Living In-between

I have been a follicular lymphoma patient since 2008. One of the strangest things about this disease is the kind of “in-between-ness” that it can put some patients into. You’re not really cured, but you’re not really sick, either. (Terrilyn McCormick writes about this very well.) You learn to live with the uncertainty.

Way in the back of my refrigerator, there’s a bottle of beer: Three Judges Barleywine-style ale, brewed in 2004 by the New England Brewing Co. The top is dipped in fancy red wax. When the brewery put out the limited special run 15 years ago, I bought a bottle. The flavor is supposed to improve with age, so I tucked it in the back of the refrigerator. I figured I would leave it there for a year or two and then drink it.

Fortunately, my wife is much better at cleaning the refrigerator than I am. Every time she emptied the fridge for cleaning, she’d find the bottle and ask, “Is this still good? Are we keeping this?” And I’d say, “Yes, we are.” After a while she stopped asking and just put the bottle back. And I forgot about it.

So when she found it during one of her cleanings in 2009, she said,” Hey – this is five years old now. Should we drink it?”

And I said, “Well, at this point, it seems like we should wait for a special occasion to open it.” I was a year or so past my diagnosis with follicular lymphoma. I was still watching and waiting. Follicular lymphoma is slow-growing, and my disease hadn’t progressed enough to need treatment. That would come a year after we had this conversation.

We agreed to wait for that special occasion: when I danced with NED.

NED stands for “no evidence of disease.” People in my online support group said “Dancing with NED” when a scan showed that the lymphoma was all gone.

It’s been 11 years now, and I still haven’t danced that dance.

My watching and waiting ended in 2010. My left leg swelled up because of the growing lymph nodes near my hip. My oncologist and I decided it was time to treat. I had six rounds of Rituxan (rituximab), and the swelling went down.

The post-treatment scan showed huge improvement, but it didn’t show that the disease was completely gone. No dance with NED.

I’ve had a few scans since then, and not one of them has shown NED. There’s always been a little bit of cancer still there. Sometimes, the disease is stable. Sometimes, it grows very slowly. Sometimes, it even gets a little smaller on its own.

Indolent cancers like follicular lymphoma can require a special kind of thinking. I’ve learned to live with the in-between — not being in remission, but not needing treatment, either. I’ve spent a lot of time thinking about it. I’ve drunk a lot of beers, but not a Three Judges Barleywine-style ale, brewed in 2004 by the New England Brewing Co. Not yet, as much as I’d love to.

Sometimes, it’s tempting to ignore the things we don’t want to think about — to push the bottle to the back of the fridge and clean around it.

And sometimes, we think about them a lot. We think about them and talk about them and write about them.

That’s how hope becomes a habit. Not by ignoring the things we fear but by confronting them. And sometimes learning to live in-between.

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