Update from the woman with a hole in her head

In the few minutes of evening time I have available to me before my energy level completely disappears, I wanted to share a bit with you all about how I'm going.  The answer is, really, really well, as it turns out.

Biffle blogged a lot about the surgery process itself—the seizure that led into the surgery and the later one that meant they needed to call the surgery quits, how very sleepy I was in the days following. I was supposed to be able to remember the surgery itself quite clearly—Friedman and Joel Barton* both said so, but it may have been the seizures that somehow interfered in that process. I do remember bits of the surgery, with Friedman's physician's assistant and Joel Barton peering at me through a blue surgical tent, the PA showing me children’s playing cards and getting me to identify various pictures (bunnies, cats, whatever), but I don’t remember actually making small talk. In fact, what I remember most is being fairly uncomfortable (Joel said this would be the case) and continuing to try to fade out, with the PA aggressively trying to get me to stay conscious. Was this seizures or a result of them having had to give me more relaxing drugs or something? Who knows. At any rate, I wasn’t the cool patient reading Vonnegut in the surgery, and I don’t remember making any fun quips or anything. I do remember having the thought that Joel was wrong about imagining the blue fabric as like a childhood pillow fort—it was pretty clear that we were in a surgical setting, and I was okay with that fact.

After the surgery, I went straight to the ICU and I guess was fairly well out of it for several hours. According to Biffle, this was a time period that Friedman and Uncle Joe were both giving sort of scrutinous-eyed assessments of me—not saying, “Oh, this is terrible,” but obviously waiting to see what the story was.

And then I woke up, and kept waking up, and kept doing really well with the whole language game. We’re a week and two days past the surgery, and as far as I can tell I’m having very few language problems of any sort.  This seems not to be what any of them expected--certainly not two of the finest neurosurgeons in the country, one of whom operated on my brain, and one of whom is my uncle.**

Friedman took between 60-70% of the tumor out. Uncle Joe pointed out that the tumor they removed was mostly solid tissue; the stuff that they left in was where the tumor cells were fully infiltrating my functional brain cells, and as they got to the end of the solid tumor tissue, I started having seizures, and that’s where they stopped. The pathology report from Duke—one of the best pathology centers in the country, according to Joe—confirms that the tumor is all slow growing, level two, so that’s very good news. In six weeks I’ll go to see Friedman again, and we’ll confirm this whole follow-up process of care I’m going to need to keep having done.

Uncle Joe says to think of it as a “curative process,” and I’m happy to do that. I know I was pretty fixated on my own mortality in the days preceeding this process, but in the days since I’ve been really grateful to still be alive, and grateful that there’s not a lot I’m having to work on right now beyond resting, getting a little exercise, and spending time (for the most part animated, but otherwise quite low-key) with Maybelle. It’ll be interesting to see how my experience of this process changes. I know that being the sick one this time through was easier for me than it’s been for Biffle, and for my whole family; they all basically hung out in the hospital all day, except for coming to see me from time to time in my room. I was so sleepy, and have continued to be recovering, on various drugs, not necessarily in my fully right mind all the time. Meanwhile, Biffle has been anxious anxious anxious, and I know the rest of my family feels the same.  Now that we've been home for a few days, Biffle and my mom are trying to establish some sort of routine.

And I guess I should be honest here and say the same:  although I'm grateful not to have any major tasks ahead of me other than healing, I have to admit that I find the lack of a solid work routine very jarring.  Not to mention that the complete exhaustion remains a bit of an enigma for me.  Biffle has a new standardized facial expression he makes when I ask--again and again, apparently--"Why am I so tired?"  His appearance is clear enough that he no longer has to answer, "Because you had brain surgery nine days ago."  Ah, yes.  That.

*My anesthesiologist—the one who read the blog before he met me, made reference to Baxter Sez and third wave feminism, and just yesterday has made a comment on the blog! Go, Joel!
**While I was recovering from surgery, Friedman moved from being Dr. Mo Mo to being actual Friedman on this blog, which I find a little sad, but what can you do.  The identity of my uncle, however, is still somewhat hidden.  Let me assure you, though, that he's one of the best in the country.  One. Of. The. Best.  That's all I'm saying.