For most people with cancer, life has conventional stages that I can sum up with acronyms: B.C. (before cancer), A.D. (at diagnosis), S.S.N. (some surgical nightmare), RATS (radiation therapies), ICH (in chemotherapy), followed by IRS (in a remission of some number).
Like a growing number of patients today, I inhabit a less familiar state: maintenance. This new phase presents a viable alternative to remission which, I sometimes feel, is not everything it is cracked up to be.
Why does cancer’s version of “IRS” spawn fears that can rival those spiked by a letter from the other I.R.S.? The short answer: remission is challenging. It comes with fear of recurrence. It’s impossible not to worry: Will it last? Throughout three cycles of chemotherapy for ovarian cancer, I longed for the moment when the infusion of toxins would cease, only to discover that all sorts of physical and psychological aftereffects dampened my spirits during remission.
First, consider the all-consuming issues of hair and weight. “It’s just hair and it will grow back” is a theme song many of us hum in treatment. But if it grows back curly when it had been straight or white when it had been brown or thin when it had been thick, it can be distressing to look in the mirror. Also, it does not always grow back, as I can unfortunately attest. Similarly, the weight lost or gained (yes, it can be gained) during chemo may continue falling or rising after its cessation.
Even when the women in my support group managed to look nearly normal at the start of a remission, their families’ belief that they were as good as new bred dismay. Dana and Traci’s teenagers wanted them to host social events and go hiking. Kids relieved that they no longer have to parent their parents may feel they have earned the right to think, “Hey, we didn’t have any fun during treatment so it should be party time now.” But fatigue, muscle loss and neuropathies, not to mention the insecurity they spawn, make such expectations daunting.
After I told Dana and Traci’s stories to my husband, he said, “You have the advantage of being married to an older man: joint decrepitude.”
Before cancer I would cook for a dinner party of eight planned for the same evening. During chemo, I could not stomach the meals that friends provided. In remission it took a week of planning and concocting foods that could be reheated or else I would keel over while proposing a toast. Before cancer, I could walk a few miles. During treatment, I lay on a blue couch. In remission, I forced myself to bring in the mail. Whereas during chemo I had a good excuse for not changing the sheets every Sunday, in remission I judged myself an incorrigible sluggard.
Then there is the real kicker of being an ingrate. Surely remission should be the promised end. So why did I experience it as another version of the horrors of treatment?
Oddly, then, it comes as some relief to inhabit a state outside the normative categories. I am now neither in chemotherapy nor in remission because I am being treated with an experimental, targeted drug. While the cancer can be controlled with daily pills, I am “on maintenance”: Stable until the medication fails to work. Whereas in remission I worried about not being regularly checked by my oncologist, on maintenance I know that I will be monitored.
It is hard for many acquaintances to grasp my situation. People often congratulate me on being “cancer-free.” The comment puts me in a funk. But who wants to be a pedantic downer insisting that her disease requires constant treatment or it would come roaring back? Such a bad attitude would make me vulnerable to the all-too-common view that pessimism breeds disease and that I deserve the cancer I dread.
Thinking logically, I know that it is far better to be in a remission than on maintenance. After all, a lengthening remission may signify a cure. Nancy K. Miller, a writer and friend dealing with lung cancer, says, “The problem with maintenance is it has no plot.” But I’m not sure I agree. The plot of remission — will it last? — seems more anxiety-producing than the plot of maintenance: how long will it last?
I often feel relief at not being burdened by hope of a cure — as if Sisyphus got a chance to admire the view from the mountain after someone else erected a temporary barrier to stop the boulder from rolling down. It probably will eventually roll down, flattening me. But did I mention the view?
Assuming that the cancer will return means one less thing to worry about, weird as that might sound. Once cure has been crossed off my list of priorities, other goals spring up: visiting with family and friends as much as possible; making loud noises on any and all occasions about the need for better detection and prevention; standing up to look at the longer vista as a grateful representative of what contemporary science can do.
Having lived with incurable but not terminal cancer for some years, I try not to torture myself with suspense. Why waste the precious time granted? On good days, feeling meditative, I conceptualize being on maintenance as inhabiting the incantatory zone of “OM.”
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