This weekend, I was going to go to San Diego to see my best friends from medical school for the first time in 2-3 years and then to SF for 4 talks that I was really excited about! I was going to evangelize about repurposing drugs for new uses to save lives (I’m literally alive right now because of a drug that I repurposed to save my life).
Given the current concerns with COVID19, I decided to cancel my trip. I’ve been following the news and scientific literature, bracing for impact, and heeding warnings, but a few things hit me over the weekend as I was dealing with some mild FOMO.
First, COVID19 causes death by igniting a ‘cytokine storm’ that requires ICU care. The COVID19 ‘cytokine storm’ is very similar to a deadly Castleman disease ‘cytokine storm’, both driven by IL-6. In fact, tocilizumab, which was originally developed for Castleman disease in the 1990s, is being used to treat serious COVID19 cases. As someone who has had five of these ‘cytokine storms,’ I can attest to how frightening they can be.
Second, individuals with comorbidities and the elderly (and likely the immunosuppressed) are at increased risk of death. So the immunosuppressant that I identified to treat and prevent a ‘cytokine storm’ relapse for me that is saving my life may be putting me at increased risk of death (or possibly lowering my risk…) if infected with COVID19. We don’t have nearly enough data to suggest that discontinuing therapy (or adding therapy) is warranted, but we’ll be following this closely.
Third, we are all completely terrified for ourselves and our loved ones of getting struck suddenly with COVID19. Over years of being in and out of the ICU, I struggled A LOT–but eventually figured out–how to live with the fear of death and the fear that I could relapse at any moment. If you’ve read Chasing My Cure, you’d know that I count my time in remission down to the decimal place (today has been 74.13 months since my last relapse) because I know that I can’t round up. I may be in the ICU tomorrow. I hope and pray that is not the case, but I don’t stop at hoping. I’ve learned to harness my fear and hopes toward taking concrete action. Having an #overtime mindset (focusing on what we can control) and turning my hopes and fears into concrete action helped me to identify a treatment that is helping me to survive and live without fear. I don’t know how or why I survived to this point, but I sure hope these lessons about facing death and overcoming fear in Chasing My Cure can help during this scary time.
UPDATE: Check out the below video about how I decided to join the fight against COVID19: https://youtu.be/0HFHfTd9-Y8
Thank you Dr. Fajgenbaum for all you have done to find a cure. You were the one that diagnosed my grandson, Zachary Miller and we are so thankful. I have your book and am passing it on to a very dear friend of mine. I donate monthly to help find a cure. It is not much, but know every little bit helps
Thank you so much, Helen! I’ll keep fighting with everything that I have for patients like Zachary. I’m so glad you have my book and are sharing it with others who may be inspired by it. Thank you for donating to our work and turning your hope for a cure into action.
I kearned mych about Castleman’s by reading your book. Keep fighting for a cure.
I kearned much about Castleman’s by reading your book. Keep fighting for a cure.
Thanks so much! I hope you enjoyed it! I wish that the fights against CD and COVID19 weren’t so difficult, but I’m thankful to have an amazing team and amazing supporters who make our work possible.