Monday, January 17, 2011
Three weeks after the biopsy, I went to see the neurosurgeon assuming that the biopsy would not be in. The office had told me the previous Monday that John Hopkins had up to 10 more business days and the previous week had only had 3 since I had set the appointment. I went to the doctor only to get clearance to return to a job that I was missing, working with juvenile delinquents. I loved my work and wasn’t good at sitting around so it was time to get back.
I walked into the office and it was a solid two hours of waiting. This didn’t create any anxiety but in reality it was mostly a nuisance. People since then and after that have constantly asked how I was sleeping. The short version was that I was sleeping fine. In fact, I was annoyed at how much I was sleeping. The dilantin still had me sleeping far more than I liked and eating less and so had lost some weight due to that. My wife had also lost weight but hers wasn’t due to medication; frankly she didn’t have a lot to give. At some level, it makes lots of sense that she would have more worries than me. If anything happened to me, the burden would fall on her. However, not having more details from the biopsy result, I had let many worried be on standby for the time being.
Mostly, I was just ready to go back to work and had no other expectations for that appointment other than to be cleared. I would tell the doctor I’d gotten back to running, that I’d won an ultimate tournament and had immediately retired and that I had two more soccer games until I retired from that. However, when we finally did get in, the doctor said the biopsy had arrived and that he needed to look at it. This mild mannered neurosurgeon said with all the casualness in the world “Well, it came back as grade II…which… is worse than grade I… but not as bad as grade III.” Never in my life have I more badly wanted to say, “Well that’s not rocket science.” He also had added that it was an astrocytoma, a tumor that was star shaped but that in my research I would find out was really more like an octopus. The number of arms it had was not set but these ‘tentacles’ also weren’t in a clear pattern like a star fish. They thought it was going to be that type or another type (that I now don’t even remember the name of) which was self contained, no arms. So, out of the 4 possible scenarios, it had come back as the worst but the doctor still wanted to proceed cautiously. Had it been grade 1, the path would have been fairly clear, monitor it and do something if it grows. Had it been grade 3, the path would have also been fairly clear, do surgery because otherwise time was likely very limited. This grade 2 created some problems because the path was unclear on which one of those two roads was the better one. This doctor wanted to be cautious so he wanted to get some extra tests done, a full neuropsychological test, an angiogram, a follow-up MRI, and WADA testing. He also wanted me to have a follow up with my neurologist and meet an oncologist. I visualized a calendar that went from being filled with parties, ultimate tournaments etc to one filled with medical appointments. Mentally sighing, I resigned myself to that before we even made a decision, this was going to take some time. This hitchhiker was going to be along for a long ride with many time, money and emotional toll booths. I turned to my friend Will and said “Don’t get brain cancer, it’s a hassle.” He responded that he would keep that in mind.
Dr. Kim cleared me to go to work with only one restriction due to Texas State Law, no driving until 6 months time had passed. Due to having learned from a coworker’s problem with previously trying to come back from a medical procedure, I had called HR and read them the form and they said that would be enough. I knew this was probably coming and I had let my work know this restriction was probably coming. I went to work and turned in the form assuming/hoping that I would get back to my job. That assumption began what would turn into the worst part of the beginnings of this ride.