Friday, January 15, 2016

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:


18 comments:

Anonymous said...

Congratulations Bob! Your blog has been a great source of information over the past 2.5 years since my diagnosis. Things looked very bleak back then and what I read online was very scary, but luckily I found your blog, which really helps iron out the data and put everything in perspective. I've recently finished 2 years of Rituxan after 6 rounds of RCHOP and am finally feeling like the old me. I too will always remember that day when I heard the word Cancer,as well as the day I was told that I was officially in remission. These dates will never come and go unnoticed. I know that indolent lymphomas tend to resurface at some point ( I've read more studies in the past 2 years than I wish I had) , but I will be damned if I make it define me. You are a great example to me. Enjoy your special day, you deserve it!
Lilly

Mark Sutter said...

Thanks for sharing Bob. Sounds like you have a wonderful day in store for you.

Your blog is indeed a great source of information and inspiration to those of us with similar diagnosis.

Thanks once again for all the good you do through your communications. Enjoy the weekend!

Mark
Ohio

Joe Buck said...

Happy cancerversary, Bob, and hope you get to celebrate many more.

Joe Buck said...

Happy cancerversary, Bob, and hope you get to celebrate many more.

Fali said...

Congratulations Bob you have always been a source of inspiration to me. My husband also reminded me on jan7 that it was my two yr anniversary of diagnosis , funny he was the one who had to remind me while I did nor remember. Hope we get to celebrate many more.Thanks for your blog.

William May said...

Congratulations on your 8th cancerversary. Give the rest of us hope by going for your 30th!

Anonymous said...

Happy anniversary, Bob!! May you have many, many more years of good health. My wife was diagnosed a little over a year ago. I, too, remember reading those numbers in the early days. It took us months to come out of that early shock and depression. We are now doing well and have hope for many years together. Your blog has played a big part in making us feel good again.

I am so happy that you and your family are doing well. I'm looking forward to many more years of reading this blog. Thanks!!

Kevin
New Mexico

Anonymous said...

Congrats on the 8 years! Just had my 5! Love the white cell cupcakes--having my two and half year survival celebration in May thinking I may try to make some. Love your blog--keep the info coming.

Kelly

Rodrigo Carvalho said...

Congratulations Bob!
Stay away from wikipedia, new patiences with fNHL!

Virginia Miller said...

Like the others, I wish you the best, Bob! Your wise and humorous postings keep me grounded and hopeful. I'm going to show my baker granddaughter the cupcakes and see if she will make them for my diagnosis anniversary in June. Best wishes for the upcoming year!!

Anonymous said...

Congrats Bob
Greetings from Finland. Just before the Xmas I was celebrating my 4th anniversary on CR. The treatment procedure seems to be more and less the same in everywhere.
All the best to all.

Anonymous said...

5 years for me, just watchin and waitin... Thanks for keep up the blog, it gives me hope.

Michael Buller said...

Congrats Bob! I haven't been here for a while as I kind of fell out of regular blogging for a bit. Always good to read you and I share your sentiment on the whoe numbers things! Keep on writing. --michael

Lymphomaniac said...

Thanks, everyone. You make me happy to be here.
Bob

Anonymous said...

Here's to pushing to 100 years old and beyond, best wishes! - Jeanne

Anonymous said...

You made my day - thank you :)

Anonymous said...

Congratulations Bob! (From: first time commenter; long time reader):)

Barbara Patch said...

So very happy for you. Woo hoo!