Life After Cancer - The Identity That Has No Name

06/18/2010 05:12 am ET | Updated May 25, 2011

A funny thing happened on the way to making a documentary film about, among other things, my life as a longtime cancer survivor. With the cameras rolling, I received some unsettling medical news.

this is the dress rehearsal / when the body / like a constant lover / flirts for the first time / with faithlessness - Linda Pastan, from "after minor surgery" in Waiting for My Life

When was the last time you heard the word remission, as it applies to cancer? It has a comforting etymology - meaning "to release, as from a debt" - but with an overtone of tentativeness. As though the voided debt to death may prove only a temporary forbearance.

But you don't hear the word remission much anymore from the cancer advocacy community. Instead, life after cancer is all about survivorship now. As defined by the National Cancer Survivors Day Foundation, a survivor is "anyone living with a history of cancer - from the moment of diagnosis through the remainder of life." In this way, all of us who have ever been diagnosed with cancer are automatically enrolled as members of the survival club, and you get to be called a cancer survivor even if you don't survive your cancer.

The word survivor does have some attributes to recommend it. With its echoes of the Holocaust, the survivor label reminds us that cancer is an extreme experience that cleaves one's life into before and after. It also evokes the notion of survivor's guilt, which is a genuine part of the post-diagnostic experience - stoked as it is by the cruel and inexplicable whimsy by which cancer hauls some of us off to the death chamber while sparing others. (And tell me again why exactly I deserve to carry on?)

And yet, as author Barbara Ehrenreich notes, the survivor tag makes cancer sound ennobling and oddly positive. By focusing our attention on the transformative moment of the diagnosis, the word ignores the causes of the disease. And, by declaring irrelevant the ultimate success or failure of medical treatment, the word survivor also ignores the future.

Cancer has now become the leading killer of middle-aged adults in North America. Cancer incidence among children has risen sharply. But the word survivor, as applied to anyone who has ever heard the words You have cancer, does not show us these trends. Used in this way, cancer survival is a condition that exists only in the present moment.

Nevertheless, it's a word I use about myself, a thirty-year bladder cancer survivor. I guess I don't know what else to say. Admittedly, for those of us with this particular cancer - a disease that recurs in fifty to seventy percent of all patients - the word is inept. The refrain of the Holocaust survivor - Never again! - is not operative here. And even if we don't go on to sprout more tumors, bladder cancer patients live in a perpetual state of medical surveillance. Cystoscopies, renal sonograms, cytology exams, urinanalyses, intravenous pyelograms: a lifelong loop of medical testing. If it's Thanksgiving, it must be time for a cystoscope.

Sometimes the results come back ambiguous. And then the wheel of medical detective work spins even faster. Typically, during those intervals, cancer survivors (well, you can't really call us cancer patients - not yet, anyway) get very quiet. We can't really say we've had a recurrence. And we can't really say we're fine. So we keep our own counsel.

Besides, what's required in those moments of medical ambiguity is a kind of psychic high-wire act: vigilance without panic; active engagement in a process whose results might render us helpless; searching carefully in the hope of finding nothing. One wrong word from an inquiring friend - a little too much concern here or a tad too much reassurance there - might make us lose our balance.

Just how unbalanced I recently found out.

Last year, the cells collected during a routine cystoscopic check-up were flagged as abnormal by a pathology lab. There was also blood in my urine. In addition to these unfortunate findings, there was another difference between this particular cystoscopic exam and any of the other seventy-odd cystoscopes I've undergone: it is a scene in a movie. No kidding. For this particular exam, I brought a camera crew into the procedure room with me.

It seemed like a good idea. The film was to be an adaptation of my book, Living Downstream, which explores the environmental links to cancer as well as my life as a, um, survivor of an environmental cancer. The cystoscopic exam - which uses a fiberoptic tube to examine the interior landscape of the bladder - is a big part of the bladder cancer experience, just as the mammogram is for breast cancer. Except that cystoscopy is actually a much better tool for early detection than mammography. And yet, most people have no visual images of the procedure, despite the fact that cystoscopes demonstrably save lives. Who better than me to serve as a native guide to the world of bladder cancer screening?

When the troubling news came from the pathology lab, I knew in my heart that I should narrate these results on camera as well. And so I did. The film's director and editor then deftly wove theses scenes into the larger story. Together, we decided to leave the eventual resolution of my own medical situation out of the narrative and allow the audience to experience the ambiguity that is so familiar to people with cancer histories - but maybe is not so familiar to those without.

That's when my email box started filling up with contradictory messages. I am SO SORRY to hear that you have cancer again! said one, whereas the next one exclaimed, I'm glad to know you're okay! Phew! Reviewing the film, the local newspaper reported that I had recently experienced another "bout with cancer." Since this was not an accurate statement, I asked the reporter to run a correction and meanwhile braced myself for expressions of sympathy. Indeed, the very next day, the teller at my neighborhood bank burst into tears when I stepped up to the counter. But before I could amend the newspaper story for her, she insisted, So you're fine now. Right?

At this point, I was nowhere near the high wire anymore. I was freefalling into Spookville.

Maybe the cocky survivor label is not the sole source of my problem here, but it surely contributes. It obscures the recurring ambiguities and uncertainties about the future that so many people-with-cancer-histories must embrace - sometimes for years on end.

In this, I feel a stronger kinship with the Intersex Society of North America than I do with the National Cancer Survivors Day Foundation. The ISNA advocates for children with ambiguous sexual anatomy. Is it a boy or girl? is the first question asked when a baby is born. For children who do not fit neatly into discrete gender categories, notes the organization's website, the question can be a treacherous one. As it is for so-called cancer survivors when we are asked, Are you fine? Or not?

Sandra Steingraber is the author of Living Downstream, newly published in second edition by Merloyd Lawrence Books/Da Capo Press to coincide with the release of the documentary film adaptation. The film will have its Washington DC premiere on April 25 at 7pm and will be followed by a Q&A session with Sandra and a book signing of the second edition. This essay is one in a weekly series by Sandra exploring how the environment is within us. /