Cancer Wellness Magazine: The Women's Health Issue with Danielle Doby by cancerwellness

FALL 2021

THE WOMEN’S HEALTH ISSUE LOOKING FOR THE LIGHT: HOW DANIELLE DOBY FOUND SMALL JOYS IN THE CANCER JOURNEY

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Photo by Sarah Bell

all is my favorite season to enjoy change. It is the most dramatic. As temperatures drop and leaves soar, so do my spirits and motivation to set new goals and explore uncharted wellness frontiers. In this season of great change, it is my pleasure to introduce to you some fresh leadership at the publication. Long time creative director Natalia Espinosa will be assuming the role of editor-inchief, and senior editor Taylor Novak will become responsible for all written content and editorial direction. Both women’s expertise and unwavering commitment to Cancer Wellness and its values makes them unequivocally suited to lead. Speaking of leadership, our fall issue features a bevy of spirited individuals and organizations whose ability to lead by example is downright inspiring. Our brilliant cover star wordsmith, Danielle Doby, was gracious enough to share with us all her beautiful articulations on the lessons cancer can provide (p. 62). Or take Lida Sherafatmand for example, an Iranian artist who is literally transforming the landscape of medical spaces and improving the patient experience in doing so (p. 31). And when bravely delving into the realm of sexual health, sexuality occupational therapist Tess Devèze teaches us that touch therapy can help retrain neurological connections to experience pleasure (p. 28). When we disconnect from ourselves due to treatments, our sensations, desire and feelings of pleasure start to lessen. As our regular columnist Liz Tuckwell (p. 51) notes, “It is all about finding pure joy.” To experience pure, unfettered joy in life in any capacity is probably the best goal out there, and I hope that our stories, tips and revelations will set you on a course to experience it on your own terms and even inspire it in others. Need I say more to seduce you into a full-fledged love affair with fall this year?

Cancer Wellness

CANCER WELLNESS CONNECTS. @cancerwellnessmag

FALL 2021 31

STATE OF THE ART An Iranian artist is changing the landscape of medical spaces with her creations.

BEAUTY 36

FACE FIRST The latest cW Portrait Series spotlights the many faces of cancer.

COMPLEMENTARY MEDICINE 48

BUZZED & BAKED Go beyond a sugar high with creative cannabis confections.

AROUND TOWN 54

CANCER IN COURT A look at the laws and movements ensuring cancer isn’t left behind in legislation.

ENTERTAINMENT 69

BRAVING THE BATTLE For former NFL player Devon Still, the battle against neuroblastoma is personal.

TALK OFF Catharsis and community abound in weekly podcast “Talk About Cancer” and its candid look at the disease.

RESOURCES 84

PULLING THE C CARD A free membership offers discounted stays at select NYC hotels while you’re in treatment.

62: LOOKING FOR THE LIGHT NUTRITION 24

ZERO WASTE New drug development may make it easier to confront “wasting syndrome.”

MIND & BODY 28

BRINGING SEXY BACK Get in the mood with these slow and steady steps to rediscovering your sexuality. Cancer Wellness

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 ALYSSE DALESSANDRO SANTIAGO, TESS DEVÈZE, CATHERINE EVES, BETHANY KANDEL, MEGHAN KONKOL, LESLIE SNADOWSKY, MARIA TRIPODIS, ELIZABETH TUCKWELL, ERIKA R. WHITEHEAD

IN-HOUSE PHOTO & VIDEO SARAH BELL

CONTRIBUTING PHOTOGRAPHERS SARAH BELL, JOHN KHUU

INTERNS NEIDA AGUILAR, FRANCESCA HALIKIAS, ALEX MANAA

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

EXECUTIVE ASSISTANT ISABEL GARCIA, ANTONIJA ROGIC

SYSTEMS ADMINISTRATOR JACK SAXE-STARAL

DISTRIBUTION

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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.

Cancer Wellness

Photo by Michelle Dokes Photography

#cW MANTRA

“THE DAY I REALIZED THAT CANCER DIDN’T HAPPEN TO ME BUT FOR ME TO FIND MY PATHWAY TO PURPOSE WAS WHEN I TRULY BEGAN TO LIVE!”

-Nicole C. Bullock @msnicolecbullock

Cancer Wellness

cW Online

WHAT YOU MAY HAVE MISSED

CW PLAYLIST MELLOW

A DONATION OF DESTINY If she hadn’t donated a kidney, Ashly Gardea may have learned too late about her Hodgkin lymphoma cancer diagnosis.

Light a candle, grab the weighted blanket and settle into your coziest corner because it’s time to chill out! Issue 12’s tracklist features meditative melodies perfect to kick back and relax with.

To instantly access the playlist, open the Spotify app. Tap Search then the camera icon to scan Spotify code.

TRACKLIST • (GUITAR) - ALT-J • AVRIL 14TH - APHEX TWIN • TOGETHER WE WILL LIVE FOREVER C LINT MANSELL • INSTRUMENTAL 3 - FLORIST • VISITING FRIENDS - ANIMAL COLLECTIVE

EASY ON THE EYES Everyday Runway columnist Melissa Berry sets her sights on stylish specs that won’t break the bank post-treatment.

• HEADACHE - GROUPER • PIANO 2 (MOUNT VISION) - EMILY A. SPRAGUE • WATCHING IT UNFOLD - LAWRENCE ENGLISH • SEA OF TRANQUILITY - JULIUS ASTON • NOCTURNE - ANA ROXANNE • MEMORY WITHIN MEMORY - SECRET PYRAMID • PLANETARY AMBIENCE - JAPANESE BREAKFAST • THE CASCADES - FLEET FOXES • MOONLIT SKY - COLLEEN • IN PRAISE OF TEARS - KYLE BOBBY DUNN • WHEN I THINK OF YOU - EX CONFUSION • SIX SOUNDS - TOMASZ BEDNARCZYK • SEPTEMBER SONG - AGNES OBEL • TACOMA TRAILER - LEONARD COHEN • HUMAN QUALITIES - EXPLOSIONS IN THE SKY

Cancer Wellness

More stories at CancerWellness.com ON @CANCERWELLMAG, WE ASKED WHAT HELPED US MOVE PAST OUR CANCER JOURNEYS.

The cW Agenda

ALL THE NEWS YOU NEED TO KNOW SAY IT AIN’T SODA

Researchers at the Washington University School of Medicine have found a link between consumption of sugary beverages during adolescence/ adulthood and an increased risk of women under the age of 50 developing colorectal cancer.

NO SMOKE, NO TOKE

Despite its many health benefits for cancer side effects and growing legality across the country (including Virginia, South Dakota and Connecticut), marijuana use remains low among the cancer community. Researchers at the Virginia Commonwealth University Massey Cancer Center say marijuana use peaks at around 9 percent for cancer patients compared to 14 percent among people with no cancer history.

MASK-QUERADE

In-person events are back. This October 29, the Lyon Family Foundation presents the 4th annual Hoosier Ball, a masked benefit in support of their initiatives, including pediatric cancer. hoosierball.com/hb2021

D-LIGHT

Load up on good foods. A study in the journal Gastroenterology says adults younger than age 50 should consume higher amounts of vitamin D through food as a colorectal cancer prevention strategy. Cases are rising in younger adults, making this news especially relevant.

ONE AND ONLY

A new study by the University of Eastern Finland has found an increased risk of cancer by around 10 percent of men who identify as lonely, regardless of age, socio-economic status, sleep quality, body mass index and other risk factors. And cancer mortality was even higher in patients who were unmarried, widowed or divorced.

NIGHT LIGHT

The Leukemia & Lymphoma Society’s annual Light the Night Walk is back October 23rd and better than ever. Join the event to help raise awareness, find cures and deliver better access to blood cancer treatments. lls.org

BRAVO-CADO

Grab another slice of that avocado toast! A new study published in the journal Blood says a compound in avocados can actively target the enzyme VLCAD, which is found in higher amounts in leukemia cells.

Cancer Wellness

The World According to … Danielle Doby Writer, artist and cover star Danielle Doby gives us a look into life from her point of view.

WHAT’S YOUR BIGGEST MOTIVATOR? Creating “Me, too” moments of connection through storytelling. PIECE OF MEDIA (MOVIE, ALBUM, BOOK, POEM, ETC.) THAT HAS IMPACTED YOU THE MOST? “Geese” by Mary Oliver YOUR GO-TO COMFORT FOOD? Vegetarian Pho

WHEN DO YOU FEEL LIKE THE BEST VERSION OF YOURSELF? When I spend time in nature. BESTS THING THAT HAPPENED TO YOU THIS WEEK? I celebrated my birthday, my father’s birthday, and my dog’s birthday!

BEST SONG TO DANCE TO? Oh, there are so many. Lately, I have been loving Leif Vollebekk. His voice is very “Sunday morning, slow dancing barefoot in the kitchen.” FAVORITE WAY TO SET THE MOOD FOR WRITING? I have a favorite pen and I love to listen to instrumental music - it helps me drop into my body. If I am lucky, it’s raining outside. WHAT’S THE MOST USEFUL LIFE SKILL YOU’VE PICKED UP? My meditation and breathwork practice. And my ability to make a really, really good playlist. WHAT’S THE BEST ADVICE YOU’VE EVER RECEIVED? Something I repeat to myself often, is - it doesn’t need to be perfect, only truthful. FAVORITE YOGA POSE? Anything heart opening. LAST PHOTO YOU TOOK? A self-portrait series while I was going through treatment.

Photo by Danielle Doby

WHAT HOBBY/SKILL DO YOU STILL WANT TO PICK UP? Horticulture - my dream is to have my own flower farm in Oregon.

Cancer Wellness

the warrior

ERIKA HLAVACEK AS TOLD TO BRITT JULIOUS

Photo by John Khuu

I’m four years in now, but I’ve learned a lot in the four years and the narratives behind lung cancer need to be rewritten. We had moved out of the city to start our suburban life with our kids. I was an airline pilot. That’s where my husband and I met—we both flew airplanes. It was the summer of 2017 and I had a cough. It didn’t go away. Everyone in the family had a cough, too, but theirs all went away. I didn’t think anything of it at first. Then I started having some back pain that went along with it. I went to the doctor several times, and it never led to anything except for misdiagnosis. Eventually, the back pain became so bad that I had to go to the hospital and I knew something was really wrong. I knew that I was not coming out so quickly. Ten days later, I left the hospital with a stage IV lung cancer diagnosis. [I was] completely blindsided. No risk factors for the disease. I knew nothing about lung cancer. I was just mourning this life that I thought I was gonna have that has completely changed overnight. What do I do now? What do I do in this space? What do I do now? What do I do in this space? I just researched and researched and read. I found other survivors that were thriving with the disease. Everyone should know the real facts. It just takes lungs to get lung cancer. I’m one of the almost 20 percent of newly diagnosed non-smoking young women and nobody knows why. I was lucky and found out a genetic mutation was driving my cancer. There [were] new research breakthroughs in the form of pills that would allow me pretty much a normal life. No one around me even knew that I had stage IV lung cancer because of these pills. They basically stop the cancer from growing. They don’t kill all the cells in your body; they just stop the cancer from growing so you can go on with your day. It allowed me the space to become an advocate for myself and for other lung cancer survivors. I wanted my kids to see how you can turn this around. My husband and I, during the pandemic, decided to start a nonprofit. It’s called yEAHbestlife. We wanted to remind everyone to live their best lives every day while we raise money for lung cancer research. So far, we’ve raised $30,000. I started hashtagging #bestlife on everything I did because I realize time is a gift. We need to make the most of every day, stop putting things off and be present. We only have today, we’re not promised tomorrow.

To hear more from Erika, visit cancerwellness.com

Cancer Wellness

The cW Library Flipping through the pages of issue 12’s featured books will unveil the possibility of a well-balanced and full life at any point in your cancer journey. Take a peek! BY BRITT JULIOUS

DHARMIFY BY HARGOBIND KHALSA

CANCER R.I.P.: THE ULTIMATE FIGHT BY STEVE KELLY

In this unique life guide, Khalsa identifies the best practices for one to “get your mind right, your business tight, be a love light, so you feel alright.” It’s the sort of advice cancer warriors, thrivers and supporters can equally enjoy.

Entrepreneur and real estate developer Steve Kelly wasn’t going to let a brain cancer diagnosis stop him from living a full life. In this uplifting memoir, Kelly details how cancer doesn’t have to be a death sentence and the lessons he has learned along the way to live a life of abundance.

“Dharmify” is available on amazon.com.

“Cancer R.I.P.: The Ultimate Fight” is available on barnesandnoble.com and amazon.com. MOVING THROUGH CANCER BY DR. KATHRYN SCHMITZ

BETWEEN TWO KINGDOMS: A MEMOIR OF LIFE INTERRUPTED BY SULEIKA JAOUAD

This 21-day program and guide, developed by Kathryn Schmitz, Ph.D., MPH, FACSM, the director of the Oncology, Nutrition and Exercise group at the Penn State Cancer Institute, aims to take cancer patients from warriors to thrivers. Strength training and exercise are the core of Schmitz’s plan, things cW has detailed positively in our pages.

In love and then living in Paris, Jaouad’s post-collegiate life as a war correspondent was just about to take off when she was diagnosed with leukemia. After four years battling the disease, Jaouad was ready to move on, but as any thriver knows, the post-cancer battle can be even more complicated than the initial diagnosis. In this riveting and tender debut (which has been celebrated by esteemed authors like Elizabeth Gilbert and Kiese Laymon), Jaouad details how a 100 day, 15,000 mile road trip would change her life forever.

“Moving Through Cancer” is available wherever books are sold.

“Between Two Kingdoms: A Memoir of Life Interrupted” is available wherever books are sold.

Cancer Wellness

cW Chat

Heidi Nafman-Onda and Dr. Pierre Onda thought of themselves as well-versed in their wellbeing—until Heidi was unexpectedly diagnosed with inoperable stage III non-small cell lung cancer. What started as one couple’s search for support has evolved into a nationwide awareness campaign, The White Ribbon Project, aiming to rewrite the narrative of a stigmatized disease.

Dr. Pierre: I had felt very powerless at the time of diagnosis. I am a physician, and I felt like I couldn’t help my wife. The ribbon let me feel like I was alleviating the stress and anxiety she was experiencing. Now it’s morphed into this emotional experience because for every ribbon we make, we use the original ribbon as an outline. After I make them, I realize this is going to someone who has a deep connection with lung cancer—a survivor or their loved one—and all these emotions come. It gives us a sense of purpose and fulfillment. People have different coping skills to deal with what they’re going through, and it’s perfectly fine to remain private. But for us, this helps.

BY TAYLOR NOVAK

WHAT LED TO YOUR DIAGNOSIS? Heidi: I wasn’t experiencing any respiratory symptoms. I did have a twinge on my lower left side, which reminded me of ovarian cysts I’d had. I thought I should have it checked. What came back was a total shock to us. I had lung cancer and it was grim. Our heads were spinning but when we met with the oncologist, we were given so much more hope. He had told us about immunotherapy FDA approved just one month prior to my diagnosis. I responded well to it after chemoradiation. No cancer treatments at all now since January 2020, and as of my last scan in May 2021 there’s no evidence of disease. WHY DO YOU BELIEVE YOUR DIAGNOSIS TO BE PART OF A PUBLIC HEALTH FAILURE? Heidi: I have a background in health education but I didn’t know that anyone was able to get lung cancer. What we learned through the media and public health messaging was that the only way somebody was at risk for lung cancer was if they had a history of smoking. I’ve never touched a cigarette. Dr. Pierre: Of the population that’s eligible for lung cancer screening, only about 10 percent get it in the United States. Let’s increase the cancer screening rates. That’s going to demand a partnership between advocates, physicians, public health officials, the media. It’s important. That’s what contributed to improving cancer screening rates for breast cancer, colon cancer, prostate cancer—we could do the same.

Photo provided by Heidi Nafman-Onda

Heidi: The awareness that has been out there is preventative—so, ‘Don’t smoke and this won’t happen to you.’ But that’s not true. I started meeting more and more people through the White Ribbon Project—we’re talking people in their early 30s who were athletes who have advanced stage lung cancer because no one thinks to screen them or even make them aware of the possibility.

Heidi: People started posting photos of them with their ribbons, and I noticed that no one looked ashamed to have lung cancer. This is something that helps us, helps this stigma. We’ve made over 700 free ribbons since October 2020. Now we’re teaching people across the country how to make them and get them to the survivors, advocates, caregivers and cancer centers. We have cancer centers proudly displaying them and engaging with their community. That is what we need. YOU RECEIVED A DEVASTATING AND SHOCKING DIAGNOSIS. NOW IT’S BLOSSOMED INTO THIS SENSE OF COMMUNITY AND OPPORTUNITY FOR REAL CHANGE. HOW HAS SEEING THAT GROWTH FELT? Heidi: I get a bit emotional. It’s incredible to see how this has spread and how people feel this confidence and are finding community. I felt very alone at the beginning. It feels so good that others like me have a voice and understand that they don’t have to hide—in fact, it’s the opposite. Their stories and voices are so important. These are real people who are human beings who are suffering and have been made to deal with a decades-long campaign that we shouldn’t show ourselves, that this is a death sentence. The outlook for lung cancer has been so dismal for so many years that efforts or survivorship skills have just not been explored but now it’s like, ‘We’re surviving. So help us. Give this cancer attention that is long overdue.’ For more information on The White Ribbon Project, visit thewhiteribbonproject.org.

CAN YOU DESCRIBE THE MOMENT YOU DECIDED TO MAKE AND HANG YOUR FIRST WHITE RIBBON? Heidi: It was after months of working with other advocates to engage our cancer centers and getting dismissed and ignored [by centers]. As we were getting closer and closer to Lung Cancer Awareness Month, I had one particularly hurtful rejection. I broke down crying. Pierre had taken up woodworking, and I told him, ‘I just want you to make me a big white ribbon out of wood and I can put it on our front door.’ I didn’t have to ask permission to do it. I didn’t even know who would see it but at least I’d have a little more control. Cancer Wellness

Where Life Takes You

Tamron Little, who was diagnosed with peritoneal mesothelioma at just 21 years old, recalls her experience with the disease and how she never let it stop her from living each day with love. BY FRANCESCA HALIKIAS

Cancer Wellness

f you scroll through Tamron Little’s Instagram, you and he was right under Little’s nose. “I always say that it would never know that when she was just 21 years was a God intervention, like God placed me in the right old with a baby on the way, she was diagnosed with place at the right time,” she says. peritoneal mesothelioma, an aggressive form of Levine and his team gave Little and her family inforcancer that is considered an “old man’s disease.” mation about the HIPEC surgery, which focused on Fourteen years later, Little is now an influencer in the removing the mesothelioma from the abdominal cavity. cancer and mesothelioma world, with more than 14,000 Little immediately said yes, she wanted to do it. She was followers on Instagram. She recently launched her new ready to be cancer-free. The surgery took about 10 hours. podcast, “Talks With Tamron,” which dives into topics Little credits her husband—then boyfriend at the such as marriage, mental health, mom life and wifehood. time—and her family as her biggest support system. Little is also a contributing writer for asbestos.com and When her husband was at work, Little’s aunts, mother and The Mesothelioma Center, writing about her experience grandmother would come and help her out. to help other survivors. She remarks that a support system is vital to get “I was not your typical college student,” says Little. “I through cancer. “Who would just wake up in the morning had just found out that I was pregnant and to be honest, I and think that you have cancer? I never saw it coming,” was kind of down about it because I felt like I wouldn’t be she says. able to finish school, but I still pressed my way through Little also knows she had her son for a reason. It was and attended classes until I couldn’t,” says Little, who the ultrasound that showed her cancer early on enough to attended the University of North Carolina at Pembroke. beat it. “God made it so that Caleb saved my life,” she says. When Little was about four months along, she She now has three other children in addition to Caleb, began having symptoms, which were a mixture of both who she calls her miracle babies. After her surgery, she pregnancy and mesothelioma symptoms. Her pregnancy was told to be grateful for one child because she wouldn’t masked most of the mesothelioma be able to have any more children. symptoms, but she remembers feeling “I am grateful to God. I am living my constipated with no energy and expebest life, I’m really thriving,”says Little, “Who would just wake riencing stomach pains. Little ran back who is not on any medication currently up in the morning and and forth to the emergency room wonand has stable hemoglobin. “Everything dering if something was wrong. happens for a reason, and God makes think that you have Little had a scheduled ultrasound sure that he strategically aligns everycancer? I never saw it to find out the sex of her baby. During thing up in your life.” the appointment, Little sensed some Little has created an environment coming.” thing was off by the doctor’s silence. through social media where she inspires “Not to alarm you, but I saw someand empowers both cancer patients and thing,” the doctor said after telling women. She uses her journey as a platLittle she was having a baby boy. form to inspire others to live each day like it’s a gift, which Little was sent to another center to look more into is a message that continues in her new podcast. what her doctor thought was just a fibroid tumor. This “Remember that no matter where life takes you, center also said it was a fibroid tumor and told her why everything happens for a reason,” says Little. “Every day her hemoglobin was so low. After giving birth to her son, that you wake up, you have the ability and the authority to Little was given birth control to try and shrink the fibroid command your day. Whatever we go through during that tumor, but a few months later, she learned that the tumor day—it’s our choice of how we’re going to react to it.” did not shrink—it had actually grown to the size of a tennis ball and was in her abdomen. “That’s when [the doctor] told me I had peritoneal mesothelioma,” Little says. She didn’t know what mesothelioma was at the time. Peritoneal mesothelioma is a cancer caused by ingested asbestos fibers that develops in the peritoneum, which lines the abdomen. “The whole room stood still, and I was just staring at him. This big, tall man in his lab coat with blue scrubs on,” Little says of the moment she found out. “I looked around the room at my mom, aunt and husband. The expression on my mom’s face was just like, ‘Oh my gosh.’” Shortly after her diagnosis, her mother’s coworkers told her about Dr. Edward Levine, who worked at the same hospital as her mother. Her coworkers consulted him, along with her mother, and asked if Levine would take Little’s case of peritoneal mesothelioma—and he did. At the time, Levine was the only doctor specializing in peritoneal mesothelioma and the only one on the East Tamron Little is a mesothelioma thriver and writer for Asbestos. Coast that had successfully performed a heated or hypercom. Keep up with her on her blog, tamronlittle.com, and on thermic intraperitoneal chemotherapy (HIPEC) surgery Instagram @tamronlittle. Cancer Wellness

nutrition 19 IN THE MOOD FOR SUPERFOOD 24 ZERO WASTE

Cancer Wellness

IN THE MOOD FOR SUPERFOOD Enjoy the world’s healthiest foods to the fullest with these flavor-packed dishes! BY MARIA TRIPODIS

GINGER CURRY SALMON Yield: 4 servings 1 teaspoon curry powder 1 teaspoon ginger powder 1/2 teaspoon turmeric powder 1 teaspoon spirulina powder 1 teaspoon lemon zest 1/4 teaspoon black pepper 2 teaspoons kosher salt 4 teaspoons coconut sugar 4 salmon filets with skin, around 8 ounces each Extra virgin olive oil to drizzle

PREPARATION: 1. Heat oven to 350 F. Line a baking sheet with parchment paper. 2. In a small bowl, combine curry, ginger, turmeric, spirulina, lemon zest, black pepper, salt and coconut sugar in a small bowl to create the dry rub. 3. Pat salmon filets dry with a paper towel and place on baking sheet. 4. Pat the dry rub mixture on all sides except the skin of each salmon filet and let sit for 30 minutes at room temp for flavors to absorb. 5. Bake for 20 minutes, or until internal temperature reaches 140–145 F. 6. Serve immediately. Cancer Wellness

WILD GREENS PESTO PASTA Yield: 6 servings 1/2 cup dandelion greens, packed 1/2 cup arugula, packed 1/4 cup basil, packed 1/2 cup pine nuts + 1/4 cup, divided 1/4 cup nutritional yeast 1/4 extra virgin olive oil 2 garlic cloves 1 teaspoon kosher salt + 1/2 teaspoon, divided 2 teaspoons lemon zest 3 tablespoons lemon juice 1 pound orecchiette pasta 3 cups brussels sprouts, shredded

Cancer Wellness

PREPARATION: 1. Cook pasta in salted water according to box instructions. Drain and set aside, reserving 1/4 cup of pasta water. 2. In a food processor, combine dandelion greens, arugula, basil, 1/2 cup pine nuts, nutritional yeast, olive oil, garlic and 1 teaspoon salt. Blend until smooth. 3. In a large sauté pan, heat 1 tablespoon olive oil over medium heat. 4. Add 1/4 cup of pine nuts and toast for 1–2 minutes or until nuts start to brown.

5. Add shredded brussels sprouts and a pinch of salt. Sauté until brussels sprouts are tender and browned in some areas, about 6–8 minutes. 7. Reduce heat to low. Add cooked pasta, pesto, lemon zest, lemon juice and 1/2 teaspoon salt. Mix until all ingredients are evenly incorporated. Add a splash of pasta water if pasta is too dry. 8. Remove from heat and add to a serving bowl or shallow serving dish. Garnish with basil leaves and pine nuts. Serve warm.

GARLIC & SAGE MISO MARINATED MUSHROOMS Yield: 4 servings 1/4 cup extra virgin olive oil 3 tablespoons rice vinegar 2 tablespoons white miso paste 2 garlic cloves, minced 8–10 fresh sage leaves, finely chopped 1/4 teaspoon kosher salt 1/8 teaspoon ground black pepper 4 cups of assorted mushrooms of choice (cremini, portobello, shiitake, porcini, oyster, etc.)

PREPARATION: 1. Clean mushrooms under running water. Set aside. 2. In a medium bowl, whisk olive oil, rice vinegar, miso paste, minced garlic, sage, salt and pepper until miso paste has dissolved. 3. Using a paper towel, pat mushrooms dry, removing as much moisture as possible. 4. Chop mushrooms into 2-by-2 inch pieces.

5. Add mushrooms to marinade and let sit for 30 minutes to 2 hours at room temperature. 6. In a large sauté pan, heat 1 tablespoon of olive oil over medium heat. 7. Add mushrooms to the pan, forming a single layer. Cook for 7–8 minutes, stirring every 2 minutes, to brown. 8. Add browned mushrooms to a shallow dish or serving bowl. Garnish with sage leaves. Serve immediately.

Cancer Wellness

MACA DARK CHOCOLATE MOUSSE Yield: 4 servings 1 1/2 cups dark chocolate bar, finely chopped, or chips, 65 percent or above 1 tablespoon maca powder 1 teaspoon vanilla extract 3 egg yolks 1/4 cup coconut sugar Two 15-ounce cans coconut cream, refrigerated overnight 1 cup raspberries Cacao nibs, to top (optional)

PREPARATION: 1. Add chocolate to a microwave-safe bowl. Microwave in 20 second bursts until chocolate is melted. 2. Stir in maca powder. Set aside until mixture reaches room temperature. 3. Using a stand or handheld mixer, beat egg yolks on medium-high in a medium bowl until yolks turn light yellow in color, about 2–3 minutes. 4. Slowly add coconut sugar and vanilla extract, mixing constantly for 1–2 minutes. 5. In a medium saucepan, heat coconut cream and bring to a simmer. 6. Using a stand or a handheld mixer, mix the eggs on medium-high speed and slowly add the coconut cream, 1/2 cup at a time. 7. Add in the chocolate mixture and stir until evenly combined, about 1–2 minutes. Add mousse to 4 individual glass cups or small bowls. Cool in refrigerator for at least 3 hours to set. 8. Top with fresh raspberries. Top with cacao nibs or vegan whipped cream if desired. Serve cold.

Cancer Wellness

MACA SPIRULINA SUPERFOOD MUFFINS Yield: 4 servings 1 tablespoon maca powder 1 tablespoon spirulina powder 1 tablespoon matcha powder 1 tablespoon hemp seeds 1/2 cup almond flour 1/4 cup coconut flour 1/2 cup coconut sugar 1 teaspoon baking powder 1/2 teaspoon baking soda 1/2 teaspoon kosher salt 1/2 ripe avocado, mashed 1/2 ripe banana, mashed 4 tablespoons pure maple syrup 1 egg 1 tablespoon vanilla extract 1/4 cup melted coconut oil bee pollen, to top

PREPARATION: 1. Heat oven to 350 F. Brush each muffin tin with coconut oil. 2. In a medium bowl, combine maca, spirulina, matcha, almond flour, coconut flour, coconut sugar, hemp seeds, baking powder, baking soda and salt. 3. In another medium bowl, combine mashed avocado, mashed banana, maple syrup, egg, vanilla extract and melted coconut oil.

4. Slowly add dry ingredients to the wet ingredients, stirring constantly until ingredients are fully incorporated. 5. Spoon mixture into muffin tins, filling 3/4 of each cup. Sprinkle the top of each muffin with around 1 teaspoon bee pollen. 6. Bake for 20–25 minutes, or until a toothpick comes out clean. Let cool for 10 minutes.

Cancer Wellness

ZERO WASTE Confronting cachexia, the “wasting syndrome” seen in many cancer cases, may become easier with promising new drug development. BY TAYLOR NOVAK

Cancer Wellness

ate stages of a disease can often feel just as tumulmolecules that mimic natural peptides with potentially tuous as the earlier days in your journey. New therapeutic activity.” symptoms pop up seemingly every other day, and Endevica Bio’s peptide drug for cachexia has had it can become difficult to find relief and maintain promising milestones throughout its development. If a comfortable quality of life. But when it comes to cachexia, approved, it would be administered as a daily injection. one of the most common and most harrowing disorders in This is noteworthy in and of itself, as the properties of the late-stage cancer cases, some solace may finally be on the drug would traditionally need to be administered directly horizon. into the brain’s cerebral ventricles to have any substantial Also known as “wasting syndrome,” cachexia is an effect on the melanocortin receptors—which is “clearly irreversible disorder that occurs in advanced cases of not practical and quite invasive,” Gruber points out. cancer, kidney disease, heart failure, HIV/AIDS and more. The “drug-like” qualities of Endevica Bio’s treatment, It presents as loss of appetite on overdrive, causing the which combines the low toxicity and high specificity of body to break down its own fat, muscle and even organs. true peptides and long duration of synthetic molecules, Patients are typically diagnosed if there is a 5 percent loss allows a more straightforward and non-invasive approach of body weight over 12 months. that is ideally as effective. Once the melanocortin recep According to the American Cancer Society, up to 50 tors are successfully blocked, a person with cachexia can percent of all cancer patients may experience this disorder begin gaining weight again—a feat virtually unheard of to a degree, leading to complications with treatment and previously. well-being—and little opportunity for respite. It might sound like a success story that’s too good “At one time, cachexia was thought to be simply a to be true, but Endevica Bio has research funded by the disease produced by a lack of appetite in a small number National Cancer Institute to prove it. A veterinary hospital of patients,” explains Dr. Kenneth Gruber, founder and study of the drug in client-owned dogs with life-threatenchief scientific officer of biotech company Endevica Bio. ing cachexia showed “reversal of body weight loss, comThanks to new research, however, the bined with reports of increased physical understanding of cachexia has evolved activity, and enhanced quality of life.” to recognize the large demographic it There were also no drug-related affects, the metabolic relation to cancer adverse effects, and some dogs even Up to 40 percent of and its deadly outcome. continued on the drug for expanded use According to Gruber, up to 40 of over one year. Gruber says this has cancer warriors will percent of cancer warriors will die from given the company confidence as the die from cachexia. cachexia. Endevica Bio hopes to offset drug heads into human clinical trials. this number through the creation of a While Endevica Bio’s primary focus solution for the disorder based in pepis currently cancer cachexia, it hopes tides. Peptides are chains of amino acids that any progress made with the drug held together by bonds within a cell; a well-known peptide in this demographic could also confront other cachexia therapeutic is insulin for diabetes. As Gruber notes, while forms such as those seen in kidney failure or heart failure. the understanding of cachexia has deepened, the options To Gruber, a change in the tide is fast approaching. available for patients with the disorder are still limited. “Not only could [a cachexia treatment] potentially save “There is currently no good drug treatment whose many lives, but it could improve the quality of life of those primary indication is to treat cachexia, which was the basis who are living with cancer,” he says. “Similar to the new for Endevica Bio’s drug development efforts to produce era ushered in by immunotherapies, we truly believe that an anti-cachexia therapeutic,” says Gruber. “Currently, if we can treat cachexia effectively it can be a major revoluhealth care professionals focus on maximizing nutrition tion in cancer treatment.” and exercise in an attempt to limit weight loss and main tain muscle mass. The use of appetite stimulants and steroids are common, but these therapies don’t address the core problem—hence the high death rate.” The core problem, Gruber says, is the hypermetabolic state of the body when faced with certain diseases. In cancer, metabolism may speed up—meaning a warrior already struggling with loss of appetite from disease or treatment will have a difficult time meeting the demands of a hyperactive metabolism. To Endevica Bio, the answer lies within peptides, specifically melanocortins. These are peptide hormones within the neural system that are responsible for controlling body weight and other functions. “The previous attempts to develop melanocortin drugs resulted in ones with cardiovascular side effects,” Gruber explains. “Endevica Bio has patents that can suppress these cardiovascular side effects while enhancing Visit endevicabio.com for more information on the company’s anti-cachexia effects. Many drugs are totally synthetic cachexia research. Cancer Wellness

mind 28 BRINGING SEXY BACK 30 WHAT COMES NEXT 31 STATE OF THE ART

body

Painting by Lida Sherafatmand

BRINGING SEXY BACK Getting in the mood can be difficult after treatment, but it doesn’t need to be. Slow and steady steps in rediscovering your sexuality can make all the difference. BY TESS DEVÈZE

hat if I told you that recovering our sexuality after cancer treatment is not only possible, but also simple? I’ve been working in sexuality long before I was diagnosed with stage III breast cancer at age 36. Many of the people with cancer that I support ask, “How can I reconnect with my sexuality?” The way we feel about ourselves, our body confidence and our desire for intimacy all play a crucial role in our happiness and well-being— and they all take a hit from cancer treatments. It makes sense that we disconnect from ourselves due to treatments because we’re poked, prodded and stared at while experiencing pain, fatigue and so much more.

So, how can you start to feel better about your new and changed body, to feel desirable again and even begin to want intimacy and touch? The first step is to take small, day-to-day actions that increase those moments of feeling good. Here are a few practical ways to start: • Write down a few things that make you feel good, like helping others, self-pleasure, baking or taking a bath. Try to include more of these things in your daily routine. • Avoid media that might make you feel deficient or undesirable, such as Instagram or beauty commercials. • Remember to grieve. You may be feeling the loss of many aspects of your life that you previously enjoyed. Share your struggles with friends, have a cry, chat with your partner about how you’re feeling or find a counselor. You don’t need to do this alone. • Take new photos of yourself and replace your old “pre-cancer” pics to avoid constant reminders of the past. • Try to exercise and eat well. I know it’s hard, but it really can improve how we’re feeling day to day. Even just replacing one sugary snack or taking a short walk each day can make a difference. These small actions might seem trivial but the effects on how we feel about ourselves can be gigantic. 28

Cancer Wellness

Second, reintroduce pleasurable touch. Most of my clinical experience and training is in neurological rehabilitation—believe it or not, our main sex organ is in between our ears, not our legs! Often, the best way for us to reconnect with our sexuality is through simple brain training known as “neuroplasticity.” Here’s how this works: Imagine your positive connection to your body is like a bicep. When we go to the gym, we exercise that muscle regularly and it gets bigger. When we don’t exercise, the bicep gets weaker and smaller. This is exactly how it works for the neural connections in our brain and the pathways that connect our brain to touch, pleasure and arousal. When we disconnect from ourselves due to treatments, our sensations, desire and feelings of pleasure start to lessen. Essentially, we need to exercise our “pleasure pathways” over time to keep them strong. Here are some ideas: • When you’re in bed and about to go to sleep, touch your body softly and slowly, just for the sake of it. You could even fall asleep with your hand resting over your vulva or chest. Having touch and connection on your body that is gentle and enjoyable shifts your neural wiring from thinking you’re an object for medical touch to being a body designed for pleasure and affection. • Kiss your partner for the sake of it—without expectations that it will lead to sex.

Set a timer for two minutes and take turns in receiving something you ask for (a foot massage, words of love, soft kisses on the neck, stupid dance performances, featherlight inner thigh touch – yum!). When the timer goes off, stop and allow the other person two minutes for what they want. It’s fun and it has a time-limit so if you get self-conscious, you know the timer will call things to halt. It’s an amazing way to learn about your changed body, to connect with people and baby-step yourself towards being sexual to the level that is right for you in the moment. If you want sex but still feel shy or self-conscious about your changed body, that’s OK—you don’t need to have sex naked! You can wear clothes, put a lacy number on, wear a sarong around your waist, turn the lights down low or get intimate in positions that aren’t full-frontal such as the spoon or side-lying position. It’s normal to find things tough, but don’t forget that if you’ve faced cancer, you can do anything. You can rediscover yourself and sexual pleasure after treatment—even if it takes time to get there. By working on these small steps, you may find that you feel more connected to your body and, in turn, experience pleasure once again. Remember to go slow and be kind to yourself. You’ve got this. Further resources on sexuality • Sexuality & cancer resources: ConnectAble Therapies • Two-minute game information: How a simple two minutes saved my sex during cancer treatments.

• Ask your loved ones for hugs, snuggle with them to watch a film or try holding hands.

• YouTube channel on topics of intimacy, sex and cancer: ‘The Intimacy OT: On Sex & Intimacy After Cancer’

• Set aside some time for self-pleasure and self-touch sessions.

• A wonderful guide on dating, and how to navigate nervousness and body anxiety: The Art of the Hook Up

These may seem simple, but even a few minutes of gentle touch a day can result in neurological rewiring. Over time, your brain will remember that it enjoys touch and want it more. You might be wondering, “But what about my sex life?” If you’re considering having sex, you may feel like you have to do everything at once—that if you’re feeling sexual, it has to lead to intercourse or orgasms. It’s a lot of pressure, especially if you’re not ready for sex yet or feel nervous about your body. The good news, however, is that many sexual activities don’t necessarily need to lead to intercourse. A great way to gently reconnect with your sexuality is to play the “two-minute game.” I learned this game from the sexuality educators Curious Creatures, but it’s also championed by other sexuality experts, including Georgie Wolf in her amazing dating book called “The Art of the Hook Up.” I’ve been playing this game long before my diagnosis, during treatments, and I still play it to this day. It’s been instrumental in my own recovery.

• Sexuality and self-development workshops, podcast and more: Curious Creatures

Tess Devèze has been working in sexuality as a sexuality occupational therapist, certified somatic sexologist and sexuality workshop educator for nearing a decade. After being diagnosed with breast cancer and experiencing firsthand the impacts treatments have on our sexuality, Tess moved her focus to work in oncology to support other survivors on this oh-so-important and often ignored topic. You can find Tess at “ConnectAble Therapies.” Cancer Wellness

What C omes Next Supporting a child going through cancer isn’t always easy, but there are ways to help. Cancer coach Mirela Kopier explores how to navigate this uniquely difficult situation.

nowing there are so many children battling cancer is heartbreaking—but a reality. According to the Centers for Disease Control (CDC), cancer is the second leading cause of death in children ages one to 14, second only to accidents. Facing a childhood cancer diagnosis is a uniquely unfair and gut-wrenching experience. Is it horrible when your grandma is diagnosed with ovarian cancer? Yes. It is certainly painful to witness a new mom being told she has breast cancer and can’t nurse her newborn due to chemotherapy treatments. It can feel surreal to hear that your brother who hasn’t smoked a day in his life and competes regularly in triathlons has lung cancer. But to see a child who has only experienced a few years of life be given a cancer diagnosis, however, is simply heartbreaking.

So, what can we do? I believe the answers come from exploring research. From cutting-edge treatments to nutrition and preventive care, taking care of the children we love during their battle requires all hands on deck. It is important to think about what we can do in advance to lessen the likelihood of diagnosis. According to Nemours, an East Coast nonprofit pediatric health system, keeping kids hydrated is a high priority for those who are battling cancer and side effects of treatment. Not only does staying hydrated help with the loss of water from vomiting and diarrhea, drinking plenty of water helps with bodily functions like flushing out toxins and maintaining body temperature. While I cannot be a mom, I have seen firsthand how a parent can struggle with effectively nourishing their children when they are sick. It can be hard not to give their child anything they want. I urge parents to check with their child’s doctors before starting any nutritional program. It is imperative to fill your child’s nutritional needs during and after treatment. According to Stanford Children’s Health, protein and more calories are often needed for children with cancer. Protein not only helps kids grow, but it helps the body repair itself. Just remember, protein comes in many forms and some are healthier than others. Always opt for organic, non-GMO meats and protein substitutes. Organic meats should not have the added hormones or antibiotics that other meats may have. Organic peanut butter or legumes are great protein substitutes that will not have the added pesticides and preservatives other non-organic options may have. You should always read the labels thoroughly before you decide. My hope is that we can see a decrease in childhood cancers in our lifetime. I believe that is possible with the support of organizations raising awareness and funds to improve research. I am the co-chair of the 2022 Leukemia and Lymphoma Society’s Man and Woman of the Year campaign in Chicago. This campaign raised almost $1 million for cancer research this year, and we hope to surpass our goal of $1.25 million next year. All of this research is conducted with one goal in mind—finding a cure for cancer. I am proud and humbled to be part of this organization, and I know so many of you are fighting for the same cause. I pray no parent has to witness their child battle cancer, but I am certain we are close to lessening that possibility. Stay well and enlightened until next time.

Cancer Wellness

Photos by Sarah Bell

BY MIRELA KOPIER

STATE OF THE ART

Health care settings with meaningful artwork have reported improved patient experiences. Iranian painter Lida Sherafatmand is working to ensure that such settings become the norm.

Provided by Nadege Alezine

BY TAYLOR NOVAK

hen it comes to supporting the cancer comor refresh our minds for dealing with crises,” says munity, everyone has something to offer. For Sherafatmand. artist Lida Sherafatmand, it’s her life’s work. The thoughtfulness behind Sherafatmand’s health The Iranian painter has harnessed collection doesn’t go unnoticed. Past studies have shown the powerful influence of art within medical spaces to that artwork in a medical setting has a noteworthy impact benefit cancer warriors and their quality of life. Prints on the well-being of patients. of her artwork have been donated to the clinical trials In a 2017 study in the International Journal of unit at Churchill Hospital, a teaching hospital in Oxford, Qualitative Studies on Health and Well-being, researchEngland, as well as to hospitals and university oncology ers concluded that “although visual art occupies the backdepartments in North Macedonia. ground in patients’ experience of hospitals, it influences “I cannot help with the actual cancer cure, but I can patients’ experience of safety, comfort, time and identity” help rebuild the emotional aspect for dealing with the chalby reducing anxiety and improving hospital experience. lenge,” says Sherafatmand, a long-time donor to the United For Sherafatmand’s work in particular, the feedback Kingdom’s Worldwide Cancer Research organization. from patients is something that will stay with her forever. In the past few years, Sherafatmand’s paintings have “The feedback has been rather positive. Patients do feel a served as a means to explore the gift of comfort for those calming presence with these paintings,” says Sherafatmand. going through extremely distressing situations—both phys“A woman who had a limited time for living—she had a very ical and emotional. While Sherafatmand has never experiaggressive brain tumor—saw the images, these paintings, enced cancer herself, she frequently heard about new cancer and she asked if she could have the prints and told her sister cases nearly every week and wondered how she could help. to tell me that these images have brought peace to her heart. Sherafatmand is certainly no stranger to the afflictions This was very valuable to me.” that harrowing experiences can have on us. At a young age in Patients aren’t the only ones appreciative of the soothIran, Sherafatmand was forced to face the growing familiaring imagery. “Hospitals can be intimidating places and we ity of a war-torn country experiencing a are always looking for ways to improve revolution. As a refugee in Malta later patient experience. An important aspect of on, she grew to understand the grief this is the atmosphere on our clinical trials of a lost identity and hardships beyond ward,” said Sarah Blagden, the professor “Although visual art her previous perceptions. It’s because who leads the Churchill Hospital unit, in a occupies the backof those moments that she has set her press release. “We are very grateful to Lida sights on extending a hand to others. for kindly donating her beautiful artwork.” ground in patients’ “I lived a life full of challenges,” Sherafatmand is in constant collaboration experience of hossays Sherafatmand. “All of those with the institutions she has donated her destabilizing events always made me paintings to thus far. The positive response pitals, it influences look for somewhere that I feel is a safe from patients and professionals that she’s patients’ experience environment. When a plant had come received in conjunction with previous supout with a little flower or I’d see a new portive data has encouraged even more of safety, comfort, drop of water, I would imagine that I formal research into the effects of artwork time and identity” was living in that spot, because it is so in a health care setting and has made the serene and nice and tender and procase for further investment in such art. She tected. Nearing my adult life, I noticed hopes the impact only grows from here. that flowers do offer that space to us “If there is more formalized proof humans if we give a bit of a time to notice them.” for it, maybe more hospitals will welcome having art And notice the flowers Sherafatmand does. Her fine art pieces in the patients’ rooms instead of just a blank wall,” paintings burst with them, to an almost abstract degree. But says Sherafatmand. her process is more than simply creating pretty flora on a canvas. “Every flower has a specific healing quality, in terms of the effect it would have on our emotional state—for example, lavender can help a little bit with the feelings of depression, or hopelessness, things like that,” Sherafatmand explains. “I know it doesn’t work on everyone, but I tried to symbolically match the healing quality of the flower within the painting that I’m creating.” Sherafatmand takes it another step further in her health collection for cancer warriors. She binds nature and science together in her work to create what she deems a realistic balance of one’s situation. Through the addition of a DNA strand or the illustration of the power of a cell’s nucleus, this fluidity between creativity and intelligence offers what Sherafatmand calls an “abundance” of energy View Lida Sherafatmand’s artwork at lida.gallery. For inforand force to get through difficult times. mation on acquiring copyright-free prints and free reproduc “It’s this artistic movement which brings together tions of Sherafatmand’s paintings for health care settings, visit nature and fantasy as a way to enlarge our mindset lida.gallery/health. 32

Cancer Wellness

ASK THE DOCTOR

For the pediatrics issue, we spoke to Rochelle Bagatell, M.D., the solid tumor section chief at the Children’s Hospital of Philadelphia and a pediatric oncologist with a special interest in the treatment and future of neuroblastoma. Bagatell, who has also partnered with United Therapeutics on its Braving NeuroBLASToma campaign, says the outlook for neuroblastoma patients is better than ever. BY BRITT JULIOUS

WHAT DOES YOUR WORK ENTAIL AS A PEDIATRIC ONCOLOGIST? My own work has two sides to it. When I’m wearing my doctor hat, I see patients in the clinic and in the inpatient unit, primarily children with neuroblastoma. And among that population, I see a lot of children with high-risk neuroblastoma, so children who need a lot of intensive therapy in an effort to try to cure them. We’re not always successful with that. Another substantial population I take care of is children with relapsed disease. And then my other hat that I wear is running clinical trials, because we always want to be moving the field forward and finding new treatments that are less toxic and more effective for kids with this disease. WHAT SORT OF CLINICAL TRIALS ARE YOU CURRENTLY WORKING ON RIGHT NOW REGARDING NEUROBLASTOMA? There are a number of clinical trials that are relevant to children with neuroblastoma and they range from the most cutting-edge, dose-finding studies for brand new agents to studies that are a little bit larger and trying to evaluate if a promising new drug looks like it’s got activity. And then large, randomized phase III trials to try to figure out if our newer approaches are better than what we used to do years ago.

Photo provided by Rochelle Bagatell, M.D.

WHAT SORT OF THINGS DO PEOPLE NOT KNOW OR UNDERSTAND ABOUT NEUROBLASTOMA AS A DISEASE? Neuroblastoma, first of all, is not a brain tumor. Despite the fact that its first name is neuro, it’s typically not in the brain and the majority of children have disease in their abdomen. Sometimes, it spreads to other parts of the body, specifically the bone and bone marrow. Around 90 percent of kids are diagnosed by the age of five, so it’s really a disease of young children.

THERE HAVE BEEN DRAMATIC IMPROVEMENTS OVER THE LAST 20 YEARS WITH NEUROBLASTOMA. CAN YOU EXPLAIN WHAT HAS CHANGED? When I started out as a trainee and as a new faculty member, we would sit families down and say survival rates for children with high-risk neuroblastoma are around 25 percent. Now, we sit down with families and we still don’t tell them a number that they want to hear. But we tell them that just over 50 percent of children diagnosed with high-risk neuroblastoma today will survive. It’s still unacceptable, but certainly it’s better than it was years ago. WHAT DO YOU SEE AS THE FUTURE OR THE NEXT WAVE OF TREATMENT FOR NEUROBLASTOMA? We’re really trying to use our understanding of neuroblastoma biology to try to refine our therapy. And so the more we can understand about vulnerabilities within neuroblastoma cells, the more we can tailor treatment so that kids get what they need, but not what they don’t need. We always wonder with these many components of therapy [if] all children really need that high-dose chemo with stem cell rescue, or are there some kids for whom we could give a more targeted approach and potentially avoid some of the more toxic components of our current therapy? That’s kind of the holy grail, and that’s where we’re trying to go.

WHAT KIND OF TREATMENT IS CURRENTLY AVAILABLE FOR NEUROBLASTOMA? There are some children with neuroblastoma who can be cured with observation alone, or with surgery alone, or with minimal low-dose chemotherapy. Those patients are very, very different. Their story is different from the children who have high-risk disease and need a lot of intensive multimodality therapy to try to cure them. There’s a long way to go to improve their outcomes. Currently, we treat them very, very intensively with multi-agent chemotherapy surgery, high-dose chemotherapy, with stem cell rescue, radiation therapy and immunotherapy. Cancer Wellness

beauty

36 FACE FIRST 42 THE PAIN OF PFAS 44 SUPER CLEAN SOLUTIONS

Cancer Wellness

Face First

Cancer affects all of us. There is no one face of cancer, regardless of age, race or sexual orientation. In the latest edition of our cW portrait series, we captured cancer warriors from all walks of life and heard the same story repeatedly: they are stronger now because of what they’ve faced. PHOTOGRAPHY AND WORDS BY SARAH BELL

Domenica Lagunas Domenica Lagunas completed breast cancer treatment in July 2020, meaning she had to face her last few chemotherapy appointments alone due to the COVID19 pandemic. Although survivorship has been emotionally difficult, Lagunas says her new life mantra is “amor por la vida” meaning “love for life.” (Pictured left)

Laura Estrada For Laura Estrada, recovering from surgery and treatment was half the battle. When completing breast cancer treatment in August 2020, she wasn’t sure what to do next. She encourages other survivors and thrivers to “go to a support group, that’s the best thing you can do.”

Jason Chan After surviving throat cancer, Jason Chan, 55, felt that he “mutated into a better human being, like Deadpool.” Chan is a martial arts instructor and restaurateur.

Bella Greer In Bella Greer’s breast cancer journey, she went from being the one everyone came to for help to asking friends and family for help herself. Since her diagnosis in February of 2019, Greer described the last few years as a time of rediscovery and reidentification.

Erika Lojko In October 2016, on the one year anniversary of her late husband’s death, Erika Lojko was diagnosed with breast cancer at the age of 35. The length of her ponytail and the word “resilience” tattooed on her body remind her of what she has been through over the last five years.

Teresa Espinoza When Teresa Espinoza was diagnosed with breast cancer in December 2019, she decided to be vocal about it amongst her family and friends. Espinoza, a Mexican-American, said in her culture it is considered taboo to speak openly about health issues like cancer.

The Pain of PFAS

PFAS are found in everyday products from makeup to food packaging and may increase cancer risk, but the U.S. has fallen short when it comes to protecting consumers from these “forever chemicals.” BY CATHERINE EVES

id you know the same chemicals that keep pizza boxes from getting soggy while toting your dinner from the restaurant to your front door may be the very same chemicals that allow your favorite face foundation to glide so smoothly across your skin? Per- and polyfluoroalkyl substances, collectively referred to as PFAS, are these synthetic chemicals, used in manufacturing a wide array of consumer and industrial products, like fire-fighting foams, non-stick cookware, personal care products (including makeup) and more. These chemicals were made popular by their efficiency in repelling water, heat and grease, but exposure to PFAS has been linked to a multitude of serious illnesses, including cancer. These man-made substances are often referred to as “forever chemicals”—a colloquialism signaling that these chemicals do not break down, but accumulate in the body and the environment. The same qualities that help makeup glide more smoothly on the skin and stay put on the face from morning until evening are what make PFAS chemicals resistant to degradation, leading to the accumulation. “The human body metabolizes most chemicals into different particles so they can be more easily eliminated in the urine or stool, or even be eliminated through the sweat glands,” says Dr. Beverly Goode-Kanawati, a board-certified family practitioner. But PFAS chemicals are not metabolized at all. “In other words, the body is unable to break them down into parts,” she says. “It can take anywhere, depending on the type of PFAS chemical, from several days up to over 15 years for the body to eliminate them.” PFAS chemicals have been in use since the 1940s, but it wasn’t until 20 years later that reports were first published indicating PFAS exposure can cause a host of negative health effects. The Environmental Working Group (EWG) published a timeline chronicling the history of PFAS in the U.S., indicating that the first scientific study related to PFAS occurred in 1950. This initial study revealed that PFAS accumulates in blood, but at the time, not much was explained beyond that. A decade later, in 1962, the first human study found that volunteers who smoked PFAS-laced cigarettes came down with “polymer fume fever,” which causes flu-like symptoms and acute lung injury. Various studies in the decades following revealed that PFAS negatively affect internal organs, including the liver, lungs and kidneys, and a 1981 animal study found that PFAS will damage a

developing fetus. Cancer was first linked to PFAS exposure a few years after that, in 1989, with a 3M study that found elevated cancer rates among PFAS workers. In 2021, it is well-known that PFAS chemicals are the culprit of a wide range of life-altering diseases and other health effects such as liver damage, thyroid disease, cancer and infertility. According to Goode-Kanawati, at least 12 PFAS chemicals have been studied. “Since these chemicals create oxidative stress, which is a contributor to cancer formation and are known immunosuppressive agents, the risk for cancer overall is increased,” she says. The immune system is responsible for eliminating cancer cells in the early stages of disease, and if the immune system is compromised, the body may not be able to recognize and go after cancer cells, Goode-Kanawati adds. According to the Agency for Toxic Substances and Disease Registry (ATSDR), an offshoot of the Center for Disease Control, there is evidence that PFAS exposure may reduce infectious disease resistance, though more research is needed to better understand this link. The PFAS page on the ATSDR’s website was last updated in June 2020, and says: “At this time, scientists are still learning about the health effects of exposure to mixtures of different PFAS.” Goode-Kanawati also says PFAS exposure leads to an increased risk of testicular and kidney cancers, with newer studies showing increases in non-Hodgkin lymphoma as well as ovarian and pancreatic cancers. “Some studies also show an increased risk of breast cancer, and if there is a family history of prostate cancer, there is an increased risk of prostate cancer,” Goode-Kanawati says.

Due to these myriad health effects, eight chemical manufacturers agreed to stop making two of the more ubiquitous PFAS chemicals in 2015, according to a New York Times article. Their replacement has a different chemical structure, but they also accumulate in people’s blood, and “may prove just as toxic,” the article states. One of these replacement chemicals is called GenX, which was marketed as easier to break down in the environment as it has six carbon molecules instead of eight, according to Goode-Kanawati. “These chemicals have now also been found extensively in air, food and water in different areas of the world and the U.S.A.,” she says. Unfortunately, there has been very little research on the health effects of these new chemicals. Despite the public becoming increasingly aware, “forever chemicals” are still being used today around the world. Though many countries—including Australia and New Zealand—have restricted the use of PFAS chemicals in recent years, they are far from being banned outright. In late 2019, Denmark banned the use of PFAS chemicals in food packaging, becoming the first country to do so. Many other European nations are following suit. In October 2020, the European Union (EU) published a strategic outline with an aim to “boost innovation for safe and sustainable chemicals” while protecting its citizens and the environment. It’s a significant step in eliminating PFAS from European society and their environment entirely. It’s no surprise that the U.S. has fallen short of cosmetics-related safety standards—a subject that frequently shows up in the pages of Cancer Wellness. The EU has banned or restricted the use of more than 1,300 chemicals in cosmetics and personal-care products, versus the approximately 11 banned by the U.S. under the same parameters. Fortunately, things may soon be changing. This past June, U.S. Senators Susan Collins of Maine and Richard Blumenthal of Connecticut introduced to Congress the “No PFAS in Cosmetics Act.” The revolutionary act would ban cosmetics products from including PFAS chemicals as an ingredient (whether or not the old formula listed a PFAS as an ingredient on the packaging), affecting products such as makeup, moisturizer and perfume. The Act’s announcement followed the release of an alarming new study published in the journal Environmental Science

& Technology Letters (ES&T Letters). The study surveyed 231 makeup products from well-known brands in the U.S. and Canada, of which 52 percent were found to have high levels of a marker for PFAS substances. In an email exchange with her press team, Collins spoke about the imperative to mitigate PFAS exposure through daily use of personal care products: “Americans should be able to trust that the products they are applying to their hair or skin are safe. To help protect people from further exposure to PFAS, our bill would require the FDA to ban the addition of PFAS to cosmetics products.” In the ES&T Letters study, the most offending makeup products were foundations, waterproof mascara and lipsticks marketed as “long lasting.” Similar to how PFOA, the chemical once used in Teflon cookware, allows the smooth transfer of a fried egg from pan to plate, PFAS chemicals are used in makeup products to make their application smooth and long lasting. What’s worse—according to CNN Health, “The study found some 88 percent of the tested products failed to disclose on their labels any ingredients that would explain those chemical markers, even though that is a requirement of the U.S. Food and Drug Administration.” It’s difficult to avoid PFAS exposure without proper legislation and governmental oversight, but GoodeKanawati describes simple methods for the average consumer to limit their contact with these dangerous chemicals. “It is important to obtain a water filter that can remove these chemicals, especially for drinking water, though they can be absorbed through the skin even with showering.” She also recommends an air filter, especially in bedrooms or other rooms that see a lot of activity, as PFAS chemicals are also airborne. And until the U.S. follows in the steps of Denmark, where PFAS chemicals are outlawed in food packaging, it’s best to stay away from preheated packaged foods, like microwave popcorn. The “No PFAS in Cosmetics Act” is a step in the right direction to reduce the negative health effects of PFAS exposure for the American people, but until we can guarantee consumer products are free of these particular types of carcinogens, our advice might sound familiar: do your research, read your labels, be wary of misleading marketing and keep a cool head by recognizing that in following these steps, you’re doing your best to keep you and your family safe.

Cancer Wellness

Super Clean Solutions

There’s no such thing as being too prepared for winter! Soak up self-care with a splash of summer when using these beauty picks that’ll leave your skin and hair hydrated and hopeful. REVIEWED BY CAYLEI VOGELZANG

EVOLVH ULTRAREPAIR RECONSTRUCTING MASQUE

Hair in serious disrepair may find a new champion in this novel product. Heavy hitting amino and fatty acids help tame and repair super stressed tresses, leaving the hair moisturized without being heavy. The refreshing grapefruit aroma complements the uplifting, nurturing formula.

MARA ALGAE ENZYME CLEANSING OIL

This cleansing oil is outstanding for sensitive skin. Gentle cleansing is possible by way of natural enzymes found in fruit (pineapple, grapefruit, pumpkin and papaya) mixed with MARA’s signature algae blend which is chock-full of marine botanicals. The resulting oil is great for removing makeup and ideal for pre-makeup prep. AVAILABLE AT CREDOBEAUTY.COM, $58

Photos by Sarah Bell and Jade Mainade

AVAILABLE AT EVOLVH.COM, $48

KHUS & KHUS BLEU BODY SERUM

This dreamy concoction relies on the riches of the botanical world coupled with the ayurvedic principle of bringing balance to the body. The light scent of blue tansy oil comes through upon application along with a perfectly balanced dose of hydration. Use on dry skin or as a lovely post-bath indulgence. AVAILABLE AT KHUS-KHUS.COM, $85

LUXE BEAUTY LUXE LOTION

This multi-purpose hydrator is suitable for use on the entire body and face. Prominently featuring hyaluronic acid— which binds to water to help the skin retain moisture—the formula is rich without being greasy and absorbs quickly, leaving a sweet and youthful scent. While several scent options are available including grapefruit, coconut and unscented, true vanilla lovers like me will go gooey over their indulgently concentrated vanilla concoction. AVAILABLE AT LUXEBEAUTY.COM, $39.95

Disclaimer: This is not medical advice. The products and their descriptions are written from the perspective of their author, Caylei Vogelzang, who makes no claim other than to her opinion. The section is meant for entertainment purposes only and reflects the sole opinion of its author.

Cancer Wellness

Complementary Medicine

48 BUZZED AND BAKED 51 THE POWER OF PLAY

Buzzed & Baked If you’re looking for something beyond a simple sugar high, cannabis confections have you covered.

Photos by Sarah Bell

BY LESLIE T. SNADOWSKY

Cancer Wellness

ez Get Baked, a female-owned and -operated, “We approach it from a place of luxury,” says Taryn LGBTQ-friendly bakery in Phoenix, sells gluGarcia, Black Dahlia’s head chef and product lead. “There ten-free, gourmet, vegan and custom desserts is a lot of care and love and time we put into our confecincluding blueberry coffee cakes and crumbles, tionery and chocolate work.” cheesecakes and walnut Bundt cakes and cookies. Garcia and Chef Greg Bernhardt’s joint efforts refine the Upon request, an indulgent ingredient—20 mg of hempLos Angeles label’s research and product development, incorbased nano CBD-infused upgrades—is baked into the treats. porating sustainably cultivated CBD derived from all-natural, “Quality is our focus as a business,” says owner broad-spectrum hemp oil into their artisanal confections. Kaleigh Marks. “You can make really good money selling Garcia says their European-style CBD gelées, available in baked goods with cannabis, but I’m in it to offer natuelderflower and prickly pear or white peach and strawberry ral-based products with health benefits. I’ve had people lemonade, melt in your mouth with a jelly textual experience. come in and ask specifically for products for family “CBD is a difficult flavor profile to work with, but chocmembers struggling with cancer or other ailments.” olate is one of those things that pairs with it quite beauti Dr. Joseph Rosado, chief medical officer at fully,” says Garcia of their grand cru, peppermint crunch MarijuanaDoctors.com, credits cannabis edibles with alleviand sea salt caramel CBD bonbons that are all-natural, ating vomiting, nausea and appetite loss caused by chemothervegan, gluten-free, THC-free, non-GMO and alcohol-free. apy, and the potential of cancer prevention and cancer treat Black Dahlia’s founder and CEO, Daniel Young, Ph.D., ment through antioxidants. Medical content on his site asserts says his proprietary nano-technology distills the overall that the active cannabinoids in marijuana can restore your biological availability of active components of CBD prointernal endocannabinoid system (ECS) that is responsible viding his CBD-infused products with rapid absorption for keeping critical biological functions balanced. They can and efficacy and an unmatched experience that’s entirely also “stimulate the apoptotic pathway in cells,” or stop cancer restorative, effective and safe. cells from maturing by signaling cancerous cells to die. “Our products are designed for micro-dosing,” says The Centers for Disease Control and Prevention doesn’t Young. “Our gelées, bonbons and lollipops contain 20 mg discount cannabis’ salubrious effects of CBD, and you usually feel the full effect on chemotherapy, but asserts “there in one to two hours.” BDSA, a leading provider According to Rosado, if edible cannabis is not enough evidence to recommend patients inhale or ingest marijuana as a products are absorbed gastrointestinally, the of global cannabinoid treatment for cancer-related symptoms effects are delayed but provide longer periods industry market research, of relief than if you smoked marijuana. If or side effects of cancer therapy.” Marks’ boutique bakery and its absorbed orally, like Black Dahlia’s sugar-free predicts global cannatheoretically therapeutic sweet treats lollipop line, effects are felt almost immediately bis sales will grow from are on-trend with similar businesses but dissipate more quickly. THC edibles can $21.3 billion in 2020 to jonesing for their piece of the pie. provide up to 12 hours of euphoric sensations. BDSA, a leading provider of But a legal haze casts a shadow on mar$55.9 billion in 2026. global cannabinoid industry market keting, packaging and selling pot pastries. research, predicts global cannabis Recreational marijuana is legal in only 19 sales will grow from $21.3 billion in 2020 to $55.9 billion states, Washington D.C. and Guam. in 2026. It found 70 percent of cannabis consumers ate “Each state’s regulations differ and are changing edibles last year and 45 percent tried baked goods, with rapidly,” says Suzette Toledano, a New Orleans intelleccookies and brownies rising to the top of the menu. tual property attorney who has combined her music prac Bakeries around the nation are using cannabinoids tice with cannabis, providing counsel for Willie Nelson’s like CBD (cannabidiol), a non-psychotropic botanical cannabis companies Willie’s Reserve and Willie’s Remedy. extracted from hemp plants, and THC (tetrahydrocan“The best way to be in compliance is to retain an attorney nabinol), the primary psychoactive compound found in familiar with cannabis regulations and to keep a reserve marijuana, to blend into their bonne bouches. These of funds ready in case changing regulations require the goodies may make you feel buzzed and, according to purchase of special equipment or additional testing.” MarijuanaDoctors.com, THC and CBD can provide relief “It would be easy if cannabis products could be labeled for anxiety and depression, arthritis, autoimmune disorlike salsa: mild, medium or hot,” says Toledano. “Instead, ders, cancer and chemotherapy, chronic pain and more. each state has its own labeling requirements. And aside Customers wait in hour-long lines to satisfy their munchfrom state regulations, the FDA has jurisdiction over ies on Wake-n-Bakery’s dessert delights and drinks made with ingestibles. Marketing using health claims is prohibited.” Delta-8 THC. Sweet Grass Kitchen in Denver infuses THC in To be blunt, navigating the circuitous cannabis its popular key lime pies and uses cannabutter in its cookies; landscape can make you feel stoned, so why not whip up Big Pete’s Treats in Santa Cruz, California offers a line of some dope delectables at home? Multiple books and webmini-cookies infused with either indica or sativa cannabis sites offer DIY recipes, including those of Chicago-based varieties; and Purple Reign in Atlanta sells items like CBDJames Beard award-winning pastry chef Mindy Segal. Her infused cookies, cupcakes and frozen cookie dough. seasonal kale salad with citrus-glazed butternut squash, As bakers capitalize on rehashing nostalgic themes, baked brie en croute with cherry compote and cranberry Black Dahlia showcases an upscale collection of elevated bread pudding with citrus eggnog custard are paired with edibles, including velvety gelées, chocolate ganache her exclusive line of “deliciously dosed” gummies and bonbons and stimulating lollipops. chocolates that contain 2, 5 or 10 mg of THC apiece. Cancer Wellness

J O I N T H E V E T E R A N S A S B E S T O S S U P P O R T G R O U P Veterans make up nearly 30 percent of mesothelioma cases in the U.S. Once known as the “miracle mineral,” asbestos was used for several reasons in military life, including battleship construction and insulation in military housing. We are so grateful for the service of our veterans, and we remain committed to advocating for them. If you are a veteran who has been diagnosed with an asbestos-related disease due to your military service, we encourage you to visit our website and join our Veterans Asbestos Support Group. Offering honor through support. Join today: www.veteranswithasbestos.org

www.vogelzanglaw.com 872-244-6847

V O G E L Z A N G L AW

the power of play

In the face of rigid societal roles and expectations, like masculinity, your authentic self can become overshadowed and lost. But you owe it to yourself to stay true to your inner identity, cultivating it free of performative constraints. BY ELIZABETH TUCKWELL

have to admit that when I began writing this article, I felt slightly hypocritical. I couldn’t even remember the last time I just played. I, like so many adults, had become overworked and overscheduled. I had overglorified busyness and assigned moments of free time to spiral down a path of Instagram stories instead of truly having fun.

Play was the opposite of what I was doing. Then something magical happened: an afternoon dash to the park with my 10 year old showed me what I had been missing—ridiculous, sensational joy. She invited me to join her on the slides and swings and when I did, I began to feel butterflies in my stomach and noticed a winsome smile spreading on my face from ear-to-ear. I was illuminated from the inside out, feeling bliss in a way that I hadn’t in an eternity. I genuinely walked away from the park that day feeling like a whole person. What I felt that day was the simple pleasure that we all have access to, but have forgotten to experience: the power of play. We watch children discover themselves through this art form, from bouncing and squealing as infants to elaborate imagination games as young kids. Playtime allows children to develop important life skills such as empathy, resilience and creativity in addition to allowing vast amounts of cognitive processing. Why should that end in childhood? Most of our adult world revolves around schedules, solving daily challenges and using our logical minds to maintain the infrastructure of our lifestyles. As adults, we forget that unscripted fun is intrinsically linked to our development. Playtime allows us to process our experiences, sharpen our minds and continue our social and emotional development. Play relieves stress, produces endorphins and enables us to let go of our need for control. We can relax into the present moment, giving our brains a break and our hearts a chance to leap out of their scheduled cages and roam free. In my life, I had been displacing play with a bulleted list of scheduled events, slowly putting the joy to sleep. I had replaced fun with productivity and substituted play-released dopamine with the mundane gratification of an accomplished to-do list. There in the park on those gravity-defying play structures, I began to rediscover the lost power of play. I realized that I needed to reprioritize my relationship with play and include it in every day.

To do this, I have begun to follow the same rule I apply to my diet: 80/20. Eighty percent of my day can be allocated to the logical to-do list structure, but 20 percent is now intended for “play.” I realized if I was serious about personal playtime, I had to schedule it. It is ironic, but realistic. To make a lasting change, it is important to create space for it. Putting it on my schedule did that. I also recognized I had to rediscover the part of me that wanted to play and how I defined fun. I consulted an old friend—my imagination—and together we created a list of all the activities I would LOVE to do if I had no other obligations, allowing my ideas to flow unrestricted. My list included sports, art events, travelling and “new experiences in general.” That first week, I devoted 15 minutes of each day to activities on my list. I also added time on the weekends to try new experiences in the city. The results have been outstanding. I feel like a new person. I have had more aha moments than I can count; I have tested the waters of my courage and have grown enormously trying new things. I feel that my world is whole as I am engaging in living my life instead of just scheduling it. If you are ready to add play to your day but don’t know where to start, consider the following ideas: 1. Set a reminder on your phone for a specific time each day and label it “Play Time.” Allocate this time to doing something you enjoy and is just for you. 2. With pen and paper in hand, grab a cup of coffee and invite your imagination to sit with you. Write out 10 fun things you would do today if you had nothing else planned. 3. Divide that list into 15-minute, 30-minute and 60-minute+ sections. 4. Using your favorite scheduling tool, place the 15-minute activities on your calendar during the day when you can give yourself 15 personal minutes. Spread out the longer activities at least two times per month. At this point, you should have a dash of play sprinkled into every day, with bigger play activities scheduled through the months. 5. Stay committed to yourself. Remember this is for fun; it’s not another job. You deserve to have fun— every day. Cancer Wellness

Around Town

54 CANCER IN COURT 56 FLAT IS BEAUTIFUL 58 RAISE A GLASS 59 TURNING TOWARD THRIVING

Cancer in Court Cancer initiatives can sometimes seem left behind in legislation, but advocating for new policy is still one of the most promising practices in the worldwide fight against the disease. Here are four recent proposals to support that aim for real change at the U.S. legal level. BY TAYLOR NOVAK

Cancer Wellness

egislation is one of the biggest ways to take action against cancer, both nationally and globally. Putting policy in place to further expand research, coverage, patient protection and more is one step closer to lessening the burden of cancer for all. New milestones are being met every day with health legislation and cancer, but there are many more to meet. We’ve rounded up the more recent promising uses of law, including proposed plans for you to support and resources for you to utilize in the legal fight against cancer.

FEDERAL ADVANCED RESEARCH PROJECTS AGENCY FOR HEALTH In a bipartisan move at the federal level, U.S. Representatives Republican Fred Upton and Democrat Diana DeGette drafted in June 2021 legislation to create a Federal Advanced Research Projects Agency for Health (ARPA-H). Prior to this draft, the White House requested $6.5 billion in the same month to fund ARPA-H. The agency’s concept was first proposed by the Suzanne Wright Foundation, a nonprofit driving action against pediatric cancer. ARPA-H would utilize federal resources, from funding to technology, to develop and deliver cures for deadly diseases like cancer, Alzheimer’s and more. The agency would focus on research that is goal-oriented with tighter time constraints than seen currently with the country’s traditional approach to health initiatives. Propelled by the COVID-19 pandemic and rapid development of vaccines, ARPA-H values collaboration and innovation to solve serious diseases more quickly.

CAL’S LAW Childhood cancer is something you never want to imagine happening, but it is the unfortunate reality for many kids and their families. Illinois nonprofit Cal’s Angels knows this all too well. The pediatric cancer foundation—named after South Elgin 12-year-old Cal Sutter who battled leukemia—grants wishes, raises awareness and funds research. Cal’s Angels has recently brought cancer to the courts with Cal’s Law.

In April 2021, Illinois House of Representatives passed House Bill 2109, requiring Illinois Insurance Code to cover comprehensive cancer testing—including genome and DNA sequencing—for children diagnosed with cancer. After being sent to the Illinois Senate, the bill was passed once again without much debate. It is now awaiting approval by the governor. You can follow Cal’s Law’s status at ilga.gov/legislation.

KIDS TOO If you’re feeling overwhelmed with law lingo by now, you’re not alone. The world of legislation can be intimidating, especially when your involvement is personal. For parents with children experiencing pediatric cancer, Kids TOO can help you navigate the convoluted nature of policy. A collaboration between Momcology, a nonprofit providing peer support for parents of kids with cancer, and the American Childhood Cancer Organization (ACCO), Kids TOO will assist you in advocating for meaningful action. According to ACCO’s landscape analysis, 29 states currently have no mention of childhood cancer in state action plans. By empowering parents with effective strategies to implement childhood cancer language in state cancer action plans and advocate for pediatric cancer research inclusion in state budgets, children with cancer won’t get left behind in health legislation. Learn more about Kids TOO at tfaforms.com/4895048.

ILLINOIS BIOMARKER TESTING COVERAGE Even more recently in Illinois, cancer advocacy groups celebrated another legislation win with the expansion of biomarker testing coverage in the state. Every cancer has a unique set of biomarkers, which are proteins and genes that can provide professionals with more information about the specific case, leading to personalized plans of care. This coverage expansion passed in August 2021, making biomarker testing covered by state-regulated insurance plans and Medicaid for insured Illinoisans with advanced or metastatic stage III or IV cancer. Biomarker testing for cancer progression or recurrence will also be covered.

Cancer Wellness

Flat Is Beautiful Flat Closure NOW advocates and educates in support of aesthetic flat closure.

Photo provided by Meghan Konkol

BY MEGHAN KONKOL

Cancer Wellness

ancer patients must have as much information “I expected to feel shame, but what actually happened as possible to make informed decisions and find was that I saw my higher self staring back at me,” says the best approach for their individual situation Hopper. “I didn’t even notice that my breasts were gone, and body. Unfortunately, many people facing and I just saw a beautiful soul standing there. My breasts mastectomies aren’t provided a full range of choices. aren’t even here, and I’m still a woman, I’m still feminine, Aesthetic flat closure—also known as “going flat”—is an I’m still beautiful.” often-overlooked alternative to options more commonly After this experience, Hopper felt motivated to spread offered such as breast reconstruction with implants or positive messages about going flat to the wider breast autologous tissue. cancer community. She started making “Flat AF” T-shirts According to the National Cancer Institute’s (NCI) and went on to found the “Flatties Unite” Facebook group, Dictionary of Cancer Terms, “during an aesthetic flat which now counts around 3,000 members, and later closure, extra skin, fat, and other tissue in the breast area joined the Flat Closure NOW board of directors. are removed. The remaining tissue is then tightened and Flat Closure NOW director Melissa Jansen was diagsmoothed out so that the chest wall appears flat.” nosed with breast cancer in 2017. She says she knew Founded in 2019, nonprofit organization Flat Closure almost instantly that going flat was the right choice for her NOW supports mastectomy patients before, during and because she didn’t want to further modify her body. It was after a decision to go flat. The organization brings crucial difficult, however, to convince surgeons of this decision, attention to the fact that, in many circumstances, aesespecially as she opted to go half-flat with a unilateral thetic flat closure simply isn’t on the menu when surgeons mastectomy and aesthetic flat closure. present options to women for their upcoming mastecto Some doctors attempt to dissuade women from unilatmies. In fact, one of the organization’s first projects was to eral flat closure with statements about it causing physical advocate for the NCI’s definition of pain or negatively impacting their body aesthetic flat closure in 2020. With image and sex life, which Jansen and the term now officially defined, the many others find untrue. By proudly organization hopes “going flat” will and publicly sharing her experience as In many circumstances, be more widely recognized and a one-breasted thriver on her fashion accepted as a normal and desirblog “I Don’t Need Two,” Jansen aims aesthetic flat closure able surgery result for many people to empower others to be proud of their simply isn’t on the menu facing mastectomies. choice. A key component of the organi When Flat Closure NOW director when surgeons present zation’s work is to amplify real-life Melly Testa was diagnosed with breast options to women stories and images. Flat Closure cancer in 2011, they felt that reconfor their upcoming NOW’s website and social media struction was not the right option for feeds provide a beautiful, honest them. Similar to Hopper’s experience, mastectomies. and informative glimpse into life Testa was told that the alternative was after going flat with photos from the to “do nothing.” When they brought flat community showing a range of up their desire for flat closure, Testa’s body shapes, sizes and colors. The website also features an doctors asked them to see a psychiatrist to justify this FAQ page, a glossary and a brochure with questions to ask choice. surgeons. After personally witnessing a lack of community and “My surgeon presented it to me as: ‘You can have support for their decisions and hearing similar stories implants, you can rebuild the breast mound or you can from others, Testa was inspired to start advocating for flat do nothing,’” says Flat Closure NOW vice president Emily closure as a valid option for mastectomy patients. Their Hopper, who underwent a bilateral mastectomy for triple years of advocacy work played a key role in founding Flat negative breast cancer in 2017. But “doing nothing” wasn’t Closure NOW and ultimately having the term aesthetic flat clearly defined, and the ultimate result could vary widely closure defined by the NCI. “Putting my body out there depending on the surgeon’s approach and experience. and saying this is viable, this is OK, was really important Even in situations when forgoing reconstruction is to me,” says Testa. presented as an option, some surgeons may not provide a Despite being a fairly new organization, Flat Closure completely flat result. Flat denial—when a surgeon leaves NOW has already made big strides in advocating for and behind extra tissue and skin after a mastectomy without empowering the flat community. Thanks to this important reconstruction—is unacceptable for patients specifically work, more and more women are making the best deciseeking flat closure. Official recognition of the term aessions for their bodies and approaching their surgeries thetic flat closure and other advocacy efforts help educate with strength and confidence. the medical community about what result is expected when someone requests it. Connecting with other breast cancer warriors online during active treatment, Hopper learned more about going flat and ultimately opted for this result. After undergoing months of grueling chemotherapy, she saw going flat as the best option for her to heal as quickly as possible and get back to being present and active in her family life. Learn more at flatclosurenow.org. Cancer Wellness

Raise a Glass Cheers to a good cause! Tasting Stars, a premier champagne event, held its 19th annual elegant evening of bubbly delight virtually to benefit A Silver Lining Foundation’s breast cancer screening initiatives. BY MEGHAN KONKOL

“I

f you’re passionate about a cause and want to help, there’s a lot you can do to make a difference,” says Brent Carstensen, a dedicated supporter of breast cancer causes who co-founded Tasting Stars with Charles Edward Stanfield nearly 20 years ago. All proceeds from the annual champagne benefit support A Silver Lining Foundation (ASLF), a nonprofit organization focused on improving accessibility of breast cancer screenings in the Chicagoland area. Regular breast health monitoring is crucial for detecting breast cancer as early as possible. Consistent screenings can result in earlier treatment and better outcomes for those diagnosed. Unfortunately, many individuals face challenges accessing these essential services. ASLF works to address these issues by facilitating cost-free mammograms and other breast health services for those who may not otherwise utilize them. Carstensen and Stanfield co-founded Tasting Stars in 2003 after a chance meeting uncovered their mutual interests in champagne and supporting breast cancer causes. Tasting Stars was born as an event to combine these interests and make a difference in the breast cancer community. To date, Tasting Stars has raised more than $710,000 to benefit ASLF in their efforts to make breast screenings more accessible for uninsured, underinsured and undocumented individuals. The 19th annual Tasting Stars event on June 19 highlighted ASLF’s important work and raised funds to support its mission. The French-themed, livestreamed event celebrated all things champagne, and attendees were able to preorder a curated Taste of Paris menu to enjoy from home while tuning in and supporting the cause. The evening was complete with jazz music and “Charles Talks Champagne” interludes to share wine expertise in addition to a bottle sabering demonstration from Stanfield. ASLF’s CEO and founder Dr. Sandy Goldberg gave a heartfelt talk sharing the foundation’s history and mission and how its services have become all the more important in the current medical and economic landscape. With many individuals losing their health insurance coverage due to job loss during the pandemic, the foundation now supports a new category: the newly uninsured. The need is greater now than ever to ensure that individuals receive crucial imaging and diagnostic services. Imagine, for example, that you just received an abnormal mammogram result and have been scheduled for a biopsy. What if you then lose your job—and your insurance coverage along with it—the week of your scheduled proc dure? With ASLF’s additional focus of supporting the newly uninsured, the hope is to prevent delays and cancellations of these services and to ultimately save more lives. Goldberg shared her own experience with breast cancer, saying that she felt privleged because she had access to everything she needed. On the other hand, she learned that many others were not so fortunate in having their health care needs addressed. ASLF addresses a critical need for improved access to breast health services. Goldberg emphasized these accessibility challenges and explained that ASLF strives to ensure that no one goes unrecognized. “Everyone deserves a chance to survive,” she said. Throughout the evening, messages from the seven host couples in the “Tasting Stars family” thanked attendees for their support. Over the years, the event has grown from a small 40-person gathering to an elegant evening bringing together hundreds of guests to support ASLF’s ever-e sential mission. With plans to return to an in-person format for next year’s 20th edition of Tasting Stars, Carstensen looks forward to continuing the tradition of supporting this important cause. 58

Cancer Wellness

Turning Toward Thriving

Living Beyond Breast Cancer’s virtual wellness summit offers expert advice on nutrition, exercise and more to help you go from surviving to thriving after diagnosis. BY MEGHAN KONKOL

onprofit organization Living Beyond Breast Cancer (LBBC) is celebrating 30 years of serving the breast cancer community. LBBC’s mission is to “connect people with trusted breast cancer information and a community of support,” says LBBC vice president of mission delivery, Janine Guglielmino. LBBC works to share the lived experiences of breast cancer thrivers to foster connections in the community, Guglielmino says. The organization also provides a number of educational programs, including many livestreamed virtual events. LBBC’s YouTube channel offers a wide range of recordings covering breast cancer subtypes, updates on treatments, beauty and fashion tips, fertility preservation and more. On June 16 and 23, LBBC held its two-part virtual Wellness Summit, “Promoting Health: Nutrition and Exercise Essentials.” These presentations covered wellness tips and strategies specifically tailored for the breast cancer community. Rachel Beller, a registered dietitian nutritionist, presented the first installment, “Maximizing nutrition: Do you have these three essentials in your kitchen?” Beller provided practical advice for building sustainable nutrition habits. Her presentation showed how to incorporate beneficial ingredients into everyday meals to manage inflammation, regulate blood sugar and improve gut health. Beller’s straightforward tips can be easily applied to an individual’s current food preferences and habits. Her presentation covered how thrivers can use more fiber, spices and other health-boosting ingredients with specific examples of how to add them to meals. Beller stressed the importance of making simple and gradual changes that

can be sustained over time, in addition to diversifying ingredients, to enjoy long-term health benefits. Oncology exercise specialist Sami Mansfield presented the second session of the summit, “Your body, your fitness: An action plan for exercise.” Mansfield’s tips focused on how thrivers can use physical activities to counteract treatment side effects and build exercise routines to suit their specific situation. Mansfield explained how breast cancer and its treatment can impact various parts and systems in the body. She emphasized the importance of building lean muscle, especially as many breast cancer thrivers experience muscle loss caused by inactivity, chemotherapy and other interventions. Mansfield also provided examples of how thrivers can build a personal exercise plan outlining modalities, locations and intensities that can be adapted to individual circumstances. She also stressed the importance of active recovery, good sleep habits and hydration as part of an overall plan. Simple movement sessions are especially easy to incorporate into a busy schedule. Guglielmino says that the organization strives to find new and creative ways to serve the breast cancer community when and where they need support. She notes that upcoming LBBC programs include a second edition of its “Knowledge is power: Understanding Black breast cancer” series in October and an on-demand digital course on life after treatment, in addition to the LBBC Conference on Metastatic Breast Cancer in April 2022. Recordings and worksheets for the LBBC Wellness Summit are available on the LBBC website. Learn more about Living Beyond Breast Cancer at LBBC.org. Cancer Wellness

Cancer Wellness

Photo by Britney Gill Photography

62 LOOKING FOR THE LIGHT 67 THE THRIVER 69 BRAVING THE BATTLE 71 TALK OFF 72 STORIES OF HOPE

Entertainment

Cancer Wellness

g n i k Loo e h t r fo t h g i L Writer and artist Danielle Doby shares the lessons she’s learned about gratitude, grief and the infinite influence of cancer.

Photo by Britney Gill Photography

BY TAYLOR NOVAK PHOTOGRAPHY BY DANIELLE DOBY

Cancer Wellness

“Y

ou’re too young. It’s just your anxiety.” “In treatment, I experienced profound loneliness and In the two years leading up to her cancer isolation, pain that brought me down to my knees and grief diagnosis, time and time again, Danielle Doby lisso large and unavoidable that the only thing left to do was tened to these dismissive sentences slip through let it all in and feel it,” says Doby. “At the same time, I also doctors’ mouths. Neurologists, family physicians, naturopaths, experienced a joy so untamed it felt like freedom. I moved specialists—it didn’t matter what field; Doby could anticipate a through fears and found how strong I am, and in the year health care professional discounting her lived experience as she of death and pain and choosing sides, I was a witness to searched for answers relating to her well-being. what it really means to live a life beyond yourself—how we “All of my questions continued to be met with pushback are responsible for and to each other as a community.” about my young age, healthy appearance and mental health,” says the 36-year-old Dallas-based storyteller and artist. “I found myself caught in the space between doubting my rela tionship with my body and knowing something wasn’t right.” For young adults especially, a cancer diagnosis can Doby’s grandmother eventually suggested a reiki and present as your flesh and bones’ ultimate betrayal. When craniosacral therapy session. Feeling as though she had in the supposed “prime” of your life, any situation that nothing left to lose at that point, Doby booked an appointsuggests otherwise feels not only unfair, but terrifying too. ment for the healing energy technique. It was during this Doby approaches her cancer journey with grace now, session when a reiki master would stop to hover her hands though this wasn’t always the case. After the immediate over Doby’s sternum, pointing to the right side of her swirling whirlwind following her diagnosis, Doby felt chest, and tell her, “Here. Right here is where you begin.” herself begin to spiral as she took up her new residence At the time, Doby didn’t entirely within the “ecosystem” of cancer. grasp what the reiki master meant. “Everything I had ignored and But when she learned a few months shoved to the side to deal with later later that a mass in her right breast started to resurface on its own terms. “The stories I am was stage 3B triple negative breast It felt like frantically digging your writing now are the cancer, she finally understood. hands deep into the dry earth searching for water,” she explains. “I was stories I have always searching for some sense of ease or wanted to write—and clarity or promise in it all. It was in When Doby was born, her this desperation [that] I suffered.” what a privilege it is to grandmother pulled together Doby’s This feeling of deep discomfort, be alive to tell them.” numerology and natal chart, as was of not knowing what is coming next, her tradition for every member of the is easy to avoid confrontation with— family. When Doby was a teenager, until you no longer have a choice but she came across her grandmother’s journal entries about to face the music and, beyond even that, not just accept it the findings that left a lasting impression. but actively survive it. “She is the one who instilled wonder in me, teaching me “What I ended up learning from this wasn’t somethat I am as big and expansive as the mystery above me, and I thing I wanted to hear at first and, over time, became one was created with purpose,” explains Doby. “And this purpose of the many lessons I was to receive from my experience: is connected to something much larger than myself alone.” There will not always be an answer,” says Doby. In this context, Doby’s position as a storyteller and advocate Letting go of control and absolving the need for an was seemingly written in the stars. Prior to her diagnosis, Doby answer or a reason allowed Doby to regain an active role garnered a steady following online for her vulnerable writing and in her own story again after feeling like an outside viewer poetry. Sharing the news of her breast cancer diagnosis with the watching a reel of her life. She realized she did have autoncommunity in her corner of the internet felt nearly natural for her. omy—she did indeed have a choice in all of this. “Everything I do and create is deeply rooted from this While Doby didn’t choose to have cancer, she could space,” she says. “Stories can help us widen our lens to an choose how she navigated this unknown realm. experience other than our own or pull us in closer to remind “I may not know how or why I got cancer, or what would us that we are not alone. Whether it be through awareness or a happen next. But I was free to choose what the word ‘healing’ gentle hand squeeze to someone else traveling their own cancer meant for me,” explains Doby. “Healing, in its essence, does journey, I only hope that by sharing my story it serves others.” not ask us to show up and be unshakeable and perfect—it The importance of togetherness for Doby was strengthonly asks us to be vulnerable and truthful. I know now that ened after going through treatment during the COVID-19 I can both grieve and rejoice. I can be brave and fearful. I pandemic. She cites it as what got her through some of the can hold gratitude and loss in the same hand. The same with darkest, heaviest moments in her cancer journey. rage and tenderness. I can be all of these things and still be When a full moon fell on the eve of her bilateral masin the work of my own healing, at the same time.” tectomy surgery, Doby’s friends coordinated a Zoom call featuring wigs, singing and tears to guide her through a “release ritual,” a celebration of Doby as she bid farewell to her breasts. She also credits her still being here to the Self-care has transformed into something extra doctors, nurses, medical staff and volunteers relentless in special for Doby since cancer. Throughout treatment, their quest of providing compassionate care. she’d practice yoga, collect eye-catching wigs or dance Cancer Wellness

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in her chemo chair—anything to encapsulate small joys within stretches of distressing days. It’s all a part of the bigger picture for her: being alive. “After having experienced cancer, the term self-care has taken on new meaning for me,” she says. “Now, I only ask myself the question: How can I become more free in my body? Whatever the answer is, I move towards creating that.” For Doby, creating art has always been a cathartic experience. Writing, she says, is a gift to herself that frees her from carrying heavy experiences all on her own. To put something out into the world is a vital act of liberation. Doby’s first book “I Am Her Tribe” is a poetry collection centered on the viral hashtag of the same name, exploring its potential as an empowering method of storytelling and connection. The collection was published prior to her cancer journey, and the creative process for Doby’s next two books—a poetry collection and a poetic memoir about the cancer journey—looks a bit different now due to the lasting effects of treatment. “When words come to me, I document them quickly with what my energy allows in the moment. Sometimes this is a voice memo, sometimes a pen and journal, and sometimes it is in my phone notes,” says Doby. “Needless to say, this makes organizing a book quite interesting. The stories I am writing now are the stories I have always wanted to write—and what a privilege it is to be alive to tell them.” Adjusting to survivorship has been a lesson to Doby in the timelessness of illness and grief, in the way that trials and tribulations can reshape us long after their presence is detected. And it doesn’t have to be a calamity forever. On the altar in Doby’s home sits a small silver bell, gifted to her by a friend after her last day of treatment. It is situated next to her framed surgical papers that detail her official day of remission. Beside those papers is an excerpt of lyrics from the Leonard Cohen song “Anthem:” Ring the bells that still can ring Forget your perfect offering There is a crack, a crack in everything That’s how the light gets in “Much like grief, I do not believe that cancer ever truly leaves us,” Doby says. “There are brief moments I forget it happened, and then there are moments where it is an all-consuming memory. All proof that change on a molecular level existed within me; I will never be the same. This, too, is a miracle. May everything have the privilege of being broken open at one time or another in their lifetime.”

Danielle Doby is a storyteller, artist and author based in Dallas, Texas. She is currently working on her next two books. Learn more about Doby at danielledoby.com and on her Instagram at @danielledoby. Cancer Wellness

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the thriver

JAMIE ZELLER BITTON AS TOLD TO BRITT JULIOUS

I l ived a very carefree, adventurous life.

I was living abroad. I traveled a lot. I enjoyed meeting new people from all around the world. I guess I always thought that I was invincible, you know? I moved back in 2009 and then it was October 2009 that I was diagnosed. In terms of timing, it was very lucky because they were able to catch it early at stage I. I was angry because I felt like this was interrupting my life. I felt in the back of my mind [that] it was inevitable since I carry the BRCA gene. My mom was diagnosed with breast cancer literally a year before. I did not need radiation or chemo. I felt a sense of relief because I thought, ‘This is going to be OK. This is something that I’m going to be able to get over and survive and manage.’ The biggest hurdle was the surgeries. I had a TRAM flap surgery where they removed my stomach tissue and reconstructed my breasts because I had a bilateral mastectomy. Unfortunately, a week after that, the right side of my breast [had] a blood clot, so they had to remove that side and replace it with back tissue. For me, a lot of [my] trauma was the surgeries. I was single. I was just thinking, ‘Who was going to accept me in this new body?’ I had all of these goals and aspirations. I didn’t want anything to get in my way. I told myself that once I got through those challenging times, I would set out to travel. [I’d] always wanted to go to India and go to the Taj Mahal. And then after that, I’m going to live out my dream and move to Israel, teach English, improve my understanding of the culture and the language and become more fluent, meet new people. And I actually did those things. And on top of that, I got more into exercising. Eventually, I joined a hiking group where we hiked and traveled all around Israel. That’s how I met my husband.

Photo by John Khuu

This is going to be OK. This is something that I’m going to be able to get over and survive and manage. It was then that I finally got comfortable in my own skin and really truly accepted myself, scars and all. He was the first person that I started dating that really wasn’t scared of my story. Some guys would just be like, ‘Oh, this is not for me.’ But with my husband, it didn’t faze him. He was so open and accepting and made me realize that we all have a past. I think [cancer] makes you realize that you’re not invincible and that life is short. You just never know what is going to happen. And so you have to follow your heart and follow your intuition and instincts and go with that. I’m glad that I did that.

To hear more from Jamie, visit cancerwellness.com

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VISIT OUR WEBSITE OR GIVE US A CALL Mesothelioma is a rare cancer caused by asbestos exposure. Approximately 3,000 people are diagnosed annually. Although occupational exposure is the most common way people are exposed, secondhand exposure also poses a significant risk of diagnosis. Family members who handle clothing contaminated by toxic asbestos fibers may be diagnosed with asbestos-related diseases like mesothelioma or asbestosis. With a latency period of 30 to 40 years, symptoms of these diseases are often difficult to spot. If you or a loved one has been diagnosed with lung cancer due to asbestos exposure, we encourage you to give us a call or visit our website today. Let our team of experienced and dedicated attorneys fight for you.

www.vogelzanglaw.com 872-210-5761

V O G E L Z A N G L AW V O G E L Z A N G L AW

Braving the Battle Former NFL player Devon Still and United Therapeutics Oncology are teaming up through Braving NeuroBLASToma to provide a playbook for the rare childhood cancer—and for Still, it’s personal.

Photo provided by Devon Still

BY BRITT JULIOUS

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hildhood cancer diagnosis is the furthest thing “What Zara does is it tries to encourage and inform most parents think about concerning their chilkids what they will be [facing] throughout their journey dren’s health and safety. But each year, thousands and tell them the steps that they can take to really overof children are diagnosed with the debilitating come it,” Still says about the book. disease, leaving many parents confused and scrambling. Leah Still wrote the foreword to the book and shared Former NFL defensive end Devon Still was one of details of her own cancer journey. those parents. In 2014, Still’s daughter Leah was diag “When Leah read the book, it really resonated with nosed with stage IV neuroblastoma, a solid-tumor cancer us because we saw our story and that’s how I knew how that can form in the abdomen, spine, chest or adrenal powerful this book series was,” Still says. “When you go glands. The rare cancer most commonly develops in through that battle and when you read a book [that is] not children under the age of five. Around 800 children are about you but you can still see yourself in that book, that’s diagnosed with neuroblastoma each year, accounting for how we knew it [would] have a great impact for families around 7 to 10 percent of all childhood cancer cases in the that are battling cancer.” U.S. Nearly 70 percent of children diagnosed with neuro Leah agreed, adding that reading the book was enjoyblastoma are diagnosed at an advanced or metastatic stage able. “I felt really good about it because I can just kind of and only 50 percent achieve remission. relate [to] it,” she says. “And then I just saw myself and my Devon took a career hiatus to focus on Leah. After situation and I just felt better.” surgery and treatment, Leah was declared in remission in Still says his family found many similarities to Zara’s 2015 and has been cancer-free since then. Yet, despite that experience in the book. “You can’t really control much good news, Still was determined to continue his advocacy of what’s going on with your battle with cancer, but you for childhood cancer awareness. can control how you attack today,” Still says. “We did just “I wanted to use my platform like Zara did in the book, where to inform other families out there we didn’t allow being in the hosthat are battling cancer that there pital to steal our joy. We danced are resources to help you do this in the hospital like Zara dances in “There wasn’t a book battle,” Still says. the book. We just had a ball. We where it let me know, ‘OK, Enter Braving NeuroBLASToma. watched movies all the time.” this is what you should The new campaign, developed by Reflecting back on their United Therapeutics Oncology, aims cancer experience, both Leah and expect when you get diagto provide warriors and their families Devon reiterate the importance of nosed. This is what you with the tools to navigate a neuroblasfinding joy in the face of extreme toma diagnosis. United Therapeutics pain. “I learned that you should should expect during treatOncology is an organization focused just live life every day,” Leah begins. ment. And this is what on “addressing unmet needs in the “Even when you’re going through pediatric neuroblastoma population.” something like that.” Still echoes this happens after treatment.’” “I used to say in my interviews sentiment, saying the most important when Leah first got diagnosed that thing the family learned was to not I wish there was a playbook for this allow cancer to steal your joy. because I didn’t feel like there was a playbook on how to As a whole, Braving NeuroBLASToma helps families overcome neuroblastoma,” Still recalls. “There wasn’t a book know they are not alone. A diagnosis may make a family where it let me know, ‘OK, this is what you should expect feel like they’re the only ones undergoing the cancer treatwhen you get diagnosed. This is what you should expect ment experience. “You just feel lost. You feel alone. You during treatment. And this is what happens after treatment.’” feel like nobody understands,” Still recalls of his family’s Braving NeuroBLASToma launched in September as journey. Family and friends may not understand what part of Childhood Cancer Awareness Month. they are going through, or a family may assume as much, Among its many materials, Braving NeuroBLASToma choosing to handle things alone. includes a website with a library of resources including “We allow pride to get in a way where people extend help questions to ask one’s doctor, information on navigating and we don’t take it because we feel like we’re going to be a clinical trials, a breakdown on understanding treatment burden in people’s lives,” says Still. Braving NeuroBLASToma and advice for caregivers. aims to remove those feelings of doubt and burden, giving Braving NeuroBLASToma also includes four illusfamilies the best overall chance of healing and recovery. trated books highlighting different stages in the high “When you take advantage of these resources, you risk neuroblastoma journey. The first book, “The Big understand that this cancer community—although it’s Adventures of Little Skivolo,” focuses on initial diagnosis not something you want to be a part of—is really a family,” and treatment. “The Next Big Adventure of Little Skivolo,” says Still. “We do what we have to do in order to help the second book in the series, focuses on antibody therapy other families who are going through the same battle.” during treatment. The third book, “Little Skivolo’s Book of Fun,” is an activity book crafted to entertain families during long hospital stays. The latest book, “Zara Takes Off,” focuses on a famiTo learn more about Braving NeuroBLASToma and to ly’s life navigating the complicated waters of post-cancer download their free e-books, visit neuroblastoma-info.com/ treatment. resources-support/braving-neuroblastoma. 70

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Talk Off

Catharsis and community abound in “Talk About Cancer,” a weekly podcast featuring warriors, caregivers and more speaking candidly about their cancer experience. BY TAYLOR NOVAK

erena Hu believes that everybody has a story to whole picture of when cancer happens to someone’s life.” tell. In the throes of the COVID-19 pandemic, it’s Another important aspect of Hu’s work in humanizing the why she started a podcast. cancer experience is passing the mic—literally—to underrepre The “Talk About Cancer” podcast is a weekly sented groups in the cancer community. She makes it a goal to audio program featuring cancer supporters, warriors and provide a platform to those whose voices may be lost otherwise. thrivers from all walks of life. The show provides a sto Episodes of “Talk About Cancer” have explored a vast rytelling platform for the guest to talk freely about their array of stories, such as a man’s experience with his own experience with cancer in whatever way they choose. breast cancer diagnosis; a Vietnamese man’s approach to Hu, who had never worked on a podcast prior to “Talk grief influenced by his culture; and a Black woman and About Cancer,” knows there are many different experiher mother’s dual encounter with cancer. ences to be had under the cancer umbrella, but also many “I’m trying to say, ‘OK, who are we not hearing from as common themes—like loneliness. much?’” says Hu. “Not just because of numbers and avail “The cancer experience is one of the toughest things ability but also different communities, different communithat you’re going to go through in life, and when I was ties of color—especially minority groups—that may not have going through that experience, I was desperately looking access to health advocacy. A big part of the mission is to try for other people’s experiences,” explains Hu, who acted and elevate those voices, so they become more normalized, as a caregiver to her father as he battled late-stage kidney and in the process empowering them. They’re the ones who cancer. “It’s one of those ironic things. are bringing the perspectives of their You have people around you who are communities to a wider audience.” very supportive, but I needed others While the initial goal of “Talk About who were going through what I was. Cancer” was to offer solace to lonely lis“This show continues There was just something very differteners, Hu has found that the podcast ent about that kind of connection.” is cathartic for the guests as well who to open my mind to not After her period of caregiving came don’t feel comfortable talking about just people’s experito an end, Hu used the time to reflect cancer in their day-to-day life. ences with cancer, but on finding an “antidote” to loneliness. “For a lot of [the guests], cancer She realized that capturing people’s happens, you lose people. And then their philosophies about stories in a podcast format could combat everybody else just expects you to move life and how you should feelings of isolation that other people on. Or in the other case where people are touched by cancer may be experiencing. longtime survivors, people stop asking live it to the fullest.” “For people who are going about it because they don’t know what through the cancer journey, either for else to say,” says Hu. “I wasn’t expecting themselves or with a loved one, they it, but my guests thank me for the expecould sort of passively listen to somebody else’s story and rience because it gives them the chance to talk to someone find comfort knowing they’re not alone, there are others who is really listening and curious about their experience.” out there struggling with similar situations,” says Hu. Producing the podcast has also helped Hu come to terms Fueled by the fire of a passion project during the pandemic, with the loss of her father. She recognizes that, as a caregiver, she Hu taught herself the ins and outs of podcast technology in her approaches cancer from a different place than a warrior might. free time outside of work. A former social worker, her profesShe knows the mental burden is not the same, but as someone sional experience came in handy when she began to reach out to who is still going through her grief journey, Hu has found the members of the community to source people for the show. Her show to be a healing experience—and a humbling one, too. social work background also gave her valuable insight on the topics “This show continues to open my mind to not just peoshe wanted her “non-professional,” everyday guests to explore. ple’s experiences with cancer, but their philosophies about life When it comes to the content of “Talk About Cancer,” and how you should live it to the fullest. I love that there’s no Hu is especially interested in how cancer affects interperone right answer, and I continue to learn all the different ways sonal and intrapersonal relationships. She encourages that people are getting through hardships,” Hu says. “I think guests to talk not just about the medical ordeals they faced, about this as not just my project. I am the facilitator. My guests’ but their stories of mental health, self-care rituals, commustories are really what’s helping listeners out there.” nication tools, trauma responses, cultural norms and more. “I really try to do this from a 360-degree perspective. Listen to the diverse stories of the “Talk About Cancer” podcast And I really like to explore how cancer impacts people’s at talkaboutcancerpodcast.com and on most podcast players. emotional experience, how that impacts their relationships Get weekly snippets of the latest episode on Instagram by followwith others around them,” says Hu. “I’m trying to paint the ing @talkaboutcancerpodcast. Cancer Wellness

Stories of Hope with Whitney Reynolds

This is your spot for hope that comes directly from the cancer community. We’ve identified inspirational stories that have been formed in the midst of the struggle and we are honored to share them with you.

WHAT’S YOUR PASSION BEHIND YOUR JOB?

I get to meet so many different people from all sorts of backgrounds. Working with volunteers in a nonprofit is different from corporate relationships. You get to connect with people on a personal level and really get to see their soft spot. I have had large, tough, grown men break down in tears telling me personal stories, and though they are sad moments, it’s such a special honor to me when someone opens up like that. On another level, I have worked in nonprofit fundraising for over 10 years and never have I worked for an organization that actually makes a real impact. The research that OCI raises funds for has better accuracy than any other laboratory in the world trying to make the same discoveries. I believe in the research and I look forward to not only being able to benefit from the research myself someday, but I look forward to my children benefiting from the research someday. 72

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1. A stage I diagnostic test for ovarian cancer. 2. A nanoparticle delivery system that can eliminate tumors without harming the rest of the body. (This applies to all cancers.) 3. An algorithm that can predict what chemotherapy treatment a patient should be on, instead of the current “trial and error” method. (This applies to all cancers.) 4. Detecting metastatic and recurrent cancer through circulating cancer cells. (This applies to all cancers.)

HOW WOULD THIS BE A GAME CHANGER?

BY WHITNEY REYNOLDS

ello again! I’m Whitney Reynolds, host of the nationally syndicated talk show, “The Whitney Reynolds Show.” Earlier this year, I met Kathryn Harper, director of the Ovarian Cancer Institute (OCI). Having lost both her grandmother and mother-in-law to ovarian cancer, Harper explained why this type of cancer is personal for her and how new research could be a game changer for the disease.

WHAT MEDICAL BREAKTHROUGHS WITH OVARIAN CANCER ARE YOU ALL WORKING ON?

CAN YOU GIVE US SOME OVARIAN CANCER STATS?

One in 78 women will develop ovarian cancer in her lifetime. About half of the women diagnosed every year are over the age of 63. Every year, 22,000 women are diagnosed with ovarian cancer. Every year, 14,000 women die of ovarian cancer. A stage I diagnosis results in a 93 percent 5-year survival rate. Only 15 percent of ovarian cancer cases are diagnosed in stage I. The average 5-year survival rate is 48 percent.

WHAT’S YOUR PERSONAL CONNECTION TO OVARIAN CANCER?

I never had the chance to meet my grandmother, Edith Harper. She was my father’s mother and my dad and uncle speak of her like she was an angel. I really missed out on knowing someone truly amazing because ovarian cancer took her before I was born. As a result, my father and I [were tested for the] BRCA [gene mutation]. BRCA1 or 2 is a gene mutation that can increase your risk of developing ovarian cancer and men can be carriers of this gene. Thankfully, neither of us have the mutation. I’ve also missed out on the chance to meet my mother-in-law who also passed away from ovarian cancer. Ovarian cancer stole my opportunity to know these important women in my life. I fight for the research laboratory so that someday my children will not have to suffer like my family members.

The first project, an early diagnostic test, would increase the 5-year survival rate dramatically and save countless lives. The other three projects could change the face of cancer, in general, because those technologies do not care where the cancer originated. These technologies could improve ovarian cancer diagnosis and cancer therapy forever, saving lives all over the world.

HOW CAN PEOPLE GET INVOLVED?

Join a fundraising committee, host your own fundraiser, host a Facebook fundraiser (there are no processing fees and 100 percent of funds go to OCI), fund a fellowship, participate in an OCI event, ask your company to sponsor OCI events or offer in-kind services and/or products.

WE’RE IN THE NEW CANCER COMMUNITY. WE THRIVE.

CHERYLE JACKSON CLAUDIA “SUNNY” HAYES MARIA LUISA GONZALEZ DAMIAN BUCHMAN

Innovations and Research

76 PUT TO THE TEST 78 THE FIGHT FOR BREATHING RIGHTS

Put to the Test The COVID-19 pandemic is shaping the way we approach cancer screenings. Low-cost, less invasive and more convenient testing options for cancer diagnoses are on the horizon. BY TAYLOR NOVAK

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he COVID-19 pandemic interrupted an array of plans and appointments—including cancer screenings and tests. The National Cancer Institute reported that in March 2020 alone, more than 800 appointments for lung cancer screening were postponed. With the delays in IRL cancer testing, some may be wondering if there are better ways to approach screening—for example, can screenings at a doctor’s office be developed for within the comfort of your own home instead? Is there a way to evaluate the best amount of yearly testing for each person based on their individualized health and risk factors? Could doing so also lead to better treatment? Luckily, if you have a rhetorical health question, there’s likely a research team already working on answering it! When it comes to more convenient and efficient cancer screening, these studies and projects aim to improve patient outcomes while decreasing time spent in the doctor’s office. WISDOM STUDY One of the current research trials that is ongoing is the WISDOM Study, headed by renowned breast cancer surgeon-scientist Dr. Laura Esserman. WISDOM, or “Women Informed to Screen Depending On Measures of risk,” compares two breast cancer screening options: annual mammograms starting at age 40 or customized breast cancer screening recommendations dependent on an individual’s risk factors such as breast density, family history or genes. These personalized recommendations include what age to begin screening, how often to screen and what type of screening modality is best (mammogram, MRI or both). “This is a landmark research trial that is working to find the optimal way to screen for breast cancer so that all women can live healthier, longer lives,” says Esserman. The WISDOM Study’s facilitators understand that cancer isn’t the same for everyone, especially when it comes to breast cancer. They want that perspective now reflected in the way that breast cancer screening is approached. “Despite outstanding medical advances and increased survivor rates, breast cancer continues to take 40,000 lives per year in the United States. Women of color have higher fatality rates and are afflicted by more aggressive cancers than others. The WISDOM Study has from the start made it a priority to represent a diverse population of women,” Esserman explains. “The WISDOM Study is using the optimal tools available in medicine today and gathering substantive evidence to determine the best, safest way to screen all women for breast cancer while also reducing false alarms, unnecessary procedures and the stresses that invariably accompany them.” Registration is still open on the WISDOM Study’s website, and over 100,000 women have already joined the five-year trial. Participants complete online questionnaires about their lifestyle, health and family history of cancer, then placed in one of two groups. The “Annual Group” receives mammograms once per year, while the “Personalized Group” receives screenings based on sophisticated risk assessment relating to the completed questionnaires and the results of an at-home saliva genetic test. For someone who is especially high risk, the option to consult with one of the WISDOM Study’s breast health specialists is also available. In addition, the clinical team will conduct an ongoing review of a participant’s breast

health history and current exams. “The study is working to better identify predictors of more aggressive tumors and modernize breast screening and cancer prevention practices to save women’s lives,” says Esserman. “The WISDOM Study is a vitally important movement towards making screening safer, more precise and less fear-inducing.” Learn more at thewisdomstudy.org. THE BLUE BOX For at-home breast cancer screening, look no further than the promising future of Judit Giró Benet’s The Blue Box. The 24-year-old Spanish engineer received the 2020 James Dyson Award for her design utilizing urine samples for low-cost, convenient breast cancer testing. The biomedical testing device employs artificial intelligence to detect early signs of the disease, using chemical sensors as reactionaries to any targeted breast cancer biomarkers present. Results are provided via The Blue App on your smartphone in less than one minute. The Blue Box is currently under development, being trained and tested at two hospitals. Keep up with The Blue Box developments on Instagram at @thebluebox.ai. GALLERI BLOOD TEST Last year, cW covered the results of an accuracy study for an innovative multi-cancer early detection blood test conducted by researchers at the Dana-Farber Cancer Institute. The blood test, developed by biotech healthcare company GRAIL, Inc., has the ability to analyze a single blood draw for multiple cancer types—as many as 50. Research boded well for the Galleri test as complementary testing to single cancer screenings, and in June 2021 it was able to launch for use by eligible individuals in the U.S. Those who may be at an elevated risk for cancer, such as those over age 50, can obtain the blood test with a prescription and undergo the blood draw at qualified locations or through at-home visits. Results are provided in two weeks. GRAIL plans to pursue full FDA approval in 2023. Learn more about the Galleri test at galleri.com/the-galleri-test.

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The Fight for Breathing Rights The landscape of lung cancer is changing, but there’s still work to be done. Dr. Michael Liptay is one health care professional spearheading the push for preventive action. BY: ERIKA R. WHITEHEAD

Cancer Wellness

lthough smoking is still the leading cause of lung already predicting that we might be finding some people cancer in the United States, spreading awareness with later-stage diseases as a whole because of the missed about preventative care is one of the most effective opportunities over the past year or so with COVID.” ways to combat it. Dr. Michael Liptay, professor of With 90 percent of eligible lung cancer screening surgery and chairman of the Department of Cardiovascular patients still not undergoing their preventive screenings, and Thoracic Surgery at Rush University Medical College, finding a way to reduce this number is vital. Liptay and his has devoted his career to providing top-notch care to lung team have adopted a two-step approach to finding a solution. cancer patients and encouraging them to advocate for “The first is to help our primary care physicians and themselves. To Liptay, taking good care of yourself ahead any other primary, any other health care professional that of time can prevent health complications down the line. has patients at risk in their practice, to educate them on the “The principles of people that get sick and how we criteria,” he says. Liptay hopes to ensure open lines of comtend to them are pretty much universal, but the tools and munication and increased access to education by building the diagnostic techniques and therapeutic things we have and maintaining great relationships with primary care phyat our disposal now are better and different than when I sicians and patients and their families. The goal is to make started, and they’re going to be better and different five to it easier for physicians to have more conversations about 10 years from now,” Liptay says. smoking cessation and formal lung cancer screenings. The According to the American Lung Association (ALA), second step for Liptay and his team is continuing to reach more than 541,000 Americans have been diagnosed with out to patients with a family history of lung cancer or those lung cancer. The disease is the most common cancer who have smoked for at least 15 years. worldwide, accounting for approximately 2.1 million new “There are patients that could be at a reasonable cases annually. Early detection is a critical component of risk still that are outside of that criteria,” Liptay admits. a lung cancer diagnosis and treatment process, and it can “Say they had a family history of lung cancer or they significantly impact patient prognosis. only smoked for 15 years and quit. That’s still a signifi “Don’t hesitate to push with your primary care doctor cant exposure, and we feel that those people should have or even call up centers like ours and see, if you’re eligible, access to, you know, potentially life-saving screening if you can obtain a lung cancer screenstudies themselves. So, Rush is in the ing CT scan,” he advises. “That’s really process of coordinating things with going to be your best chance at, if you’re our system to provide affordable lung A lack of communication, going to have a lung tumor, being able cancer screenings and follow-ups for education and access to to have it detected early and cured.” those patients.” To further combat the prevalence of Liptay leads a team of world-class screenings contributes to lung cancer cases, the U.S. Preventive physicians devoted to offering the the struggle some indiServices Task Force (USPSTF) now best in patient care. From conductviduals and health care recommends a yearly low-dose CT scan ing cutting-edge research to employfor people aged 50 to 80. The task force ing a multimodal treatment approach, professionals face. also recommends reducing the number Liptay encourages everyone to know of pack-years from 30 to 20. The change that a lung cancer diagnosis today, reflects a new attempt by medical proespecially when detected early, doesn’t fessionals to increase the number of eligible people for always mean what it did 30 years ago. screening. By following these recommendations, health care Liptay also wants patients to know that there’s always professionals believe that we can reduce the risk of death an opportunity to make healthy lifestyle changes despite from the disease by 20 to 25 percent. Under these guidelines, having a smoking history. “There’s often a nihilistic or 14.5 million Americans will now become eligible for annual fatalistic attitude that patients can have.Well, you know screenings, an increase of 6.4 million. what, if I get it, I get it. They can’t do anything about it Although members of the medical community have anyway,’” he shares. “I would advocate that if patients are pushed for early detection as a well-known and highly still smoking, it’s never too late to get your health back. effective way to diagnose lung cancer cases much sooner, Your lungs will thank you.” the process has its flaws. Liptay notes that it can still be Liptay remains dedicated to reducing the number of challenging to get patients to follow through with prevenlung cancer cases annually by spreading awareness and tative measures. A lack of communication, education and continuing to offer his patients invaluable care. The same access to screenings contributes to the struggle some indipassion for innovation and patient care that drove him to viduals and healthcare professionals face. pursue a career in medicine fuels him even more today. COVID-19 has also complicated matters over the last “Fast forward to today, we’re lung cancer screening, year. Many Americans remained at home, particularly there’s a lot of enthusiasm of early detection and the nihilearly on during the pandemic. The result was a series of ism of patients with lung cancer all dying, in short order, rescheduled and, sometimes, forgotten doctor’s appointhas been replaced with a new optimism of early detecments. These delayed preventive visits, Liptay argues, may tion and other options even for patients that present later, be cause for concern. such as immunotherapy and specific targeted therapy to “The challenge we still have is getting that word out to one patient’s specific tumor gene expression,” Liptay says. primary care doctors and patients directly because I hate “All of those things are things that, today, make my field to admit this but still, nationwide, only less than 10 percent so exciting and also make my choice to go into thoracic of eligible patients are screened annually,” he says. “We’re surgery, I feel like, such a rewarding one.” Cancer Wellness

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THE BEAUTY OF BIBLIOTHERAPY PULLING THE C CARD

The Beauty of Bibliotherapy When you’re a parent diagnosed with cancer, it can be hard to find the words when discussing it with your children. Luckily, there’s age-appropriate books that know all the right things to say. BY BETHANY KANDEL

acing cancer of any kind is hard enough. Telling your children about it makes it even tougher. But it’s something parents need to talk about, experts say, because kids know when something is up. “Silence is lonely and scary,” explains Sarah Porter, a social worker who helps families facing cancer. “Since children can sense and feel emotional shifts in the family, not telling them what is happening leaves them guessing. Then they worry, and have no one to talk to about it.” That’s where bibliotherapy comes in. “Not knowing where to start or how to present something in an age-appropriate way can feel overwhelming and paralyzing and can contribute to silence,” says Porter, author of “A Kids Book About Cancer.” “Having a book you trust to read with a child can be the conversation starter.” The bottom-line message when discussing a parent’s cancer is that “they didn’t do anything wrong, that they didn’t cause the cancer, they won’t be alone and you will face it together.” Thankfully, there are many books for children of all ages to open lines of communication. Here are a few to get you started:

Cancer Wellness

Topic: The Genetic Factor

“Mom’s Genes: Empowering children to learn about their family’s health history” by Shannon Pulaski (ages 4–8) Genetics is a heavy topic to discuss with kids and something many adults don’t even understand. But Shannon Pulaski decided it was never too early to start talking to her three young children about their family health history after she tested positive for the BRCA1 mutation and had a prophylactic mastectomy. “We started to talk about genetics in a simple way — you get your freckles from your mom and your height from your dad,” she says. “We drew pictures and once we had a collection, I started thinking, ‘This could be a book.’” “Mom’s Genes” was soon born. “They already knew that there’s cancer in the family because grandma was sick,” she says. “We started to talk about how these things can run in your family so it’s important to have a healthy lifestyle.” Pulaski wanted such discussions to be ongoing and comfortable. “The idea is to slowly incorporate this information into their lives so they can process it, cope with it, and develop positive proactive behaviors as they grow,” she adds. As the book says: “Your family tree can be a guide to the body’s maze that is deep inside. Ask your mom, ask your dad, ask your grandpa, too, to discover what genes are inside of you!” After all, says Pulaski, “Knowledge is power.”

Topic: Chemotherapy “Nowhere Hair” by Sue Glader (ages 2–6)

Imagine a little child who sees his or her mom bald for the first time. They may wonder, “Where did it go?” Sue Glader took a serious topic and had a little fun with it in “Nowhere Hair.” The character wants to know where her mommy’s hair has gone after chemotherapy (though the word is not mentioned). “I’ve looked, you know. And it’s not anywhere,” she writes in the book. Not in her mom’s purse, the cookie jar or beneath her bed. Then the little girl fantasizes about what the hair could be doing: lining a bird’s nest or cloaking a cold cat. Instead of being scary, Glader wanted a book that is “upbeat and informative” and would “buoy spirits.” “I turn to books for comfort and to understand things that are confusing,” she says. It’s particularly important at a time of pandemic, she believes, to explain that cancer is not a germ or virus. “When she kisses me, I can’t catch what she’s got,” the girl says of her mom. It’s also not because of anything the child “did or said or even thought.” In the end, the little girl realizes her mom’s hats “for every mood” are fun and fancy. Yet “when mommy’s feeling confident, she wears nothing at all,” and goes bald. She comes to the conclusion that although her mom’s hair will grow back, “it’s what’s inside that counts.”

Topic: Metastatic Cancer

Topic: Lymphoma

“The Cancer That Wouldn’t Go Away: A story for kids about metastatic cancer” by Hadassa Field (ages 4–8)

When Phyllis Ershowsky was diagnosed with lymphoma, her adult daughter Emily put her life on hold to be by her side through treatment. She brought along Lucy, a rescue dog. They both inspired “Emily and Lucy to the Rescue.” “I thought about how a young child faced with cancer or another serious illness in the family would feel frightened, anxious and helpless,” says Ershowsky. “And I dreamed of a book that would help children know that through love, kindness and compassion, they could regain control, make a difference in their family’s [lives] and be a hero in his or her own story.” “I hope that if a family facing cancer is finding it difficult to find the words to express to a child that it’s OK to feel scared, and that there are things they can do to help, that ‘Emily and Lucy’ enables them to articulate those thoughts,” she adds. “Books can bring families together during difficult times and explain complicated issues.” As she writes in the book: “Emily and Lucy did not slay dragons. They did not climb tall ladders to put out fires. Nor did they go on a high-speed chase to catch the bad guys. But to Emily’s mom, they are the heroes of her story.” “I want kids to know that they are not alone. There are other children going through similar circumstances. I also want them to see that even during cancer, you can enjoy family time together. You can laugh at your favorite TV shows, do puzzles, play games and have outings,” she says. It’s also OK for kids to know that their parent may be too tired after treatment and have to rest. Communicating and taking the mystery out of these challenges provides reassurance.”

Unlike stories about early-stage cancer—which talk about life going back to normal—life has irrevocably changed forever with metastatic cancer. The future is uncertain. You may need different books to read to your children since there likely won’t be a happy ending and your cancer will never be “cured.” “The Cancer That Wouldn’t Go Away” is written for the child whose parent is living with incurable cancer that has spread, but the prognosis is open-ended. Hadassa Field wrote the book for her young niece and nephew when their mother, Ahuva, was diagnosed with breast cancer at age 25. Two years later it became metastatic. “Ahuva was searching for a way to explain the new reality to them,” explains Field. “She quickly discovered that there was no such book.” She was wary of using one that might “present a future that couldn’t exist.” So, Field wrote the book herself and the family used it “as a springboard for healthy discussion, as well as tears.” It explains that the original cancer has returned “in too many places.” It talks about the uncertainties of life and the future. But love and laughter remain constant as they “take life one day at a time.” The book also has a comprehensive guide for parents and professionals, written by child trauma psychologist Rinat R. Green. She reminds parents that a discussion about cancer with your child is “not a one-time, get-it-all-in event,” but rather a process that “will evolve over time.” Such books can be read over and over as the child comes to grips with the changes in his or her life and new questions and issues arise.

“Emily and Lucy to the Rescue” by Phyllis Ershowsky (ages 3–10)

Cancer Wellness

Pulling the C Card Much of the innovative care and clinical trials for cancer are located in expensive cities, where lifesaving treatment might mean high-cost hotel stays, too. In New York City, The C Card aims to offset this financial burden for warriors and caregivers. BY ALYSSE DALESSANDRO

Cancer Wellness

There’s no time limit on The C Card membership t’s no secret that cancer treatment in America can be because, as Walder notes, cancer is a lifelong disease that costly. Even with insurance, one’s bill doesn’t include requires ongoing testing and maintenance, even after a travel to receive quality and often lifesaving treatment. patient completes treatment. Walder also wanted there When Michelle Walder was going through cancer to be a way for cancer patients and survivors to access a treatment at New York University and Memorial Sloan place where they could rest and restore. “Another Kettering in 2017, she found herself meeting fellow patients thing I learned during my own cancer journey is how from across the country—and sometimes, across the globe. therapeutic a short getaway can be,” says Walder. “Hotels “I had met patients who would drive from North provide a safe escape from reality even if it is just for an Carolina every two weeks for treatment and then stay in overnight trip, and that alone can help the healing process a New Jersey parking lot in their car overnight because tremendously.” they could not afford to stay in a hotel,” Walder shares. “I For now, The C Card is available only in partnership also met patients from as far away as India and the United with New York City hotels. New York City is a hub for Arab Emirates who were all staying in hotels or with cancer treatment and medical innovation. Walder notes friends and family.” that New York City also provides access to clinical trials Although she lived in New York City at the time, and treatments that may not be available in other cities or Walder herself had to stay in a hotel for a month after comcountries. However, The C Card is still looking to spread pleting a stem cell transplant. Her building was undergoits reach outside The Big Apple. ing construction that could have been damaging to her “We would love to expand to other cities in the next vulnerable immune system. A friend helped Welder get few years,” says Walder. “With the a discounted hotel rate that allowed success of The C Card in New York, her to stay safe during her building’s we have realized that we would be able construction. “Hotels provide a safe to easily expand the service to other This experience made Walder found cities such as Boston, Houston, Los The C Card in 2020. The C Card is a escape from reality Angeles, Cleveland, London.” free membership website that serves as even if it is just for an No matter how independent a the connection point between cancer person may be, cancer is tough to get patients and caregivers to New York overnight trip, and through alone. Having gone through City hotels offering reduced room rates. that alone can help cancer treatment herself, Walder had Currently, there are 12 hotels signed on the healing process to learn that it is OK to sometimes pull as partners with more on the way. Hotels “the C Card.” discount their daily rates anywhere from tremendously.” “Having been a patient myself, I had 10 to 40 percent in addition to providing a very hard time letting other people complimentary amenities to The C Card help me,” says Walder. “In my line of members. work, I am constantly taking care of guests and co-work Walder has a long history working in hospitality, an indusers. Therefore, it was a struggle to let my guard down and try she fell into by default when she started working at her give up some of my independence. Once I realized that parents’ small hotel and restaurant at 13 years old. She went I couldn’t get through cancer alone and that allowing on to study hospitality management full time in Lausanne, others to help me actually helped them in return, getting Switzerland. Walder’s work has taken her from New York through treatment became easier. The partners that work to Miami, Shelter Island to Los Angeles and Las Vegas to with The C Card want to help and are happy to do so.” Washington D.C. Currently, Walder works as the director of operations for the NoMad London. While there are other organizations such as Hope Lodge and Joe’s House that provide or help connect cancer patients with places to stay while traveling, Walder notes the process can be lengthy. Time is not always a luxury that cancer patients have. “These programs do require some paperwork from a patient’s medical team, making it take some time to finally be able to actually book a stay,” says Walder. “Being in hospitality, my mind naturally would wonder whether there was any way we could help provide safe and clean rooms to more patients that need housing in a quick and uncomplicated way.” Using The C Card is designed to be easy for those who need it. Hospital social work teams and nonprofit organizations privately promote The C Card to those who would benefit from its perks. From there, patients and caregivers are able to sign up for free and immediately start using the service. Users are able to view links to each hotel and The To learn more about The C Card and to sign up as a user, visit C Card discounted rates directly within the portal. theccard.org. Cancer Wellness

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