March 16, 2017
Is you is or is you ain’t my cancer? I was in a funk about what to do about a possible cancer diagnosis until Beethoven came to the rescue.
I recently learned I had ductal carcinoma in situ, or D.C.I.S., a hotly contested condition that some doctors consider an early breast cancer and others say is not really cancer at all. The condition means that abnormal cells have been found in the milk ducts of the breast.
Debate continues to swirl around what to do about D.C.I.S. Some specialists, labeling it “Stage 0 cancer,” counsel quick intervention, saying the abnormal cells might turn into cancer. Others argue that aggressive treatment does not extend survival, so why undergo surgery or radiation?
Like most patients, I was offered a map of options: 1) watch and wait, 2) watch and wait with an aromatase inhibitor, 3) a lumpectomy, 4) a lumpectomy with radiation, 5) a mastectomy, or 6) a double prophylactic mastectomy. This last protocol was mentioned because I have inherited a mutation in the BRCA gene, which increases the risk of breast and ovarian cancers. It may have been why I developed the ovarian cancer that was diagnosed in 2008.
Living with Stage 3 ovarian cancer, I am all too aware that advanced forms of cancer recur, and I at first gravitated toward the most extreme course of action. Why give D.C.I.S. a chance to spread? If I had a double mastectomy, I would never again have to be tormented by mammograms or breast biopsies or (worst of all) fears of metastatic breast cancer. At the age of 72, reconstruction did not seem to make sense. With a double mastectomy, I would not be lopsided. Why not take the plunge?
On the phone, I put the question to my beloved first oncologist, Dr. Daniela Matei. She tactfully said, “Yes, if you were a healthy 50-year-old, that path would make sense. But even a single mastectomy will be a challenge for you.” Age and illness make a difference. Seven years of surgeries, chemotherapies and a clinical trial drug have considerably weakened my body.
Being a person of extreme moods, I then leapfrogged to the least grueling track. Why not watch and wait, maybe with some drugs? Dr. Matei mentioned the BRCA mutation that multiplies my chances of metastases and my anxieties about them. What a difference genetics makes. “Maybe have the lumpectomy?” she proposed.
Instantly, I was brought up short by the word “lumpectomy,” which sounded worse to my ears than lobotomy. “Lump of sugar,” an email pal wrote, trying to be encouraging. But we agreed that the word conjures bad associations. Lump it or leave it. Don’t sit there like a lump. She’s taken her lumps. The lumpen proletariat. Heffalumps. Besides, there was no palpable lump in my breast.
A rose by any other name, I thought as I scheduled an appointment with a surgeon. But I still had to consider the radiation road, and radiation is no bed of roses. A woman in my support group, who also has the BRCA mutation, developed skin lesions after a lumpectomy and radiation. For three years, oozing blisters called lichen sclerosus plagued her. She had to undergo a double mastectomy along with skin grafts. Given her experience, I wanted to forgo radiation, if I could do so safely.
While I was pondering this bewildering labyrinth, my friend Evelyne invited me to her studio to hear her run through Beethoven’s Waldstein piano sonata for a future performance. She had had a mastectomy only a month earlier. She positioned me in a chair from which I could see her hands on the keyboard of a grand piano and launched into the percussive opening.
A succession of anxious and quickly repeated chords spoke to my confusion, but then came a poignant lyrical refrain. It seemed to be saying tentatively and then more persistently: “I do believe you. Do you believe me?” With the right hand, later with the left, and then with both, it asks, “Do you believe me?” Throughout the first movement, the answer remains steady: “I do believe you.”
Tearing up, I realized that I had to believe that I was doing the best I could, for surely Evelyne — her fingers flying with electrifying power but also enchanting delicacy — was demonstrating that life with its passion and beauty goes on. Mastectomy and all, she was making life with its passion and beauty go on.
In facing the alternatives given women with this diagnosis, I have learned how very idiosyncratic our decisions must be. We need to honor our own and other people’s choices, whatever they are. Some will think I am doing too much (a lumpectomy), some too little (no radiation), but each must find her own way.
To those finding their way through the maze of decisions that cancer presents, my advice is to listen to music you love, whether it is the Waldstein sonata or Louis Jordan’s “Is You Is or Is You Ain’t My Baby?” or something else that speaks to you. It will not offer answers, but its joys may transport you from confusion to confirmation that your ongoing, eccentric character still plays a role.
I am delighted that my surgeon’s last name is Ludwig.