It started over beers while watching the first round games of the Final Four. My friend mentioned a neighbor's brother with lymphoma who had run out of options and wondered if I could reach out to my doctor at Penn for a consult. I quickly offered to help but also quickly rationalized to myself that he probably had a different type of lymphoma then mine. Something far more aggressive that he would have failed two chemo regimens at this point. This was another person's scary cancer story where treatments didn't work, situations become dire, timeframes left for living are handed out. This was not my cancer story.
Until it was. The next day I talked with my neighbor and learned that her brother's cancer story started out just like mine. Diagnosed in his early 40s with follicular lymphoma. He went through the same treatment I had. And it worked for five years. And then it didn't when his lymphoma transformed into a more aggressive form two years later. He'd gone through two rounds of chemo to get him into remission to do a stem cell transplant but those efforts failed. The miraculous new CAR-T therapy just approved by the FDA that delivered amazing results in its clinical trials is an option but it carries a $500-800,000 price tag and most insurers - including his - aren't covering it.
I was undone by his story. All weekend I imagined being in his shoes that look awfully similar to the pair I currently wear. How did you process knowing a life-saving treatment existed but was out of reach due to the price tag. How do you evaluating the remaining options that offer slim odds for success while taking a heavy toll in terms of damage to his body? I also wondered how he spent those first five years. Did he, like me in my second year of living with cancer, get to a place where it seemed lymphoma would be a big life-long nuisance but not a deadly threat. What did it feel like when it became clear that was not going to be true in his case.
I then started transposing his story over mine. What if, in three years, I transformed? Spent two years taking chemo that physically wiped me out and damaged my body only to learn it didn't work. What if at 48, I too was given six months to live? I quickly calculated the boys' ages at that point, ran through the milestones they will have reached and those that would still be beyond. I thought about what if I only had three more good years before things went bad. What would I regret that I hadn't done?
I marshaled all the limited resources I had to help to my neighbor's brother. My wonderful doctor happily agreed to see him as soon as possible. I searched resources for clinical trials where he might get CAR-T without having to pay for it. I checked in with knowledgeable folks further along in their diagnosis I've met in online forums.
So while this isn't my story, it feels like it and I am now heavily vested in it being a success story. I need to know that even if things should become dire, there is still hope. I need to know that this disease can be beaten by my neighbor's brother and therefore also by me.