2.21.2010

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.

17 comments:

sarah said...

So glad to see you doing so well so fast!! (May I say I told you so?) we've been following along and cheering for you guys -- keep resting and getting better!

Bryan said...

Hoorah for speedy recovery!

Christie said...

Nice to see loads of language from your virtual pen!

Okay - just for reference - even mundane major surgeries lead to medical leave of 6 weeks or more.

Just sayin.

Deandra said...

Though I'm glad to see that the surgery did not affect the part of your brain that doesn't recognize "rest" or "take it easy" as viable word choices, I think in this case, I'm going to channel Walter's facial expression on this one.

Recuperating from brain surgery = free pass to allow yourself to sleep as much as your body needs to. :-)

It's so wonderful to read how well you are doing so quickly after the surgery (not that I doubted your ability to pull through it in this way).

Julie said...

I'm so happy to see the language part of your brain in action! I think your extra-large brain obviously does not miss that little bit that was removed.
Keep on healing and taking your vitamin c!

Grace said...

Alison, I am so glad to hear that you are doing so well. You have been in my thoughts for the last several weeks and I am so relieved... Take care of yourself! You are a trooper :)

Tawanda Bee said...

I find amusement in the title "woman with a hole in her head." I know sometimes I feel like there is a hole in my head and all of my rational thoughts seep out before I can latch on to them. This is obviously not a problem for you today even with a hole in your head, and I am grateful.
Started to type that smiley face thing but decided to use words instead... I AM SMILING. I AM HAPPY to read your post.
Loving you with a big ole' hug.
Deborah

Elizabeth said...

I am glad that you are doing so well, but for some reason, I knew that you would. Take it easy. Rest is good.

Anonymous said...

You used the words "curative" and "scrutinous" nine days after brain surgery. Not bad at all, Piepmeier.

Brian McGee

KMB said...

As the nurses and PT people kept telling me: remember it's a marathon, not a sprint! I got really irritated with that fast, because I wanted to be better yesterday, not plodding around the house waiting for my next scheduled nap. So I totally empathize! But remember, it was brain surgery (easy to forget, eh?). If you can, try not to rush through your recovery just to get to the next thing--you deserve to spend time on yourself and your family. You earned it!

Kris

PS, here's your penguin joke for Tuesday:

What's black & white, black & white, black & white, and black & white?

A penguin rolling down the hill!

Kenneth said...

I'm so glad and relieved that you're doing well. Much love.

crowlk said...

so you've defied brain surgery recovery odds thus proving that your brain IS better than other brains which we knew all along. it's pretty cute they let you look at baby animal cards. i hope inky was on one of them. xo,k

Martha McCaughey said...

Oh, geez- where to begin. Alison, I just learned of this after getting an auto-reply to the email I sent you and then investigating on your website and then your blog. I have just cried a river thinking you had to go through this, but am also smiling at your characteristically brilliant and funny use of words here. What a trooper you are (and you, too, Walter and Maybelle)! You are such a strong person in so many ways. I admire you so. I am so glad you are recovering so well. big hug- Martha McC.

Deborah Siegel said...

Alison, I've been following your and Biffle's updates and I am so happy to see you back here! Elline posted a lovely review of Girl Zines on Girl w/Pen today: http://girlwpen.com/?p=1842

We thought it would be a fun "welcome back"!!!

Rest up, hugs to Maybelle from all of us, just be, and be well. xo Deborah

slwscout said...

Alison and Walter,
I'm thrilled such progress is being made. I love the marathon comment that someone posted. It is definitely to time to stop and smell the roses and enjoy the smiles of your Maybelle.

Walter, having been the spouse of someone in the neuro-unit (albeit briefly and significantly less seriously), I am sending you strength, patience, and anti-anxiety vibes. Often, the patient can't remember the most stressful times and can't see the post-surgery coloring on themselves. The spouse has photographic memories.

I'm thrilled you both have strong support.

Smiles and hugs,
Sara

Anonymous said...

OK, so I've got to see Maybelle again! Can I, Can I, please!

After my surgery, the best comment I got was "you only get one chance to heal." Seriously, if you screw it up life gets much harder, you have to rest much longer, and we have to worry much more deeply! Think of what Biffle's face will look like then!

Peace to you all! Let me know if you need dinner!

Deb McGee

Pam said...

I haven't stopped by here in a long while, and love to visit and see photos of Maybelle - and here I find a video of a woman with a hole in her head! I've read back aways, since Christmas Day - and all I can say is - wow. Lots of action around these parts. I'm so glad that surgery went well - and I'm so glad that you are healing and getting back to some normal activities. Like a whole bunch of people, I'm sending positive thoughts your way - take good care of yourself, okay? All of you.