Cancer Wellness Magazine: The Supporters Issue (Winter 2021)

WINTER 2021

THE SUPPORTER ISSUE

ALLYN ROSE’S PATH TO PREVIVORSHIP

“GOING FLAT” PORTRAIT SERIES

WOMEN WHO LOVE “LIVING FLAT”

A BURNING ISSUE SOLDIERS BATTLE TOXIC BURN PITS

US $10.00

ARC helps me feel normal. – Said many cancer patients using ARC

To purchase and learn more about ARC, visit thergy.com

Feel Better While Getting Better. Inside and Out.

LETTER from the Editor

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Photo by Sarah Bell

here is no stronger nor more important word in my vocabulary today than “community.”

From our humble beginnings only a few short years ago, the concept of fostering a radically nurturing environment for what we have named the New Cancer Community has been paramount.

If there is one crucial requisite for creating, nurturing or simply being a part of our community, it is participation and communication. In this issue, you will find beautiful examples of people just like you and me who are redefining what it means to “show up” and participate. They are doing it in the now, in the present, in technicolor. Featured contributor Ana Fernatt is an edgy example of a self-aware communicator whose story on Hilaire Lockwood highlights today’s new breed of community builders.

This type of “all in” participation requires willingness to be vulnerable. In “Going Flat,” the first collection of our new, beautifully crafted cW portrait series, resident photographer Sarah Bell captures six women in their post-mastectomy bodies. Their vulnerability is empowering and mesmerizing.

Allyn Rose, the former beauty queen turned speaker and mother-to-be, has inspired a cult following in our community because of her willingness to show up and bare it all. On Instagram, she has shared everything from her challenges with fertility to instructions on performing your own self breast exam, and her willingness to do so is helping shine a brilliant spotlight on previvorship and prevention. Photographer Peter Mueller captured her essence beautifully on location in Frankfurt, Germany.

With a bright new year ahead of us, it is a pleasure to showcase the beauty and depth of these tremendous leaders in our community. For all of those featured in this outstanding issue: thank you for showing up, thank you for being vulnerable and, most of all, thank you for nurturing our souls with your stories. Happy New Year!

Cancer Wellness

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THE NEW BOOK BY JESSICA WALKER, FOUNDER OF BETTER + CO. AVAILABLE NOW ON AMAZON! A guide to navigating cancer.

Stories and real advice directly from those who’ve been there. @betterandcompany www.betterandcompany.com

WINTER 2021 58

IT’S ONLY NATURAL P. 30

STORIES OF HOPE In her new cW column, television host Whitney Reynolds spotlights members of the cancer community who are moving mountains.

INNOVATIONS & RESEARCH 63

MAKING IT PERSONAL New research shows immunotherapy isn’t always effective for young, female warriors— as well as a glimpse into why that may be.

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COOL, CALM & COLLECTED With its product ARC, “cancer care solutions” brand Thergy is changing the chemo and radiation game for your skin.

FASHION 78

WIGGING OUT New Orleans costuming staple Fifi Mahony’s puts a dramatic twist on wig shopping.

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A LABOR OF LOVE Bellina Caetano and cW have collaborated on a 10-piece jewelry collection abundant with meaning.

NUTRITION

BEAUTY

RESOURCES

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35

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MIND & BODY

ENTERTAINMENT

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CANCER & THE ENVIRONMENT

EASY DOES IT When you’re on the go, these simple but filling bites will keep you moving.

AT WITS’ END Warriors especially are burdened with mental health struggles during the pandemic, research shows.

GOING FLAT The beauty of six women “living flat” after undergoing mastectomies is highlighted in this new cW portrait series.

COMING UP ROSES Model and Miss USA titleholder Allyn Rose is empowering previvors everywhere as she advocates for breast cancer prevention.

BACK TO BUSINESS Working in close quarters again could be risky for warriors. Here’s what you need to know if you’re returning to work post-COVID.

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WHERE THERE’S SMOKE, THERE’S FIRE In the Middle East, U.S. military bases are partaking in open air burn pits—putting some soldiers’ health at risk.

Cancer Wellness

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CAYLEI VOGELZANG Editor-in-Chief BRITT JULIOUS Editorial Director

NATALIA ESPINOSA Creative Director FEATURES Senior Editor TAYLOR NOVAK Editor-at-Large MIRELA KOPIER

CONTRIBUTING WRITERS MELISSA BERRY, ALYSSE DALESSANDRO SANTIAGO, ANA FERNATT, MARIA C. HUNT, MAURA KELLER, LESLIE T. SNADOWSKY, MARIA TRIPODIS, ELIZABETH TUCKWELL, ERIKA R. WHITEHEAD

IN-HOUSE PHOTO & VIDEO SARAH BELL

CONTRIBUTING PHOTOGRAPHERS CHERYL GERBER, PETER MUELLER, NIKOMA ORTIZ

EDITORIAL ADVISORY BOARD NATALIE CRAIG, DENA DODD PERRY, SHIKHA JAIN, GAIL PRINS, GLEN STEVENS, MARIA TRIPODIS

OPERATIONS JACK SAXE-STARAL

ACCOUNT MANAGER ALLISON STERN

SOCIAL MEDIA STRATEGIST KALLIE APPLEGATE

EXECUTIVE ASSISTANT ISABEL GARCIA, 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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Cancer Wellness

CONTRIB UTORS

LESLIE T. SNADOWSKY

ANA FERNATT

Leslie is an award-winning on-air TV news and print reporter who has appeared on CNN Headline News, FOX News and multiple network TV affiliates around the nation. Her articles have been published by the Associated Press, Reuters, Bloomberg and The New York Post, and she’s a freelance rock photographer for Splash News. In this issue, she profiles New Orleans wig salon Fifi Mahony’s.

A multi-faceted millennial, Ana uses her work to better understand connection. Ana has hosted and produced two popular podcasts, “Champagne & Snark” and “I Don’t Know Anyone In LA.” She is a former columnist for the Chicago RedEye and has appeared on WGN-TV and radio, KISS-FM, WBEZ and the Steve Harvey talk show.

Ana also works as a strategist for national and international brands, specializing in social media.

WRITER

MELISSA BERRY

WRITER

WRITER

PETER MÜLLER

Melissa is a seven-year triple negative breast cancer survivor and founder of CancerFashionista.com. Throughout her breast cancer journey, Melissa struggled to look and feel her best. After scouring the internet for cancer-related beauty tips and products, she created CancerFashionista. com, a go-to resource for breast cancer patients and thrivers. Melissa has become a trusted voice within the community, and has been tapped by the Associated Press, Self, The Huffington Post and others to share her tips.

Peter began working with a camera by his seventh birthday. After earning a master’s in Business/Administration, he worked for PwC Consulting and was a partner at BearingPoint Consulting. In 2018, he left BearingPoint to follow his passion—photographing people. Peter’s studios are in Frankfurt and Berlin, but he travels across the world for his jobs and his workshops. He is also a founding member of YESwecan!cer, an app for patient-to-patient communication.

PHOTOGRAPHER

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cW Online WHAT YOU MAY HAVE MISSED

#FIGHTERFRIDAY: WINNING THE GAME OF HIS LIFE Coach Grey Giovanine of Augustana College says early screening and preparation for prostate cancer saved his life.

GOING FOR THE GOULD Famed NFL kicker Robbie Gould has turned the 2020-2021 football season into something unusual— a fundraiser for pediatric cancer.

SURVIVORSHIP FOR CAREGIVERS A cancer diagnosis can be life changing for both a patient and their caregivers, but many tools are available for people to cope.

More stories at CancerWellness.com

ON @CANCERWELLMAG, WE ASKED: What has helped you to navigate survivorship?

“I MEDITATE TO KEEP THOSE POSITIVE VIBES CONSISTENT. IT’S HARD.” - @MYHOLISTICVOYAGE “SELF-CARE HELPS: ACUPUNCTURE, MASSAGE, PHYSICAL THERAPY, CUPPING, PILATES, YOGA AND WALKING JUST TO NAME A FEW.” - @JST_BRWZIN “BUT IS IT REALLY CURED? WHEN I FINISHED MY RADIATION, MY DOCTOR [WOULDN’T] SAY THAT I’M CANCER FREE. HE JUST KEEPS ON TELLING ME THERE ARE NO ASSURANCES. MESSES UP MY HEAD.” - @MOMMYNICLAY “FEEL YOUR FEELINGS, KNOW THAT TIME IS A GREAT HEALER, AND TRUST THAT GOOD THINGS CAN ALSO COME OUT OF SURVIVING CANCER.” - @ANNABELCHOWN

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Cancer Wellness

Dear Cancer, You do not define me as a person. You are a part of me, but not the whole part.

The struggles that I have faced because of you have allowed me to re-evaluate the life that I’m living and see the world with a whole new perspective. You have given me the opportunity to grow as an individual and to live each day to the fullest with happiness and purpose!

Photo provided by Vanessa Delle Monache

Love, Vanessa @dearcancer

#cW MANTRA

the warrior

DR. RICK BROWN AS TOLD TO BRITT JULIOUS

The first time I was diagnosed with cancer was about 18 years ago.

That was melanoma. I don’t think I considered

To hear more from Rick, visit cancerwellness.com 10

Cancer Wellness

I’ve become more comfortable with waiting. No matter what I did, the body still had to heal itself and was on its own schedule. It is nothing I can speed along.

Most cancers give us time to contemplate our own death.

Death doesn’t frighten me. Healing and curing are not necessarily the same. I think we can be healed—bring wholeness and holiness into our lives—without ever receiving a cure. I think it’s possible to die from cancer healed—free and clear.

Photo by Sarah Bell

myself a cancer survivor. They removed tissue from my shoulder and then I never really thought much about it after that. Then, in 2016, around Memorial Day, I noticed some blood-tinged mucus in my stool. I treated it like I thought I knew how. I’m a chiropractic physician and a certified clinical nutritionist. But by the time we got to Labor Day and nothing changed, I thought I had to go in. Within the first minute or so, I could see a mass on my colonoscopy. They did a CT scan from my chin to my pelvis and what came back was a spot on my lung as well.

I cried. It was a real blow. It’s like, ‘What? One [cancer] isn’t enough?’ It’s two separate cancers. One is not metastasis from the other. Even the oncologist scratched their head a little bit.

After the diagnosis, I took charge. I cut back on carbs.

I was taking different supplements. What I was trying to do was keep the body healthy, but starve the cancer. I had lung surgery and rectal surgery. Where I drew the line in my treatment was that I did not want to do chemotherapy.

The gut surgeon said he wouldn’t touch me unless I did something. I agreed to do radiation therapy.

I was looking for something to help me along the way. Cannabis was absolutely wonderful. It was a most compassionate herb. It brought down the nausea. It got me off the pain medication quite quickly. It also really opened my heart. It made me sensitive to the beauty that surrounds us. I was feeling a lot of love. It also gave me insight. It made me a lot more aware of myself and how I handle my stress. I don’t know what my journey would have been without it.

I think we can be healed— bring wholeness and holiness into our lives—

without ever receiving a cure.

cW Chat

Mighty + Bright creator Sara Olsher is tackling difficult conversations with children through a line of books about coping with change and chaos.

BY TAYLOR NOVAK

Photo courtesy of Sara Olsher

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any of the best ideas come from somebody realizing that a pressing problem needs a solution and having the ability to offer an answer. Sara Olsher’s story is no exception.

Diagnosed with invasive breast cancer in 2017, Olsher was desperate to find materials that could explain to her six-year-old daughter what was happening. She hunted endlessly for children’s books but was left feeling frustrated after every search. “[The books] were cute, but none of them did what I wanted,” Olsher recalls. “I wanted to explain what cancer actually is because kids can understand. When we start explaining things in ways that are cutesy or kind of dumbed down — talking down to them — it makes the situation worse.”

Throughout this process, Olsher quickly became exhausted trying to also juggle her full-time marketing job, parenting and treatment. Both she and her daughter were struggling with the changes. Having gone through a draining divorce shortly before her diagnosis, Olsher describes her cancer experience as a wake-up call.

“The divorce was hard,” Olsher says. “But as soon as I got cancer, I was like, ‘People really, really suffer in this life. And people need help.’ I really found that focusing on how to help other people was what was getting me through my treatment.”

On the side, Olsher had a small business, Californiabased Mighty + Bright, providing magnetic co-parenting calendars to children of divorced parents. She had created the product for her daughter after her own divorce. While Olsher, who also has a background in illustration and psychology, no longer had the capacity for her marketing job during treatment, she did have extra time to focus on Mighty + Bright.

This newfound free time coupled with her frustration at the lack of adequate materials to explain her cancer diagnosis to her daughter led to Olsher writing and illustrating a children’s book, “What Happens When Someone I Love Has Cancer,” and self-publishing it through Mighty + Bright. Drawing inspiration from her co-parenting calendar, Olsher also created a similar magnetic dry-erase calendar featuring a steel button set describing a guardian’s cancer treatment (such as “doctor,” “tired days,” “good days” and light bonding activities like reading or taking a walk).

The set also comes with a psychologist-approved guide for using the chart and talking to children about cancer.

“I realized that I actually found a way to simplify the cancer experience for kids,” Olsher says. “I had taken something that was incredibly chaotic and confusing and was able to simplify it. It was something that I would have purchased for myself had it existed, and it was kind of like a no-brainer that this needs to be something people have.”

She’s since written and illustrated “What Happens When Parents Get Divorced” to accompany the co-parenting

calendar and “What Happens When School Starts Again,” a book and calendar set to help children adjust to schooling during the COVID-19 virus. Her latest project, “What Happens When a Kid Has Cancer,” raised nearly $11,000 on Kickstarter in autumn 2020 to print and distribute the set at various children’s hospitals through Mighty + Bright’s nonprofit arm, Resilience Campaign.

Olsher partners with professionals in the field of whatever topic she’s working on, including doctors, counselors and child life specialists. Oftentimes, ideas for her next set come from parents who reach out to her with a need for certain material. All in all, due to her self-production capability and having total creative control, Olsher can turn out a new set in less than two months — making her ultimate goal with Mighty + Bright that much more attainable.

“There’s certain things that are the same, no matter what your current ‘thing’ is,” Olsher says. “I’m building a community around that, where basically parents can come together in a supportive environment. I really want them to feel like they have a place where they can go to help themselves rebuild their lives after something difficult happens […] and find the resources they need so their kids can be OK. And then they can take a breath.”

Find out more about Mighty + Bright and its products at mightyandbright.com. Check out Olsher’s podcast, “Raising Resilience,” for more information on parenting during difficult times. To learn more about Olsher, visit saraolsher.com.

Cancer Wellness

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Special Delivery Share the love or treat yourself with this roundup of care packages that curate thoughtful goodies with cancer warriors in mind.

Photo courtesy of Kits to Heart

BY TAYLOR NOVAK

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Cancer Wellness

KITS TO HEART Sonia Su is well-acquainted with the impact of paying it forward. While undergoing treatment for a diagnosis of Non-Hodgkin lymphoma in her mid-20s in 2019, Su found a care package sitting on her hospital bed, left by a former patient. The gift included an encouraging note, snacks and other small goodies that not only brightened Su’s hospital stay but also became the inspiration behind her budding nonprofit, Kits to Heart.

“That gift really gave me the energy and motivation to keep going,” says Su. “As soon as I saw that package, I was like, ‘OK, I’m doing this.’ I just thought it was such a wonderful idea, and, especially from a stranger, so thoughtful to give this to patients.”

The three-time cancer warrior believes care packages fill a gap for warriors when it comes to psychosocial care.

Family and friends may be well-intentioned but are experiencing their own grief and stress. Additionally, hospitals may not have the resources to offer adequate care to sufficiently meet all of your psychosocial needs.

“Simply, we need to care better,” Su says. “Cancer at any age is full of anxiety, uncertainty and distress, and research shows that this does have significant repercussions. This lack of psychosocial care, which is recognized as a human right, can be pretty detrimental to overall well-being.”

Su was in her final semester of graduate school at Georgetown University when she decided to turn the passion project of providing care kits to cancer warriors into more than a hobby. Taking advantage of Georgetown’s resources, Su enrolled in entrepreneur courses that culminated in a pitch competition, Bark Tank, in the spring of 2020. Kits to Heart was one of eight finalists and, based on the promising feedback she received from judges, Su decided the cause was one worth pursuing. She incorporated Kits to Heart and received nonprofit certification upon graduating.

Drawing from her own experiences with cancer, Su thoughtfully curates the items included in Kits to Heart’s packages. A handmade card is always present, and other goodies include protein snacks, ginger chews, lip balm, tea, hand sanitizer, face masks or resource pamphlets. Su also emphasizes wellness and sustainability when possible.

“I really want to promote this idea of well-being for not only our bodies but also for our environment,” Su says. “I do tons of research into the products that I would feel safe putting in my own body, but also [into] companies that care about sustainability. It’s really about making sure I provide safe items.”

In less than a year and throughout a pandemic, the volunteer-based organization has managed to provide more than 500 of these mindful care kits to cancer warriors in at least eight different hospitals across the Baltimore and Washington D.C. metro areas so far, with plans to eventually expand. The response from recipients has been resounding.

“Feedback has been really heartwarming,” says Su. “I have received many messages from patients who say that the kit has brought them to tears, which really makes what we do that much more meaningful. I just recently received one response saying that [a recipient] was so touched that she wants to pay it forward, so she donated to sponsor a kit for someone else. It’d be great to continue having such a response.”

Kits to Heart distributes care packages on a request basis and are not for sale. If you’d like to request a kit or sponsor a kit for someone else, visit kitstoheart.org.

TEAM CURE For the younger warriors out there, Team Cure provides care packages put together by kids and teens. At age 12, Lindsey Pacios formed the nonprofit after raising funds to provide a care package for her friend undergoing treatment for osteosarcoma. Since 2016, Team Cure has sent more than 400 care packages to children and teenagers fighting cancer in the U.S., Canada, Australia and more.

The box of goods is custom to a recipient’s interests and can include anything from snacks to books to games to give young warriors an exciting surprise during difficult times.

To request a care package for a child or teen, visit teamcure.org/ services.

VIVER JOY Looking for a little more than a one-time gift box? Viver Joy has you covered throughout treatment with its subscription series of three unique offerings. Each package has a separate healing theme, color and content that builds upon the previous one, with an ultimate goal of rebalancing your mind and body. The boxes are curated by pharmaceutical executive and breast cancer warrior Vicki Barghout alongside integrative medicine practitioner Jodi Hutchinson with items to help restore your internal balance, including protein powder, herb growing kits, coloring books and tea.

To purchase a box or subscription for yourself or someone else, visit viverjoy.com.

HOPE + BEAUTY It’s no secret that treatment can affect you outwardly just as much as inwardly. For those wanting to regain a sense of normalcy and engage in some good old-fashioned self-care, Hope + Beauty offers cancer warriors hand-selected “Chemo Companion Products” that are formulated with your situation in mind. Creator and surgical oncologist Dr. Shyamali Singhal has two decades worth of experience on the side effects treatment can prompt on a warrior, both physically and mentally. Feeling good is sometimes half the battle, which is why Hope + Beauty offers body care products for sensitive skin, hair and nails to treat yourself.

To purchase a box for yourself or someone else, visit shophopeandbeauty.com.

ROCK THE TREATMENT

If you want a care package specifically tailored to certain treatment experiences like chemotherapy or radiation, look no further than Rock the Treatment. These specialized gift baskets include items for people of all ages and genders based on input from cancer warriors, medical professionals and caregivers. A radiation package includes items to soothe, calm and cool irritated skin and energy-boosting snacks to lift you up. Opting for a chemotherapy package provides you with nausea reducers, nourishing bites and simple puzzles to keep your mind occupied.

To purchase a basket for yourself or someone else, visit rockthetreatment.com/shop.

nutrition

16 EASY DOES IT

These straightforward but hearty recipes are a simple, quick way to keep your stomach happy and healthy while on the go.

BY MARIA TRIPODIS 16

Cancer Wellness

Photos by Sarah Bell

easy does it

ROASTED BROCCOLI WITH MISO HONEY

GO-TO SOFT BOILED EGGS

Yield: 2 servings

Yield: 1 serving

3 cups of broccoli florets 1 tablespoon white miso 1 tablespoon honey 2 tablespoons extra virgin olive oil 1 teaspoon cinnamon 1 teaspoon kosher salt

2 eggs Flaky sea salt to top (preferably Maldon)

PREPARATION:

1. Heat oven to 375 F. Line a large baking sheet with aluminum foil.

2. Add broccoli florets to a large mixing bowl.

3. In a food processor, combine miso, honey, olive oil, cinnamon and salt.

4. Add miso mixture to mixing bowl until broccoli is evenly coated.

5. Pour florets onto the baking sheet and spread evenly, forming a single layer.

6. Bake for 45 minutes or until broccoli starts to brown and crisp.

7. Remove from oven and let cool for 10 minutes.

PREPARATION:

1. Fill a saucepan with 1/2 inch of water over high heat. Cover and bring to a boil.

2. Place 2 eggs into the saucepan.

Cover and reduce heat to medium.

3. Set a timer for 6 1/2 minutes, then remove eggs from heat.

4. Discard the hot water and fill the saucepan with cold water and ice. Let sit for 2 minutes.

5. Carefully peel the eggs. Cut open, and top with flaky sea salt.

NOTE: Make sure you place the eggs in the boiling water slowly to avoid cracking.

For very runny yolks, wait for 6 minutes.

For less runny yolks, wait for 7 minutes.

KALE CHIPS WITH GRATED PARMESAN Yield: 2 servings 6 large lacinato or curly kale leaves 2 tablespoons extra virgin olive oil 1 teaspoon sea salt 1 teaspoon garlic powder Grated parmesan cheese or nutritional yeast to top

PREPARATION:

1. Heat oven to 350 F. Line a large baking sheet with aluminum foil.

2. Wash kale thoroughly under running water. Pat dry.

3. Remove leaves from large stems and tear into 2-inch pieces.

4. Spread torn kale leaves evenly on a baking sheet in a single layer. Pour olive oil on kale and massage into leaves until all surfaces are covered in oil.

5. Sprinkle salt and garlic powder on kale leaves.

6. Bake for 10 minutes or until leaves shrivel and become crisp.

7. Top with grated parmesan cheese or nutritional yeast for a vegan option.

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ROASTED ROOT VEGETABLES WITH GOAT CHEESE AND MARCONA ALMONDS Yield: 4 servings 4 large carrots (preferably tricolored: orange, yellow and purple) 2 red beets 1 Japanese sweet potato 1/2 large red onion 2 tablespoons extra virgin olive oil 1 teaspoon kosher salt 1 teaspoon garlic powder 1/4 cup goat cheese, crumbled 1/2 cup Marcona almonds

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Cancer Wellness

PREPARATION:

1. Heat oven to 375 F. Line a large baking sheet with aluminum foil.

2. Clean root vegetables under running water. Pat dry.

3. Peel carrots and beets with a vegetable peeler or a sharp knife.

4. Cut carrots, beets, sweet potato and onion into 2-inch pieces and add to a large bowl.

5. Sprinkle with salt and garlic powder until vegetables are evenly coated.

6. Add vegetables to the lined baking sheet and spread evenly to form a single layer.

7. Bake for 45-55 minutes or until vegetables begin to brown on the edges.

Cool for 10 minutes.

8. Pour vegetables into a large bowl and add goat cheese and almonds. Mix until evenly distributed.

REFRESHING TUNA SALAD Yield: 4 servings Four 5-ounce cans of solid white albacore tuna, drained 2 large celery stalks, chopped 1/2 large white onion, chopped 1/4 cup fresh cilantro leaves, chopped 1/2 cup walnuts, chopped 1/2 tablespoon extra virgin olive oil 1 tablespoon Dijon mustard Juice of 1/2 lemon 1/2 teaspoon kosher salt 1/4 teaspoon pepper

PREPARATION:

1. Add all ingredients to a large mixing bowl. Mix until well combined.

2. Serve immediately or store in the refrigerator for up to 2 weeks.

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Your fiercest ally in the pursuit of true healing

Meet Dr. Shelly Smekens, our naturopathic oncology expert Shelly Smekens is a naturopathic physician who specializes in supporting patients through all stages of cancer from prevention, active treatment and survivorship.

As a naturopath physician, she combines the best conventional primary care with a functional approach to health. Providing a personalized approach, Shelly leverages her extensive experience at Cancer Treatment Centers of America to guide her patients safely through even the most complex diagnoses.

Her deep upstanding and familiarity with conventional oncology protocols, drug interactions, and nutrition enables her to provide a comprehensive approach to the cancer patient.

A clear and complete picture of your health.

Focused on the patient as a whole, Raden works to promote health, prevent disease, and increase the longevity of patients of all types, from elite athletes and those suffering from chronic illness, to children, seniors, and every age in between. As experts in both conventional and functional medicine, we employ thoughtful investigation and innovative medical testing to provide you with the tools to obtain and sustain your optimal health.

IV Therapy Providing 100% absorption, IV therapy can provide nutrients to compliment your treatment including high dose vitamin C protocols. radenwellness.com

Nutrition By focusing on your unique metabolic needs, we put together a plan for healing that works for you.

200 Green Bay Rd. Highwood, IL 60040

Functional Medicine A curated approach to health to provide patients of any age or stage of life the tools that claim lifelong health and vitality.

(847) 235-2139

mind

22 ASK THE CANCER COACH 23 AT WITS’ END 25 ASK THE DOCTOR 26 TRUSTING YOUR GUT

body

ASK THE CW CANCER COACH In this issue’s column, cW’s resident cancer coach Mirela Kopier explores the necessity of caring for yourself while caring for others.

BY MIRELA KOPIER

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Cancer Wellness

Photo by Sarah Bell

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he caretakers and supporters of those who have you take time to enjoy them. As much as your loved one been diagnosed with cancer are more crucial to needs essential nourishment, so do you! If you’re looking a patient’s journey than anyone or anything else. for inspiration, you can find several amazing and nutriYou may be a chemo buddy, scheduler, workout tious recipes in this issue. companion or all three. Whether a supporter goes to Some of you who may not be full-time caretakers, but one chemo treatment or all of them, makes all the phone are still committed to helping a loved one battle cancer. calls needed for treatment, or takes the patient for a walk I have been blessed to fill that role a number of times. I and holds their hand, the patient’s support system is an supported a dear friend battling cancer that started in her integral part of the process. Supporters can be the rock spine before metastasizing to her brain. With all of my that a patient needs, selflessly putting everything on hold knowledge and resources, I wanted to jump in and help because there is no other option for them and their loved her in every possible way. From doctor and legal referrals one. But, when taking care of others, it is also imperative to charity connections, I offered everything I had. I folfor supporters to take care of themselves. lowed up as much as I could and became part of the meal

The American Cancer Society train that our group of girl friends set up for describes caregivers as unpaid loved ones Cancer doesn’t care her. When I saw her, I was as positive and who give physical and emotional care to upbeat as possible. I did whatever I could to how much we do, a person with cancer. Caretakers may be make her smile. spouses, partners, family members or close but that also doesn’t However, at her funeral, I felt guilty. As friends, and more often than not, they are sat with my husband, I saw the myriad of mean we stop trying. Iphotos not trained for the caregiver job. Still, they her family put together honoring her are the lifeline for the person with cancer. I We never stop trying. life. I felt like I should’ve done more. I could have heard and read hundreds of supporter have made her listen to me about getting stories and all of them are unique. In “Chicken Soup for another opinion or perhaps I could have been there more the Soul: The Cancer Book,” a woman named Cynthia often. As I cried and beat myself up, I looked at the rest of wrote about her husband who was diagnosed with lung our friends. I realized in that moment that I did do enough, cancer. Cynthia was thrown into a caretaker role that as did all of us. Cancer doesn’t care how much we do, but she had no natural inclination to fulfill. She explained, that also doesn’t mean we stop trying. We never stop “While I might not have always loved the caretaker’s job, trying. As a caretaker and supporter, you do everything I’ve always loved the patient.” you can for your loved one. In the moments when you feel That mindset is key—love for the patient is the driving powerless, know that that is OK, too. force! Caretakers would do anything and search anywhere There may be many books, blogs, articles and podto find a cure to make sure their loved one stays put. But as casts explaining cancer and what it means to take care of a caretaker, in order to do that, one must also take care of those who have been diagnosed. However, there aren’t themselves! You may think you can sleep, eat and exercise as many step-by-step guides that explain what to do or when your loved one feels better. And while that statement say, how to act or feel. Each cancer experience is differmay be true, you might be more helpful to a loved one if ent because each person is different. The same is true for you do these things while you are actively caretaking. caretakers.

Of course, most of this depends on the role of the I encourage all caretakers to take care of yourselves, caretaker in each scenario. Spouses who are the sole careand don’t feel guilty for doing it. The better you care for takers may find it harder to get away. Still, it is important yourself, the better you care for others. I applaud you and to find time to recharge your batteries when you can. Try I stand with you. reading a couple of chapters of a good book, soaking in the tub or meditating. If you are in charge of meals, make sure Stay well and enlightened, until next time!

At Wits’ End

Having difficulty coping with the mental toll of COVID-19?

You’re not alone. Research has found that warriors’ psychosocial needs aren’t being adequately addressed during the pandemic.

BY TAYLOR NOVAK

Cancer Wellness

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hether it involves previvorship, diagnosis or surspeaking to a new therapist over the phone or via Zoom not vivorship, it takes a village of professionals in as effective as talking to someone in-person. The Psychovarying fields to ensure a patient is on the best Oncology study found that telehealth assessments between path for their personal journey. This multidiscipatient and specialist were “more difficult, particularly if plinary approach in cancer care can be a well-oiled machine there was no existing relationship between the two, making where all parts can efficiently work together in harmony to it harder to form a therapeutic alliance.” It’s important to try be successful. With the introduction of the novel coronavirus, different methods and see what works best for you. this process has become fragmented, especially when it comes For those who find that virtual therapy doesn’t resonate, to addressing mental health concerns among cancer warriors. there are some other practices one can take up in the mean Throughout the COVID-19 pandemic, warriors not time. Little found the meditation apps Calm and Headspace only have limited or no access to physical health services, during the pandemic and she still uses them in addition to but mental health services have also been impacted. An her therapy. The breathing techniques for various forms of October 2020 World Health Organization survey found anxiety or depression have helped keep her grounded, she that the pandemic has disrupted or halted mental health says. The platforms also offer a community feature so you services in 93 percent of countries worldwide. In a time can connect with others going through similar experiences. where most are experiencing increased grief, anxiety, fear

This sense of community is extremely valuable. and isolation, warriors are especially vulnerable.

Warriors may have been experiencing some isolation

Due to warriors being immunocompromised or highprior to the pandemic due to rigorous treatments or an risk for contracting the COVID-19 virus, health care profesimmunocompromised status, and lockdowns have only sionals are more cautious than ever when it comes to meeting increased that physical and psychological burden. While face-to-face for outpatient visits. While this bodes better for connecting virtually with others—whether strangers or a warrior’s physical health than frequent trips to hospitals or loved ones—may not feel the same as being together in numerous in-person interactions, a 2020 U.K. study in journal person, having someone to lean on can make all the difPsycho-Oncology found that this lack of face-to-face monitorference when it comes to your mental health. ing results in less warriors being referred While it’s fortunate that these addito psychosocial services. For those who tional resources exist, there is cause An October 2020 World do engage in psychosocial services, the for concern on the way psychosocial Health Organization survey needs of cancer warriors have still quality of care is often diminished.

North Carolina minister and influ- found that the pandemic has managed to fall through the cracks encer Tamron Little is a mesothelioma amid a worldwide health crisis. disrupted or halted mental warrior who says before the COVID-19

In the U.S., the Department of pandemic, her mental health—which health services in 93 percent Health & Human Services does includes a PTSD diagnosis—was fairly discuss available mental health serof countries worldwide. manageable. However, after the novel vices to interested parties who have coronavirus began greatly impacting life in the U.S., Little tested positive for SARS-CoV-2. But for warriors who noticed her mental health struggles worsening. either have not contracted the virus or have contracted “I think COVID has interrupted a lot of things, and it and don’t recognize that mental health assistance is an having to stay socially distanced was hard,” says Little. “To option, it may not be apparent that such resources exist or be honest, I was petrified when I heard about COVID-19. are needed. If someone is experiencing psychological strugMy husband is also a cancer survivor, so I was so scared that gles, they may not be motivated to reach out for help or may one of us would catch it. I was really on edge all the time feel uncomfortable or embarrassed due to stigma. With and I think that’s what triggered my anxiety and caused decreased face-to-face care during the pandemic, many constant panic attacks. It affected my mental health greatly.” warriors’ mental health can then take a backseat if their Little eventually contracted the virus. In August 2020, doctor isn’t following up on symptoms beyond physical. she experienced shortness of breath, a partially collapsed Researchers behind the Psycho-Oncology study are lung and dehydration, as well as an ambulance ride to the calling for a period of global reflection from professionals hospital at one point for low oxygen levels. She says her to learn from this lapse in psychosocial care for cancer anxiety “went through the roof ” while ill due to the uncerwarriors. Services, teams and warriors have adapted in tainty of how she would weather the virus as a warrior. creative and flexible ways, but barriers and limitations Dealing with immense bouts of fear, Little worried that do still exist. It’s important to continue monitoring the having the virus might mean facing the end of her life. strengths and weaknesses of current options to better

This increased stress and anxiety for warriors can serve the oncology world when it comes to mental health almost be as harmful as the virus to one’s overall well-bemoving forward. ing. Chronic stress from anxiety, panic attacks or sleeplessness can materialize physically and impact your health.

Managing your mental health should be a top priority in these unprecedented times.

I f you’re currently experiencing increased mental or emotional dis Little started attending therapy, which she says has tress, consult with your health care team for resources or a plan of helped immensely. With the pandemic, most counseling and action. For additional resources and tools in the U.S., visit hhs.gov/ therapy services have shifted to virtual or phone appointcoronavirus/mental-health-and-coping. For a comprehensive list of ments. Telehealth sessions can work for certain warriors and resources on managing your mental health from home, including even increase access to care for some, but others may find spaces to connect with others, visit mhanational.org or nami.org.

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Cancer Wellness

ASK THE DOCTOR After the death of beloved actor and “Black Panther” hero Chadwick Boseman last summer, many wondered how a seemingly healthy young man could contract colon cancer. We talked to John L. Marshall, M.D., the director of The Ruesch Center for the Cure of GI Cancers and the chief of hematology and oncology at the Lombardi Comprehensive Cancer Center at Georgetown University, to find answers.

Photo courtesy of Dr. John L. Marshall , M.D.

BY BRITT JULIOUS

WHY ARE THERE RISING RATES OF YOUNGER PEOPLE GETTING COLORECTAL CANCERS? We started to recognize it about 10 years ago. This is a global phenomenon. At first, people said, “Oh, it’s because people aren’t exercising or [they’re] overweight or [they’re] not eating correctly, watching too much television.” But when we really looked at that, it wasn’t true. These were fit people. I like to joke that I think of them as marathon-running, cardboard-eating colon cancer patients.

Then people said, “Oh, they’re familial cancers.

They’re inheriting them.” And while we can’t possibly rule that out completely, what we do know about inherited cancer does not explain the problem. So it is not that.

That leaves some sort of environmental influence that’s changed over this time. And the leading theory, or one of the leading theories as to what’s going on, [is] that we somehow altered what we call our microbiome, the bacteria that lives in and around us that make up our stool, that’s coating the insides of our mouths. It’s all over our skin and is actually an important part of our health.

Traditionally, we have tried to sterilize all of those surfaces. Whether it’s through the use of antibiotics or cosmetic products [or] things that have changed in our food, we’ve somehow altered our microbiomes. That is probably partially explaining what is going on with this issue.

WHAT IS BEING DONE TO ADDRESS THESE CHANGES? I would say that we are trying to learn as fast as we can.

We can’t simply prescribe going out and eating dirt to everyone, although that might be a good solution. Said a different way, this is a credible opportunity for us to learn some important lessons about our health and our interaction with our environment and the world around us. If we crack some of this, I think it will lead to not only discoveries around colon cancer, but also things like allergies and asthma and

other immunologic abnormalities that people are suffering from now that they weren’t three decades ago. My hope is that this line of research will actually yield a great deal of positive insights to our [overall] health, not just cancer health.

WHAT ARE SOME THINGS PEOPLE SHOULD KNOW ABOUT THE RISING RATES OF COLORECTAL CANCERS? We recognize that these symptoms are often common symptoms of other things. It could be rectal bleeding and people have hemorrhoids. It could be a change in bowel habits and people have that on occasion. So generally speaking, when somebody of the age of 65 or 70 has any one of those symptoms, we immediately think colon cancer and immediately screen them. But when a 35-yearold mother of two with some hemorrhoids has some bleeding [and] comes to the doctor, they say, “Oh, it’s almost certainly your hemorrhoids.” And they wave it away.

It’s not only patient awareness that this could be colon cancer in young people. It’s also healthcare providers—whether it’s an urgent care physician, a primary doc, an OB-GYN or even an emergency room doc to recognize that those symptoms could be colorectal cancer.

WHY ARE THERE LATER STAGE DIAGNOSES OR HIGHER MORTALITY RATES IN BLACK AND LATINX COMMUNITIES? We are biologically the same. So I think this may be external to biology. We can only go so far to differences in nutrition habits or exercise. For me at least, we know that there are economic access issues. We know there are cultural issues in being able to identify these problems and seek out and get access to the help you need early enough. I think that’s the sort of thing we can fix without much studying further. I think we need to first make sure everyone is getting equal access to optimal cancer care.

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Trusting Your Gut By learning to fully follow her intuition and listen to her body, yogi Hilaire Lockwood was able to find peace amid chaos.

Photo courtesy of Hilaire Lockwood

BY ANA FERNATT

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Cancer Wellness

F

or Hilaire Lockwood, founder of Hilltop Yoga, the dissections spaced about 14 weeks apart each, with a fifth cancer journey was one where she had to trust dissection three years later. Lockwood also explored treatherself. A 15-year yogi at the time of diagnosis, ments like Reiki, massages and acupuncture.

Lockwood was meditating when she touched her It was surrounding herself with the right people that led neck and had a dark vision of illness. Diagnosed with metto a major discovery. After undergoing radiation, she was introastatic resistant thyroid cancer, Lockwood was given a 1 duced to a doctor through a friend of a friend who told her to get percent chance of survival. It was this same practice of tested for resistance before getting more radiation. Lockwood meditating that she credits with saving her life. “It is why said she had to “fight like hell” to get the test, but it came back I’m here. It’s why I’m calmer than I would be,” she says. showing that her cancer was resistant and metastatic which put Lockwood has long known that she was intuitive, someone her in the 1 percent of survival with thyroid cancer. Without whose senses of inner knowing are heightened. Her “hippie” this discovery, it is likely that Lockwood would have received parents encouraged her to develop her gifts, never questioning radiation an additional three or four times. or challenging things like her imaginary friends. “I think I’ve

The most miraculous moment came at one of the always really trusted that space. I never got to the point where I toughest. Between her second and third surgeries, a CAT felt like that was weird or awkward,” says Lockwood. scan showed that the cancer had spread into the soft tissue Even for someone like Lockwood, trusting that inner of her chest, which would have been dire in her situation. voice came with challenges leading up to her cancer diagAfterwards, Lockwood describes sitting in the middle of nosis and treatment. At first, she brushed off these early a healing circle, surrounded by rose petals and her most signs, including a visit to a psychic who told her that dedicated students, as they sent energy to her. When she cancer was present in her chart and a letter from a friend received another scan, the cancer in her chest was gone. whose story of cancer felt somehow familiar.

For Lockwood, who believes her soul chose cancer “I feel like, if I had really been paying attention, then I would to teach her in this lifetime, having her thyroid abated have listened in 2000 to the signs that I was getting rather than became a lesson in the pace her life had taken. “I had to listening in 2004 when it was further along than really take a step back and make sure that I it would have been,” she says. In her moments was paying attention to all of the pieces of of meditation, Lockwood explored whether she “We have to recognize my life. And that this was a true universal was trying to control the message by being too that together — that smack across the face to say, stop, and see attached to what it might mean. Eventually, she you actually have and pay attention my body, my mind, my what couldn’t ignore what she was feeling and seeing. to the quality of every moment,” she says. soul — they have to This is why lesson plans aren’t allowed in The heat she felt from the middle and left side of her neck became consistent enough where she her yoga studio. Teachers are asked to walk work together to heal.” in, took the step to investigate further. feel the room and go from there.

After four local surgeons told her it was nothing, she It was through regular practice of the eight limbs of yoga found herself in a radiologist’s office without a referral or an that Lockwood was able to keep pushing forward. The eight appointment, crying in the waiting room and asking to be limbs are well-rounded guidelines that extend beyond the seen. The receptionist was preparing to call security when most commonly known asana (the physical aspect of yoga) and the radiologist appeared, calming her down and agreeing to dhyana (meditation) to include ethics, self-discipline, breath take a look. He performed an ultrasound which was immedicontrol, detachment and concentration. She was teaching ately followed by a triple neck biopsy. From what he saw, he yoga within a week of her surgeries because she believes it said it could be either a cold or cancer but that he thought was helping her heal. As a teacher, she got just as much out it was cancer. Armed with this information, Lockwood was of working with students to deepen their practice as she was able to get the official diagnosis from her doctor. giving. “This was part of me being able to get up and continue

“I think what’s most important is that we have to to put one foot in front of the other,” she says. remember that it’s our body and, no matter what they’re In these places of trauma, it can be easy to blame the telling us to do, it’s got to feel right for us,” says Lockwood. body. “If, through my process, I were to pick apart my body When it came to picking her medical team, Lockwood and say ‘My body is bad. My body is what is sick. My body realized that she needed to listen to her inner knowing is separate from me,’ I’d probably be done,” Lockwood again and advocate for the right treatment and doctors. “I says.“We have to recognize that together — that my body, think we all kind of do the same thing at first,” she says. my mind, my soul — they have to work together to heal.”

“We do what they tell us to do and we go to the person For those looking to deepen this body/mind/soul connecthat’s in town and I think that’s a bad plan. I really listion, Lockwood recommends starting with your breath and tened to my heart and to my soul. The people you have observing throughout the day whether you’re actually breathon your team, that’s everything—everything. You have to ing. In times of high stress, it can be surprising to witness that trust them. They have to actually listen to you.” you have stopped breathing or are holding your breath. If you

This is important, Lockwood points out, because catch this, she recommends taking a deep breath, because this it became harder to know the voice of her intuition while influx of oxygen and the act of releasing will help the brain reset. undergoing treatments. She explains, “I got to that place

Clear of cancer, Lockwood says meditation and actiwhere, you know, I was well and I thought I was sick or I was vating the trust in her inner knowing is still very important. sick and I thought I was well. Just because we’re so deeply “Meditation is everything. It just is. It changes everything. I do attached to the outcome that it’s very difficult to see clearly.” my best to sit an hour every day. And if I don’t get an hour, I During the course of her cancer, Lockwood received make sure that it’s at least 30 minutes. In an hour, everything radiation, her thyroid was abated and she had four neck shifts for me,” she says. Set a timer and try it yourself.

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beauty 30 CHRIS-TIA DONALDSON 32 SUPER CLEAN SOLUTIONS

It’s Only Natural Two breast cancer diagnoses in her 30s have not stopped Chris-Tia Donaldson, lawyer and founder of natural hair care brand Thank God It’s Natural, from living her best life in the present.

Photo by Sarah Bell

BY BRITT JULIOUS

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Cancer Wellness

“I

absolutely feel safe. And now I know I’m safe,” says I’m surrounded by a family of angels, ancestors and spiritual Chris-Tia Donaldson. After two breast cancer guides that are leading me into the right direction,” she says. diagnoses in less than five years, Donaldson’s

The pandemic also helped her tap into silence. declaration may seem unusual. But it has taken Describing this time as a “blessing,” Donaldson says this the lawyer and founder of popular natural hair care brand past year gave her time to make her health a priority. “It was Thank God It’s Natural (TGIN) such harrowing trials and a real time to just get quiet and meditate, honor my body and tribulations in her personal and professional life for her to put my health first,” she says. “Just put myself first in a way gain a more positive outlook on life. that I think most people [don’t] get to experience because we

Based in Chicago but known internationally, have so many distractions when outside is open for real.”

Donaldson has become a leading figure in the natural hair Ever ambitious, Donaldson continues to push herself, movement among the black community. Once a small side but this time, her efforts are for a cause more closely tied project, TGIN has soared in scale (their collection includes to her new everyday life. Donaldson launched the tgin body products and a men’s line) and in popularity and Foundation, a 501(c)(3) not-for-profit organization that aims can be found in stores like Whole Foods, Target and Ulta to support uninsured women undergoing treatment for Beauty.” But prior to starting her business, Donaldson, a breast cancer. The tgin Foundation also aims to highlight Harvard Law School alumna, was a full-time attorney for health disparities on survivor outcomes. According to the Oracle, one of the world’s largest software companies. organization, in the city of Chicago, where it and Cancer Her diagnosis in 2015 at age 36 came as an understandWellness are based, black women are 42 percent more likely able shock. Although she described herself as a “workaholic,” to die from breast cancer than the general population.

Donaldson was also a vegetarian and considered herself “healthy.”

The foundation also aims to fuel awareness about

“I did drink, but I worked out like religiously, faithearly detection in women under the age of 40. A portion of fully, hard. You know, running five miles three times a week. the proceeds of TGIN’s Green Tea Super Moist Leave-in Cardio fiend, going to Shred 451, but doing all this stuff Conditioner goes to breast cancer research and early detecand [being] very driven, very ambition education and outreach services. tious,” she recalls over a Zoom chat last More than $10,000 in the past year “I tell myself everyday, I’m October. Donaldson also balanced a has been donated to the Metropolitan safe. I’m divinely protected. Breast Cancer Task Force of Chicago, full-time job as an attorney with TGIN. Reflecting on that time, Donaldson a not-for-profit organization based in I’m surrounded by a family of Chicago thinks that she was probably under that provides free mammomajor stress, but didn’t know what it angels, ancestors and spiritual grams and breast navigation services looked like or how to manage it. guides that are leading me into to un- and under- insured women.

“If you feel a little off, you’re more Most recently, the tgin Foundation the right direction.” willing to say, ‘Let me just sit down held a fundraiser to support the renand take it easy,’” she says. “Maybe ovation of a breast oncology waiting 10 years ago, I wouldn’t have done that. I would have sat room to make it more open and inviting to visitors. down and tried to work and bang out what I needed to get And last year, Donaldson released “This Is Only a Test,” a done, try to work through things instead of just honoring memoir about her life. From growing up in inner city Detroit to what my body was trying to tell me.” graduating from Harvard (twice!) and founding her own busi During her initial treatment, Donaldson underwent ness, Donaldson’s life was already memorable. Now, as a twochemotherapy, a lumpectomy and 33 rounds of radiation. time cancer warrior, she proves her story of resilience, strength, She also froze her eggs. “I was very submissive because spirituality and grace is as relatable as it is empowering. it was stage II,” she recalls. “I was kind of on this cancer “It’s just God,” she says. “I feel like he put me in a conveyor belt. I went with what they told me and I didn’t situation so he could just show people that miracles do do anything non-traditional. But I did reflect on my life happen. Because I am a miracle. I’m literally a walking and try to figure out why did I get here.” miracle. I’m a total miracle and I feel like I’m a living tes Unfortunately, after beating her first diagnosis, Donaldson timony of the power of your thoughts and faith.” was diagnosed with a more advanced stage of breast cancer in In the present, Donaldson has learned to let go of the 2018 at age 39. The experience was much more difficult than things that don’t serve her. “I think there’s a sense of guilt she could have ever imagined. “I thought I was going to die,” sometimes in our bodies from holding on to things,” she she says. “I thought my life was over. I thought it was the end.” says. Many of us hold on to our emotions and can’t forgive Those types of thoughts crippled her mind for the others, or ourselves. Like many warriors, during her first first two years of her new diagnosis, but, surprisingly, diagnosis, Donaldson blamed herself.

Donaldson credits the onset of the COVID-19 pandemic “You’re always trying to go back over your life and as a gamechanger in altering her mindset. figure out why, at 36, did I go wrong? And I’m a lawyer, so “COVID hit, life hit and one day, something just went off.

I’m constantly replaying that reel, trying to look for data, And it’s like, ‘You’re not going to die,’” remembers Donaldson. look for evidence, look for anecdotes,” Donaldson adds.

She credits her spirituality and faith in God, something that “But you have to learn to let go of whatever would have, wasn’t as strong as it is now prior to her first diagnosis. “I felt could have, should have caused this and just learn not only like he was telling me, ‘This illness is not going to result in your to be present, but to forgive whatever was in the past.” death,’” she says. Suddenly, she began to receive signs repeat Now, Donaldson accepts and honors her body, whatever edly, from butterflies to music to her grandmother’s favorite and however it chooses to show up, every day. “I’m trying to candy. “I tell myself everyday, I’m safe. I’m divinely protected. get better at that,” she says. “And that’s my ultimate goal.”

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Cancer Wellness

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Cancer Wellness

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Cancer might be tough. But we are tougher.

We are The Leukemia & Lymphoma Society.

We are leaders in advancing breakthroughs in immunotherapy, genomics and personalized medicine. This research saves lives.

Help us save more lives.

Donate now at www.LLS.org

going flat WRITTEN AND PHOTOGRAPHED

BY SARAH BELL

In our new portrait series, we capture the beauty of the New Cancer Community.

A

Photography by Sarah Bell

ccording to data from the 2014 American College of Surgeons National Surgical Quality Improvement Program, 46 percent of people undergoing a mastectomy for invasive breast cancer opted out of reconstruction surgery. This choice is referred to as “going flat” or “living flat.” Post-treatment stigma may make many women desire implants, but going flat is a valid option and lessens the chances of further complications down the road. “Aesthetic flat closure,” is the post-mastectomy reconstruction of the chest wall. The women photographed for this project explained how it has been a challenge to learn to make peace and love their new bodies. For some, posing for this project has been part of that process.

LAURA ZENKER was diagnosed in 2018, and though she lives with pain, she is grateful to be alive. “Your breasts don’t make you feminine,” she says. “I am a woman, I will always be a woman.”

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“I am only a couple years out from treatment so I am still making peace with my body,” admits RHONDA CAUDILL, who was diagnosed in 2017. “I need to do more to regain my self-esteem and feel free to live in my body again, as is.”

After her diagnosis and surgery, KATHY CONWAY started Complete Shaping for a more comfortable way to wear lightweight prosthetics after going flat.

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Cancer Wellness

GINGER EUBANK was diagnosed in 2015 and is halfway through a tattoo chest piece she is getting to honor her scars.

KELLY CRAMER discovered she had breast cancer when breastfeeding her baby in 2016. “I want women to stick up for themselves more,” she says. “It is a matter of life and death.”

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Diagnosed in 2018, AMANDA BARRETT wants to normalize living flat. Her doctor, Dr. Karen Tisinai at Union Hospital, only performs mastectomies, no reconstructions.

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Cancer Wellness

Complementary Medicine

41 FINDING A NEW APPROACH 44 REPLENISHING YOUR SELF 45 MILKING A MYTH

Cancer Wellness

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Finding A New Approach

As integrative medicine becomes increasingly popular, practitioners like Dr. Shelly Smekens at Raden Wellness are ensuring patients encounter safe and smart whole-person healing.

BY TAYLOR NOVAK

A

lleviating painful symptoms from cancer treatment While conventional medicine is becoming more open can be as important as finding a cure for a disease. This to the inclusion of integrative medicine, Smekens notes that is where integrative medicine truly shines. Though there still exists hesitancy or objection by some traditional some less-regulated integrative medicine practices doctors. “I think perhaps a big misunderstanding from can indeed be harmful (as we’ve explored in past issues), there some of the oncology side is that people think a patient will are many documented success stories of more popular methods. come to see me and I’ll just give the green light on X, Y and According to Dr. Michelle “Shelly” Smekens, a naturopathic Z,” Smekens says. “That’s not really the case.” practitioner, the important distinction between success and A lot of what Smekens focuses on in her position at failure is a patient’s expectations of integrative medicine.

Radenis aiding patients in lessening or eliminating side “If there are conventional options, I always want them to do effects from illnesses or treatment. She also seeks ways that,” says Smekens. Rather than expecting integrative medicine patients can naturally improve their health, especially if to be a cure-all for their affliction, patients should instead view appropriate conventional methods have proven to be futile. it as a complementary option alongside conventional treatment.

Take immunotherapy as an example. In cancer treatMost importantly, they should engage in integrative medicine in ment, the biological therapy is used to strengthen a warrior’s a safe environment under the supervision of a professional. immune system to better fight cancer cells. However, recent Integrative medicine, defined by its absence in convenresearch published in the journal Nature Communications tional Western medicine, was once referred to as “alternahas highlighted that immunotherapy, while a promising tive” or “new age” medicine and heralded as the unworthy advancement in cancer treatment, does not work for everyunderdog to traditional approaches. Toward the end of the one—especially patients who are young and female. “People 20th century, integrative medicine grew in popularity in do have expectations hearing about [immunotherapy] in the the U.S. through increased involvement in practices such media and put all their eggs in one basket,” says Smekens. as yoga, acupuncture, Reiki and chiropractic medicine.

“While results have been promising for some cancer types, Today, integrative medicine is increasingly there are examples of it being lackluster.” accepted and utilized alongside conventional “You never know what Raden prides itself on offering medical approaches. A 2015 analysis in the patients a personalized approach to their motivates people and journal Advances in Medical Education and care. Smekens accomplishes this through I think we all need to analyzing what conventional methods Practice of 130 U.S. medical schools shows that half (50.8 percent) are now offering CAM (com- be a little kinder and have and have not worked for individuals plementary and alternative medicine) courses and finding ways to compensate where more sensitive.” that delve into topics like herbology, spirituality, traditional medicine may be lacking for a acupuncture and traditional medicine. particular individual.

Smekens practices at Cancer Treatment Centers of “Conventional answers can be limited and don’t work America and northern Illinois-based Raden Wellness, the for all people,” says Smekens. “I would say there are some latter of which is a medical center that takes the holistic, or side effects where natural medicine has options that poten“whole person,” approach when it comes to treating patients. tially could be safer or has more options.” In the case of In her role as a naturopathic physician at Raden, Smekens ineffective immunotherapy, Smekens augments treatment works alongside mental health specialists, a nutritionist, an by returning to basic nutrition and nutraceuticals—prodosteopathic physician and integrative physicians. ucts derived from food sources with extra health benefits

Smekens had the privilege of becoming familiar in addition to the existing nutritional value—that increase with a holistic approach to health care through her aunt, immune health and support for patients. a chiropractor who owned a practice that also employed According to a 2014 study in the journal Oncology medical practitioners, nutritionists and people trained in Research and Treatment, 77 percent of 170 cancer patients acupuncture. “She was very forward-thinking in saying, were using integrative medicine in addition to their con‘Look, these practitioners are under one roof and collaboventional treatment. “And even if their oncologist has a rating on patient care,’” says Smekens. negative viewpoint or is dismissive [of integrative medicine],

Positive feedback from patients at her aunt’s pracpeople tend to go and do it anyway,” recounts Smekens, tice revealed a gap that existed within health care. who says she spends much of her time educating patients.

Collaborative, multidisciplinary efforts in one practice By going through an established center like Raden, those were seemingly helping fill the void. “The positive feedseeking additional methods for their illnesses or pain can be back from community members said that this was somerest assured that they’re receiving quality care and not going thing that was needed and was really helping them in against their oncologist’s orders. Just be sure to keep an open their healing or their health,” Smekens says. channel of communication with your oncologist should you Smekens went on to receive a doctorate in naturobecome interested in utilizing integrative medicine. pathic medicine at Southwest College of Naturopathic

“A lot of what I’m doing is making sure whatever Medicine in Arizona, taking comprehensive courses [patients are] doing within my realm is safe and compatin both conventional and integrative medicine, from ible with the conventional treatments,” says Smekens. biochemistry to botanical medicine. During rotations, “You never know what motivates people and I think we all Smekens encountered oncology patients and became need to be a little kinder and more sensitive.” interested in their care. As a certified naturopathic physician who is board certified in naturopathic oncology, she now supports people through all stages of cancer: prevenTo learn more about Dr. Shelly Smekens, visit drsmekens.com. More tion, active treatment and survivorship. information on Raden Wellness is available at radenwellness.com.

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V O G E L Z A N G L AW

replenishing your self Self-care is not a reward for living life well — it’s a staple.

BY ELIZABETH TUCKWELL

I

recently spoke with a friend of mine, Lisa, who had been a professional caregiver for most of her working life. She was naturally drawn to the work from a young age as it aligned with her ability to lead, care and nurture others. While she found the work rewarding, she also shared cautionary tales about her own mental health during her time as a care worker.

“I would come home from 10-12 hours of caregiving and feel like a zombie,” Lisa said. “I tried to fill the void of my own self-care with quick fixes like alcohol or Netflix binges, but ultimately, I was learning hard and fast that I needed to create something long-term to sustain myself. I had to include myself within my own caregiving.”

She found ways to do just that. She woke up earlier to begin a small self-care routine of hot showers, yoga and 15 minutes of reading before work. “This made an incredible difference in my life,” said Lisa. “I began to walk taller and feel stronger and more confident. I felt like I was honoring myself. I felt like I had value and my own life began to have real meaning again.”

This simple decision to cater to her own wellbeing elevated other areas of her life. “All of my life started to feel better when I made these changes. I started to care more about what I ate and how I looked. Everything began to fall into place,” she said.

Lisa had found herself again and loved it.

This resonated with me. Although I am not a professional care worker, I am a parent and am in charge of someone else’s care. I am guilty of negating my own needs in the process of caring for others.

There is a wonderful anonymous quote that states, “[...] and if I asked you to name all the things that you love, how long would it take for you to name yourself?” I would also add, “If we named all the things we care for, how long would it take to name ourselves?”

Self-care is not a reward—it is an essential component of living well. Now more than ever, we need to reprioritize our caregiving to include ourselves. We need to stop deflecting our needs by excessively caring for others by redesigning the ebb and flow of our caregiving.

First, identify any personal barriers that may be thwarting your own self-care. One common barrier is the misconception that putting our needs first (or into play at all) is selfish. This martyrdom is an antiquated illusion that only breeds exhaustion, resentment and low self-value. There is no glory in being a martyr, only a slow withering of our spirit. Sacrificing one’s needs to gain recognition for service is an illusion.

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We need role models who prioritize their self-care needs. We are hungry for images of people replenishing their batteries, honoring their health and loving themselves. The more we see this example in the world, the more this paradigm shift becomes the new normal.

SO WHERE TO BEGIN? Nourish your self-care with a simple commitment to value yourself. Commit to respecting your personal needs and permit yourself to move toward giving yourself what you need. Embody a lifestyle that incorporates self-care in all areas: mind, body and spirit.

Begin with the concept of replenishment then move on to a consistent practice that prioritizes inner harmony and allows for daily care.

Think about the things you love doing and put dates on a calendar to do them. Consider the sustainability of your body and treat this one-time gift with total care.

The food you choose should fuel your body, not fool your body. Allow your body to move. Movement frees stuck energy within the body and releases endorphins. Exercise grounds you and allows you to feel good.

Feeling good. Feeling loved. Feeling valued. These are some of the aspects that go hand in hand with caregiving.

The most important decision you can make today is to give all of these to yourself. Show yourself that you matter. The world is waiting for you to be the example it needs to see.

REPLENISHMENT TOOLS CAN INCLUDE: •

Spending time alone. Allow yourself time to step away from the world and unplug from responsibilities.

This includes saying no to requests for your time and attention.

• Listening to music that you love • Journaling to let go at the end of the day or recognize all that you accomplished during the day

Milking A Myth

Early research suggests the potential of a human breast milk protein for treating tumor cells—in a lab setting. Yet, some adults are traversing the breast milk online marketplace, betting on consumption as a cure.

BY BRITT JULIOUS

I

n an effort to combat or prevent many forms of cancer, people have turned to a variety of unusual or alternative forms of treatment. Most recently, according to an Aug. 13, 2020 article in the New York Post, that includes the consumption of human breast milk.

Showcased in the Netflix docuseries “(Un)well,” adult breast milk drinkers routinely purchase the product through unreliable resources like Facebook, Craigslist and Reddit. And while some drinkers tout anecdotal evidence of its benefits, some of the procured milk can also be potentially harmful to consumers. According to a study from the Nationwide Children’s Hospital, out of 101 samples of breast milk purchased online, 75 percent contained harmful pathogens and 10 percent were cut with cow’s milk or baby formula.

But the connection between human breast milk and cancer is not as far-fetched as it seems. In 1995, a research group in Lund, Sweden found that a component of human breast milk kills tumor cells without harming healthy cells.

And in 2019, researchers at HAMLET Pharma released the results of a small study (20 participants)—the first of its kind—that showed this component, only found in breast milk, can break tumors into tiny fragments that certain cancer patients were able to pass through their urine.

This occurs when alpha-lactalbumin, the most common protein in human breast milk, is bound to oleic acid. Scientists have nicknamed this biological complex HAMLET, or Human Alpha-lactalbumin Made Lethal.

According to HAMLET Pharma, HAMLET is a “tumorcidal protein-lipid complex, formed by two GRAS (generally regarded as safe) molecules present in human milk.”

Even better, the compound has been shown to break down tumors without harming healthy cells.

The Phase I/II trial studied the safety and efficacy of Alpha1H, which was infused in patients with bladder cancer in six rounds. Significant differences were found among patients treated with Alpha1H and those on the placebo. According to HAMLET Pharma, “Alpha1H triggered significant shedding of cells in all tumor patients who received this treatment (p<0.0001). In addition, Alpha1H triggered the excretion of whole tumor fragments into the urine (p<0.0001), illustrating the potent effect.”

While this news is promising, this research is only in its initial stages and more participants will need to be studied in future phases. “We need more evidence but hopefully this could be the gentle chemotherapy of the future,” says Mats Persson, CEO of Hamlet Pharma. Until then, most researchers advise the curious to hold off on consuming breast milk as an adult and utilize more traditional methods for prevention and treatment of cancer.

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entertainment

48 COMING UP ROSES 53 THE THRIVER 55 THE BIGGER PICTURE 56 AGANIST ALL ODDS 58 STORIES OF HOPE

g n i m o C oses R p U Cancer has had a presence in Allyn Rose’s life for as long as she can remember. After witnessing her mother, grandmother and great aunt battle breast cancer, the model and former Miss USA underwent a preventative mastectomy. Now, she’s empowering previvors everywhere.

WRITTEN BY BRITT JULIOUS PHOTOGRAPHY BY PETER MÜLLER

Photo courtesy of TBD

U

nlike most young people, cancer has always been a part of Allyn Rose’s vocabulary. Rose—the beauty pageant contestant turned motivational speaker, social media influencer and nonprofit founder—witnessed many family members, including her own mother, battle the disease. That is why, when Rose made the decision to undergo a preventative double mastectomy in her 20s, she was not afraid to share her story with the country and, ultimately, the world. “I was very fortunate that I had a mom that was really very resilient and strong and said cancer was a part of my life, but it didn’t define my existence,” says Rose.

From an early age, Rose says cancer impacted her family. Although Rose did not test positive for the now-commonly known BRCA gene mutation, she did learn that she is a carrier of a different gene mutation.

“It’s an X-linked chromosomal disease, so only males are affected, but females are carriers. And I had lost three uncles to this disease,” she recalls in a conversation over Zoom from Frankfurt, Germany. “So my mother was very proactive in talking to me about how my genes could impact my future fertility or impact life. At the time, there were some studies saying [...] the gene that I carry may have a link to women being diagnosed with breast cancer. So there was always this kind of idea [that] we’ve got faulty genes somewhere.”

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Rose’s mother was diagnosed with stage III breast supportive, some were upset by the news. People sent her cancer at age 27. She underwent a unilateral mastectomy father hate mail and a meme about her choice went viral. and wore a prosthesis. “I remember she said, ‘This is a “I’m really grateful I have very good friends, a supportbump in the road and I’m over it and on to the next thing,’” ive family. And I think I have thick skin too,” Rose says.

Rose recalls. The next things in her mother’s life included “Growing up, losing so many family members, you have to having children and starting her own company. be a little bit resilient, so I was able to push through that Unfortunately, her mother also neglected other areas negativity and decide for myself that it was the right choice.” of her life, including yearly screenings. “Her brother had However, getting the surgery was a lot harder than been diagnosed with small cell lung cancer and she said, she expected. “I had moments of feeling like, ‘What am I ‘OK, this is my wake up call. I’m going to get that pregetting myself into? Is this really the right choice?’” recalls ventative mastectomy,’” Rose says. But while undergoing Rose. “But there was always something in the back of my preparation for the mastectomy, the doctors discovered mind saying you’re going to be okay. You’ve done your due her breast cancer had returned. Rose was only 12 years diligence. You’ve researched this fully.” Rose ultimately old. “To really be moving into being a young adult, develunderwent an under-the-muscle reconstruction with a oping my womanhood, with a mom battling breast cancer two-step procedure, including expanders, for an exchange was a different experience than most people,” Rose says. surgery. Minor complications delayed the process and Rose Rose’s mother eventually lost her battle to breast cancer. says it ultimately took her a year after her exchange to not “I knew that I was going to have to do something if I wanted think about it every day. “You know, my life wasn’t going to to preserve my life,” Rose says. Her father was very adamant be permanently marred from the surgery,” she says. about being proactive. At age 18, her father brought up the And while it has been many years since Rose underidea of having a preventative mastectomy. It is recommended went and recovered from her mastectomy, she continthat women with a genetic tie to breast ues to work as an advocate for the cancer undergo a preventative mas- “Growing up, losing so many breast cancer community. Prior to tectomy 10 years prior to their family COVID-19, Rose regularly traveled family members, you have to around the globe, giving motivational member’s initial diagnosis.

“He begged my mom for years. be a little bit resilient, so I was speeches and appearing in events like ‘Remove the other breast. It’s a ticking AnaOno’s 2020 NYFW show. time bomb. I don’t care what you look able to push through that neg- “This is something I certainly never like. I want you to be around for the ativity and decide for myself envisioned for my life,” says Rose, who next 50 years,’” recalls Rose. wanted to be a constitutional attorney that it was the right choice.” and become the first female gover Despite knowing her mother’s story, Rose says it was still difficult for nor of Maryland. She had “previvor’s her to make the decision to get a preventative mastectomy, guilt” for a long time. “I saw all these women out there too. As a late bloomer, she had just gotten her breasts. “I was who had battled cancer and had a mastectomy and why the offbeat kid in high school. You know, I played guitar in was my voice important? Why wasn’t it them?” she begins. a punk rock band. Was never the pretty girl,” she says. In “Until there were other people saying, ‘I wouldn’t have had college, she began embracing her femininity and even joined this surgery had I not seen someone who was able to move a sorority. “So finally just becoming a woman, it was a hard on with their life.’” thing to have to fathom that I would have to give that up.

Rose takes her role as a supporter so seriously that she And give it up relatively soon.” recently launched a new nonprofit, The Previvor, which She later found a breast cancer charity pageant and aims to educate people about their options for optimal she considered it her “last hurrah.” Surprisingly, Rose breast health. “Being public in this space, I constantly had won and it changed the trajectory of her life. She later people reaching out to me about what type of surgery did entered the Miss Maryland USA pageant in 2011 and won [I] have, what kind of reconstruction, what options were that too. She went on to compete in Miss USA in 2011 and, out there,” says Rose. “I quickly realized there was no one after winning Miss District of Columbia, competed in the comprehensive place that women could go to to learn about 2013 Miss America pageant. their options. And there are options about everything.”

After sharing her decision to undergo a double mastectomy Enter The Previvor, a digital, accessible platform that with her friends, she also decided to include it—along with prequickly and seamlessly provides information so people ventative health care—as part of her Miss America platform. can make informed decisions and advocate for themselves.

“For me, it was a really unique experience because “I really want to be able to continue to take the voice of having a charitable platform and being able to talk about other women in this community to create a more commy mom’s life and have her experience not be in vain— prehensive platform, so that women just feel positive and have her life and the loss of her life inspire other people to empowered going into this choice,” Rose says. “I think the take charge in their health care—was honestly therapy for next chapter is moving away from my story and having it me,” recalls Rose. Her story soon garnered international be the collective our story.” attention, making the cover of People magazine. She later appeared on television shows like “Good Morning America” and “Today” and on networks including CNN. “People were kind of blown away that a young person would voluntarily remove their breasts for a cancer that didn’t exist,” she says. And while most people were To learn more about The Previvor, visit theprevivor.org.

Cancer Wellness

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the thriver

PATRICK YOUNG AS TOLD TO BRITT JULIOUS

When you get the diagnosis that you have any type of cancer, you’re a little taken aback. I got through it. It didn’t take me as long as some people.

There were a couple of different things that led to my diagnosis. First off, I chewed tobacco when I was in high school. That did not help. When I was doing it, I thought I was untouchable. ‘That’s not going to happen to me’—but eventually it did. It didn’t happen real soon. It took many years, but it eventually caught up. And being a tradesman, working outside, the sun, mixing the two together didn’t help my situation in any way, shape or form.

It looked like a blister on my lip. It was just a small thing. It would get bigger some days and it would get smaller. I didn’t pay much [attention] to it. After months of it not going anywhere, my son and my mom told me that ‘You really need to go get that looked at.’ I did and they found it to be cancerous. I had squamous cell carcinoma.

I had what was called a Mohs procedure. It was a long day. I went in, my procedure started at 7:30 in the morning. They cut out a portion of my lip and then they biopsied it. And there was more cancer. They kept cutting until the cancer was gone. This procedure went on for about six hours. Finally, at about 5:00 in the evening, the doctor told me that she was not going to be able to salvage my bottom lip, that I would have to see a plastic surgeon to rebuild my lip. She had to cut out more than even she anticipated.

I was the plastic surgeon’s last consultation for the day and he looked at it. He gave me some hope because he goes, ‘You know, it’s not as bad as you think it is.’ He rearranged his schedule to get me in at 6:30 that following morning and because it was still fresh. He re-lanced the lip and rebuilt it. Kudos to him. He did a good job because if you were to see me today, you would never know that three quarters of my bottom lip was removed two and a half years ago.

Photo by Sarah Bell

I guess normality is how you define it.

To hear more from Patrick, visit cancerwellness.com

Right now, I have a normal life, other than I don’t have feelings in my bottom lip. For the most part, my life is back to normal. I still eat, drink, do everything. I’m still able to speak, but you have to give me a little distance because your saliva tends to build on your bottom lip. Sometimes I spit when I talk, let’s put it that way. I guess normality is how you define it.

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The Bigger Picture

From L to R: Joni Goldstein, Nancy Rosen

Art speaks louder than words in Twist Out Cancer’s Brushes with Cancer program that utilizes artists to paint a picture of the relationship individuals have with cancer.

BY ALLISON STERN

Photo by Sarah Bell

“I

have no relationship with cancer, none. We are not friends, no,” jokes Joni Goldstein, dance instructor and two-time cancer survivor. She was first diagnosed with breast cancer in 2004 at the age of 57, and again last year at the age of 71.

Her niece, Joelle Bilow, recommended Goldstein participate in Twist Out Cancer’s 2020 Brushes with Cancer program. Twist Out Cancer is a nonprofit that provides support and healing to those affected by cancer through its creative arts programming. The charity’s Brushes with Cancer program matches an artist with a cancer previvor, fighter, survivor or caregiver as “artistic inspiration.”

As the COVID-19 pandemic has transitioned almost all charity events to an online venue, Twist Out Cancer swiftly adjusted their program. For the eighth annual event, which took place November 14, virtual guests enjoyed exclusive access to a virtual gallery, online auction and celebration.

Through the program, the inspiration meets with the artist to discuss their relationship to cancer. The artist then has a few months to create a piece of artwork that illustrates the experience of the person affected by cancer.

The program culminates at a gala-style celebration where the artwork is revealed to the inspirations for the first time and then auctioned off to benefit the mission and work of the charity.

For Twist Out Cancer’s Brushes with Cancer program in Chicago, Goldstein was paired with artist Nancy Rosen.

Goldstein adores Rosen, gushing, “I got paired up with my new best friend, Nancy, who I love and adore and we have so much fun together.” Rosen is a Chicago painter who has shown her work in galleries and exhibitions across the country. Her work has also appeared in movies and on television shows, most notably as Lily Tomlin’s paintings on the Netflix series “Grace and Frankie.”

Rosen revealed a breathtaking painting of Goldstein posing in a fierce ballet fourth position. The bright red color Rosen used in Goldstein’s clothing and the strength and grace vibrating through her arms perfectly depict her spirit. With one arm above her head, one arm out in front of her, and an optimistic smirk on her face, Rosen’s painting encapsulates the complexity of everything Goldstein has faced through and beyond her cancer.

The novel coronavirus has recently created barriers for socialization, especially for those affected by cancer, but Twist Out Cancer’s Brushes with Cancer program creates an opportunity for cancer previvors, fighters, survivors and supporters to come together in a new and beautiful way. Goldstein and Rosen are a true testament to that.

Brushes with Cancer gifted Joni and Nancy with an undeniable bond of friendship that will last long beyond their experience with the program.

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Against All Odds She may be a world-renowned triathlete champion, but Siri Lindley is out to prove that you donâ&#x20AC;&#x2122;t have to be an athlete to overcome what seems impossibleâ&#x20AC;&#x201D;including a diagnosis.

BY TAYLOR NOVAK 56

Cancer Wellness

Photo courtesy of Siri Lindley

From L to R: Siri Lindley and Rebekah Keat

S

i ri Lindley has defied the odds more than once in decision then that everything she did going forward would her life. focus solely on healing, surviving and thriving.

Most recently, the former championed triathlete, Part of that survival was fueled by Lindley’s passion now a coach and speaker, fought through an unexfor rescuing horses. She and her wife own a 7-acre ranch, pected acute myeloid leukemia diagnosis. But she credits Believe Ranch and Rescue, that’s nestled in the foothills overcoming the unthinkable with her induction into the of the Colorado Rockies, where they’ve committed to resworld of professional triathlons years ago. cuing horses from auction, feedlots, slaughter and neglect.

As a shy and reserved kid often confronting self-doubt, More than 100 horses have been rescued, rehabilitated and Lindley found sports to be a refuge from anxiety. After rehomed in the past three years. Lindley and Keat have also playing field hockey and lacrosse for several years, she discovspearheaded Horses in Our Hands, a national campaign ered triathlons at 24 years old. Going from a team environto end horse slaughter in the U.S. Having what felt like a ment to a sport where she could only rely on herself felt like greater purpose helped Lindley get through her treatment. the natural transition to fully face any residual insecurities.

“It was keeping me going. Because when you’re going “Triathlons just seemed like the perfect opportunity to through something like cancer, and especially when really find me and prove to myself what I was capable of on my you’re in the hospital and you’re doing nothing, it made own,” says Lindley. “When you play on a team, then you lose me feel like I still was accomplishing something,” Lindley as a team, and it’s incredible. But at this point, to discover my says. “It gave me purpose, and it made me feel like I was own strengths and my own courage and believe in myself and still able to have a huge impact.” ultimately a love for myself is what I was really after.”

Lindley has experienced the healing power of

Lindley hadn’t competed in a triathlon before—she horses firsthand and she wants to have the chance to pass couldn’t even swim all that well. She came in dead last in that special connection onto others. Believe Ranch and her first race and while she says she completely humiliated Rescue has started offering equine therapy programs herself in the process, she also had never felt more alive. for cancer warriors, where a mental health professional Even when failing, the sport invigorated Lindley to such a supervises the grooming, feeding or leading of a horse to degree that she would stop at nothing to become one of the promote physical and mental wellbeing. Lindley believes best professional triathletes in the world. that when you pair animals and humans “I had such a deep ‘why’ behind it,” she says together, something powerful happens.

“I said, ‘I am of the purpose driving her to become proficient “Their presence, their energy is incrediin the sport. “That ‘why’ was connected to truly physically alive. bly calming,” Lindley says of the horses on the finding love and respect and worthiness for “They helped me so much to overcome And I am going ranch. myself, so I literally immersed myself.” the anxiety and the fear that comes along with to thrive.’”

The immersion paid off. Lindley’s perdiagnosis, treatment and survivorship. I’m so sistence as a triathlete, from training while deeply grateful for that.” working 60-hour weeks to moving to Australia, led her Lindley is now cancer free, and she credits that status to rack up numerous world championship titles, includto both her horses and her mindset. As a motivational ing back-to-back wins at the ITU Triathlon World Cup in speaker, Lindley hopes her message of reframing situa2001 and 2002. She was officially ranked as the top female tions can help others persevere when the odds seemed ITU triathlete in the world. stacked against them—whether they’re training for a race

“It was such an incredible journey,” Lindley says. or fighting cancer.

“And I realize now that it was that journey that totally pre “In triathlon, I truly had to back myself and believe pared me for my most recent journey with leukemia.” in myself because all the evidence around me was saying, After her successful stint in triathlons, Lindley chose ‘You’re not good at this, and you should do something to retire from the sport and began coaching in 2003. else,’” says Lindley. “Getting back up, dusting myself off However, her intense training for her own races seemed and not giving up ultimately resulted in me achieving my to catch up with her in the form of a bad hip. In November dream. That has given me the belief that anything and of 2019, Lindley had a window of availability in her everything is possible. I had that proof. And we all have busy schedule when she would be able to undergo a hip [that proof] in our lives, where we have overcome somereplacement. She went in for standard preoperative tests thing that we never thought we could. It’s so important to but instead came out with something very startling—a focus on those memories rather than on the unknown.” cancer diagnosis.

Acute myeloid leukemia (AML) affects the bones and blood and can progress rapidly without treatment. Lindley was terrified and devastated when she received the call

from her oncologist. But, as the doctor was explaining the diagnosis, Lindley looked over to her wife, former triathlete Rebekah Keat, who was sitting next to her with tears in her eyes. A wave of love washed over Lindley and that’s when she knew she was going to give cancer her best fight.

“It was literally in that moment, regardless of a horTo keep up with Siri Lindley, visit sirilindley.com or follow her rible thing that my doctor was saying that I had to be on Instagram @sirilindley. To find out how you can help horses dealing with, that I said, ‘I am physically alive. And I am alongside Lindley and Keat, check out believeranchandrescue. going to thrive,’” Lindley recalls. She says she made the org and horsesinourhands.org.

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Stories of Hope with Whitney Reynolds

In her new cW column, television host Whitney Reynolds spotlights an uplifting story from a notable person in the cancer community.

BY WHITNEY REYNOLDS

H

i! I’m Whitney Reynolds, host of “The Whitney Reynolds Show.”

Our show is on a mission to create positive change. I believe there is hope in the struggle and inspiration can be found in the valley. I’m a huge fan of the comeback. Our show’s motto is: “Your Story Matters.” And now, we’ve taken our mission to print, right here in the pages of cW. Meet Sadie Keller, a 13 year old from Texas who I had the honor of interviewing on my show this season. Her cancer journey is bold, brave and reminds us all that you can move mountains at any age.

HOW WOULD YOU DESCRIBE YOUR LIFE’S JOURNEY? When I was seven, I was diagnosed with Acute Lymphoblastic Leukemia. I was a normal kid who played soccer and did things any other normal kid did until I started getting sick. I went from being a normal kid to getting chemo every week and being in this new world of cancer. It was very scary. My experience made me realize that so many other kids are going through the same thing, and that made me want to do something for them. I finished chemo in May of 2017 and have been healthy ever since. I am 13 years old and want to fight for childhood cancer and all the kids like me. I created a foundation, the Sadie Keller Foundation, and just published my first book, “Better Angels.”

body or what chemotherapy and medicines I would get and whether those would make me sick.

WHAT ADVICE WOULD YOU HAVE FOR PARENTS WHO HAVE A CHILD WITH CANCER? My advice would be to stay strong and, as hard as it is, to stay positive. I know that is not easy to do, and my parents know how hard it is, but it helps a lot and it is so important for your mental health when going through a hard time.

Not only stay strong for yourself but stay strong for your child. Them seeing you scared can make them even more scared.

The whole family has to get through it together. They all have to be there for one another in the hard times and not.

WHAT ADVICE WOULD YOU HAVE FOR A FAMILY DEALING WITH CHILDHOOD CANCER? Be there for them. Even just checking in every once in a while. Text them and make sure everything is OK because they may need someone to talk to in that hard time. So be there for them as much as you can and let them know that you are always there.

WHAT INSPIRED YOU THE MOST ON YOUR WORST DAYS? Something that I did throughout my treatment was make treats for my nurses and doctor. I would make cookies or cupcakes and it would take my mind off of everything and make me look forward to going to treatment every week. I would always come home from the hospital and say, “What are we going to make next?” Also, seeing the nurses smile when I gave them the treats would always make me smile and feel so good inside. I would actually look WHAT WERE THE EMOTIONS forward to going to chemo each week so YOU FELT WHEN YOU HEARD that I could pass out my treats. By making THE WORD “CANCER”?

When I first heard the word ”cancer,” others happy, it in turn makes you happy.

I was terrified. I thought that you got WHEN YOU WERE COPING cancer and died like in the movies WITH FEAR, WHAT GOT YOU and I didn’t know what to expect at THROUGH THAT FEAR? all which made it even scarier. I didn’t My family helped me get through know what would happen to me or my 58

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some of the toughest times. I don’t know what I would do without them.

They would always talk me through things, make me laugh or just sit with me. They never failed to make me feel good. My mom never left my side, my dad would bring me my favorite foods since I wouldn’t eat the hospital food and my brother always tried to make me smile or laugh. When I was scared, they would talk me through it and be there every step of the way and that made me strong and feel strong.

WHAT IS LIFE LIKE FOR YOU NOW? Now I am three years off treatment and am doing good. I have a foundation called the Sadie Keller Foundation and my mission with the Sadie Keller Foundation is to put a smile on as many kids’ faces [who are] fighting cancer as possible. With the Sadie Keller Foundation we have four campaigns and each of our programs is based on our personal experiences and we know how important they are and how needed they are. I lobby in Washington D.C. and have helped pass four major bills into law to increase funding and research for childhood cancer. I recently wrote a book with my friend Congressman Michael McCaul called “Better Angels” and I wanted to write “Better Angels” to let people know that no matter what you are going through, you can get through. You just have to look for the angels in your life.

For more inspiration or to view the full interview, watch The Whitney Reynolds Show on PBS stations nationally or visit whitneyreynolds.com.

Innovations and Research 61 ON THE CUTTING EDGE 63 MAKING IT PERSONAL 64 COOL, CALM AND COLLECTED 66 LAYER BY LAYER

Visit Our Website or Call Us Navy veterans have the highest risk of developing mesothelioma in the U.S military. During World War II, the Navy used asbestos products extensively in their ships for insulation and ďŹ reprooďŹ ng. The Navy did not start equipping its sailors with breathing protection until the late 1970s. Anyone working in a shipyard before this time would have faced high levels of asbestos exposure.

Have you or a loved one been diagnosed with mesothelioma?

Visit our website www.vogelzanglaw.com or give us a call at (312) 614-1661

On the Cutting Edge Dr. Robert Taylor Ripley is embracing the complicated nature of mesothelioma by tackling the disease through innovative methods.

BY: ERIKA R. WHITEHEAD

Cancer Wellness

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“W

hat I enjoy about this field is that these procedure, Ripley removes the lung’s pleural lining (also patients’ needs are extremely challengknown as the pleura) along with all visible tumor masses. ing,” says Dr. Robert Taylor Ripley. “They The affected lung is left in place, and this is often considhave big problems and need somebody to ered a lung-sparing surgical option. The more aggressive really be an advocate for them.” surgical option, an extrapleural pneumonectomy, involves With his mind firmly set on cardiothoracic surgery, completely removing the affected lung and potentially a an unexpected change of course led Ripley to a fellowportion of the diaphragm. ship at the National Cancer Institute. More than two “With meso patients, the goal of surgery is to attain decades later, he’s now a thoracic surgeon and director of a complete macroscopic resection,” Ripley states. “[Both the Mesothelioma Treatment Center at Baylor St. Luke’s procedures] have never been compared head-to-head, but Medical Center. Ripley is also an associate professor of long term, it looks like patients do just as well with either surgery in the Division of General Thoracic Surgery at the one. Short term, the pleurectomy/decortication has a low Baylor College of Medicine. mortality, about two and half times lower.”

Ripley specializes in treating patients who have been

The latency period for mesothelioma is quite long, diagnosed with mesothelioma, lung cancer and esophageal with the average age at diagnosis being 70 years old. cancer, among other diseases. Mesothelioma is a cancer Symptoms usually do not appear until 25 to 50 years after that develops in the tissue that lines the lungs, stomach, asbestos exposure occurs. As a result of late-stage detecheart and other organs. It is caused by tion, some treatment options become asbestos exposure. Although mesoless viable. With mesothelioma being thelioma can be classified as one of one of the least-funded cancers at Despite an uphill battle, three main types—pleural, peritoneal the federal level in terms of research, and pericardial—pleural mesothelihealth care professionals like Ripley Ripley and his team are oma is most common, according to committed to taking advanfocused and optimistic about remain the Mesothelioma Applied Research tage of all treatment options to help Foundation. the future of mesothelioma patients beat the disease.

Approximately 3,000 people

Education about the dangers of research and treatment. receive a life-changing mesotheliasbestos exposure can help dispel oma diagnosis annually, making the misconceptions and misinformation. disease one of the rarest. With fewer “I think one common misconception treatment options available for mesothelioma patients in about mesothelioma is that it is a disappearing disease,” comparison to other cancers, treatment requires extenRipley mentions. “Asbestos remains relatively ubiquitous sive knowledge and a multimodal approach. It’s a chalin our environment. It’s in multiple products and multilenge Ripley embraces. “It requires a super broad mind ple construction materials.” Although the United States about any type of treatments that are available,” he says. began enforcing regulations limiting the use of asbestos “Between taking care of patients with this complicated in the 1970s, the toxic substance is still present in mildisease, multiple potential treatment options and challions of homes and public buildings predating these reglenging surgical procedures, it’s the combination of those ulations. Children, teens and adults are still exposed to things that keeps me interested in both the patient and asbestos today. the disease.”

Despite an uphill battle, Ripley and his team are

The multidisciplinary team Ripley leads at the focused and optimistic about the future of mesothelioma Mesothelioma Treatment Center at Baylor St. Luke’s research and treatment. He supports his patients as much Medical Center is world-renowned, making it a hub for as possible and encourages them to take care of themcutting-edge diagnoses, treatment and research of maligselves outside of weekly visits to his office. “We recomnant mesothelioma. The team includes a host of surgeons, mend that patients maintain physical activity and care oncologists, radiologists, pathologists and intensivists, for themselves,” Ripley advises. “Despite the diagnosis curated to help provide mesothelioma patients with the and despite treatment, continue to exercise and maintain best possible care. nutrition. Those things alone will increase well-being and When patients arrive seeking a diagnosis and treathelp to extend life.” ment, Ripley takes them through a three-phase process that includes an evaluation, a treatment plan and survivorship plan. Treatment options can include chemotherapy, radiation or extensive surgeries, or a combination of the three. With a median survival rate of just 12 months post-diagnosis, Ripley’s focus on each phase of the process is crucial to giving patients as much time as he can. “That process between having surgery, recovering from surgery, starting chemo, receiving a certain number of cycles and Dr. R. Taylor Ripley, director of the Mesothelioma Treatment then recovery from that, tends to be a six to 10-month Center at Baylor St. Luke’s Medical Center, is a nationally process,” he shares. “Patients treat this process like warrecognized, board-certified thoracic surgeon and expert in riors. They’re getting through every day, fighting for it.” mesothelioma and thoracic surgical oncology. To schedule an When surgery is an option for his patients, Ripley appointment with Dr. Ripley, please visit https://www.bcm.edu/ usually performs a pleurectomy decortication. During the or call (713) 798-1000.

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Making It Personal While an incredible advancement, immunotherapy doesn’t work for every warrior— especially young women. By aiming to tailor treatment and customize care, precision medicine is ushering in a new era of improving immuno-oncology.

BY TAYLOR NOVAK

“C

ancer isn’t just one disease, and so the way we treat it can’t be one-size-fits-all,” says Hannah Carter, Ph.D. Carter, a UC San Diego School of Medicine associate professor, shared this revelation in a press release detailing a recent study she co-authored on the inefficacy of immunotherapy on young, female oncology patients. Published in August 2020 in Nature Communications, the study looked at the genomic information of approximately 10,000 subjects with cancer. Researchers discovered that compared to older male subjects, young female subjects tend to have stronger immunoediting capabilities that MHCs, or major histocompatibility complexes, can’t address as efficiently.

MHCs are groups of genes that code for proteins on cells’ surfaces and help the immune system recognize foreign substances, like cancer. Through identifying proteins as “self” or “other,” MHCs are able to signal an appropriate immune response. Warriors who are young and female typically have strong immune systems, meaning their MHCs are fairly adept at ridding the body of cells that outwardly display toxins. In turn, however, this means that tumor cells left behind will rely more on toxins that don’t display as clearly to the immune system—i.e., immunoediting. If a tumor cell isn’t presenting strongly from the start, detecting and fighting tumors will be that much harder when using checkpoint inhibitor drugs like immunotherapy.

Immunotherapy in cancer treatment trains your immune system to better prevent tumor cells from escaping the body’s natural defenses. By strengthening cells or antibodies, the hope with immunotherapy is that your body will become more efficient in detecting and destroying cancerous cells. However, based on the study’s findings that tumor cells are adapting to already strong immune systems and going undetected, certain immunotherapies are showing to be generally ineffective for some demographics from the start. This has highlighted even more the growing realization in the cancer sphere that one form of treatment cannot be heralded as a be-all and end-all for warriors.

This conclusion has been building for some time now. A 2018 analysis in the journal Oncotarget found that among 6,700 subjects, the average response rate to immunotherapy was 19 percent. Similarly, a 2017 analysis on the challenges of cancer immunotherapy in journal Pharmacy & Therapeutics noted that “the current approach of

targeting single molecular abnormalities or cancer pathways is described by some experts as ‘reductionist.’”

With this most recent study by Carter and her team, researchers have finally started to receive some answers as to why immunotherapy is not always effective for everyone.

Moving forward, it’s imperative that research uses such biomarkers to explore customizing treatment like immunotherapy so a wider range of warriors can reap the benefits of a remarkable oncological advancement. “The more we learn about how interactions between tumors and immune systems might vary, the better positioned we are to tailor treatments to each person’s situation,” says Carter.

Dr. Ofer Sharon, CEO of biotech company OncoHost, is one of the medical professionals building upon this knowledge to better tailor treatments for individuals.

“Human beings are not identical to each other,” he says. “If we accept this, then we cannot expect that the same treatment will work the same way for all patients.”

The precision oncology company combines research and technology to work toward a goal of improving immunotherapy by identifying, characterizing and analyzing the “host” response to cancer therapies—in other words, the way our own bodies respond to treatment.

Through combining plasma-based protein analysis and bioinformatic tools (computer software or applications that organize and analyze biology components like genomic sequences), OncoHost is able to provide two important pieces of information for an oncologist: response prediction and a list of potential drugs that may block resistance-associated proteins. All that’s needed from the patient is two blood draws.

By utilizing the power of prediction, OncoHost hopes a customized plan of care for warriors will exist in the near future, as well as biomarker-guided planning for physicians and target discovery for drug development.

“Looking into the future of cancer care, we will increase the resolution and quality of tools we use today in order to differentiate between tumor subtypes, and even more importantly, between patients,” says Sharon. “Deep profiling of the tumors and the patients will enable optimal treatment selection.”

While OncoHost’s research is specifically targeting non-small cell lung cancer and melanoma in current trials, its goal of tailoring cancer care for the patient is surely an indicator of greater things on the horizon for immunotherapy developments.

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Cool, Calm & Collected Thergy, a â&#x20AC;&#x153;cancer care solutionsâ&#x20AC;? brand, has revolutionized radiation and chemotherapy treatment with the introduction of ARC, their skin-saving solution.

Photo courtesy Photos courtesyof ofThergy Thergy

BY BRITT JULIOUS

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“E

verything happens for a reason,” says definitely got through them. But when they blistered, it Charlotte Breeze, founder of Thergy. “So was because they missed a spot.” that’s how I justify all of this.”

ARC is now the only patented, FDA-approved product

Thergy brands itself as a company of its kind to effectively prevent skin damage from harmful making “cancer care solutions” for patients undergoing radiation. To call it a game changer would be an undertraditional cancer therapies, and they’re not all talk. ARC, statement. Many people often take breaks from radiation their first and most popular product, was the result of due to the harshness of the treatment. These breaks can Breeze’s own endometrial cancer diagnosis in 2006. often result in a malignant cell increase, thus increasing Breeze was initially told that her cancer was caught early. the death rate, too. With the introduction of ARC, Thergy But after endometrial surgery, she later learned her cancer is revolutionizing the cancer care industry by providing had advanced to stage IIIC. “We were totally unprepared. It an affordable and accessible product to lessen the pain of was quite a different outcome,” Breeze says about her diagradiation treatment. nosis and hysterectomy. She was initially told the surgery

“What ARC is really doing is making people feel would take up to an hour and a half, but after two hours, her better while getting better and improving [their] outcome,” husband realized something was wrong. “Both of us had a lot Breeze says. Their next project includes studying ARC as a of mental adjustments to make after that happened.” preventative product for skin cancer. “We thought, ‘If these Due to her advanced stage of cancer, Breeze was told are the same rays, why would this not stop skin cancer?’” she needed high levels of radiation and chemotherapy. “I says Breeze. Recent results from tests in the Israeli lab didn’t know anyone who had this type of cancer. We were show ARC to be a new-age skin protectant against the sun, going into it a little blind,” she recalls. Breeze was told to better than anything on the market. “It has natural active take a sitz bath every night and that ingredients, not toxic, no chemicals, her insides would never be the same. no synthetics, not metallic,” Breeze ARC is now the only pat“The news just [kept] getting worse, says. “This goes down to the cellular ented, FDA-approved but if this is what it takes, this is what level, which is why I did not burn.” it takes,” she says.

The future of Thergy also product of its kind to effec-

Luckily, Breeze’s husband was includes a new throat spray, TS200 tively prevent skin damage Oral Spray, that helps with chemofriends with an Israeli scientist doing research on skin radiation protection. from harmful radiation. To therapy and radiation side effects like After learning of her diagnosis, the canker sores, sore throats, lesions scientist recommended a product he call it a game changer would and internal radiation burns. These had been working on for protection treatment side effects can sometimes be an understatement. against the sun. He sent the cream lead to use of feeding tubes when the overnight to see what she thought. Breeze put the cream on discomfort is severe, malnutrition and cachexia in cancer the area to be radiated the night before and the morning warriors. Breeze hopes this new oral spray will help keep of every radiation treatment. Two weeks into a five-week people off of feeding tubes and keep them strong through treatment cycle, her nurse said, “I cannot believe you’re their cancer treatments. Further down the line, she hopes not turning red.” to add a skin repair product, too, as skin after radiation Breeze continued using it. After 32 sessions of radiand chemo loses collagen and is “shot for a while.” ation, Breeze’s skin only turned slightly pink and did not In the meantime, Thergy will continue to spread the burn or blister. “Nobody could believe it and they probagood news to all who need to hear it. “It’s not about the desbly thought I had a bunch of radiation that meant nothing,” tination,” Breeze says. “It really isn’t. We just keep trying she recalls. to think of new things that will help cancer patients.”

She received little response from her radiation oncologist as well, even after offering to make more and donate the product to his patients. “We felt like we really were making some kind of scientific end road,” Breeze says.

They pursued making ARC more readily accessible on their own.

There was nothing on the market quite like her cream, later named ARC, which inspired Breeze to bring it to the masses. “I said, ‘We’ve got to get this FDA approved because nobody is going to believe that this will do what it does if we don’t have some sort of certification or verification that this isn’t a bunch of hooey,’” she says. Working with Dr. Phil Beron at the University of California Los Angeles Radiation Oncology Center, more than 3000 patients were tested and studied over the course of nearly five years. “I don’t believe there was one patient who had to take a time-out or go on a feeding tube or any of that,” Breeze says. “Yes, some did get pretty darn pink but there was a significant reduction in patients requiring breaks from severe radiation dermatitis and the radiation

Layer by Layer

BY TAYLOR NOVAK

Photo courtesy of CELLINK

To give a more personal touch to cancer care, the medical industry is harnessing the power of 3D printing.

P

roduct prototypes, jewelry and car parts are just

“Using biopsies taken from oncology patients, some of the many uses for 3D printing. But the researchers at Carcinotech are printing replicated tumor technology can do a lot more than that these days. copies that enable them to test multiple treatments for From prosthetics and prescription drugs to organs efficacy prior to administering to the patient,” Gatenholm and tumors, 3D printing and bioprinting are revolutionizexplains. “While the research is still in the early phases, ing the medical sphere in stunning ways. we envision a future where every hospital has a 3D bio Traditional 3D printing has been around for a while— printer to enable personalized medicine at the point of since the 1980s, in fact. It’s an additive manufacturing care.” Doing so would hopefully remove the need for wartechnology, meaning it can construct a physical, three-diriors to go through multiple rounds of chemotherapy or mensional object using data computer-aid-design (CAD) radiation that may not even work for their cancer type and software or digital 3D models. The printer is instructed genetic makeup. to add material layer by layer to create the object. Typical It may take some time before every oncology depart3D printers can print materials like plastic, rubber and ment has a 3D bioprinter at its disposal, but in the meanmetal, which is what the general public has become more time, there are hospitals impressively utilizing 3D printfamiliar with over recent years. ing with select patients. Orthopedic surgeon Alan Blank The medical field, however, is now taking it a step at Chicago’s Rush University Medical Center is taking further with bioprinting. Building upon the additive manadvantage of 3D printing with his oncology patients in ufacturing technology of regular 3D printers, bioprinters three ways. can create living tissue, from blood vessels or bone to—

One method by Blank is the printing of 3D one day—entire organs to be used for medical training, models of a patient’s tumor in order to plan his surgical procedures and research. While the complexity of biomovements prior to the procedure. “It really lets us kind printing means it is developing at a slower pace than 3D of get our hands on the tumor before we go take it out in printing has, leaps and bounds are made real life,” he explains. every day.

“Health care can be taken Alongside printing tumors for the

Erik Gatenholm, CEO and simulation, Blank also uses 3D printing to a whole new level, co-founder of CELLINK, believes these to design and produce 3D-printed cutting advances in bioprinting can revolutionguides, which are patient-specific guides from eliminating the ize health care and change the future of the individual’s anatomy. “These kinds need for animal testing to of medicine. “I have always been fascinated of guides […] help to guide us in terms creating a much more by the possibilities 3D bioprinting would of where to make bone cuts to remove all present if the technology became widely the tumor, while keeping the patient’s personalized approach.” of available,” he says. “Health care can be normal bone as much as possible to help taken to a whole new level, from eliminating the need with the later reconstruction of that bone effect,” says for animal testing to creating a much more personalized Blank. approach.”

3D printing also assists Blank in creating custom When it comes to the accessibility of 3D bioprinting, metal implants that can fit very specifically into the space CELLINK is a biotech company that has taken the indusof a removed tumor. try by storm. In 2016, the startup commercialized the On the patient’s end, these applications will look no world’s first universal biochemical ink, the material used different compared to more traditional procedures with to create the artificial live tissue that bioprinters produce. an orthopedic surgeon. The imaging and surgery intervals Bioink consists of either natural or synthetic cells and a are the same, as is the recovery process. But behind the biopolymer gel that serves as a scaffolding for the cells to scenes, Blank is working closely with a team of software grow. Since CELLINK’s commercialization of its bioink, engineers to ensure the precision and accuracy of the 3D more than 1,800 labs in more than 60 countries have utiprints that he will be using before and during surgery. lized the product and the company’s other innovations For both patients and doctors alike, this increased like bioprinters. familiarity with 3D printing in medical settings is the “We [have] built and commercialized our own printer, ideal foundation for the inevitable spread of 3D bioprintdemocratizing access to the technology,” says Gatenholm. ing in the same spaces. A report from IDTechEx estimates “Our printers have been able to be purchased for as low the global 3D printing market will be $7 billion by 2025, as $5,000 which completely disrupted the industry. Today, with about half coming from 3D bioprinting. with our patented ‘bioink’ technology and 3D bioprinters, Companies like CELLINK are ensuring that cancer researchers and scientists at labs both big and small can research and treatment remain at the forefront of this print real human tissues for clinical research.” emerging technology, whether it’s through accessi Cancer research is one such area of focus utilizing 3D ble products or partnering with other startups like bioprinting. CELLINK recently partnered with biotech Carcinotech. “Making an impact within cancer research startup Carcinotech to advance 3D bioprinting technoland treatment has always been a priority for our company,” ogy for this exact purpose. Carcinotech produces cancer says Gatenholm. “We are big believers and advocates for research models for drug testing, cancer drug discovery collaboration and know this is the way to make real progand the study of cancer biology. Through the partnership, ress. The merging of technological fields such as robotics the companies aim to change how cancer research and and engineering with biology will give rise to a revolution treatment are approached in order to give care a more perin health care that will change how we approach human sonal touch. health and medicine.”

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Photo courtesy of TBD

fashion

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WIGGING OUT HAUTE MEETS HOSPITAL OUT WITH THE OLD A LABOR OF LOVE A STYLE OF MIND

Photos by Cheryl Gerber

Wigging Out

Cancer survivors can find comfort, style and custom coiffures in the Crescent City at Fifi Mahonyâ&#x20AC;&#x2122;s.

BY LESLIE T. SNADOWSKY

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ative New Orleanian Lisa Picone Love has worn psychologist Dr. Tracey Murry. “Bringing loved ones many wigs—on stage as an award-winning actress, along, trying on different styles and colors may put a poson parade floats during Mardi Gras and as a breast itive spin on something otherwise stressful.” cancer survivor.

For actress Love, a two-time Big Easy Entertainment “I looked like an alien,” says Love about losing her Award winner and a regular volunteer with the American crowning glory of long, thick red hair during chemotherCancer Society, one of the highlights of frequenting Fifi apy 12 years ago. “I had no hair, no eyebrows, no eyelashes.

Mahony’s is the personalized customer service. She says It was really traumatic.” it’s what makes this peruke palace a cut above the rest.

At 37, Love was diagnosed with Stage IIB estrogen “When you make an appointment, it’s all about you,” receptor positive invasive ductal carcinoma. After eight says Love. “It’s not scary or intimidating because they rounds of chemo, two surgeries and seven weeks of radimake you feel special, and they want to make you look your ation, she was on the road to recovery. As her cancer best. It’s almost like going for a spa treatment or going to receded, so did her hair, but her coiffure collection grew. the salon to get your real hair done.”

“There’s nothing attractive about having breast cancer,” At Fifi Mahony’s “wig bar,” personal stylists offer sugsays Love. “I was pumped up with steroids and I was bald. gestions and expertise and are equipped to wash, condiBut going to Fifi Mahony’s helped me feel pretty again.” tion, cut, blow dry and style your wig. Fifi Mahony’s per Located in New Orleans’ French Quarter, Fifi forms any maintenance needed to ensure a long shelf life.

Mahony’s, with its pink and lilac walls and ceilings drip This house of glamour also teases its diva and drag ping with chandeliers, offers a fanciful refuge for women queen clientele (including pop stars Miley Cyrus and fighting breast cancer. For 23 years, it has catered to a celKaty Perry) with a wide array of cosmetics and accessories ebratory city filled with eccentrics who covet eclectic cosincluding faux eyelashes, scarves, headbands, sunglasses tumes and custom wigs. Offered in kaleidoscopic hues, theand jewelry often showcased in local fashion shows and atrical themes and wild designs, wigs and headdresses at photo shoots.

Fifi Mahony’s cost an affordable $30 to $300.

“Your hair is something that defines your personality “We live in New Orleans so there’s a huge amount of cosand who you are,” says Love. “Just to be able to put on hair tuming and partying going on here,” says Marcy Hesseling, and makeup and feel like a normal person is so important co-owner of Fifi Mahony’s fashion-forward during treatment and recovery.” hair and wig salon. “But I’d say about 20

Love says she has a dozen wigs she still “When you make weaves percent of our customers are people who have into her daily and holiday wardrobe an appointment, even though her own hair grew back within a to wear wigs because of a hair loss situation, and most of that is due to chemotherapy.” it’s all about you.” year.

Fifi Mahony’s also sells a stylish selection “After chemotherapy, the majority of women, of textured trim tresses made from silky human 98 percent, will regrow their hair, and most hair. From platinum blond or red to brunette or jet black, women start to note hair growth around three months natural wigs are styled in afros or bobs, cut with bangs, after completing chemotherapy,” says Larned. Larned feathered and fringed, and layered with curls or long waves. says cold cap therapy can help prevent or decrease hair “I’m always amazed at women who are going to work and loss during chemotherapy and its success is dependent on raising children while going through cancer treatment,” says the chemotherapy drugs and dosages used, as well as the Hesseling. “People think you can put your life on hold, but patient’s hair type and condition. that’s just not the case. I see people really work hard and go “When I first started having people come in for hair through a lot and have a super positive attitude, and that’s really loss issues, the feeling of helping someone to go to work, amazing to me and all we can do is help them look better.” go through the day to look better and to feel better about “Most women receiving breast cancer chemotherapy, themselves was enormously rewarding,” says Hesseling. over 99 percent, will experience some hair loss,” says Dr. “It opened up my eyes. This is an important part of this Zoe Larned, oncologist and chair of hematology/oncology business, the most important part of this business. We do at The Gayle and Tom Benson Cancer Center at Ochsner take a lot of pride and a lot of care with people that come Medical Center in New Orleans. in for that situation.”

“I was working as a marketing and advertising pro Both Love and Hesseling are preparing for the Mardi fessional when I was going through chemo, and I wanted Gras season culminating on Tuesday, February 16, 2021. to look like a normal person,” says Love, who initially Love is planning to parade with the Krewe of Iris, and sported a synthetic pink bob at the beginning of her treatHesseling is supplying revelers with pre-Lenten cutment and then transitioned to a more natural strawberry ting-edge confections – tufts and fluffs gifted with glitter blond mane. “You think of Fifi Mahony’s as a costume wig and studded with sparkles. shop, but I wouldn’t think of going anywhere else.”

“The whole vibe at Fifi’s is uplifting and fun,” says

Ochsner Medical Center psychologist Dr. Michele Hesseling. “We’re all about experimenting with wigs.

Larzelere says women should consider purchasing a wig Most people that come in, if they’re going through chemo, prior to cancer treatment to decrease anxiety about hair chances are they’re going to lose their hair. It’s daunting. loss. “Many people conflate their hair with attractiveness They’re upset. But honestly, most people leave here feeling and/or sexuality, so its loss can be a dramatic change to more confident, for sure.” their ‘public face,’” she says.

“Some may find having fun while shopping for wigs Fifi Mahony’s is located at 934 Royal St. To learn more about the to be fulfilling,” says fellow Ochsner Medical Center store, visit fi fimahonys.com.

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haute meets hospital After his wife’s sudden illness and death, photographer Mike McGregor launched Janesi Comfort, a new line of luxury robes and blankets adding a high-end touch to the hospital experience.

BY BRITT JULIOUS

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Cancer Wellness

a no-brainer for McGregor. “It’s one of those things where if you’re just trying to think about holistic health, I want every aspect of it to push toward betterment,” McGregor says. “The thing I wanted to do is make ‘right now’ and the future as good as possible for the people that are receiving these.”

The company has also partnered with Flashes of Hope, a nonprofit that donates professional portraits to children fighting cancer. McGregor and his team have often participated in these photo sessions, which he says look “real Hollywood.”

“All these kids are given something that’s a complete distraction from their day-to-day fight to make it through tomorrow,” says McGregor. “Hundreds of different hospitals go in and create these little freeze frames celebrating who these kids are and giving them the best little memory of where they were during a real terrible time.” A portion of proceeds from every Janesi Comfort robe purchased goes straight to Flashes of Hope.

As Janesi Comfort grows in the future, McGregor hopes to expand the company’s offerings by providing more specialized items for certain medical conditions. Most recently, the company partnered with the Alzheimer’s Foundation to figure out how to best support that community with custom pieces tailored to their needs. And plans to offer a design specifically for breast surgery patients is also underway. Jo had a double mastectomy and reconstructive surgery prior to her sudden illness.

According to McGregor, a new design prototype will help with accommodation of drains, ports and other surgery-specific needs for patients during their reconstructive process.

“You’re sitting in that hospital room and you’ve got people surrounding you that are all talking in medical jargon.

I want to have that fabric that just slightly rubs against your skin and you’re like, ‘Holy cow is that nice!’” says McGregor.

“It reminds you that you’ve got a team fighting for you.”

To learn more about or purchase your own piece from Janesi Comfort, visit janesicomfort.com.

Photo courtesy of Janesi Comfort

“I

don’t have any desire to fight for the middle ground,” says Mike McGregor, photographer and founder of Janesi Comfort. “We’re really aiming for the fences here, so that is what we’ve produced so far.”

Last year, McGregor conceptualized and launched Janesi Comfort, a line of luxury robes, blankets and other items to bring a high-end touch to the hospital experience. The concept for the company was inspired by McGregor’s late wife, Jo, who passed more than a year and a half ago from a liver condition.

“My wife got sick and everything in the world kind of changed,” McGregor recalls. “I found myself in the hospital and realized, although I spent every waking day before this happened selling beautiful fashion stuff and luxury items, when I actually needed it the most, there was nothing I could actually provide to help the person that meant the most to me when they were their most vulnerable.”

McGregor recalls gowns that were rough to the touch and impersonal, a far cry from how Jo lived prior to her illness.

“We were sitting in multiple different hospitals for two months and it was the most impersonal, cold, hard thing,” McGregor says. During her illness, Jo received items from friends and family that, while thoughtful, were also impractical for the reality of her time in treatment. “I found that people who cared were sending flowers or sending chocolate and she didn’t like chocolate. Flowers don’t address your real, primal needs. There’s a couple of things that you could do in that situation that you can control and one of those is the gowns or the clothing that’s physically touching your skin.”

After Jo passed, McGregor (along with his two children) realized they needed something in their lives to help sustain her memory. Janesi Comfort was a natural step forward in securing her legacy while also helping others experience a piece of luxury while facing hospital stays and chronic illness.

“We started talking about the things she valued and those were both a little bit of that luxury, but also having things that were really well engineered and well designed,” says McGregor.

Due to his extensive background in the fashion and luxury goods worlds, McGregor said it was not difficult to find other people to help him bring his vision to life. After reaching out to his circle, McGregor found a host of pattern makers and seamstresses who had worked for designers like Prada and Louis Vuitton and were capable of making prototypes for the brand. He also partnered with a small hospital near where he lives that was willing to co-design with him.

Janesi Comfort’s products are not only soft to touch; they are also completely sustainable. The company uses the best quality fabrics that are made without toxic chemicals to “make sure everything that you do is as natural as it can be for the body,” says McGregor. The fabrics are also compostable. The only plastic they use is a recyclable plastic on their products’ snap closures for X-ray purposes.

Creating a product that was both good for the body in the present as well as good for the environment in the future was

OUT WITH THE OLD Melissa Berry of Cancer Fashionista shows us how a simple staple item can refresh your closet post-cancer treatment.

Photos by Nikoma Ortiz at En Oh Visuals

BY MELISSA BERRY

Ruffled printed sleeveless blouse by Robertson + Rodeo, $58 Black vintage handbag by Mark Cross Black suede open toe pumps, her own

MONDAY MORNING MEETING This ruffled top instantly brings a more polished look to the joggers. It’s such a simple but pretty top and can also be paired with jeans—the perfect way to update your Zoom meeting wardrobe!

I’

ve always loved fashion. It started with my Barbie doll obsession as a little girl, then progressed to fashion design classes in high school. It’s no surprise then that I became a fashion design and merchandising major at Marist College and later became a fashion and beauty publicist.

Then, breast cancer happened. Not only did it change me emotionally and physically, but it also forced me to take a fresh look at the way I dress myself. The wardrobe I once loved didn’t necessarily work for me anymore. Everyone is different. For me, my cup size changed. My breasts are actually slightly larger than before, so most of my tops and dresses just didn’t fit the same as they used to.

Bottom line? Once you’ve completed chemotherapy, surgery or both, I strongly recommend a closet overhaul.

You may be saving things for sentimental reasons. Perhaps you’re hanging onto a few items that you simply can’t part with because they make you feel so comfortable. Or maybe they remind you of a great vacation or an incredible New Year’s Eve celebration.

Before my diagnosis, I was working in NYC as a beauty and fashion publicist. I was always dressed up in trendy and sophisticated pieces and I loved it! During treatment, I found myself wearing super comfy pieces which were also stylish, but a big departure from my publicist wardrobe.

Since many of us are spending so much time at home these days, it means we don’t necessarily have to get dressed up. However, there are ways to jazz up your outfit without sacrificing style or comfort. Post-treatment, I began to work from home. I made the conscious decision to build a wardrobe that mixed sophisticated pieces with very comfortable (but chic) basics. Today, I continue to mix things up.

The truth is that you don’t have to buy tons of new pieces to give your wardrobe a big refresh. Find a few staples that you can mix and match, dress up or down— and simply have fun with!

I’m so glad I found these amazing Commando vinyl joggers from my favorite shop, Mixology in Closter, New Jersey. To me, they are the perfect blend of comfort and style. You can easily dress them up or down, and they’re definitely pretty timeless. You know how versatile they are? Very! I was able to create three really fun, stylish, comfortable and very different looks:

All clothing available at Mixology, Closter and by visiting shopmixology.com 76

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Black faux leather joggers by Commando, $148 Grey “Rosa” fur jacket by Heartloom, $218 Black “Sirena” ribbed tank by Z Supply, $39 Black suede pumps, her own

DATE NIGHT This fur jacket adds just the right amount of glamour to these vinyl joggers.

ROCKER CHIC This look is perfect for running errands on a Saturday afternoon and is a nice departure from yoga pants and a hoodie!

Black faux leather joggers by Commando, $148 "Frayed" denim jacket by Hidden, $105 Kiss â&#x20AC;&#x153;Loving Youâ&#x20AC;? tour tee by Daydreamer, $87

Inspired by a friend, created from the heart.

In April of 2007, 6 awareness bracelets, a fundraiser, along with the desire and need to help my dear friend, Sharon Winter, who had been diagnosed with Breast Cancer, has become a fundraising avenue for many non-profits, organizations and individuals. Sadly, Sharon died from cancer just 9 months later. I am honored to keep "her legacy" alive through her beautiful bracelets.

Angel of Grace provides an affordable bracelet, $15 each, of which, $5 is donated to your cause. They are designed with Swarovski Crystals, handmade beads and silver plated tubes. Each bracelet represents a specific cause which is denoted by its awareness ribbon and special bead. Tens of thousands of women wear "Sharon's" bracelet every day, creating a bond that honors a loved one. The beauty, quality and significance allows it to be treasured by all.

Angel of Grace Awareness Bracelets is committed and passionate about making a difference in our community through our fundraising efforts.

One bracelet at a time! .

A LABOR Lady Teresa Earrings, $78

Lady Teresa Cuff Bracelet, $98

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Photography Photos

by Sarah

by Sarah Bell Bell

Teresa Queen Earrings, $58 Lady Teresa Pendant Necklace, $118

OF LOVE Lady Teresa Petite Necklace, $78

Lady Teresa Square Ring, $78, Teres Queen Ring, $88

Lady Teresa Necklace, $98

Jewelry designer Bella Caetano, owner of Bellina Caetano, is committed to creating products abundant with meaning. So when a Bellina Caetano x Cancer Wellness collab for warriors, thrivers and supporters was proposed, the decision was crystal clear.

BY BRITT JULIOUS

Teresa Three Stone Ring, $128

Lady Teresa Cuff Bracelet, $98 Cancer Wellness

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“A

ll my business decisions were made from my heart and I’ve always believed that just being part of a bigger, loving community is much more valuable than the conventional way to scale a business,” says Bella Caetano, owner and designer of the jewelry line Bellina Caetano. And her latest business decision is a partnership with Cancer Wellness magazine.

Known for her elegant, gemstone-laden designs, Caetano has crafted a 10-piece collection of rings, necklaces and bracelets ($48-$138) for cancer warriors, thrivers and their supporters to bring grace and femininity into their everyday lives. Twenty percent of sales from the line will be donated to a charity voted on by Cancer Wellness readers.

For Caetano, deciding to work with Cancer Wellness stemmed from her familial roots. Caetano herself and her brand is named after her paternal grandmother. “I never met her because she died of cancer,” Caetano says. “I was the very first woman to be born in the family after she passed.”

Caetano’s collaboration with Cancer Wellness, then, was created with intention.

“I believe the world has enough products and I don’t want mine to just be one more,” she says. “I have felt in the past that it really helps me to put the product in the world if it has a meaning.” Caetano asked herself questions like why she wanted to design these pieces and what she wanted to say. “What elements could I put into this design that would speak louder than a necklace?” she asked.

One such element was the use of rose quartz. The gemstone represents universal love and is known for its ability to cultivate inner healing and a deep sense of peace.

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“I had no doubt when I chose that because I think that for us to have a break from the pain that [is] going through cancer, all we need is love,” she says. “The medications and all of that support is necessary, but at the end of the day, I think just bringing a little bit of energy that represents love is the master healer.”

Caetano calls that energy “magical hope” and believes the rose quartz can provide a sense of grounding during a time in one’s life when confusion and anxiety abound.

And although she initially created the pieces for warriors, Caetano now believes her collection can empower people on many different areas of the cancer spectrum— from warriors to thrivers to supporters. Caetano’s father’s dream was to become a professional soccer player in Paraguay, but that dream was cut short when his mother was diagnosed with cancer and he began taking care of her.

“It really made me think about the people going through it with [a warrior],” she says. “Like how strong those people have to be [...] It is a little break from what cancer is. For them to feel gracefully bold—those who have it and the one going through it with them.”

Purchase Bellina Caetano’s Cancer Wellness collection online at bellinacaetano.com or in-store (900 N. Michigan Ave., Level 5, Chicago). To vote on which charity will receive 20 percent of the proceeds from the collection, visit Cancer Wellness on Instagram at instagram.com/cancerwellmag.

A STYLE OF MIND Never underestimate the power of a good outfit—or skincare routine or diet.

Dr. Kordai DeCoteau believes style is more than just your clothing, and she’s helping warriors look their best to feel their best.

BY: ALYSSE DALESSANDRO SANTIAGO

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W

hen battling cancer, fashion may be the fur Who better to know what breast cancer patients need thest thing from your mind. Comfort may reign than someone currently going through her own treatsupreme—and rightfully so—but infusing ment? DeCoteau can relate to the women in her audience your personal style into what you wear while because she is in their shoes (or stylish slippers). undergoing treatment can create a sense of normalcy. As a

One way that DeCoteau reaches her community is cancer warrior herself, Dr. Kordai DeCoteau understands through her YouTube talk show, “Talks with Dr. D.” She calls the importance of looking your best, even when you may this show her “brain child.” After seeing so many unanswered not feel your best. DeCoteau, who goes by Dr. D for short, questions in Facebook support groups, DeCoteau decided utilizes her own cancer journey and passion for fashion to go the extra mile. The interview style format allows both as a much-needed styling and self-care resource for those DeCoteau and her guests to have a relatable conversation. living with cancer.

Past interviews have included Nicole Ndzibah, CEO of

Who is the woman responsible for helping cancer the Caftan Cuties and retail business trainer for Tommy warriors take a more holistic approach to style? DeCoteau Hilfiger. DeCoteau also virtually sat down with the woman is a New Jersey-based podiatrist with an impressive and behind Reign Body, a Black-owned company that creates lengthy resume in the medical field. After completing body butter, oils and scrubs custom for each client. DeCoteau her residency at St. Barnabas Hospital in the Bronx, notes the significance of beauty product customization for she became the hospital’s first African cancer patients or those with allergies.

American female podiatric surgical “My goal is to educate while enterStyle isn’t just about resident. taining my audience,” she says. “I hope what you put on your people can have questions that are lurking She currently works with The Heart Center of the Oranges in Essex County, on their mind answered.” body. By DeCoteau’s New Jersey. DeCoteau says she started her DeCoteau uses her cancer diagnosis definition, style is an side business, KD Styling, to help fellow to become an advocate for others in her professional women find their signature situation. She continues to shine a light attitude. It can also style. Her own cancer diagnosis changed on others serving the community all while be a way of looking the trajectory of her new business. battling cancer herself. Although she DeCoteau says she had suffered from at a cancer diagnosis doesn’t have all the answers, she does have fibroadenomas (non-cancerous masses) the perspective to know how important it since her teens, but in December 2019, through a different lens. can be to ask questions. she received a different diagnosis. She had

“Knowledge is power,” says DeCoteau. stage II breast cancer. DeCoteau says she wasn’t the only “You need to ask every question you have. You need to find one affected by the news. a support group for people going through a similar situa “Being a medical provider, my colleagues were emotion. You need family and/or friends when you don’t feel so tionally affected,” says DeCoteau. “I was blessed to have good physically and emotionally.” my OB-GYN as one of my dearest friends who came with Through her talk show and styling services, DeCoteau me and my sister, who is an attorney, to my breast oncolsays she strives to be a beacon of light to others. A doctor, ogy surgeon’s office. I had two doctors debate what was a stylist and a cancer warrior, DeCoteau is a wealth of prothe best treatment for me. My medical oncologist is a colfessional knowledge mixed with personal experience and league and her colleague is a good friend of mine. I had a a heavy dose of passion. team of smart women pushing for the best for me.”

Since her initial diagnosis last year, Dr. D has completed six rounds of TCHP (a chemotherapy treatment for early-stage breast cancers) and 21 rounds of radiation. She had a lumpectomy in May 2020 and underwent another surgery this December to remove fibroadenomas and her port catheter. Through the midst of her own treatment, DeCoteau has still found the time to be a style resource for her fellow cancer warriors.

“I was inspired to have a platform that was all things health, wellness and beauty for people affected by breast cancer, their caregivers and those who support us,” says DeCoteau. “Styling is the general term that encompasses all those things.”

Style isn’t just about what you put on your body. By DeCoteau’s definition, style is an attitude. It can also be a way of looking at a cancer diagnosis through a different lens.

“Breast cancer patients want to feel beautiful,” says DeCoteau. “Breast cancer patients want products that are environmentally-friendly, natural and safe for the body. Breast As a medical professional and active member of her sororcancer patients want clothing they can look and feel good in ity, The Alpha Kappa Alpha Sorority Inc., Dr. D’s network is while recovering at home. If you’ve had surgery, motion may rich with brilliant women in a variety of fields. To reach Dr. be a bit restricted and easy pieces need to be accessible.”

D with questions, viewers can email or send a message on Instagram or Facebook.

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resources 86 CAUGHT IN THE MIDDLE 88 BACK TO BUSINESS

HPV-related cancer types could be eradicated in the near future if all children receive a vaccine. So why are many young boys not getting the shot?

BY TAYLOR NOVAK

Caught in the Middle Millennials can feel left behind in the cancer community when receiving a diagnosis in the prime of their life, especially in comparison to their younger or older counterparts.

Stupid Cancer is changing that.

BY TAYLOR NOVAK

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“I

t’s hard enough to be a young adult or an adothat not everybody has the ability to attend a convention lescent in our world,” says Chelsea Donahue. in person and led Stupid Cancer in launching free digital “Especially for millennials and younger generawebinars and meetups in summer of 2019. tions […] there have been a lot of challenges. And

“We started doing Zoom calls before it was cool,” to add cancer to that—it can create so many incredible Donahue jokes. With the COVID-19 pandemic, the digital roadblocks for folks as they’re just starting out.” events have picked up steam and a full calendar of events

As the director of programs at nonprofit Stupid exists now, featuring anything from general open hangCancer, Donahue’s job revolves around easing those roadouts and dance parties to discussions about healthy living blocks for young adults with cancer through fostering and happy hours. community and support.

“This is just about folks talking together, so not expert Stupid Cancer was founded in 2004 by pediatric brain advice—just people connecting on their own experiences cancer warrior Matthew Zachary. Zachary was 21 years old which I think is really important and powerful,” says when he received his diagnosis in 1995, a very different Donahue. “We want to be providing excellent informalandscape than what exists today for cancer social support. tion through our webinars and at CancerCon, but we also For adolescent and young adult (AYA) cancer warriors, want to provide that space for people to just meet and talk, the 1990s offered a fragmented community at best with whether it’s about cancer or what they’re watching on TV.” no existing organizations that were specifically addressing Donahue feels fortunate that when the COVIDthe specific needs of warriors between ages 15 to 39.

19 virus came about, Stupid Cancer was already invest “It was really about bringing awareness to the fact that ing time and energy into these types of programs. The people under age 40 get cancer, they increase in engagement with these have unique needs, and those needs are online events is encouraging for the Considering 89,500 young organization, showcasing the need for not being adequately addressed,” says Donahue of Stupid Cancer’s inception. adults in the United States connection. It also has left more time Considering 89,500 young adults in are diagnosed with cancer for Stupid Cancer to focus on additional the United States are diagnosed with programming, like its multimedia stoeach year, it’s no surprise rytelling platform “Stupid Cancer cancer each year, it’s no surprise that Stupid Cancer has become a leader in that Stupid Cancer has Stories.” the AYA cancer world.

Through “Stupid Cancer Stories,” become a leader in the Stupid Cancer notes that the chalwhich launched in 2020, the nonprofit lenges of young adults with cancer is collecting young adults’ stories about AYA cancer world. include infertility, loss of identity and the cancer journey to share with other independence, lack or loss of insurance warriors in various mediums. You can and the stalling of career development. One of the biggest submit a written story or a video story about your expechallenges, though, is isolation, the ending of which is riences. Stupid Cancer also hosts open mic nights over entrenched in Stupid Cancer’s mission.

Zoom where participants can share stories in front of

A 2015 study in journal Dialogues in Clinical others. The performances are recorded and uploaded to Neuroscience found that “younger age is consistently assoStupid Cancer’s video library. ciated with higher rates of psychological distress and psy “We’re building a library of experiences,” says chiatric syndromes in adults with cancer.” In adulthood, Donahue. “Wherever you are in your cancer journey, significant friendships and romantic relationships become whether you’re newly diagnosed or at 10 years of survia defining feature of life. A cancer diagnosis in young vorship, you can be connected to those who have been adulthood causes disruption to these social aspects and through what you’ve been through.” can leave a warrior feeling isolated, lonely or depressed.

While the novel coronavirus has left event planning “There’s a real loss of [the] future that people have in 2021 as a mystery, Stupid Cancer plans to continue to process. They’re grieving what could have been in the offering digital programs even when in-person gatherings life they thought they were going to have,” says Donahue. are safe again. Whether during a pandemic or not, easing “The support system you had before cancer is maybe not the burden of isolation that AYA warriors can feel is the going to cut it with cancer because if you’re lucky, you’re end-goal. surrounded by people that love you and are able to support “We have fostered friendships between people. I just you. But they might not really know what to say, or what think it’s really incredible,” says Donahue. “In a time of they’re saying might not really be helpful. So, finding that deep isolation, it really helps people reach out and connect. community of survivors is so critical for many.”

That we’re able to help facilitate that is very wonderful.”

As director of programs, Donahue’s main goal over the past few years has been to grow Stupid Cancer’s programming and create more opportunities for AYA warriors to connect and find each other. One of Stupid Cancer’s cornerstone events is CancerCon, a four-day gathering that takes place every year in different locations and offers warriors not only a community of people who know what they’re going through, but informational workshops, group discussions and social activities, too. While the event is extremely successful, Donahue recognizes To learn more about Stupid Cancer, visit stupidcancer.org.

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Back to Business While some workplaces have begun bringing employees back into the office, there’s still substantial concern about the risk of working in close quarters during a pandemic—especially for immunocompromised warriors.

BY MAURA KELLER

H

ere’s one thing we know: The COVID-19 pandemic has altered everyone’s personal and professional lives in a myriad of ways. For immunocompromised cancer survivors, there is an elevated risk of serious complications if they contract the virus. As Rebecca Nellis, executive director of CEW Foundation’s Cancer and Careers program, explains, many survivors feel anxiety about returning to their workplace before the pandemic is over or a vaccine has been approved and distributed. Many more have had to navigate additional feelings of fear and stress because they still reported to an on-site workplace throughout the pandemic.

In September 2020, Cancer and Careers asked cancer patients and survivors in their community to complete a voluntary anonymous survey about the impact of the COVID-19 virus on their work lives. According to Nellis, results from the Cancer + COVID-19 + Work Survey show that more than half of respondents (62 percent) feel or felt uncomfortable going back to work and 48 percent said they had some fear of being infected with the novel coronavirus at work.

“Findings demonstrate that there are deep-seated concerns and discomfort when it comes to working during this time,” Nellis says.

MEETING THE NEEDS OF THOSE WITH CANCER

The first thing cancer patients and survivors should do is communicate the specifics about their work situation with their health care team. Telling their doctors as much detail as possible—describing the physical layout of their workspace, information about their particular role, the current safety measures or lack thereof in place—will allow them to offer the best guidance pertaining to necessary protections.

“Besides following standard public health safety guidelines like wearing a mask, maintaining social distancing and disinfecting hands and surfaces, health care teams can provide additional individualized advice that is specific to a person’s medical needs and individual work environment,” Nellis says.

Leading oncology physical therapy specialist Dr. Leslie Waltke utilizes her 15 years of experience to lead cancer rehab courses for professionals and host a video series that answers questions about side effects, recovery, health and exercise after cancer. Waltke says that in addition to the regular stressors of returning to work, cancer survivors must now also deal with the risk of contracting the COVID-19 virus and the workplace changes it has created.

“Alterations in how business is conducted, how we interact with customers and co-workers, continual changes, new learning and a general loss of normal routine certainly further increase the level of anxiety and uncertainty,” Waltke says.

When things get complicated, communication is absolutely key. Make sure you have medical clearance from your cancer team to safely return to work. Different cancer treatments and cancer types affect the immune system to varying degrees. Discuss with your oncologist both your risk of contracting the novel coronavirus as well as the risk of becoming seriously ill from the virus.

“Once you know this risk information, talk with your supervisor,” Waltke says. “Discuss the company’s pandemic-related policies and safety guidelines.”

Will you need to provide your own personal protective equipment (PPE) like face coverings and hand sanitizer, or will they supply it for you? How will they alter and manage shared spaces?

How often will they be cleaning? And perhaps most importantly, how will they enforce proper mask wearing?

“Asking the questions about what their workplace is doing to ensure employees’ safety and health during this time can determine whether concerns are being thought through and planned for, or whether it may be necessary to have additional conversations,” Nellis says.

In addition to making sure their employers are prioritizing the health and well-being of staff by providing protective measures, Nellis suggests employees might also want to look into making a request for reasonable accommodation under the Americans with Disabilities Act (ADA). States also have fair employment laws, many of which provide additional protection beyond what the ADA offers.

“It’s important to note that the ADA has certain eligibility requirements that must be met in order to use it, but even if those requirements aren’t met, an employer might be open to ideas that enable them to support their employee during this time while still meeting their business needs—especially since many modifications cost little to no money at all,” Nellis says.

It’s important to remember that an employer might make a blanket assumption about their employees’ readiness to return to the workplace, without considering everyone’s individual comfort levels and/or risk factors. This can be especially hard if an employee with cancer has not disclosed their diagnosis to their employer and still is not comfortable doing so.

“There’s also the possibility that co-workers might not consider themselves at high risk of contracting COVID19 or might be too lax about safety measures, so depending on the situation and the person’s comfort level, it might help to talk to a manager [or] supervisor or human resources about communicating the importance of safety requirements to the whole staff,” Nellis says.

The novel coronavirus impacts everyone and every workplace, so there will be many people with different reasons—not just cancer—concerned about safety and returning to in-person work.

“Remember knowledge is power, and knowledge is needed now more than ever,” Waltke says. “Just like getting through cancer treatment, persistence is key. As pandemic fatigue becomes a thing for all of us, we must fight complacency. Protect your hard-fought-for health now as best you can. Remember, as a cancer survivor, persistence is your superpower.”

SAFETY REMINDERS Because the COVID-19 virus is only a year old and this is the first pandemic for nearly all of us, misconceptions and safety mistakes have run rampant. Here are some things to keep in mind regarding your safety.

1. Screening procedures are good, but not perfect. Just because someone passed through screening to get into your workplace doesn’t mean they don’t have the COVID-19 virus. Remember, many people with the COVID-19 virus are asymptomatic and unaware of their status.

2. If someone tested negative for the COVID-19 virus two days ago but were at a restaurant or in a crowded public space yesterday, that negative test two days prior becomes irrelevant.

3. People are still wearing ineffective face coverings. Avoid people wearing masks with valves. These valves allow the person’s exhaled air to pass through the mask, rendering them ineffective at protecting you from the novel coronavirus. Avoid people wearing plastic face shields without a mask underneath. Studies have shown that plastic face shields alone do not fully block exhaled droplets. Avoid people wearing thin or polyester spandex neck gaiters. Current studies show they do a poor job of limiting exhaled droplets.

4. People are still using masks incorrectly. Avoid people wearing masks under their nose. And certainly avoid people who pull their mask down to talk.

cancer & the environment 92 WHERE THERE’S SMOKE, THERE’S FIRE

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Where There’s Smoke, There’s Fire

U.S. military bases across the Middle East are partaking in open air burn pits to cheaply destroy unwanted items. In the process, some soldiers are paying a deadly price.

BY MARIA C. HUNT

T

he words “burn pit” may sound like a little hole in the ground, but the open air pits used to burn garbage on military bases across Iraq and Afghanistan are of epic proportions, like that biblical lake of fire.

When Veronica Landry came back to base every day from working as an operations specialist/historian for KBR, the company that set up the Marez and Diamondback bases in Mosul, Iraq, she found little black flecks all over her room.

“It was soot and ash from the burn pits all over my room. We were exposed to the burn pits every day,” she says.

Those pits burned everything unwanted on the base: styrofoam, plastic water bottles, air conditioners, vehicles, batteries, medical waste and tires. “We always knew it was tire day because you could see the black smoke was so bad,” Landry says. “It was considered a cost avoidance measure to using incinerators.”

The Environmental Protection Agency website notes that burning trash creates dioxins that endanger the environment and human health. These potent organic chemicals accumulate in the body, and over time dioxins can suppress the immune system, disrupt hormones and cause cancer.

While burning trash is outlawed across the U.S. because of the toxins it creates, those laws didn’t apply on military bases.

U.S. President-elect Joe Biden believes his son Beau Biden, who died in 2015 at age 46 of brain cancer, became ill after exposure to burn pits. Beau Biden was deployed to the Balad Air Base in Iraq as part of the Delaware Army National Guard in 2008. “Exposure to burn pits, in my view, I can’t prove it yet, he came back with stage IV glioblastoma. Eighteen months he lived, knowing he was going to die,” said Joe Biden in a 2019 speech to the Service Employees International Union.

And Landry believes chemicals she was exposed to while living on base ruined her health and left her with constrictive bronchiolitis, an incurable lung condition that narrows the small airways. Landry and thousands of vets who served 92

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in Southwest Asia and Africa are dealing with respiratory problems, immune disorders and cancers that they believe were caused by toxic exposure during their military service.

But the Veteran Affairs’ (VA) position is that while smoke from toxic burn pits causes temporary eye, skin and lung irritation, “research does not show evidence of long-term health problems from exposure to burn pits.” As of August 2020, more than 212,000 service members have signed up for the VA’s Airborne Hazards and Burn Pit Registry.

Yet the VA has denied 78 percent of burn pit exposure disability claims as of September 2020. An article in Stars and Stripes revealed that of the 12,582 veterans who made claims since 2007, just 2,828 have been granted. Most vets and their families are handling disabling health problems and paying for medical treatment on their own.

Veterans organizations like The TEAM Coalition, TAPS, Hunter Seven Foundation and Burn Pits 360—plus a bipartisan congressional delegation—are pushing for federal legislation called the Presumptive Benefits for War Fighters Exposed to Toxins Act of 2020. It’s modeled after the presumptive illness law for 9/11 first responders who were diagnosed with cancer years later. Comedian and activist Jon Stewart, who spoke out for 9/11 first responders, also supports this bill that would require the VA to take care of veterans who developed a range of lung conditions and cancers.

“The presumptive bill is the way of removing some of those barriers so military members don’t have to act as [their] own lawyer. That’s a lot of burden to put on someone,” says Julie Tomaska, a veteran of Operation Iraqi Freedom and board member of Burn Pits 360.

And in the meantime, activists are sharing health information like the VA training document, which veterans can use to teach their doctors about chemical exposures and how to document claims. They’re also educating both veterans and the public on the many ways toxic

exposure has destroyed so many people’s lives. you know there’s a problem,” she said. Her husband joined the Darryl “DJ” Reyes, a retired US Army colonel, used registry, but didn’t think he would need to file a claim. to love running—he ran more than 40 marathons before In 2016, Heston started having severe back pain and he began serving in the Persian Gulf in 2003. “Today, I fatigue, losing 75 pounds without trying. After 10 months cannot run down to the end of my residential street of tests and unclear results, he was diagnosed with stage without being out of breath, lightheaded and with chest IV pancreatic cancer in January 2017. He began treatment pains,” he writes in an email. He blames the burn pits he with Thomas Abrams, M.D., an oncologist at the Danawas exposed to during his service in northern Iraq for his Farber Cancer Institute. Abrams had never heard of burn ongoing immune and respiratory problems. pits before he met the Hestons.

“You would have a thin layer of fine soot all over your “I said to myself, ‘This can’t be good. This has to be clothes, your hair, in your ears and nose,” Reyes writes. “While contributory to human diseases, certainly lung diseases, deployed, troops became sick but chalked it up to the ‘Iraq and probably cancer,’” recalls Abrams in a phone intercrud’ or ‘Afghan crud.’ We would get antibiotics to help clear view. “Though it’s very hard to pin down a specific cause up the sickness. Coughing, wheezing and general upper respiof any cancer, there certainly would be enough toxins in ratory congestion were common symptoms.” Still, he considers the smoke to contribute to human cancer.” himself lucky: as a 33-year veteran, his health care is covered.

Abrams wrote a letter to the VA connecting Heston’s

Landry, a former competitive bodybuilder, uses cancer with his service for his disability claim. Heston’s organic eating and holistic approaches to help deal with a claim was denied by the Department of Defense because raft of health problems, including brain hypoxia, obliterclaims must be filed within 180 days of “qualified service.” ative bronchiolitis and what her doctor suspects is mixed But Heston received VA benefits before he died in connective tissue disorder, a condition that’s often heredNovember 2018. itary. There’s no history in Landry’s family, but Abrams encourages more vets to join the VA “We can’t the other cause is exposure to silica and polyviburn pit registry so it’s easier to see patterns. nyl chloride, also known as PVC. A commonly wait 40 years. “These diseases take years to develop, so expoused plastic found in plumbing, plastic straws, sure itself is not going to show signs of disease food wrappings and car engines, PVC is consid- The evidence is until years later,” he says. ered one of the most toxic plastics to humans. really clear.” The VA is still studying a September 2020 Landry won disability payments connected report from the National Academies of Sciences, to her work as a civilian in January 2020. But instead of Engineering and Medicine, which found the agency needs getting compensation based on the degree of her disability to do a better job of gathering data and evaluating disabilas a veteran would, her settlement is based on her income. ity claims. A potential 3.7 million people could have been Landry receives $4 a week. And she had to fight for nearly exposed to toxic smoke while serving in Southwest Asia five years to get it. since 1990, when the Persian Gulf War began.

Being your own advocate is key: Landry said that The NAS report notes that out of the 27 lung condiher own lung issue wouldn’t have been discovered if she tions associated with burn pit exposure—including asthma, hadn’t had private insurance coverage and persisted until emphysema and cancers of the throat, mouth and lungs— she found a doctor who agreed to perform an open lung none met the VA criteria for proving that it was caused by biopsy. The invasive test is the only way to diagnose her service-related exposure. Mark Utell, M.D., a pulmonologist lung condition that may be written off as asthma or pneuand University of Rochester Medical Center researcher who monia. Still, after her close calls and major surgeries, chaired the committee, noted in the report, “the absence of Landry considers herself lucky to be alive. evidence is not evidence of absence.”

Many young vets have died from rare cancers after their June Heston says the VA would have a much clearer service. One of those was Amie Muller, a mother of three who picture if they let surviving families add death infordid two tours with the Air Force and Minnesota Air National mation to the burn pit registry. She refers to burn pit Guard at Balad Air Base. She was diagnosed with stage III panchemical exposure as this generation’s version of Agent creatic cancer at age 36 a few years after leaving service. Muller Orange, an herbicide containing dioxin that was widely died nine months later. Her husband Brian Muller, Tomaska used to clear Vietnam jungle vegetation. An estimated 2.6 and other friends now run the Amie Muller Foundation, which million troops were exposed to Agent Orange, according gives grants to veterans battling pancreatic cancer. to a ProPublica report. The Agent Orange Act of 1991 Pancreatic cancer also killed husband Mike Heston, a gave presumptive medical coverage to some veterans who Brigadier General in the Vermont Army National Guard who developed cancer and long term illnesses like Parkinson’s served multiple deployments in Afghanistan between 2003 disease, or gave birth to children with defects like spina and 2012 over his 34-year military career. In an interview bifida, but others are still fighting for coverage. with Radio.com, June Heston said during her husband’s last

Heston says vets struggling with toxic exposures deployment, ash from burn pits was damaging the aircraft. shouldn’t have to fight the same fight, and she doesn’t To protect the equipment, base officials moved the burn pit want them to fight alone. “We can’t wait 40 years. The evicloser to the barracks where her husband and his troops slept. dence is really clear,” she says.

General Heston’s last deployment ended in 2012 and he

“All doctors need to know this because they’re not returned to Vermont and took over as second in command of the going to look for cancer in a young, fit military member Vermont National Guard in 2013. June Heston said her husband unless they know there’s a risk factor with burn pit expoadvised his troops to sign up for the VA burn pit registry when it sure,” Heston says. “The biggest piece of this fight is making came out in 2014. “He said you don’t establish a registry unless people aware this is what our government was doing.”

Cancer Wellness

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the supporters

KATHRYN & LAURA AS TOLD TO BRITT JULIOUS

Don’t take things for granted.

KATHRYN: For as long as I could remember, we always baked. We always had baking in our family as an activity.

Every once in a while, we would still bake as we got older.

LAURA: Just before Kathy got sick, we actually talked about doing some type of catering or something where we could bake or cook for people. It was super early working and then she fell ill.

KATHRYN: I was by myself at the moment they gave me my results and I was [in] disbelief. Almost like I didn’t hear it. Like, that’s not me. That can’t be.

LAURA: During her illness, we baked a lot. I baked a lot.

Brought cupcakes to the hospital or at home. We would dream of flavors and talk about it to keep our mind off of things.

KATHRYN: I never tried to lose myself in the downs of it. The frustration sets in, but you still try to be happy at times and move on. That’s when my sister and I started to bake. I think it was something to do to keep something normal or something different going on than what every treatment was—the waiting, the going in and not going in, the not feeling well.

LAURA: I did a bake sale for a fundraiser that her friend hosted for Kathy for her medical expenses. I packed 250 cupcakes and got quick donations for the cupcakes. And everybody liked them. I was like, ‘Hmm, maybe this could be something.’

KATHRYN: Like maybe this is what we should be doing.

This is what we love to do.

For more information on Kathryn and Laura, visit cancerwellness.com

KATHRYN: Laura handles most of the business. My life now is just as I dreamed of and more. I have a beautiful daughter. I’m a stay-at-home mom. I have a great husband.

I can help out with the bakery. I’m so grateful. Being in remission, it’s taught me a lot. It’s made me so much more appreciative for everything.

Photo by Sarah Bell

LAURA: And then when it was [Kathryn’s] time to go back to work, she was in remission. And I had time to make a decision of if I should go back to work or take this to the next level. I had the big green truck first. I opened up Elmhurst second. I had the little green truck because it just fell into my lap. And then I expanded into Oak Park.

There’s a niche for it and a need for the food that we offer.

Will and Grundy Counties Building Trades Council Donald "Doc" Gregory, President

Thank you Pat for sharing your story!

Pat Young, Financial Secretary Eric Davis, Trustee Mike Serena, Trustee

Hugo Manzo, Vice President Wade Beasley, Recording Secretary Mike Clemmons, Trustee Kevin Hray, SGT-at-Arms

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