January 27, 2014 - Never Off-Duty

Today I run across a blog posting by a fellow lymphoma survivor, Ethan Zone. He reflects on how difficult it is for anyone who hasn't walked this particular road to know what it's like to live through months and years of survivorship, following treatment.

Most people, he says, think the battle is over when that blessed word "remission" first falls from our doctor's lips. But that's not so. It's something like a Cold War that only begins after the "hot war" ends:

"The general perception of cancer – especially in this rugged-individualist, pull-yourself-up-by-your-bootstraps country – is that there are winners and losers. We prefer to see it like a football game: you either beat cancer and win the Superbowl; or you lose to cancer, and sayonara, shiny trophy/life! There is no in between. The reality of my situation is that I did everything in my power to beat cancer, and I did. But the cancer came back, and my life got blown apart at the seams all the same. And I think that’s okay, too. There are millions of people out there living with cancer, longing for stability, and functioning with the reality that this horrible disease may come back."

Many of us assemble posses during the active phase of our treatment. Good people present themselves - family and friends - to help us with chores, offer us rides, pray for us, offer encouragement. These are some very special people, whose positive effect on our struggle with the disease is incalculable. Yet, there comes a time - for those of us who do achieve remission - when most of them slip away, with a smile on their faces.

That's as it should be. There are others who need their help more. Yet, few realize that, for the patient, the struggle isn't over. It's only entered a new phase:

"I have come to realize, however, that people tend to join your regiment during the arms race build-up between a cancer diagnosis and the execution of the treatment protocol. But afterwards, once the immediate danger (as they presume it) has passed, they tend to forget all about the 'war,' their shiny 'weapons,' and they slip back into their normal, civilian lives. And my point isn’t that they are thoughtless, because they aren’t. They just don’t know. But those of us who do know don’t forget. The psychological hangover is long and dark. Of course good news deserves a euphoric dance party, but it’s important to remember the post-remission patient because there are dump trucks full of uncertainty and invisible scars that need healing."

I've never been fully sure whether or not I'm in remission. Eight months after my last chemo treatment, in 2006, some signs of returning cancer started showing up in my scans. Dr. Lerner was able to see some low-level recurrence, but he assured me that what I have left is an indolent form of the disease, and the most appropriate response is to "watch and wait." This we did for the next several years, merely noting the new tumors on the scans - until, 2 or 3 years ago, the hot spots stopped showing up altogether. And still we watch and wait, even if there's no longer anything to watch.

Were these just scan anomalies? Or did my out-of-remission cancer simply slip below the radar, where it's still indolently lurking, ready to return someday?

No one can say. It's been more than 7 years, now, since my treatment ended. The old conventional wisdom is that after 5 years of no recurrence, you're "cured." Yet, I've been told that particular "c-word" can never be applied to my situation - because indolent cancers, by definition, are very good at hiding. Sometimes, for long periods of time. Which means you never feel like you're completely out of the woods.

Thanks to Ethan, for describing it so well.