Lessons from cancer patients in the time of coronavirus
For the immunocompromised and those with disease, social distancing and uncertainty are a way of life. Daily walks, gratitude and dancing help.
March 20, 2020 • By Diane Mapes / Fred Hutch News Service
Ghecemy Lopez of Los Angeles, a two-time cancer survivor who now has immune issues, donned protective goggles, a mask and gloves to see her doctor last week. Photo courtesy of Ghecemy Lopez
You’re washing your hands like crazy. Staying 6 feet away from people with the sniffles. You don’t know if it’s safe to hug your friends or family, or go to work or what. You don’t even know if you’ll be alive in a year.
It’s scary. It’s surreal. And for a lot of cancer patients, it’s … a Tuesday.
“Facing cancer twice has taught me to embrace my ever-changing life status,” wrote thyroid and breast cancer survivor Ghecemy Lopez during a recent breast cancer “Twitter chat” on coping strategies for the COVID-19 pandemic. “Survivors have so many lessons to share. We’re experts in adapting to ‘new normalcy’ — even before it became popular.”
For those who’ve been diagnosed with cancer, the onset of the coronavirus pandemic has felt a little, well, familiar. The frantic Googling and data-gathering. The denial and disbelief. The uncertainty and panicky behavior. Cancer patients have been there. Same goes for all the handwashing and hypervigilance. People who’ve been through surgery or radiation or chemotherapy or bone marrow transplants or other immunocompromising treatments are routinely forced to hunker down at home, avoiding crowds and friends with colds, skipping weddings and air travel and ordering their groceries online.
As one Seattle survivor put it, “I’ve sheltered in place lots of times.”
Now the whole country — the whole world — is experiencing the initial shock of a new “diagnosis.” Not cancer, but a brand-new coronavirus to which we have no immunity and no treatment. At least not yet.
But we do have pros we can tap for advice on how to get through these strange days of social distancing and relentless anxiety. We turned to cancer patients, caregivers and experts from Fred Hutchinson Cancer Research Center and its clinical-care partner, Seattle Cancer Care Alliance, for their hard-fought insights on living with uncertainty, dealing with self-isolation, soothing fear, staying connected and, as much as possible, remaining resilient.
Denial is not a strategy
“Cancer absolutely preps you for something like this,” said Cari Roy, a 59-year-old New Orleans psychic and cancer survivor who’s also endured 9/11, multiple hurricanes and an oil spill. A year out from treatment, Roy said she’s increasingly concerned about the number of people who refuse to take the coronavirus seriously.
“I’m seeing a lot of people in denial,” she said. “But people need to be aware of what’s going on and get real. We’ve all just received a diagnosis. And the treatment plan for all of us right now is to just sit down and pay attention to self-care. The universe is telling us to slow the ‘F’ down.”
“I listen to a lot of rock and roll. And disco. I love music, period, but mostly happy, upbeat music that makes me dance and feel like a teenager again.”
— Breast cancer patient Cari Roy
Don’t like what’s happening? Few patients do. But just as with cancer or other life-threatening diseases, pretending it’s not happening only makes it worse.
“Everybody’s going to be inconvenienced by this,” Roy said. “With cancer, we understand what that’s like. I lost six months, a year to it. So far, anyway. It’s OK to miss out on stuff right now and go inward. That’s what you do with a disaster and with cancer.”
Be prepared, not panicky — and pace yourself
Kristin Kleinhofer, a 45-year-old patient advocate from Oakland, California, went through numerous treatments for her leukemia, including chemotherapy, a Fred Hutch immunotherapy trial and a stem cell transplant. Avoiding infection is standard operating procedure.
“It’s extreme, particularly with a transplant,” she said. “You’re living in a bubble — staying away from people, only going out if necessary, wearing a mask, sanitizing everything constantly. All the things they’re recommending now. People are freaking out because they have to be inside for three weeks. Cancer patients do this for months, for years!”
Her advice? Stay positive, stay focused and stay informed.
“Attitude is huge and knowledge is power,” she said. “Right now, it’s good to educate yourself, but you want to find the right resources and avoid stories that feed into the panic. The more informed you are, the more you’ll feel in control of what’s happening.”
Pacing yourself is also key.
“I feel like I’m back in survival mode here,” said Liza Bernstein, a 54-year-old artist, patient advocate and three-time cancer survivor from Los Angeles. “But you can't do it all at once. You have to be able to prioritize. It’s important to remember what we can and cannot control.”
Her advice for those dealing with the sudden stress of social distancing and looming disease?
“Take this moment to moment, hour by hour,” she said. “It’s one of the mantras I used to get through the tough treatment times.”
Anxiety-busting strategies from cancer patients
- I listen to a lot of rock and roll. And disco. I love music, period, but mostly happy, upbeat music that makes me dance and feel like a teenager again. — Breast cancer survivor Cari Roy
- Dark chocolate. It boosts your immune system. And makes you happy. —
Inflammatory breast cancer patient advocate Ginny Mason
- Take time every day and count your blessings. Write out five of them every day. They can overlap but keep them nearby so you can visually see them and remind yourself how blessed you really are. — Lung cancer survivor Randy Broad
- Stick to your routine as much as possible. Get outside — fresh air works wonders. And read. I've got a stack of books. Pets are a godsend, too. — Breast cancer survivor and blogger Nancy Stordahl
- You’ve got to stop watching the news. Only check in twice a day. Try and meditate and think about your happy place. — Breast cancer survivor Susan Ruddick
- Enjoy the gift of time. Seclusion gives people the opportunity to get away from their busy lives and focus on what’s really important, what really matters. It’s not your job or your car or your clothes. It’s your health and your loved ones. —
Leukemia survivor Kristin Kleinhofer
Cathy Leman, a dietitian, nutrition therapist and 59-year-old breast cancer survivor and cancer guide from Glen Ellyn, Illinois, said to focus on the things you can do, not what you can’t.
“It helps to control what you can,” she said. “Focus on food, sleep, exercise, getting outdoors and challenging negative thoughts.”
Learning to live with uncertainty
Cancer patients and caregivers, by necessity, have to become adept at living in limbo. Will the cancer come back? We don’t know. Will we be alive in two years? Again, undetermined.
It’s maddening. It’s also a way of life.
How do patients maintain their equilibrium when the ground starts to shift, as it's been doing since the pandemic hit?
A 39-year-old Washington, D.C., woman who asked that her name not be used because she’s not public with her metastatic cancer status, said she turns to nature to help her stay balanced.
“Walking outside reduces my anxiety,” she said. “I go to nature for a walk. I meditate and call my friends and family and laugh together. I also sleep long hours and don’t watch a lot of television.”
Tambre Leighn, a certified professional coach from Los Angeles, said she’s been using “every darn tool I have to stay grounded” during the COVID-19 crisis, just as she did while acting as caregiver for her late husband, who died of Hodgkin lymphoma in 2001.
“'This too shall pass.' These words soothe me,” she said. “I use them when life is great, to remind myself to be grateful, and during the challenges.”
“A person can be sad, unhappy or stressed and still, ultimately, be resilient. Resilience is not the absence of feeling stressed but finding a way to cope with it. It’s OK to be a mess sometimes.”
— Fred Hutch psychologist and public health researcher Dr. Salene Jones
Leukemia patient Kristin Kleinhofer is incredibly familiar with social distancing to avoid infection. She's been practicing it for years as a cancer patient undergoing numerous immunocompromising therapies. Photo courtesy of Kristin Kleinhofer
SCCA psychiatrist Dr. Nicole Bates, who splits her time between patients with cancer and those without, said uncertainty can either demoralize or empower people. Some cancer patients, she said, become depressed or anxious, while others develop “incredible resilience.”
“So many of us are grappling with the initial affront and lack of control,” she said, regarding the current crisis. “I’ve been struck by how my patients find strength through uncertainty, how they use it to crystallize priorities for living each day.”
Fred Hutch psychologist and patient outcomes researcher Dr. Salene Jones described resilience as the ability to adapt to stressful events.
“A person can be sad, unhappy or stressed, and still, ultimately, be resilient,” she said, pointing to resiliency tips recently published by the American Psychological Association. “Resilience is not the absence of feeling stressed but finding a way to cope with it. It’s OK to be a mess sometimes. Just not all the time.”
Stay connected with others — and yourself
Cancer patients have also been staying connected, while apart, for years.
#BCSM (short for “breast cancer social media”) holds weekly Twitter chats, drawing patients and survivors from around the world. Ditto for other patient communities on Twitter, including for brain cancer, lung cancer, pancreatic cancer and many more. People living with disease also regularly gather in closed Facebook groups or vast online patient communities like Inspire, Smart Patients, Colontown and others to ask for advice, grouse about side effects and gain strength from others.
“It’s easy to become isolated and lonely,” said Renee Kaiman, a 38-year-old metastatic breast cancer patient and mother of two from Toronto, Canada. “Right now, it’s good to reach out to people via FaceTime or have phone calls. Try to do things you enjoy to keep your mood up.”
Staying connected with yourself is also key, especially when dealing with isolation and angst.
“This is a great time to explore creative projects, to listen to music, to try new recipes they’ve never tried before,” Kleinhofer said. “We can’t control what’s happening right now, but we can control how we respond to it. Things may seem crazy but every day there’s something to be thankful for. Find what makes you happy and focus on that, whether it’s family or friends or the sound of birds chirping outside. And if you start to spin out of control, that’s when yoga, meditation and mindfulness can come into play.”
“So many of us are grappling with the initial affront and lack of control. I’ve been struck by how my patients find strength through uncertainty, how they use it to crystallize priorities for living each day.”
— Seattle Cancer Care Alliance onco-psychiatrist Dr. Nicole Bates
Breast cancer survivor Dennis Keim decided now is the perfect time to learn a new instrument.
Leman, who had to celebrate her birthday in quarantine, decided to throw a “global virtual dance party” (she also danced daily during her cancer treatment). Now it’s become her daily routine.
“In times of uncertainty, we can always count on the predictable rhythm of music,” she said. “Movement soothes, alleviates stress, moves emotion through and out. We need that now more than ever.”
Breast cancer patient Dennis Keim, a 66-year-old retired teacher from Lincoln, Nebraska, said he’s using his newly mandated alone time to learn a new instrument.
"I ordered a ukulele for self-isolation days to come,” he said. “My goal is to be able to play this late 1890s-era tune. I love those old, largely-lost-to-history tunes."
Jones, the Hutch psychologist, emphasized the importance of coping with stress in such positive ways.
“Do things that help you,” she said. “For someone that’s extroverted, that could be regular FaceTime calls with friends and family. For others, it could be exercise, meditation or reading a book. Find what makes you feel better.”
Even in the midst of cancer, people look for silver linings. That’s no different for COVID-19. Some believe others will gain perspective.
"One thing that helps me is to remind myself that many friends with metastatic cancer practice social distancing, and even self-isolating, every day," said breast cancer survivor Nancy Stordahl, of Menomonie, Wisconsin. "They're used to taking precautions and being extra careful. It may be hard for us, but it's part of their daily lives and always will be. It kind of puts things in perspective."
Ghecemy Lopez, who now works as an advocate for underserved patients, was diagnosed with breast cancer at the age of 30, then thyroid cancer at 32. Now 39, she’s living with mast cell activation syndrome, an immune disorder she believes was triggered by treatment.
She hopes the COVID-19 crisis will help people find more empathy.
“I used to get comments from people who thought I was ‘exaggerating’ my immuno-related issues,” she said. “Now the world is going to experience for a few weeks what cancer survivors, the elderly or immunosuppressed people feel on a daily basis. My hope is that during and after this pandemic situation, everyone becomes more mindful of the needs of others.”
Kleinhofer sees signs of that already.
“I’ve seen people sharing amazing resources,” she said, pointing to the museums and performances that are offering free livestreaming as well as authors, artists and celebrities providing online doodling lessons and readings for kids. “Healthy people on [the neighborhood website] Nextdoor are offering to get groceries for those who are elderly or immunocompromised. People are stepping up.
“You see that during a cancer journey and in times of crisis like now,” she said. “You see the pure beauty of the human spirit.”
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at email@example.com.
Posted in: Emotional/Mental Health