Cancer Wellness Magazine: The Women's Health Issue with Alina Mehrle (Fall 2022) by cancerwellness

FALL 2022

ALINA MEHRLE

DANCING DIVA ABBY LEE MILLER IS DANCING TO A DIFFERENT TUNE

THIS ARCHITECT-TURNED-BEAUTY GURU FOUND INSPIRATION IN HER CANCER JOURNEY

US $10.00

LINE BY LINE A POET FINDS PEACE DURING THE PANDEMIC

“ Research is the reason I can see my kids grow up.

“

KATE, DIAGNOSED WITH BREAST CANCER IN 2019

#ResearchIsTheReason Donate at bcrf.org

See more reasons for research and share yours at BCRF.org

Photo provided by CURE Childhood Cancer

FALL, FABULOUS FALL!

ith the leaves changing and the arrival of the fall season, I hope everyone can get cozy and cuddle up with the latest issue of Cancer Wellness, our Women’s Health issue. We’re so excited to feature cover star Alina Mehrle (p.40) — someone who knows firsthand the complexities of being diagnosed with cancer as a young woman. I hope you’ll enjoy reading about her incredible journey of entrepreneurship throughout her cancer experience. Issue 16 also features inspiring stories from female cancer warriors and thrivers everywhere. Decades after receiving treatment for childhood cancer, Sophie Tsairis (p.26) details her experience with early menopause as a woman in her 30s. Her story is harrowing but also empowering, and we’re so glad she shared it with us.

This issue features some really creative work — from the healthy, delicious recipes assembled (p.12), to a wellness center that combines relaxation with healing (p.23), to Sara Machnik, who found an outlet to help process her breast cancer diagnosis through poetry. Sara’s work has touched many people across the world and provided her with another layer of support she never expected. We urge you to check out her poems on page 31 and connect with her on social media to read more. We also want to shout out the many companies and organizations fighting for children who are also cancer warriors. CURE Childhood Cancer (p.56) is dedicated to providing research funding and support for children with cancer and their families, while Jeeva Informatics (p.58) is widening access to adult and pediatric clinical trials through telehealth. As the weather gets colder and the days grow shorter, I hope that we all are able to sit back and unwind this season and, most importantly, take care of ourselves.

Natalia Espinosa Editor-in-Chief nespinosa@cancerwellness.com

Cancer Wellness

FALL 2022

BEAUTY BY DESIGN

CW ONLINE

CW AGENDA

NUTRITION 12

HAPPY HARVEST These comfort foods have a healthy twist to help you celebrate the changing season.

HEALTH 20

BEST TOOTH FORWARD Jill Meyer-Lippert, RDH, makes the case for being proactive about your oral health during cancer treatment.

MIND & BODY 26

IN HEAVINESS AND LIGHT Two decades after treating her childhood cancer, Sophie Tsairis discovers the culprit behind new symptoms: early menopause.

AROUND TOWN 32

FIND YOUR BASE, REACH YOUR SUMMIT Base2Summit summer camp provides grounding, growth and adventure for young adult cancer survivors.

ENTERTAINMENT 46

DANCING DIVA Abby Lee Miller’s cancer diagnosis doesn’t slow her down.

BASEBALL AND BASAL CELLS Johnny Bench of the Cincinnati Reds is “on the ball” when it comes to sun protection.

INNOVATIONS & RESEARCH 50

WONDER DRUG? Overwhelmingly positive results from a clinical trial are one big step in the right direction for eradicating cancer.

RESOURCES 58

HEALING FROM HOME Virtual clinical trials expand access while saving time and money for doctors and patients. Cancer Wellness

CAYLEI VOGELZANG Founder NATALIA ESPINOSA Editor-in-Chief + Creative Director CATHERINE EVES Editorial Director FEATURES Editor-at-Large MIRELA KOPIER Editorial Associate FRANCESCA HALIKIAS SOCIAL MEDIA STRATEGIST CATHERINE COYKENDALL CONTRIBUTING WRITERS SARAH DIMURO, MAURA KELLER, MEGHAN KONKOL, LAUREN LOPRIORE, JOANNA MORALES, ESQ., ELYCE NEUHAUSER, WHITNEY REYNOLDS, NICOLE SCHNITZLER, AMBER SULLIVAN, SOPHIE TSAIRIS COVER PHOTOGRAPHER RICARDO BEAS EDITORIAL ADVISORY BOARD SHIKHA JAIN, MD, FACP GAIL PRINS, PHD GLEN STEVENS, DO, PHD OPERATIONS MANAGER ISABEL GARCIA SYSTEMS ADMINISTRATOR JACK SAXE-STARAL EXECUTIVE ASSISTANT ANTONIJA ROGIC DISTRIBUTION Cancer Wellness is distributed nationally through hospitals, support networks, select nurse navigators, subscriptions, and other outlets. If you would like to know more about distributing Cancer Wellness in your facility or group, please email: info@cancerwellness.com

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ALL RIGHTS RESERVED. NO PART OF THIS PUBLICATION MAY BE REPRODUCED IN WHOLE OR PART WITHOUT PERMISSION FROM THE PUBLISHER. THE VIEWS EXPRESSED IN CANCER WELLNESS ARE THOSE OF THE RESPECTIVE CONTRIBUTORS AND ARE NOT NECESSARILY SHARED BY CANCER WELLNESS AND ITS STAFF.

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#cW MANTRA

“I am not a cancer patient. I am not merely a survivor, I am a cancer rebel. Let the revolution begin.” – SARA MACHNIK Cancer Wellness

cW Online These days, we’re majorly online, and maybe that’s because there’s a little something for everyone. Check out some of our favorite Instagram accounts — by and for the cancer community.

@BEBRIGHTPINK

Bright Pink aims to ensure equity, model proactivity and promote agency for young breast and ovarian cancer warriors. The social leg of one of our favorite cancer charities features cancer fighters doing amazing things mixed with news about upcoming events, new innovations and treatments in the cancer research world.

@THECANCERPATIENT

Cancer, but make it f*cking hilarious. With a mix of humor and no-holds-barred real talk, this account really shines through its memes, which are geared specifically for the cancer community — because, as every person in treatment for cancer knows, sometimes the only thing you can do is laugh.

Cancer Wellness

@IHADCANCER

This uber-popular insta for ihadcancer.com features words and pictures from the wider cancer community — before, during and after treatment. Their website is a home for people looking to share their experience, talk with others and find some sort of solace throughout their journey.

@MYCANCERCHIC

Anna Crollman’s bright and cheery feed has garnered her a loyal following by featuring both the good and the bad of life after cancer. She aims to empower cancer survivors to find beauty in their “post-cancer body,” and we can’t get enough of her down-to-earth personality and affinity for the color pink.

The cW Agenda ALL THE NEWS YOU NEED TO KNOW A PLUS FOR PREMMPLUS

Developed by researchers and physicians at Dana-Farber Cancer Institute, an online tool known as PREMMplus quickly and accurately identifies people who should undergo testing for inherited genetic changes — specifically, ones that increase the risk of developing certain cancers, simply by asking users health-related questions.

LIVE(R) AND LEARN

Investigators at Cedars-Sinai Cancer have created a blood test that uses the same polymerase chain reaction technology, made commonly available during the COVID-19 pandemic, to detect the most common form of liver cancer at an early enough stage that cure is possible.

FASCIN-ATING

A study published in eLife has shown that a protein called fascin acts in the control center of cancer cells and influences their ability to repair themselves, grow and move. Conducting more research into how fascin works may help scientists learn how to block its action when it comes to cancer.

SUGARY SWEET

Scientists at Australia’s Griffith University’s Institute for Glycomics are researching the ability to identify unique sugars on ovarian cancer cells that could help prevent the spread of cancer and improve treatment options. These sugars may be potent therapeutic targets in the fight against the spread of ovarian cancer.

OILED UP

According to an analysis published in PloS One, components of olive oil offer protection against several types of cancer. The study found significant disparities in cancer risks between people who consumed olive oils and people who did not. Olive oil is rich in monounsaturated fatty acids, squalene and phenolic compounds.

MOUTHING OFF

Project grants from the Canadian Institutes of Health Research will help develop research about the role bacteria play in mouth sores caused by chemotherapy by mimicking bacteria combinations found in the mouths of children with cancer. This will help researchers identify bacteria that may offer protection.

THYMUS-N’T STOP NOW

There may be news on the horizon for thymic cancer, with Weill Cornell Medicine developing a new preclinical model that revealed how a common mutation found in thymic epithelial tumors spark their formation. The model may be able to speed the development of targeted therapies for cancer of the thymus gland.

GO GREEN

Research at Nippon Medical School observed that walking in nature reduces stress and blood pressure far more effectively than walks in urban settings. Plants can boost our immune systems and raise our number of natural killer cells, which seek out and destroy tumor cells.

TO THE SCREEN

The National Cancer Institute is awarding $23 million to four academic institutions to establish centers that will conduct research on the role of telehealth in delivering cancer care. The research will study the role of telehealth in fields ranging from prevention to screening; diagnosis to treatment; and survivorship.

Cancer Wellness

THE WARRIOR

Linsey Maughan AS TOLD TO NICOLE SCHNITZLER

Cancer Wellness

was 23 years old and a graduate student in Gainesville, Florida, where I was pursuing my MFA in poetry. I was starting my second year of school, and I found a lump in my breast. Initially, I researched causes of breast lumps and assumed that it was probably a cyst, based on what I was reading and based on my age, and I wasn’t very worried about it. But after about two months when it hadn’t gone away, I had a mammogram and an ultrasound, and the imaging results made it very apparent that it was likely breast cancer. Soon after, a needle biopsy confirmed it. It was a really blindsiding and shocking piece of information to receive. And it was a time in my life when my peers weren’t necessarily going through health issues like that. So although I had people around me who loved and supported me, I felt alone in the kind of issue I was grappling with. The cancer had spread so far within my left breast that the doctors pretty quickly recommended a mastectomy. I underwent this surgery in December 2006, halfway into my final year of school. Because of this, and all of the appointments surrounding it, I worried a lot about graduating on time. But I was determined — I wanted to finish alongside my classmates and get on with my life from there. And with the help of teachers and fellow students, I was able to. Shortly after I graduated, I underwent a second voluntary mastectomy as a precautionary measure, as well as breast reconstruction for both breasts. During my final semester, I was in a poetry workshop and I mustered the courage to write a poem about my cancer experience. But to write something then that I would share with others felt overwhelming to me. I did journal here and there, and over the next couple of years, I would occasionally write something that read more like nonfiction — scenes of what my cancer experience had entailed. Around that time, I went to a book launch party where I spoke with the author and shared more of my story with her. She looked at me and said, “I think you have a book about your body.” And that caused a lightbulb to go off. I started looking at all of the journal and blog entries I had written over the last couple of years, and I assembled them in a document in chronological order. In total, it amounted to about 50 pages — I was shocked. I thought to myself, “Maybe I am writing a book and didn’t even know it.” That was the start of my memoir project. Right now, I have a manuscript that I’m revising and planning to pitch to agents soon. It tells the story of my cancer experience, but also the story of another bodily injury I endured. It also shares the cancer experiences of three women who had been guiding lights in my life, and the ways in which their illnesses, in turn, invited me to be there for them. The book is about body image, self-acceptance and identity. It is also about relationships — how women experience diagnoses at different stages of their lives, and how we can support each other through the process. I’ve always been someone who has been strengthened and deeply moved by reading other people’s stories. I think it’s a beautiful gift we can give each other to share our experiences — the true stories, the good and bad things that we’ve lived through, and how we have persevered in our own ways. Knowing what other books have meant to me, it’s very meaningful for me to contribute my own story in that way. And I hope that this is a book that helps others — that when they encounter it, they, too, can take something meaningful from it.

Inspiring the Nation ONE TOPIC AT A TIME. Cancer Wellness

y p p a H rvest a H

These comfort foods have a healthy twist to help you celebrate the changing season. BY AMBER SULLIVAN

Chef Amber Sullivan moved to Los Angeles six years ago and discovered her love for farmers’ market-driven California cuisine. Since then, she has worked her way up through the local culinary scene. Beyond the restaurant industry, Amber has worked as a private chef, developed menus and recipes as a consultant, taught cooking classes, catered events and promoted food pop-ups out of her home in Silverlake. She is most inspired when walking through a farmers’ market, finding unique seasonal ingredients for innovative and healthy but flavorful dishes. Amber loves the act of cooking for others; seeing people happy and enjoying their food feeds her soul. If you’d like to view some of chef Amber’s work, visit her food Instagram, @eatbyhand. 12

Cancer Wellness

NO-BAKE APPLE PIE TRUFFLES pictured on previous page Yield: 4 servings

INGREDIENTS

1 1/4 cup almond flour 1/2 cup crushed pecans 3 dates, pitted and chopped 2 tbsp maple syrup 1/4 tsp ground cinnamon 1/8 tsp ground nutmeg 1/8 tsp ground cardamom 1/8 tsp ground ginger 3 tsp applesauce Pinch of sea salt

DIRECTIONS

1. Add all ingredients to a large bowl; mix with a wooden spoon until fully combined 2. Spoon about 1 tbsp of mixture into clean hands, and shape into balls 3. Place ball on parchment paper and continue until mixture is gone; place in the freezer for 1 hour to harden before eating 4. Store in the fridge or freezer in an airtight container

ALMOND FLOUR PB&J PANCAKES Yield: 2 – 3 servings

INGREDIENTS

Berry Compote 1 cup chopped strawberries 3/4 cup blueberries 1 tbsp maple syrup Juice of half a lemon Almond Flour Pancakes 1 1/2 cup almond flour 1 tsp baking powder 1/2 tsp salt 1/2 tsp ground cinnamon 2 eggs 14

Cancer Wellness

1/2 tsp vanilla extract 1/2 cup oat milk (or milk of your choice) 1 tbsp maple syrup Peanut Butter Maple Glaze 1/4 cup maple syrup 1 1/2 tbsp creamy peanut butter

DIRECTIONS

Berry Compote 1. In a saucepan over medium-low heat, add chopped strawberries, blueberries, maple syrup and lemon juice 2. Bring to a simmer and use a wooden spoon to mash the blueberries; stir until the mixture thickens, roughly 10 minutes 3. Turn off heat and set aside Pancakes 1. In a medium bowl whisk together eggs, milk, maple syrup and vanilla extract 2. In a separate bowl whisk together almond flour, baking soda, salt and cinnamon 3. Pour the wet mixture into the bowl with the dry ingredients, and combine; stir until smooth, and let batter sit for 5 minutes 4. Coat a pan with coconut oil or butter and set over medium heat 5. Once the pan is hot, ladle or spoon about 1/4 cup of pancake batter to form each pancake 6. Cook for about 2 minutes, until the surface bubbles; flip the pancake and cook the other side for an additional 1 to 2 minutes 7. Continue until batter is gone; set pancakes aside Peanut Butter Maple Glaze 1. In a small microwavable bowl, combine maple syrup and peanut butter 2. Microwave 10 to 15 seconds, until warm 3. Whisk until smooth To plate, stack pancakes and drizzle with the warm glaze; spoon berry compote on top.

Cancer Wellness

SAGE TURKEY AND SQUASH SKILLET OVER RICE Yield: 3 - 4 servings

INGREDIENTS

1 tbsp avocado oil 1 pound ground turkey 1 onion, chopped 3 cloves garlic, minced 1 delicata squash, seeds scooped out and cut into ½-inch thick slices 1/2 bunch of curly kale, stem removed and chopped 2 tbsp fresh sage, chopped 1 tsp fennel seed or ground fennel 1/4 tsp cracked pepper 1 cup white wine 2 cups chicken stock 1 1/2 tsp sea salt 3 tbsp butter Serve over short-grain brown rice, or other type of preferred grain; 1/2 to 1 cup per person Optional: crumbled goat cheese

DIRECTIONS

1. Heat 1/2 tbsp avocado oil in a pan over medium-high heat 2. Once shimmering, add ground turkey; using a wooden spoon, break up turkey until crumbled 3. Season with 1 tsp salt, 1 tsp fennel seed and cracked pepper to taste 4. Once turkey is cooked through, remove from pan and set aside 5. In the same pan over medium heat, add 1/2 tbsp avocado oil 6. Sauté onion for 3 to 4 minutes; add garlic and stir until aromatic, about 1 to 2 minutes 7. Add squash and cook for another 3 to 4 minutes, then add kale and cooked turkey; stir until combined

8. Add white wine; cook until wine is reduced by two-thirds 9. Add chicken stock and bring to a strong simmer, then reduce heat and cover pan 10. Cook for 5 minutes, then remove the cover; stir and continue to simmer until liquid is reduced 11. Turn off heat; add butter and stir until combined To plate, cook preferred grain to package directions; spoon turkey mixture on top of grain, and top with crumbled goat cheese.

TURKEY APPLE BRIE PANINI Yield: 1 serving

INGREDIENTS

1/4 pound sliced turkey 2 slices rye bread 1 – 2 tbsp jam of your choice 1/4 wheel of brie cheese, sliced thick Handful of fresh arugula 1 tbsp whole grain mustard Half an apple, sliced thin 1 tbsp butter or other type of oil

DIRECTIONS

1. Spread whole grain mustard and jam on each slice of bread, add turkey, brie, apple slices and arugula 2. Heat a pan with butter or oil over medium-high heat; place sandwich in pan and place a heavy-weighted pan on top of sandwich, pressing down — alternatively, cook sandwich in a panini press 3. Cook for about 3 to 5 minutes, each side, until bread is crispy and cheese is melted 4. Remove from heat, and slice sandwich in half

PUMPKIN PARFAIT Yield: 2 - 3 servings

INGREDIENTS

Pumpkin butter 1 15-ounce can pure pumpkin puree 1/3 cup applesauce 1 tsp pumpkin pie spice 1/4 cup maple syrup 1/2 cup coconut sugar (or brown sugar or date sugar) 1/2 tsp sea salt 1 tbsp lemon juice Toasted nuts 1/4 cup pepitas 1/2 cup pecans, crushed 1/2 tbsp melted coconut oil 1/2 tsp cinnamon Parfait base 5 – 7 ounces of yogurt Drizzle of honey Optional slices of pear, apple, figs or dates

DIRECTIONS

1. While oven is preheating to 350 degrees F, add all of the pumpkin butter ingredients to a saucepan, and set on stovetop over medium heat 2. Stir constantly until sugar has completely melted and mixture has slightly thickened, about 10 to 15 minutes 3. Take off heat and cool 4. In a small bowl, toss nuts with melted coconut oil and cinnamon until coated 5. Layer a small sheet pan with parchment paper or foil; toast nuts in oven for 8 to 10 minutes, until toasty 6. Remove and let cool Build the parfait 1. Spoon yogurt into a bowl; swirl in a few spoonfuls of the pumpkin butter 2. Top with slices of fruit, toasted nuts and honey

Cancer Wellness

Prolonging Life With a Pill A sudden diagnosis of stage IV lung cancer left Diane Hura uncertain about her future, but a drug for ALK-positive lung cancers inspired hope for a second chance. BY FRANCESCA HALIKIAS

Cancer Wellness

Photos provided by Henry Ford Health

“I

was at work in the cafeteria, and I fell,” begins another ALK-inhibitor, increasing the dose of the current Diane Hura. She was rushed to the hospital for ALK-inhibitor, or radiation and chemotherapy. dizziness, but then received a diagnosis of stage Gadgeel is aware of the fear patients may feel about IV lung cancer that had metastasized to her brain. treatment that historically only works for a couple years, She was sent for emergency surgery, where surgeons removed stopping the cancer from spreading without actually curing a golf ball-sized tumor from her brain. “I never had a headache it. “What I feel [is] the most important part as an oncologist or vision problems — nothing. I was shocked,” says Hura. is ensuring that you communicate the information to the She was only 56 years old, busy enough in her career patient in a way that they can understand,” says Gadgeel. as a public health researcher for Henry Ford Health and a “It’s about being sure that you are communicating with professional singer and flute player. And, due to the pansomebody who’s not a doctor [and] who’s not a healthcare demic, she would have to grapple with this news virtually. provider. I don’t want to give them false hope, but I really The hospital assigned her an oncologist, and they met for believe that when you’re dealing with a difficult [situation], the first time over a video call. you have to have a level of hope. Otherwise [it’s] very diffi “[I was] sitting there with my daughter and my husband cult to go to scans and take pills daily and get blood tests if and [the oncologist] said, ‘You have stage IV [lung cancer]; you don’t have an expectation that there is a chance you’re it’s incurable,’” Hura says. “All I could think of was that I was going to do well and lead a good life.” going to die. I looked at my daughter and said, ‘You’re going Hura has that fear, too. She compares life with cancer to have to take care of your dad.’” as “having a wrecking ball over my head,” never knowing Hura would eventually find out when it’s going to fall, and finding out her lung cancer was “ALK-positive.” the cancer has spread. However, she According to the American Lung also stresses her gratitude to Henry “Here I am going Association, ALK, or anaplastic lymFord and Gadgeel for providing her phoma kinase, is a gene present in with hope. “These drugs that they on my third year of embryos that helps the development of have now, these targeted therapy survival, and I just the gut and nervous system. It gets turned pills, they’re keeping me alive. Who off when the embryo is still in the womb, knew that this would ever be available want everyone else but for some individuals, it can turn back to anybody? It’s amazing because I to know that there’s on and fuse with another gene. This gene should’ve been dead six months after change, called an ALK fusion or ALK they found [the cancer]. Here I am hope out there.” rearrangement, can cause cancer. Only going on my third year of survival, about four percent of all lung cancers are and I just want everyone else to know ALK-positive. These patients tend to be that there’s hope out there,” Hura says. younger than the average lung cancer patient, with no history Hura wants every cancer warrior to advocate for of smoking. themselves; her research into her specific type of lung cancer is “I’m thinking, what’s that? I know nothing,” says Hura. “I what led her to Dr. Gadgeel, who provided her with life-saving had to focus and process what was going on fast because I’m medicine. “Knowledge is power, so you’ve got to learn what’s my own advocate, and no one was going to be an advocate going on and how to help it,” she says. “You have to be the one for me.” She learned all she could about ALK-positive lung to find the answers.” cancer and what her options were. Along the way and through many online conversations with other ALK-positive lung cancer warriors, she heard about Dr. Shirish Gadgeel, chief of hematology and oncology at Henry Ford Cancer Institute, a division of Henry Ford Health – Hura’s place of employment. “I saw Dr. Gadgeel because I had heard about him, and he specializes in the ALK gene. I went to see him, and I loved him right off the bat,” says Hura. “I was so mesmerized by him, because when I left his office, he made me feel like I was going to live forever. There was no doubt in his mind that I was going to live and be just fine.” Hura had been treated with multiple rounds of chemotherapy, radiation and surgery before Gadgeel put her on an ALK-inhibitor pill called alectinib in July 2020. “I was among the few investigators that participated in the phaseone study of alectinib,” explains Gadgeel. “This drug [also] got approved for phases two and three. To go through this journey of participating in all those trials with this drug, and now that drug is the standard of care, is very exciting.” ALK-inhibitor drugs such as alectinib will often only work for up to two years before the cancer is likely to evolve, according to the American Lung Association. After that, the ALK-inhibitor will stop working, and alternative treatments must be explored, such as prescribing Cancer Wellness

Best Tooth Forward Through her company, Side Effect Support, Jill MeyerLippert raises awareness about the importance of dental health while being treated for cancer, and offers resources to help manage short-term side effects and long-term oral health. BY CATHERINE EVES

n 1992, while Jill Meyer-Lippert, RDH, was beginning her dental career, her mother was diagnosed with breast cancer. While learning the ins and outs of a dental office as a dental assistant and receptionist, her mother was undergoing rigorous chemotherapy and suffering from treatment-related oral symptoms and side effects. Meyer-Lippert couldn’t just witness her mother’s pain and suffering — she had to do something about it. Her research into helping manage her mother’s short- and long-term oral side effects led her to found Side Effect Support in 2013, a company dedicated to helping cancer survivors manage oral health issues related to treatment for cancer. Founding a company wasn’t part of the initial plan. She just wanted to help ease her mother’s suffering, because her doctors were no help. “They basically just shrugged their shoulders and said that’s just part of your treatments. You need to deal with it, and there’s nothing you can do,” Meyer-Lippert says. 20

Cancer Wellness

What she found surprised her — what her mother by Meyer-Lippert to soothe treatment side effects and protect was experiencing was actually quite common among long-term oral health, without any irritating ingredients. people receiving chemotherapy, both during and after As a registered dental hygienist, Meyer-Lippert is their course of treatment. “Many times, people can have familiar with products that may do more harm than good. damage occur to their oral health, so sometimes they’re Her patient-focused position has also provided her with dealing with trying to repair this damage for a long time firsthand experience about the benefits of maintaining after their treatments are complete,” she says. good oral health, especially concerning cancer patients. It Meyer-Lippert believes dental health is not sufficiently all starts with good brushing habits. “For anybody that has managed by a patient’s team of doctors and nurses, and had the dental plaque buildup that occurs on your teeth, should be addressed at the time of diagnosis. “Ideally, that that is actually considered a bacteria biofilm,” she says. would be part of the treatment process,” she says, suggest“We want to keep the teeth as clean as possible, but do it ing a dental visit before treatment even begins to ensure a as gently as possible, too.” Meyer-Lippert suggests avoidpatient does not have active tooth decay or infection. ing detergents, like sodium lauryl sulfate, or anything with “That is one of the biggest things — if somebody goes in alcohol listed in the ingredient label, which can further dry with an infection inside of their mouth, and once their blood the mouth and potentially lead to mouth sores. counts weaken from the treatment process, that infection has On its website, Side Effect Support can help people find a better chance of being able to spread to other parts of the dentists who will incorporate procedures and products that body, which can be really dangerous for them,” she says. reflect their status as a cancer patient. Patients should consult As chemotherapy weakens the immune system, infecwith their oncologists about the timing and frequency of tions become harder to fight off. But this is not the only oral dental visits, because they’ll know when would be a good health concern associated with cancer treatment. During time to make an appointment, as it depends on a patient’s treatment, common chemotherapy-reblood count. “There can be times in your lated symptoms include dry mouth, mouth treatment process where the blood counts sores and a higher susceptibility to things are too low, especially the white blood cells “I kept telling like cavities, gum infections and thrush. that have to fight infection,” Meyer-Lippert These symptoms can range from says. She also notes that platelets help myself, your incredibly uncomfortable to life-threatwith blood clotting, so dental care while ening. “It can range from just a slight tensomeone has a low platelet count could be hair will grow derness of the mouth tissues all the way dangerous. “As long as your blood counts back, your to really severe ulcers that may prevent are stable, it’s good to be seen,” she says. that person from being able to eat prop Meyer-Lippert’s initial goal was to share teeth won’t.” erly,” Meyer-Lippert says. this sort of information with her mother Ignoring dental health in a patient’s during treatment, but her research taught treatment plan can also lead to stress and her that dental health was an underserved anxiety down the road. Meyer-Lippert, who became a regpart of the wider cancer community. Even before starting istered dental hygienist in 1994, refers to one of her regular Side Effect Support, she knew she had something that patients who went through treatment for breast cancer — she could be meaningful to other cancer warriors. That’s why says her patient was nervous to make a dental appointment in 2006, after losing her father to Hodgkin’s disease, she because she was afraid she had damaged her teeth during created a volunteer program at a local hospital, which distreatment. Meyer-Lippert’s patient told her: “There were so tributed goody bags for people receiving cancer treatment. many times I felt so nauseous, I did not feel like brushing my “Everybody who started treatments was able to go home teeth; I was tired. It was just the last thing I wanted to do, but I with something right away,” she says. The goody bags included kept telling myself, your hair will grow back, your teeth won’t.” information and product samples — “Something that they Mitigating the severity of these short-term side effects could start using before problems even had a chance to start.” and long-term damage is why Meyer-Lippert wants proac This corresponds with the overall mission of Side Effect tive dental assessments to be part of the cancer treatment Support. “[I] think sometimes people wait for problems to process from the very beginning. “If we know a person’s start, and then they want to make the changes, but somemedical history and we can do a dental evaluation, [we times then it’s too late,” she says. She knows the importance can] put that together with their treatment plan to anticiof prevention, and believes doctors and dental professionals pate what type of side effects they are at risk for, and then should work in harmony to reduce health risks and improve try to do some really simple things to manage the issues,” quality of life. “I want more treatment facilities to undershe says. “Sometimes it’s really easy things [and] people stand the benefit of the collaboration of care,” she says. can just change their routines at home a bit, so there Meyer-Lippert hopes Side Effect Support will only condoesn’t have to be a complex answer to it.” tinue to grow and evolve. Her sights are set on providing Side Effect Support offers extensive resources to help more educational programs for other dental professionals people in cancer treatment manage their oral health. They and raising awareness about dental care in cancer treatment, also provide information about cancer care and dental clinics, for cancer warriors and the people who treat them. and allow people to sign up for virtual dentist visits, with 24/7 Because, as she says, when you find out you have cancer, access to help answer questions about immediate concerns to oral care goes to the back of the mind — “Unless somebody help them avoid an “emergency situation,” according to Meyerreally takes the time to let you know why it would be a concern, Lippert. Side Effect Support also has an online shop specifiand [makes] sure that you’re covered with that part of your cally for people in cancer treatment, featuring products vetted health,” she says. That’s what Side Effect Support is all about. Cancer Wellness

Photos provided by BIÂN

BY FRANCESCA HALIKIAS

UNDER ONE ROOF

Robb Leone, president and co-founder of the health and lifestyle club, BIÂN, incorporates integrative healing methods to help manage his cancer while taking charge of his mental health.

Cancer Wellness

ypically, visits to the doctor usually include approach to restoring health. “We started with that sterile white rooms, uncomfortable office chairs [concept], and from there, kept growing it to say, ‘OK, and long waits, while visits to a wellness center, let’s bring a doctor of Chinese Medicine; a primary care such as a spa or health club, are best known for physician; a doctor of chiropractic [services]; a doctor of feelings of relaxation, complete with soothing Ayurveda; a doctor of mental health,” Leone says. BIÂN music and cucumber eye masks. Why are these places — also provides an on-site lab with a doctor, nurse practiboth dedicated to addressing health and wellness needs tioner and medical assistant. — so drastically contrasted in our minds? “The power of bringing all of these healers under one Robb Leone, president of BIÂN, along with his liferoof has had a significant impact on my personal health and long friends, CEO Joseph Fisher and Chairman Kevin our members’ health,” says Leone. It was through his annual Boehm, decided to explore just that. executive physical at BIÂN that Leone was found to have an “I went from a very high stress, high-octane daily life, elevated white blood cell count, which led to his diagnosis of which I think overtime took its toll,” chronic myeloid leukemia. Leone says, referencing his previous “I probably would not have career before founding BIÂN. “The gotten the extent of that blood panel stress to a certain extent, but I think done if it wasn’t for [our] concierge “The power of bringthere was [also] an inherent amount medical practice,” says Leone. “My of buildup that I put on my body doctor said, ‘Hey, I’d like you to ing all of these healers internally and externally.” Leone get some more tests,’ and I initially under one roof has had had had enough, which is why he didn’t take the time to do it, and got together with Fisher and Boehm she followed up and said, ‘Hey, I’d a significant impact on to focus on a project that would fuel really like you to do this,’ and I said, my personal health and both their bodies and their minds. ‘OK, fine, I will.’” “BIÂN was born out of what As soon as Leone received his our members’ health.” my partners and I felt was a gap in diagnosis, he sought advice and the overall hospitality experience in comfort from his friend, BIÂN CEO health and wellness,” Leone says. Fisher, who had been diagnosed with “We felt that there was nowhere that brought everything kidney cancer in July 2021. Fisher is now cancer-free and has under one roof.” Nestled in the River North neighborhood been a source of strength for Leone during his cancer journey. of Chicago, the wellness club provides a myriad of ways to After Leone met with an oncologist, who confirmed put one’s health first, be it physical or mental, with fitness the leukemia diagnosis, he began a treatment plan which studios, saunas, nap rooms, a restaurant and even a full involved taking a daily chemotherapy pill. “[The pill] is concierge medical practice within the club. very effective at doing a targeted treatment and trying to Leone’s goal is to bring together healing powers eliminate all the bad cells,” explains Leone. “But it also from the east and west to create a holistic and integrative wipes out a lot of the good cells, so the initial effects of that

Cancer Wellness

treatment were significant fatigue, headaches and tinnitus. It started to also change my platelet levels significantly.” Leone decided to incorporate holistic healing methods for his mind and body, including exercise, acupuncture and energy healing through BIÂN. “I met with a nutritionist and changed my diet; I meditated every day, I strived to exercise daily, do lots of yoga and importantly just tried to stay positive and not feel like I’m just going to be paralyzed and not live a normal life,” says Leone. “I think it took a little bit of time to kind of process [my diagnosis] and say, ‘OK, let’s beat this thing,’ and that’s kind of the attitude that I adopted.” Six weeks after his diagnosis, Leone went on a weeklong retreat in the mountains of Colorado, where he adopted a plant-based diet, hiked and meditated. And while he was concerned that he might not have enough energy or the ability to withstand the higher altitude, he found that his diet and mindfulness practices gave him a renewed sense of strength and energy. “I felt stronger,” says Leone. “I felt like [cancer] was not going to totally [make me] abandon my normal existence that I’d been living for 53 years.” Three and a half months after Leone began receiving treatment, his molecular test showed that the cancer levels in his blood had reduced to less than one percent from as high as 62 percent. He was also able to reduce his chemotherapy medication from 100 milligrams to 50 milligrams. Currently, Leone’s health goals include eventually getting off his daily chemo pill, but he knows this might not happen for a while. “Stay as positive as possible,” he advises. “I think it all starts with the overall attitude, and it can be challenging at times, for sure. I’ve certainly had many breakdowns, but I know that I’m doing everything

I can to beat it, and I don’t dwell on it. I don’t think about the cancer all the time.” By growing BIÂN, Leone also wants to help others and build a stronger sense of community. “I think people need to feel support from their community on their own personal journeys, so I’m going to continue to build the community and the members we have at BIÂN and take this concept around the nation and around the world.” Of course, the support of his family and friends and his team at BIÂN has encouraged Leone in more ways than one. “I got an encouraging note from all my trainers,” he says. “I never realized the impact of some of these notes. You do need to know that there’s a community that is thinking about you and sending their positive vibes and thoughts and prayers.” “I know lots of people are in a tougher situation, so I’m sensitive to that,” says Leone. “I just want to [give] words of encouragement to people out there that the power of having the right mindset [and] the power of taking every approach possible helped my journey.” And while things with Leone’s cancer journey are thankfully looking up, so is BIÂN’s future. Professionally, Leone hopes to continue to grow BIÂN’s community in Chicago. Eventually, he wants to take BIÂN’s concept global. “I want to advocate for the benefits of preventative health screening and how to have reactive health plans for cancer survivors, and support that community in every way possible, too,” says Leone. “I’m sure anyone that has any kind of diagnosis that’s scary like this, you’re going to have these dark moments, and it’s important not to feel alone but supported.” To learn more about BIÂN, visit www.LiveBian.com. Cancer Wellness

In Heaviness and Light Sophie’s doctors warned that her childhood cancer treatment could lead to early menopause, but every passing decade pushed this fact further from her mind. That is, until her early 30s, when she was forced to confront the reason behind a body and mind she was struggling to recognize. BY SOPHIE TSAIRIS

Cancer Wellness

Photo by Jim Menkol

hen they cut out my cancer, it left a hole in my abdomen the size of my left kidney, which had to be sacrificed along with it. Sometimes I wonder what filled that hole. I imagine an abyss of floating, swirling, sparkling matter. Sometimes at night, I lie in the fetal position, my right arm wrapped around my left side, holding myself together, keeping the sparkles from seeping out of the scar that runs across my stomach. I was diagnosed with stage IV neuroblastoma when I was seven. Surgery removed my kidney and the tumor that made a home there. Several rounds of chemotherapy, radiation and stem cell transplants later, I somehow came out the other side. Over the years, my doctors mentioned — sometimes tenderly, but often not so tenderly — that I could go through menopause early because of my cancer treatment. By the time I was old enough to understand what that meant, it had become an afterthought. I played my way through my 20s and early 30s, gallivanting around mountain ranges and eventually marrying my husband, Kale, and buying a house in Montana.

In July of 2021, while training for a trail race in the 90-degree heat of an abnormally scorching summer, I failed to make the connection between that afterthought and my body’s sudden fatigue, bouts of high anxiety, and inability to regulate temperature. I was only 32 years old. Shortly after that, my period disappeared and was replaced with hot flashes, an erratic sleep cycle and overwhelming stress. Kale and I had just started attempting to conceive; after two months with no period and a handful of negative pregnancy tests, I went to my doctor. Her initial reaction was to tell me it is normal for active women to lose their periods, and I had nothing to worry about. I asked her to do blood work anyway. The moment the phone rang a few weeks later, I knew something was wrong. My doctor was on the other end of the line; not her nurse. My doctor apologized for not taking my concerns seriously, and explained that my egg count was “undetectable,” referencing premature ovarian insufficiency (POI) — a loss of normal function of the ovaries before age 40. She didn’t say that I wouldn’t be able to have a baby, but I heard it in the words unspoken. Before hanging up, she asked if I was okay. I told her I was fine, and then I hung up the phone and melted into the ground. I called my mom. I called my husband. I called a friend who dropped everything to come over and peel me off my kitchen floor. And then I went back to work. For weeks, giggling mini-Kales roamed our house like ghosts, and I grieved. Even today, the grief comes in waves. Sitting on the couch in our living room, I watch my husband play with our dog, Zoey, and I can picture it so easily — a little boy or girl, all the best parts of Kale passed on to an equally goofy, athletic, kind, tiny human. Kale’s humility means he has no idea how lucky a child would be to have him as a dad; how well fatherhood would suit him. Kale will pull me onto his lap and talk about all the amazing things we will do with our lives together, and all I can do is sob — a mixture of loss and a little relief. Relief that I don’t have to give my entire heart, my entire life, to another human.That I won’t have to fear experiencing what my parents did when they were told their seven-year-old child had cancer.

I had to wait two months to see the reproductive endocrinologist. During that time, everything seemed to change. No matter how I wore myself out, I’d find myself wide awake at three in the morning, drenched in sweat, with feelings of creepy-crawly bugs shimmying up my legs. While I tried to process my emotions, my body acted out in a myriad of subtle and not-so subtle ways. I was like the Tin Man — my joints needed to be oiled. Symptoms piled on top of each other until the stress was unbearable; my eyelids twitched uncontrollably for weeks. A quick internet search would have told me what came next. Perhaps I should have seen it coming, but the news shocked me. When I finally saw the specialist, she told me POI is a fancy way to say I’m going through menopause early — most certainly because of my childhood cancer treatment.

“I cry when I need to cry, scream from the tops of mountains, full-belly laugh as often as I can, and try to be present for all of it.” She prescribed hormone replacement therapy (HRT) in the form of estrogen and progesterone to protect my bones and heart, and scheduled me for blood work, an internal pelvic exam and a DEXA scan. Then she sent me on my way, as though she’d just prescribed over-the-counter allergy medicine. I made it out of the office, past the lines of about-to-burst pregnant women in the waiting room, and into the parking lot before I broke down in sobs. Then the test results started coming back, and I began to crumble. With every call from a nurse, I felt a part of me disappear. My body was deteriorating. My health was slipping away from me with terrifying speed. Psychologically, it all did a number on me. I spent the next few months deep in research, learning everything I could about POI and menopause. After several months of adjusting to HRT and experimenting with lifestyle changes, I finally

started to feel like myself again. I still push my body hard, but I am also more gentle with it. I prioritize rest, eat more food and lift weights to keep my bones strong. I cry when I need to cry, scream from the tops of mountains, full-belly laugh as often as I can, and try to be present for all of it. Statistically, one in 100 women will experience POI. Most of them will never know why. At least I know my body made these sacrifices to keep me here.There are still times I erupt in inexplicable anger. It crashes out of me in every direction with no forewarning, sending the dog, cat and husband sprinting to the far corners of the house. There is power in me that I didn’t know existed; a power so strong it could split open the world. Several times I’ve put the remote control away in the freezer, forgotten the name of a best friend, and fed the obliging dog breakfast twice in one morning. Though most of what I read on the internet implies I should have lost my libido, that my bones should be crumbling and my muscles shrinking, my hunger for pleasure exceeds that of my teenage self, and I’ve never been stronger than I am right now. I tell myself, Don’t put yourself in a box. The last year has been filled with countless hours of research and biohacking my body, thousands of dollars trying to find the right doctors who will support me, and overhauling everything I thought I knew about how I exercise, sleep and process my own feelings. People close to me tactfully ask if I’m doing okay. Some don’t ask at all. I answer that I’m “fine,” “good,” even “great.” It’s not a lie, but it’s a half-truth. I’m learning that I can be overflowing with joy and life while simultaneously overcome with grief; that I can be more than one thing at one time. I wish people would stop asking me about babies. Like they are the only thing I have to give the world; the only thing this world has to give me. And though I want to curse my body for what feels like an unfair twist, it still carries me, in heaviness and light. It has given me a life of pleasure and held so much pain. It’s covered in more scars and bruises than I can count. It has never been perfect, and I’ve never asked it to be. So I will not hide it, or tell it it’s no longer beautiful or worthy of pleasure or capable of doing hard things. I will not abandon it now. Cancer Wellness

With Love and Honor

LUXXE|HONOR founder Jennifer Del Giudice’s mission is to provide access to safe and nontoxic skincare products and services to help others live a safe, peaceful and healthy life. BY FRANCESCA HALIKIAS 28

Cancer Wellness

ennifer Del Giudice has a dream to educate the When LUXXE|HONOR first opened, one of Del world about toxins in skincare products while proGiudice’s clients was a cancer warrior who had just had a viding a safe space for mindfulness practices. She mastectomy and wanted to use only clean products. And has been accomplishing just that since 2014, when she is still a member today, Del Giudice says. She’s still a she founded LUXXE|HONOR, a natural skinstressed out attorney in downtown Chicago, but when she care company coupled with wellness services located in La visits LUXXE|HONOR for a class, a facial, reiki treatment Grange, Illinois, just 16 miles from downtown Chicago. or massage, her whole mindset changes into one of peace Del Giudice is a registered nurse, aromatherapist and and relaxation, Del Giudice explains. an oncology-certified esthetician. When one of her daugh “When you’re happy, I believe [that] through meditation ters was diagnosed with an autoimmune disorder, Del and self-care, you’re going to be in the right mindset and Giudice’s research into the disease led her down a rabbit you’re going to react better to stressors. We’re always going hole of researching toxins and preservatives in U.S. prodto have stressors in our life, but it’s just how we react,” says ucts. Appalled at what she found, she knew something had Del Giudice. Another cancer warrior client of Del Giudice’s to change. uses and loves her essential oil roll-on that’s meant to uplift “Being a nurse and esthetician, I know that our skin and relax the mind, made from plants such as frankincense, is our largest organ, and whatgrapefruit and geranium. ever we’re putting on our bodies In the long run, Del Giudice is going into our inner bodies and wants to help people find the traveling into organs,” she says. “I healthiest version of themselves, “When you’re happy, I believe that [can] cause all of us to both mentally and physically, believe [that] through get so sick, mentally and physically.” while giving back to the cancer Because of this, she decided to open community. meditation and selfa location that provides healthy, “Cancer [warriors] are really care, you’re going to organic products and stress-relievspecial to me,” she says. “I would ing services. love to [create] a foundation where be in the right mindset Del Giudice’s vision of creatcancer patients and their caregivand you’re going ing an oasis for people to relax in ers can come in and receive a free a toxin- and stress-free environservice. I’d love to offer discounts to react better to ment quickly took on a life of its for those suffering, because they own. In addition to an all-natural deserve it so much. I’d love for stressors.” skincare line of her own making, them to come into a space that’s so LUXXE|HONOR offers services beautiful and calming.” such as facials, massages and reiki, Del Giudice’s outlook on as well as fitness and mindfulness classes to all. “[I want] the future of LUXXE|HONOR is bright, with a goal of people to look at this space as self-care and not a luxury; opening more locations so that more individuals will it’s all about prevention instead of reaction to stress,” Del be able to indulge in the experience of a stress-free and Giudice says. mindful environment. “I want to be known as not only a Del Giudice’s wide variety of products — from deodorhealing center, but also a skincare center, because, being ants to body oils to sprays and more — are made with an esthetician, I love skin, [and] I really think people essential oils such as frankincense, lavender and eucalypshould be taking care of their skin,” she says. “I want to tus. “I learned that there are 1,300 preservatives or toxins, continue to create beautiful blends here in the studio, according to the European Union, that are banned in [open] up healing centers [and educate people] on prodEurope [but] allowed in our American products,” explains ucts and mindfulness workshops and facials. That would Del Giudice. “It led me on this path of wanting to get out be my dream.” there nationally and educate people on not only toxins in the food and toxins in the air, but also toxins in products.” She’s also passionate about working with cancer warriors and thrivers, and because she’s oncology-certified, she makes sure that each one of her products and services are approved for cancer patients. “I did go through oncology special training to be an oncology esthetician,” says Del Giudice. “[Cancer warriors can] come in and just breathe in those oils, take some breaths, take some mindfulness classes; even learning how to breathe or to meditate would be really good for any cancer patient.” LUXXE|HONOR offers individuals an option to invest in a monthly subscription to its services to promote the habit of practicing mindfulness and relaxation on a monthly basis, according to Del Giudice. Members who purchase a subscription are offered one free massage, facial or reiki service per month and are also offered discounts on products and fitness classes. Cancer Wellness

Line by Line

Sara Machnik was diagnosed with breast cancer in the middle of the pandemic — a cancer diagnosis is isolating enough, but COVID protocols made it difficult to connect with other warriors, friends and family. But then she started writing poetry, and Sara was able to face the darkness and turn her experience into something beautiful.

efore my breast cancer diagnosis in July 2021, I was a full-time teacher. My husband and I both worked full time. I don’t have children, but I was around kids every day, and I had my own classroom. It was a busy lifestyle. No one in my immediate family has had cancer, and with breast cancer oftentimes they look at your mother or your sister or your aunt. I had no one that had been diagnosed, so cancer was not in my mind or at all in my life. I had no physical symptoms aside from finding a lump in my breast — I had never actually done breast exams before — but one night I was in bed, and I was adjusting my shirt when I felt a lump. I said to my husband, “Do you feel this? Is this just in my mind?” And he said, “That is kind of weird, maybe we should get it checked.” I called my doctor, and I had an ultrasound the next day. They told me they’d get back to me in seven days. They ended up calling me within two hours, and they told me to go get a biopsy. I think they had flagged my ultrasound, and then I got nervous. I called my mom, and she said she’d had cysts in her breast before; it’s probably not a big deal. I asked two of my friends and they’ve had lumps, which have all been benign, so I went into the biopsy thinking it’s just going to be precautionary, but a 30

Cancer Wellness

week after my biopsy, I found out it was malignant, and everything changed for me. I had stage II, grade III breast cancer. July 2022 is my first “cancerversary,” I guess as people say. It’s very strange to think about. Last year, I was thinking about what I would look like without hair and what surgeries I would need. Being on the other side of it brings up quite a few emotions for me. I did chemo from October to December 2021, and then I did 20 rounds of radiation from January to March. It was a new experience — not being able to have any support people with me. I couldn’t have my husband or my mom or my friend, but in a way, it fostered a unique and fierce independence in me that I don’t think I’ve had before. My first poem I ever wrote was during chemotherapy. I read a lot of poetry books. I’m a big fan of poetry, but I never considered writing poetry myself. But I feel like it just poured out of me in the midst of chemotherapy and losing my hair, losing a lot of friends, losing what I felt like was my whole future. I didn’t know how to deal with those emotions, and not knowing anyone in my circle that had been through cancer before — no friends and no family — and then COVID on top of that; it was extremely isolating. I started writing poetry every morning when I woke up.

Photo by Holly Honour Photography

AS TOLD TO FRANCESCA HALIKIAS

A lot of darkness came pouring out of me, so initially I hadn’t thought about sharing it because it didn’t seem positive or uplifting or inspirational; it was just very dark. But being diagnosed with cancer, what did I have to lose? The worst thing that would happen is people could say, “We hate your poetry, and you suck,” and that’s it. I was like, you know what? I don’t think I’m going to fall apart hearing that. I already have cancer. I’m bald, I feel awful, I have no self-confidence. What is the worst thing that can possibly happen? It’s a unique perspective — to be stripped away of everything you thought you had. I started posting my poetry, and it became a nice way for me to express myself without having conversations with every individual person. It was nice for my family and friends to know this is how I feel. Then it turned into a really nice way to meet other cancer survivors. I talked to quite a few cancer survivors from all around the world: New Zealand, Australia, England. It’s been so nice to have connections in that way while I was confined to my house because of COVID. Being able to meet people online was therapeutic for me. I have a separate social media account that I started, and it surprised me. I was featured in Wildfire Magazine, and I was also featured recently in Psychology Today. It surprised me that people enjoy my writing. It feels very personal to me, like my little baby, and when it gets shared, I get so excited. It’s been a very exciting process — people have appreciated my writing and enjoy it and reach out to me. I would love to continue writing. I would love to write a book; that would be my long-term goal. I would love to release my poetry as a collection. I already have ideas to show how I feel like I’ve come full circle, and found the light — the light after the darkness. I wish I had that for chemotherapy and cancer treatment. I wish I could’ve read something that was like, OK, you’re going to go through this hard time, and it’s going to feel like the darkest, longest tunnel of your life, but in the end, you’ll come out the other side. You’ll see the light and your perspective will change. Things will become so clear. I wish I would have had something to connect to and resonate with. I would love to write something that’s both the darkness and the light. Both sides of cancer, both sides of treatment, and moving on with life after.

“Eyes Open” in the beginning my mother told me it will surprise you who lights a candle in the darkness & who fades into the shadows I have never heard the applause of strangers & the silence of loved ones as deafening as this

“She Lied” my body lets me know when I’ve had too much sugar by kindly presenting bumps on the surface of my face my body sounds the alarm bells when I have too much to drink turning my belly, pounding my head and blurring my vision but my body was silent, peaceful, even tranquil when the cancer cells were invading she didn’t raise the red flag, sound the alarm bells or even let out a noise she simply slept soundly how can I trust her when she lied? To read more of Sara’s poetry, follow her on Instagram, @saralou.writes Cancer Wellness

Find Your Base, Reach Your Summit Base2Summit adventure camp provides grounding and growth for young adult cancer survivors.

or young adults who have experienced cancer, coming together to build community in an outdoor setting can be truly life-changing. Base2Summit, a weeklong adventure program facilitated by the Cassie Hines Shoes Cancer Foundation (CHSCF), provides this kind of experience each summer on Bass Lake in northern Michigan. At Base2Summit camp, a group of up to 12 young adult cancer survivors, supported by five staff members, spend a week together in the great outdoors. Each day, participants can enjoy a variety of organized activities including sailing, biking, hiking and kayaking. Back at the lake house, participants have plenty of time to socialize, share nourishing meals, connect over the campfire and simply relax. Base2Summit’s origin story traces back to 2008, when teenager Cassie Hines was diagnosed with a rare form of kidney cancer. While many people surrounded her with love and support, it was important for Cassie to “connect with others her own age with shared experiences,” according to Karen Hines, Cassie’s mother and CHSCF’s awareness director. Before Cassie passed away in 2012, 32

Cancer Wellness

she participated in outdoor programs for the young adult cancer community, including Camp Mak-A-Dream in Montana and First Descents in North Carolina. Hines explains these experiences helped Cassie push outside her comfort zone. Although she had hesitations about exploring unfamiliar places and meeting new people, Cassie returned home from these adventures with new perspectives and a close-knit community of peers who understood what she was going through. In light of Cassie’s positive response to these programs, the Hines family was inspired to make a difference for others facing cancer at a young age. According to the CHSCF website, “Cassie wanted every young adult diagnosed with cancer to be able to experience it with the same peer support and sense of adventure she did.” Cassie’s family knew it would be their job to make her dream a reality. The Hines family registered CHSCF as a 501(c)3 nonprofit after Cassie’s death in 2012. The organization started out providing treatment support gift bags to young adult cancer patients in Michigan hospitals. These gift bags include entertaining magazines, healthy recipes and information about adventure

Photos provided by Base2Summit

BY MEGHAN KONKOL

programs available to young adults in the cancer community. “We want to make sure that everyone with a young adult cancer diagnosis knows about these programs,” says Hines. Providing this information helps young adults take that first exploratory step in finding what’s available to them. CHSCF then started focusing on barriers to access in adventure programs. The organization ultimately identified an opportunity to provide financial support directly to young adults. While cancer organizations typically offer adventure programs for free, the cost of flights to program locations can present a challenge. The CHSCF Travel Scholarship program was created to cover travel expenses and ensure that an even wider community of young adults could attend adventure camps. In the summer of 2017, CHSCF started its own camp for young adults diagnosed with cancer, called Base2Summit. “We wanted to create a program without duplicating what was already out there,” Hines says. The camp started small, with only six participants, but it has grown organically since then, Hines adds. The inspiration behind the name Base2Summit is that participants are encouraged to “find their base and reach their summit,” Hines says. “We want people to start where they’re at and have a secure base. Who am I, and how do I feel?” After a base is established, participants can look toward a summit, represented by overcoming a challenge or achieving new growth. Hines adds that a person’s base will shift over time as they experience various life changes — it takes emotional agility to reframe and

look for new summits, she says, and the Base2Summit camp supports this progress for young adult survivors. “Cancer survivorship programs are not necessarily one and done,” says Hines. She explains that CHSCF recognizes that individuals often experience very different phases of survivorship, and the need for peer support among the young adult cancer community doesn’t disappear after someone has completed a camp experience. For these reasons, the organization encourages young adults at all different stages of their cancer experience to attend Base2Summit camp, even if treatment was several years in the past, or if they have attended other adventure camps. Whether attending Base2Summit or another adventure camp for young adults, Hines encourages participants to show up with an open mind about what they will experience and the connections they’ll make. Once a participant is fully present, they can truly benefit from what this camp can offer. “It might happen at different points for different people, but there is a day of magic for everyone,” she says. About CHSCF: The mission of the Cassie Hines Shoes Cancer Foundation is to support young adults with cancer from the beginning of their battle to life beyond cancer. Engaging in support groups involving peer interaction, especially young adult cancer camps, can provide them with tools that will help them manage the emotional side of their battle and allow them to feel like they are back in charge of their own life. For more information, visit CassieHinesShoesCancer.org. Cancer Wellness

Reason to Ride Young Survival Coalition’s Tour de Pink raises funds for young adult breast cancer support.

Photos provided by Ryan Stephens Photography

BY MEGHAN KONKOL

Cancer Wellness

but also serve as a community gathering, Larson oung Survival Coalition (YSC) kicks off explains. YSC Tour de Pink was the ideal soluBreast Cancer Awareness Month this tion to serve the dual purpose of helping YSC October with the YSC Tour de Pink fund its programming as well as encouraging Lisa J. Frank Memorial Ride, a two-day camaraderie around a physical and social activity. bike ride on the Jersey Shore support From the beginning, the focus was on fostering the young adult breast cancer community ing community. “YSC Tour de Pink was designed (those diagnosed under age 40). On Oct. 1, 2022, as a ride, not a race,” Larson says. The event is YSC Tour de Pink riders will choose between a open to all skill levels and features additional 62- or 100-mile route, followed by a 42-mile route extracurricular activities for participants to meet on Oct. 2, with routes starting and stopping near and get to know each other. One-hundred miles Ocean Place Resort and Spa in Long Branch, NJ. might be a breeze for some participants, accord YSC Tour de Pink has traditionally been the ing to Larson, but all riders are encouraged to organization’s largest fundraising event of the stick to their own comfort level and take advanyear, according to Jamie Larson, YSC’s director tage of breaks and social opportunities. of marketing and communications. “Every rider The fully supported ride will include mardollar from YSC Tour de Pink supports our proshals, bike mechanics, medical personnel, rest gramming,” she says. Riders include a combinastops with snacks and support, and gear vehition of survivors, family, friends and advocates cles. After each day’s ride, participants will enjoy from the breast cancer community. evening social events, dinner and plenty of relax YSC supports 14,000 young adults affected ation time on the scenic Jersey Shore. Larson by breast cancer each year. Its programs include says that Saturday night’s social gathering is support groups, social events, informational particularly special, as survivors and their loved webinars, an annual conference and educational ones have opportunities to share their stories. resources. These programs and resources are tai New this year, YSC lored to the specific needs of Tour de Pink has also young people facing a breast launched the TDP Mentor cancer diagnosis, treatment Program. In this program, and survivorship. Funds “...Many of them volunteer mentors are raised at YSC Tour de Pink experience a sense matched with first-time help the organization conYSC Tour de Pink riders tinue its mission of serving of taking back to support them as they this particular subset of the control of their body train. Mentors also serve as breast cancer community. built-in buddies for riders YSC Tour de Pink and feeling triumph during the event. Mentors started in 2004 as a “very in that moment.” help riders learn about bike small, homegrown, grasssafety, make training plans, roots event,” says Larson, fundraise and connect to beginning with only six the larger YSC Tour de Pink community. Larson riders. Nearly 20 years later, YSC Tour de Pink is says cycling can be intimidating for new riders, still intended to be a small “boutique” ride, but but this volunteer-driven program welcomes has nevertheless grown, with approximately 150 interested participants while also providing YSC riders expected for 2022. Tour de Pink veterans an opportunity to give In past years, the event expanded to include back and connect with others. rides on both east and west coasts, but it shifted The weekend culminates with a tradition to a single-location format for 2022. Larson says known as the “rider dip,” in which riders jump into that YSC Tour de Pink draws participants from the Atlantic Ocean to celebrate their accomplishall over the country, with many riders traveling ments — both in the ride itself and, for some, in their far distances to participate. cancer survivorship. “It’s one of the most meaningful In 2021, the event was renamed the YSC moments of the entire weekend,” Larson says. After Tour de Pink Lisa J. Frank Memorial Ride, in pushing themselves through a physical challenge, honor of the event’s co-founder, who died of metthese participants feel a rush of emotion getting into astatic breast cancer in December 2020. Frank the cold water. Many of them experience a sense of was one of YSC’s original members. She was taking back control of their body and feeling triumph diagnosed with breast cancer in her 30s — “Back in that moment, according to Larson. in the 90s, when there were few resources avail In addition to serving as a fundraising event, able [for this age group],” Larson says. Frank YSC Tour de Pink continues to honor co-founder and her YSC group members came together in Frank’s legacy as “Rider #1.” The YSC website 1998 to address the disparities in research and notes that Frank’s “energy, determination, and support young adults facing breast cancer. Since spirit will live on with all who ride every year.” then, YSC has served thousands of young people. Frank was an avid cyclist and wanted to Learn more about YSC at YoungSurvival.org. create an event to not only raise funds for YSC 36

Cancer Wellness

VISIT OUR WEBSITE TODAY Veterans make up a considerable number of mesothelioma cases annually. Between the 1930s and 1970s, the Navy used enormous amounts of asbestos insulation and fireproofing products on warships and submarines. Servicemen and women who did not work on these warships and submarines were not always exempt from asbestos exposure. The toxic mineral was also used as insulation in military housing. We are so grateful for the service of our veterans, and we remain committed to advocating for them and seeking justice on their behalf. If you are a veteran who has been diagnosed with an asbestos-related disease due to your military service, we encourage you to give us a call or visit our website.

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Stories of Hope

with Whitney Reynolds

Whitney Reynolds sits down with Dr. Kathleen Goss to talk stories of cancer, commitment and care.

r. Kathleen Goss joined the American Cancer Society (ACS) in 2021 as the North Central Region Vice President for Cancer Support, following more than 19 years of volunteering with ACS and ACS Cancer Action Network. Dr. Goss launched a research program in breast and colorectal cancer at the University of Cincinnati and moved it to the University of Chicago in 2007. She later joined the administration of the University of Chicago Medicine Comprehensive Cancer Center, where she most recently served as the associate director for administration. Her personal experience with cancer drives her commitment to cancer research.

REYNOLDS: WHAT IS YOUR CANCER STORY? Goss: Like most of us, unfortunately, cancer has directly impacted me and my family. When I was in college, my dad was diagnosed with an aggressive type of brain cancer, called glioblastoma multiforme. His health declined quickly after diagnosis, and he passed away only two weeks later. At only 48 years old, his loss was unexpected and devastating to me personally, and to my family. Now that I am older than he was when he passed, I am acutely aware of all he missed and the long-standing impact it has had on all of us. On a positive note, his loss motivated me to pursue a career in cancer research — not that I fully understood what that meant or where it would take me then. It has been a privilege to honor his memory and legacy while also contributing to the cancer fight in a small way. He was a brilliant scientist himself, and I think he would have been tickled — and very surprised — that I followed in his footsteps. WHAT’S A MISCONCEPTION ABOUT A CANCER DIAGNOSIS? There is a misconception by some that a cancer diagnosis is universally a death sentence. We have made tremendous advances in the way we prevent, detect and treat some cancers, improving outcomes significantly. This investment has paid off in countless lives saved. But there are other cancer types, including the type my dad had, in which progress has been much slower, and we still have a lot of work to do because of the complexity of the disease. This illustrates how important it is to keep our foot on the accelerator when it comes to cancer research. Another significant misconception is that cancer impacts every person and population equally. Everyone’s cancer

experience can be diverse, and there are extraordinary differences in the incidence and mortality of some cancers, depending on race, income or geography. Addressing these stark disparities takes a comprehensive approach and a steadfast commitment to achieving health equity. WHAT HELPED YOU MOST DURING YOUR EXPERIENCE WITH CANCER? When my dad passed away, I was fortunate enough to have extensive support from my family, friends and mentors. Channeling that support toward my education and career goals was immensely helpful. Focusing my energy on making an impact in the oncology space has been therapeutic and a way to emphasize the positive rather than the negative. WHY HAVE YOU DEDICATED YOUR CAREER TO CANCER? Progress in cancer requires all of us coming together, especially those with different backgrounds, expertise and perspectives. I’ve always been driven to contribute to that effort, fueled by my personal connection and the countless patients and families impacted every day. The cancer community is a tightknit one, linked by a common purpose and a shared commitment to make a difference. TELL US ABOUT YOUR EFFORTS IN THE FIELD OF CANCER RESEARCH I trained at Vanderbilt University and the University of Cincinnati where I gained a love for basic cancer research and cancer biology, focused on colorectal cancer. When I started my own laboratory, I decided to focus on the role of those same molecular pathways in breast cancer and how they might be targeted for breast cancer treatment. I’m proud of the work we did over the years, but running an independent academic research program can be challenging, and I ended up moving into administration to use my experience and talents in different ways. I enjoyed supporting cancer research of other investigators while broadening my breadth of knowledge in oncology. TELL US ABOUT YOUR WORK WITH ACS When I first received a research grant from ACS, I told them I would be interested in volunteering as a speaker or ambassador. That led to more than 19 years as a volunteer in many different capacities related to research, advocacy and public policy, and fundraising. I learned to appreciate the impact the organization and the dedicated staff make every day. Since the spring of 2021, I’ve been fortunate to lead a talented regional team dedicated to working with a wide range of stakeholders to improve cancer prevention, detection, access to high-quality care and survivorship. Foundational to much of this work is addressing the unequal burden of cancer felt by specific populations, including those traditionally excluded. Whitney Reynolds hosts The Whitney Reynolds Show, a nationally syndicated PBS program that brings stories of hope to your television, reminding the world: Your story matters. Cancer Wellness

Beauty by Design Alina Mehrle was busy building an empire when she was diagnosed with aggressive triple-positive breast cancer. But it was her cancer journey that would go on to inspire an entirely new pursuit — the much-loved and award-winning skincare brand AMEŌN. BY FRANCESCA HALIKIAS PHOTOGRAPHY BY RICARDO BEAS

“I

couldn’t imagine a scenario where I had cancer,” says Alina Mehrle. At just 30 years old, reveling in the nonstop hustle of start-up culture in New York City, Mehrle was diagnosed with triple-positive breast cancer. “You have no time to be sick, and you have no time to be weak.” Mehrle would have to tap into inner strength and learn how to navigate a wildly successful career running an architectural design studio, Asthetique, and cancer treatment. But Mehrle’s journey would awaken a new passion — familiar with beautifying physical spaces as an architect, Mehrle began thinking of how to translate this concept into skincare, but it wouldn’t be easy. “I’m an architect, [I’m] in construction development,” Mehrle says. “It’s really hard work, and it’s not beautiful like skincare.” Before her cancer journey would inspire future success, Mehrle was surprised to receive her diagnosis — but she wasn’t completely caught off guard. “For the six months before I was diagnosed, I already knew that something was wrong with my body,” Mehrle explains. “[My] food behavior changed completely … I ate half of a watermelon and almonds and nothing else for six months. I didn’t want to eat vegetables, meat, fish — nothing. Just watermelon and almonds.” After her diagnosis, Mehrle talked to a nutritionist and discovered that her altered eating habits were her body’s way of protecting her and letting her know something was wrong. “[The nutritionist] told me that cancer tumors need sugar to grow, and watermelon is just sugar and water. That’s the easiest way to get sugar fast. But almonds have a lot of nutrients and antioxidants, [so my body craved] something to keep me alive and something to feed the cancer,” she says. Mehrle underwent eight sessions of chemotherapy and opted for a preventative double mastectomy. The treatments were hard on her body — her nails became brittle and she lost her hair; her skin became yellow and jaundiced. “[This was] absolutely devastating for a young woman,” Mehrle says. “The world is cruel, so it’s hard to be vulnerable and weak.” But she never stopped working throughout eight sessions of chemotherapy. “I never [thought] I wouldn’t overcome this,” she says. “I always had this [state] of mind that this is just a phase; I will get through this.” Mehrle wanted to focus on what she had learned from her journey — about her strength and resoluteness to never give up hope — and ignore the bad. From this, the first seeds of a new business idea began to sprout. 40

Cancer Wellness

PHOTOGRAPHER: RICARDO BEAS STYLIST: GINA MARIE HAIR: TERRI GREEN MAKEUP: APRIL ANGUIANO VENUE: DESIGN BY ASTHETIQUE, DEVELOPED BY JUNIPER Cancer Wellness

Cancer Wellness

Asthetique, the firm she co-founded, had been “We use very interesting art,” says Mehrle. “The running successfully for several years; following cancer woman who created this art found broken pieces from treatment, Mehrle’s entrepreneurial spirit was motivated in furniture — something that you see and think it’s junk a new direction. “I never was a skincare person, and I never and nobody wants it — and she combined all these pieces did any injections or Botox,” Mehrle begins. “I always had and created this totem. [It looks] like something perfect, normal, OK-ish skin, but after chemotherapy, it became so something almost magical from a different world.” This fragile and thin, and so dehydrated and yellow.” sentiment mirrors Mehrle’s daily mantra: “Even when you Her doctor was the first to suggest cryotherapy — the use look like a broken piece and you think nothing good will of extreme cold temperatures to increase blood flow to the face, happen to you, it will,” she says. which can tighten and brighten skin while reducing blemishes. This past July, AMEŌN won the Cosmoprof North He said cryotherapy could help relieve Mehrle of some of the America Award in skincare for its Frozen Essence ice skin-related side effects of cancer treatment. And from this idea, cubes at the major B2B industry show in Las Vegas, AMEŌN was born. “[My doctor] probably inspired me a little,” Nevada. This competitive award formally recognizes the Mehrle says of her skincare brand. “He said, ‘Oh, you work too most outstanding products in skincare and is a testament much, maybe you can do something for yourself.’” to the hard work Mehrle and her team put into creating “Cryotherapy is a very ancient technique, and when something beautiful and unique. you’re doing an ice massage, the blood vessels [in your But she also wanted to help others. Because Mehrle face] constrict and then dilate, causing oxygen and nutriknows firsthand the significant physical and mental effects ents [to flow] into the skin cells,” Mehrle explains. “It helps of cancer treatment, she wanted AMEŌN to give back to ingredients penetrate deeper, and you see results faster.” those who helped and supported her through one of the Currently, AMEŌN has five skincare products, all toughest times in her life. Currently, Mehrle is working dedicated to protecting and nourishing the skin barrier. on expanding AMEŌN’s nonprofit arm, AMEŌN Cares. “AMEŌN is a very personal project for me,” says Mehrle. “It AMEŌN Cares’ latest project is its partnership with the was born from my skin recovery after chemotherapy and Breast Cancer Research Foundation. AMEŌN donates how I rejuvenated and restored it.” and raises money for life-saving breast “AMEŌN” comes from two words cancer research by creating a special with different meanings put together kind of NFT (or “nonfungible token” — to form a whole. According to Mehrle, sort of like digital art with monetary “Even when you look “ame” means “soul” in French, and “on” value). For every $100 tax-deductible like a broken piece comes from AMEŌN’s motto to “turn donation to AMEŌN Cares, individuon your skin potential.” als will receive a human “muse” NFT and you think nothing “It’s a balance between two worlds as a gift. Each AMEŌN Muse is a good will happen to that, for me, are very important,” digital representation of the soul of an Mehrle says. “It’s the world of spirituAMEŌN skincare product. you, it will.” ality and the world of modern science, “This [project] is very meaningachievement of medicine, design and ful, because each of our five products art, and the perfect middle of these two worlds. It’s the have people who inspired us to [create] that product,” says way I see happiness, harmony and the balance of life.” Mehrle. “People like nurses in the hospitals, my friends, AMEŌN’s five products took Mehrle and her team or people I saw on Instagram who were very inspirational almost two years to develop, as the formulas are built from and beautiful and gave me positive energy. I thought what scratch. “We don’t want to be just a brand for the shelves,” would be the best way to combine all of this, and we came she says. “We want to make people happy with our produp with the idea for digital humans. We have digital repucts. We want to build something for them.” resentations of physical objects. They’re all very different Mehrle didn’t just build a brand, she built an experience. and a little bit magical.” After AMEŌN launched, the company had a pop-up at New York Mehrle’s long-term goal for AMEŌN Cares is to create City’s Saks 5th Avenue in early 2022, which was wildly successa line of skincare for cancer patients undergoing treatful. Because of this, Mehrle knew the brand needed a permanent ment, as well as anyone experiencing skin issues related location, and the AMEŌN Retreat Room was created within to illness or hormone therapy — all for free distribution the Equinox fitness space at Rockefeller Center. There, customin hospitals. And while it may take time to reach this goal, ers can receive a one-hour “skincare ritual” from a professional Mehrle is confident the results will be worth it. esthetician, featuring AMEŌN products and designed to work While Mehrle’s journey was far from easy, her resilall muscles of the face to lift, firm and refresh skin. ience through treatment inspired so many positives in her “It gives you a beautiful facial and a great skincare life. “It’s hard in the beginning, but it will come to an end, experience, but it also helps you feel happy,” Mehrle says. and you will find so much happiness after,” she says. “You “[We teach] you how to breathe correctly [and] to make cannot imagine how many new opportunities and new you feel like yourself, so it’s more of a holistic experience, people [your journey] can bring, and how much better you because we really believe in the healing power of rituals.” will be as a person, inside. I think after someone experi Mehrle even drew upon her sharp architectural and ences something like this, you have more kindness and design skills with Asthetique to transform the Retreat more empathy inside yourself.” Room into something beautiful and meaningful. From the type of marble used to the art on the walls, every artisTo keep up with Alina Mehrle and AMEŌN, visit AMEŌNskin.com tic touch holds a deeper significance. and follow Alina on Instagram @alinamehrle Cancer Wellness

Cancer Wellness

Dancing Diva Abby Lee Miller of “Dance Moms” hasn’t let a cancer diagnosis stop her from living life to the fullest.

BY SARAH DIMURO

or almost a decade, dance instructor and choAcademy in the Shonda Rhimes Performing Arts Center. reographer Abby Lee Miller charmed audiShe also travels quite a bit. “Although traveling with a ences as the star of Lifetime’s Dance Moms (as 450-pound wheelchair proves to be difficult, I was just in well as several spinoff series). Her sassy and Dubai and I’ve signed on to go to South Africa in October,” larger-than-life personality was a big reason viewers tuned Miller says. in each week, excited to see Miller coaching talented And with the recent release of past seasons of “Dance young dancers hoping to make it big. But in 2018, a lifeMoms” on Hulu, an entire new generation of children and threatening diagnosis shook Miller’s world. parents are tuning in. “It’s crazy,” Miller says. “Kids that Miller started to have pain in her head and neck, weren’t even born yet are now obsessed.” which she thought was a bad sinus infection. But within Perhaps the project Miller is most excited about is the 24 hours, her jaw was numb and the pain in her neck had one she is working on with celebrity chef Bruno Serato intensified. “I was white as a ghost,” Miller says. “Sweating and his nonprofit Caterina’s Club, which provides warm profusely, hallucinating, gibberish speaking … It was a meals, affordable housing assistance and job training to very scary experience because I had no idea houseless and low-income families throughwhat was going on.” out southern California. Today, more than She went to half a dozen doctors who 5,000 children each day are receiving a free “Cancer will all dismissed her pain, assuring her it was meal at one of the 104 sites throughout Los nothing — but it wasn’t nothing. It was Angeles and Orange counties. not stop me Burkitt lymphoma. She was rushed to emer Miller was thrilled with the opportunity from living.” gency surgery, which showed that the lymto help the organization. “I’m all about kids,” phoma had severely damaged her spine. Miller says. “Anything to help children — According to Dr. Afshin Eli Gabayan, you can count on me.” She’s impressed with Medical Director of the Beverly Hills Cancer Center (who what Serato is doing, and how the team at his world-class did not treat Miller), this highly aggressive lymphoid restaurant is preparing all the meals. “I just advertise and malignancy is very rare, with only 1,200 cases diagnosed promote his mission,” Miller says. “Just five dollars will each year. Gabayan says once it is in the spine, it is at a feed a family of four. There are over a million kids who go much later stage and treatments can be quite intense. to bed hungry, and that is not acceptable. I don’t want any Following surgery, Miller underwent rigorous chemochild to go to sleep without a meal.” therapy, but it couldn’t undo the damage, and she lost the Miller’s also making every effort to take care of herself, ability to walk. and while she isn’t as concerned about her lymphoma With diligence and determination, she recurring, she knows she shouldn’t take any was able to regain some of her mobility, but chances. “My mom died of colon cancer healing is a journey, and she is currently [and] my dad of esophageal cancer [so] only able to walk 30 steps at a time I knew it ran in my DNA, but I never with the aid of her walker. Despite thought it would happen to me,” she her struggles, Miller has not lost her says. trademark spunk. “Cancer will not These days, Miller is happy stop me from living,” she says. with the life she’s created, and Eager to share her experience surrounds herself with people with others, Miller is working on who only want the best for her. a documentary chronicling her “The people in my life all support health journey, bringing attention everything that I do, but they to the doctors who quickly disforget I’m in a wheelchair and missed her pain as nothing serious. how long everything takes me to do. She is also teaching in-person dance They want me to just hurry up and classes while training dance teachers walk again already, but that is not my all over the world via Zoom. She teaches reality,” she says. Even so, Miller knows daily classes at her LA studio, the Abby Lee she’s led one incredible life — “I do count my Dance Company, and at the Debbie Allen Dance blessings every day.” 46

Cancer Wellness

A Tender Touch We hold the power to help heal in our hands. Physical touch can act as a healing modality to help people with cancer feel supported and loved while reducing stress and anxiety. BY ELYCE NEUHAUSER

id you ever get a hug from someone — a partner, a parent, your best friend — and notice the way your happiness quotient immediately increased? As you are enveloped by more than just a physical presence, your body, mind and spirit become at ease, and you feel supported, loved and connected. This is the power of touch. The skin is the largest organ of the body, and through touch, we satisfy one of our most basic and primal needs. Physical contact represents one of our deepest connections to the world and to ourselves. Human touch lowers blood pressure, heart rate and stress hormones, and it reduces anxiety by boosting positive moods and triggering the release of oxytocin, the “love hormone,” which leads to a greater sense of well-being. We can practice deeper connections by focusing on intentions and creating positive feelings and energy, even before we physically connect. It all starts with a deep breath; notice how it makes you feel. Cultivate an awareness of the way you want to touch — an intention of connection, the touch before the touch — whether it’s for another person or yourself. Now, bring your attention to the palms of your hands — you might notice a tingle, a pulsing sensation, or slight vibration. Channel your intention through your hands. Slowly come into the touch, noticing the space right before you lay your hands on yourself or another. You might even feel the reciprocal connection of a body touching your hands, not just your hands touching a body. That’s it. Enjoy the deeper connection, and explore the myriad of ways to introduce or increase touch in your life. Do not miss an opportunity to get your dose of touch when you see someone you love. A fist bump is great, a handshake is better, a touch on the shoulder is wonderful, but a hug (when you really mean it!) is golden. Besides creating a bond, an intentional hug lowers stress and boosts

the immune system; it is comforting and helps us feel safe. It aids our sleep, decreases depression, and increases energy while improving concentration. Most simply, it brightens our day. Connecting with your pet can be just as therapeutic as a massage or hug from a human. This simple exposure to our pets helps us reduce stress and anxiety, and has significant benefits on our physical and mental health. There is something very meditative about this connection; we receive as we give. To learn more, “Guardians of Being” by Eckhart Tolle offers a lighthearted and heartwarming glimpse into the unconditional and profound love between humans and our pets. Touching yourself with positive intentions is an act of self-love. Self-massage is a way to treat your body with the care it deserves. It also has greater implications on our health and wellness: What better way to get to know your body? Explore self-touch in a less clinical or judgmental way. Find a pleasantly scented lotion or oil, and start by rubbing it into your hands to warm it up. Cultivate an intention before you touch, and start slowly. Activate all of your senses — look at your body, inhale the scent of the lotion, and feel your hands on your skin. Allow your muscles to relax underneath your touch. Let your hands receive the pleasure as much as your body does. Touch is a powerful meditation — an opportunity to embrace yourself — and creates a fertile landscape for mental and emotional healing. It’s a practice of union, a coming together and a recognition of the way we hold and let go. We hold a unique potential for healing right in our own hands, which is especially meaningful during an experience with cancer. It’s helpful, if not imperative, to make touch a daily practice and part of your self-care routine — use it in your self-exams, while allowing it to deepen feelings of self-love. Who doesn’t want more of that?

Cancer Wellness

JOIN THE MESOTHELIOMA SUPPORT GROUP We understand that a mesothelioma or lung cancer diagnosis is often life changing, and can usher in a series of questions. Our Mesothelioma Support Group is a safe space for you and your loved ones to get the answers you need and the support you deserve. Moderated by our certiﬁed mesothelioma cancer coach, Mirela Kopier, we invite you to join a network of over 200 people whose lives have been affected by mesothelioma. Visit MesoSupport.org to join today.

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Moderated by certifed cancer coach, Mirela Kopier.

Baseball and Basal Cells

Johnny Bench of the Cincinnati Reds is on the ball when it comes to skin cancer. Cancer Wellness talks with Bench about his skin cancer diagnosis and how “an ounce of prevention is worth a pound of cure.” BY FRANCESCA HALIKIAS

uring his 17-year career with the Cincinnati Reds baseball team, catcher Johnny Bench led Cincinnati to two World Series titles and four National League championships. In 1989, Bench was inducted into the Baseball Hall of Fame in Cooperstown, New York. His illustrious career sparkled with accolades, earning titles like Most Valuable Player (MVP), World Series MVP and Rookie of the Year, along with 10 Golden Gloves. While Bench celebrates his accomplishments, he’s proud to add another to his extensive list: being cancer-free. Bench was diagnosed with a non-melanoma skin cancer called basal cell carcinoma (BCC) in 2012, most likely caused by prolonged UV exposure from many years playing baseball in the blazing sun. According to the Skin Cancer Foundation, BCC is the most common form of skin cancer and the most frequently occurring form of all cancers, with an estimated 3.6 million cases diagnosed each year in the U.S. alone. BCCs form from the abnormal and uncontrolled growth of basal cells, and though it’s usually curable, the cancer progresses the longer it is left untreated. “I was always exposed to the sun,” Bench says. “My days were spent at the ballpark [and] when I wasn’t working, I was constantly in the sun. I never experienced any problems until toward the end of my career, [when] I started developing some blisters on my eyelids. I thought [they] were fine, [until] my optometrist said, ‘You really need to have these checked.’” He went to see his dermatologist, who performed a biopsy and confirmed the blisters were BCCs, and would need to be surgically removed. After surgery, Bench was free of cancer, but a decade later his dermatologist in Cincinnati spotted another BCC on his skin. “He removed it [and] got everything,” says Bench. Now, he has partnered with the Let’s Get Real About Skin Cancer program, which spreads awareness about advanced non-melanoma skin cancers and how to protect yourself from them. From applying sunscreen every two hours to wearing big hats and sunglasses whenever outside, Bench makes sure his skin is always protected. “Most skin cancers [are ones] you can recover from,” explains Bench. “Melanoma is what you don’t want to hear, but with basal cell carcinoma, most of [those cases] are

going to be rectified — they’re going to be taken care of and they’re going to be cured.” Bench gets his skin checked up to four times a year by dermatologists in Cincinnati and Florida, where he now resides, but he also keeps an eye out for suspicious growths on his friends’ and loved ones’ skin, too. After noticing something on the side of his friend’s face, Bench took him to his dermatologist, who cut it out right away. “He had one almost the size of a gummy,” says Bench. “The other day when I was in town with him, he said, ‘You saved my life.’ And it may be true, because he had to basically have plastic surgery because they had to cut so deep. That’s the scary thing when you go so long, and you don’t get examined, and now the roots are reaching in [and] may go to other parts of the body. That’s the last thing we want. We want protection [and] prevention.” Bench also tries to instill these practices in his young sons so they can protect themselves from skin cancer at an early age. He makes sure to inform them about sun protection and asks them to try to take care of other people, too. “We have to show passion for protecting others and [be] aware of the fact that this can happen to anybody,” he says. It only takes a moment to check on loved ones’ skin, but that moment can save them from a host of problems down the road. Bench notes that self-analysis can only go so far, as it can be difficult to adequately screen the back of your body. He took his son to his pediatrician, to check the moles on his son’s back. “Even at 12 years old, they’re starting to be aware of the fact that if these moles change, we can do something now before anything gets out of the possibility of being taken care of,” says Bench. Even if an individual is diagnosed with BCC and has surgery to remove the cancer, Bench always advocates for doctors and dermatologists to double-check if all of it has been removed. “When I had my eyelids done, [my dermatologist] went in [and] cut, went into the other room, [looked at it] under the microscope [and said], ‘I have to cut some more.’ If you don’t get down to the bottom of it, you haven’t accomplished anything, ‘he says.’ Ten years after Bench’s first experience with a BCC, he remains proactive about his skin and urges others to do the same. “Use your sunscreen [and] try to avoid the middle part of the day,” he says. “If you’re playing golf, fishing, if you’re even just out walking — I don’t think people understand that [even] a walk, it only takes 20, 30, 40 minutes and all of a sudden you’re exposed pretty well.” Even during the winter months, sunscreen with an SPF of at least 30 should be worn on exposed skin, every day. Hats and sunglasses are the easiest way to help cover exposed skin, but long sleeves and pants are the only way to ensure total-body sun protection. “You need to wear your protection,” Bench says. “No matter if it looks strange with that big hat on and the sunglasses, you’re taking care of yourself, and we all want everyone to live long and healthy lives.” Because Bench knows the benefit of stopping the problem before it starts. “An ounce of prevention is worth a pound of cure,” he says. “I’ve heard that since I was a little kid, and isn’t that the truth.” Cancer Wellness

WONDER DRUG? A recent clinical trial using an immunotherapeutic “checkpoint inhibitor” completely eradicated colorectal cancer in all 18 participants. BY CATHERINE EVES

Cancer Wellness

t is virtually unheard of — the stuff of science fiction There are multiple types of immunotherapy to or daydreams — but a recent clinical trial has eradtreat cancer. Most work harmoniously with the immune icated cancer in every trial participant, causing the system, which results in less negative side effects than patients’ cancer to go into complete remission. those related to chemotherapy, which kills both healthy The trial was small, just 18 colorectal cancer and cancerous cells without distinction. Dostarlimab is a patients, but that doesn’t make the results less astonishtype of immunotherapy known as a “checkpoint inhibitor.” ing. All 18 patients were given the immunotherapy drug These immunotherapy drugs work by “unmasking” cancer dostarlimab, and all 18 left the hospital on their last day of cells to allow the immune system to target and kill these treatment cancer-free. cells, specifically. According to Dr. Omkar Marathe, Medical Director Trials with other types of checkpoint inhibitors have of Clinical Trials at the Oncology Institute in Long Beach, proved promising, but the dostarlimab trial was special, California, dostarlimab was first approved by the U.S. as treatment began on patients before their cancer had a Food and Drug Administration as a treatment option for chance to spread. But this is also why the trial was a little patients with a specific subtype of advanced endometrial risky, and initially difficult to secure funding, according cancer — a mismatch repair protein deficiency. to Dr. Luis A. Diaz Jr., one of the authors of the study, in That’s why colorectal cancer was the focus of the a June 2022 article in the New York Times. Researchers recent study. According to Marathe, colorectal cancer proposed to alter colorectal cancer’s standard of care, is the cancer that has the largest percentage of patients bypassing chemotherapy and radiation, which meant parwith this gene mutation (the mismatch repair deficiency), ticipants would potentially allow the cancer to grow and making up around 5% to 10% of colorectal cancer patients. spread. “Those patients are the ones that we know benefit from Al Hallak says his initial focus is to shrink a patient’s immunotherapy such as dosatarlimab,” Marathe says. tumor, so those who receive surgery are less at risk of dam According to the National aging the digestive tract. “Our Cancer Institute, there are job in the clinical practice is currently 19 clinical trials to try to shrink that rectal using dostarlimab for a wide cancer as much as possible “With this new trial ... those variety of cancers — primarso the surgeon, when they ily breast and endometrial go in to remove it, is able to lucky patients did not have to cancers, but also cancers of … keep everything connected, do any chemo, did not have the liver, lungs and others. It’s and not need to do a colosclear doctors and researchtomy,” Al Hallak says. “With to do any radiation, did not ers believe this drug holds this new trial … those lucky have to get the surgery [and] promise for cancers that might patients did not have to do otherwise be unresponsive to any chemo, did not have to do they are now monitoring standard treatment plans due any radiation, did not have to them to make sure none of to this specific gene mutation. get the surgery [and] they are But that’s not the only now monitoring them to make the cancer has come back.” reason the study focused on sure none of the cancer comes colorectal cancer. According back.” to Dr. Mohammed Al Hallak Trial participants will from Detroit’s Karmanos Cancer Institute, colorectal need to be monitored for the next three to five years to cancer has an outsized impact on a patient’s quality of life. ensure their “cure” holds, according to Al Hallak. It’s also “It is because of the negative impact of the radiation in this important to note this trial focused on patients with a rare area,” he says, noting that radiation affects the bladder genetic signature in their tumors, and additional trials and bowels. Some patients receive surgery to remove the involving larger numbers of patients will need to be comtumor entirely, which can result in a permanent colostomy. pleted to better understand potential side effects and long“[This] impacts the patients quality of life significantly,” Al term efficacy of dostarlimab. However, these recent posiHallak says. “Doing this treatment … makes a lot of sense tive results are almost certain to ensure further studies because of the very large impact.” into this drug and others like it — for cancers across the The 18 patients entered the trial without expecting spectrum. “The more we treat, the more we see results, we miracles. The study’s doctors published an editorial in can actually bring it for FDA approval so we can use it as the New England Journal of Medicine in June 2022, citing treatment in practice outside of clinical trial,” Al Hallak that routine treatment of colorectal cancer includes chesays. motherapy, radiation, and surgery — this is the colorectal “standard of care,” which results in a three-year disease-free survival rate of 77%. However, these treatment options can also result in long-term side effects, including infertility and sexual dysfunction, among others. However, no patient treated with dostarlimab has experienced these outcomes as a result of the drug to date.

Cancer Wellness

The Answer to Cancer is Research. The Israel Cancer Research Fund (ICRF) supports the best and brightest scientists conducting groundbreaking cancer research in Israel for the benefit of all humanity.

Osnat Ashur-Fabian, PhD Meir Medical Center ICRF Project Grant Recipient Project Focus: Overcoming Drug Resistance in Ovarian Carcinoma

Yael Mardor, PhD Chaim Sheba Medical Center ICRF Acceleration Grant Recipient Project Focus: Targeting Breast Cancer Metastasis to the Brain

Albert Grinshpun, MD, MSc Hebrew University - Hadassah Medical Center ICRF-Conquer Cancer (The ASCO Foundation) Career Development Award Recipient Project Focus: Developing a Minimally Invasive Breast Cancer Biopsy

Over

2,700

$87 M

grants FUNDED to date

in funding awarded

83 research projects in 2022-2023

VISIT ICRFONLINE.ORG TO LEARN MORE Cancer Wellness

To Work or Not to Work

Work may be the last thing on your mind in the midst of a cancer diagnosis, but familiarizing yourself with workplace policies will give you time to focus on your health — in and out of the office.

BY JOANNA MORALES, ESQ.

hen newly diagnosed with cancer, your first thoughts won’t be related to work, wondering how to navigate your career while going through treatment. But, at some point, you will have to figure out just that. You will have to learn how to balance your job with treatment, and whatever side effects that result. You will have to figure out when and how to get back to work, if you’ve taken time off. And you will have to figure out how to maintain your income, because the bills won’t stop. You might be unfamiliar with the laws and programs in place to protect you and provide you with tools to help you continue to work following your diagnosis. Federal, state and local laws, employer policies and benefits, and access to insurance coverage are like pieces of a puzzle. Your puzzle probably won’t look like anyone else’s, and will depend on where you live and your type of job, among other factors. These puzzle pieces can be accessed separately, but hopefully they will fit together to help, not hinder, your recovery. WHAT LAWS CAN HELP ME WORK THROUGH TREATMENT OR RETURN TO WORK? The federal Americans with Disabilities Act (ADA) provides eligible employees with protection against discrimination in the workplace based on their medical condition. Most states have laws similar to the ADA, but some are more protective. For example, state law may cover smaller employers than the ADA. For information about the laws in your state, visit TriageCancer.org/StateLaws. One of the most useful tools the ADA provides is access to reasonable accommodations. Reasonable accommodations are changes at work that help you continue to do your job, take time off or return to work. Some examples of reasonable accommodations for employees with cancer include: • Modifying work schedules (such as flexible working hours, more breaks, telecommuting options or extended leave) • Modifying work spaces (such as the ability to switch offices and providing access to a closer parking spot) • Updating technology (such as providing things like headphones and speech-to-text software) • Changes in workplace policy (such as the ability to wear a hat or scarf) • Shifting non-essential job duties to other employees • Moving to an open position, if available Caregivers aren’t legally entitled to reasonable accommodations, but if you are caring for someone with cancer and it affects your ability to work, it doesn’t hurt to ask. Many employers want to keep valued employees, and providing reasonable accommodations is a big help. For more information about reasonable accommodations, visit TriageCancer.org/Employment.

WHAT IF I NEED TO TAKE TIME OFF FOR TREATMENT? The Family & Medical Leave Act (FMLA) is a federal law that allows employees to take time off from work because of their own serious medical condition; or to care for a spouse, a parent or child. While taking leave, your job and your employer-sponsored health insurance coverage are protected. This means, generally, you cannot be let go because you are taking time off under FMLA. This is where the puzzle pieces start to fit together. Many people will try and use paid time off they’ve accrued — such as sick or vacation time — without designating it as FMLA leave. However, it is in your best interest to use those benefits concurrently. The paid time off is what will allow you to keep receiving a paycheck, and the FMLA is what provides job and insurance protection. Leave time under FMLA can be taken as a 12-week block of time or broken up — for instance, you could take every Wednesday off to visit the doctor. It’s important to remember, the law provides only a minimum of what employers must provide eligible employees. Many employers offer benefits above and beyond what the law requires. So, it can be helpful to check what your employer offers. For more information about cancer and work, visit TriageCancer.org/Employment. HOW CAN I MAINTAIN SOME INCOME IF I AM NOT WORKING? If you do not have any paid time off, or you need to take more than 12 weeks off, you may be able to maintain a portion of your income through disability insurance policies. Disability insurance can be purchased from an insurance company, or can be offered through employers, through state disability insurance programs, or through one of two federal long-term disability programs. For more information about disability insurance, visit TriageCancer.org/Disability-Insurance. AM I ABLE TO KEEP MY DIAGNOSIS PRIVATE? Sharing information about your medical condition is a personal decision. However, you may be required to provide some information to your employer to show why you qualify for a reasonable accommodation or medical leave. But, if you do not want to share a cancer diagnosis with your employer, you can ask your healthcare team to focus on the side effects from treatment, such as fatigue or neuropathy. For more information about disclosure decisions at work, visit TriageCancer.org/QuickGuide-Disclosure. WHAT ELSE SHOULD I BE THINKING ABOUT? If you have health insurance coverage through an employer, it is useful to understand your rights to keep your employer-sponsored health insurance if you are taking time off, and what your health insurance options are if you lose or leave your job. For more information about health insurance and other cancer-related legal and practical issues, visit TriageCancer.org/Free-Cancer-Resources-By-Topic. Cancer Wellness

DO W

IN D

ERS

Communities downwind of nuclear testing sites bear the brunt of negative health outcomes from radiation exposure. BY MAURA KELLER

or decades during the Cold War, the U.S. and Soviet Union’s focus on nuclear technology intensified, and the threat of nuclear exposure was a constant source of fear and anxiety. But as the Cold War ended during the early 1990s, attention shifted to the impact of nuclear fallout and radiation exposure, made worse by the news of Chernobyl and other nuclear disasters in communities adjacent to nuclear power plants. Today, this fear is channeled into the potential impact of naturally occurring radioactive materials in our homes, in the air we breathe, and even those we are exposed to during medical procedures. But what role does radiation and nuclear exposure play in daily life, and what impact can it have on our health and well-being? According to Dr. Rahul Bhandari at Tampa Bay Radiation Oncology, the medical community is progressively learning more about the types of radiation exposure, and what amounts can lead to future health detriments, such as cancer. 54

Cancer Wellness

Interestingly enough, there is no one type of cancer more prevalent than another caused by radiation exposure. Other health risks include thyroid issues and acute radiation syndrome, among others. Children of people exposed to significant amounts of radiation are more prone to develop cancer as adults, and fetuses are at risk of birth defects if exposed to radiation in the womb. “Unfortunate mega-scale, radiation-related occurrences from the past, such as the two nuclear bomb events in Japan decades ago and nuclear power plant explosions similar to the one linked to Chernobyl, have been providing scientists with a wealth of radiation-related information,” Bhandari says. “From day zero of each event to this very day, radiation experts have been tracking the effect of radiation’s exposure to the surrounding land, air, water, soil, animals, plants and food.” As Bhandari explains, the same can be said about the aftermath of nuclear tests and what that radiation exposure can cause in the present day. “Most importantly, we are discovering valuable information on the acute and chronic consequences of radiation exposure to the individuals exposed, and even their offspring,” Bhandari says. According to the CDC, more than 500 nuclear weapons tests were conducted in the U.S. and globally, all before 1963. “Depending on the size and type of weapon that was exploded, some of these particles and gases traveled great distances before falling to earth where people could be exposed to radiation,” the CDC website states. Continuing research has paved the way to better understand the cause and effect relationship between radiation dose and its effects, which then translates to how healthcare professionals dictate protective measures and treatments for any future exposure. TYPES OF STUDIES Compared to studies that focus on radiation from environmental, medical and occupational sources, studies on nuclear testing and its radiation fallout have provided relatively little information on dose-response outcomes, given the inherent difficulty of accurately collecting data on these populations. Jagdish Khubchandani, professor of public health at New Mexico State University, says cancer research is still dominated by developed countries, including research pertaining to nuclear and radiation exposure. “Most of Africa and Asia still depend on other countries for research and fact-finding related to cancer,” Khubchandani says. “Even if there are studies in these regions, there is often funding or major involvement of scientists from developing countries.” Khubchandani notes researchers out of northern Africa claim “devastating” health effects, but these researchers don’t have the capacity or resources to show empirical evidence. He also notes the need for decontamination across the continent, due to nuclear waste and spills from past decades. Nuclear testing fallout has continued to be the subject of thorough study since they first started taking place. “With all the research conducted over the last several decades on radiation exposure, scientists have been able to develop statistical models on the radiation dose-response relationship, which can then also be utilized to calculate one’s lifetime radiation-related risk across different scenarios,” Khubchandani says. So, although correlations of consequences are difficult to directly associate with nuclear tests, well-studied and established models can be used to predict an individual’s risk,

depending on specific factors. One of the most significant is proximity of a person’s home or workplace to a nuclear testing site. However, if a person doesn’t live in close proximity to a site, they are still at risk of exposure through their food and drink, as it could have been grown or collected in an affected area. AREAS OF CONCERN The desert belt, which includes parts of Arizona, California, Utah and northwestern Mexico, has seen a lot of nuclear testing over the years. The first nuclear test in the U.S. was at the Nevada Test Site, 65 miles north of Las Vegas, on Jan. 27, 1951. How has radiation exposure affected desert belt populations? Bhandari says this continues to be studied, and we are continuing to learn even more information with every subsequent year since these tests were first conducted. This is because the time passed since each exposure itself gives scientists more insight on what the chronic, or longterm, effects of radiation exposure can look like. “We do know that since the above-ground nuclear tests were stopped several decades ago, radiation in air readings today is well-below risk and regulatory limits, and it has been continuing to fall with time,” Bhandari says. “However, we are better identifying dose exposure’s relationship to certain health detriments, such as thyroid issues; and of course, different types of cancers, such as leukemias.” Even though it is difficult to pinpoint exact causeeffect data points to nuclear fallout occurrences near nuclear testing sites, cancer experts are able to better assess risk to individuals when accounting for variables such as proximity to nuclear testing, or the types of radionuclides involved. PROTECTIVE MEASURES As with any known cancer-causing element, it is important to take a proactive approach and stay informed about any risks in or around your area. There are local and national government agencies dedicated to researching radiation exposure and setting radiation protection standards to best protect the general population. These radiation safety agencies and personnel take radiation exposure extremely seriously, according to Bhandari, especially as these agencies are more in tune with its hazards. “Over the last several decades and ever apparent today, there have been numerous institutional, local and national organizations put into place to strictly regulate the use of any type of radiation, monitor radiation use and limit its exposure to the public,” Bhandari says. These agencies have strict protocol and quality assurances in place to thwart known incidences of radiation exposure, which were unintentionally ignored in the past. For example, the U.S. Environmental Protection Agency (EPA) utilizes a system of radiation monitors, called RadNet, to assess background radiation levels in areas across the country. The EPA’s website provides information to help individual’s stay well-educated and prepared in the case of any radiation-related events. “Another route is to reach out to your personal family physicians about any concerns you may have,” Bhandari says. “They will be able to guide or refer you to a professional who will be more qualified to help with any personal concerns.” Despite all this, according to Bhandari, research continues, and we are heading in the right direction to one day be able to better prevent or prepare for future exposures. Cancer Wellness

THE CURE

IS OUT THERE CURE Childhood Cancer’s advancements in research and funding provide hope that one day all children will live cancer-free. BY FRANCESCA HALIKIAS

Cancer Wellness

t’s every parent’s worst nightmare; hearing the words, use drugs to understand how those gene changes promote “Your child has cancer.” But for CURE Childhood tumor growth.” He hopes this research will be critical in Cancer CEO Kristin Connor, that nightmare became developing therapies that target aggressive medulloblasa reality in October 2001, when her youngest son was toma in patients. diagnosed with neuroblastoma at only one month old. Without the generosity of foundations like CURE, Thankfully, Connor’s son has been cancer-free since Castellino’s advancements in childhood cancer research November 2003, but the experience propelled her to seek would not be possible. “[CURE] has allowed me to fund my answers about the scope of pediatric cancer in the U.S., research and do what I love, which is to understand the way and what she could do to help. “Seeing what other chiltumors develop and to use models that we generate in the dren were going through [and] making friends with other lab to develop new ways of treating children,” he says. moms; watching children go through bone marrow trans CURE’s investment in cancer research over the last plants and then, unfortunately, having friends whose chil16 years totals more than $38 million, with more than dren didn’t make it — that was life-changing for me,” says $10 million going toward two specific organizations — Connor. the Precision Medicine Program at the Aflac Cancer CURE Childhood Cancer is an Atlanta-based orgaand Blood Disorders Center at Children’s Healthcare of nization dedicated to providing research funding and Atlanta and to the Target Pediatric AML Project. support for childhood cancer patients and their families. Advancing precision medicine, or gene-based therapy, According to CURE, more than 17,000 children in the is one of CURE’s biggest priorities. Often in childhood U.S. are diagnosed with cancer every year. In the last 25 cancer, treatment avenues don’t reflect the genetic differyears, only six drugs have been developed and approved ences of each child. Children with the same type of cancer specifically for children, and cancer is the leading cause of may respond differently to the same treatment because of death by disease in children. these genetic differences. With precision medicine, chil Connor doesn’t think it has dren whose cancers don’t respond to be this way. “When we got to to standard treatments or those who the other side and my son was have high-risk tumors can undergo cancer-free, I started researching, genetic testing on the cancerous “I think being able what are we doing as a nation about tissue, allowing individualized this problem of pediatric cancer?” treatments to be created to target to see that progress says Connor. “If it’s the leading and destroy the mutated cells. makes me feel [at] cause of death by disease, what are “When my son was diagnosed, we doing as a nation?” [precision medicine] wasn’t a thing,” peace. [It] would be too As reported by the National Connor begins. “[There] was no much if I couldn’t see Pediatric Cancer Foundation, only sequencing of tumors, there was no four percent of the money the govunderstanding of genetic mutations that every year we are ernment spends on cancer research and targeting them … I think being moving the needle and goes toward treating childhood able to see that progress makes me cancer. “I was shocked by that,” feel [at] peace.” While progress is making things better.” says Connor. “I expected it to be slow, Connor and other parents of different, and when I learned [that childhood cancer survivors find statistic], I just couldn’t let it go. I comfort in every advancement. “I needed to do what I could.” think [it] would be too much if I couldn’t see that every The need to help other patients and families expeyear we are moving the needle and making things better,” riencing childhood cancer is what led Connor to join she says. CURE in 2006. She was only the third person to be a CURE also offers resources to families of children part of the organization, and they had a relatively small with cancer. Their website includes resources about what budget — only about $800,000. CURE’s current budget is to bring to the hospital, advice for the newly diagnosed, $9.2 million, and the organization just gave $4.7 million financial assistance, meal programs, counseling and more. toward research grants to doctors and researchers paving “CURE [has] been extremely generous to the researchthe way in childhood cancer research. ers, [and] they do a lot for families,” says Castellino. “They Dr. Robert Craig Castellino, a pediatric hematologist/ support a lot of other endeavors that are specifically taroncologist and associate professor of pediatrics at Emory geted toward patients. They sometimes come around on University School of Medicine, has received over $1.2 weekends or weeknights and feed all the families on the million in funding from CURE since 2008. His focus is on floor [of the hospital]. They’re an important organization improving treatment methods for medulloblastoma, the and invaluable to the children and families in Atlanta.” most common type of malignant brain tumor in children. Connor hopes that CURE will continue making a Castellino and his team have identified at least four difference in the lives of children and families dealing subtypes of medulloblastoma through research funded with cancer, despite the many challenges that come with by these grants, with special focus on the most aggresthe emotional aspects of childhood cancer. “I hate to see sive subtype. “My focus, as well as a lot of other people in people have to face [those challenges], but I do need to this field, is to try and develop better treatments for this know that we are making a difference, otherwise it would subtype of medulloblastoma,” Castellino says. “I’m particjust be hard with no hope,” says Connor. “And there’s so ularly focusing on two specific gene changes and trying to much hope.” Cancer Wellness

Healing from Home Jeeva Informatics is widening access to adult and pediatric clinical trials through the screen.

BY FRANCESCA HALIKIAS

n the aftermath of the pandemic, many businesses and organizations find themselves incorporating a virtual aspect into almost everything they offer. Working from home is considered normal, and video/audio platforms like Zoom offer a contact-free option for in-person activities — from at-home fitness classes to therapy from your couch. Telehealth has also become prominent, and patients are now able to have face-to-face conversations with their doctors without leaving home. According to Mayo Clinic, telehealth is the use of digital information and communication technologies for managing and accessing healthcare resources. Dr. Harsha Rajasimha, founder and CEO of Jeeva Informatics, wants to further expand the incredibly wide scope of telehealth to include adult and pediatric clinical trials for cancer treatment. Rajasimha is on a mission to decentralize clinical trials, with a heavy focus on pediatric clinical trials. He says that most patients never have the opportunity to participate in a clinical trial that could potentially save their life, due to barriers like location, financial accessibility and time management. “The goal for Jeeva is to make clinical trials more accessible, easier and faster for patients living anywhere in the U.S. or globally,” says Rajasimha. “Historically, the majority of clinical trials have been restricted to a 50-mile radius of [bigger] cities, and the majority of patients accessing healthcare [are] in rural areas and in hard to reach [locations]. The rest of the world has very few opportunities to even hear about a clinical trial, let alone have the opportunity to participate and enroll in [them].” In-person pediatric trials also pose challenges for parents and legal guardians of the children, who would have to take off work to bring their child to and from hospitals while still being able to provide for their families financially. “It’s a lot of effort and burden having to travel,” Rajasimha says. “Many times, the patient and family can afford more if they have to travel three times a year [as opposed to] 10 times a year. It becomes suddenly affordable. Telehealth can be a lifesaver in that sense.” Online options for pediatric clinical trials also offer continuous record keeping and reporting over the course of the trial. Clinical trials can take years to complete, during which time growing children undergo physiological changes that affect their reaction to the treatment being tested. With telehealth, patients and doctors will be able to record information and see the patients more often. Visits may also be able to occur more frequently than in-person visits, with quick audio/video check-ins monthly to review patient-reported outcomes of symptoms and quality of life. 58

Cancer Wellness

Doctors can also see more patients with telehealth. “You are able to efficiently go from one patient to another [remotely, instead of] running around in the clinic where the patient has to be taken through the usual steps of measuring vitals and getting all of that data collected, being seated in a room and then the physician coming,” Rajasimha says. When it comes to cancer and clinical trials, there are many in-person follow-up appointments and long-term monitoring. Many patients choose to drop out because the financial and geographical burden of remaining in that study is so high, and the trial doesn’t seem worth it to them anymore. “Cancer is an unknown,” says Rajasimha, “To spend so much money, depend on another caregiver to take on the travel burden … they would rather not do it.” If the follow-up appointments can be done conveniently from the comfort of the patient’s home, more patients may be chosen to complete these clinical trials. While telehealth will never replace in-person doctor and hospital visits, it gives immunocompromised patients a way to avoid being exposed to illnesses, as well as not requiring them to travel as much. It also allows them to take care of administrative tasks, like reviewing documents that can be explained on a video call, thus saving time and money. Jeeva Informatics also provides all the necessary tools on one database. “It takes a platform approach and not a piecemeal approach,” explains Rajasimha. “[Previously,] you’d have a tool for video visits, you’d have another tool for electronic signatures, [another] for SMS, email — it’s just too many systems to juggle between for the research side or the clinical side.” Over the last three and a half years, Rajasimha and his team developed the Jeeva e-clinical platform, which helps biopharmaceutical companies, academic medical centers, and sites have a single login from any browser-faced device to conduct clinical research. “We don’t have to juggle between multiple tubes. That’s the revolution that’s unfolding,” he says. Rajasimha’s goals for Jeeva Informatics also include making it more diverse and accessible to all. “It’s worth noting that 80 percent or more participants [in clinical trials] are caucasian and male,” he says. With Jeeva’s telehealth platform built to include features such as language support, calendar assistance and scheduling help, the hope is that it will be more inclusive for patients of all races, genders and backgrounds. For more information on Jeeva Informatics, visit JeevaTrials.com.

What C omes Next

A bike accident helped cW’s resident cancer coach wake up to the power of positive thinking.

Photo by Sarah Bell

BY MIRELA KOPIER

reatment is over (hopefully forever) and you have finally gotten an all-clear, NED, ringing of the bell. Boy, what a relief! But what can you do now to make sure it is all behind you? What can you do to live the most healthy and fulfilling life after treatment? I would like to share a few ideas for a holistic path to take once treatment is behind you. Thoughts alone are incredibly powerful, so let’s start there. At age 16, Einstein imagined chasing a beam of light, and that thought experiment played a memorable role in his development of special relativity. According to Dr. Joe Dispenza, a world renowned teacher, researcher and writer of all things neuro, humans are in a constant state of panic and stress that causes an imbalance in the brain, potentially resulting in physical disease. Unfortunately, we are still hardwired like our prehistoric selves to maintain a state of “fight or flight” so we don’t get eaten by something larger than us. We have to consciously work on entering the state of “rest and digest” offered by our parasympathetic system. I’m sure you’ve heard stories of people who have healed themselves from disease and trauma by just believing they are well. I know that can seem a bit outlandish, but think about the significant number of modalities out there that support this theory. According to the formal definition, meditation is written or spoken discourse expressing thoughts on a subject. Therefore, we should have more happy, calm and peaceful thoughts to be happier, calmer and more peaceful. Meditation has become so mainstream in the last 20 years that even doctors encourage people to take the time to meditate while going through cancer treatment. We have access to a wealth of apps, books and podcasts on the subject, and I advise you to seek these out. Maybe there is something to this mind-body connection after all.

I can tell you from my own personal experience that I believe the mind has great power over the body. About 10 years ago, I was riding my bike in Chicago on my way to work and was hit by a white van. I was fortunate enough to bounce off a UPS truck with the driver inside. He came out when he heard the loud thud on his truck and protected me from the danger of getting hit by other vehicles. I don’t remember the impact, but I remember lying on the ground with a group of people around me as a fire truck and ambulance arrived. As the paramedics worked on me, I felt blood running down my head and severe pain all along the left side of my body where the van hit me. I remember meditating on one phrase from when I woke up on the ground and when I got into the ambulance, to when I arrived at the hospital and went into the MRI machine. “I am whole; I am OK.” I’m lucky to say I only had lots of bruising and nine stitches in my head, even though I wasn’t wearing a helmet (always wear a helmet!). The doctors and nurses were amazed that my injuries weren’t more severe and the impact to my head didn’t cause more damage. I truly believe that my mind told my body to be OK. If any of you have seen the movie, “Eat Pray Love” you may remember what a hard time Julia Roberts’ character had when she first started meditating. She couldn’t sit still, she got distracted and bored and she was frustrated she was doing it wrong. Many people have those feelings when they first begin a meditation practice. Some can have it even after years of practice. Remember that just as in yoga, meditation is a practice. Anything that is worth doing well involves practice. I encourage you to start meditating at least five minutes a day, or every other day or even just once a week. Try putting on some soothing music, set a five-minute timer, close your eyes and count to 10 in your head slowly. When you reach 10, start again. If any thoughts come into your mind, try to see them as ships sailing by. Don’t become attached to the ships — they are not docking with you, they are just floating away. Stay well and enlightened until next time!

Cancer Wellness

cW Library In her new memoir, “Not in Vain, A Promise Kept,” Melissa Mullamphy chronicles her experience as caregiver following her mother’s cancer diagnosis — a time marked by misdiagnosis, difficult treatments and inept doctors — and provides real-life details for how to advocate for yourself or your loved ones amidst a cancer diagnosis.

BY SARAH DIMURO

t was May 2010 and Melissa Mullamphy was living her best life. She was 39 and had been recently promoted to a management position at work; she was married to her highschool sweetheart, and they were in love with their 10-month old miracle baby. But then came a call from her mother. Over the phone, her mother told Mullamphy she was in a lot of pain and her stomach was significantly swollen. Mullamphy and her sister convinced their mother to go to the emergency room, where what they hoped would be a treatable bowel obstruction turned out to be stage IIIC ovarian cancer. From the moment of diagnosis, Mullamphy never left her mother’s side. She made it her full-time job to make sure she was provided the best care. Unfortunately, she was witness to inept doctors and nurses making the sort of careless mistakes you might only see in horror movies. “When I say mistakes, I don’t mean simple mistakes, like a nurse forgetting to turn on an IV,” Mullamphy says. “But lifealtering mistakes, such as misdiagnosis, lack of communication, reading CT scans wrong and chemotherapy poisoning.” Mullamphy’s mother had always been averse to doctors, and visited one only a handful of times in the past 40 years, but she knew she wasn’t getting the type of care and attention she deserved. One evening, Mullamphy’s mom was admitted to the hospital after her sister noticed her mother’s labored breathing. Her oncologist thought she seemed fine, but he agreed to admit her. Turns out, she was suffering from bilateral pulmonary embolisms and deep vein thrombosis — the furthest thing from fine. That was the night Mullamphy promised her mother she would do whatever she could to make sure the world knew and understood how the healthcare industry had betrayed her. Mullamphy wanted to believe her mother would survive this devastating disease, but less than seven months later, a few weeks shy of her 69th birthday, her mother succumbed to her illness. Mullamphy was heartbroken and struggled to process her death. But she remembered her promise to her mother, that her death would not be in vain, so she got to work on writing a book. She had documented every aspect of her mom’s treatment in detailed spreadsheets. Reviewing the copious notes and reports forced her to relive some of the worst days of her life. “Sometimes it was therapeutic,” Mullamphy says, “And at other times, it left me angry and added to my grief.” She started writing the book in 2011, the year after her mother died, but it wasn’t until December 2021 that it was ready for publication. Throughout the decade, she cycled through different versions of the book. At its fourth iteration, she felt it was ready to be useful to readers. “Every chapter of ‘Not in Vain, A Promise Kept’ represents the months my mom went through, from diagnosis to death.” Mullamphy says. “Each chapter ends with what I learned, what I would do differently and what the reader needs to do to advocate for themselves and their loved ones.” 60

Cancer Wellness

Mullamphy’s focus is on the importance of speaking up and participating in the care you or family members are receiving. Pay attention to everything, she says, and take lots of notes. “Ask hard questions and hold healthcare professionals accountable,” she says. Her book shines light on a particular event that terrified her — when she realized her mother was essentially being poisoned by the medication that was supposed to help her. Upon visiting their mother one day at the hospital, her sister could tell she was not doing well and texted Mullamphy at work. Mullamphy researched the drugs her mother was receiving, and when she got to the hospital, she knew her mother was suffering from toxicity. The oncologist said there was nothing to worry about, and shrugged it off, already one foot out the door to enjoy the weekend. He came back three days later and confirmed Mullamphy’s suspicions — her mother was toxic. To be clear, Mullamphy isn’t suggesting the loved one always knows better than the doctor, but asserts that “a little research when the stakes are high is important.” Building upon the positive response to her book, Mullamphy is excited to continue her role as a patient advocate. “I will never stop sharing my mom’s and my family’s experiences to help others,” Mullamphy says. She hopes the book can serve as a guide for all healthcare professionals on how to improve patient care and patient experiences. “I’m not the first one to lose a loved one to cancer,” Mullamphy says. “And will not be the last, but there is so much to be learned and changed in healthcare, and time is not on our side.”

Trekking North One young adult cancer survivor recounts her experience exploring the wilderness to find healing through connecting with nature and other survivors. BY LAUREN LOPRIORE

n July 27, 2022, eight young adult cancer survivors and one caregiver traveled to Duluth, Minnesota, with True North Treks (TNT). Duluth would be the meeting point before setting off for the Apostle Islands — a stunning, 22-island archipelago in Lake Superior, known for red sandstone sea caves, sandy beaches, picturesque lighthouses and historic shipwrecks. TNT is a nonprofit that aims to empower young adults and caregivers affected by cancer. Their programs are designed to help young adults “find direction through connection” after the very disconnecting experience of cancer. Along with immersive wilderness excursions, TNT also offers retreat-style experiences and training in mindfulness meditation and yoga. The real mission of each island-bound traveler was to find empowerment through connection with nature, their peers, and themselves, but the initial challenge was to pitch tents, paddle miles in kayaks, maneuver waves, battle bugs, journey caves, confront black bears and practice meditation. Daily discussions focused around themes like “accept/acknowledge,” “self compassion,” and “let it be/let it go.” From Duluth, the trek started with a sunny threemile paddle to Oak Island, followed by a hike up a steep incline to the first campsite. Wetsuits and personal flotation devices were hung on rope lines; bug spray engulfed the campsite; stir fry with veggies, chicken and tofu was prepared; meditation was practiced around the campfire; stars sparkled in the night sky above; and tired warriors snuggled into sleeping bags in shared tents. The next morning, the adventure continued to the islands of Raspberry, York, and Sand. Raspberry Island was black bear territory. The challenge for all, having never seen a black bear outside of a zoo, was walking around yelling “bear” and singing in large groups. The thimbleberries enjoyed in handfuls were a tasty highlight.

York was filled with sunshine for lunchtime and journaling to reflect on the theme or mantra each trekker hoped to take home with them. Before reaching the sandy beach campsite of Sand Island, paddling the sea caves was no easy feat. But the beautiful site was worth it. After a buggy but pleasant night on Sand Island, the morning was quiet, as trekkers enjoyed a silent walk on a flower-filled path to a lighthouse. Later, still in silence, gear was gathered and packed. Then it was time to head out on the choppy water, with storm clouds rolling in. After some quiet time on the water, the kayaks gathered as a pod. Keeping silent was serene and allowed for senses to be heightened. The kayaking and camping may have ended on Lake Superior, but the participants’ connection to each other was solidified as soon as phone numbers were swapped and messages started flowing on the trek back home.

I have been given the opportunity to experience multiple adventures with TNT. My husband and I attended a survivor and caregiver backpacking trek in the Upper Peninsula of Wisconsin. I also traveled Colorado’s Green River with survivors and explored the Red Rocks. TNT believes that connecting with the healing space found in nature can help young adults and caregivers re-magnetize their compasses and forge new pathways beyond their disease. They also believe in the healing to be found in connecting with others who have hiked a similar path, and connecting with oneself through mindful awareness practices. I am grateful to have found a healing connection with nature and with those who have shared similar experiences, while finding strength through meditation. My hope by sharing my experience is that more survivors and caregivers can take advantage of these opportunities — because, as many of us know, cancer is not an easy trek.

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