Saturday, February 28, 2009
In the particular trial that I am in, you get randomized to either the surgery or chemo (best alternative care). They do this literally like a flip of the computerized coin to ensure that the data is not taited in bringing an experimental drug or procedure before the FDA for approval. My trial is an experimental surgery, more on that later. I wanted the surgery, I thought, but i had just had 2 surgeries to remove my right eye and residual tumors 3 weeks earlier and was already tired of the experience. My coin flip gave me chemo treatments to start, Temodar, 5 days of pills. I went through 2 cycles and that was enough! Sick to my stomach all day, but no hair loss. I went back to NIH/NCI for my 30 day tests in December, 7 days removed from chemo and 4 days before a Christmas skiing trip scheduled 5 months before. It was also the first trip that I went without Terri, we had decided that she would stay home with the kids and get us ready for our skiing trip, it is usually a 3 day round trip to NIH. I had expected to get the test/scan results from Dr. Hughes as before, "liver is getting a little worse, so let's get this surgery scheduled" kind of thing. When she walked in the exam room with the other interns I knew something was up.....drum roll.....cancer has spread to my brain, the cerebellum to be exact, that part of the brain that controls motor skills and balance, kinda of important! I was numb and alone, or was I? I immediately called Terri to break the news. It is what it is, I have begun to say. The discovery caused pause for the liver surgery, as the brain became the priority. The plan was to explore surgery options but wait another 30 days to get a another set of test/scans done so as to chart this tumors growth. Colorado would be coming just in time! Christmas was indeed special this year. In January, I returned with Terri, for the monthly tests/scans with great anticipation. The tumor was again confirmed but had grown, that brought in the radiation oncology folks headed by Dr. Kevin Camphausen. The plans was for us to return in 3 days and have Stereotatic Radiation brain surgery. This is where the screw the halo to my skull ( I posted a pic on facebook) and yes it hurt, after they attached the halo they bolt the halo with me attached to the table for a scan then have a physicist program the computers for the procedure, about a 6 hour ordeal. That was just done on February 2, I still have indentions! I am leaving for NIH/NCI the first week of March looking for the tests to confirm a surgery success.