13 (Lucky) Years with Blood Cancer
January 15 is my diagnosiversary. It’s been 13 years since I was diagnosed with follicular lymphoma, and 11 years since my first treatment with a monoclonal antibody.
The day will be different than it usually is.
In the past, on this day, my wife and I usually called in “sick” to work. We’d sleep a little later, then go for a walk. We’d go to an afternoon movie. But first, we’d buy sandwiches, and we’d sneak them into the theater, breaking the “no outside food” rule. It’s my day. I make the rules on my diagnosiversary.
Sometimes my daughter would make me a cake. (Once she made cupcakes that looked like white blood cells. She inherited my odd sense of humor.)
This year will be quieter. No movie. We’ll probably get sandwiches, but we’ll walk to the deli down the street. The sweet couple that owns it will bring our sandwiches outside to us, and we’ll walk home with them. We’ll settle for an online streamed movie. I’ll still demand a special dessert from my daughter, though.
Luck of the draw
This being my 13th diagnosiversary, I’ve been thinking a lot lately about luck. That’s been even more true since I read Ronni Gordon’s excellent piece about luck. Thirteen is, of course, an “unlucky” number. I can’t say it’s been an especially lucky year for any of us.
And I think about the role that luck played in my own life as a cancer patient.
A study from a few years ago showed that about two-thirds of cancer were not caused by environmental factors, or lifestyle choices. Instead, they were caused by spontaneous genetic mutations. For whatever reason, two genes switched places, and that set off a bunch of other proteins and enzymes and other genes that told some cells that it’s OK for them to keep growing. The switch was spontaneous, not caused by anything the patient did. In other words: bad luck.1
I have follicular lymphoma. Researchers have identified some possible causes for the disease. Possible. Not definite.
When I was first diagnosed, I looked at some of those causes, and thought back on my 40 years, and tried to figure out what I did or didn’t do that might have caused me to get the disease.
But then I stopped figuring. It’s not the kind of cancer that will have a different treatment based on having a different cause. In the end, I really didn’t want or need to know.
What I would lose
Why don’t I want to know? When I was young, my father and I would go smelt fishing in the late autumn. Smelts are small (but delicious) and caught using a bamboo pole. What if I’d learned that my blood cancer came from holding bamboo for hours on cold November mornings? Knowing that wouldn’t change my diagnosis. It wouldn’t change my treatment.
All that would change would be the beautiful memories I have of spending time with my father. I don’t want that.
(And, just to be absolutely clear, that was a made-up example. I’m not really suggesting bamboo causes cancer.)
After 13 years, it’s easier for me to accept the role that luck has played in my life. And one big lesson I have learned is, there are some things that aren’t worth looking back on. There’s so much to look forward to, and so much to be hopeful about.
Like my daughter making me dessert.
Do you experience brain fog?