In January of this year, I was diagnosed with breast cancer, just ten months after the start of the coronavirus pandemic. To be told you have cancer is one — very big — moment, but to learn that you will go through surgeries, appointments, and treatments during a pandemic is beyond terrifying. I know I’m not alone. According to the World Health Organization, in 2020, across the globe, there were “2.3 million women diagnosed with breast cancer.” In 2018, the CDC reported that almost 255,000 women were diagnosed in the United States. That’s a whole lot of women.
The day I got the call that the mass I found in my chest wall during a self-exam was a breast cancer recurrence, I felt instant dread. This wasn’t my first rodeo with pink ribbons, medical procedures, and multiple appointments. However, it was my first time facing a health crisis in the midst of a global pandemic. My first oncologist told me that I needed to prepare myself for a long, difficult year.
With cancer comes undeniable anxiety, both short-term and long-term. I had to wait on test results, surgery dates, scan appointments, and meeting my new cancer team. I also realized, very quickly, that I would be attending the vast majority of all my cancer appointments alone, without the support of my husband or another loved one. Most facilities banned any visitors to accompany patients. I also knew that chemotherapy would automatically put me into the immunocompromised category.
In movies and shows, a woman facing breast cancer sits in the sunlight, in a chemo chair, with a dear friend or partner holding her hand. Not once did I experience the gentle infusion of chemotherapy, the drugs killing any residual cancer cells, while my husband entertained me with bad jokes or comforted me with sips of water. I am grateful that the oncology nurses tended to my every need — a warm blanket, an extra pillow, a drink refill — but it wasn’t the same as having someone familiar sit beside me and promise me that everything was going to be all right.
I attended each lab appointment, scan, consultation, surgery, and treatment on my own. I was slowly gaining confidence, despite the chemotherapy that physically weakened me.
Alyson Pistole, a thirty-five-year-old from Tennessee, shared with me her breast cancer experience, one that began just a month into the pandemic.
Alyson found a lump in April 2020. She assumed it was a clogged duct or a milk cyst, as she was in the midst of nursing her young child. She made an appointment to talk to her doctor during her follow-up appointment, but that was moved out an additional two weeks, then another two weeks, and then a month due to COVID. She then decided to see her general practitioner who promptly ordered a mammogram and ultrasound. From there, Alyson was told she needed a biopsy.
As if delayed detection wasn’t enough, Alyson’s family lost their health insurance. Her husband, who is immunocompromised, lost his job. She shared with me in an interview that, “The hospital refused to complete my biopsy until a new insurance policy was on file.” She attempted to secure Medicaid, an arduous process (due to, no surprise, the pandemic). When she was finally able to gain insurance and have her biopsy, she noticed how busy the medical office was. Her nurse informed her that the office was playing “COVID catch up.” Patients were flocking to get their mammograms after skipping them when the pandemic started.
Alyson was diagnosed with breast cancer by phone in late August. She had surgery, a bilateral mastectomy and flat closure, in October. She recalls that only one person, her husband, was allowed to bring her to the hospital and she should anticipate staying overnight with no visitors. Thankfully, the COVID numbers were low enough on her surgery date that the hospital allowed her husband to stay with her. However, the hospital was fairly full, and Alyson recovered in the maternity ward.
This was just the beginning. Alyson’s cancer was at stage 3, grade 2, and her removed tumor was 88 millimeters. Twenty-two of her twenty-four lymph nodes tested positive for cancer. Two weeks after her mastectomy, she got a chemo port implanted, and two weeks after that, she began four cycles of dose dense chemotherapy. Once she finished chemo, she began thirty proton therapy treatments. She is currently NED, no evidence of disease.
Reading her list of treatments reminded me of my own journey. Of Alyson’s 94 (yes) appointments related to her cancer, her husband was allowed to attend five of them with her. The rest of them she attended solo. She and her husband had to navigate the financial, emotional, mental, and physical crisis that cancer treatment creates.
Due to their immunocompromised status, they weren’t able to accept much outside help, at least not until caregivers were fully vaccinated. She shared with me that all celebrations, including holidays and birthdays, were done over Zoom. Alyson recalls her husband and her children making the hour trip to and from the infusion center, dropping her off and picking her up from treatments. Alyson was, like me, too medicated or too sick to safely drive herself.
Alyson’s children were also impacted by her journey. She opted for remote learning for her oldest, to limit his COVID exposure, and she opted not to enroll her middle son in preschool. Alyson’s husband took a job collecting trash from apartment complexes at night so that during the day he could watch the kids and help Alyson. Her job as an in-home behavioral analyst for children with autism went to a remote job with reduced hours, significantly reducing the family’s income.
COVID precautions are critically important for cancer patients, with our weakened immune systems. Exposure to the virus, much less testing positive, can not only pose danger to our lives, but it also delays our treatment plans. Alyson experienced this first-hand when her oldest child, after returning to school in person, had COVID. Alyson’s husband also tested positive, and Alyson had to miss her treatment, pushing it back ten days. She had side effects from missing her appointment, including headaches and nausea. She admits she was frustrated, but it would have been worse had she had to miss a surgery, a chemo session, or a radiation treatment.
Her family, like mine, was able to watch her ring the golden bell, signifying the end of treatment. For my family, it meant, both times, standing outside and holding up signs. They couldn’t hear my words or the bell ringing, but they could watch. I desperately wish they could have been standing beside me in those moments, but I understand that ultimately, we have to protect the staff and fellow cancer patients.
Alyson wants others to know that though she is disease free, she doesn’t feel free from breast cancer. There are reminders everywhere, and I concur. From the scars across our chests, the side effects from current treatments, mental health struggles from cancer trauma, and the physical changes, like our hair, we are constantly reminded of our battle through both cancer and COVID. There isn’t an area that cancer, or COVID, hasn’t touched. Alyson adds, “Even if I’m lucky enough to never experience a recurrence, I will be fighting breast cancer for the rest of my life.”
It’s absolutely exhausting to battle cancer during a pandemic. When I hear the “freedom” cries from anti-maskers and anti-vaxxers, all I can think is that they are so fortunate to have their health — for now. Alyson and I both know what it’s like to sit among fellow cancer patients, knowing that the decisions others make and the state of the pandemic can mean life or death for us.
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