Due to my pushiness, results came in fast for all of these procedures. The doctors ended up split on their decision: 5 doctors said that I should do the surgery; 3 said I should monitor it and do the surgery if/when it grows.
The neuropsychological report stated that I was in the superior intellectual capacity (that’s not relevant to any of the diagnosis but I thought you should know). It also stated that the results seemed to indicate that I likely already had decrease in memory; however it also stated that I was in the 91% percentile of memory so that suggested I had room to spare.
Both of the neurosurgeons weighed in and said that it looked far enough away from my language areas (apparently there are 2) where if the surgery went as it was supposed, there would likely be none or only a minor deficit. The biggest risk was to short term and episodic memory (one said 10 to 20%, the other said about 15%, in my mind they were saying the same thing; episodic memory is remembering events). However, the doctor from Duke, the neurosurgeon who did Ted Kennedy’s surgery said something that was very interesting. He said that some of that memory may already be gone and I may have already adjusted accordingly. This was, in its own way, good news because if it was already gone, well if it was already missing now, I wouldn’t miss it. My wife took this as vindication that all those times we’d argued about whether or not I’d forgotten something, this news proved she was right…at least that’s what I think I remember her saying.
The other thing that was interesting was that the neuropsychological report stated that it appeared my self perception was inaccurate: “utilization of denial as a psychological defense against anxiety.” I was amused that a guy who would blog about all this (and beyond that let people read a lot of a very private and not always complimentary reports), who would move all his appointments up and who would create his own medical team not just the ones recommended to him by others would be considered in denial but fair enough.
The doctor from Duke said that he thought he was probably buying me 10 years but that didn’t mean I wouldn’t be dead a year after the surgery or live twenty years after it. He thought we should do the surgery and that we should do it in the next 2 to 3 weeks. I told him I hadn’t decided whether or not to pursue that route but that I had a marathon in 5 weeks and if I did surgery, we would do it after that. He grew on me a lot that day when he answered: “That increases your chances of having a seizure because of dehydration and exhaustion but I still think you should do it. Those type of things are important” He was clearly a doctor who understood that life was about more than just breathing, my kind of guy. I told him I was going to take the weekend to talk to my wife and friends and we’d decide which way to go and I’d get back to him after that.
So now I had all the information… by coincidence it was a 3 day weekend coming up. Which gamble to take? The gamble of brain surgery of the gamble of letting it sit in your head while doing nothing. Chemotherapy and radiation were not pre-surgery options. There didn’t really seem to be a way to win since surgery would be a “60 to 80% reduction at best” so I wasn’t coming out cancer free. This was an all-in move, a big wager that I was going to have to bet my life or much of it on? How does one make a decision like that?