Breast Cancer Awareness 2021: Cancer and COVID: Patients face treatment and isolation and amid the pandemic

Tucson Cancer Conquerors
Cancer Conquerors founder and president Liz Amli (second from left) with Dawn Messer, Ken Harvey, Mary Specio-Boyer and Deb Helig .

The doctor said it was probably nothing. Fatty tissue, if anything. Nina Shelton said she’d like to get a mammogram anyway. The lump didn’t feel like nothing to her, and it didn’t feel normal. She passed the time waiting for her mammogram results with fastidious, furious researching. It was March 2020, and COVID-19 had turned the world into a whirlwind of case infection updates, while also making it feel eerily still.

Shelton had just moved to Tucson a few months earlier, so she didn’t have anyone to bring to her appointment with her. She dialed her sister and brought her to the appointment on speakerphone. She’d researched so much that her cancer diagnosis didn’t come as a surprise, but her bad news felt almost like screaming into a void. She wrote later that, though it felt selfish to say so, it was almost like COVID-19 stole her thunder.

“I felt a little selfish thinking that, but at the same time, I just thought, ‘This is a big deal.’ And my friends and family were so sympathetic and comforting from miles away,” she says. “But it was at the same time thousands of people were dying at a daily rate, and people were in panic mode and wearing masks. It felt like it just diminished my issue a little bit.”

Shelton is the first to acknowledge that, in a lot of ways, she was fortunate. The pandemic made it easy for her to work from home with her suppressed immune system, since almost everyone in her office was working from home as well. She had a friend drive out to stay with her for the first two weeks of chemotherapy, and then her sister came to visit. In another sense, it was just good she’d noticed the lump at all. Institutions across the country are publishing research showing that the number of people coming in for routine annual screenings, including mammograms, declined during the pandemic.

But, in another sense, having cancer during a pandemic meant facing a unique sort of isolation. Shelton didn’t have family in town, but even if she did, they wouldn’t be allowed to accompany her to appointments. Sometimes she would go into work, masked up and sitting far from her coworkers, just to be around other people. Some of her coworkers would bring her meals, or check in on her periodically. It meant a lot.

“I think a lot of people were experiencing loneliness, and the sting, was, I think, a little bit lessened because a lot of people were experiencing it,” she said. “There were people going through their own trauma with their own pandemic issues and they were stepping up to help me in the ways that they could. It was always this back and forth of feeling incredibly grateful and feeling a little pity and anger.”

At the same time that she felt steeped in loneliness, cancer also became something of a constant companion, living with her, telling her what to do and feel, trying to control her. And Shelton felt compelled to learn everything she could about this new shadow following her everywhere. When she read stories about how people with the same diagnosis as her had fared, she says it felt almost like looking up the exes of a person she was now dating.

“Is cancer still affecting them? Has he left? Have they gotten over cancer?” she wondered. 

She says one of her biggest tools to fight against the cancer, and against the potential for inadequate medical care, was using her voice. So, when her doctor told her the lump was probably benign fatty tissue, she insisted on a test. When she was having lung problems during chemotherapy, doctors thought it might be COVID-19, or maybe allergies. Shelton suspected she had a temporary, rare condition in which the chemotherapy was attacking her lungs. Her doctors said it was unlikely, but Shelton insisted on a test. She was right.

“I had to learn to be more vocal about my care,” she says. “I had to learn to be a bigger advocate. That was trial and error: When do I listen to my doctor and where do I push back? But when I spoke up, I pushed back [about the initial mammogram], that literally saved my life.”

Lisa Yiu: “It was very scary.”

Lisa Yiu’s particular flavor of struggle was closer to denial. She felt a breast lump in the shower in November 2020, and mentioned it to her husband, even though she was sure it would be fine. She ate healthily, she’d been exercising regularly since she was a teenager and she only drank the occasional glass of wine at dinner. Still, her husband wanted her to get it looked at right away. She got the call that it was cancer on Thanksgiving Day.

She kept asking herself—and she keeps asking herself—what she did wrong? Was it the hysterectomy she’d had in her 40s? Or the stress from the pandemic? Was it that she’d been drinking a little more than usual (adding a martini into the dinner rotation here and there) to cope with the stress? She’d been on a safari in Africa in early 2020, and arrived home to self-quarantine and COVID-19 chaos. The months of stay-at-home orders threw the whole world out of whack.

“I didn’t think about doing health visits, mammograms,” she says. “All I could think about was, ‘Do I have enough toilet paper? Am I stocked up on canned foods?’”

After they found the cancer, and as the pandemic raged on, Yiu started chemotherapy, and having a weak immune system made social distancing more critical than ever. Now, she says, it felt like there were two things that could kill her: cancer and COVID-19. Going to the store felt dangerous, because other people felt dangerous, like potential sources of infection. 

“My husband couldn’t go to appointments with me, my parents couldn’t go to appointments with me,” she says. “I was really in this alone. It was very scary.”

When vaccinations started rolling out, she was relieved, and her doctor recommended she get one, but it was nerve-wracking. How would her weakened immune system respond? Would the vaccine affect the effectiveness of her chemotherapy? There weren’t yet studies on how the vaccine affected cancer patients, though University of Arizona Health Sciences released one last week that found the Pfizer vaccine is less effective for patients actively undergoing chemotherapy. The first round wasn’t bad, but the second shot had her down for four days—after the week she was already down due to chemotherapy.

Now, she’s on the up-and-up, having recently got her booster shot and finished with her treatments. She’s trying to exercise every day, and enjoying that she now finds herself craving organic vegetables. As she watches her daughter in her first year of college at the University of Arizona, she’s filled with hope for the future. 

Tucson Cancer Conquerors

Shelton, Yiu and dozens of other cancer survivors can be found most Saturday mornings at Brandi Fenton Memorial Park, exercising with Tucson Cancer Conquerors, a local nonprofit established in 2014 and dedicated to empowering cancer survivors by promoting healthy survivorship.

Liz Almli, the organization’s president and one of its founders, is a physician. When she went through breast cancer diagnosis and treatment more than 14 years ago, she says she had a large support network and plenty of resources. But after her treatment was over, she felt unsure about what to do next.

“I remember getting in my car kind of sitting there in the silence thinking, ‘Now what? Do I just wait for it to come back?’” she says. “At least when you’re going through treatment, you’re there every other week. You know you’re doing something to kill the cancer. But when you stop treatment, you feel like you’re waiting for it to come back, and I needed to have a way to do something proactive. And what can you do? Exercise, nutrition, education.”

The group started as a small group of survivors getting together to exercise at the park, but has grown into an organization of more than 100 cancer survivors and “buddies,” who come along for support. They’ve got a book club, a gardening group, retreats and monthly birthday dinners. As Almli likes to put it, they’re not a “sit-in-the-circle-with-a-tissue-box” kind of group.

“TCC is just such a beautiful thing,” Shelton says. “They were such a godsend for me…. You’ve got this whole group of people who understand you in a way none of your friends or family do.”

On Saturday mornings, there are three separate workout groups: The “Get Fit” classes, led by certified personal trainers, are suitable for all levels and take into consideration the healing process of cancer patients. There’s also a “Get Started” group with lower impact exercises, and a third group of people who walk around the park together. Almli, decked out in a TCC shirt, hat and even socks, explains that they encourage people to change walking partners every 10 minutes, so they can get to know more of their fellow survivors.

On Saturday morning, the workouts are all winding down, and we smile and wave at Shelton as she comes back with the walking group. Most everyone is chatty and high-spirited as they begin making their way over to a plaza area near the butterfly sanctuary for morning coffee and announcements.

A woman named Jennifer Moulton, another breast cancer survivor, bounds up to Almli and says she’s thinking about bringing a new person to the group – a friend of a friend who was just diagnosed with breast cancer. They’d met up at Starbucks last week to talk, and Moulton even offered to show the woman how her own reconstructed breasts looked.

“I’ve never met you before—you’re a friend of a friend, and that makes you a friend of mine,” she says. “Let’s go in the bathroom, lock the door. I stripped down. I’m like you can touch ’em, you can look at ’em. Side view, under view.”

Shelton and Almli laugh along knowingly. This fearless sharing of experiences is very much in the spirit of the group, because many of the members recall what it was like to feel clueless and scared at the beginning of their own journeys. Now that they’re further along, they’re happy to tell others a little bit about what they can expect. Almli says its’s not uncommon for people at meetings to ask, “Is anyone here willing to show me their scars?” or, “Is anyone here with implants willing to show me what they look like?” At least a few women raise their hands yes for the offer.

“Without a group like this, especially during this time, I mean, where you do you get the answers?” Yiu says. “How do you get perspective? How do you see someone who’s been through it, and they’re doing great, and they’re happy? And they’re happier than they were before because they’re more grateful from everything they’ve been through?”

Shelton and Yiu both count themselves in the camp of people who are now more grateful for the little things. Yiu jokes that when her arms get sore during a workout, she remembers she’s lucky to have arms at all. Shelton says the isolation of the pandemic and cancer strengthened her relationship with her siblings.

“I’m not going to be here forever,” Yiu tells her daughter sometimes. “But I’m going to be here for a long time. We can enjoy what we have, and just be happy—pandemic or not, cancer or not.”