an MRI. As I was filling out the form, I noticed they offered digital breast exams. I thought, “Digital – it won’t hurt!” I hadn’t had a mammogram for a few years, so I checked off that I wanted a mammogram as well. On January 28, 2008, I received a call from the imaging center asking me back for more tests. I assumed it was regarding my back pain. When I went in, they took approx 10 more digital pictures of my right breast, every angle imaginable. After the radiologist examined them, they said I needed to have a biopsy. Luckily there was a cancellation for that afternoon and I was able to do it the same day. On Friday, February 1, 2008, I was in a meeting and received a call from Dr. Larusso at 1 p.m. giving me the news that my biopsy was positive. I silently vowed that I would be one of the survivors, I went back in to the meeting and didn’t mention the news to anyone. Later that evening, I had a dinner event and once again kept it to myself. I decided to keep the news to myself until I could share my results with my husband in private when we got home. I also made a decision that I wasn’t going to let my disease change my naturally optimistic disposition. Regardless as to what the treatment was going to throw at my physical being, I intended to be strong throughout my treatment and recovery, and above all else…stay positive.” –MARY HELEN
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sk questions about anything you don’t understand, especially their diagnosis, the stage of the cancer, and the treatment plan.”
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~ J ESS QUIRING, AMERICAN CANCER SOCIET Y PATIENT NAVIGATOR
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Exploring your options
Upon diagnosis, time flies by so quickly and it often feels like you are going through motions. Take a step back early in the journey and make a conscious effort to decide on what the right path for YOU is. How you get through treatment and how you choose to live your life, while also living with cancer, is such an individual path. Talking with your physician, making sure you understand the stage of your cancer and being able to ask the uncomfortable questions is important. Doctors are experts in many things and they can offer you advice, but ultimately you have choices about what you do or don’t do. You have the right to say no to any test or treatment at any time.
Getting a second opinion
At some point during your treatment, you may want to talk with another doctor. This is your body…your life…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 most doctors are comfortable with the request. Try saying: “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?” You can also find the new doctor on your own. Once you have decided who you will see, ask doctor’s office for: your medical records, original X-rays, and all test results. You can have records sent or you can retrieve and take them to the second doctor yourself.
Clinical trials
A clinical trial tries to answer scientific questions and find better ways to prevent, treat or diagnose cancer. They test the safety and effectiveness of new drugs, new drug doses, new approaches to treatments. If this interests you be sure to ask about complete details, including risks and benefits. Can treat from initial diagnoses to progressed cancer.
Pros:
Cons:
• Another personal patient navigator focused on your treatment • Enhances cancer treatments • Improves quality of life • Contributes to science • Chance to minimize side effects
• Extensive eligibility & screening process • Perception that you’re a “guinea pig” • You may get a placebo or side effects • The study might be time consuming
FIND CLINICAL TRIALS IN NEW MEXICO THROUGH NEW MEXICO CANCER CARE ALLIANCE: WWW.NMCCA.ORG
Contact at CHRISTUS St. V/incent Cancer Center: Olivia Sloan, RN/MPH, Clinical Research 505-913-8933 2016 C.A.R.E.
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NOTE: nt CHRISTUS St. VinceM Cancer Center/N tes Cancer Care Associals currently has tria g, in Santa Fe for; lun al ren colorectal, breast, er and prostate canc
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ou are not your cancer and it cannot define you. YOU define cancer and what it will mean for you.
~ CANCER SURVIVOR
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Life with cancer
Dealing with emotions
Every emotion is a normal one. Denial, anger, fear, stress and anxiety, depression, sadness, guilt and loneliness are all normal feelings. So are feelings of hope, gratitude and optimism. All of these feelings can come and go, sometimes all in one day. It’s okay 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. – JAN 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 important. A person with cancer is still a person. Hold onto hope but be realistic about the future. Parts of every day can be a gift. You might never become comfortable with uttering or focusing on the words, “I have cancer”, and you don’t have to. The key is to try to understand the cards you’ve been dealt, and make the best of them. How you do this is different for everyone. Allow yourself to feel the spectrum of emotions that naturally come with the condition. Remember there is NO right or wrong way to feel or behave. Don’t judge yourself for your feelings. It’s okay to NOT be okay all the time.
Be true to your feelings NOTE: some During treatment, r than tte days you’ll feel be ntage others. Take adva ys of those good da el y lev where your energ d do is manageable an joy! something you en
Some people pretend to be cheerful when they aren’t. Some people want to show the world they can handle cancer on their own, but this might keep them from getting needed help. 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. If you just want to vent and not receive advice, be clear. If you’re looking for specific help, be clear about that too.
“If you’re going to hurt, you might as well be hurting doing something you enjoy. Whether it’s taking a walk, talking on the phone, spending time with your children and grandkids” – LOIS 2016 C.A.R.E.
Living with cancer is a lot of managing side effects, being positive, and staying active. Overall, mnay people are still able to lead fll active lives. – ONCOLOGY NURSE
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Living with a “new normal” Cancer treatment can be tiring and is almost always stressful, which may mean: • Altered routines • Changed roles and duties in your family • Strained or strengthened relationships • Challenges in dealing with money and insurance • Living with someone else for a while • Needing help with daily activities
NOTE: During treatment, l some days you’ll fee . Take better than others good advantage of those ergy days where your en le and level is manageab enjoy! do something you
You can still do things before cancer, aka “BC”– they might just look a little different. 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 such as: Listening to music Reading books and magazines that interest you Taking up a creative outlet, such as crafts or music Starting a new physical activity (with permission from your medical team) Watching fun or uplifting videos and movies online, or catching up on sports Writing your thoughts in a journal Praying or meditating Reconnecting or catching up with old friends Painting walls in your house Taking walks“ Pets Crafting Cooking Scrapbooking
Basics
• Find the best medical team for you. Ask for referrals and choose those who can help you the most. • Ask questions, seek information and take your time with big decisions. • Consider joining a support group. • Take good care of your body and be open to something new. • Treat yourself well. • Celebrate triumphs, no matter how small they may seem. Find any excuse to reward yourself with anything that will make your life better. “When you are sick, The other “C” word: Control it is time for your Those living with cancer and their caregivers oftentimes loved ones to step feel a complete loss of control or powerlessness over up and take care of what is so directly impacting them. it can feel like some you. We need to give invisible force is running things. It is common to also ourselves permission often feel isolated among friends and loved ones; try as to let go of our many they might, those who have not been through a similar obligations—to experience simply can’t understand what the issues that family, work, one endures in the face of cancer. volunteerism, social activities—and focus For many, the most difficult but most important thing they on your own healing. – HOLLIS can do is—to the extent that it’s possible—stop taking care of WALKER, FACILITATOR OF THE CANCER others and be okay with relinquishing control. FOUNDATION FOR NEW MEXICO’S SUPPORT GROUP, “EMPOWERING OURSELVES TO HEAL”/CANCER SURVIVOR 2016 C.A.R.E.
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Using humor as medicine Everyone knows that cancer is a serious disease. Much of the conversations surrounding the diagnosis may have a serious tone. If you feel comfortable, bring a sense of humor into the situation and do whatever you can to make you or someone else smile!
“My last chemo session was New Years weekend. Might as well make it fun. Mooned all the nurses that night!” – CANCER SURVIVOR
Nothing can prepare you for what is coming. Every person reacts differently to treatment and you just have to go through it to see how your body will tolerate it. “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 can all aspire to truly embrace every day.” – C. PADILLA You have to find your own way through your diagnosis, walk your own path. You will go through loss, you will grieve, get angry, feel depressed. You’ll discover things about yourself that you never knew. How incredibly strong you can be, how incredibly tired you can feel. Because of all this, there will be a deeper meaning and value to your journey. Dear our loved ones we care for, We don’t mind the things we do for you. You are NOT a burden. We WILL get tired. We may get frustrated, but not at you. We don’t always know the balance of what you WANT to do and what you are forcing yourself to do—please help communicate to us the difference. You are our lives right now, and we’ve CHOSEN that because we WANT to. We need you to take care of the not so fun “planning” stuff--know that we feel it is on US if you don’t have these things outlined. Know that we are playing off of you a bit. We will have trouble talking about anything but you. YOU are our first instinct. It helps US to know that we are helping you and your lives…so let us. It is about YOU right now, and that’s ok. –Your caregivers
2016 C.A.R.E.
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TIPS FROM THOSE WHO KNOW • Don’t Google anything! You want credible information? Talk to your doctor. • Give assignments for people to help you. Be specific. • I truly believe being as positive as you can and having a strong faith kept me going through some very strong treatments. • Be strong and believe that they can get through their tough times • Your frame of mind needs to change- and 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/going through vs. you. Every case is specific and catered to each individual. Comparing will hinder 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 lay in bed. • I also have a little book of prayers and I had special prayers I said every day which brought me comfort. • A saying? “Let go and let God!” • Keep fighting • People aren’t mind readers. You have to tell people what you need • My faith helped me get through and after my pity party get through • Learn about your disease. You need to go take those tests and do the things. You need to be your own advocate. • It’s okay to get rid of all of those materialistic things. • Sometimes 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 to get up and move around if you can. • Give yourself pep talks if you need. • Know your limitations. SO what if you have to walk instead of running. Just do things you enjoy. • There is a person out there who will help you, so take someone to your appointments. • Be okay to accept help!!! It makes others feel useful and it relieves stress on you. Someone wants to bring dinner? Clean your house…LET THEM! • 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. • Don’t lose hope & find blessings in your daily life. • Surround yourself with positive people. • Regardless of if you are feeling bad---enjoy the fact that you still can shower. • Even if you are feeling crummy, get up and do the things you still enjoy. • 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. • 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. (Based on testimonies of those affected by cancer)
2016 C.A.R.E.
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hen our hair falls out, when we lose our appetite, our energy, our willingness to get out of bed, we need to W recognize and appreciate that the treatment is doing what it is supposed to be doing.
– JESSE ALLEN, FORMER PSYCHOTHERAPIST AND CO-AUTHOR OF “KISS THE GIRLS AND SAY GOODBYE: GET TING ROUGH BREAST CANCER AS A COUPLE”
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Tackling treatment related side-effects
When it comes to treatment for cancer, the bright side is that it strives to destroy the harmful, the not-so-bright side is that in that there may be some physical repercussions… side effects. There are always two sides to a coin, good and bad to every situation, and where there is a left, there is a right. With that, when it comes to treatment for cancer, it too, has a multi-faceted quality. Although its intent is to ultimately help relieve you of cancer, in some form, in order to feel better, it may also give you some not-so-good feelings throughout that process. These are known as side effects.
Side effects can be a result of: • Cancer
• Surgery
• Chemotherapy
NOTE: Remember that chemo is your friend- it is in there to kill the “bad guy.”
• Radiation
Radiation vs Chemo related side effects:
Radiation treatments are much like X-rays and are not painful. The most common side effects are fatigue and skin irritation in the local area of treatment.
Every drug has different side effects and treats people differently.
Chemo side effects are more systemic. Since chemo can damage the blood-making cells in the bone marrow, patients may have low blood cell counts. This can 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) • Anemia (from low red blood cell counts), which can cause tiredness, shortness of breath, pale skin, and other symptoms CHRISTUS St. Vincent Patients: Report serious symptoms to: Mon-Fri, 8am-5pm Nurse Triage 505-913-8919 Evenings and Weekends Doctor on call 505-913-8900
CALL 9-1-1 IF YOU HAVE:
• Chest Pain or pressure • Seizure • You can’t talk and breathe at the same time • Large amount of blood in vomit, or stool • Fainting or loss of consciousness
AVOID INFECTION BY: • Washing your hands often: before you cook/eat, after restroom use, being in a public place. • Brushing your teeth 2x a day with a very soft toothbrush • Keeping area around catheter clean and dry (if applicable) • Staying away from those who are sick • Washing raw fruits and vegetables very well • Cooking meat well • Staying away from those with recent vaccines • Avoiding pet related clean ups • Trying to avoid cuts • Not squeezing pimples • Cleaning yourself thoroughly after restroom use • Removing band aids after a blood/port draw
2016 C.A.R.E.
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IF YOU HAVE:
A. Loss of Hair
B. Chemo Brain
C. Insomnia
F. Mouth Sores/Dry Mouth
E. Nausea & Vomiting
D. Decreased Muscles/Motor Skills
I. Skin Irritation/Rash H. Digestive Distress
G. Loss of Appetite
K. Sexual Dysfunction
L. Infertility
J. Neuropathy (Numb Hands/Feet)
M. Effect on the Bones O. Anxiety & Depression and P. Overall Fatigue
N. Edema (Swollen Feet and Hands)
TRY THIS:
A.
Wigs, hats, scarves, beanies, maintaining a short style haircut.
B.
~See Combat Fatigue & Chemo Brain on pgs 30 and 31
C.
Avoid caffeine, alcohol, and tobacco. Exercise, start a bed time routine (reading from a book), and set daytime sleep restrictions.
D. Exercise the body and the mind (mind strengthening activities). E.
A bland diet, small frequent meals, Compazine pills, Ativan—or ask doctor for Zofran/Emend.
F.
Rinse mouth frequently (1 cup water, 1tsp 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 2-4x a day.
G.
Control other side effects that contribute to poor eating. Eat small frequent meals, drink water, and get creative with your diet. ~See Nutrition During Treatment on pgs 30-32~
H. Drink water. Avoid dehydration, caffeine, alcohol fatty/acidic foods. Eat more fiber, take antidiarrheal/laxative medicines (Immodium Ad or Senekot S, depending on distress). I.
Use mild unscented soaps, avoid sun exposure, and keep skin moisturized.
J.
Avoid contact with hot water/direct, and unnecessary friction. Use gentle moisturizers, elevate hands/ feet, and apply cool compresses.
K.
Talk with doctor about safe medications to help increase sexual desire.
L.
Talk with doctor to learn options.
M. Drink calcium, slight exercise, ask doctor for medications. N. Reduce salt. Wear compression devices, diuretics, exercise, and elevate affected area. O. Try to recognize fear and specific cause, talk with your doctor, and practice relaxation. P.
~See Combat Fatigue & Chemo Brain on pgs 28 and 29~ 2016 C.A.R.E.
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Combat fatigue & “chemo brain”
Fatigue is one of the most common and distressing side effects of cancer and its treatment, and the so-called “chemo brain” is part of the fatigue. It’s a short-term effect and 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 include: • Short-term memory lapse • Trouble concentrating or focusing • Short attention span • Trouble remembering certain words or names, and trouble finishing sentences. • Trouble multi-tasking, like answering the phone while cooking • Slower thinking and processing • Both overall tiredness and chemo brain can change throughout treatment, with good days alternating with bad days. This is normal and expected.
For
energy and
chemo brain:
• Write things down. • Let others help you. • Prioritize your to-do list. • Reduce work time if you have to. • Exercise your brain, do word puzzles, learn something new. • Get 15-30 minutes of light exercise each day. • Get plenty of rest, including at least 8 hours a night, plus naps. • Drink 8 cups of water each day and have 5 or 6 small meals or snacks. • Eat lots of fresh fruits, vegetables and healthy protein and limit processed food. • Give yourself permission to focus on one thing at a time. • Consider relaxation techniques such as meditation. • Try to keep a regular schedule – routine helps.
NOTE: a Continuously havetes notebook/sticky noite around to help wr emo down reminders. Chsarily brain doesn’t necest does. end when treatmenect and It is a long-time eff rs may last for yea
Managing and treating pain
• Pain isn’t an inevitable part of cancer, but it is a real possibility. • Remember — 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. • Ask with your doctor, nurse or pharmacist about how to manage their “as needed” dosages and about any concerns you have about side effects and the possibilities of becoming dependent on pain medication. • It’s easier to control pain right when it starts rather than waiting until it becomes severe. There’s no need to “tough it out.”
2016 C.A.R.E.
NOTE: s There are nutritiou snacks for those t en undergoing treatm and families, in the CHRISTUS Cancer Center. 28
What to expect in the chemo treatment room
Ideas on what to take on trips to chemo
• Ask your doctor how long it will take, as it varies quite a bit. You can ask a friend to visit or stay with you the entire time. • The room will have friendly volunteers offering you and your family snacks, warm blankets and pillows. • You’ll be resting in a reclining chair while you receive treatment. You’ll also be able to experience music and pet therapy with specially trained service dogs, or you can sleep, read, play games, write, use your laptop or do quiet activities that help you relax. “Bring everything. Bring nothing. You will never truly feel prepared.” – Dana Lundell
NOTE: The Christus St. Vincent Cancer e Center provides fre wi-fi for all patients s and their familie
There are a lot of names, dates and details to remember when you’re navigating cancer treatment. Get a NOTEBOOK and keep the most important facts in one place. Update with current medications. Jot down how you feel. Write down questions for the medical professional you will see. TAKE TO EVERY APPOINTMENT.
reading material
phone/tablet
laptop notes/cards to games to play with favorite pillow family/friends & blanket write to people
or anything that will either help you feel productive or relaxed during that time notebook & pen to write down thoughts to relay to your medical team
If you have an iPhone/iPad, download the “Pill Monitor APP” to get reminders of when to take medication. Keep track of your pain, using the commonly used “pain scale” of 1 to 10. This is what most doctors and nurses are most familiar with, so this will help them know how best to assist you. Be specific about where it hurts and how much it hurts from 1(not much at all) to 10 (extreme pain). My Oncologist’s
r’s name
My Primary Docto
tioner’s name
My Nurse Practi
The names of the I’m taking these
name
o Room
nurses in the Chem medications
Medication name I take this for
mg once a day)
and dosage (i.e. 50
or it is “as needed” ns or ER visits
eries/hospitalizatio
Dates of all surg
Recent surgeries, dates
hospitalizations,
ER visits details
...
WHEN I NEED TO
edule treatment,
Schedule or re-sch NOTE: Ensure that all important phone and numbers are savedyours properly named in rs and your caregive in d phone/have poste the house.
headphones
and
I’ll call
scription, I’ll call
To Check on a pre
I’ve had: List of the scans (PET, CAT, BONE, etc) Date(s) Name of Scan dates Dates atments on these I’ve had chemo tre remember include or details I need to Other names, dates
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F
ood is medicine. It’s okay to eat what feels good. If chocolate pudding and a baked potato sounds good–eat it.” ~CANCER SURVIVOR
The
ey urn
Jo
.. . n o t a E
What’s on the menu? Protein such as dairy, fish, poultry, lean red meat, eggs, peas and lentils helps heal tissues and fight infection.
Vegetables are carbs and should fill half your plate. Select Whole Grains for good health.
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.
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.
Fresh fruits are carbs and should be included in meal planning.
Dairy can include low-fat milk and cheese.
BE SURE TO DRINK WATER
is necessary for every cell in your body. Drink between meals and aim for at least 8 glasses of fluid in water, fresh fruit or vegetable juice, soups and herbal teas each day. Helps with function of organs!
Use smaller plates to eat your meals from. A large plate, full of food, may seem overwhelming, especially if you are tired. Eat with plastic utensils if treatment has left a foreign/ metallic taste in your mouth.
Before, during and after treatment
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 the effects.
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NOTE: on yourself if the Don’t be too hard atment make it tre of side effects ment with your hard to eat. Experi er with your ov it k tal foods and ep your energy medical team. To keeat every few el, ke on an even it until you feel hours and don’t walk after you eat wa ort hungry. A sh ion and give will help your digest ergy. en re mo u yo
Food is your friend
Create a realistic yet nutritious daily meal plan for yourself like this: BREAKFAST
SNACK
Low fat yogurt, or cereal with fat free milk, or whip cream on a waffle
Cup of pudding, some gelatin, or a piece of fresh fruit
LUNCH
SNACK
Egg salad sandwich, macaroni and cheese, or a hearty soup
Small bag of trail mix, mu n, crackers, piece of bread with peanut butter
• Have snacks around–peanuts, cheeseballs, high calorie snacks –rather than waiting until MEAL TIME • Kick your heart-healthy diet during treatment. If shakes are the only thing you can eat, go for it. You can go back to the heart healthy diet after treatment.
CALORIES = ENERGY PROTEIN = REPAIR DAMAGED CELLS MOUTH SORES LOW BLOOD CELL COUNT NEW FOOD CHOICES WEIGHT CHANGES SWEET TOOTH? DENTAL HEALTH JOY OF EATING
DINNER Baked fish, lean red meat, baked potato with butter, peas or a casserole, or stew
“During treatment it feels good If eating 3 popsicles or pancakes or mashed potatoes is all you can get down than eat it.” – CANCER SURVIVOR
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 your immune system (white blood cell count) is down be extra careful about cooking food thoroughly and making sure the kitchen is sanitary. Don’t be afraid to try new foods or foods you rarely eat. Cancer treatments affect your sense of taste. Although small weight changes are normal, do your best to stay at a healthy weight and keep physically active. Have a sweet tooth? Add jelly and honey to breads and crackers, jam on fruit, or ice cream as a topping on cakes. 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. Try not to mistake the joy of eating with nourishment. Make sure you are eating delicious, balanced meals, with just the occasional indulgent treat.
FOR DRY MOUTH
FOR THICK SALIVA
• Brush your teeth after each meal/bedtime • Rinse your mouth (don’t swallow) with salt an baking soda 4-6x a day (1/2 tsp salt, 1⁄2 tsp baking soda, cup of warm water) • Use a cool mist humidifier to moisten room air • Moisten foods with broth, sauces, butter, dressings and avoid dry foods • Suck on ice, popsicles, or lemon drops
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.) • Taking caution with milk products • Keeping your mouth clean by rinsing with baking soda mix
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Certain foods can help alleviate some side effects from treatments: 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 bowl function damaged tissues/brain health and immune cells anxiety level sleep quality red blood production blood pressure/excess fluid peripheral neuropathy constipation tissue repair/wound healing protein level white blood cell level
“During cancer treatment, you may not always feel your best. Wholesome nutrition is key for nourishing your body, keeping up your strength, and for a quicker recovery. Choose foods that make you feel good, and that you are going to enjoy. In the end, you recover stronger and will be more nourished.” – ELIZABETH JARAMILLO-LOPEZ, RD, LD OUTPATIENT CLINICAL DIETITIAN CHRISTUS ST. VINCENT
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COALITION JOINS CHOOSING WISELY TEAM The New Mexico Coalition for Healthcare Value (NMCHCV) is joining forces with Consumer Reports to educate providers and patients about their healthcare options, through the Choosing Wisely® program. Choosing Wisely promotes wise choices by clinicians and patients to improve healthcare outcomes, provides patient-centered care that avoids unnecessary and even harmful interventions and reduces the rapidly-expanding costs of the healthcare system. Choosing Wisely: • Was developed by more than 70 national and state medical specialty societies • Includes over 60 consumer partners -AARP, National Business Group on Health and Wikipedia • Reaches millions of consumers nationwide through consumer and advocacy partners • Reflects the goals, vision and mission of the Coalition It’s time for consumers to engage in important conversations about the overuse or misuse of medical tests and procedures that provide little benefit. By using Choosing Wisely as a framework, consumers can have smart conversations with their health care providers about care that is truly necessary. To learn more about the Coalition contact them at www.NMHealthcarevalue.org or at (505-998-9735.
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T
ake it a day at a time and believe that tomorrow will be better.”
our J e
Th
. . . g n i t h eep fig
ney
K
Navigating a relapse
A “second round” of cancer, whether a new type or the same kind, is “ I want to something that can never be predicted. Sometimes it happens. It is be a visual natural to feel fearful, angry or hopeless if your cancer comes back. for people to Talk to your loved ones about your feelings. Your doctor will talk see that there with you about different treatment options and how effective each is life beyond one is likely to be. Much like the first time, one wants to ask similiar those hard questions about the plan of action. Be sure you understand the goal days” of each treatment you are taking. Is it to control the cancer? Is it to – BERNADETTE cure? Is it to make you more comfortable? You might also decide to get a second opinion this time. Once again, discuss all choices with your nurse or doctor, with members of your support group, and especially with members of your family. Only you can make the best decision for you.
“Why can’t I have the same treatment for my recurrence as I did for my first cancer? What are the chances of the cancer coming back again after this treatment?
Some people do end up having some of the same types of treatment that they had for their first bout with cancer. Also, what the future will look like with cancer at ANY stage or time is hard to predict. Treatment decisions and factors of reoccurrence are based on: • Type of cancer • When it recurs • Where it recurs • How much it has spread • Your overall health • Your personal values and wishes ofr treatment• The cancer’s aggressiveness • Your age • length of time between the original diagnosis and recurrence • how well you tolerate treatment
“I thought I was done with this...how am I supposed to deal with it again?
Although easier said than done, try not to panic when you learn about the recurrence.Talk to your doctor if you are worried about waiting to start treatment. You need to feel comfortable with this course of action. Continue to fight and focus on living: • Make conscious choices about how you spend your time and whom you spend it with. • Create more special time with ones love. • Take classes in things you’ve always wanted to. • Start an organization, or create the tools to make a meaningful career change if you want. • Document your experience and lessons using writing, art, photos or any creative outlet. 2016 C.A.R.E.
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NOTE: t You know more. Buuld don’t feel like you shome “be used to this.” So and emotions will returnurself that’s OK . Allow yo hout to feel them again wit frustration.
“
S
ure I have scars. But they are my scars and they show that I fought the battle and won the battle” ~ BERNADET TE SURVIVOR
y rne
Jou e Th
.. . n o e v i Thr
Surviving and thriving
“I’m a survivor.”
These 3 words make a strong statement, and mean different things to different people. Some people use the term 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. 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.
“I was confused and scared. I wasn’t ready to be done. I was scared not to see my doctor anymore. I didn’t believe that I was cancer-free.” – CANCER SURVIVOR
The most important aspect of surviving is doing one’s best to thrive regardless of status in the journey.
THE “NOW WHAT?” Phase: What to expect
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.
“I miss my appointments”
Bernadette and Steve Romero in front Okay, the appointments, per say, might not be something that of a tree found damaged at the 9/11 a person longs for once they have relinquished the necessity. site and taken to a New York park, However, the confidence that someone is consistently monitoring replanted, and nursed back to health. It is now stands 30 feet tall sprouting their health and the overwhelming sense of community from new branches and flowers and is places like their chemotherapy infusions are both factors that known as “The Survivor Tree” may contribute to one “missing” certain aspects of their previous healthcare. It is completely normal to feel uneasy as things “slow down” in terms of your care.
“When I heard the news that I was in “remission,” that was not acceptable. The “R” word was not what I wanted to hear. I wanted to hear the BIG “C” word -- CURED! As time has gone by, I now comprehend why I was only told, remission. It’s been 18 years since those sickly days and I still have not been told I’m cured. But in my positive thoughts, I believe “I AM CURED!” – CAROLYN
Use the time without treatment to relax and recuperate from what your body went through. It is natural to strive to get back to your life “BC” (before cancer) right away. Be patient with yourself. You might not get completely “back to normal” but you will create a “newer normal”…one without treatment. 2016 C.A.R.E.
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“The cancer was in my chest so it was basically the same • Once again-- another “new normal.” as having openheart surgery Remember that your life will never be the except they left my heart and same. took out “Maurice.” (I named • The time it takes for your hair to grow back my tumor Maurice the Mass!). depends on the person. All-in-all I had three surgeons • It could be up to a year before you start for the one surgery, so honestly, feeling better and some side effects are I expected to hear the news that chronic. my scans were clear.” – ROB • You still must be commitment to seeing The Petersons celebrating your doctor and getting imaging done, as a successful surgery needed. • Focusing on preventative care is important, since your cancer (relapse or new) susceptibility is higher. • Paranoia is common.
QUICK FACTS:
“Even though in the back of your head, you think that maybe it’s not over, and that someday you could be there again, it is over now, and if, “if ” you have to … you can cross that bridge if you get to it, except you will face it knowing how strong you, so live each day in that 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” – CANCER SURVIVOR
Friendship from the fight: “Paula’s and my friendship is something extremely special. Unfortunately, it took an illness to genuinely cherish our friendship. Paula has to be the strongest woman I know. Our friendship is strong as ever.” – CAROLYN NOTE: e to It may take a long tim- after ain ag dy bo ur yo st tru patient. it betrayed you. Be switch Cancer isn’t a light d on you can turn off an ons and your body/emotily. will act according
“Carolyn and I have this incredible strong friendship. We are each other’s rock. Carolyn is a very special person I am truly blessed to have in my life.”– PAULA
It’s normal to feel depressed when activities and attention is suddenly taken away. “We will see you in three months”. 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 than those of kids on their first day of kindergarten or college. The independence can be a scary thing and that’s okay to acknowledge.
“CHECK-UP ANXIETY”
“Stay in ‘survival mode’ and get up each day wanting to be a better person than you were yesterday…sick or notthat’s the goal.” – DONNA
It happens. With every piece of bloodwork, every test, every scan… there may be an innate fear of cancer coming back. As time goes on- the restlessness may get better. Accept that you (and loved ones) may be irritable for many years. 2016 C.A.R.E.
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Creating your personal survivorship care plan
The Institute of Medicine suggests working with your medical team to create a personal care plan once you’ve completed cancer treatment. The plan should summarize such things as: • Potential late side effects, their symptoms and treatment • Recommendations for regular cancer screening and follow-up care • Common psychological and social effects NOTE: • Financial issues Be open to lifestyle • Recommendations for a healthy lifestyle changes and be sure to keep up • Genetic counseling h your follow-up wit • Effective prevention options appointments. They • A list of support resources are important.
Resources for life after cancer
You can start developing your personal Survivorship Care Plan with the guidelines at Resources for Life After Cancer Cancer Services of New Mexico www.livestrongcareplan.org Central United Methodist Church, 201 University Blvd. NE, Albuquerque, 87106 Fifth Annual Long-Term Effects of Cancer Survivorship Conference Breakout sessions on Fatigue/ Sleep Issues, Lymphedema, Creative Movement/Visual Art Interactive, End of Life Planning and Support March 5th, 8:30 a.m.-4:30 p.m. Contact Patricia Torn, 505-307-3414, ptorn@comcast. com Cancer Support Now Helpline 505-255-0405 or 855-955-3500 American Cancer Society 800-227-2345
Presbyterian Kaseman Hospital | Albuquerque Presbyterian Rust Medical Center | Rio Rancho
phs.org
OPENING SPRING 2016
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C
ancer 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.
~ DONNA
The
. . . e d i s Bright
y rne
Jou
Cancer’s “other” side effects
Cancer can be a devastating blow on so many levels to the one living it and those around them. Although it is tough to always see the glass half full when dealing with cancer- there are definite silver linings and perspectives that a diagnosis can provide. Try to re-frame the situation you have in front of you and make this chapter of your life meaningful. How can you transform this experience into something meaningful for you? What takeaways can you gain? What new dream or goal can you undertake? What blessings can you now acknowledge? “I’m not mad at cancer. “One thing that our patients don’t realize is that we appreciate THEM. Through witnessing their cancer experience, they change our outlook on how we think of things and how we appreciate parts of our lives—and how fragile life is and how grateful they make us.” – Jackie Benally, RN “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.” – Carolyn
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. – M. P.
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Cancer isn’t taking my dad or anything else from me. No, not at all. For, cancer is providing me with something precious. It is giving me time with him. I’ve been 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 ‘til one or both of us falls asleep… and valuing every minute together so much more. 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 these special moments… these valuable memories…and this extra intentional time I’m getting to have with him. Time I wouldn’t give back for absolutely anything in the world.” – K. T.
WHAT IF YOU COULDN’T AFFORD TO GET TO YOUR CANCER TREATMENTS?
The costs of a cancer diagnosis are more than just medical. For countless northern New Mexicans, the costs of getting to treatment are just not affordable. So they may not get treatment at all. That’s where the Cancer Foundation for New Mexico steps in. We help patients who do not have the resources to pay for transportation, lodging, and meals so they can access treatment. We also offer support groups to all patients and caregivers to help them through this journey. No patient who qualifies for our help is turned away. To apply for help or to donate, visit www.cffnm.org or call 505-955-7931, ext. 3
TOGETHER, WE CAN HELP SAVE LIVES 2016 C.A.R.E.
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Y
ou are never alone.”
rces
..
t. u o h c a Re
esou
R
~ CANCER ADVOCATE
The driving force behind cancer patients. You.
Being your own advocate
Not everyone has someone in their life that they would identify as their “caregiver.” You might have different people attend appointments with you, or you might be navigating this seemingly on your own. Know that you are not alone in your cancer journey and have a plethora of people who work to help lighten your load and support you through your challenges.
Meet Karen Gano, LCSW Oncology Social Worker
**FREE** to all those associated with the CHRISTUS St. Vincent Cancer Center At the start of your diagnosis, during treatment, at the point of a possible relapse, or during any crisis in your life…Karen is there for you. She will act as the liaison to get connected with the various programs and services available to you, based on your individual experience. With 20+ years of experience she knows how to create a safety net for you to depend on and networks to connect with. She has oftentimes attended doctor’s visits for those without a caregiver. She has a passion for social work, patients and families. She recognizes that everybody’s story is different, and will work with you to determine what resources would be best suited for your life. Let your doctors take care of your physical being. Let Karen take care of your emotional concerns, counseling, spiritual care and crisis management. Karen Gano, LCSW 505.913.5731 | Karen.gano@stvin.org
Every day, American Cancer Society Road To Recovery® volunteers provide free rides to and from treatment for those with cancer in Santa Fe. And every day, we need more drivers.
For more information, visit cancer.org/drive or contact Shirelle Besse at shirelle.besse@cancer.org or 262-6016.
“I’m here for you. I will never tell you what to do. I believe in your right of determination. I will explore things with you and make recommendations. Acknowledging what’s important to YOU. I’m here to support and empower you. I am passionate about providing you with helpful tools and meaningful resources so that you can go on happily with your lives.” – KAREN 2016 C.A.R.E.
cancer.org | 1.800.227.2345
©2008 American Cancer Society, Inc. No. 030420 Rev. 2/16
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nline sites help me keep connected and provides endless information about my disease.” ~ CANCER SURVIVOR
rces
sou
Re
... n o g o L
Make a connection
To not feel alone, all you need is an Internet connection and a laptop, personal computer, tablet or smartphone. If you don’t have electronics, almost all local libraries offer free computer time. Check out these networks to engage with others and gain tools for yourself! ACS National Cancer Information Center has health care professionals that answer cancer-related questions 7 days a week and 24 hours a day.
ONLINE SUPPORT COMMUNITIES AMERICAN CANCER SOCIETY www. Cancer.org From the home page ->Programs and Services at the bottom of the page, then click on Online Support Communities. WhatNext: Cancer patients, survivors and caregivers can gain firsthand insight into living with cancer and connect with others facing a similar diagnosis. Cancer Survivors Network: Connect with others through a member search, discussion boards, chat rooms and private e-mail. Also, you can create a personal space to share a bio, photos, audio and online journal. Circle Of Sharing: Create a Personal Health Record to help get the information you need about your diagnosis, find resources and share important information with family and friends. I Can Cope Online: Quickly learn important facts and practical tips about cancer and related issues. For anyone with pancreatic cancer THE PANCREATIC CANCER ACTION NETWORK is a nationwide network of people dedicated to working together to advance research, support patients and create hope for those affected by pancreatic cancer. www.pancan.org SUPPORT EMAIL SERIES Subscribe to a series of emails written for patients, survivors, and caregivers. Visit www.cancer.org For anyone with leukemia or lymphoma Our online chats are offered weekly: www.lls.org/chat FREE SEMINARS: Go to www.LosAlamosCouncilOnCancer.org to watch seminars on numerous cancers.
CANCER SUPPORT COMMUNITY: www.cancersuportcommunity.org Online support group led by professionals, offering information on stress management CARING BRIDGE: www.caringbridge.org/ Free personal websites to stay connected to family and friends during illness. Post and receive pictures and messages privately online. DOWNLOAD SKYPE: www.skype.com Free video chatting with loved ones from afar FACEBOOK PAGES TO “LIKE”: • Cancer Support Now • Livestrong • Cancer Support Community Navigate Cancer Foundation • CancerKicker.org Cancer Services of New Mexico • American Cancer Society Cancer Foundation for New Mexico • Pancanalbuquerque FREE VIDEOS: Youtube.com Cancer Survivor Channel Pinterest.com: Cancer Inspirational Videos or Quotes SONGS TO PURCHASE/DOWNLOAD www.apple.com/itunes/music • When Pink Is Just A Color Again • Stand up to Cancer I Run for Life — Melissa Etheridge Fight song-Rachel Platten FREE EDUCATIONAL BOOKS ONLINE: National Cancer Institute: www.cancer.gov/publications TRIAGE CANCER: www.triagecancer.org MORE RESOURCES: • www.Cancer.net • www.caregiving.org • www.caregiveraction.org • www.cancercare.org • www.breastwishesfund.org
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Y
ou are not alone. You might feel like you’re the only person in the world that has these feelings and thoughts. You’re not crazy. Others have the same fears and have felt the same things. KNOW that.” ~ JAN
rces
sou
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..
. k l a t s ’ t Le
Gain support
People attend support groups because they are looking for “fellow travelers,” others who really understand the experience of caring for, loving someone with cancer. Some people reject support groups because they are initially hesitant to talk to a group of strangers about something as personal and heart-wrenching as cancer. Some people are embarrassed that they cannot handle this trauma alone. Know that you aren’t expected to. Cancer support groups are meetings for anyone touched by cancer and they are a good place to talk with others in similar situations. You don’t have to talk–you can sit and listen. Nothing is forced. “When a person first visits our group there is hesitation and fear. No one is ever pushed to share more than is comfortable. I continue to be impressed by how longtime attendees embrace the newcomer, creating a space that is warm, loving and safe. Most new attendees do return.” – RONNI, SUPPORT GROUP LEADER
“I’m grateful for the experience of the group, even when I don’t say much. Sometimes it’s more important to listen than to talk!” – SUPPORT GROUP ATTENDEE
What People Are Saying About Support Groups ”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.” “ I believe it’s essential for a new person to learn immediately that the group is a safe place for sharing their story (including some venting) and listening carefully to others’ stories. The listening teaches them that they are not alone on their journey. “Empowering Ourselves to Heal is open only to women who have or have had cancer. We take turns sharing what is happening in our lives and any concerns we have, and we also do creative expression activities such as writing and collage. And we laugh a lot! The group is confidential, and we are very respectful of the fact that each of us has to find her own path to healing.” –HOLLIS WALKER, FACILITATOR OF THE CANCER FOUNDATION FOR NEW MEXICO’S SUPPORT GROUP FOR WOMEN CALLED EMPOWERING OURSELVES TO HEAL, IS A BREAST CANCER SURVIVOR/ORDAINED INTERFAITH MINISTER AND CHAPLAIN FOR AMBERCARE HOSPICE IN SANTA FE
“This dual love is energizing and uplifting, you know you are loved and that you love.” 2016 C.A.R.E.
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MON
TUE
WED
THU
SAT
Pink Ribbon Advocacy Club Every Monday 1-1:45 p.m. Cathedral Basilica of St. Francis of Assisi, Clare Hall, 131 Cathedral Place, Santa Fe; Questions? Contact group leader Dr. Ana Martinez, 202-474-9141, anaparismd@gmail. com –––
Together – 11 a.m.12:15 p.m. Every Tuesday Cancer Foundation offices, 3005 S. St. Francis Dr., Suite 3B, Santa Fe Caroline Owen, 505-955-7931 ext. 3, caroline@ cffnm.org ––– CanSurvive 1-2:30 p.m. Every Tuesday Cancer Foundation offices, 3005 S. St. Francis Dr., Suite 3B, Santa Fe Caroline Owen, 505-955-7931 ext. 3, caroline@ cffnm.org –––– Leukemia & Lymphoma Society Blood Cancer Support Group – Second and fourth Tuesdays of the month, 2-3:30 p.m. Eileen, 505-428-0670, ej@eileenjoyce.com ––– Surviving Sisters Group – Second and fourth Tuesdays of every month Contact Ms. Fred 505-577-1032 ––– Santa Maria De La Paz Cancer Support Group; First 3 Tuesdays of the month 1:30-2:45 pm Contact Sister Colleen: 505-629-4212
Living with Cancer Every Wednesday, 1:15-2:30 p.m. Cancer Foundation offices, 3005 S. St. Francis Dr., Suite 3B, Santa Fe Caroline Owen, 505-955-7931 ext. 3, caroline@ cffnm.org
Taking Charge Support Group for Blood Cancer Survivors Family and Friends: Group meets 1st Thursday of every month: 7 p.m. – 8:30 p.m. | 3411 Candelaria , suite M in Albuquerque Contact Jamie McDonald MSW at 505-291-2006
Empowering Ourselves to Heal -A monthly workshop for women with cancer. First Saturday of every month, 10 a.m.-12:30 p.m.
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 they offer a place where you can: • Share what it’s like to have cancer; • Exchange and brainstorm tips about coping with cancer; • Be around other people who understand and share what you’re going through.
RESOURCES: Cancer Support Helpline–Volunteers with a personal experience of cancer provide one-onone peer support seven days a week. Call 505-255-0405 or 855-955-3500 People Living Through Cancer–1-888-441-4439 pltcnm.org/emotional-support/
CANCER FOUNDATION FOR NEW MEXICO 3005 S. St. Francis Dr., Suite 3B, Santa Fe 87505 Experienced, licensed facilitators lead all of the support groups. Contact Caroline Owen, 505-955-7931 ext. 3, caroline@cffnm.org
LOS ALAMOS COUNCIL ON CANCER LACC sponsors free and informal cancer support for patients and survivors. The frequency of the meetins is based ont the needs and demands of the individual. Contact Amy Woods at 505-412-0351
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here are people out there that want to empower you and provide support. You are not alone.” ~ CANCER SURVIVOR
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Helpful programs and services
Having cancer is never easy, but finding help in the fight should be. Whether it is finding means to travel to appointments, locating an affordable place to stay, getting help receiving food, or simply receiving the tools you need to help you, New Mexico nonprofits can help. FINANCIAL ASSISTANCE Cancer Foundation for New Mexico
If you live in the counties of Santa Fe, Rio Arriba, Taos, Los Alamos, Colfax, Mora, San Miguel, Union or Harding you may be eligible for assistance from the foundation in these categories: • Mileage 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. • Hotel Stays\Rooms at Santa Fe Suites are provided to patients receiving treatment on consecutive days and for those living at least an hour away from the treatment center. • Grocery gift cards can be used at participating stores • Spanish-speaking interpreter/translator can be arranged to help during exams and treatments. 505-955-7931, ext. 3 • Patient Emergency Fund This may be used for such things as repairs to a car needed for travel to appointments To learn more about CFFNM or to donate visit: www.cffnm.org or call 505-955-7931, ext. 3, 3005 S. St. Francis Dr., Ste. 3-B, Santa Fe
HELP PAYING FOR MEDICATIONS St. Vincent Hospital Foundation
The St. Vincent Hospital Foundation will pay pharmacy costs of up to $1,500 per year for qualifying patients of the CHRISTUS St. Vincent Regional Cancer Center. Ask your health care provider for more information.
MORE FREE AND REDUCED-COST RESOURCES
Cancer Services of New Mexico Free Family Cancer Retreats: April 17-19, September 11-13 Educational sessions on treatments, clinical trials, talking to kids about cancer, pain management, insurance and finances. Albuquerque Marriott Pyramid North, 5151 San Francisco Rd. NE, Albuquerque – contact mike@cancerservicesnm.org 505-239-4239
Cancer Services of New Mexico
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 NM’s Stephanie Michnovicz at 505-999-9764
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AMERICAN CANCER SOCIETY Resource Centers and Programs Volunteers help with programs and services and make referrals to community resources.
Patient Navigators: A patient navigator is a professional who works with newly diagnosed cancer patients, their families and caregivers, providing helpful community-based resources In Santa Fe and Albuquerque,(and statewide) contact Jessica Quiring, 505-262-6018. Road to Recovery program: Volunteer drivers provide transportation to and from treatment for cancer patients who do not have a ride or are unable to drive themselves. Volunteer drivers are needed in Santa Fe. Contact Geraldine, 505-262-6028. Reach to Recovery program: Breast cancer survivors provide one-onone support and information to help newly diagnosed patients cope with breast cancer. Contact 1-800-227-2345 Hotel stays: The American Cancer Society partners with local hotels and motels to provide free lodging to patients traveling to their cancer related appointments. Contact 1-800-227-2345 For more information about programs and services call Shirelle Besse is at 505-262-6016
FOOD ASSISTANCE
Kitchen Angels: For residents of Española, Los Alamos, Pojoaque and Santa Fe • 505-471-7780 • www.kitchenangels.org
Kitchen Angels Meals on Wheels Food Stamps
Meals on Wheels: For residents of Santa Fe County 505-992-3094
TRANSPORTATION Santa Fe Ride Program
Santa Fe Ride Program: www.santafenm.gov/santa_fe_ride
OTHER
The Pancreatic Cancer Action Network Supporting those affected by pancreatic cancer | www.pancan.org Nancy Murphy Bowles nbowles@pancanvolunteer.org Taos Area: Holy Cross Hospital’s Cancer Support Services provides free, non-medical supports to people in Taos & Colfax Counties who are struggling with cancer. For information on the services and to apply go to: taoshealth.com/taoscancersupportservices/ or call 575-751-8927 or send an email to jpfeifer@taoshospital.org
For professional guidance and support: *Cancer Foundation for New Mexico Carolyn Owen, Patient Services Coordinator • 505-955-7931 CHRISTUS St. Vincent Counseling Support Karen Gano, LMSW • 505-913-5731 “I highly recommend attending the Family Cancer Retreats—Everyone around you has been through what you were going through. I felt “normal” all weekend.” – D. VIGIL, PARTICIPANT
NOTE: Try something once. Then choose to continue or not. But give it a try. 2016 C.A.R.E.
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“At the start of your diagnosis or at any time during treatment I can direct to different resources- acting as the liason to get connected with different programs.” – KAREN GANO, SOCIAL WORK
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mproving your quality of life as you navigate through your illness…together.” ~ DR. EGLI, MD FACP
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Supportive care: The palliative path palliative [pal-ee-ey-tiv] = serving to
“palliate”
palliate = to alleviate; relieve or lessen without curing; mitigate
Palliative care is a growing field of specialized medical care that improves the quality of life of patients and their families by focusing on relief from pain, stress and other often debilitating symptoms of treatment for a serious disease such as cancer. It aims to eliminate physical and emotional discomfort to enable a deeper focus on living. It provides one with a chronic illness that extra layer of support that can assist in improving one’s quality of life. Although it does not cure the disease, this “supportive care” can help people: • Manage symptoms/side-effects • Alleviate pain • Receive spiritual/emotional/mental support • Deal with depression • Improve the mind/body connection
NOTE: Any person, of any age, with any type of cancer, at ANY stage, may receive palliative care.
The care from a palliative doctor does NOT take away care from an oncologist or primary care physician (or any others). They will still manage your cancer and general health. Through eastern and western medicine a palliative care physician focuses on your physical, spiritual and your emotional well-being as you navigate your serious illness. NOTE: Whether you have a caregiver or not, palliative care is something that can benefit you.
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 patients’ needs, explains treatment options and gives patients and their families a voice in determining their treatment and care. 2016 C.A.R.E.
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THE DOCTOR IS IN: Q& A with Dr. Egli, MD, FACP Palliative Care Physician Q.What is a common myth about Palliative Care? A. Palliative care is NOT end of life care. It’s 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. What questions should one ask a palliative care specialist or physician? A. There are no right nor inappropriate questions to ask. Palliative care specialists are there to discuss any questions/issues/fears which are affecting the patient’s quality of life. Q. How does the management of symptoms through palliative care differ from the management of symptoms/side effects one would receive through the Cancer Center? A. The palliative care team uses a multidisciplinary approach to the patient/family issues with each disciple 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. How are palliative care social workers/counselors different than others? A. The palliative care Medical social worker is focused solely on patients/families dealing with serious illness. Therefore they have more expertise and experience in the issues that arise in these situations. Q. Is there anything that caregivers can benefit from at the CHRISTUS Holistic Health & Wellness Center? A. There are many programs for caregivers including: support, grief support, and counseling and are welcome to participate in our standard exercise programs [yoga, tai chi, qi gong], guided imagery, guided meditation, and massage.
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. “For those who are not spiritual or religious, talking about their life and death in the context of the larger cycle of nature can be helpful.”– REV.
To emotionally and mentally sort through these issues, have a conversation with a trusted clergy member, priest, rabbi, chaplain, or palliative care physician. The CHRISTUS St. Vincent Spiritual Care Team’s goal is to help patients maintain a healthy emotional and spiritual outlook throughout their treatment. For more information, contact the Spiritual Care Team at 505-913-5240.
“We can deal with advanced care planning and life goals, and how these goals line up with your oncologist/primary care providers. We are always thinking about what we can do from a treatment standpoint to meet your goals. We want to help you with your quality of life, and we want to empower you to take the lead in your own care plans.” – AMY FREDERICKS, DIRECTOR OF THE HEALTH & WELLNESS CENTER
HOLLIS WALKER
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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
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reat yourself to relaxation.
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Feed the body, mind and soul
Much of your life living with cancer is focusing on going to appointments, taking the medicine that has been prescribed and undergoing treatments. This is crucial in feeling better. However, medication and treatment are not the ONLY ways to feel good! The concept of “holistic wellness” refers to an approach to health and healing that looks at the entire 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 NOTE: therapists, health coaches, etc. AND the patient. There are many local programs Both qigong and tai chi are extremely that can help you through the physical, mental and emotional stress of the gentle on the body standard medical treatments throughout your cancer journey. d can even be
APPOINTMENT SCHEDULE YOUR “OTHER” TYPE OF THERAPY
MONDAY
an done from a seated position.
2 – 3:00pm Yoga for Cancer Patients – ($5 per class) Improves flexibility, strength, circulation, balance, stamina, and aims to reduce muscle soreness and fatigue. 5:30-6:30pm – Tai Chi for Beginners A series of slow, deliberate moves practiced as an exercise for health, as well as a system of self-defense, as a relaxing and enjoyable sport practiced by young and old, strong and frail.
6:30 – 7:30pm *Meditation 12-Step Outreach TUESDAY WEDNESDAY 2:30 – 3:30pm *Yoga for Health – ($5 per class) Explore a variety of postures,
breath work and relaxation techniques using props to support and sagely guide you to your optimal pose. 5:15-6:15pm –*Contemplative Practice ($10 per class)
THURSDAY
9:30-10:45am – Self Healing with Qigong – Focuses on simple body movements, relaxation and breath, which allow one’s energy to flow smoothly, eliminating blockages caused by disease or emotional trauma. 4 – 5pm *Meditation in Motion 5:30 – 6:30pm – Yoga for Cancer Survivors – ($5 per class) Emphasis on yogic breathing, postures, and meditation. It will help minimize side effects of treatment | reverse postural and range of motion issues from surgery and reconstruction | awareness and prevention of lymphedema (swelling and fluid build up) | rejuvenate the body with breath and movement.
FRIDAY
8:30 – 9:30am – Tai Chi for Health and Relaxation Focuses on slow and continuous movements creating balance in the mind-body connection to give relaxation and renewed energy for everyday life.
* = $10 class | Reserve your spot by calling 505-913-3820 | All classes take place at 490 B West Zia, Suite 4 Santa Fe, NM (by the CHRISTUS St. Vincent Cancer Center) Email Alysha. DAmour@stvin.org for updates on all classes! 2016 C.A.R.E.
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What is Complementary Medicine?
Complementary medicine is used along with standard medical care. 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
“As a result of chemotherapy I experienced muscle and joint stiffness and soreness so I began participating in the Yoga for Cancer Patients weekly class. Within a few months the majority of my symptoms were gone and my energy level increased. I still participate in yoga and I love it. The instructors [Cynthia and Lisa] are so caring and loving.” – YOGA CLASS PARTICIPANT/CANCER
NOTE: TRY THIS AT HOME elling To help reduce sw ion: and help circulat Sit with legs elevatedt and do the alphabe with your feet.
“As a breast cancer thriver, I know firsthand the toll our body takes in treatment. In class we practice supine, supported restorative poses that cool down the body and the nervous system from these effects. These poses deeply rest the body and the mind, helping to release fear and stress. There is a strong bond of sharing, community and safety among those in our classes. Most importantly, yoga helps patients reconnect to their bodies and develop confidence in their body’s ability to heal and recover.” – CYNTHIA NERO, CANCER EXERCISE SPECIALIST
SURVIVOR
COMPLEMENTARY TYPES OF THERAPIES INCLUDE: Acupuncture | Antioxidants | Aromatherapy Art therapy | Chiropractic Cognitive-behavioral therapy NOTE: Dietary Supplements | Exercise Before starting a e Herbs and extracts | Hypnosis | Intercessory new routine, exercis prayer Intravenous Vitamin C program or using complementary Meditation | Multivitamin | Music Therapy dicine ALWAYS me Pet Therapy | Relaxation Therapy | Yoga r. consult your docto Spiritual Healing | T’ai chi | Tea Therapeutic Massage THE ST. VINCENT HOSPITAL FOUNDATION PROVIDES ACUPUNCTURE AND HERBAL TREATMENT FOR QUALIFYING PATIENTS. • MASSAGE THERAPY* Therapists certified in oncology
“Someone at home should always give foot massages! It’s good to be touched, relieves stress and helps with neuropathy” – OBIE, ONCOLOGY MASSAGE
• ACUPUNCTURE THERAPY* Doctors of Oriental Medicine certified in oncology
THERAPIST
*Many insurances companies have a copay for such services. For activities that your insurance doesn’t cover the CHRISTUS St. Vincent Holistic Health & Wellness Center offers a “same day pay 40% discount on all acupuncture and massage 2016 C.A.R.E.
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THE DOCTOR IS IN: Eric Buckley, DOM A closer look at Oriental Medicine: “The benefits of Oriental Medicine include drug-free assistance with a host of medical issues, including but not limited to pain management, psycho/spiritual support for concerns that may arise that lead to anxiety or depression, fatigue, nausea, loss of appetite, and bowel imbalances such as constipation or diarrhea. 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. Many times we have had more success treating complex conditions in this way.” For specific therapy questions contact Eric Buckley | ebuckley@st.vin.org, DOM 505-913-3821 For more information on all programs and services contact Alysha D’Amour Phone: 505-913-3820
Healing and Mindfulness
Like anyone, cancer patients are the best and the most authentic healer for yourself. Healing occurs on many different levels. It is not your fault that you have cancer. 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 psycho-spiritually. When someone is too ill to do much, that may mean something as simple as getting some pens and an adult coloring book, or journaling and writing poems or little stories about what we are experiencing. Cancer automatically puts people in an area of your life that you are unfamiliar with. It might be hard to initially step outside of the box and do something you never have. That is natural, however, 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, then allow yourself to try a new activity or pick up a new hobby. Something else to try: A few studies have found that inhaled (smoked or vaporized) marijuana can be helpful treatment of neuropathic pain (pain caused by damaged nerves), food intake in HIV patients, and have long shown that people who took marijuana extracts in clinical trials tended to need less pain medicine. Some animal studies also suggest certain cannabinoids may slow growth and reduce spread of some forms of cancer. 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. If you do choose to address side-effect issues with any cannabinoids always consult with your doctor and know that disclaimers like “I’m only doing this because…” are unnecessary. Whether it is this or anything else; do what feels good during your treatment. MauryBrooks.com Creator of ‘*The Allergy Code*™’ Overcome allergies | Rebuild your immune system |Manage food challenges |Release sensitivities Qigong Energy Heals ~ since 1988 *505-216-6050*
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Hypnotherapy Center for Positive Change You Are the Builder of Your Life ™
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Y Can Create You t Change You the Need N and Want. Hypnotherapy H Can Help Internationally Certified Hypnotherapist
1418 Luisa St., #5, Santa Fe, New Mexico 87501
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Practicing in New Mexico, Colorado, and Michigan hypnotherapycenterforpositivechange.com 2016 C.A.R.E.
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E
ach day get dressed for YOURSELF. If you want to wear lipstick, wear lipstick. If you don’t want to wear a wig, don’t. Throw on a baseball cap if you want to. Hold your head up high and get on with your day with confidence.”
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Looking your best
Cancer treatments and their side effects almost always cause physical changes. Sometimes people say they can’t recognize themselves in the mirror for one reason or another. Still, there are many ways to both look and feel better by taking positive steps to cope with this new physical appearance. Try not to let people talk you into something you don’t feel comfortable with. You are the one who will have to live most intimately with your hair loss, so you are the one who gets to decide what feels right for you in terms of your physical appearance. It’s your decision.
Weight
While many people lose weight during chemo, other treatments, such as steroids, may cause bloating. In both cases, opt for loose and unstructured clothes instead of tailored designs that will look awkward if they don’t fit properly. If your face becomes puffy, try V-necks that elongate rounder faces. Crew necks and other round necklines will give the illusion of fullness if you’re looking drawn from rapid weight loss.
Nails
Most likely, your nails are very brittle and dry due to your treatment. Use rubber gloves when washing dishes and cleaning, and keep your hands away from harsh or drying chemicals such as bleach. Men: Keep nails short. Women: Let nails grow and lightly file them with an emery board no more than once a week., artificial nails or any nail polish remover that isn’t acetone-free.
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., and protect your skin as follows: • Wear clothes that cover you, such as long-sleeves and pants/longer skirts. • Invest in several broad-brimmed hats. • Use button ups, scarves,, shawls to cover your chest, throat and neck. • Always be aware when you’re in the sun (for example, when NOTE: driving, your left arm can be exposed to lot of UV rays). hes
ras Your skin might getk to your during treatment. Tal them have of medical team. Many ion kits that hypoallergenic lot sses to help can help. Have sungla m the lack protect your eyes froenex to help of eyelashes, and Kle due to a lack se remedy a runny no irs. of nose ha
I never thought I would post a bald picture on Facebook. If I can do that, I can do anything! — VALERIE
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Hygiene
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, showering, wearing clean clothes, etc). If any hygiene-related activity is difficult to do alone, ask for assistance from a family member or close friend. Handling these little things can contribute to one feeling more confident and comfortable.
Hair
The most recognizable side effect to cancer is temporary hair loss. NOT everyone loses their hair. Like all side effects, this is dependent upon the type of treatment one is getting. Why it happens: The most recognizable side effect to cancer is hair loss. Remember Not everyone loses their hair. Like all side effects, this is dependent upon the type of treatment one is getting. Why it happens: Chemotherapy attacks quickly duplicating [cancerous] cells. Healthy cells that control hair growth sometimes get “caught in the crossfire.”
Take control of the situation. Cut your hair before the cancer takes it! It’s a great feeling of losing it on “your terms” — DONNA
Wigs, hats and scarves
Choosing a wig, beanie, hat or scarf is a practical step and it can also be very emotional. It’s a good idea to enlist the support and company of a friend when you go shopping, get a haircut, or seek to remedy this aesthetically.
“I liked to dress up to go to appointments and treatments and always wore a smile on my face. The only time I cried was when I was losing my hair and my husband shaved my head. After that, I had fun getting and experimenting with different accessories like scarves and hats and getting another wig. I wasn’t going to be able to change anything so I just accepted it. That has probably been the worst part of the whole experience for me. I used to have so much hair…but, Hey! I’m alive!!!” — SURVIVOR
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 or eyelashes was a shocker and made me feel very self-conscious. One day, a co-worker walked by and started laughing as he pointed at me and said...”Chemo, right?” He kept walking & I said, “Yep, sure is.” He returned a few minutes later and asked me if I was serious. When he found out I hadn’t just shaved my head and it really was from chemo, he couldn’t apologize enough. We still laugh about it today and he says his shoes tasted really bad that day.”
— SURVIVOR
Reconstructive surgery
This is a realistic option for many people who undergo surgery to treat cancer. Talk with your health care providers to understand your options and find out what types of reconstructive surgery are covered by your insurance.
Prosthetic devices/artificial limbs
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.
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RESOURCES:
Look Good Feel Better program *FREE* Look Good Feel Better program is designed to help female cancer patients deal with appearance-related side effects of cancer and treatments. In a supportive, safe and companionable group session, attendees learn about skincare, make-up, wigs and head coverings. These classes are given by licensed estheticians and cosmetologists who give their time and their skills to help women through their cancer journey. All participants receive a free kit of name-brand beauty products valued at $250!
PATIENT RESOURCE CENTER * FREE * wigs, knit caps, turbans, beanies, for women, and beanies for those undergoing cancer treatment CHRISTUS St. Vincent Regional Cancer Center + fittings for prosthetics and pocket bras available.
“We will counsel you on what fits March 23rd, 2016 & scheduled throughout the year YOU, your style, and your comfort 1pm-3pm the best during your treatment.” Residence Inn by Marriott – 1698 Galisteo St., Santa Fe NM –Tenchie & Linda, Resource Center Register and learn about more dates by calling 505-262-60616 Coordinators New Mexico Mission of Mercy Program’s *FREE* 2-day dental clinic Handles every kind of dental work for those who don’t have a dentist, dental insurance, or the financial means to keep up with your dental work. (No questions asked) April 7-10, 2016 | Santa Fe Convention Center | For men and women of all ages For more info: www.nmdentalfoundation.org Provided by
Open 10am-2pm CHRISTUS St. Vincent Cancer Center (490 W. Zia Rd., Santa Fe) 2nd floor 503-913-3095 Provided by St. Vincent Hospital Foundation SOURCES: American Cancer Society, National Cancer Institute, CHRISTUS St. Vincent, NM Dental Foundation, Testimonies from those affected by cancer
www.findsolace.org
6601 Valentine Way Santa Fe, NM 87507 505.988.1951
Crisis Hotline: 1.800.721.7273
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here’s nothing like a warm blanket, pillow, and a smile from my caregiver to make me feel comfortable. ~ CANCER SURVIVOR
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Shopping: The essentials
Among “the new normal” for those living with cancer is a new shopping list and ways to get everything you need, from medical supplies to groceries and food.
SANTA FE PHARMACIES AND MEDICAL SUPPLY LOCATIONS Albertsons • Christus St. Vincent • CVS Del Norte Pharmacy Lovelace Medical Center Pharmaca Sav-On Drug • Smith’s Target • Walgreens • WalMart
GETTING A HANDICAP PLACARD
MEDICAL SUPPLIES ONLY Preferred Medical A&R Medical Supply
You can apply for a Parking Placard for Mobility Impaired Individuals from the New Mexico Motor Vehicle Division. Download and print the form, from the website at www.mvd.newmexico.gov/ forms.aspx or pick it up at the local Motor Vehicle Division office. Have you/your doctor complete the application and return to your local MVD.
Avoid multiple unnecessary trips to the grocery store by keeping a running grocery list in a prominent place in the house. Add items as you run out of them so you won’t forget things.
At your doorstep Dashing Delivery Takes *local meals straight to you! Participating restaurants are: Santa Fe Bar & Grill | Cowgirl | Thai Café Counter Culture Café Rooftop Pizzeria Atrisco Café & Bar | Pizzeria A Lino | La Choza Lu Lu’s Chinese Cuisine |The Burrito Co. & MANY MORE *$6 minimum delivery charge Call 505-983-DASH | dashingdelivery.com to review menus & order food online! Blue Apron Program that delivers all the fresh ingredients you need to make delicious meals in exactly the right proportions. Conveniently order week’s worth of food (for 2 or a family) online so you can prepare delicious, inventive meals at home. www.blueapron.com
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 NOTE: Call in your order for Going shopping forct pickup these items is a perfene 505.982.2629 response to someo
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Put some of these helpful items on your initial shopping list! MEDICINE CABINET
• 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/Hat • Vaseline • Tissues and paper towels • Soft brush tooth brush • Kleenex
KITCHEN
• Sandwich bags—Great for packing snacks
COMFORT
• Extra blankets/robe/pillow • Compression socks • Heating pad/throw for sofa • A lap tray—for eating, reading, computer work • Winter gloves—Will help keep hands warm with chills • Travel neck pillow—Have comfortable car rides/naps
NOTE: A % of your Santa Fe Smith’s purchase can go to the Cancer Foundation for NM through their community partnership
• Plastic Water bottle(s)—Find a couple ones that the person would like, and can easily fill up. • Blender—for shakes and smoothies • Trashbags & bucket—For bedside nausea
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our greatest test is when you are able to bless someone else while you are going through your own storm.” ~ REGINA MALABAGO
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Caring for the caregiver
A caregiver can be a spouse, child, relative, good friend or hired help. Regardless of who the caregiver is, caring for someone with cancer means big changes in your life. Every situation and person is different. There is not a “one size fits all” approach. Caregiving isn’t just about picking up medicine, driving to appointments, or reacting to treatment-related side effects. Instead, it truly is about doing everything you can to make that person living with cancer have a better daily life. Physically, emotionally, or mentally, you are “on-call” to meet those needs. Caregivers are like firemen. There’s a burning house…and you are running in, attacking it head on. Prepare and equip yourself with the right protection so to prevent any unnecessary “burns.” “If a caregiver does not allow for self-nurturing, the person quickly becomes burnt out, resentful and ineffective. Cancer is not a sprint, it is a marathon, and it is important to stay in shape for the long run.” – RONNI, TOGETHER SUPPORT GROUP LEADER
The guilt of a caregiver
A caregiver’s guilt is real, but it doesn’t have to be really common if you learn to reframe what you are doing and accept the very human emotions that come with it. Oftentimes caregivers feel unsettled if they do something unrelated to the one they are caring for (and possibly enjoy it). Know that you SHOULD (and oftentimes they 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. You might even feel guilty about feeling 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. 2016 C.A.R.E.
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“Caregiving taught me so much about love.” – J. TROT TER
Ya gotta have P.E.P.! Patience – This will be tested. Take deep breaths and be patient with your loved one, others who might not understand your role, and yourself. Endurance – You want to be in this for the long haul, stay the course and find energy sources to keep you fueled. Perspective – Keep a positive attitude and a healthy view of your situtation. Make memories together...it will improve quality of life for BOTH of you.
When patient backlash occurs
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. How should a caregiver react? 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 “Early detection” for a caregiver cookies/pour it into a work project. Put your energy and effort into something that helps It becomes dangerous to allow bottled up feelings you feel a release or see empirical results. and frustrations to go “untreated”. If you feel something unsettling, tell yourself “Wow, okay… I’m getting a bit tense. I feel like I’m losing my mind,” then “You have to keep each day in focus. Work with what you have in front of you that do something about it. day. If you can focus on what’s occurring right then, you’ll be OK & feel like you Don’t wait until you have emotionally/physically/ have it all taken care of.” – J. RAEL, and mentally crashed. Tackle those feelings head on CAREGIVER TO WIFE when you feel them lurking…and do so as early as possible.
Sharing the load
There is no such thing as a “super-caregiver.” You are already a hero by nature of what you If you can’t shake these feelings of possible depression are doing- no need to make it a harder job utilize internal and external resources. than it has to be. Don’t be afraid to accept help from someone. Let’s say that again… Karen Gano, LMSW | 505-913-5731 DON’T BE AFRAID TO TELL PEOPLE CHRISTUS St. Vincent Counseling Support 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 try and utilize if deemed necessary or if the opportunity presents itself.
A caregiver’s “care package”
Let’s be honest: There is nothing that can truly prepare you for your role. There are, however, certain things and reminders that you can “pack” for yourself, to make the experience more manageable: • Knowledge about your loved one’s cancer- Inform yourself; it will build confidence in your position. • Positive 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 confidence. Keep a close network of people who will let you share your feelings and priorities. It doesn’t matter who these people are/how you know them/how long…just have them. • 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 that day? Did you make it through a day at work without snapping back at someone? Did you navigate through a difficult discussion or doctor’s appointment? Recognize these accomplishments and be proud.
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Those living with cancer are not the only ones with “side effects.” As a caregiver you may find that:
A CAREGIVER’S “TO DO” LIST:
With so many responsibilities, it is difficult to keep everything straight. It might be challenging to remember to also “accomplish” these other very important “tasks”: 1) Communicate honestly, clearly and frequently with the person you are caring for. Sharing your feelings can be rewarding for both of you. 2) Relieve stress whether it’s exercise, writing, yoga, meditation or hanging out with positive people. Do something for yourself each day. 3) Be kind to the person living with cancer, to those around you who might not understand your role and especially to yourself. Combat those defensive tendencies. 4) 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 morph. 5) 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 it out.
• 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 that 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/in roles, managing your relationships, and mostly in the way you are caring for your loved one.
How to care…for yourself
Caregivers hear, “Be sure you are taking care of yourself ” 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 absolutely every caregiver. Only you know what it means to make yourself fulfilled and at your best. Sometimes you might have to think about if what makes you happy has changed. Do some reflection. Your answer to “when do I feel at my best?” is crucial to “taking care of yourself.” 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.
NOTE: Caregiving is a journey of cycles. Old emotions and issues may return unexpectedly.
Be your own caregiver by “filling your tanks”
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: 1) Physical — Exercise, get enough sleep and take care of your body 2) Emotional — Be realistic about feelings and share them with others who are supportive 3) Mental — Logically and positively approach situations with a calm mind 4) Spiritual — Maintain a sense of peace by meditating, praying or going to church 5) 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.
“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. You WILL make mistakes. Not making the same one twice, is the true testament of “success” here, and in any role. 2016 C.A.R.E.
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“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 to “be there” for them.
“Dear our caregivers: to take time to It’s okay for you to not have good days. It’s okay for you know you’re we ns, emotio your show to do things just for you. It’s okay the store. When from up ing someth pick to forget you if okay It’s n. huma talk about YOU. It people ask you how you are or what you did that day, took me to. Please you s tment doesn’t always have to be about what appoin ing happens someth if e becaus body or health your don’t be careless with most. Be you need I when you to you then I won’t be able to lean on not be might I to… need you if help your with ve asserti proactive and feel like me make ever don’t Please able to communicate my needs well. every day already. feeling that shake to try I life-my or your on a burden to. Please treat me I’m sorry if I take my illness out on you, I don’t mean company. It is the way you always used to and let’s enjoy each other’s okay” that’s and about me right now, onies) – YOUR LOVED ONES WITH CANCE R” (from actual testim
TIPS FROM THOSE WHO KNOW: Caregivers (past/present)
• The concept of 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 on putting energy towards things that do matter. • LISTEN don’t force one you love to do anything. Being overbearing will help no one involved. • Celebrate the little victories. • Show emotions. • Take their cue.. they’re the one fighting. • Say “I need 5 minutes.” Have 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 what parts of them they’ve lost.
• Make an appointment to hang out with yourself every week. • Keep your doctor’s appointments. Truth is, you are worthless to your loved one if you aren’t managing your health properly. • Treat patients with respect. Allow them to keep their dignity. Don’t talk to them or treat them like their 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 organized. It’ll make you feel better and somewhat in control in an uncontrollable situation. • Make your loved one feel like the role they had before they got sick.
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Just for YOU:
• TOGETHER support group: A Group for Family & Friends of Cancer Patients Discuss the unique needs of the caregiver and those close to one with cancer Where: Cancer Foundation offices, 3005 S. St. Francis Dr., Suite 3B, Santa Fe 87505 Experienced, licensed facilitators lead all support groups. Questions? Contact Caroline Owen, 505-955-7931 ext. 3, caroline@cffnm.org • Self-Care for the Caregiver Mondays 3:30-5:30pm 490 B West Zia, Suite 4 Santa Fe, NM (across the parking lot of Cancer Center) Self-care support group that helps caregivers gain knowledge about how to better take care of themselves, healthy boundaries, body-awareness techniques, art, and mindfulness. Reserve your spot by calling 505-913-3820 CHRISTUS St. Vincent Holistic Health & Wellness Center
“Our situations are all different, as are our days, our needs, and our point of view as we progress or retreat on the continuum. We all have our love for our person with cancer as a common thread and are stitching away to keep the seams together.” –
TOGETHER SUPPORT GROUP AT TENDEE
• Caregiver Support Program A free program that matches caregivers with volunteers who have been in the same role. info@cancerservicesnm.org • 505-259-9583 Things I Wish I’d Known: Cancer Caregivers Speak Out by Deborah J. Cornwall Caregiver.com| Caregiving.org | sharethecare.org | cancercare.org
Home Instead CARES for Santa Fe. Santa Fe’s trusted provider of in-home care for more than 16 years
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From the eyes of your child
“I was 8 years old when my mom was diagnosed with breast cancer for the first time. At that time, I remember being absolutely terrified for my mom to take off her wig, I hated when she didn’t have it on. But the second time around, 20 years later, I remember telling her she didn’t even need to have a wig. I figured if anyone cared what she looked like, to FORGET THEM!!! I was at a different age both times and for me, it affected me very differently. Age made a huge difference in how I approached and perceived the situation. It definitely wasn’t easy either time around but being much older definitely helped me be more educated and mature about everything she was experiencing and doing… which really helped.” – LORETTA
Some things children struggle with: (according to age range) 1-12
• Understanding all of the implications of cancer. • How different you look/the way you look to others & how they stare • Wondering if you’re going to get better
13-18
• Having a good grasp on all of the impact/implications cancer has on the family & potentially on them • Wondering if you’re going to get better • What they’re supposed to do/act like through your battle
19-23
• Deciding the balance of college/job 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
24-35
• Deciding the level of involvement of your diagnosis (being caregiver, moving closer, making career or financial adjustments) • Wondering if you’re going to get better • Managing the other parent’s emotions • The management or thought of you not being there for milestone moments {i.e. wedding, career moves, time with grandchildren}
35+
• Balancing career/family of your own and care for you/other parent • Managing some of the practical things if both parents are unable to • Managing the other parent’s emotions • Deciding the level of involvement of your diagnosis (being caregiver, moving closer, making career or financial adjustments) • The management or thought of you not being there for milestone moments {i.e. wedding, career moves, time with grandchildren} • Questioning their own health and genetic implications on them 2016 C.A.R.E.
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“ I was so shocked; surprised; scared (that my mom might die) when I heard she had cancer. Getting involved with the Making Strides Against Breast Cancer walk made me feel like there was something I could do and I felt less scared. I feel super sad when my mom is tired, doesn’t feel good, or hurts. When my mom was going thru treatments over the summer we didn’t get to spend as much time together - it made me worried that we would never get to go camping or do other things that we like. I enjoy bike rides, or even eat chocolate with her. I think that every kid should try to still do normal things with their parent like watching movies and reading so you can still spend time with them without exhausting their energy.” – WESTON
NOTE: Regardless of age,to children just want are sh either continue to with special moments them ve their parents or ha tone be there for miles lives. moments in their
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Talking with your children
Communicating your diagnosis to family members of your diagnosis 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 one’s child[ren].
Getting others involved
A parent’s first inclination in time of crisis is “I have to handle this”. Sometimes it is helpful to call in some outside help to assist in the situation in different ways. • 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 • Tell someone close to your child (teacher, close friend, coach, etc) to be “on-call” to recognize and step in if needed
Children and Cancer
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. Try to keep your family life as normal as possible during this time, and also 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 your child know that cancer is a scary disease and that it’s okay to have strong feelings about it. It’s also a good time to reassure your child that the family will work together to handle it. Talking to your child about a family member’s cancer: • Be patient and remember this is a process. Give small amounts of information at a time • 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 2016 C.A.R.E.
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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 they need to each hear. 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/you might not feel comfortable to discuss them as they are taking place
“Once a mom & dad always a mom & dad. Telling the kids when I was first diagnosed was the absolute worst - even though they are adults. We told the kids and our families that we wouldn’t lie to them or hide anything from them. Sometimes that means we don’t say anything until we have all the facts but honesty works best for us.” – PARENTS OF TWO
APPROACH/THINGS TO CONSIDER AT DIFFERENT AGES: 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.”
9-18
Go into more depth about the cancer and what changes will affect them • 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/you might not feel comfortable to discuss them as they are taking place
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)
24-35
They understand more so involve them on 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
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)
How will the child react?
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.
NOTE: If the parent doesn’t g lin feel comfortable tel the child about the diagnosis, it can be se helpful to enlist a clothe relative or friend for s. first conversation
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Sample Conversations: Setting a tone
RESOURCES
Stepping Stones – Support program for children ages 3-21 who have a family member living with a life-threatening illness; FREE; Contact Gerard’s House for more information: 505-424-1800 | www. gerardshouse.org | info@gerardshouse.org
Dad: As you have been able to notice, your mom hasn’t been feeling good. She is sick actually. She does have cancer. Now, whereas we aren’t 100% sure how it is going to go or end, 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.
Cancercare for Kids – Online support program for teens with a family member with cancer www.cancercareforkids.org 800-8134673
When Dealing with an Aggressive Cancer: Be honest
Kids Konnected – For children and teens whose parent has cancer or who have lost a parent to cancer www.kidskonnected.org 800-899-2866
Child’s question: “Will you get better?” Parent’s Answer: “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.”
Kidscope – Online materials and virtual comic book for children about chemotherapy www.cancer.gov Family Cancer Resource Bags Cancer Services of New Mexico offers *FREE* information kits to help parents discuss the cancer journey with their children. Materials are targeted for children aged 4-12 as well as teenagers. 505-259-9583
Home Instead CARES for Santa Fe. Santa Fe’s trusted provider of in-home care for more than 16 years
Call for your complimentary Care Consultation
We’re by your side to help your loved one stay in the place they call home.
505.471.2777
Whether in the midst of decision making for a loved one’s care options or even future planning for yourself, Home Instead’s professionals can be a consultative resource for you and your family.
www.homeinsteadsantafe.com www.caregiverstress.com Each Home Instead Senior Care franchise is independently owned and operated.
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Spousal relations
Cancer affects every relationship in one’s life. A spouse/partner might be one of the most affected by a diagnosis, because for them, it means big changes not only for your life but also your life together as a couple.
COMMUNICATION IS KEY
Just like everything else up to this point in your relationship, you’ve approached joys and trials together. Cancer isn’t any different. If anything, it is a time that calls for some of the most important collaboration a couple has ever done.
NOTE: You have to be openur and honest about yo / use feelings—your spo ays partner will not alw ling know what you’re fee s. in a situation like thi
“My husband, Kenny, has been by my side every step of the way. There have been ups and downs but one thing we decided on early on was that we’d find something to laugh about every day. Naturally we’ve dealt with have been some role reversal issues. As Kenny always took care of the outside of the house, I managed the inside. Early in my diagnosis there were many things I just could no longer due - mainly due to fatigue and other chemo side effects. So, he took over most of the chores and cooking which actually resulted in a new stove! One commitment we made when I was diagnosed was that cancer would not change or define who we are and that we were going to laugh about something together every single day.
I strive to be extremely honest with my husband. He knows how I feel and if it’s a good day or not. I try very hard to be tuned into him as well. We knew early on in the diagnosis that this would mean lifelong issues for both of us. We rely on our faith. We have been blessed to have prayers said all around the world for us and we have witnessed miracles many times over. 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 the past 37 years and will continue to have through this journey together.” -MaryAnn Baca RESOURCE: KISS THE GIRLS AND SAY GOODBYE: GETTING THROUGH BREAST CANCER AS A COUPLE” BY JESSE AND MACKENZIE ALLEN (AVAILABLE AT COLLECTED WORKS AND ON AMAZON)
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HIM:
HER:
“It helps me to realize that this is “Jerry has taken such good care of the most important person in my me. He is such a keeper!”– Lois life & I absolutely love taking care of her.” – Jerry
THE “SPOUSE SWITCHEROO” – 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; they ALL may be impacted in one way or another. Have open communication about what needs to be done and who should do it. There are tasks that as someone with cancer, you might WANT to maintain control of. 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. This is where your spouse must step in and start to handle the things they didn’t before. So if you aren’t the one who would cook or pay the bills, equip yourself with the materials and the knowledge to do those things.
HAVING TO DO THINGS BY YOURSELF
Getting used to/feeling comfortable attending some of life’s events without your loved one for a while might affect you. Know that it is still something that must be done for a sense of normalcy. As long as you’re going through it together, you’re growing and making progress. As his soulmate, friend and wife, I will continue to walk this cancer journey and fight this alongside with him. Every time I look into his eyes or hold his hand, I’m reminded how much I loved him yesterday, do today and will forever love him for all tomorrows. Living every moment in thanksgiving of our life together is what gets me through each day—one day at a time! -WIFE
CANCER AND SEX: 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 then acknowledge how it may be affected by the diagnosis. 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 have an honest conversation. 2) Use your medical team as a resource. Ask your oncologist, nurse practitioner, nurses, palliative care physician, doctor of medicine, or social worker about concerns you have. 3) Discuss your concerns with a trusted friend/someone who may understand/can help.
NOTE: p Help your spouse hel you (and themselves) of list a g by makin resources/how to dot certain things so thae they feel comfortabl se handling some of tho things.
CANCER AS A COUPLE TIPS FROM THOSE WHO KNOW:
• Tell each other how you’re feeling • Be sensitive to their needs • Ask open-ended questions • Still express how attracted you are to them • Develop a battle 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.
Phrases like “you are so beautiful” or “you’re handsome” will go a long way to your insecure spouse. Affirmation in this way helps build confidence. The couple may need to seek alternative ways to “keep the spark” in the relationship. Intimacy does not necesarily equate sex. Seek other ways to feel intimate with each other and re-define what it means together. 2016 C.A.R.E.
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ids will always find a way to play on....
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A child/adolescent’s diagnosis
When a child or teen is diagnosed with cancer, parents and other adults involved in the child’s daily life are often the keys to how the family copes with the diagnosis. Realize that you may never know what caused the child’s cancer. Learn as much as you can and move forward by focusing on their future.
FOR PARENTS: Changes to Expect • Needing to take time of from work/adjusting school schedules and communicating with teachers • Signing treatment consent forms and making important decisions • Needing help to care for other family members • • Feeling shock, disbelief, fear, guilt, sadness, anxiety and anger
INFANTS-YOUNG CHILDREN
SCHOOL-AGE
• Give simple explanations of what’s going on • Encourage them to identify their feelings with • Do not tolerate aggressive behavior and words continue to teach them to express feelings in • Offer repeated assurance that they did not cause ways that don’t hurt them or other people the cancer • Create opportunities for physical activities • Pay attention to unasked questions & pay • Reward good behavior from cooperation with attention when they discuss fears and concerns tests and procedures (discuss with social worker)
TEENAGERS-YOUNG ADULTS • Include in all discussions about discussion and treatment planning • Be willing to tolerate some reluctance to share thoughts and feelings • Allow them to talk privately with professionals • Offer assurance that the crisis will be managed
WHEN IT’S YOUR BROTHER OR SISTER (ANY AGE) • Have trouble concentrating and school/work • At any age, siblings may deny or minimize their responses or emotions because they don’t want to add to their parent’s distress. The older one gets, the more the children (of any age) look to take care of their parents more.
FOR CHILDREN: Their Diagnosis
NOTE: Be attentive to your d s an children’s reaction cancer seek advice from the ding care team about fin pport if extra counseling su needed.
At any age it is extremely difficult to hear that your body isn’t working at its best, especially when you are young in age.Children and teenagers often respond to news of a cancer diagnosis with a range of emotions that that reflect those of their parents.
RESOURCES: • U27 Cancer Survivorship Group for Adolescents and Young Adults Under 27 | Contact: 505-242-3263 • Stepping Stones Support program for children ages 3-21 who have are living with a life-threatening illness FREE • Contact Gerard’s House for more information: 505-424-1800 |www.gerardshouse.org | info@gerardshouse.org 2016 C.A.R.E.
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ive days with love, joy and family.
s hip rt s n o lati Suppo e R &
~ CANCER SURVIVOR
. . . r e h t e g ate To
Navig
Family Dynamics
Everyone knows that a diagnosis affects that person. Cancer, at any stage, however will spread to the entire family...and all will feel the impact. Every family is different, with many variables that need to be considered when trying to navigate through a loved ones journey. A cancer diagnosis introduces many structural changes in the life of the patient, family and friends—doctors’ appointments, change in diet, reorganization of the house, time away from home. There needs to be discussion about coping with the life changes cancer brings and it’s impact on the family.
HO
RUL E
USE
S
It’s important for all immediate members of the family to be on the same page in the diagnosis and set expectations for themselves and the situation before them 1. We will all make the one with cancer our focus to the best of our capabilities 2. We will all do what we need to do to keep ourselves healthy 3. We will communicate our feelings to each other/trusted friends or a professional 4. We will surround ourselves with positive and supportive people & utilize resources 5. We will do our best to adjust to the new “roles” and help support each other in their lives 6. We will respect & not try to change each other’s coping mechanisms & communications styles (unless they are detrimental) 7. We will have a mature, calm conversation- free of accusation or hurtful words if we disagree 8. We will apologize if we take out our frustrations of the situation on each other 9. We will put our own preferences aside/let bygones be by bygones on holidays/if our loved one has a special request for us 10. We will forgive anyone who doesn’t adhere to these rules and keep focusing on the one living with cancer 2016 C.A.R.E.
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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. In 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.
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.
EMOTIONAL
Communicate. Seek help from a professional therapist, a support group, or clergy to facilitate communication especially about painful and difficult topics.
DISTANCE
There are ways to make your loved one feel cared for from miles away. It’s a matter of how much guilt do you want to take on potentially. Between text messages, skype, pictures of activities going on in your life etc- and staying in touch with the caregiver (family member) can make the miles between you and the situation a nonissue.
“As a Licensed Marriage and Family Therapist, I find that through the life cycle families experience many different situations and stressors, and illness is one of them. Usually the dynamics that existed in a family prior to the illness are there only heightened by the gravity of a cancer diagnosis.” – RHONA S. LEVINE
Family Game Planning
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 of how everyone else will be stepping in will take place. 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. The “tackle head-on together” approach 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/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. “None of us know the dates for the time we’ll serve here on earth, we all know it’s not forever. But the ability to live those days with love, family, joy is something within our reach and something to strive for. My father has far exceeded that challenge and set a high standard. He’s always been my personal hero and has served our family with guidance, strength, stability, love and always unwavering faith before and through cancer treatments. 2nd Corinthians 4:16-19, Therefore we do not lose heart.... So we fix our eyes not on what is seen but what is unseen, since what is seen is temporary, but what is unseen is eternal.” – THE BALIZAN FAMILY 2016 C.A.R.E.
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The more things change the more things stay the same
Cancer flips worlds upside down and there are many changes that can come along. Some things, do however seem to remain the same amongst family members. Coping mechanisms–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 deal cope healthily.
Meet the Coping Family
Members in the family might each take a different “role” when it comes to how they deal with the diagnosis: “The serious one” “The sentimental one” “The responsible one” “The disengaged one” “The helpful one” “The sad one” “The poor me one” “The I don’t want to talk about it one” “The mad one” “The organizer” “The fixer” Regardless of what coping mechanism they use, it’s important for everyone to feel like they used to, in some capacity. 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.
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 deal cope healthily.
Pressure of the Patient
“No matter how horrible I was feeling. I had to be the strong one. Because when I was down–everyone was down.” 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 to stay strong for everyone else to exist. Make a valiant effort to not spend your time worrying about your family worrying about you. You need all of your energy to give to yourself and to manage your health. NOTE: LY ATTENTION ALL FAMI MEMBERS: can. 1) Help any way you er. 2) Be a good listen er mb 3) Let your family me/her know you love him on a daily basis. 2016 C.A.R.E.
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Family Tips
You aren’t required to give information about your health to anyone you don’t feel comfortable…no matter if you are related or how long you’ve known them. Who is considered “family” is determined by each person, and knowledge is a privilege that should be treasured by those who are trusted. 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. To avoid “clashing caregivers” in a family, each must recognize they are on the “same team” & the importance of working together. Divide and conquer the responsibilities. It helps the parents if siblings collaborate together. If you have sibling-issues, don’t make them a focus at events and don’t let them hinder your parent’s needs/wishes at any time.
“I found myself having to be cognizant of how I was talking to my wife, my dad, and others around me because they were all there trying to help and it wasn’t their fault. As a man and a retired cop, I was used to being the one who was strong and helping everyone else, taking care of and fixing things. I said a lot of ‘I’m sorry’s’ and did a lot of kissing up to them afterwards!” – ROB
NOTE: do Make it a priority to as memorable things a family (i.e. take a trip vie together/have a monal night/get professio ) family photos taken
“Many women have this ‘Must be Supermom/superwoman’ idea. Asking for help and saying ‘no’ is not a sign of weakness- it will help make you [your family] stronger.” – FAMILY MEMBER
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. 2016 C.A.R.E.
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hen you’re here, you’re family
s hip rt s n o lati Suppo e R &
. . . s d n a lping h
He
Your extended family
In addition to family and friends, the people that those with cancer interact with most are their doctors and nurses. These medical professionals often become your friends, mentors, and are regularly viewed as “family” by those affected by cancer. Sometimes the oncology nurses might even get to know you better than anyone else at this stage of your life. 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.
More than just a job…By Christa Woods, Oncology RN “I always wanted to be an oncology nurse. 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 [onlcology nurses] have such a cool job”! I always remembered him saying this. I, too, believed it was so “cool” and that the kind of work they did was so important. I started my first oncology nurse position here almost seven years ago! After completing one year on the inpatient unit, I’ve been in outpatient for more than five years now. Jason was right, it is “cool” and I am very happy and fulfilled by this role! 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 that may happen to hear this and their loved ones are going through. Truly, I’ve been there. My favorite part of my job is the patients. 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. If I can pass along the message to those I care for that I understand their journey and how important it is for them to never forget how important their quality of life is then I’ve done my job. A job that I absolutely love.”
From where we sit
“I’m an oncology nurse because…” • I used to take my grandma to her appointments and admired the relationships the nurses developed with the patients and their family members • It is the perfect mix of personal and technical. You learn something new every single day. • In nursing school I knew that’s where I belonged. Cancer patients are some of the strongest people I’ve ever met and have met/had the opportunity to help so many amazing people along their journey
“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.” – ILEEN GARCIA, CHRISTUS ST. VINCENT CANCER CENTER
A message of gratitude
“To me, the nurses in the chemotherapy room [CHRISTUS St. Vincent Cancer Center]are there to help me live longer—which is exactly what they’ve done...and SO much more. I am always greeted with a smile at the front desk and I can’t help but leave with a smile from how caring, knowledgeable, and positive they all are. I am so grateful for their help getting me through this challenge. They have defined what caring really means and I truly cannot thank them enough for how they’ve impacted my LIFE.” – THEODORE 2016 C.A.R.E.
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here isn’t always a quote that can truly make things better.
s hip rt s n o lati Suppo e R &
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n.. o l a e H Dealing with a loss
Whether it be one’s job, a divorce, a shattered friendship, or a death of loved one- many will experience a “loss” in their lifetime. Any loss creates a void. Sometimes when you or a loved one is going through something like cancer, and a loss in anyway is experienced by you or others, it seems to amplify the anxiety of the diagnosis.
“I have cancer and one my friends just passed away”
Along your battle there may be large heartbreak if you lose someone close to you. Be honest about how their death affects you. Recognize that some extra support from friends, family, and professionals may be even more appropriate and needed at this time.
COPING AFTER A FIGHT
Coping with the death of a loved one after their cancer battle is something that many have said can only be understood with experience. When it comes to coping mechanisms, it’s healthy acknowledge that everyone grieves differently.
CONTINUING THE CONVERSATION: Talking with your children…again
“The way my mom handled her death with such organization and optimism has served as an example of what I want to be for my daughter.” – Linda
NOTE: Celebrate the little victories. Say “I didn’t t las cry today” or “I slept of night” & be proud es those mini mileston
It’s important to reassure your love for your children and affirm your spouse’s lack of suffering anymore. Acknowledge to them that life will be difficult moving forward, but that there will be life and joy in the home again. Recognize your individual child’s coping mechanisms and respond appropriately, as you did when cancer entered your lives.
BE HOPEFUL “The last breath they take here is the first breath they get to take in heavenly peace” –Widower
BE HONEST ABOUT THE IMPACT THE LOSS HAS ON YOU “I miss her every single minute of every single day. She wasn’t just my mother, she was my best friend! We were always so close. We shared everything in each of our lives.” – Daughter
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TAKE ACTION: “I went to therapy, and I became involved in the Pancreatic Cancer Action Network after the loss of my brother. I needed to fight back in his memory. I think that helped me more than anything.” – Sister
TIPS FROM THOSE WHO KNOW: “What Helped You Grieve?”
• Talking with other/their family members about them • Talking out loud to my loved one still • Listening to their voicemails, reading their sent text messages and handwritten letters • Remembering our times together. • Cry • Don’t cry • Pray • Therapy • Grief support groups • Memories • Volunteering for something cancer-related in their honor • Just hugging someone, not saying anything • Going to a grief support groups • Getting over the anger I had because she didn’t take proper steps to prevent this • Looking at pictures of them • Not looking at pictures of them • Turning my sadness into action in some way • Letting people hug and love me through all of my stages of grief • Knowing that I told them what I needed to before they passed There is no start date and 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.
LOCAL GRIEF SUPPORT GROUPS WHAT
CONTACT
CHRISTUS St. Vincent Hospital open four-part grief group
Susan Rush, 913-5240, susan.rush@stvin.org
Gerard’s House, peer grief groups for 3-21-year-olds, also for parents, caregivers
Janina Oliphant, 424-1800, ext. 23, info@ gerardshouse.org
General grief support for any devastating loss
Eileen Joyce, 428-0670, ej@eileenjoyce.com
New Vistas, From Grief to Laughter, grief class for those with acquired disabilities or chronic illnesses
Ken Searby, 471-1001, ext. 118, ksearby@newvistas. org OR Sarah Grace, 471-1001, ext. 131, sgrace@newvistas.org
St. John the Baptist Catholic Church, open grief groups
Deacon Jerry Reynolds, 983-5034, ext. 5, jreynolds@sjtbcc.net
Upaya Zen Center Metta Council, support group for loss of all kinds
Susan Benjamin, 982-9261, ArtTherapy@ aol.com
“I got to kiss my dad and tell him I love him. I told him that we would be fine if he was tired. I could tell he was done fighting. But I know that he is and will always be with me…and that brings me comfort” – Daughter
BEREAVEMENT SUPPORT GROUPS:
Ambercare | *Call 982-4098| *Ask for the bereavement counselor Gentiva Hospice | Rev. Star Sanchez, 9885331, Regina.Sanchez@gentiva.com PMS Hospice (for parents who lost a child) | Owen Kunkle, 988-2211, owen_kunkle@ pmsnet.org Del Corazon Hospice | 988-2049
RESOURCES Widowed Village widowedvillage.org/ For children’s grief issues www.childrensgrief.org | 505-323-0478 Online Community Support Hello Grief For children, teens, parents and mentors. www.hellogrief.org/ Associated with Comfort Zone Camp, a FREE grief camp for children ages 7 to 17
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P
eople don’t always need advice. Sometimes what they need is a hand to hold, an ear to listen, and a heart to understand them.” – UNKNOWN
ips t h s on r lati Suppo e R &
e... r e h t e B
What Do I Say?
Supporting a Friend or Loved One. When it comes to having a friend who is living with cancer/is a caregiver or somehow is 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 NOTE: their needs. with As a friend of one you If you or a loved one are affected by cancer- tear out/make a copy cancer/a caregiver,know of this section and give to your friends, in attempts to help give aren’t expected to that ow them an idea of how to support you best. what to say. But knto make you are expected to be a Because each person living with cancer (and members of their a strong attempt rson. family) is different, it is extremely important to be aware of how support for that pe
your words and actions are perceived.
WHEN TRYING TO HELP ONE WITH CANCER OR ONE CLOSELY AFFECTED BY SOMEONE’S DIAGNOSIS Worst Things People Can Say Or Do
Best Things People Can Say Or Do “What can I do to help?” Then make concrete plans on what you can do to help and be responsive when you get direction. “Let me know if you need anything” is often times vague. Ask specifically or give examples of what you will do and let them pick. If they tell you what you can do- be sure and act on it/be there if they reach out.
“Oh 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.
WITHDRAW - because you’re unsure of what to do or say. “Ghosting” a loved one during this time is not Say, “I’m sorry I really don’t know what something that they will overcome easily. It may be to say. I don’t know exactly what you harder to re-enter their lives at a later time. No matter are feeling or going through ” It’s okay how uncomfortable or guilty you may feel, their to be that organic. They know there isn’t journey is much tougher — and they need you to be much that can be said. Be truthful. They will responsive. appreciate how genuine you are. Treat them differently- Don’t stop telling them Say you love them and commend their things about your life or joking around with them. strength.The situation brings a lot of They need normalcy and the relationship that you insecurities to all involved. Tell them loving two used to have. They’ve lost a lot in their lives, don’t things and continue to encourage them have them lose the dynamics between the two of you through the situation. as well.
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• • • • • • •
DO:
NOTE: giver how their
Ask a care as bringing loved one is. Then ask LISTEN! Truly hear what your friend is telling meals or gift how THEY are doing. you. Undivided attention is a priceless gift. Let m cards or provide Acknowledging both the caring them tell you their concerns and fears without transportation to and who they are trying to FIX them. Just listen. for is important for your e appointments. friend to feel like they hav Give pulse checks. Stay connected and be Offer to babysit, someone looking out for consistent. Keep asking how things are going pick up kids at them as well. throughout (without prying) the journey. Set school or host calendar alerts reminding you to check in with your friend’s a quick “hello” or offer of help on a regular children for overnight visits, if applicable. basis. Arrange and pay for a housekeeper to come Be responsive. Reply to every call, email and in at convenient times. text in a timely manner. Send a text/call the next time you’re at the “You look good. How do you really feel?” pharmacy or grocery store to see if your friend It’s important to acknowledge that looks can be needs any items. deceiving. Plan some fun activities out of the house Affirm what they mean to you. “How and away from treatment. Make sure the are you doing…I’m serious. I really want to times and places are convenient and be know… because you are very important to understanding if your friend has to cancel. me.” Greeting cards, postcards and humorous Send random “thinking of you” notes and/ emails and texts are easy ways to express your or gestures, such as cards. Any outreach can love. show your love. Touch or hug your friend at every Keep your friendship a two-way street. appropriate opportunity (if that was common Spend time listening to your friend but also in your dynamic) to show them you care share updates on your own life. Whatever you Tell them you love/care about them. Even talked about before the cancer diagnosis will if they don’t have the energy to respond, your still be appropriate after. It helps with their message means a lot. sense of “normalcy.” Schedule visits or times to hang out in Apologize if you haven’t been there for them. advance – and with enough time for them Don’t give excuses. Just acknowledge your to prep (mentally and physically) for the absence in their time of need and show desire interaction. to remedy it. Laugh with them! Humor always brightens Do ask questions to show interest a day. Forgive them if they don’t ask about your life Help your friend focus on good feelings and as much, are less responsive, in touch with your moments of happiness. needs. It’s not that they care any less about Be there months…years after the you, it is just that sometimes they can’t get diagnosis. Your friend/loved one still needs their minds out of their own situation. you…(probably even more as time goes on.) Be clear when you offer to help, about what Attend (or start) a cancer-related event/ you can and will do, clean house, cook, such walk in their honor Those with cancer and their loved ones frequently talk about unintentionally cruel things that friends might say. Both the caregiver and the patient are fragile and vulnerable. Sometimes people think they are NOTE: being supportive and encouraging when they are actually diminishing If you have experienced f something similar yoursel your experience. “You’ll get through this and it will all be over soon, “for say one d love or with a just keep a positive attitude” is not always helpful. Allow people to have y The ”. case the was me this their own feelings, and be willing to listen without trying to “fix” them. will acknowledge that youies Each person needs to have their own experience and needs to feel afaren’t comparing two stor or minimizing theirs. firmed in that experience, whatever it is.
• • • • • • •
• • • •
•
• • • •
It is important to remember that a cancer patient and those in their lives had relationships before cancer hit. Those relationships are extremely important to maintain. The responsibility of maintenance just might be on you, as a friend a little more now. 2016 C.A.R.E.
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A BROTHERLY BOND “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 that they needed to hit the gym, stop being worthless, and change the world, etc., as most family-like relationships do. Be supportive. 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. If all else fails, just ask what they need because when it gets hard, and it will…that’s all you can do to show them you’re there for them.” – MATT
DON’T:
it against them if they are unresponsive to • Hold your outreach or less than congenial at times. If
• • • • • • • • •
a distance has grown in your friendship, the last thing they want to have is the guilt that they were the cause. They are going through enough, so don’t blame them or criticize them for being reclusive. Stare. They know they might look different. No need to bring more attention to it by how you look at them. Say “At least…” 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 still have a commitment and a healthy conviction of their beliefs. Stop sharing things about your life Play the compare game to someone else you know who has cancer Make their cancer/situation YOUR story. It’s not your place to tell others about it. Always ask permission to share news with others, and let your loved one know when you have done so. Rely on Social Media for interaction. If you have time to “like” things on Facebook, you have
• • • • • • • • • • •
time to send a thoughtful text message, email, or make a call. Only discuss their illness . Take more than 24 hours to reply to any outreach. They need to feel that you are responsive and available. Be offended if your friend declines an offer to hang out. Sometimes the energy just isn’t there. Offer “alternative” diagnosis or medical advice. Be overbearing with too many questions if they are unresponsive. It will be evident they don’t want to talk about it. Say “You’ll be fine”, “everything happens for a reason.” Sometimes overly optimistic reactions give the impression that you don’t understand the pain or severity of the situation. Talk about a friend/relative of yours that is sick/dying (unrelated to cancer). It comes off 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. Everyone has to do it their own way. 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. Wait for your friend to ask for help. Be proactive.
4 BEST RESPONSES TO A HURTING FRIEND
I. 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. II. Ask questions about feelings -“What did you feel when you first found out?” “What are you most scared of?” “What do you feel is hardest for those around you to understand?” III. Validate and empathize- “Your feelings are totally valid. I’m so very sorry you’re going through this.” IV. Ask how you can help-“What’s the best way I can support you right now?” 2016 C.A.R.E.
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Talking to your friend may have awkward silences or times where you are unsure of what to say. Always respond to them based on what they tell you. Use this flow chart to help give an idea of
how to direct the conversation based on what you are hearing/inferring from your friend. Your intent might be good but approach and how you say things are what can always be practiced.
“How Are Things Going?” Doesn’t want to talk: Fine. How are you (your loved one) feeling? Fine. Do you need anything? What can I help with? Nothing. Well know that I’m here and will be here if something, ANYTHING comes up. (Then Drop It And Change The Subject To Something That You Normally Would Talk About)
“I had and have great friends. Knowing that you have an army of friends behind you gives you strength and you just feel so empowered and like you can do anything. It really makes a difference.”
Feeling vulnerable:
Feeling overwhelmed:
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?
I/they just don’t feel good and we had a rough appointment this week What happened? What will make you feel better? (they tell you} (Continue to ask questions so long as they seem engaged/want to talk about it)
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 said next appointment) If talking to your friend is unnatural to you, write them a card or a letter to help explain your intentions and your commitment to being there for them during this tough time. Go to bronlea.com and “Letter to a Hurting Friend” 2016 C.A.R.E.
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Just everything Okay-let’s take it one things at a time. What is busy for you in terms of…(hit topics one by one) (they tell you)
Wow- it sounds incredibly tough. But you seem to be managing it all right. Keep it up. What do you need right now? What can I help with? {they tell you}
Now, is there anything you are most looking forward to? {they tell you} [Focus on that for a bit to get them thinking about something positive then act on whatever it was they said they needed, if possible]
B
e thankful for what you have. Work hard for what you don’t have
n... o k r o W
are s C ng es aT ki Busin of
Cancer + Career: Winning in the workplace
Managing a serious illness, such as cancer, can feel like a full-time “job” in itself. Add an actual job and career in the mix and there may be some increased challenges to navigate through. It is a catch-22 in that one knows they should be focusing on their health, but they can’t pay for their healthcare unless they work, which sometimes makes them feel worse, and so they need more health remedies…it’s a vicious cycle.
Before you approach colleagues, talk to your doctor specifically about how your illness can affect your career:
• Tell your doctor exactly what your job is and any unique circumstances you’ll be coping with. • Let your doctor know that it’s important to you to make decisions that are good for your health and your job whenever possible. • Ask for general ideas of how your diagnosis, medication or treatment could affect your job. • See if you can be flexible with the time you take your meds, in order to minimize any side effects at work. Ask about oral chemotherapy and other options that might be less disruptive to your work schedule. • Ask your doctor for advice on working during treatment.
POINTERS & IDEAS
◆ Communicate regularly with supervisors and coworkers 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 and productivity. ◆ Inform supervisors and coworkers if there’s any change in your condition or treatment that will affect your performance. If you need to take time off, stay in touch with one or two
Reasons people may choose to work during treatment:
• Health insurance comes with the job • The need to support themselves/family financially • A love for the job • The fulfillment/sense of normalcy in working • Or any combination of the above
Making work…work
If you plan to continue working while undergoing treatment, you can make the process easier for yourself - as well as your employer and co-workers. Plan. Prepare. Communicate.
Communication
A lack of communication can give rise to confusion and anxiety – or even mistrust and suspicion – whereas clear and constant communication can help build a world of reassurance that you are engaged and productive. people by phone or e-mail to keep your lines of communication open during your absence. ◆ 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].” If you need help, ask. It doesn’t convey weakness. It shows that you’re invested in ensuring the best outcome for any given project.
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Looking at the laws
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. Cancer is a very individual disease, and can be handled how you want. Coworkers only need Family and Medical Leave Act (FMLA)- deto know what you want them to. pending on the location, FMLA may protect “I may need a limited/flexible schedule” and then give as much information as your job and benefits for unpaid absences up to necessary.”
12 weeks (and it doesn’t have to be used all in a row) NOTE: Using PTO during FMLA absences are the only way to get paid, but the job is 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 secured under law. (For one with cancer or their peak-performance hours as possible. You can also schedule important meetings and caregiver)
Map Out your work week Keep careful notes about the way you feel
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.
• Complete paperwork from your company’s HR department to become eligible.
Find Optimal Times For Treatments Logging and reviewing notes can help
• If FMLA has been exhausted, look into longterm disability coverage.
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 Americans with Disabilities Act (ADA) -in hours after treatments, for example, schedule 2 p.m. appointments, so you’ll be most cases, companies that have 15-plus emoff work when that fatigue hits. Or if your body needs a few days to recover from ployees are required to make “reasonable accomtreatment, try to schedule sessions for Friday afternoons.
modations to help you do your work by—allowing time off for appointments or allowing
“When I would go in for chemo, I would feel great for two or three days. Then my energy flexibility with your schedule. went lower and lower for about a week and a half. My energy would rise and just about when I was feeling “normal”, Bam! I had to go in for another treatment.” IT IS ILLEGAL FOR COMPANIES TO — Employed during treatment
TERMINATE AN EMPLOYEE FOR HAVING AN ILLNESS AS LONG AS THEY ARE STILL ABLE TO DO THEIR JOB.
Learning to say “No” effectively
Everyone has limits and it is important to take the time to figure out what yours are and what triggers them, especially while juggling both work, cancer treatment, and recovery. In personal lives, it may be easy to tell someone that space is needed If you feel an injustice in the workplace has ocor you prefer to be left alone. However, work culture often makes that hard to do curred, file a complaint with the Equal Employmaking it critical to find productive ways to communicate your limits. Learning to ment Opportunity Commission (EEOC). set these boundaries on-the-job might enable you to decline certain types of requests, such as staying late for non-essential tasks or being given new projects to complete. Although it can be difficult to say no, figuring out how can help you become a better employee; you won’t be over burdened with extra work, and you won’t feel trapped by every task you receive. If you are working through cancer, you need to clearly ask for what you need from your employer and coworkers, and remember that your top “job” is your own well-being. 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: “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.” For more support in identifying what triggers your limits consider talking to a social worker who can also help you craft personalized language to communicate your needs at work.
Items to keep at work • A notebook, to jot your impressions, notes, questions for the doctor, etc. • Digital recorder or tape recorder * Post-It Flags to highlight important pages • Pens, pencils & highlighters • Books, newspapers, magazines – or portable work projects – for the waiting room of appointments Remember, the idea is to keep all your info handy so that you have everything you need ready for doctor’s appointments – and you can spend your time at work focused on work, not scrambling to find paperwork pre-appointment.
NOTE: 44 % of people newly diagnosed in 2014 were of working age.
When career and cancer collide There might be a time where your job doesn’t fit into your healthcare anymore and for one reason or another your focus cannot be split between the two anymore. 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.
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You worked at least a year providing for our national security at the AEC/DOE Labs. You later got cancer. Now I will help you or your direct survivors as I’ve done for 2,200 very happy families, 800 of them in New Mexico. $150,000 to $400,000 lump sum entitlement awards are available for 23 common types of cancer. Let me ask a few simple questions for five minutes. I’ll give you a free and frank assessment as to whether I can help. I’m not a lawyer and this is no lawsuit. I am a national expert on EEOICPA entitlement. You get me, the professional, not a low paid paraflunkie. I unravel the frustrating red tape so you don’t have to. Nobody does it better. You get paid directly by the U.S. Treasury. If so, then you pay me just 2%. No appeal fees. No fine print. Already got your $100,000 RECA award as a uranium miner, miller or transporter? I might now be able to get you another $50,000 under EEOICPA Part B, plus up to $250,000 added Part E benefits (impairment or survivor awards).
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B
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Ins & outs of paperwork
Legal/insurance issues
Many people living with cancer feel overwhelmed with the complex rules about paying for treatments. 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. It’s also a good idea to bring a trusted friend or family member with you so they can help note down the answers: • Will my insurance cover my treatment? NOTE: s • Does my health insurance company need to approve the treatment plan before I Don’t trust website begin treatment? about who is in the network—always • Is the treatment facility you are recommending in my insurance plan’s network? call your insurance to • How much will my out-of-pocket cost be? company. Be sure t match up treatmenls. • What if I can’t afford the out-of-pocket cost? Will I be turned down for treatment? dates insurance bil • Are my medications on my health insurance plan’s preferred drug list? • What is my prescription co-pay for each medication? • Will I be billed separately for laboratory tests, such as blood tests? Are they covered under my health insurance? • Do you offer any payment plans? Cancer Services of New Mexico’s free Legal, Insurance, & Paperwork Assistance (LIPA) Program is the best place to get clear answers to these questions. It is the only service like it in the state, providing comprehensive assistance with cancer-related legal, insurance, and paperwork issues.
The LIPA program has three major elements: 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.
LIPA Website www.nmcancerhelp.org
This provides links to a wealth of resources to help with legal, insurance and financial issues.
Cancer Services of NM’s Patient Navigation program can assist patients and their families with a wide range of support services. Whether you need help applying for Social Security Disability, help with insurance-related issues or guidance/referrals concerning other non-medical issues, CSNM is here to help. The LIPA program is provided at no cost to New Mexico cancer patients and survivors and their family members and loved ones. Contact Stephanie Michnovicz, Program Manager at 1-888-668-2766 or visit www.nmcancerhelp.org. 2016 C.A.R.E.
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LET’S GET LEGAL 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 cancer 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. | www.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 People that can connect you to insurance case managers: Contact Stephanie Michnovicz, Program Manager, Cancer Services of New Mexico | 888-668-2766 Karen Gano, LCSW, Social Worker, CHRISTUS St. Vincent Oncology | 505.913.5731 Karen.gano@stvin.org Jessica Quiring, Patient Navigator, American Cancer Society | 505-262-6018 jess.quiring@cancer.org Check out www.bewellnm.com and www.nmcancerhelp.org to become more familiar with insurance plans. Go to www.healthcare.gov/glossary/ for a comprehensive list of insurance-related terms.
We are Here to Help You Plan Thoughtfully by Providing You with Professional Legal Guidance Proud supporters of our community!
CUDDY & McCARTHY, LLP Attorneys at Law 1701 Old Pecos Trail Santa Fe, New Mexico 87505 (505) 988-4476
7770 Jefferson Street, NE, Suite 102 Albuquerque, New Mexico 87109 (505) 888-1335
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L
ove, laugh, leave a legacy.” ~CANCER SURVIVOR
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Planning through the pain
Gaining peace of mind
One of the many fears that comes with cancer is the “loss’ of aspects of your life. There are certain ways where one can feel in control. Planning out some of their preferences and outlining some of their 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. Work on these items while you have energy, strength, and feel healthy. Take care of these things so that you can move on and focus on enjoying life!
“When my father asked his nurse practitioner if he should plan, she said ‘truthfully, my crystal ball is terrible. I wish it was better. But it doesn’t ever hurt ANYBODY to put their ducks in a row I recommend that at any stage…to anybody.’ It was such a candid, helpful and beautiful response to such a difficult question.” – CAREGIVER
People are uncomfortable talking about Advanced Care Planning or End-of-Life planning. These discussions can and should occur during routine visits to physicians, or could occur during estate planning with a lawyer or possibly even an estate-planning accountant.
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. NOTE: Have these conversations withal loved ones in a casuyou environment where(i.e. can think clearly ital sp stay away from ho ere beds, or days wh illness is heavy)
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. Beyond that are many smaller decisions that a person can make in advance if they want to. If family members aren’t cooperative in your planning objectives, find a close friend or other family member to discuss it with you. 2016 C.A.R.E.
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The gift
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. If you don’t have a power of attorney, living will, or a standard written will documents in place, and have no identified “agent” the doctor is legally bound to go to these individuals 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
A WORD FROM THE EXPERTS: Be sure to have all of your estate planning documents in place and prepared by an attorney (to ensure validity under state law), which include: • Will • Power of Attorney • Advance Health Care Directive • Authorization for US and Disclosure of Protected health information When meeting with your attorney, take the following with you: • Information on assets • Person(s) you wish to benefit • Person(s) you wish to identify as your personal representative, trustee, and agent • Copies of any estate-planning documents, pre-nuptial agreements and relevant court orders
Leaving YOUR legacy
Everyone has a legacy that they want to pass on. Whether it Sandra J. Brinck Jim Rubin be to family members or to Named one the strangers, for many the desire “2016 Best Lawyers in America” to be remembered and to live by U.S. News and World Report on in others is a strong. For all of us, life is indeed short; s go Cuddy & McCarthy Law Firm to the movies 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. Leaving a legacy: Creating something that will last forever This group will provide a unique opportunity for those with a serious illness share your stories and reflect on your life and its gifts, while still planning for your future. Each week will incorporate a different idea (story-telling, creative writing, estate-planning, etc). The thoughts of legacy and message to those you love will be put into action and made to last forever. Fridays 3:30pm- 5pm February 19-March 25, 2016 Call 505-913-3820 to reserve your spot. 490-B W. Zia Road, Suite #4, Santa Fe, NM
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NOTE: ling Free-flowing journa ) is ing dit f-e sel t ou ith (w to a very organic way gs. express your feelin s Phone voice memo sy ea and video allow for ges recording of messa share that one wants to with others.
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Cancer costs
A cancer diagnosis brings about more appointments, more medicine, and therefore more cost. The financial implications of cancer is something you should address up front. 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 health care team. Some common costs include: Doctor visits Lab tests Clinic visits for treatments
Imaging tests/scans Radiation treatments Medication
Hospital stays Surgery Home care
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 to easing the stress of a cancer diagnosis. Once you have a general picture of what your treatments will cost, you can ask these important questions: Will I be able to get short-term or long-term disability payments?
If you’re employed, contact your human resources department. Otherwise, contact the Social Security Administration at 800-7721213, www.SSA.gov
What public or private resources will I be able to count on?
See page ???, for financial assistance for New Mexicans with cancer. Also, the Centers for Medicare and Medicaid Services provide information about patient rights, prescription drugs and health insurance. Contact 800-MEDICARE, www.medicare.gov
Where can I cut back expenses, and what other changes can I make so my money lasts through 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.
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It’s a promise.
CHECKING | SAVINGS | LOANS V OT E D B E S T O F S A N TA F E 2 0 1 5
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Keeping 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.
You can work with this simple checklist, and update it or add to it as time goes on: 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 4 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 the 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. To get connected to a financial counselor, contact Karen Gano, LMSW 505-913-5731 |CHRISTUS St. Vincent Counseling Support *FREE* TAX HELP Get your 2015 Income Taxes prepared at no cost until April 15th Contact Peter Doniger 505-670-6835 | taxhelpsantafe@gmail.com
NOTE: are TWO Statements and billsseparateSING TH T EN DIFFER statements but remember that o bills. Put int n tur ally eventu on in all financial informatiized and an org t Ge r. de one fol iver, friend, review with a careg rt such as po sup or e on loved ator, navig Scheduled transportation (social work, patient . counselor) Laundry Housekeeping Rehabilitation Palliative hospice services available
Our Assisted Living and Home Health Services are tailored for Short Term Respite Care and Longterm Chronic Care.
24/7 Nurses on site 3 nutritious meals daily w/choices Recreational activities Scheduled transportation Laundry House keeping Rehabilitation Palliative hospice services available
Secure Memory Care Community is comprised of large private studio apartments with fully equipped ADL bathrooms.
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S
upporting…caring…loving, and creating meaningful time together.. That’s what it’s all about.”
... t r o f m o Find C
~ CAREGIVER
are s C ng sines i k Ta f Bu o
Handling Home Health & Hospice
Home health 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.
Hospice care
NOTE: ent Hospice and treatm don’t co-exist ves one If condition impro come to n tio op the s ha off of hospice. If sixbut d months have passes, one condition remain ve.. will not have to lea
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 and is used when one’s life expectancy is approximately six months or less, if the illness runs its predicted course. Hospice care is focused on comfort and support for the patient and the whole family. 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 and is responsible for overseeing most of the care. For others without this support, organized care programs can lend a helping hand. Hospitals, independent hospices, nursing homes and long-term care facilities are all other potential hospice care options.
Hospice care provides:
• Pain and symptom control • Supervision of care at home or in a facility • Spiritual care • Coordinated family meetings • Bereavement care for grieving loved ones after a loss
Finding hospice providers
• Ask your doctor. • Contact the local Department of Health to get a list of licensed agencies. “My mother’s caregiver was exceptional. Her and my mother had a great friendship filled with laughter, joy and respect. Even though I wanted to take care of my mom on my own, it was definitely a plus to have a guiding hand to help.” – LH
What is anticipatory grief?
Anticipatory grief is a feeling of grief before a death and 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 a recovery is not a possibility.
“Hope”
When hospice enters the situation, hope is not lost--it adjusts. A hope of recover transforms into a hope for time together that is meaningful, quality, and comfortable. 2016 C.A.R.E.
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F
ighting cancer the best way we know how...together.
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Mark your calendar FEBRUARY
National Cancer Prevention Month | February 4th -World Cancer Day
APRIL
Spring Family Cancer Retreat *FREE* (Cancer Services of NM) | April 22-24 Marriott Pyramid North Hotel, Albuquerque | 505-239-4239 | www.CancerServicesNM.org Provides a weekend of education, reflection, and rejuvenation for adult cancer patients/ survivors, their family members and primary caregivers in a relaxing environment
MAY
Black & White Ball (American Cancer Society) Fundraiser| May 14 | Santa Fe | www.sfbwb.org Fundraiser/Gala to support American Cancer Society programs & research (food, dancing, live and silent auctions)
JUNE
Polly’s Run | June 4 - Albuquerque | Albuquerque | www.pollysrun.com Annual 5K and Kids’ K road race honoring Polly Rogers and all the loved ones we have lost to pancreatic cancer. The purpose of the race is to raise awareness and funds for pancreatic cancer research.
JULY
Relay for Life (American Cancer Society) | July 22nd | Santa Fe
SEPTEMBER
Spring Family Cancer Retreat *FREE* (Cancer Services of NM) | September 9-11 Marriott Pyramid North Hotel, Albuquerque | 505-239-4239 | www.CancerServicesNM.org Casting for Recovery | September 23-25 | 802-362-9181 | www.castingforrecovery.com Opportunity for women who have been affected by breast cancer (at any stage) to spend time in a natural setting and learn fly-fishing/Counseling and medical information available over the weekend. *Apply by July 15, 2016
OCTOBER
Making Strides Against Breast Cancer (American Cancer Society) October 8th | Santa Fe | MakingStridesWalk.org/SantaFe Celebrates and commemorates lives touched by breast cancer Purple Light (Pancreatic Cancer Action Network) | October 30 |Albuquerque www.purplelight.org
NOVEMBER
Light The Night (Leukemia & Lymphoma Society) |November 5th | Albuquerque www.lightthenight.org/nm/ Celebrates and commemorates lives touched by blood cancer
COMING: FEBRUARY 2017 – Sweetheart Auction (Cancer Foundation for NM)
Santa Fe | cffnm.org/sweetheart-auction/ Fundraiser/Gala to support Cancer Foundation for NM’s programs & services for local families (food, live and silent auctions) 2016 C.A.R.E.
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here is no way to identify one favorite thing Tconstantly about being a volunteer and facilitator. I am in awe at the courage and flexibility of cancer patients and friends and family associated with our cancer patients.
~ RONNI, CANCER FOUNDATION
FOR NEW MEXICO VOLUNTEER
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. . k c a b e Giv
Make a difference
Inspire Others
Throughout 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 they also are 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 this team of caring ambassadors! Cancer Foundation for New Mexico in Santa Fe
• Workers at the Sweetheart Auction in February • Personal support for patients in the chemotherapy treatment area • Fluent Spanish speakers to help translate during exams and treatment Contact Caroline Owen, 505-955-7931, ext. 3
Cancer Services of New Mexico
• Volunteers and exhibitors at spring and fall Cancer Retreats Contact Mike Capeless, mike@cancerservicesnm.org, 505-239-4239
UNM Cancer Center
Volunteer Program, 505-925-0188
American Cancer Society
• Look Good Feel Better program -Licensed cosmetologists to provide makeup courses and free makeup • Reach to Recovery program- Breast cancer survivors to provide peer support through the program • Road to Recovery program • Volunteer drivers are needed in Santa Fe to provide transportation to and from treatment for cancer patients who do not have a ride or are unable to drive themselves. For more information on these programs and volunteer opportunities contact Shirelle: 505-262-6016
Making Strides Against Breast Cancer
• Planning committees in Santa Fe and Albuquerque Contact Jessica Duncan,jessica.duncan@cancer.org, 909-534-2565
Relay for Life
• Planning committees in Santa Fe and Albuquerque Contact Manual Luna, manuel.luna@cancer.org, 505-262-6022
Black & White Ball Cancer Action Network
Contact Joe Cordova, joe.cordova@cancer.org, 505-262-6015 Contact Lacey Daniell, lacy.daniell@cancer.org, 505-262-6014 Advocating for cancer-fighting policies and visit www.acscan.org/nm
“Thank you to the volunteers at the Cancer Center who were so great during the chemo and radiation treatments. They are very empathetic and supportive to everyone who is receiving treatment – they are greatly appreciated and made a difference in my journey!” – CANCER SURVIVOR 2016 C.A.R.E.
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Hours: 9 - 5 Monday - Friday | 10 - 4 Saturday | Closed Sunday
TLC C
We work on all brands of RV’s, Horse and utility trailers. Our services include the following: • Winterizing and De-Winterizing • Roof Resealing Damage Repair • Plumbing • Electrical; 12 Volt, 120 Volt and Solar • Awning Repair and Replacement • Wheel Bearing and Brake Service • Liquid Propane Inspection • Water Heater Service • Battery and Charging System Service • Refrigerator Service • Air Conditioning Service • Collision Repair
Tender Loving Coupons TLC C
Tender Loving Care Coupon
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LOW COST!
Dry Cleaning, Laundry & Leather Cleaning Service!
720 St. Michael’s Dr., Suite K 505.438.2524 Hours: Mon-Fri 7am-6pm Sat. 10am-2pm
Let us take care of your clothes while you take care of yourself
TLC C
10% off food, drinks & Elixirs
TLC C
Tender Loving Care Coupon
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Tender Loving Care Coupon
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Tender Loving Coupons Park Avenue Cleaners
720 St. Michael’s Dr., Suite K 505.438.2524
Tender Loving Care Coupon
Hours: Mon-Fri 7am-6pm | Sat. 10am-2pm
Exp. 12.16
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• Any Garment Pre-spotted, Cleaned & Pressed. • Same Day Service Monday thru Friday • Quality Work • Alterations
Hours: Monday through Saturday • 8am to 6pm To Go Orders Available
Exp. 12.16
Exp. 12.16
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505-474-6336
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TLC C
2801 Rodeo Rd., Suite B-11 Santa Fe, NM 87507
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TLC C
505-983-LOVE (5683) www.lightvesselsantafe.com
Tender Loving Care Coupon
Love Yourself Cafe Located in the DeVargas Center 199 Paseo de Peralta - Suite D | Santa Fe, NM 87501
Residential and Commercial Window Cleaning
Resid
Licensed and Insured Member of the Better Business Bureau
Year Round Window Cleaning
TLC C
(505) 982-6210
Locally owned and opera schedule your FR
Exp. 12.16
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Locally owned and operated for over 20 years, please call us to schedule your FREE window cleaning estimate.
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Screen/Sill Cleaning
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Residential and Commercial Window Cleaning
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Licensed and Insured Member of the Better Business Bureau
State Employees Credit Union is proud to support cancer education & research in the State of New Mexico.
800.983.7328 | SECUNM.ORG
LO CA L C O N F I D E N C E
NORTHERN NEW MEXICO’S PREMIER
ALL-INCLUSIVE CANCER CENTER
DELIVERING COMPREHENSIVE, COMPASSIONATE, STATE-OF-THE-ART CARE TO NORTHERN NEW MEXICO CANCER PATIENTS. CHRISTUS St. Vincent Regional Cancer Center offers superior care through the latest medical technology and highly-trained providers working in a collaborative care environment. When facing cancer, family and a strong support network are key to aiding in recovery. Treatment at CHRISTUS St. Vincent means patients and their families have access to the best resources while receiving treatment close to home. With advanced technology and a newly remodeled chemotherapy suite, our Cancer Center offers our community not only superior care but additional services, such as nutritional guidance, social work, acupuncture, and palliative care.
FOR MORE INFORMATION OR TO MAKE AN APPOINTMENT CALL
505.913.8900 CHRISTUS ST. VINCENT REGIONAL CANCER CENTER 490A WEST ZIA ROAD • SANTA FE, NM 87505 WWW.STVIN.ORG