• Miriam Diaz-Gilbert

Review of Chasing My Cure: A Doctor’s Race to Turn Hope Into Action

A memoir of family, love, determination, resiliency, hope, and always questioning and following the data.


What is Castleman disease? Read Chasing My Cure: A Doctors Race to Turn Hope into Action and be astonished by David Fajgenbaum’s harrowing medical journey with this deadly disease.

That he lived to write about it, and become a leading authority and advocate for finding treatment and a cure for Castleman disease, is simply a miracle.


Chasing My Cure is an engrossing and compelling page-turning memoir. Fajgenbaum writes as a physician, scientist, and patient. While in medical school he becomes a patient with unexplainable symptoms, blood moles, and a fluid filled body. His organs begin to shut down.

Doctors are stumped. Could it be lymphoma? Is it an autoimmune disease?


While a medical student, he also delivers a baby. A compassionate medical student, he gives hope to George, an older patient who has terminal brain cancer and is suicidal.

Fajgenbaum’s account of how he connected to George and helped him to feel alive again is heart-warming.


George missed his daughter Ashley. This became apparent after Fajgenbaum gave him a writing exercise — just write one sentence. The sentences were always about how much he missed his daughter. With George’s permission Fajgenbaum calls Ashley to let her know her dad is doing better. The next day Ashley calls her dad. George is thrilled. Fajgenbaum also shares with George what it was like for him when his mother had brain cancer.


Of their connection to each other, Fajgenbaum writes,


This was the first time I may have really helped one of my patients. And it wasnt even a complicated procedure or coup of surgical dexterity. I hadn't uncovered medical mystery. I simply let my hope and desire for George to be happy during his final days direct my actions. George and I had gotten through a breakthrough by doing some paper work. That's all it was. The things that sustain us need not be anything more.


But there are times when more is required. Frustrated that there is no treatment and cure for Castleman disease, Fajgenbaum takes control of his medical care and reconstructs his own medical history beginning with his childhood records.


He scours and devours all and any research he can find on the Internet. He finds Frits Dr. van Rhee, an international expert on Castleman disease. Fajgenbaum crowdsources, collaborates, and builds community with researchers, scientists, and doctors throughout the world.


He even starts the MBA program at Wharton after graduating from medical school at UPenn.

Where does Fajgenbaum get his unrelenting strength and motivation while battling Castleman?


Chasing My Cure is also a story of the power of family — his father, sisters, and his future wife — to sustain him. His college and medical school friends also give him strength.


Fajgenbaum writes lovingly about his mother. She dies of brain cancer when he is 19 years old and a student-athlete at Georgetown where he’s the quarterback. His mother’s death and a cure for cancer motivate him to do his work even when faced with his own death at the hands of Castleman disease.


Fajgenbaum’s Catholic faith, prayer, and hope give him the fortitude to work toward finding a cure for himself and all sufferers of Castleman disease. He writes, Hope…is a choice and a force; hoping for something takes more than casting out a wish to the universe and waiting for it to occur. Hope should inspire action. And when it does inspire hope and action in medicine, that hope can become reality…


And then there is Santa Claus. Fajgenbaum had this reader at Santa Claus. He writes,

I basically believed in the Santa Claus theory of civilization: that for every problem in the world, there are surely people working diligently — in workshops near and far, with powers practical and magical — to solve it.


Through out his jaw-dropping medical crisis, Fajgenbaum is relentless, resolute, and resilient.

He writes, One of the greatest signs of a strong will is being able to find a silver lining while fighting in the midst of a storm.


Another theme in Chasing My Cure is optimism. In 2016, Gary, one of Fajgenbaum’s patients afflicted with Castleman disease has a relapse. The ICU nurse overhears Fajgenbaum tell his family that there is hope and that Gary will get through it. She pulls Fajgenbaum aside and warns him to temper his optimism because there is no way the patient will survive. Gary walks out of the hospital and has been relapse-free.


However, not all of Fagjenbaum’s patients survive Castleman disease. This is a heartrending reality, especially when the patients are children.


There are parts in Chasing My Cure that consist of medical and scientific terminology that might have your head spinning but it's not unexpected and necessary.


Chasing My Cure: A Doctors Race to Turn Hope into Action is a story of family and love in the midst of an unimaginable medical crisis affecting a loved one in his prime. Fajgenbaum endures five relapses and near death experiences during a 3 1/2 year period. He receives his last rites.


This memoir is a compelling and moving story about perseverance, determination, endurance, faith, hope, optimism, and overcoming adversity, and from the perspective of a patient who is also a doctor and a scientist.


©2020


Originally published in Medium.