The surgeon had said that we would meet with his team the week after the biopsy. We thought that meant a meeting around a conference table with the surgeon, an oncologist, and a radiologist. Instead we were ushered into a typical patient examining room, with locked cabinets and a counter along one wall, a large examination chair taking up about a quarter of the room, and an upholstered stool on rollers for the doctor. At least there were three chairs for us to sit on, even if they were pushed together against the back wall. (Laura’s brother, Paul, was with us.)
First a nurse checked Laura’s blood pressure, looked at the discoloration in Laura’s arm from the IV port, and then told Laura she had GBM, glioblastoma multiforme. As if Laura and I knew what that meant. After a little wait, the oncologist came in. The surgeon told you? No. The oncologist was somewhere into laying it all out when the surgeon appeared. He blew off the issue of what he’d told us and whether he’d told Laura’s primary physician. He said that his role that morning was to examine Laura’s surgical wound. He looked. He told Laura to coat the area with Vaseline, and then to scrub off the sealer over the incision. The surgeon left.
The oncologist resumed. With GBM there is a 50% chance that treatment will have any impact on the tumor. Of those on whom treatment has an impact, only 25% may survive. I immediately calculated 12.5% in my head, but didn’t know enough yet to ask how long. Laura heard 50/50 and started crying. (I never told her about compound probabilities or survival times.) The oncologist explained that treatment would consist of six weeks of radiation plus chemo, five days a week; then five days of chemo a month indefinitely. (We paid more attention to that word “indefinitely” than to the probabilities.) Chemo would be a pill called Temodar. We talked a lot with the oncologist about alternatives closer to where we lived. We were upset, angry, and gave the oncologist a hard time about alternatives elsewhere. He finished, saying that the radiation oncologist would probably try to persuade us to stay with them.
Then we waited and waited and waited. I opened the door to make sure that they saw we were still waiting. A social worker came in to talk about support groups. We waited for the radiation oncologist for more than an hour, during which time we saw her going back and forth. The surgeon stopped and asked why we were still there. We told him and he said he would beat up the radiation oncologist. Still no action. We could hear them calling for a Mandarin-speaking translator. Despite frustration, anger, and fear, this period gave Laura, Paul, and me a chance to review the alternatives. The tipping point came when Laura vocalized what I had been thinking—a friend who was out of work could drive Laura back and forth to the city for treatment.
Finally, they sent in a resident for a different radiation oncologist. The first one was tied up and had asked the other one to step in. The resident evaluated Laura. She couldn’t remember the word “tip” of a pen. He asked her who was the Vice President of the United States. Laura answered quickly, “Dick Cheney.” The resident said anger brings those words back. We could laugh. Then we talked details of treatment, and signed a consent form. While the resident was out getting the radiation oncologist, someone named Heather came in to try to recruit Laura for a Phase I clinical trial. We took the materials and said that we would study them. Finally the other radiation oncologist entered, apologizing for his colleague, to whom Laura gave no slack. The radiation oncologist said that they would have someone call to make an appointment for a conforming CT scan the following week.
When we finally got out of the “meeting” with the “team,” we went to lunch at a diner kitty-corner from the clinic. Greek diner food, but no corned beef hash. I needed corned beef hash with eggs and lots of ketchup. I got scrambled eggs, fries, and lots of ketchup. Paul headed back to Baltimore. We never found an answer to his question about who was the alpha male on the team. Our bets were on the surgeon.