This is not what this blog is about.
I didn’t even register it right away. Five years ago this Memorial Day I got my diagnosis of follicular lymphoma, a form of non-Hodgkin’s lymphoma. It was late on the Friday afternoon when the surgeon called with the biopsy results. He never said the word “cancer,” but recommended I see an oncologist. He was a very nice guy, and told me I was going to live to be an old man. Within 15 minutes I had read that follicular lymphoma is usually incurable. (The UpToDate database I used now puts it this way: “most cases of follicular lymphoma are not curable with currently available therapies.”) It was a long long weekend.
Usually follicular lymphoma – a blood cancer – is advanced before it’s first discovered. In the next few weeks, one oncologist told me the median survival was between 10 and 20 years. I was 40 with a wife and 4-year-old daughter. I asked her why she was an oncologist. She said she was interested in end-of-life issues. Also, the nicest people get cancer.
Eventually we determined that I had what apparently was a rare case of Stage I, which may be curable. I had 18 days of painless radiation and didn’t (physically) miss a day of work. Lucky is a funny word for this.
Five years later I don’t have an oncologist anymore. It’s the first line on my medical chart but not a to-do list item. When we moved away, my Bayesian-minded oncologist wrote in his farewell note, using his best handwriting: “Your chance for cure is reasonable: pre-test probability is low. Early detection is not helpful. If you get an enlarged lymph node, get biopsied.” Maybe that’s oncology speak for: “Relax, good luck!”
Anyway, there were lots of people I never told, including the chair of my department and some good friends and colleagues. Maybe that’s because it went from incurable (yikes, too much information) to possibly-cured (so stop complaining already) so quickly – before the start of the new semester – so I didn’t know how to bring it up or what to say.
For most people with this disease, the story is different. Thankfully, we’ve had a revolution in lymphoma treatment, and it’s usually a very long story. Most people live many years, and I’m told the new treatments usually aren’t that bad. (Easy for me to say.) Chance of surviving (that is, dying from something else) is pretty good. Experts debate whether the word “cure” should be used more.
Meanwhile, now there are two kinds of people in the world: people with a better prognosis, and people with a worse prognosis. Of course that’s always been true. But this experience sometimes makes me dwell on that, which increases my tendency to draw a sharp resentment/sympathy line according to this criterion. That isn’t healthy because it obscures the more important bases upon which to relentlessly judge people and compare myself to them.
I’m writing this because I remembered how lonely and scared I felt back then – when I didn’t even know where on the scale to put myself. Nothing aggravates the modern identity like incalculable risk. Fortunately, I had the greatest family and friend support – and medical care – anyone could ask for. Life got back to normal. We adopted another daughter. There are other risks to worry about.
But I’m thinking that somewhere someone with no idea what to do next is getting news like I did and Googling “follicular lymphoma.” If that’s someone you know, or it is you, maybe it will help to know about one more person who’s still living about as normal a life as I was before. Feel free to drop me a note.