Breast Cancer Family

I’m doctored out. The super specialization of American medical training means that you can wind up with a snowballing number of doctors and appointments as each one sends you to somebody else. Today is Dr Park, the breast surgeon who took over for Dr Cait who actually did my surgery a couple of years ago, slicing what looked like the smile of a smiley face along the bottom of my left nipple so skillfully that now you would not know anything had happened. This is a major contrast to the procedure I had in 2003 at St Vincent’s, where Dr Axelrod, a well-known breast surgeon, decided to operate without anesthesia because my liver enzymes were high on the day of the procedure. They had me lie with my arms outstretched like jesus on the cross, and tied them down, and then covered my eyes with something that resembled a pillowcase so I couldn’t see. She used local pain medication, but I could still feel the pulling and the prodding, and then sharp pain when she ventured beyond the numb section. An observing medical student saw the pain on my face and alerted her to add more anesthetic. That procedure was so brutal that years later when I described it to another doctor, she asked what country I’d had it done in and it left a dent that is still noticeable all these years later. This the burden of being part of a breast cancer family. I was in my first year of college when I walked into my mother’s room while she was changing. We were a modest family so I had rarely seen her undressed, and I was horrified to see that one of her breasts was noticeably swollen and misshapen. She was freelance, had no health insurance, and would not get medical help because she was afraid of the bills. I was in ACT UP and I told her, “health care is a human right, fuck the bills,” but she had been raised in Kansas and she believed it was stealing not pay for something. By spring break of my second year, I got home and found her noticeably purplish and gasping for breath. My grandparents were visiting and my Dad was there, sitting around the dinner table acting like nothing was wrong. I insisted on taking her to the hospital where she was admitted and they did an extreme mastectomy, much like they did in history, before the newer, less devastating procedures were developed. They gave her Adriamycin, the “red devil,” hospitalizing her for three days each month but it damaged her heart. And radiation burned her skin, leaving her looking like she had been sleeping on a beach at noon for days. In the end, she died anyway. But her illness cracked open a family secret – my grandmother, it turned out, had been living with breast cancer for years at that point and my grandparents had not said a word. My grandmother was an early user of Tamoxifen, which was an experimental drug back then, and it prolonged her life so much that her oncologist wrote it up for a journal. She outlived my mother, but eventually the cancer showed up in her bones, and she died too. Both of my mother’s cousins had breast cancer, too. Marky, who I didn’t know well, died of hers, but Marybeth - the one most like me, who is now standing around with other old ladies with protest signs in Maryland – survived not only her first breast cancer, but a recurrence, and a whole new cancer in her other breast. Despite my Ashkenazi genes, I don’t have any of the known breast cancer genes, but there are clearly more genes to be discovered. While my mother was alive, she somehow came across this research registry collecting information on breast cancer families and she got everyone, including my cousin, grandmother and me to fill out forms, send in blood samples, and update them periodically. Years later, when they asked me for a tissue sample I went up to Columbia Presbyterian where they jabbed me with something that resembled a small apple corer to add to their bank of data and samples for use by researchers around the world. I don’t know if it was the pain or the memories, but when Alexis happened to call just as I was finishing up, I was so spaced out that she ordered me to come to her apartment in Harlem and to this day all I remember is sitting in her kitchen and petting Tazio’s soft grey fur while she cooked something. But today was good news, Dr Park decided it has been long enough since the surgery that I can be set free from the yearly surgeon visits and just do mammograms. One less doctor on the list is a welcome change.