Sorry for the delay in updating (you’re about to see why), so I’ll start with the results:
• The surgery went PERFECTLY! The visible tumor mass we saw on my MRI a month ago had not grown much at all, and it was eminently accessible and removable. So my eminent surgeon and good friend Chirag Patil, MD, accessed it and removed the shit out of it.
• Post-Op MRI showed complete resection, and no surprises, of the good or bad kind. It was run-of-the-mill as expected. The weird stuff only started later. (I will get to this in a bit. Don’t worry. I’m fine. Ish.)
• I got the clinical trial (the Uncommon Cold), which is hopefully already doing something uncommonly awesome. It is important to understand (and accept) that we will never really know for sure if it does anything. But hopefuly it will. We’ll only know for sure once 1,000 people have gotten it, and have all shown serious positive results. This is what clinical trials are for. I’m very happy (and lucky) to be a part of this one. Not only for contributing to my health (which is vaguely important to me), but also to the success of future patients with glioblastoma.
SO HERE’S WHAT HAPPENED, LAST THURSDAY!
I had brain surgery. My fourth. No big deal. I also ran there again (and filmed it!), but that’s a whole other story, which I will post about later today.
So I had brain surgery, number 4, and then I woke up around 3PM, in the O.R. Feeling not bad at all. Pretty good actually. Happy, as usual, to be alive. (And I am decidedly not faking that.)
Then I dozed off a couple of times. Various beautiful friends popped in and said hello during moments of eye-openness.
Then I dozed more. Then I woke up, around 7PM, withThe Most Excruciating Headache Of My Entire Life (TMEHOMEL), or even conceive of to curse upon your most wicked and wretchedly deserving enemy. (Hopefully not just the dick at 7-11 who didn’t say thanks when you held the door for him, because that would be mean.)
This headache was BAD. And I’ve had headaches:
• I had a brain tumor the size of an orange. Or a small mango, depending on your fruit preference. THAT is a headache.
• I ran face-first into a tree in the middle of the woods a couple weeks ago (I didn’t fall, but there was a sound. And it fucking hurt. But it was mostly funny. And no it was not because I have brain cancer, I was just looking at something, not that tree.)
• I’ve drank like an (insert non-Irish racist alcoholic person word here, because hey– everybody gets it, give them a break). Those are headaches. You know what those feel like.
This was much worse than any of those headaches.
Much, much worse.
And it continued for the next 15 hours.
And that really sucked.
Now, we don’t really know the reason for this headache. I mean yeah, I did just have my skull physically sawed open, so that would seem like a clue, but I’ve done that three other times and it never felt like this. Never anything like this.
Now, before I scare you off of future brain surgeries you might be considering, let’s remember something important: I AM THE FIRST HUMAN BEING TO EVER GET A GENETICALLY MODIFIED COLD VIRUS INJECTED DIRECTLY INTO HIS BRAIN.
So that’s probably what it was. But we don’t know, and we’ll never know for sure (until, at least, the same thing happens to a thousand people). And this Ultimate Headache Of Death could actually be a good sign: it could mean the virus is doing what it’s supposed to, which is to get my immune system all pissed off & ready to eat stuff. Like brain cancer.
It could be doing that right now, in fact. Because the headache is still going. Six days later. Ouch x 1,000. I have been able to manage it with steroids & pain killers though, so I am doing OK at the moment. And it’s worth it.)
Is it really worth it? You bet your hurty brain it is. Because it helps people down the road from me, and maybe it helps me too. And The Most Excruciating Headache Of A Lifetime (TMEHOALT) is worth it if you’re dealing with what I’m dealing with.
Because there’s not much else out there to deal with what I’m dealing with.
So I’m dealin’!
End note: on my way to brain surgery, that very same day, I did something I’m so terrible excited about and can’t wait to tell you that I’m gonna take a breath (and maybe a Tylenol) and write about it in a separate post, to follow.