11 Years

Today is the 11th anniversary of my diagnosis with Follicular Lymphoma.

That means it is also the 9th anniversary of my Rituxan treatment.

If you want to know how I spent my day, it was pretty much the way I had planned it. There were a few small differences -- went the gym instead of a walk outside, and two of my kids came to the movie with us -- but it mostly went the way I had planned it.

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I get reflective on this day, as you can imagine. It comes at a good time of the year for reflection. The business of the holidays is over, but a new year has really just begun.

To be honest, I've had a hard time writing my Diagnosiversary piece this year. I usually start reflecting a few weeks before, and a kind of theme comes into my head. I've been trying for a few weeks, thinking about the events of the last year, and I'm feeling a little stuck.

One word keeps coming back to me: Liminality.

It's a good word -- one of those words that you find on a "Learn a Cool New Word Every Day" desk calendar.

It means being in a kind of in-between state. Still part of one thing, but knowing that some other thing is well on its way.

That's where I am now. Feeling like one part of my life is ending, and another is beginning, but I don't quite know what to expect.

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2018 was an eventful year. My father was diagnosed over the summer with lung cancer. He died in October. My mom died almost 5 years ago, from ovarian cancer. So it's been a strange few months, not being able to call them to share a story, or ask for advice, or just chat. I've spent some time at their house, going through some things, collecting some memories.


Going through so much stuff also inspired me to start cleaning out my own attic, so I've been going through even more memories -- finding some of my own stuff from high school and college, and finding a lot of my own kids' stuff, too. There's been a lot of looking backward in the last couple of months.

And then there is the looking ahead. My oldest child will graduate of college at the end of the year. This afternoon, he came back from being abroad for three weeks. My youngest will start college in the fall. My middle child is halfway through his second year of college, six hours away from us. We're going to be "Empty Nesters" soon.

Looking back and looking ahead.

Still part of one thing, but knowing that another thing is coming.

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And then there's the whole Follicular Lymphoma thing.

11 years. That's a new thing, too. When I was diagnosed, the median survival rate for FL was 8 to 10 years. I'm on the "good" side of the median now. But I'm still not sure what comes next. I know that there are lots of FL patients who can go years -- even decades -- without needing treatment. But I also know plenty of FL patients who have needed to be treated more than once, or whose disease got more aggressive, or who transformed. I have always assumed that, at some point, I would need treatment again. How could I not expect that?

Still part of one thing, but knowing that another thing is coming.

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I'm re-reading what I just wrote, and it all sounds kind of negative. I don't mean it to be. 11 years is absolutely something to celebrate, and that's just what I did today.

But then there's that nagging Liminality.

Of course, it's not like it's a new feeling for me. I've been in that "halfway, not knowing" state for 11 years, after all. Two years of watching and waiting. Then treatment (and even then, not knowing for sure if it was working or not). And then 9 years of pushing the worst out of my head and trying my best to live my life. It's a state of mind that I am mostly comfortable with.


I've never been a "Sunshine on My Face" cancer patient. Those are people who get a diagnosis and use it to appreciate life more. Strawberries taste better. The sunshine on your face feels warmer. Every day is a gift.

It's not it's bad to be that way. But it's not me. I'm more of a "Snowplow" cancer patient. Snow is great, for the first few inches. And when it piles on, there's no point in getting upset about it. You put on your gloves and boots, put your head down, and plow through it. There's too much to do to marvel at it, or be pissed off about it.

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I guess that's how I deal with the Liminality, the Uncertainty, the In-between-ness. Not to ignore it, or delight in it. Not to wish for the past. It's to live day by day. If you've been reading for a while, you know I'm an optimist, and Hope is my general position in life.

Living day by day is essentially hopeful. You're assuming that another day is coming tomorrow.

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I'm looking forward to a new year -- my 12th as a Follicular Lymphoma patient, and my 10th since my Rituxan treatment. I don't expect to resolve anything. I'll face some new challenges, personal and professional and medical. I'll try to put my head down and plow through. I'll learn what I can. I'll keep writing.

Thank you all for another year. I love hearing from you in the comments, and in email and Twitter. It's fuel for my plow.

Good health to all of you.
Bob