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.

August 11, 2013 — Bye, Bye Scans

So, this past Friday I go to see Dr. Lerner. It’s a routine, 3-month appointment, with port flush. I get the flush, I go for the blood draw (necessary because my port no longer works both ways - just going in, rather than taking out), then it’s out to the waiting room for a while.

Into the examining room, the nurse does the intake interview, and the doctor comes in. Dr. Lerner starts looking at the computer screen, reviewing my records. As he does so, he makes it clear he’s no fan of using the computer for patient records. (Those 3-inch-think files have been a thing of the past, in his office, for the past half-year or so.) He explains the insurance companies have forced it on them. He doesn’t like it much, because he has to spend half the time, during an examination, staring into the screen, rather than looking at the patient.

I have to say, I’ve noticed the same thing. It makes the doctor appear disinterested in the patient as a person, which I know is not the case with Dr. Lerner. It’s all about body language, and he knows it. He’s wishing he could do something to overcome that, but he can’t.

Anyway, here’s the real news. Towards the end of the examination, I ask him if he wants to schedule another scan. It’s been about 6 months, my usual interval these days.

Looking back over my records, there on the screen, Dr. Lerner says no, he doesn’t think so. With my last chemo in the spring of 2006, a recurrence 8 months later, but no change ever since, he thinks we can probably stop doing scans altogether. He still wants me to come in every 3 months for blood work and a physical exam (feeling for swollen lymph nodes in my neck and under the armpits), but he doesn’t think the CT or PET scans are called for any longer. If I experience any of the typical lymphoma symptoms in the meantime, I’m to call him, and he can always order a scan on that basis.

Wow. A milestone. These regular scans have been a part of my life for the past 7 years or so, but now that part of my cancer journey seems to be over. I take it to be a very good sign. The doctors don’t use the word “remission” with an indolent lymphoma like mine, but sometimes they do reach the point when it seems to make sense to just wing it without the scans.

Dr. Lerner also says I can get my chemo port removed, at long last. Those monthly “oil changes” (my port flushes) have likewise been a part of my life for the past 7 years.

It’s up to me, he says. I can call Dr. Gornish, the surgeon who put it in, and ask him to take it out. It’s a simple surgical procedure, done in his office. Local anesthesia: just some lidocaine, a quick cut with the scalpel, and he yanks the thing out.

I do feel some trepidation about that, because I’ve heard tales from other cancer survivors about how getting that port removed with just local anesthesia is sheer agony – brief, to be sure, but agonizing all the same. Mine’s down pretty deep, too. But then I’ve heard others say it’s not so bad.

Guess we’ll see about that. I’m eager to have it out. No more monthly needle sticks.

So, all in all, it’s pretty good news.

I'll take it.

April 15, 2007 - The Only Constant

I've been struggling for a while to put into words what I'm feeling, as a cancer patient in remission, but it's like nailing the proverbial jello to the wall. I'm no longer sick, but I can't declare with complete confidence that I'm well, either. Not while I'm still going for scans every three months.

What is remission, anyway? It comes from the Latin remissio. Its primary meaning is forgiveness: the remission of sins. It can also mean forgiving or canceling a debt – or, a prison sentence. (In the hackneyed words of the film noir ex-con, does that mean we patients-in-remission have "paid our debt to society" – or, more accurately, to the stern gods of modern medicine?)

Running my finger down the list of alternative definitions of "remission" in my Shorter Oxford English Dictionary, I come to these ominous words:

"A reduction in force or intensity; a decrease or abatement of a condition or quality, esp. of heat or cold. MEDICINE. A lessening in the degree or intensity of an illness; the temporary disappearance of symptoms."

Oops. I wish I hadn't read that. I don't like seeing that word, "temporary" – not when it's closely followed by "disappearance of symptoms."

Of course, some cancer remissions go on for years and years, until finally – like some hide-and-seek kid emerging, blinking, into the light, hours after the seeker has given up and gone home – there comes the cautious assessment that there's nothing temporary about this remission at all.

Now that I've got my hair back, and have returned to my normal activities, I've been hearing more and more people ask, "You're cured, right?" (Some folks are very eager, indeed, to hear the "cure" word.)

I usually correct them, saying something like, "No, it's still too early to use that word. I'm in remission. I go for scans every three months. So far, so good." (I wonder, will I ever be able to use that word?)

I've been reading Jonathan Alter's political columns in Newsweek for years. I didn't know, until I saw one of his more recent contributions to the magazine, that he's a non-Hodgkin lymphoma survivor (in his case, it's the mantle-cell variety). Like me, he's in remission. His words capture the odd, in-between state I feel like I'm in these days:

"The only constant in cancer is inconstancy; the only certainty is a future of uncertainty, a truism for all of modern life but one made vivid by life-threatening illness. According to the latest projections, a third of all Americans will be diagnosed with cancer at some point during their lifetimes, most likely when they're old. Many will never achieve remission at all, while the lucky ones like me get to live with a sword of Damocles hanging over our heads. A friend compares his semiannual scans to visiting a parole officer. When the scans are clean, it's worth another six months of freedom, though with no guarantee of extra time for good behavior."

"Lucky," you say – with the sword of Damocles dangling over your head? You call that luck?

In truth, it is. For most blood-cancer patients, the doctors simply don't possess a rubber stamp with the word "cured" on it. My medical file is fated to grow thicker and thicker. Let's just hope it bulges with reports of clean scan results, rather than tracking sheets for new chemotherapy or radiation protocols.

You're right, Jonathan. For people like you and me, the only constant is inconstancy.