As a two-time cancer survivor and advocate, Joan brings her first-hand experience augmented by the experiences of others to provide the patient perspective to research studies and the PAC. Professionally she has worked in cancer patient support and serves as an advocate member on numerous funded research grants and scientific review committees.
Save the Date!
Twice I have heard the words, “You have cancer.” They brought fear, anxiety, shame and guilt. Cancer patients often question whether they brought the illness upon themselves. Did I eat the wrong food? Was I too stressed out? Did I not exercise enough?
When I received the call that I was positive for COVID-19 those same emotions came quick and fierce. How did I get it? Did I not use the hand gel religiously? Who have I exposed?
It started with a severe headache and chill I couldn’t get rid of. Upon first appearance of these symptoms, I wasn’t thinking COVID-19 as the cause; maybe just a migraine and the cold weather were the culprits. The next day fever, body aches, fatigue and joint pain were added to the list of symptoms. I was still questioning if this was COVID-19 as I went to the drive-through testing site. Most of us think COVID-19 will not happen to us. Then it does, and when that denial falls apart it is frightening.
By January 2021 we all heard the horror stories of what a monster COVID-19 could be. These personal accounts would incite fear in anyone. Would today be the day I start having trouble breathing? Would I have to go to the hospital, and would I make it out alive? Would I suffer from Long-COVID?
As it turns out, getting a COVID-19 test at a major research hospital is a golden ticket to cutting-edge treatment. The day after I tested positive, a research team called to tell me I was eligible for monoclonal antibody treatment and asked if I was interested. Even though it was still a treatment under FDA emergency use authorization, I jumped on it. It was a way to increase my odds of staying out of the hospital.
The next day, I drove alone to the hospital and waited outside for the nurse to come and get me. I was taken to a private room and soon the IV was in and I watched as those antibodies dripped into my vein. I was fearful of side-effects, but I was more afraid of COVID-19 taking me on a longer unpleasant ride. As I lay there, I was watching a live Zoom presentation on ‘COVID-19 and the Immune Response’ from the Precision Medicine World Conference. Ironic, I thought as I lay there getting immunotherapy for COVID-19. My second thought was just how lucky I was. I live in the right place and knew the right questions to ask and had the time and ability to get the therapy. I thought about the millions of COVID-19 patients who did not have the access I did, and how unfair it was that this therapy was out of reach for so many people. COVID-19 has laid bare the inadequacies of the US healthcare system, and how the populations affected the most from COVID-19 don’t have access to the care they need.
It came for my family
COVID-19 didn’t just affect me physically and mentally, but socially as well. I had an incredible amount of support when I was diagnosed with cancer. COVID-19 is a much different monster. You are isolated not just from friends and co-workers, but from family. There are no reassuring hugs four times a day. The fear of how bad it might get are thoughts that are hard to drive away when you are alone.
Turns out I wasn’t alone for long because the big scary monster had come for my family, just as it has for millions of others. My 2.5-year-old asymptomatic grandson tested positive a week after me. Three days later his dad, my son, tested positive. The feelings of guilt weighed heavily on me. Did I give this to them? We had decided when COVID-19 started we would keep our family bubble together and safe. We were all being so careful. How did this happen? My son and grandson moved in with me and my diabetic husband moved out. My daughter-in-law was now alone with her 3-month-old. For the next 3.5 weeks we all lived our separate COVID-19 lives. Finally, after almost a month at “Nonni’s COVID Camp” my son and grandson went home. I don’t think I have ever been more exhausted in my life. Chasing and playing with a 2.5-year-old while trying to recover from COVID-19 is not on the doctor-ordered recovery plan.
The Hunger Games
I have recovered, with some lingering taste issues, fatigue, and COVID-19 brain fog. Those emotions of fear, shame and guilt are still there but I am working on them. I have read that some side-effects get better after a vaccine. Because I had the monoclonal antibody treatment, it was recommended I wait for 90 days to get my vaccine. Now that the eligibility for vaccines has opened to younger age groups, I can’t find any available appointments. Living in a state with 39 million people and trying to get a vaccine is like the Hunger Games. But at least I am still around to play, and the monster didn’t win.