Amid the two suffocating pandemics Americans confront today — of contagious disease and systemic racism — what can cancer patients do?
Like other people with compromised immune systems, many of us feel too vulnerable to participate in public demonstrations and yet we want to be part of the solution, not simply bystanders in the disaster. Two events clarified this dilemma as I sheltered within my apartment in my small town, Bloomington, in Indiana. The first was a visit to the local hospital; the second was a protest march in support of Black Lives Matter.
In the midst of the pandemic, I knew that I would be very nervous about being exposed to the virus at the Bloomington Hospital. Yet my clinical trial required a blood test. Without the test, I could not receive the next supply of an experimental drug that continues to prolong my life. It never entered my mind that I would become first flabbergasted and later enraged.
At the entrance closest to the infusion center, I stood in a glassed-in foyer where a young woman in a flimsy paper mask sat. “Take off your mask and open your mouth so I can get your temperature,” she said. I expressed surprise and dismay, but then complied. Only after the nurses had de-accessed my port and released me did I have the presence of mind to stop and tell the young woman by the door that she was putting herself at risk. How many people would be breathing directly at her while she took their temperature? What if one of them was asymptomatic and coughed or sneezed? “Yes,” she replied with a grimace. “Other people have said that too.”
Discussing this later in a Zoom meeting, members of my support group wondered why our hospital did not do temperature readings through the ear or on the forehead. “Maybe oral temperatures are more accurate,” one person speculated. “Well, anal is the most accurate,” another commented, “and they haven’t gone that route yet.”
Amid the laughter, I sensed general disquiet, especially among those undergoing chemotherapy in the hospital’s oncology unit. We are all acutely aware that cancer patients remain at greater risk for complications from the coronavirus than the general population. Two recent studies have shown that cancer patients and even cancer survivors are more likely to die within a month of contracting the virus than other people. For the most part, We cancer patients need to continue sheltering in place, using masks and gloves, and practicing social distancing, even while our neighbors venture out and about.
All of us know younger people who are terrified because they are trying to detect whether a mysterious lump or symptom might be cancer while scans and biopsies are being delayed. And we have to deal with interrupted treatments, phone visits, and virtual consults that cannot offer the reassurance of a physician’s hands palpating the body, and her smile when she completes her examination. Then there are the added problems of obtaining drugs, of travel restrictions, of clinical trials closing, of research shutdowns.
Still, when a notice circulated of a protest planned in solidarity with the huge marches against police brutality in major cities, I wanted to participate. The announcement mentioned that those immunocompromised could follow the marchers from the university to the courthouse in their cars. My stepdaughter offered to make signs that she could tape to the sides of my car.
But would there be adequate parking for all the people who wanted to attend in cars? How could I in good faith encourage my 92-year-old husband to accompany me into what would undoubtedly be a congested area? Would he be safe staying home alone or anxious about my safety? And what if I had to leave the security of my car? Courage failed me. Cancer was turning me into a coward.
When my healthy friend Judith came away from the rally exhilarated by the thousands who participated, the youthfulness of the organizers, and the thoughtfulness of participants who passed out bottles of water, I began to consider what those of us who cannot march can do.
Research shows that African-American patients suffer life-threatening disparities in oncology settings. Wealth and education gaps continue to reinforce a health gap. The percentage of blacks living below the federal poverty level is about double the percentage of whites. Just as the coronavirus has disproportionately devastated African-American communities, African-Americans have the highest death rate and the lowest survival rate of any racial group for most cancers.
Those who support the protest movement but cannot march can dedicate time and energy to various efforts helpful to cancer patients of color: organizations assisting black communities dealing with breast cancer; research studies analyzing the disproportionate black fatalities in prostate cancer; and local programs providing screenings in underserved districts, transportation and shelter for impoverished people in treatment, and navigators to guide underrepresented minorities through the maze of clinical trials.
Shocking as police atrocities are, they are among many inequities that need to be addressed and redressed.
Susan Gubar, who has been dealing with ovarian cancer since 2008, is distinguished emerita professor of English at Indiana University. Her latest book is “Late-Life Love.”
