September 22nd, 2008: My physical therapist came for a visit on Monday morning and he was appalled at how much my walking had regressed over the weekend. I explained that I thought it must be the tumor’s grown that was altering my body. Then, I called a cab and picked up Eileen Lemus on the way to my first visit ever to an oncologist. Dr. Hufford had been referred to my case when the tumor was initially spotted on the day of surgery. He had seen him the biopsy report, and I had no idea what he would recommend. But first, when I stepped into his office I noticed all the orchids growing on bookshelves, tables and plant stands. For several minutes, we took time out and talked about growing orchids and what wonderful, strange plants they were. Them, we got down to business. The first thing he told me was that I was in pain. This surprised me. I didn’t define my discomfort as pain. “Well,” he said, “when I watch you move, I see a body that is trying to avoid pain and is currently in pain.” We talked about the meds I was taking, and he said, “We can do better than that.” He wrote a prescription for Fentanyl patches: apply one to the skin every three days for basal pain management.
Next, he explained that my cancer, a sarcoma, was rare. In his practice, he treated people with breast, colon, lung and brain cancers. “What you need to do is find the best specialist to treat you.” As I tried to imagine tracking down a cancer guru, Eileen said, with total assurance, “I’ll get started on that.” Also, he emphasized that where ever I started treatment, it would be best to stay with that facility. In the larger Bay Area, my best choices were UCSF and Stanford, both big teaching hospitals with many authorities who studied esoteric illnesses. Finally, Dr. Hufford said that new scans were needed quickly to assess how the cancer had grown. Scan results would determine treatment. It was decided that I’d get the images taken at UCSF at Mission Bay. With a prescription for better pain medication, the assignment of finding a sarcoma specialist and a promised appointment for PET and CT scans, Eileen and I left the doctor’s office.
Shortly after I arrived home, my dear friend Wendy Ostrow came by for a visit. We hadn’t seen each other for several months, and the immediacy of relating the story of how the cancer was discovered up to the trip to the oncologist’s office a couple of hours earlier took precedence over family stories and general life news. Wendy’s medical background immediately kicked in. She went to my computer and started trolling through the UCSF web site for oncologists with a sarcoma specialty. Also, Wendy promised to email her brother David, who lives in Chicago but knows many of the UCSF faculty members after working in the AIDS epidemic for the past three decades.