Fajgenbaum - Chasing my cure

“Before I got Castleman disease, I was well on my way to an education and career that promised close to supreme authority. We live in a mostly secular, individualistic age, but can you tell me there’s nothing sacred about the symbols of medicine” (locator 3060 in Kindle version)? David Fajgenbaum’s statement late in the text of Chasing my cure: A doctor's race to turn hope into action: A memoir (2019) captured the core of the challenge he faced – trusting in medical experts but realizing that they had little knowledge and fewer treatments for the life-threatening ‘orphan’ disease that had invaded his body.

Castleman disease, and the particular type Fajgenbaum had, sets off a chain reaction in the immune system that attacks vital organs, resulting in multiple system organ failure (MSOF in medical shorthand), and leads to death for all but one out of eight who are diagnosed with it (locator 1038). Fajgenbaum had five such episodes, resulting in him saying good-bye to family and loved ones and given last rights during one episode. He went from a highly physically fit quarterback on the Georgetown University football team to life support for months of recovery. Through Fajgenbaum’s journey and dedication to finding a cure for himself and others, Castelman disease now has a diagnostic classification, is understood to be at the intersection of autoimmunity and lymphoma, and has medications that can slow and, in the best cases, reverse the disease. Fajgenbaum is now engaged in research and treatment of orphan diseases at the University of Pennsylvania Perelman School of Medicine and is an advocate for precision medicine (treatment based on “genetic makeup and specific disease characteristics,” locator 2954).

The advances in treatment of Castleman disease don’t stop there. Fajgenbaum’s research has demonstrated relevance to other diseases, most notably cancer. And this journey has surfaced questions and found solutions in medical research and practice, in particular the fact that coordination among researchers and among physicians is often very fragmented. And, information is not well coordinated across the research and practice threshold.

David Fajgenbaum isn’t just any author or physician but someone with whom I had a brief, yet important encounter. He was a participant in a LeaderShape Institute that I facilitated at the Allerton Retreat Center in 2006. David was passionate at that time about founding a group to support college students who were mourning the loss of a parent. This organization is thriving and is now called Actively Moving Forward and is designed to support the 1 in 3 college students who experience the death of a family member or close friend during their years of study. I met David after the death of his mother from brain cancer and before he was diagnosed with Castleman disease. Little did I know what David would face as he continued his studies and his own struggle against a catastrophic disease. David’s courage is humbling and the light he sheds on medical research and practice is instructive for all.

I hope not to forget a number of quotes from Fajgenbaum’s emerging conclusions related to his medical education and life experience:

“I need to live every day the way I’d want the people I love to remember me.” (locator 947)

“…living in overtime (referring to having survived near-death experiences) liberated me to be my best self.” (locator 1528)

“I stopped believing in an omniscient medical system.” (locator 3067)

“I rejected the belief that any institution had all the answers or represented all the available knowledge in the world.” (locator 3067)

“It feels like my soul has stretched its borders, and it has come into contact with others’ in a way I could never have anticipated.” (locator 3067)

“I got a larger life, one more connected to others, and a shared sense of responsibility.” (locator 3067)

“I’ve learned the difference between being hopeful and being invincible in hope.” (locator 3233)

“My greatest regrets on my deathbed were actions I didn’t take… make every second count, because the truth is: We’re all in overtime.” (locator 3395)

Chasing my cure is extraordinarily well written. It chronicles Fajgenbaum’s medical school years, provides detailed scientific evidence, offers some wonderful moments of humor, and folds in anecdotes with family, friends, and Caitlin (the woman who became the love of his life). Perhaps my own struggle in understanding my prostate cancer and my concerns over my treatment choices caused me to be more acutely interested in Fajgenbaum’s book; to say that I was riveted throughout the text is an understatement. This is a book that should be read by anyone diagnosed with a life-threatening disease as well as care-takers who are helping them cope with the difficult choices they face.