I feel like the past three and a half years have been rehearsal, and it's time for the big show. I will do the steps I have learned, and the result could be glory or disaster.
I made a big bet on this new treatment. When I didn't fit the profile, I asked the researcher to change the parameters so that I could participate. He did, but that required a lot of committee approvals and caused a long delay. It has now been ten months since I first spoke to the researcher about this trial. During that time, I avoided treatments that would disqualify from the trial, even though those routine treatments almost definitely would have controlled my cancer during that year. Instead, my cancer grew 3,000% and is now causing more pain than ever before. I now use a cane to stand and can't even roll over in bed without grimacing.
Today, I will get a Hickman catheter installed in my chest. Friday through Wednesday, I will receive chemo and lose my hair. Thursday, I will receive full body radiation, and the next day, I receive a bone marrow transplant. If all goes well, three months later, I start Bipolar Androgen Therapy (BAT). The first trial subject did well and his PSA is already going down. I am the second trial subject and the first with an unrelated donor.
My wife's aunt will take me to the hospital almost every day for the next month or two. We will spend a lot of time reading books while waiting for test results or waiting for the latest bag of liquid to infuse into me.
Ideally, I will have symptoms of a little bit of Graft Versus Host Disease (GVHD), but not too much. Thinking about the full process can be overwhelming. I find it helpful to just concentrate on today and think of this treatment not as a task, but as a new lifestyle, because it will be, for about 100 days.