Living with brain cancer has prepared me for coronavirus

The spread of covid-19 has been nerve-racking because it could place my complicated treatment in jeopardy. For the past 17 months, I have been undergoing experimental immunotherapy for a second recurrence. I receive these treatments every three weeks. If I get sick, at best, I will face a delay in treatment, which is stressful because it adds more unknowns to the uncertainty I already face about whether these treatments will halt the growth of my brain tumor.

But worse, I have no idea how the virus would affect my immune system if I am exposed and whether my immunotherapy may cause my immune system to overreact to infections. All these possibilities are frightening.

I am a 28-year-old recent graduate of the Joint Medical Program at the University of California at Berkeley. Just as the coronavirus outbreak began to spiral, I flew to Massachusetts on March 9 to visit my family while searching for jobs. My doctors and I have decided it would not be safe to fly back to the Bay Area, and for the time being I am self-isolating with my mom and stepfather. Fortunately, my insurance company has approved continuing my treatments at a hospital in Boston.

As I began to self-isolate, I realized I needed to keep in mind one of the most valuable lessons I have learned from my illness: ask for help.

This applied to not only basic needs but also loneliness. While going through my experimental treatments, I had to accept I could not do a lot of activities I was used to. The longer this continued, the more isolated I felt, and I sank into depression. It felt like a black hole I couldn’t climb out of.

When I realized I was not able to get myself out of this “black hole” on my own, I reached out to my closest family members and friends, and I was lucky to have access to a therapist and doctor. Talking openly about my feelings as well as starting medication helped me manage my depression.

I worry that going into a depressive state is a real danger for myself and others who must vigilantly self-isolate during this time. I also worry about those who have not had to experience this level of social separation before. Even though I cannot physically meet with the people who helped me in the past, I will use those resources virtually. I encourage everyone to do the same and reach out for help because there are always people wanting to support others at a time like this.

I am also working to protect my mental health in other creative ways.

When I was too sick from my treatments to join my friends at restaurants or events, I would watch movies, read books that had collected dust, played cards or simply sat outside when the weather was nice. Now, in addition, I’m using video chats like FaceTime to create a social element to what I do. We all need to reach out to each other as we navigate this new reality. Additionally, finding exercise routines, whether it’s simple walks or stretching, has been crucial for my mental health and will be critical to get through this pandemic.

I go for MRIs every nine weeks to see whether my tumor is growing. I’ve eventually been able to enjoy these nine-week chunks of time because I have learned I can’t control the outcome. There are some things I can manage such as sleep, nutrition and exercise. Now, I am stringently practicing basic hygiene, washing my hands for 20 seconds, not touching my face, following all the guidelines. I do what I can, but I know there is only so much I can do to prevent exposure to the coronavirus.

The hardest part of my journey with brain cancer has been uncertainty. How long do I have left? Will my tumor continue to grow? Is my treatment working? How sick will I get from my treatments? Will insurance cover my expenses and will I even be able to afford it?

I’ve dealt with this uncertainty since I was first diagnosed. There are so many “what-ifs” with cancer that it can become all-consuming. I see this happening with the coronavirus pandemic: How long will this last? Will I get sick? If I get sick, will it be severe? Am I passing on the virus to someone else? How long will I be stuck at home?

The uncertainties of this pandemic are all real concerns, but I’ve learned from living with cancer that there is no crystal ball. To constantly try to peer into the crystal ball to answer these unknowns is an exhausting and often futile task. It has taken me 16 years to learn that instead of focusing on the “what-ifs,” it is best to take life day by day.

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