12 Years

Today is my 12 year diagnosiversary. I was diagnosed with Follicular Lymphoma 12 years ago today.

That means today is also the 10 year anniversary of my first Rituxan treatment. I had 6 weekly rounds of Rituxan, and I haven't needed any treatment since then.

It's a good day.

Let me give you a sense of where my mind has been lately as I have prepared for this day.

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I'm always aware of my diagnosiversary coming up. Probably sometime in October, I start thinking "I need to stop saying I was diagnosed 11+ years ago and start saying I was diagnosed almost 12 years ago." That number is kind of always on my mind. It's probably because I tell my story so much, in so many places.

And probably sometime in December, I start to get reflective and think about what has happened in the last year, and where my mind is in terms of being a Follicular Lymphoma patient. Sometimes a song lyric will trigger some ideas, or an event, or even just thinking about the symbolism of the number of years I've been dealing with this.

But this year? Nothing.

I just couldn't think about anything that truly represented how I feel about having been diagnosed 12 years ago, and being 10 years out of treatment.

Some numbers do keep coming into my head. Like "10 years after treatment." There are some cancers that a patient is considered "cured" of if they have been out of treatment for 10 years. Not Follicular Lymphoma, obviously. There's always a chance that it's coming back, even after 10 years. At least, you're not going to find a group of lymphoma specialists who are willing to say that it's cured. And I tend to agree with them. So I couldn't really write about that -- too depressing. ("Hooray for 10 years! Still waiting for it to come back! Whoopee!")

And that "12 years after diagnosis." There's some hope there. I've read in a couple of places that Transformation is unheard of after 14 (or maybe 15) years. So I have that to look forward to. But that's not something to celebrate this year. Just a happy little smile that I'm a little closer to putting that worry out of my head.

It doesn't really make much sense to spend a celebratory day by discussing the things that I'm NOT -- not cured, and not curable, not transformed, but not really out the woods on that, either. It's that awful state of Living in Between.

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I know I can't really write a diagnosiversary post by reflecting on negative things. That just doesn't make any sense. I mean, every year after diagnosis is another year I'm alive. There's so much to celebrate there. I always remind my wife that we will be "celebrating my diagnosiversary," and she always asks that we use a word other than "celebrate." And I always remind her that we're not celebrating the day I was diagnosed -- we're celebrating the 4383 days since I was diagnosed. That's a lot of days.

I looked back at last year's diagnosiversary post, and, interestingly enough, I said the same thing -- I couldn't really think of a theme or a lesson or a brilliant thing to say.

Two years ago, for my 10th, I had a lot to say. That post was all about emotions, and all I had learned about the emotional life of a Follicular Lymphoma patient. One of those emotions was Fear. It's always there, for all of us. Sometimes it's a big roaring Lion who wakes you up in the middle of the night. Sometimes it's a tiny mosquito, buzzing in your ear, something you can barely hear. But it's always there.

So now I'm looking at two years of diagnosiversaries where I'm not sure what to write about, and a new Fear comes creeping in:

Complacency.

The idea that, since everything is going OK, then it will keep being OK forever.

In other words, maybe I'm not being afraid enough? Maybe after hitting that 10 year diagnosis mark a couple of years ago, and then another 10 year mark this year of not needing treatment, I'm feeling out of the woods? Everything is OK, and it will always be OK? I'm invincible now?

Probably not. That little mosquito of fear is still buzzing in my ear every now and then, but maybe I've stopped swatting at it so much. Maybe I've learned to just live with the buzzing.

I really don't want that to happen. I don't want to be complacent. I don't want to just expect that everything is going to be OK.

Which isn't to say I like the Fear, either. But, in an odd way, maybe the Fear is comforting?

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Last week, there was a small debate on one of the online Lymphoma groups I am a part of. One other group member insisted that CAR-T had cured his FL. A few other people very gently pointed out that, while CAR-T holds a lot of promise, it's probably a little early to say it has cured anyone. And given its track record, it's hard to say it is THE cure for FL. The original poster said that, basically, he is declaring it a cure, and if you disagree, that's fine, but FL patients need Hope, and the idea of a cure is the thing that will give people Hope.

I understand the impulse, but I have mixed feelings about it all.

As I said a few weeks ago, I'm not sure that, even knowing that there is a cure for some of us, I'd be able to fully believe that there is a cure for ME. I haven't even been NED (No Evidence of Disease), for crying out loud. It's always going to be in the back of my mind that it might come back.

But, at the same time, I'm fearing that I'm complacent.

More "living in between," I guess.

That's what it all comes down to, isn't it? That's the life of a Follicular Lymphoma patient.  Never really being able to say, for sure, that I'm one thing or another.

12 years of this stuff.

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And then, a few days ago, I wrote about an oncologist who has been going to the ASH conference for 30 years. He wrote about how the conference itself has changed (and hasn't changed) and how treatment for Lymphoma has changed.

I immediately went back in my mind about 11 and three-quarter years.

It's interesting to read the early days of this blog. Lots of stuff about doctor appointments, and then random thoughts to keep my mind busy. But one day, a couple of months after diagnosis, I wrote about "Non-Hodgkin's in the News." It was the first time I had written about research on NHL. It certainly wasn't the last. Almost 1450 posts, and writing about research on Follicular Lymphoma makes up a pretty big chunk of them.

That first post discussed the rise in survival rates for NHL patients over 10 years (1997 to 2007), with credit being given to Rituxan (approved in 1997).  It was the first time I had mentioned Rituxan in the blog. Two months after diagnosis, and I still had no real idea what treatments would be available when I needed them. But there it was, in the first sentence of the post, the model for so many other posts to follow: "A hopeful story in the news about Non-Hodgkin's Lymphoma."

News brings hope. That's what it's always been about for me.

And then the last sentence in that post: "Rituxin is likely to be a part of my future."

I certainly got that right.

That oncologist reflecting on 30 years of ASH attendance, and all that has changed in Lymphoma research (and all that has stayed the same) has me doing some of my own reflecting on all that has changed in 12 years.

It's ironic that, just as I was being diagnosed, experts were cheering over improvements in survival rates, thanks to Rituxan. Because now, 12 years later, we have a whole bunch of new treatments, many of them legitimate alternatives to chemotherapy, and survival rates have....stayed the same.

Don't get me wrong -- I'm happy that Rituxan improved things. The day I was diagnosed, Wikipedia told me that Overall Survival for FL was 8-10 years. These days, Wkipedia says 10-15 years, but lots of recent research puts it closer to 18-20 years. The problem is that OS is a measurement of a median -- the middle of a group being measured, and not enough people are dying to be able to reach a median in long-term studies. So 10-15 years is the most recent official number, but 18-20 is probably going to be official sometime in the near future.

But newer treatments aren't giving us much an an improvement in Overall Survival. Still nothing that works on enough people to be called a "cure." Lots of improvements in the time needed between treatments. But we haven't, by that measure, really progressed too far in 12 years.

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So where does that leave us?

Still "in between"?

Unfortunately, yes, still "in between." Lots of new treatments, but they aren't necessarily keeping us alive much longer than the ones we had in 2008.

When you're in between two things, you have a choice. You can turn one way or the other.

Looking back to a blog post from March 11, 2008, that started "A hopeful story in the news about Non-Hodgkin's Lymphoma," it's clear which way I always turn.

Toward hope.

There will always be something better out there. I will keep searching for it, and sharing it.

That's what I take away from 12 years of doing this. That's the lesson.

Turn towards hope.

Thanks for coming along for the ride. I'm looking forward to another year.