> David C. Fajgenbaum (born March 29, 1985) is an American immunology researcher and author who is currently an assistant professor at the Perelman School of Medicine of the University of Pennsylvania.[1] He is best known for his research into Castleman disease.
He spent years studying the disease as a researcher. He's an exception, really.
A close friend is considered one of the best neurosurgeons at one of the best hospitals in the country. Brain tumors are his specialty. I remember him once saying he was growing exhausted about his job and thinking of retirement, even when he’s still young. The reason being, most of the other doctors in his team were not very competent and he had to constantly review and correct their work. He’s not an arrogant guy but all the contrary, very down to earth. For him to say something like that is because the mistakes he sees have to be bad. Every time he tried to quit, the hospital threw so much money at him that he could not refuse it.
And sometimes that advocacy is harmful, desperate, arrogant flailing—against the reality one knows is true with overwhelming likelihood—manifesting as "advocacy" or "will" that destroys so many chances for fully experiencing the reality of the precious, remaining, time one has (or one has with one's partner).
NOTE: This is not me disagreeing at all, just your point moved me to make the obvious counterpoint, having been through all this myself very literally and very recently. I know firsthand how important the advocacy is, but also how often it causes nothing but harm. There is a real tricky balance between agency vs acceptance when you've truly lost control of things, like in these cases.
Sure, and we probably all agree that these are personal decisions. If the OP wants to dedicate his life to working on this particular problem, great. Maybe he makes a meaningful contribution. Maybe he just helps his partner make better informed medical decisions. Even if you plan to follow standard of care, doctors often present choices that balance risk vs result.
Also, doctors split their time among patients and their various diseases. You, on the other hand, can focus your study on your disease. If you have a scientific mind, you can become an expert with enough study.
Just keep trying, especially when others have given up
https://www.cnn.com/2025/09/08/us/video/treatment-cure-disea...