Pandemic Deepens Cancer's Stress And Tough Choices

Aug 3, 2020
Originally published on August 3, 2020 1:31 pm

Alexea Gaffney battles health issues every day on multiple fronts. As an infectious disease doctor in Stony Brook, N.Y., she treats patients who have COVID-19. And two years ago, at age 37, she was diagnosed with stage 3 breast cancer.

As a result, the physician and single mom, who is also home-schooling her 8-year-old daughter these days, is still under medical treatment for the cancer. And that makes her more vulnerable to the virus.

Gaffney says navigating life from minute to minute feels like a minefield of risks — ones she mitigates with face masks, protective gowns and lots of hand-washing.

"It doesn't stop me from getting nervous every single day: 'Is this the day that it gets me?' I anticipate living with this kind of fear for a very long time to come," Gaffney says.

The health threat posed by the coronavirus pandemic is particularly intense for people fighting cancer. Medication weakens the immune system. Cancer treatments are often delayed. And many have lost their jobs and, along with that, their health insurance benefits.

A recent survey by the American Cancer Society found that nearly half of cancer patients say the pandemic has affected their mental health and their ability to pay for cancer treatment. An even greater share — 67% — say they worry about the impact that relaxed rules around social distancing in their state or community will have on their health.

"Insurance is a major predictor of whether someone can stay in treatment, and so we know it's a risk factor," says Dr. Laura Makaroff, senior vice president for prevention and early detection at the American Cancer Society. "As the pandemic continues, the number of people who are worried about their ability to get care that they need or continue in treatment is going up."

For some cancer patients and their families, daily life can feel like a string of life-or-death choices that pit the risks of catching the virus against other dire downsides: Should I brave the hospital for cancer treatment — or delay it and risk relapse? Should I continue going to work, or looking for work — or stay home and risk the financial fallout? Do I send the kids to school — or try to home-school and keep them isolated from their friends?

Even Gaffney, a physician and expert in infection, says she agonizes over these decisions and then torments herself worrying about the consequences.

"It's so hard navigating all of this as both a physician and as a patient — it's hard on both sides of it," she says.

Her nephew's high school graduation was one recent example. He completed his studies online, graduating with honors, Gaffney says — a particularly notable accomplishment this year.

"He did all of that with all the stress and turmoil of everything that's happening in the world around him: COVID, racial inequality and protests," says Gaffney, her voice swelling with pride. "He defied the odds, and it's like, we're going to celebrate that — it's too important not to celebrate."

But first, her extended family had to weigh many risks because they live in New York City, the early epicenter of the virus, and many of them work in essential jobs where social distancing is difficult.

They settled on a barbecue in Gaffney's backyard. Everyone took special precautions — serving separate trays of food and pitchers of drinks on tables set far apart and repeatedly sanitizing the bathroom door and faucet.

"It was such a big to-do," she recounts. "And when it was done, I was just freaking the hell out the whole time," fretting over whether all the sanitizing and social distancing measures were sufficient.

Four days later, her mother called to report that her stepfather — who'd had kidney cancer and other underlying health problems — had come down with symptoms of COVID-19.

Gaffney assumed the worst and berated herself, until his test for the coronavirus came back negative.

Marlee Kiel is an oncology social worker for CancerCare, an organization that offers patients counseling and support, and says she often hears stories like Gaffney's from her clients. The level of persistent anxiety among cancer patients is staggering, Kiel says. "All of the stressors that have already existed for cancer patients — and now they're managing everything all at once on triple the scale."

Chief among their worries, Kiel says, is money. Many patients have lost jobs and, often, their health insurance coverage along with that. For many, she says, alternatives for short-term coverage, such as COBRA plans, are still too expensive, and Social Security disability payments usually aren't enough to cover rent and other basics.

So many cancer patients are pushing themselves to work — despite the risks of infection, Kiel says. Some delay treatment as they try to find emergency funds or negotiate payment with hospitals and drug companies.

Roxana Guerra, who has metastatic breast cancer, has been trying to avoid large crowds this summer, while working and taking care of her 11-year-old son, Enrique.
Roxana Guerra

The isolation from family and friends is not only an emotional burden; it also adds to the patient's financial load because those loved ones aren't available to provide free babysitting, rides to treatment or meal deliveries. "All of that support is now cut," Kiel says.

Outsourcing tasks like grocery shopping isn't an option for Roxana Guerra, a single mom living in Alexandria, Virginia. Guerra, who has metastatic breast cancer that has spread to her ovaries, lives near her father, and she worries his age also puts him at high risk of doing poorly if he catches the coronavirus.

Meanwhile, her job as a legal assistant was recently cut to part time. Though the financial hit has been difficult, she's thankful to still have health insurance. So when her boss asks, she finds ways to get to the office, doing her best to avoid crowds.

"I'll come once a week when it's not that busy in the building," she says, "or I can even come on a Saturday."

With school and camps closed, Guerra is also trying to fill her 11-year-old son Enrique's days with activities once occupied by soccer and friends — all while fighting the fatigue and other side effects of her cancer treatment.

"He's the reason I do these things, and I have to continue doing what I can, as long as I have the energy to do it," Guerra says.

Children, family, making memories are all priorities — priorities first shifted by cancer and now by the pandemic.

This year Abigail Johnston scrapped plans to take her two boys — ages 5 and 7 — on an Alaska cruise and a trip to her husband's native Jamaica. Johnston, who lives in Miami, was diagnosed with advanced metastatic breast cancer three years ago, when she was 38.

"If you look at the limited life expectancy that we are looking at already and you layer on top of that the COVID pandemic and the amount of things that have been canceled, eliminated — you're taking away the opportunity to complete a bucket list," Johnston says.

Life was already too short, she says. And now it must remain on hold.

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The threat from COVID-19 is particularly intense for those fighting cancer. Medication weakens their immune systems. Treatments may be delayed. Many have lost jobs and insurance coverage. So daily life can feel like a string of life-or-death choices. NPR's Yuki Noguchi has the story.

YUKI NOGUCHI, BYLINE: I reach Alexea Gaffney early one morning in the kitchen of her split-level ranch home. She lives on a tree-lined street in Stony Brook, N.Y. - not far from family - and perilously close to the early epicenter of the virus. She looks onto a backyard with a wooden swing, gazebo and an above-ground pool, once the hub for social gatherings hosted by Gaffney and her 8-year-old daughter Kennedy.

ALEXEA GAFFNEY: And you probably hear my eggs frying in the background, which I'm just about done with (laughter).

NOGUCHI: Gaffney is fortifying herself for battles fought on many fronts. She's an infectious disease doctor treating patients with COVID. She's also a single mom, homeschooling Kennedy. And two years ago, at age 37, she was diagnosed with stage 3 breast cancer. So life is a minefield of risks, one she mitigates with face masks, protective gear and lots of hand-washing.

GAFFNEY: It doesn't stop me from getting nervous every single day about - is this the day that it gets me? And, you know, I anticipate living with this kind of fear for a very long time to come.

NOGUCHI: People living with cancer in the time of coronavirus must navigate many tough choices, ones that pit the risks of catching the virus against other dire downsides, like braving the hospital for cancer treatment versus delaying it and risking relapse or continuing to work versus not working and jeopardizing health insurance or sending the kids to school versus home-schooling and keeping them socially isolated. Even Gaffney, a physician and expert in infection, says these decisions are agonizing, and no option comes free of fear or worry.

GAFFNEY: It's so hard navigating all of this as both a physician and a patient. It's hard on both sides of it.

NOGUCHI: She says normal events become emotionally fraught. Take, for example, her nephew's graduation.

GAFFNEY: He finished high school with an associate's degree in computer science or engineering, things that I can't even begin to comprehend. He graduated with honors.

NOGUCHI: Her nephew, like Gaffney, is Black. Her voice swells with pride for him.

GAFFNEY: And he did all of that with all the stress and turmoil of everything that's happening in the world around him - COVID and racial inequality and protests and people...

NOGUCHI: And the painful specter of police brutality.

GAFFNEY: He defied the odds, you know? And it's like, we're going to celebrate that. It's too important not to celebrate.

NOGUCHI: But, first, her family weighed the many risks - that most of Gaffney's family live in high-rises in New York City, that her mother and pregnant sister work for the Metropolitan Transit Authority that runs the city's subways and buses.

GAFFNEY: There's no social distancing when you work for the MTA. You're going to work every day.

NOGUCHI: They settled on a backyard barbecue, taking every precaution.

GAFFNEY: One set of food for every table. If your table ran out of food, that was it. And separate drinks for every table. Like, it was a big to-do.

NOGUCHI: Yet when life hangs in the balance, no measure seems sufficient.

GAFFNEY: Wipe down the faucets and the doorknob when you come out of the bathroom. Like, it was such a big to-do. And when it was done, I was just freaking the hell out the whole time. Oh, my God, did we stay far enough? Did everybody wear their mask? OK, some people took their masks down. You know, was there enough hand sanitizer? It feels like insanity.

NOGUCHI: And Gaffney wasn't the only one at risk.

GAFFNEY: Four days later, my stepdad, who's chronically ill - he's on dialysis, he's had kidney cancer, he's waiting for a kidney transplant - got short of breath.

NOGUCHI: Gaffney assumed the worst and berated herself until his test for COVID-19 came back negative. Marlee Kiel says the level of anxiety among cancer patients is staggering. She's an oncology social worker for CancerCare, a support group.

MARLEE KIEL: All of the stressors that have already existed for cancer patients and now they're managing everything all at once on triple the scale.

NOGUCHI: Chief among them, she says, is money. So many patients have lost jobs and often insurance coverage with it. For many, alternative insurance is still too expensive. So some push themselves to work. Some delay treatment and try to find emergency funds or negotiate payments with hospitals and drug companies. The isolation from family and friends is not only an emotional burden, she says; it also adds to the financial ones.

KIEL: Delivering meals, driving to treatments, providing child care - those little things that we don't really think about that add up, all of that support is now cut because the social distancing. You can't be near family or friends.

NOGUCHI: Take Roxana Guerra, who has advanced ovarian cancer.

ROXANA GUERRA: As a single mom, I mean, I've had to do things that I know I probably shouldn't be out there. But, like, I'll go to the grocery store.

NOGUCHI: Guerra lives in Alexandria, Va. Her father lives nearby, but his age also puts him at high risk. Her legal assistance job got cut to part time, but she's thankful to still have health insurance. So when her boss asked, she found a way to get to the office.

GUERRA: It's a three-story building, and there's all kinds of people coming in and out. So I was like, you know, I'll come once a week, when it's not that busy in the building, or I can even come on a Saturday.

NOGUCHI: In addition, she has her 11-year-old son Enrique. She tries to fill the space left by school, soccer and friends, all while fighting the fatigue and other side effects of treatment.

GUERRA: He's my reason. He's the reason why I do these things. And I have to continue doing what I can as long as I have the energy to do it.

NOGUCHI: Children, family, making memories - the pandemic adds to the interference from cancer. Abigail Johnston had to scrap plans to take her two boys, aged 5 and 7, on an Alaskan cruise and a trip to her husband's native Jamaica. She was diagnosed with advanced metastatic breast cancer three years ago, when she was 38.

ABIGAIL JOHNSTON: If you look at the limited life expectancy that we are looking at already, layer on top of that the amount of things that have been canceled, eliminated, you're taking away the opportunity to complete a bucket list.

NOGUCHI: Life was already too short, she says, and now it must remain on hold.

Yuki Noguchi, NPR News.

(SOUNDBITE OF CODES IN THE CLOUDS' "WASHINGTON") Transcript provided by NPR, Copyright NPR.

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