Meet my friend Ned

When I used the term “cancer survivor” in my last post, I did so self-consciously. It’s a label I attach to myself reluctantly. It sounds so…manipulative. So far, I haven’t come up with a better way to describe where I am in the process of surviving cancer, of not knowing whether or when it might return. Calling myself a cancer survivor bothers me for a couple of reasons.

First, cancer is not the most important thing in my life. Even when I was being treated and had been knocked sideways by interferon, “cancer” was not who I was. I understand that some people need or want to identify with their diseases, in part because it explains the difficult circumstances of their lives. It gives them the capacity to focus and to contend emotionally and intellectually with an enemy. I don’t look at my cancer as an enemy. It’s simply an immutable condition of my life. It is, in fact, at times a teacher. If I wanted to be discrete about the disease, I suppose I wouldn’t be blogging about it. But I don’t advertise the fact that I’ve been visited twice by cancer either. Unless people ask, they’d never guess I’d been treated for advanced melanoma. The same could be said for many others who have rebounded nicely from treatment, as I have.

Second, by the time we reach our 50s, aren’t we all survivors of some description or another—physical or emotional? People who have strokes don’t tend to describe themselves as “stroke survivors.” If I was bipolar, I wouldn’t say I’m a “bipolar survivor,” even though I might have been diagnosed decades earlier. Calling yourself a survivor of anything strikes me as an attempt to sound heroic. A hero might be a researcher or doctor who discovers a cure for melanoma, or possibly someone who patiently nurses a loved one through cancer to the end. A hero is not the person who, arbitrarily, got a disease, was treated and happened to live to talk about it.

(You could argue that a survivor is simply someone lucky enough to not yet have died. As the economist John Maynard Keynes once said, “In the long run, we’re all dead.” So survivorship is, relatively speaking, only my temporary state—and yours, in case you didn’t know.)

In the interim, the issue remains: How do I describe where I am relative to cancer? It’s been almost a year since my lymphectomy, so that makes me about 11 months NED. That acronym won’t be familiar to you if you haven’t been around people with cancer; it means “no evidence of disease.” It’s a medically accurate term in that it presumes nothing about the future. If someone who has had cancer has no evidence of disease, then that’s great. In fact, it’s worth celebrating. It doesn’t mean that person is cured, however. You’re only NED until something else happens. And, I might add, you never cease being NED, even if the cancer never returns. NED is your constant companion; it sleeps next to you at night, and has very cold feet.

The other common expression I’ve heard myself use—and wondered at what I meant by it—is “I’m in remission.” If using “NED” is a pedant’s attempt to be medically precise, then “remission” is simply giving up and letting people jump to their own conclusions. For most people, it means the disease has gone away and hopefully won’t come back. It’s part of our common vernacular, so it works at that level. When I tell people I’m in remission, they typically either press for details or simply nod and say something like, “Well, you sure look great.” (Except for the hair; see below.)

What stating you’re “in remission” fails to take into account are survival odds. I’m immune from ever being called a cancer fraud because my melanoma was advanced—stage IIIc, to be precise. I’m now 11 months NED. I am—gratefully, joyfully—in remission, as that term is understood. But someone who had stage 0 melanoma (yes, there is such a thing) could say the same thing at the same time interval, and it would mean next to nothing. As for someone who is stage IV, being in remission is a profound comfort, whatever its duration. Some people manage to live years after arriving at that grave juncture, but most don’t. It’s then that doctors start using terms like “terminal.” And we’re not talking trains.

I was curious enough about this matter of how cancer survivors describe their health status that I posted a question on a bulletin board for melanoma patients . I wanted to know what idioms worked for others who, like me, struggle to find the right words.

The response was meager. On a site where some questions or comments regularly provoke dozens of responses, I got only two. Debbie in Virginia put it this way: “Remission should cover it...but for those that ‘need' more info, I tell them, proudly: ‘I have exceeded my expiration date by 18 months.’ After they lift their jaws, we usually toast. A fine chardonnay will do nicely.” Debbie’s cancer is stage IV. She deserves a toast.

I want to communicate well on this point because I believe what I say about cancer and about life counts for something. What others tell me about their struggles also counts. I think that if we were better at telling our stories, and at finding the right balance of candor and discretion, we might make this a slightly better world. Words matter. What we tell others is important, because done well, it opens windows of understanding. I will continue to search for better ways of explaining what it’s like to live after cancer. I figure that if I talk and write about it enough, it will make more sense to me. My investigation continues.