Friday, July 10, 2009

Ten Month Status Report

The craniotomy was ten months ago today.

Who’d ever imagine writing a sentence like that? None of us, certainly, least of all me. The one recurring thought through all of this adventure has been “who gets a brain tumor, anyway?” By this curve in the road, the question about what stimulates the growth of these things has become interesting, which means there’s time and energy to ponder more than just putting one foot in front of the other. In and of itself, that's huge progress.

Ten months out, it feels like the recovery is maybe 90-95% complete. Will the rest ever come? We still hope. Externally, the incision is completely healed, and even the bits that were lagging have now completely vanished, and haven’t left much more than a minor trail behind. The one troublesome spot where we think some of the skin got turned a bit so the hair was ingrown (or some such equivalent) seems to have sorted all its issues out, and is barely perceptible by touch. My skull is uneven and bumpy, and all the swelling seems to have receded. It’s possible to detect the piece of the skull that was removed and reinserted around most of its perimeter. My scalp still has places with odd sensations. The very first day, in describing what was to come, the surgeon warned us that the scalp stuff would be “the last to heal.” These places are smaller than they were before, though, and the combination of hyper-sensitivity and numbness has notched down several more levels. They’re now maybe the size of half my palm--a big reduction from even two months ago.

As has been mentioned here fairly often, I still have stamina, balance, cognitive and confidence “issues.” I need nine solid hours of sleep at night and often nap on weekends to catch up a bit more. Going up stairs works just fine, but going down is still a most uncertain affair for me in almost all circumstances. I can do familiar stairs with just a handrail, but the slightest unevenness or unfamiliarity calls for a handrail and, in preference, a person walking just before me on whose shoulder I can rest my other hand. This has been especially evident in our touring of medieval buildings.

I can do almost all that I want intellectually, though not quite. I search for words more than advancing age seems to explain, and have odd gaps in the ability to make connections. Following a written narrative is still beyond me most of the time. This is like a flickering light: it comes and goes. When it is at full strength, I can read, comprehend and retain just about anything. These times are fleeting and unpredictable. They tend to last for a day or two, and then wane again. At the worst of times, I cannot decode the comics or follow a written story. At those times, it’s occasionally still possible to follow an audiobook, though mostly not. In between, it varies. Overall, this is improving, though so slowly progress is imperceptible on a daily basis. Measured by the month, the improvement is slow and steady. Here’s the great news: This provides me with another venue for practicing my graceful patience.

I continue to be on artificial cortisol and we will not know until late in August whether my system has been sufficiently jump-started to produce it on its own, or whether this is more likely a longer-term condition. The prednisone makes all the difference in the world, and I’ve adjusted pretty well to waking up to take it at 5 and then go back to sleep for a while. As recently as a few weeks ago, going without a dosage (I forgot it when I packed for my final trip before coming here) threw me out of whack for days. I’m not too anxious to repeat that experiment. On the consistent low dose, my energy levels are reasonably high and consistent.

The contrast between this summer and last is stark: my mood, outlook and general state of being is strong and happy. Last summer was grim, though none of us knew why. So that’s an enormous gain and we’re counting our blessings.

At the same time, I’m overall much more tentative than I’ve ever been or felt in my whole life. It’s an odd sensation and I’m hoping to glean insights from it and meld the useful bits into what could again one day be a complete and whole “me.” On the other hand, the realist says that might never occur: this might be as good as it gets. If so, that’s OK. Everything about where things now can be worked with, around, etc. Compensating for the remaining shortcomings at this plateau is completely possible, though not always comfortable. We’ll find out in time--sometime in the next year--if this is as good as it gets, or if there’s another set of gains still to be had. To be here, given the original possibilities of serious brain damage (or worse), is a gift, and we’re treasuring it.

The physical therapy for my shoulder continues, and it, too progresses slowly. I let up on the daily exercises during our journey here and our weekend adventure, which was a mistake, though an understandable one, and one I’ll likely make again. I’ve lost some ground in flexibility and comfort, and have now gone back to the exercises, doing some of them twice a day, as prescribed. I have a good range of motion forward, with limits to the side, up, and, especially, behind. My frozen shoulder still takes odd detours in certain planes, as some combination of the muscles, nerves and shoulder blade opt out of their share. Again, though, there is discernible progress over the eight-month report, and probably over a month ago, too.

Thus, overall, we count our blessings. It wouldn’t have been too long ago that my diagnosis would have had a much grimmer outcome than the almost-full restoration to “regular” life I now enjoy. I can work and travel and am blessed with am amazingly wonderful array of family and friends who have provided love, friendship and sustenance throughout this strange adventure.

Thank you, one and all.

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