Saturday, October 13, 2007

The Sick and the Not Sick (Yet)

In honor of National Breast Cancer Awareness Month, I would like to submit a piece I wrote about my sister's battle with breast cancer many years ago. Unlike many women, she survived.

My sister and I were born one year apart, me first. Our mother dressed us alike for as long as she could and spoke of us fondly as her Irish Twins, which we loved. She also gave us similar names, both beginning with “K.” (We did not know until I looked up the term on Wikipedia that “Irish Twins,” a shared identity we used so proudly and happily, is considered as an ethnic slur.) Instead we relished how close we were in age, my sister sleeping on the bottom bunk, I on the top, sharing everything we owned and dreamed and feared.

She and I were bookends, for as much as we looked alike, our personalities were opposites. Until we were grown, everyone found this amusing. She was as calm and reassuring as I was fiery and impetuous. To this day, I tell people that she’s “the nice one.” In adolescence I experimented with every limit, knowing I could depend on her to rescue me. More than once my sister dragged me into a cold shower and cleaned up incriminating messes before our parents returned home. She ran down the beach calling for me when I had allowed an older boy we didn’t know to lead me to a secluded perch with a view of the ravine. Her fire rose mostly when people cut me with remarks I had all but asked for. If my sister heard someone say something less than kind about me? Hands on hips, she’d stand up and rebuke them.

While I smoked, ran around on minimal sleep, ate whatever was handy, if it was handy, and joined in any revelry to which I was invited. My sister never smoked anything. Her meals were healthy and regular. All her boyfriends were gentle and decent. She didn’t gamble with fate or race against deadlines, and dressed so modestly one might decide she had a penchant for “old world” decorum.

She may have saved my life more than once. Hers, while we were growing up, never seemed in danger.

Then almost twenty years ago, when she was pregnant with her second child, my sister confided in me that one of her nipples had retracted. Her gynecologist had insisted that it was nothing to worry about, but her intuition told her something was wrong. We agreed that she needed make sure her doctor understood how much this frightened her. For the second time, her doctor told her it was not a reason for any distress and would probably reverse itself as her pregnancy continued. It did not.

My sister was not quite thirty years old and lived in a Midwestern town with a large and excellent state university. Her doctor’s opinion that a retracted nipple should not cause her anxiety was not necessarily wrong. A retracted nipple can indicate a variety of changes underway within a pregnant woman’s breast. Malignancy is one possibility, though not the most likely.

On schedule, she gave birth to a strong healthy little boy. But as her body returned to its non-pregnant state, the nipple remained retracted. Before long, she told me, “Something’s wrong; I can fell it.” The same day when she telephoned her doctor and insisted, “I know something’s not right. Please don’t suggest ‘watchful waiting.’ This needs attention now.”

Today, I believe, doctors will respond to a woman’s strong sense of her own body without prodding. But this was more almost twenty years ago. My sister, calm as ever, matched his ready dismissal of the situation with stubborn persistence; she would not be satisfied until he had prescribed another mammogram for her. He finally did so, letting her know he considered the measure wasteful and frivolous.

Only later did we learn that this mammogram showed unusual calcification. But then as now, mammograms are only as good as the expert reading them. Calcification in a young woman can signal abnormal growth. Some calcification in a forty year old woman, on the other hand, is normal.

Her doctor’s diagnosis reverted back to the maddening, though still prevalent “do nothing yet,” officially termed “watchful waiting.” Her doctor told her, mostly as a precaution (again, experts knew less about breast cancer then, especially in premenopausal women) to schedule another mammogram for the following year, stressing that even this was purely a precaution.

Although she whispered to me how worried she felt, doctors and various non-experts, trying to be helpful, told her not to be silly. “Nothing’s wrong.”

Her three-year-old son and his infant brother kept her busy. Always generous and unselfish (compared to most people, not just me) she probably worried more about her children and their persistent ear aches than she did about herself. Her life’s ambition was to rear a big family. I remember her saying when we were still children ourselves that she thought six kids sounded right to her.

When she tried to get pregnant again, it didn’t happen right away as it had before. She visited her gynecologist and again showed him the retracted nipple. Again she told him that she was convinced something was wrong. She could tell.

When the doctor arranged another mammogram for her, the radiologist discerned a three-dimensional dot, which made a biopsy possible. This was scheduled for the following week.

Many women, some middle-aged and some still in their twenties, undergo biopsies every year. And the great majority of biopsies prove the spot or bump is benign. Either way, however, a breast biopsy requires involves a sonogram, which indicates to a technician where to plunge a wire into the woman’s breast, and how to manipulate it from the outside until the wire forms a loop around the suspect bit inside the breast tissue.

Uninitiated to surgical rules, I’ve never understood why such a tedious and painful procedure must be accomplished without allowing the patient any sedative or analgesic. No doubt there are reasons. But no one has explained them to me, perhaps because I’m too hung up on the deep puncturing, the spurting blood and awful dread of the diagnosis.

Usually in a biopsy, the breast tissue is extracted and sent to a laboratory. The patient then waits anywhere from a few days to week before learning whether the lump is benign or malignant. In either case, though, a delayed report does not portend good news or bad. The verdict of sickness or health remains in darkness.

Every once in a while, however, when the disease is clearly identifiable, the surgeon can make an on-the-spot diagnosis, which prompts the removal of lymph nodes, in order to provide some evidence as to the extent of a malignancy and how far it has likely spread or not.

My mother telephoned at one p.m. My sister, who had never risked her health or dignity, now had breast cancer. Hearing this, I wailed—it just was not possible. And my mother’s voice snapped. K needed my support. For once I must rise to the situation and present her with calm reassurance.

I talked to my sister at three p.m. She was still groggy from the surgery, which had scooped out the abnormal cells, tissue advanced enough to be declared cancer well before any extensive laboratory analysis. She sounded small and innocent, my Irish Twin, and if I were by her bedside, her hand would be cold enough to alarm me, just as it had when we were pre-schoolers waiting to cross the street.

The pathology report had found two out of twenty-one lymph nodes affected, which translated into a fighting chance. My sister’s cancer was not estrogen-related (apparently several, perhaps hundreds of , discrete types of breast cancer can lie dormant—and then one day not dormant—in women’s breasts.) The doctors gave her a choice: lumpectomy or mastectomy and six months of chemotherapy. K chose the latter. Her intuition demanded a mastectomy, and once again her intuition proved correct.

After her breast had been cut off, including lymph nodes and some underarm muscle, the second pathology report revealed two types of cancer: K had had a tumor, which had attached to her nipple, pulling it in. A lumpectomy that left no nipple was not an acceptable option to her aesthetically, though it might have worked had the surgeon managed to cut out every last renegade cell. Further analysis, however, showed that a second kind of cancer had infiltrated every duct and blood vessel. So a lumpectomy would not have sufficed and might even have incited more growth, whose only outcome could be metastasis.

My sister, as I have indicated, is unusually conservative in manner and expression. She also has an extraordinarily high pain threshold. Throughout our childhood, she weathered several (sometimes exceptional) childhood injuries in good spirits and patience. But a mastectomy is radical surgery, and she returned home in great pain. But for some reason which remains a mystery, the doctors had neglected to prescribe any pain killers. By the time she finally requested and got some, she had undergone the worst post-operative pain. (If you or anyone you love must undergo major surgery, demand adequate pain killers. Most doctors, I would think, will prescribe them as a matter of course, but be sure to ask for them anyway.)

This ends part one of a three-part post. To read the rest, please click here.