I had intended to write about speech and cognitive therapy as a follow-up to my post about physical and occupational therapy, a topic on which I have many thoughts, and some encouraging progress to report, but the last couple days have been pretty demoralizing, so more important to address that first.  I’ve already written about my efforts to steer clear of depression, despair, etc., and I note that anti-seizure drugs have been known to predispose patients to those sorts of issues.  I’m trying to get my head back to the “perfect sustained fury” that married men need when going into battle, according to Mark Helprin.  Speaking of “Fury”, I made the mistake of watching the Brad Pitt movie by the same name: generic, grisly, ghastly, and gross.  Not fit for any audience.  And, my little girls have recently discovered Harry Potter.  I’m really wishing they were watching something other than movies about orphans.  Course, what would that be?  Frozen?  No.  Despicable Me?  No.  Bambi?  No.  Cinderella? No.  Snow White?  No.  You get my point….

soloSo, besides some manageable but bad cinematic experiences what is casting a shadow?  The sequencing of my tumor came back, and although the news was mostly mixed and had no major surprises, it did require me and Jing to spend the morning reading papers about gliomas, a topic that I’ve been avoiding studiously.  I don’t think I have any problems looking this thing in the eye, but like Han Solo, I don’t especially enjoy people telling me the odds.  This is one of the reasons why our meetings with medical and radiation oncology were so unpleasant — the clinical detachment of oncologists, coupled with what I consider to be very low thresholds for declaring success.  I know that a handful of Survivors are following this blog, and I’m sure that you have all encountered this kind of unpleasantness.  Any thoughts on how to best put this stuff out of mind would be appreciated.  Before all this, I knew that I was mortal, and that it would all end someday, but like most people, it was easy to maintain a studied denial of the subject.  Reading papers about cancer genetics is awfully similar to my day job, and unfortunately, I have too good of an imagination to not internalize the grim statistics.  In the interest of staying angry and optimistic, I thought it would be worthwhile to publicly talk myself out of this funk.  First, I found a neat little paper that claims that a number of pre-treatment factors predict good prognosis for glioma patients.  Among these factors: (1) presence of seizures at diagnosis (very much YES), (2) KPS > 70 (this is a basic measure of how functional you are, and I’ll take the liberty of scoring myself a perfect 100), (3) treating institution (there’s none better than WashU), (4) absence of contrast enhancement on MRI (very much YES).  Second, the sequencing really didn’t tell us anything we didn’t already know: of course some bad genetic mistakes were made – I had a fucking brain tumor.  Really this news is redundant with what we learned on the worst day EVERThird, I’m going to be getting quarterly MRIs by people who know their business, so if this God damn thing regrows, we’ll know it early enough to take effective action.  Fourth, it’s in a spot where another surgery is possible, if necessary, so we have the option of resetting the clock even without radiation and chemo.  I survived one surgery, and rehab has gone very well so far, so as unpleasant as that option sounds, it’s on the table.  Fifth, there are some actionable chemo targets (e.g. IDH1) that came out of the sequencing information.  Sixth, we’re meeting with WashU’s glioma expert, Josh Rubin, next week, and we’re going to have some folks at Penn take a second look at the sequencing, so we have the very best minds working on how to beat this, should it require another fight.  Seventh, we have two intra-operative MRIs and one post-operative MRI showing that Dr. Chicoine got the whole thing.  That’s not quite the guarantee that I’d like to have, but in an uncertain world, I’m willing to take it.

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