“It’s stage four,” I told my mother. “The bone biopsy showed that the cancer has spread. It’s in my lower spine.” The diagnosis seemed to drop from the sky, rain clouds turned to lead, crashing down on us. We hugged, crying, my tiny mother, her tall daughter. One wet, raincoated shape as we held one another, our umbrellas forgotten.
“Take three deep breaths,” I finally managed to say to her. We tried. But as we inhaled, suddenly both of us began laughing, uncontrolled belly laughs, despite — and in defiance of — the damp death sentence that had just fallen from the sky.
That was more than 18 months ago. Now, the medical countdown toward the end of my life continues. And I’ve done a lot of thinking about how best to live the limited time I have left.
I had felt fine. But a small, red, rough-textured spot (not a lump) about the size of a pea had appeared on my right breast. I was educated as a registered nurse, led quality-improvement efforts as a health-care administrator and now am at a foundation focused on improving the health of our nation’s older adults. But even without that background, I’d have known something was wrong. Anyone would.
My primary-care physician quickly arranged for me to have scans and a biopsy at a local hospital. Both of us were aware that the red spot might be cancerous.
The night before my hospital appointment, I was wide awake, reading. Breast cancer, in general, has a five-year survival rate nearing 90 percent. But inflammatory breast cancer, which I suspected the spot might be, is different. It’s an especially aggressive form of cancer where the breast itself eventually can become red and swollen, and even develop a diseased open wound. But most frightening is that it tends to spread to other parts of the body. Of those who receive diagnoses of inflammatory breast cancer, at which point it’s usually stage III or IV, only 40 percent live to five years.
That night my research revealed that despite all the funding going toward curing breast cancer, what seemed an insignificant amount goes toward finding a cure for inflammatory breast cancer. The next morning, before most people had had their first cup of coffee, I was in the hospital, watching as a radiologist extracted “core samples” of my breast tissue. In a clear, informational way, she explained what she was doing and what she was seeing. She noted eventually that the samples appeared to be malignant. I appreciated her honesty.
When the biopsy results were back, I met with an oncologist in New York, where I work. After she gave me a physical exam, we sat quietly in her office, lined with its reassuring books and diplomas. She looked me in the eye and in a soft voice told me the diagnosis: inflammatory breast cancer. Hearing it said out loud was almost anticlimactic. I’d thought so. And the radiologist who had taken the biopsy had gently helped prepare me for the news.