Wednesday, February 10, 2010

17-Month Status Report

Three things stand out, this far out from the surgical portion of this brain tumor adventure.

1. I’m surrounded by some of the most magnificent family members and friends anyone could ever ask for.
2. Things are improving, though infinitesimally slowly.
3. I’m a different person than I was before.

Physically, from the top down, the most acute portion is that I have some kind of floating chip loose in my scalp and an area that’s extremely sore when lying down. Interestingly, it’s not so apparent nor does it hurt so much (it's just tender) when vertical. In the areas where the scalp was peeled and then reattached, there is still that same old area, about the size of my palm, that’s strangely sensitive and numb at the same time. It’s hard to explain, and we were warned that the scalp would be the last to heal. I’m still waiting for that, as a sign of somethingorother. My skull is very bumpy, more so than was detectable when there was still minor swelling here and there. Still, it doesn't show and you have to be feeling for it to notice.

Connected to my head/brain, my balance is still bad, worse when tired, visually distracted or in loud places. The wonderful people around me do a constant dance, adapting to places that I’ll need stabilization or spotting. I’m not sure how much they notice it any more, but I notice it all the time. My family and the people who spend the most time with me automatically shift into place on stairs, on uneven terrain, and whenever I start to tilt. I’ve learned a lot about asking for help gracefully when out in the world and confronted with something I cannot navigate on my own. I’ve leaned on, held hands with and generally relied on people across campus and out in the world in ways I never would have imagined. Without exception, people are charming, kind and gracious. I hate needing the help, even as I’m grateful for it.

My energy has to be managed really carefully, something that is a daily struggle for me, as I haven’t yet succeeded in re-setting my internal reach/grasp reality meter. Still, over time, gradually, my energy levels are creeping up. One happy metric is that ten hours of sleep a night is not absolutely mandatory any more, and the point at which I completely hit the wall and run out of steam is drifting later and later in the evening. One of these days, maybe I'll be more like real grownup people again.

My shoulder and arm are better than they’ve been at any previous point. I can do most of what my left arm does with my right, though its range of motion is more limited (by a fair amount) and it still clicks, especially when coming down from above the shoulder. The shoulder itself remains tender and I cannot sleep on my right side. I do exercises sent home by the physical therapist in hopes of strengthening and improving the shoulder/arm. Every now and then, my hand goes completely numb. It's not always clear why.

I think that’s the physical inventory. Psychically, I’m simply a different person. That’s not bad or good, it’s just true. Cognitively, there are things I used to do and saw as integral to my Tina-ness that are gone. It’s an adjustment, and it’s hard, even as I count my blessings. This could have been so very much worse, so where I am is something to be grateful for. I am. I just also feel a low-level sense of loss most of the time. I am still not reliably reading for pleasure. Things I used to do without thought require huge quantities of time and planning, and they don’t turn out as well. I spend much (much, much) more of my time at home than ever before in order to be able to do any creative/high level thought at all, as I get completely fatigued in new or bustling places. I keep trying, and stretching, and I see some progress there. Very slow progress. Some forms of synthesis and creativity are notable in their absence. See remarks above about energy and relying on other people for some basic stuff. I’m calmer and more patient, which feels good and like an advance up the evolutionary scale. Juxtaposed with the losses, fundamentally I’m the same person: same sense of humor, same take on the world, same personality. Just less.

More and more, having had a major brain tumor is receding from centrality in my daily life. That’s a wonderful thing. I feel greedy to want it to recede some more, but there you have it: I do want that. Now, back to the backlog of stuff I cannot seem to slog through. One foot in front of the other…

The snow is still all white and pretty. There’s not much wind in town, so while the roads are evidently pretty bad, around our neighborhood, people are driving and walking and biking and it’s a picture-perfect snowy day. Lucky me, I’m going to Albuquerque on Friday. I’m looking forward to it, if only I can get some of the work done before then. Cheers to all.

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