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Wednesday, May 6

A consultation with my next step toward the exit door

Well I met with Dr. Voloschin, the Emory Neuro Oncologist, for the first time yesterday. After a brief introduction to his PA and nurse (which consisted of the one hundred twenty-seventh neuro-functionality test that I've been administered since Goliath popped up). They were both really humane, which has been an extremely rare trait to encounter on this little journey, but the PA was the nicest one of all (I secretly wish that she was the doctor instead of Dr. Voloschin, but don't tell him that). As I've noted before in this little blog, these consultations typically scare the crap out of me, but I think as the weeks and months progress, I'm getting better prepared to handle them. I wasn't nearly as anxious this time, and I wasn't riddled with fear and general anguish afterward either. That's progress, right?

So the doc's prognosis is that since the most recent scientific medical data that we have is based entirely on stage IV tumors, he can't, in all good judgement, really recommend whether I should do the chemo or not. So basically, it's up to me to make that decision. Now I know this is a nail-biting cliffhanger at this point, so I'll just tell you that I have absolutely no desire to do chemo right now. That doesn't mean that I'll never have to do it though. So I'm left with this little peep of a voice in the back of my head quietly murmuring to me that I may one day regret avoiding the chemo, but I just don't like the looks of it right now. I'd really like to be able to return to some semblance of a normal life in the near future. Maybe that's not an advisable way to go about this, but I feel like I've literally ate, drank and slept this thing since the end of December and, dammit, I'd really like to have a life again. Maybe that's too much to ask, but I'm growing tired of being stuck in limbo in suburban Atlanta. Yet I know I have to make the best of a situation that I didn't ask for or deserve in the first place, so maybe I need to pay more attention to that rather than focusing on all the negative aspects of my situation.

Now my only problem is deciding when to start the radiation which, surprise surprise, I'm not too happy about. Any form of radiation carries with it the cumbersome weight of late effects (i.e. permanent changes in the brain as a result of dangerously high levels of radiation demolishing perfectly healthy cells). These can come about anywhere from months to years after the radiation ends. There's no way to know when and the degree to which it will happen to me, but some degree of it will happen nonetheless. Needless to say, I'm not looking forward to this joyful process. My only other option, then, is to do nothing at the moment and wait and see what happens (not advisable albeit strangely appealing) or to find other clinical trials that i may not be aware of. So I'm opting for the clinical trial investigations. It may turn up nothing, but if so, then I always have my beatific radiation bed kept warm for me by the hospital (that and the dangerously high amount of radiation regularly emanating from it).