So there I was minding my own business after having appointments with specialists in infectious disease and neurology Monday of last week, lots of lab drawn, an EEG and MR scan on Wednesday of this week and then “the phone call” came on Thursday. My neurologist (weird how that sounds to me) had seen the new MR scan, comparing it with the old one, and found a “new finding” this time in the L temporal lobe. Those that follow this remember that I have a “hole in my head”, actually an area of unexplained encephalomalacia about 3mm wide in my R temporal lobe. That finding is unchanged and stable, whatever the hell that means. No new holes this time around but there is “a subtle area of inflammation on the cortical surface of the L temporal lobe", the significance of which is cause a fare amount of debate in several departments at Penn.
The end result of all this is that I/we were asked to delay our return to Bots for another week to sort this out with a PET scan and an evaluation by a neuro-oncologist. The differential is tumor vs. infection vs. who-the-hell-knows. All are treatable and the anti-seizure meds are really making a noticeable difference. Both of those evals are on Monday of next week, then who knows…
This feels a little like what I often referred to with my patients as “specialist hell”. The risk of visiting a high powered place like Penn is that, while I have received nothing but very kind and solicitous care, I may get tested to a fare-thee-well only to find out what it ain’t or, worse, “could be” without any definitive sense of what this is or where it's headed. While I’m prepared for that I honestly never thought I’d find myself in this fix. I know, who does, right?
So I’m amused that I seem to be experiencing the classic and well defined grief reaction: denial, anger, bargaining, depression, and acceptance. And I’m slamming around between poles of these stages with a rapidity that is as annoying as it is fatiguing. The truth is that these episodes had been a relatively minor but persistent pain in the ass and had reached a place in my life where some answers were in order. But while the symptom complex is annoying, it’s largely unchanged from when it began just several weeks after leaving Sudan in '06. In any case, I’m assured by my neurologist (that term again) that whatever it is, it’s treatable.
I’d like to be less annoyed by it all and have truly been moved by the response of my kids and family. Time, I need some time to gain perspective. And I need to get back into the things I was doing and love, teaching medicine in a developing nation.
It has been other-worldly being introduced around Penn as a “faculty member”. While it carries nowhere near the same oomph as a bonafide member of the UPenn faculty, having that moniker associated with my name is kinda cool. I NEVER thought when I left Penn in 1980 I’d be back and working for/with them, both enjoying it and experiencing pride for doing it.
So I wait…... I have appts on Monday and then go from there. For now I have time to do things I’ve missed; get my iPod going, trick out my lap top, and load my PDA. Thanks for all the kind thoughts and support. Some of the thoughts I have in the black recesses of my brain don't warrant all the kindness. And I’ll take it as it makes a huge difference, so thanks, truly I’m blessed and very humbled….