I Don't Want to Know My Numbers

I recently got an email from another follicular lymphoma patient. That happens a lot. I’ve kept a blog about FL for over 11 years. Lots of other patients have found the blog and written me to ask questions or talk about their experience.

On the blog, I often write about recent articles from medical journals that describe the results of clinical trials for FL treatments. This writing involves lots of numbers, like the percentages of patients in the trial who have had success with a new treatment, versus an older, already established treatment.

The email I received brought up some trials I had written about. The email writer said “Like you, I’m a data fiend.” I guess if you look at those blog posts with all of those statistics and percentages, it looks like I am a “data fiend.” And I am, when it comes to research on treatments.

Me and my numbers

But I have a confession to make: I couldn’t tell you anything about my own personal numbers – my blood counts, my LDH levels, my liver enzymes. None of it. At my oncologist appointments, when my doctor tells me he has the results of my bloodwork, he usually says “Things look great,” or even “Rock solid!” That’s all I need to hear.

I keep getting asked by doctors if I want to sign up for access to my patient portal. And I keep politely saying “No, thank you.”

That surprises some people. I value science, and all the numbers that go with it. I’m not interested in treatments that haven’t gone through rigorous scientific testing. When a treatment has gone through a clinical trial, I want to see those numbers.

But my own numbers? You can keep them to yourself, thank you.

The problem with personal cancer stats and numbers

In my 11+ years as a cancer patient, the times I have gotten depressed have been because of numbers.

I remember the first time like it was yesterday. I had just been diagnosed with follicular lymphoma and been through all of the tests. My oncologist sent me to a specialist at the research hospital nearby, one of his old professors. He told me this specialist was a great doctor, but he was also very honest. As I walked down the hallway to my appointment, I saw a rack of pamphlets, including one for follicular lymphoma. I grabbed it and stuck it in my pocket.

As promised, the specialist was very honest. When I told him that I read that most people live with FL for a long time, he said, “Oh, this will definitely lower your life expectancy.” That put a dark cloud over me. When I got home, I read the pamphlet. It listed 5- and 10-year life expectancies. I couldn’t tell you what the numbers were, but they immediately threw me into a two week depression. What if I’m one of those people who doesn’t last 5 years?

Deal with it your own way

I know lots of cancer patients who can tell you all of their numbers, and how they’ve changed over time. They get a lot of comfort from that. And if that’s what works, more power to them

But for 11 years, I’ve avoided numbers about myself. If the doctor says they’re good, I’m happy. If he says they’re troubling, I don’t ask what they are; I ask what we’re going to do about them. Having a plan makes me feel better.  Focusing on my own numbers makes me worry, but focusing on numbers that support a promising treatment option gives me hope.