In July of 2018, my husband and I learned that my recent scans showed Stage IV metastatic breast cancer widely distributed in my ribs, spine and pelvis. I had been diagnosed with Stage III breast cancer in 2011, treated with surgery, chemotherapy and radiation, and had been doing well. However, I developed achy chest wall pain in June 2018 that led to the workup revealing advanced cancer. Once diagnosed, cancer haunts the recesses of the mind, so I was not totally surprised by the news. Still the diagnosis of metastatic cancer threw the proverbial wrench into the works of my life and that of my family’s. As a result, I spent the last 18 months learning to live with advanced cancer and its associated treatment. My husband and I made major changes in our lives. I stepped down from my administrative position at the University of Wyoming, he opted not to teach and focus on this work as an environmental consultant and we downsized to a smaller house with all we needed on one floor. After a year of being back on the faculty at UW, I made the decision to retire in May 2020 to spend time with family and friends and involve myself in some volunteer work that I had put off due to the demands ofwork. Despite the uncertainty, my husband and I were looking forward to this next phase of life.
And then in early March of 2020, coronavirus entered our world. My husband and I were in Lake Placid watching our daughter and the UW Nordic team compete at the USCSA nationals. I wondered if I was making a mistake to travel given my suppressed immune system from the oral chemotherapy I take, but even Anthony Fauci, at least in his public statements, didn’t seem too concerned saying we weren’t at the point we needed to change our daily lives because of the coronavirus. The airlines were flying, so my husband and I landed in Albany, New York on a Sunday evening and stayed with friends. In the morning, our friend, who was watching the news, yelled upstairs as my husband and I were packing our bags for our drive to Lake Placid. We watched in disbelief as the stock market plummeted requiring temporary closure of the stock exchange, one of the first of several dramatic drops over the next couple of weeks.
With some old friends from Connecticut, we settled into our Airbnb apartment outside of Lake Placid near the ski hill where the Nordic competitions were held. We were gripped watching the news as the numbers of cases increased and schools closed down in the east. We had made arrangements to pick up our daughter’s high school friend so she could come to Lake Placid to see our daughter, but Middlebury, where she is a senior, closed down early that week and she was not able to leave nor were we able to visit. We also had planned to meet my nephew from Montreal near the US-Canadian border, but there were concerns that the border would be shut down and my nephew and his family could get stuck in the USA (the border did close about a week later).
We had looked forward to our 9 days in New York enjoying the Adirondacks, one of our favorite places, but I had a growing realization that I was one of the “at risk” people that the experts were saying needed to be vigilant and shelter away from others. I called my brother, a public health official, to get his advice about the safest way to get back home. I was able to arrange to come home early taking shorter flights that would hopefully lessen the likelihood of exposure. My husband and I kept our distance as much as possible in the airports, which was not all that difficult given the already decreasing number of people travelling. We each had a bottle of hand sanitizer which we used frequently, and we tried to minimize exposure to things like the seatback tray tables on the airplanes which reportedly are a haven for a variety of microbes. We arrived home safely, quarantined ourselves for 14 days and were relieved not to have any signs of illness at the end of 2 weeks. Fortunately, our daughter and the rest of the team also made it home safely and were illness free after 14 days, too.
Despite the President’s assertion that this would all be over by Easter, life did not return to normal, whatever that is, after our 14-day quarantine. Wyoming, while not officially closing down as many states did, banned gatherings of more than 10, stopped all but essential business, and strongly advised everyone to follow social distancing guidelines and wash hands frequently. UW sent students home for spring break in mid-March with the rest of the semester to be taught on-line. Like so many others, my husband and settled into a new way of working. He set up his home office on the dining room table, while I taught and wrote from the desk in our fireplace room. Other than hassles of managing competing Zoom meetings, the transition went smoothly. We were grateful on a daily basis that our daughter is 23 and living independently as a graduate student, and that we were not called upon to home school her doubting that we would have excelled as her teachers.
For a short period of time, metastatic cancer receded from my consciousness. COVID-19 took its place and dominated our lives.We watched PBS News hour and poured over the Boomerang and the New York Times hungry for the latest morbidity and mortality numbers, anxious for information and reassurance from Dr. Fauci and other public health and communicable disease experts, and mortified by the President’s miscommunication and inability to take any responsibility for the federal handling of the pandemic. However, after several weeks, we settled into our new shelter-at-home-life and while COVID-19 continued to be prominent in our lives, metastatic cancer returned to its old role flitting in and out of my mind with its unwanted reminders of life’s uncertainty and the inevitability of my death.
Always keen to know more, I read articles about how those with cancer are coping with COVID-19. Like others, those with cancer have the same trials managing work from home or figuring out how to safely work in essential businesses, trying somehow to be substitute teachers for their children, managing the complex care of aging family members, negotiating the new shopping world to get needed groceries and other supplies, and figuring out ZOOM, HouseParty, FaceTime, MicrosoftTeams and the many other video conferencing services to stay connected with friends and family. However, clearly having cancer adds to the complexity of life during a pandemic presenting multiple cancer-related hardships, e.g., getting needed diagnostic tests, surgeries and chemotherapy, managing family and friend interactions given a depressed immune system, and coping with yet another significant challenge when emotional and physical reserves may already be depleted to name a few.
Interestingly, several writers have argued, not denying the many challenges, that having or having had cancer actually helps during times like this given the resilience gained from experiencing cancer that requires figuring out how to live meaningfully despite lots of uncertainty and vulnerability. There is some truth to this. I’ve had to learn to keep the distressing thoughts about metastatic breast cancer, which I’ve determined will not go away, in the periphery of my daily life. It takes intentional shifting of the mind away from the thoughts to other more vital matters in order to hold them at bay. I’ve learned to focus my life on the most important things, such as undertaking some new volunteer activities that I’ve put aside during my until recently busy academic life. I’ve reconnected with family and new and old friends and have cherished the deepening of these relationships.
No doubt, my relatively newfound skills and knowledge of living with uncertainty and vulnerability have helped me with the daily ups and downs of the coronavirus circus. Other than a few brief panicky moments, I’ve been able to acknowledge the fact that none of us, including me, can control this virus in such a way to feel completely safe. Being vigilant and prudent are important,but even carefully following recommended guidelines, I can’t reduce my risk to zero. Along with so many others, I’ve learned how to have virtual coffee breaks, happy hours or lunch with friends, family and colleagues. As the weather warmed up this spring, I started visiting with people in the front yard with outside furniture strategically placed 6-8 feet apart and in such a way that the sun and prevailing wind, which is ever present in Laramie, will kill any aerosolized particles. We found a way to celebrate my mother’s 90 birthday with a drive by parade and Zoom sessions with family in Michigan, Quebec,Colorado, and Washington. I’m contributing to my community by working with health and social service nonprofits in my county as they provide services in away that safeguards staff and clients while they prepare for what will most likely be a long economic downtown in Wyoming.
But just like advanced cancer, the specter of COVID-19 has raised some uncomfortable issues. That doesn’t mean all things are bad since the pandemic started. I have loved the move to telehealth visits with my oncologist, so I do not have to drive so often to Ft. Collins for appointments. In addition, the interaction is more intimate and direct via telehealth. I’ve continued to get other needed cancer care at the local hospital where I have felt safe and well-attended to.
However, all is not bliss in the COVID-19 world just because I have cancer. The pandemic has once again reshaped myself-identity. I have always seen myself as an athletic, fit woman who could strap on a heavy backpack and hike up into the Wind Rivers or Absarokas for a week in the wilds. Advanced cancer certainly challenged that image. While I still exercise regularly including hiking in the mountains, the rogue cells have damaged my bones, with a rib fracture or two around the time of my diagnosis in 2018, making some of my former activities too risky. A fall would most likely be very painful and detrimental to my overall health.
Yet COVID-19 challenges my idealized identity even more. My white blood cells, which are critical to fighting infection, are chronically low because of the treatments I take for my advanced cancer. I have few side effects from the medications and have little in the way of pain, so I look healthy to most people, but my immune system may not be able to handle a serious coronavirus infection. It’s hard for me to belief that I am one of those COVID-19 at-risk people. Consequently, I struggle with the need to be vigilant and physically isolate for many months. How can I maintain my sanity and my relationships without hugs, gossiping at a coffee shop with friends, long conversations about life with my husband and daughter (who lives in a different household), and sharing meals with my extended family?
Most jarring is that COVID-19 has disrupted my concept of death. Coming to grips with mortality is never easy but with advanced cancer, thoughts of death are never far away. For me, it has been terribly distressing to see pictures on the news of COVID-19 patients in New York City clearly very ill and hooked up to ventilators. But even more troubling and startling is the realization that I could end up in that predicament. Prior to the pandemic, I thought I would know when my death was near and the dying process would occur gradually over several months giving me time with my family and friends and time to complete unfinished business. I would be accompanied by expert hospice nurses who would support my family and control distressing symptoms such as pain. But people with COVID-19 in the hospital often die within a week or two, with hard to manage shortness of breath, and may not be lucid or communicative. Loved ones are unable to hold hands or kiss their family member good-bye. This is not the kind of death I want. I have had those uncomfortable conversations with those who are my healthcare proxies, telling them (and myself) that I am very leery of being intubated and would only want to do so if there were no signs of multi-organ disease and there was a reasonable chance I could survive.
Otherwise, I want to be at home in the company of my family and with hospice involved to control symptoms and provide support.
COVID-19 has turned our world upside down. Having advanced cancer has helped me in some ways cope with the pandemic, but it has also created some new challenges. However, ultimately it is critical that we all go on living, enjoying my friends and family, and contributing in a positive way to my community and my state.