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When cancer smells like love

My husband stands several steps behind me, understanding my turned bare back as a signal not to approach. He says simply, ‘Can I help?’

Catherine Moseley Clark and her husband, Bruce. (Trevor Veneman)

The dank, loamy smell fills my nostrils. I turn my head but cannot escape the odor. It emanates from me, this nauseating scent of sickness and neglect.

It is five days since the surgery, five days since my right breast and multiple lymph nodes were removed. I cannot bathe or shower. The dressings on my chest must be kept dry; so, too, the surgical drains dangling from my chest. The sweat of the past week is pungent, locked under the arm pressed closely and protectively against my side.

I stand at the bathroom sink, gingerly attempting to inch my right arm away from my body. I want only to pass a moistened washcloth under my armpit. By eliminating the odor, I feel I will reclaim myself. But my right arm remains stubbornly pressed against my side; neither Percocet nor Vicodin dull the pain enough to allow such movement.

My husband stands several steps behind me, understanding my turned bare back as a signal not to approach. He says simply, “Can I help?”

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At that moment, I realize that I cannot wield the washcloth with my left arm across the front of my body; the slight weight of that arm pressing against my flattened chest is too much. But I want to shield my husband from an unsavory task, to protect his image of me — my image of myself — as whole and clean, competent and able.

“No, thanks,” I say, without turning my head. “I’m fine.”

I was alone when I first felt the gut-punch knowledge that something was terribly wrong. The lump had, of course, produced some anxiety, but my gynecologist assured me that it was probably no more than a cyst. A mammogram a mere three months earlier had shown nothing; how could this lump, suddenly palpable beneath my fingertips, be a problem?

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But when, after another mammogram, the technician returned and said, “The doctor wants to do a sonogram,” my stomach contracted. When the radiologist walked into the room, I knew. The radiologist is not supposed to come into the room. The radiologist is supposed to remain anonymous, conducting some routine activity in the unseen background, allowing the technician to emerge and brightly say, “You’re good to go; see you in a year!”

As the radiologist spoke to me — about contacting a surgeon, about the urgent need for a biopsy — I experienced what would become an unpleasantly familiar sense of disconnect. As I struggled to pay attention, the only thought that registered was a distant awareness that I’d broken out in a sweat.

Upon leaving the office, my first call was to my husband. In our 20 years of marriage, we had been lucky, our partnership unchallenged by significant illness or disease. But now, together, down the rabbit hole we went.

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Our first visit was to a surgeon for another sonogram. As I watched the image appear on the screen, the doctor gently but clinically pointing out the shadowy fingers of a cell structure gone awry, my mind leaped backward. For a moment, I was on a different table, in a different doctor’s office, where my husband and I stared at a different image, astonished and taking on faith that the little pulsing shadow was our baby’s heart.

I want that sonogram, I thought. I don’t want this sonogram.

I returned to the surgeon for a lumpectomy, deemed to be the wisest form of biopsy technique in my case. My husband waited while I, at least, had the brief respite of being put to sleep. Several days later, we returned to the surgeon’s office to learn the results.

My husband joined me in an examination room where, after checking my incision, the surgeon was direct. Although the tumor was small, it was malignant and fast-growing, and it had begun to spread.

“Go ahead and get dressed,” he said, “We’ll talk in my office.” My husband and I didn’t speak as I removed the medical drape and put my clothes back on.

Joining the surgeon in his office, we entered a strange new world indeed. A world of “invasive ductal carcinoma,” of “no clear margins.” A world in which having options suddenly meant a choice between a substantially disfiguring second lumpectomy or having one or both breasts removed. Thinking of my two children, my husband, my family, I chose the mastectomy.

Our parallel universe expanded with our next visit, to a plastic surgeon. He was kind, but I felt like a lump of meat as he drew on my body with a purple felt-tip pen, illustrating my breast reconstruction options. TRAM flap? Purple lines horizontally above my pubic bone, an oval around the potentially useful flesh of my belly. Tissue expander followed by an implant? Purple lines bisecting my chest, then encircling the targeted breast. Returning home, I discovered that, contrary to the doctor’s assurances, the purple marker did not come off easily with soap and water.

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Now it is five days post-mastectomy and insertion of the tissue expander that presses hard against my chest wall. The yellow-orange stain of surgical antiseptic is sallow on my skin, accented by the remains of purple felt-tip-pen markings that are not hypothetical indicators this time.

We have a journey yet ahead, of chemotherapy and exhaustion, of work calls taken while easing loosened clumps of hair from my tingling scalp, of endless doctors’ appointments, of an abrupt and unceremonious admittance to menopause. But at this moment, at my sink, I don’t know any of this. All I know is that I feel disgusting, helpless, weak, and I don’t recognize this version of myself.

Washcloth uselessly in hand, I turn to my husband, who waits patiently. I don’t want him to see me like this. I don’t want him to clean the sweat and stench from me. I don’t want to need help.

Yet I am humbled by the intimacy of this moment, by my husband’s tenderness. He loves me and wants to do this for me.

I love him, and so I let him.

Catherine Moseley Clark is senior vice president and general counsel of the Henry M. Jackson Foundation for the Advancement of Military Medicine, a nonprofit organization dedicated to medical research and public health. This article was first published in Pulse: Voices From the Heart of Medicine.