Monday, November 17, 2008

Belated Two Month Status Report

Yesterday, we summarized some of the lessons we have extracted from our family’s medical adventure. It’s important to see this as a group experience, because while there was only one surgery, its effects on the rest of the family were significant in worry, time, exertion and in how it completely superseded other important matters in everyone’s lives. One of the blessings I count every day is how well we got through it together.

For me, I woke up this morning feeling unambitious. That’s an effect of my physical state, I’ve (very, very slowly) learned. For most of my life, waking up has meant reviewing my to-do list and getting to work. On good days, now, the same thing happens. If it doesn’t, one of the attributes of a tortoise or slow hare is to heed the signal and take things slowly. Originally, my first approach when that happened was to ignore it and push on, figuring it was an effect of shirking, or maybe depression. Since observation has shown that neither of those is really a reasonable assessment, and experimentation has shown that resting on those days actually leads to better results, that’s what I’m now (belatedly) learning to do. The good news, for me at least, is that yesterday, I woke up thinking about the book I have under contract and actually wrote a few pages. Teaching today and tomorrow will be my priority and take all available energy, and I’m hoping that the back of the week might be devoted to reviving the book project, getting reoriented with that and getting back to work on it. That prospect is a happy one to contemplate.

Kearney’s most recent post stimulated fascinating conversations about some of the perhaps unintended and unconsidered consequences of the evidence-based movement upon healing professions. That conversation needs to be continued, as I think it has implications worth examining. More on that later, I hope.

On the symptoms/after-effects front, here’s a top down assessment of where things stand two months after surgery (plus an extra week for being at capacity on the exact two-month anniversary).

Two months after surgery, my scalp still has an area the size of my hand that is numb and hyper-sensitive (yes, at the same time, and yes, I know that sounds contradictory). The incision is nearly impossible to find in some places (the majority of its length) and still pink and raised in four or five short segments of about an inch each. The major ridge by the original drill hole has vanished. I have two small, dime-to-nickel-sized bald spots that look to be permanent.

Fewer and farther between than even two weeks ago. Headaches are still always a sign of over-exertion, and one reason they are lessening is because, finally, I’m getting better at reading the signals and slowing down when fatigue is rising. See? Even old dogs can learn new tricks.

Another month of twice-a-week occupational therapy is coming up. While, generally, I’m rebuilding strength and the range of motion is vast compared to where I started, there are still times when the shoulder is weak and has small ranges in which motion is not under my control. At the limits of my range of motion, it’s painful. As recently as Friday, after a full few days, I couldn’t sustain writing on a blackboard.

Also improving and also still not fully reliable. Fatigue always impairs my balance, but there are also just times and days when it seems to diminish for reasons I cannot find. Still, most of the time, it's better than it has been.

Tingling in extremities
The pins-and-needles in my hand and foot are completely gone.

The Brain Tumor Diet
This turned out to be yet another fad diet. I’m back to day-of-surgery weight.

Improving every day, and still not anywhere near full strength. 80 percent, maybe? This week was better than last week and that was better than the week before. Improvements are not perceptible from day to day, but remarkable if we do weekly comparisons. I still have down days that feel like reversions, but the overall trend is positive.

Cognitive functioning
Frustrating and unpredictable. The gaps are intermittent and usually small. It’s still maddening. Mostly, it’s short-term memory and an inability to summon specific words. Other times, it feels like my brain has just turned off, and I’m in dense-mode. This, too, is far less frequent than before. This is my major opportunity to learn grace and to laugh at myself. I’m making some progress on that front, as some of the lapses really are funny and rolling with it is easier when seen that way. Even if I never get better from here, I can function at this level.

Family Stress
My family is remarkable and wonderful. I’m trying to get them to assess how their level of stress is these days. Last night, my balance was a little off and Shea automatically moved into a position to help stabilize me while we were climbing the stairs. I’m not sure this is something I would have had on my wish-list of things for her to learn, but between her natural observation skills self and her innate kindness, she’s picked it up. As I’ve recovered, she’s no longer angry with me, as she was in the beginning of this scary adventure.

So: while we never contemplated a brain tumor education or our excursion on the brain surgery conveyor belt, we did make our place on it as comfortable as possible and we all did it together. “We” in this case means our immediate family and it means all of you who have provided caring throughout this journey. We couldn’t have done it without you.

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