In January of this year, I was diagnosed with breast cancer, just ten months after the start of the coronavirus pandemic. Being told you have cancer is a – very big – moment, but to hear that you will have surgeries, appointments and treatments during a pandemic is beyond terrifying. I know I’m not alone. According to the World Health Organization, in 2020 there were “2.3 million women diagnosed with breast cancer” around the world. In 2018, the CDC reported that nearly 255,000 women were diagnosed in the United States. That’s a lot of women.
The day I got the call that the mass I found in my chest wall during a self-exam was a recurrence of breast cancer, I immediately felt scared. This was not my first rodeo with pink ribbons, medical procedures and multiple appointments. However, it was the first time I faced a health crisis in the midst of a global pandemic. My first oncologist told me to prepare for a long, difficult year.
With cancer comes undeniable fear, both short-term and long-term. I had to wait for 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 on my own, without the support of my husband or another loved one. Most facilities prohibited visitors from accompanying patients. I also knew that chemotherapy would automatically put me in the immunocompromised category.
In movies and shows, a woman with breast cancer sits in the sunlight, in a chemo chair, with a dear friend or partner holding her hand. Not once have I experienced the gentle infusion of chemotherapy, where the drugs killed any remaining cancer cells, while my husband entertained me with bad jokes or comforted me with sips of water. I’m thankful that the oncology nurses took care of all my needs — a warm blanket, an extra pillow, refill a drink — but it wasn’t the same as sitting next to a friend and promising me everything would be okay.
I attended every lab appointment, scan, consultation, surgery and treatment alone. I slowly gained confidence, despite the chemotherapy that weakened me physically.
Alyson Pistole, a thirty-five-year-old from Tennessee, shared with me her experience with breast cancer, an experience that began only a month after the pandemic.
Alyson found a lump in April 2020. She assumed it was a blocked duct or a milk cyst as she was nursing her young child. She made an appointment to talk to her doctor during her follow-up appointment, but it was moved another two weeks because of COVID, then another two weeks, then a month. She then decided to see her primary care physician, 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 told me in an interview that “the hospital refused to complete my biopsy until a new insurance policy was submitted.” She was trying to secure Medicaid, an arduous process (because of, no surprise, the pandemic). When she was finally able to get insurance and get her biopsy, she noticed how busy it was in the medical office. Her nurse told her the office was playing “COVID catch-up”. Patients flocked to get their mammograms after skipping them when the pandemic started.
At the end of August, Alyson was diagnosed with breast cancer by telephone. She underwent surgery, a bilateral mastectomy, and a flat closure in October. She remembers that only one person, her husband, was allowed to take her to the hospital and she would have to anticipate a night without visitors. Fortunately, on her surgery date, the COVID numbers were so low that the hospital allowed her husband to stay with her. However, the hospital was quite full and Alyson recovered in the maternity ward.
This was just the beginning. Alyson’s cancer was stage 3, grade 2, and her tumor removed was 88 millimeters. Twenty-two of her twenty-four lymph nodes tested positive for cancer. Two weeks after her mastectomy, she had a chemo port implanted and two weeks after that, she began four cycles of dose-dense chemotherapy. When she finished chemo, she started with 30 proton therapy treatments. She is currently NED, no evidence of illness.
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 with her. The rest she followed solo. She and her husband had to navigate the financial, emotional, mental and physical crisis caused by cancer treatment.
Due to their immunocompromised status, they were unable to accept much outside help, at least not until the health care providers were fully vaccinated. She told me that all celebrations, including holidays and birthdays, were done through Zoom. Alyson remembers her husband and her children making the hour-long journey to and from the IV center, dropping her off and collecting treatments. Alyson, like me, was too medicated or sick to drive safely on his own.
Alyson’s children were also affected by her journey. She chose distance learning for her oldest, to limit his exposure to COVID, and she chose not to enroll her middle son in kindergarten. Alyson’s husband took a job collecting garbage from apartment complexes at night so he could babysit the kids during the day and help Alyson. Her job as a behavioral analyst for children with autism moved to a remote job with fewer hours, significantly reducing the family income.
COVID precautions are critical for cancer patients, with our immune system weakened. Exposure to the virus, let alone testing positive, can not only put our lives at risk, but it also delays our treatment plans. Alyson experienced this firsthand 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, delaying it for ten days. She had side effects of missing her appointment, including headaches and nausea. She admits she was frustrated, but it would have been worse if she had missed surgery, chemotherapy or radiation.
Her family, like mine, could watch her ring the golden bell, signaling the end of treatment. For my family, both times it meant standing outside and holding up signs. They couldn’t hear my words or the bell, but they could see. I really wish they had been by my side in those moments, but I understand that ultimately we need to protect the staff and fellow cancer patients.
Alyson wants others to know that although she is disease free, she does not feel free from breast cancer. There are memories everywhere and I agree. From the scars on our chests, the side effects of current treatments, mental health issues from cancer trauma, and the physical changes like our hair, we are constantly reminded of our battle through both cancer and COVID. There is no area that cancer or COVID has not touched. Alyson adds, “Even if I’m lucky enough to never experience a recurrence, I’ll be battling breast cancer for the rest of my life.”
Fighting cancer during a pandemic is definitely exhausting. When I hear the “freedom” cries of anti-masks and anti-vaxxers, I can only think they are so lucky to have their health – for now. Alyson and I both know what it’s like to be among other cancer patients, knowing that the decisions others make and the state of the pandemic can mean our life or death.