You can never make sense of cancer

When you tell people that your dad died of lung cancer, often the the follow up question is, “Did he smoke?”

In my case, the answer is, sort of.

I have fuzzy memories of my dad in our basement, smoking his pipe in his black leather chair and watching the original Doctor Who (I’m still processing the cultural implications of that last detail).  Rumor has it he smoked cigars in the ’60s, but if Mad Men has taught us anything, that was pretty common.  I don’t think he ever had a cigarette in his life but I can’t confirm or refute because it feels awkward to ask anyone who would know at this point.

He was also exposed to an unknowable variety of malevolent compounds working in a printing company (the kind with movable metal type and etching, not the ink-jet kind) and reportedly was Agent Orange-adjacent for a summer while clearing Iowa countryside for the State Highway service as a teenager.

All of this is focusing on the wrong thing.

One of my favorite patients has been coming to see me for about 6 months since he was diagnosed with widely metastatic cancer, and during our first visit we talked about the extent of his disease and the treatment options.  After that, he had a brief emotional moment when he asked the question that is on the mind of every person who receives news of a terminal disease.

“What did I do to deserve this?”

Which is a very different question than, what were the events of my life that might have increased my risk of getting this?

What did you do to deserve this?

Nothing.  I don’t care who you are or what you did.

When people ask whether my dad smoked, they’re really asking, “Am *I* doing everything I possibly can to ensure nothing bad is going to happen to me or anyone I love in the near or distant future?”

You might be trying, but you’ll fail.

A few months ago I was in the hematology-pathology lab looking at bone marrow biopsies with one of our heme pathologists.  It’s microscope work and kind of meditative (this may be subjective) and we had been through about ten slides when a bad one came up.

Large, active-looking white blood cells, way too many to be normal.  Acute leukemia.

The boy’s date of birth was 2008.

In lower-risk childhood leukemias, the chances of surviving four years is about 95%.

Even very high-risk types have about 80% chance.  If we had treatments with these success rates in adults we would be calling our moms to tell them how proud of us they should be.

I have two kids, and from a parent’s perspective, these numbers are exactly 5 and 20% too low.  Since having children I have found my sense of well being at times threatened by the existence of moving cars, tree nuts, sharp metal in any form, UV-B radiation, anyone who had a bad morning, and BPA-containing plastic.  I have no point of reference for the sense of cosmic injustice that could possibly accompany a diagnosis like leukemia, other than to say I am sure it’s an amplitude and character of emotion that I’ve never needed to, and hope never to, endure.

But were I in that situation, it’s possible I would ask, “What did I do to deserve this?”  Then I might ask, “What does this mean?”

I think these are the questions on which we should be focusing, but not because it’s necessary to answer them.  It might be necessary to acknowledge that they have no answers.

When my dad died, I so intensely wanted to understand it.  I repeatedly attempted and failed to construct a narrative that made sense, this loss of a central role model when perhaps he would be most needed as time pulled me into adulthood.  I wanted to make it a Hemingway story, stripped of anything superfluous and brutal but romantic in the way the characters were battered by their circumstances but were still sufficiently self-contained to walk themselves home at the end of the book.

I continue to fail at this, and forgive the speculation but it can’t be easier when a child is at the center.  There’s no context in which it makes sense, there’s no greater plan whose outcome makes it forgivable (and generally I’m a believer in greater plans), and we torture ourselves because we’re so convinced that it should mean something.

Maybe it doesn’t mean anything, in the way we think it should.

Maybe it only means something when we make it mean something, when we force it to mean something good.  When we take the moments that we have with the people we love, the people who are still around us, our children, our families, and recognize that even if everyone is wonderfully healthy, it’s also true that those people will never be the same people as they are in the moment that’s right here.  In the next moment, and the moment after that, things will happen that will make them different people, and you’ll also be different because things will happen to you and you’ll add those things to the nearly infinite number of things that have happened to you already, all of which make up your understanding of how the world is.

Apologies to Jon Kabat-Zinn, but the present is all we have.  Asking whether we should have done something differently to prevent something that’s happening right now is only useful to other people. It’s useless to us.  We can’t even really depend on resolutions made now to matter in the future, because nothing happens in straight lines.  There’s always a zag.

Sometimes the slide shows leukemia, and you don’t deserve it, and you can’t change it.

You might be able to make it mean something.

Kenneth D. Bishop is a hematology-oncology fellow who blogs at Out Living.

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