Living With Cancer: Bedtime Issues

Like the other women in my cancer support group, I have been trying to salvage aspects of the person I had been before the diagnosis.

In my case, I longed for the drugless sleep I enjoyed before I began having to take the sleeping pill Ambien. Ambien can cause amnesia, confusion, missteps and falls. I wanted to wean myself from dependency, to recover at least one aspect of the person I previously had been, so I began cutting the five-milligram pill in two, and then prepared to stop taking it altogether.

Ever attentive, my husband, Don, suggested that I use an over-the-counter sleeping pill sold by at the grocery store in the transition. I wasn’t surprised to find myself leaving my bed at 12:28 a.m. to play computer Scrabble. What did discombobulate me was the heavy weight of sleep when it finally arrived: layers of dense batting that suffocated me even after I struggled back to muffled consciousness the next morning and then contended with a daylong hangover.

It turns out that each pill has 25 milligrams of diphenhydramine HCI, the antihistamine in Benadryl. I gave up and went back to cutting the Ambien in half.

Before diagnosis I never needed a sleeping pill. But my former self is gone — because of residual surgical damage and heightened anxiety about recurrence, but also because of the long-lasting aches and pains after chemotherapy. Gone, too, is my blithe confidence in my physical resiliency.

The burden my diminishment places on my husband most distresses me. Without Don as my moral compass — how I worry that my needs exhaust him, now in his 80s! — I could not keep up the rigorous rounds of grocery shopping, cooking, laundry, garbage disposal, bill paying and hospital visits that we undertake together. And, most of all, how could I attain the buoyancy of spirit that comes from a shared joke, a tender caress, a collaborative recollection?

For several of the younger women in my support group, surgery, radiation and chemotherapy brought about a dramatic disconnection from their previous selves: the early onset of menopause. Hot flashes, mood swings, inelastic skin and bone loss upset them, but less than a plummeting sex drive. Like me, they have intimacy with their partners; what they don’t have and want to have are orgasms.

At a recent lunch meeting, one member of my group triumphantly displayed a gleaming silver bullet. We passed it around, wondering what it could be: thicker than a pencil and two inches long, it was too heavy to wear as a pendant. Laughing, she told us it came from an “adult fantasy store” and clicked a tiny switch so it vibrated in our palms.

Amid an avalanche of talk about medications and creams, another woman described a consultation she had had with a sex researcher who had given her a bag with graduated dilators and a hot-pink gizmo called the Rabbit that, she admitted, put her off. “But the information helped,” she added. “Lovemaking is not what it was, but it did get better.”

This young woman was appalled that no one in the medical establishment addressed the sexuality problems she had encountered. “Sex toys should not be lurid subjects avoided or addressed with a wink,” she said. “Hospitals need to provide informational packets as well as reminders that the mind is the biggest sexual organ. When radiation and chemotherapy end, there should be post-treatment counseling.”

As she then confided her New Year’s resolution — to work with the local cancer center to redress the absence of remedies — I thought about the oddity of the problem. We are bombarded by hypersexualized images on the Internet and on television, but puritanism reigns in the offices of radiologists, oncologists and social workers. My support group friends had lost not just sleep, but pleasure and a significant aspect of their identities as women.

Realizing that at different ages we mourn different losses, I reveled in my comrades’ gleeful efforts at recovery. Just that week a colleague closer to my age had said after treatment: “My life is so reduced. Who was I? Had I ever been the person I was?” At least my lunch mates could remember who they had been and were seeking routes of return.


Susan Gubar is a distinguished emerita professor of English at Indiana University and the author of “Memoir of a Debulked Woman,” which explores her experience with ovarian cancer.

April, 2014

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