Lessons Learned From Cancer Patients

By Diane Mapes

For the immunocompromised and those with disease, social distancing and uncertainty are a way of life. Daily walks, gratitude, and dancing help.

You’re washing your hands like crazy. Staying six 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.”

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.”

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.”

This article by Diane Mapes is reprinted with the permission of the Fred Hutch News Service, where it originally appeared on March 20, 2020.

For resources on COVID-19 as it applies to the oncology community, please visit ACCC’s continually updated Coronavirus Resource page. ACCC members can also access ACCCExchange, a forum that allows them to communicate in real time with their colleagues about how the COVID-19 virus is affecting their communities and their patients.