Off topic: My 5-year cancerversary

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!”

pretest-probability-is-low

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.

seesawline

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.

12 Comments

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12 responses to “Off topic: My 5-year cancerversary

  1. “Nothing aggravates the modern identity like incalculable risk.”
    Initially my eyes slipped over that and read aggregates instead of aggravates and m thoughts were “really because for some people that sort of things separates their identity!” So I re-read.
    What really interested me was that you said since your treatment and recovery you have adopted another daughter. My husband and I are in the process of adopting–no kids yet–and reading that sort of hit me–as it tends to these days. Yes there are other risks to worry about and continuing joys to embrace.
    Thanks

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  2. Congratulations! (*Knocking on wood*)

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  3. This is awesome, Philip. Thank you for sharing this.

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  4. Happy cancerversary! Many happy returns (of the day to celebrate).

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  5. You got a lucky roll of the dice, and good for you. My husband’s brother not so lucky. His first wife died of stomach cancer at age 38. His second wife died of Non Hodskins lymphona at age 42. He is now with his third wife.

    How often we take the gift of good health for granted. But once you have experienced, or have been close to someone who has not been so fortunate, you realize how precious good health is. I firmly believe that health care is a Civil Right. It should not be that only they well off have access. I hope Obamacare will help equalize the inherent inequity in our health care system. At least it is a step in the right directions.

    You had access to good quality healthcare and your wife and daughters are grateful for that, I am grateful for that. Have a happy life Phillip.

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  6. Congratulations on your 5th “cancerversary!!” I also have follicular lymphoma – stage 4 indolent in my skin and left kidney. Completed 6 rounds of Rituxan-Treanda(Bendamustine) in 2011-2012 and just completed my 9th maintenance round of Rituxan today. Have 3 more to go before I complete the maintenance phase. I was 42 when I received the initial diagnosis and was terrified, but I’ve learned in almost 2 years of living with this that life goes on and is often surprising “normal” and good, if not great most of the time. I feel good and am grateful for excellent healthcare, wonderful family and friends, and fabulous advances in cancer treatment. Wishing you the very best!!

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  7. Scott Rose

    Thank goodness that you are well. My father, who is 80, has been cured of three different cancers. Right now, he is working on a patent application for a new formulation of magnetic fluid which, when produced in large quantities, will revolutionize industrial seals.

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  8. I was diagnosed with a rare form of cancer (GIST) in 2007 that had a 50% survival rate; I was luckier than you, it was a misdiagnosis. I remain grateful to the docs at Dana Farber for their professionalism and kindness as we untangled the misdiagnosis a few weeks later. We accepted the referral for my son the day after we received the good news (we had put off making a decision, trying to assess my chances at surviving, but were pretty sure we’d have to turn it down). Every day with him, and his older sister, is a gift. Good health exists for far too few people in this world, helps me know why it’s worth fighting inequality.

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  9. Pingback: Certain death? Black-White death dispersions | Family Inequality

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