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Why I Don't Care About What Caused My Cancer

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In January 2008, I was diagnosed with follicular lymphoma, an indolent (slow-growing) but incurable blood cancer. Soon after I was diagnosed, I began a blog, mostly as a way to update family and friends about what was happening to me.

In the nearly 10 years since I was diagnosed, the blog has evolved into a place to inform other follicular lymphoma patients about current research in treatments and other related issues. I learned early on that I have a knack for explaining difficult science into simple terms, and my blog readers use that information to have informed conversations with their doctors.

And so, for someone who isn’t an oncologist, hematologist or biology researcher, I think I know quite a bit about follicular lymphoma.

But one thing I don’t know, and don’t care about, is what caused my cancer.

Oh, I know what causes my cancer in general. It’s an (14;18) translocation. Two of my chromosomes switched places, and when that happened, it made my body create too much of an enzyme that is supposed to talk to a protein that is supposed to tell some white blood cells they’ve done their job and it’s time to die.

But that doesn’t happen, and I have a bunch of white blood cells that won’t die. I know all of that.

However, I don’t know, and don’t care about, what caused my cancer.

There are no definitive answers about what causes follicular lymphoma. Some studies say it might be caused by an infection. Others say it might be from pesticides or other chemicals. Maybe from certain viruses. Or, like as many as two-thirds of cancers, it might just be from a spontaneous genetic mutation.

Lots of cancer patients want to know how something like a cancer diagnosis could happen to them, and that means asking what caused it. And asking that question makes a lot of sense.

I remember a friend telling me her brother had, like me, been diagnosed with follicular lymphoma, and she asked me what caused it. I avoided answering, but when she kept pressing me, I finally relented. She got hooked on to the idea of an infection.

“We live near a river. He loves to kayak. Could it have been something in the water that gave him an infection?” I told her it probably wasn’t and tried to change the subject.

And here’s why.

Like other chronic conditions, follicular lymphoma has its own complex set of emotions that comes along with it. Fear, for sure – anyone who hears the word “cancer” will immediately feel fear. Anger and helplessness. Uncertainty. Worry. As an indolent, slow-growing disease, follicular lymphoma can sometimes stick around for months or years before it needs to be treated. That’s a long time to know you have cancer without doing anything about it. And a long time for negative emotions to fester.

Fear, anger, uncertainty, worry. I don’t need to add any more emotions to the list. Like guilt or regret.

And if I start asking questions about what caused my cancer, that’s what I’m going to end up with.

Here’s what I mean: suppose my friend’s brother did learn it was an infection that caused his cancer. Would that mean he would look back at 50 years of swimming and kayaking in a local river and regret having done it? Would he regret the times he had spent with his kids, teaching them to swim, showing them how to fish from a kayak without tipping? Would he regret his early morning trips on the river, watching the sun rise? Would he regret all of that exercise, the strong shoulders and forearms he had developed from paddling? Would a lifetime of joy be wiped out by guilt?

So, do I want to know what caused my cancer?

No, thank you.

Instead, I’ll look back at the good times, and look forward to more, and not worry too much about things I can’t change and can’t control.

As a cancer patient, I’ve lived with a lot of uncertainty for close to 10 years. I can live with this uncertainty, too.

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Thinkstock photo by splendens

Originally published: July 19, 2017
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