8 Years

Today is my 8th diagnosiversary.

Eight years ago today, I was diagnosed with Follicular Lymphoma.

Six years ago today, I had my first Rituxan treatment (and then five more rounds after that, and I haven't needed any since then).

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Eight years isn't a good round number like 10, and I look forward to that 10th diagnosiversary. But 8 is pretty significant anyway.

I can remember all of the uncertainty I felt when I was first diagnosed. I knew nothing about Follicular Lymphoma. Not like now, when I know way more than I wish I had to know.

I remember the ups and downs of those first few months -- learning something that gave me hope, and then hearing something that made all hope fly away. It took a while for that to even out.

I remember the thing that happened that makes 8 years significant. I was having a good day, and someone I love sent an email to my wife, worried. The loved one had looked up Follicular Lymphoma online, and had read on the Wikipedia page that the median survival for Follicular Lymphoma was 8-10 years. I was 40 years old at the time, with three young kids. My loved one had reason to be worried, thinking I'd be gone in 8 years. And, in my fragile emotional state, that got me worried, too. I can still remember the dull pain in my gut.

I know better now. I have no idea what the future brings, of course. But I do know how to read a statement like "median survival is 8-10 years." I know that statistic has nothing to do with me, personally, and that I can (and plan to) live for a very long time.

I also know that 8-10 year survival was probably a very low number, even for 2008. Over the last 8 years, I've seen studies that have bumped that number up, little by little. I remember seeing one, early on, that said that figure was based on pre-Rituxan era statistics, and that it was more likely 12-15 years. And then I saw a study that said younger patients like me were more likely to survive 18-21 years. And then, more recently, I've seen numbers that suggest it might be pushing 30.

I've learned to just sit back let the great Follicular Lymphoma researchers keep doing their work. If I just let it go, they'll have me living to be 100 before all is said and done.

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But I also know how dangerous it is, still, to read things online. Just for fun, I looked back again at the Wikipedia page for Follicular Lymphoma, and under "Prognosis," it still says, "Median survival is around 10 years, but the range is wide, from less than one year, to more than 20 years. Some patients may never need treatment. The overall survival rate at 5 years is 72-77%."

That's a little better than what it said 8 years ago, but only a little -- especially if you click on the little footnote number at the end of that sentence, that takes you to the source for that statistic. It actually takes you to a Medscape page from last March. Nice -- Medscape is a respected source. But even that respected source says, "Despite the fact that most follicular lymphomas are advanced at the time of diagnosis, the median survival of patients with follicular lymphomas is approximately 8-10 years, and many patients may not require treatment for prolonged periods of time."

Wait -- what? We're back to 8-10 years? Look at the source for that statistic, and it's from an article published in....2007.

Ugh.

That was even before I was diagnosed.

In terms of cancer research, that's like a thousand years.

It's no wonder people get scared. There's still so much misinformation out there, even in places that one would hope would be more reliable.

The blog has always been good for me. It forces me to keep up on what's going on in the world of Follicular Lymphoma. I don't want to rely on information that might be out of date or unreliable. And if the blog helps other people, too -- all the better.


I'm a lot less scared than I used to be. Time and knowledge help a lot.

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So today I celebrate.

I don't celebrate being told that I have cancer. I celebrate the 2,920 days I've been alive since then.

In the years right after I was diagnosed, I would celebrate by skipping work, bringing the kids to school, and then going back to bed with my wife. Then we'd see an early movie and violate the "no outside food" policy and sneak sandwiches in with us.

Nothing quite so exciting planned for today. My wife and I went to the gym this morning, and we'll go out to dinner tonight. And then we'll come home for dessert, because my daughter, the award-winning baker and cake decorator, is making cupcakes that look like White Blood Cells.

(It's nice to know I have passed along my sense of humor to my kids, even if my wife thinks White Blood Cell cupcakes are "weird as hell." I'll post a picture after my daughter has decorated them.)

Edit: Here are the White Blood Cell cupcakes! Look for WBCs on Google Images -- these are very realistic. I love my cancer nerd children.

 




Thanks for reading, everybody.

And while I have seen plenty of doctors in the last 8 years, I'll let my favorite Doctor have the last word: