Brain Cancer Prepared Me for the Isolation and Uncertainty of the COVID-19 Pandemic
Living in the present is how I survive.
The symptoms of low-grade oligodendroglioma first appeared in the summer of 2003, when I was 12, but they were vague enough—mild headaches and occasional weird sensations on my right side—to ignore. In the fall, I tripped and fell during a game of rollerblade hockey with my classmates and started convulsing. I don’t remember much of my life before my cancer diagnosis, but all these years later, the memory of that day is seared in my mind, and I can recall the events as if they happened yesterday.
A CT and MRI scan of my head showed a tumor nestled in the left motor cortex of my brain. Although I didn’t understand what that meant, I remember watching cartoons on the television in the hospital emergency room while my parents talked with the doctor. Seeing the look of fear on their faces, I knew that whatever this was, it wasn’t good.
As my seizures became more frequent, my parents and I had a meeting with a surgeon to discuss my treatment options. He asked me to wait outside while he talked with my parents, but as I paced up and down the hallway, I became anxious and angry at being left out of the discussion. I knocked on the door and told my parents and the surgeon that I had to be included in the conversation. I have taken control of my treatment decisions and my life ever since.
Getting a Second Chance at Life
The surgeon performed a tumor resection, removing most of the malignancy from my brain. The surgery left me paralyzed on my right side, but I was able to regain much of the movement in my leg and arm with physical therapy, which I continued until I started college. While I was recuperating in the hospital, I refused to see any of my friends because I was embarrassed, but it is a decision I regret, because it left me isolated and feeling lonely—two emotions that have dogged me throughout my cancer survivorship.
Eventually, I regained some of my confidence and identity. I came to realize I had been given a second chance at life and could use my experience to help others.
Searching for Effective Treatments
As the years went by with no recurrence, I began to relax. After college, I received a fellowship from the Henry Luce Foundation; it provided funding and language training to live and work in cities and small villages in Asia in various fields, including public health and environmental science—two career choices I was interested in pursuing. I was stationed in Bali in 2014 when the seizures began again.
When I returned to the United States to celebrate the Thanksgiving holiday with my family, I met with my oncologist, who ordered an imaging scan of my brain; it showed the tumor had grown and was inoperable. He recommended a combination regimen of proton-beam radiotherapy and temozolomide chemotherapy to slow tumor progression and to buy time until a more effective therapy could be found.
Despite this setback, I decided to go ahead with my life’s goals and applied to medical school to work at the intersection of human and environmental health care. I wanted to work one-on-one with patients the way my physicians had worked with me. I had hoped the treatments of oligodendroglioma would give me the time I needed to complete medical school. However, by 2018, the tumor was progressing and had spread into the resection cavity, which made it possible to surgically remove part of the mass, but that also signaled greater urgency to find other treatments to stop disease progression.
“Eventually, I regained some of my confidence and identity. I came to realize I had been given a second chance at life and could use my experience to help others.”— Jeremy Pivor
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Living With Cancer in the Era of COVID-19
A biopsy of the new tumor showed the cancer had transformed into a more aggressive grade III anaplastic oligodendroglioma. Genomic testing of the tumor found it had the IDH2 gene mutation, and I was prescribed the IDH2 inhibitor enasidenib, which failed to halt disease progression. Since I’m not eligible for any clinical trials, my oncologist suggested localized radiation therapy to spark an antitumor response to kill distant cancer cells, what’s known as the abscopal effect, in combination with the programmed cell death protein 1 inhibitor pembrolizumab. The therapy is completely experimental, but it is currently all I have to stabilize the cancer; so far, it appears to be working. At least, that’s what my latest MRI shows.
However, my health is tenuous and made even more so by the COVID-19 pandemic. I’m worried the cancer has made me more vulnerable to the coronavirus, and if I were to contract the virus, I would have to stop taking pembrolizumab, which would make my health status even more precarious.
Balancing Quality and Quantity of Life
Recently, I did have to delay one treatment of the immunotherapy because I was experiencing a mild fever, headaches, fatigue, and muscle aches—hallmarks of the coronavirus. Fortunately, I tested negative for COVID-19 and am able to continue in-clinic treatments. The rest of the time, I am in self-quarantine at home. The isolation and social distancing are familiar to me. Over the past 16 years, I’ve learned how to mentally cope with life’s uncertainty and to move forward despite that uncertainty. Living in the present is how I survive.
This latest cancer recurrence has given me a tangible sense of mortality and clarity on my two most important values: strengthening my relationships with my family and partner and using my privilege to help others through writing and advocacy.
Long ago, I had to make a decision about what was acceptable to me in terms of quality of life from my cancer treatment. I decided I was willing to suffer any physical deficits as long as I could keep my mind intact. All my treatment decisions reflect that delicate balancing act between quality and quantity of life.
I don’t know how much time I have left to live. Still, I’m optimistic about my future, because I know I will live my life my way, and I’m content.
Mr. Pivor lives in Framingham, Massachusetts.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.