Thursday, February 25, 2010

Almost Normal

The cortisol level this week is at a new high: 17.7. This is a big advance, and the highest measurement since this whole adrenal shutdown problem was first diagnosed, when it tested at 3. Since the “normal” range for morning cortisol is 18-24, it looks like the most recent weaning off the steroids worked and I’m going to be able to do without supplementation in the long run. It’s great news.

Today looks altogether brighter than yesterday and with new ideas and resolve, I’m trying again to tackle the challenges this semester presents.

Wednesday, February 24, 2010

Grey Day and Thoughts

It’s snowing this morning here in central illinois, and while it’s not the prettiest snow shower, it’s still nice to watch from inside. My favorite snowfall is when the flakes are big and fat and there’s no wind, so they just come straight down, quietly, and transform the world. These flakes are small and there’s some wind driving them, so they seem, well, not angry like in a blizzard, but sort of hyped up, like there’s a deadline and they’re running late and so they have to rush and aren’t doing it very efficiently. They’re not frantic, but they’re also not very organized or determined about getting where they’re going. Is there some psychological condition where you anthropomorphize weather? If so, there are some indications today that I might have it.

This patch of time isn’t going very well. I’m really struggling with the new class I’m teaching, and I don’t know why, so it’s consuming time and attention wholesale. Whatever the reason--which remains mysterious to me--I’m not connecting with the class where they are. My theory of teaching is that you meet the students wherever they are and hope to move them along to a new place. Since I haven’t found these kids where they are, my grand scheme to get them someplace else, as you might imagine, isn’t going very well. The frustrating part is that I’m not really sure--still-what’s wrong.

Every group has its own culture and chemistry, and one of my strong points has always been to sense that and find a way to connect within the overall structure of my plan for the course. The plan in this case still feels like a good one, but it and I am not reaching this group, or at least the vocal ones among them. This an in-between size group for me (40), but as I’ve taught successfully in both smaller and larger (and much larger) groups, I don’t think it’s the size. I’ve taught students earlier in their careers and later, all the way through professional development. I’m pretty sure that is not the cause, so another option that remains is that my changed brain configuration cannot do a good course design anymore, which while it occurs to me a lot to wonder about, doesn’t feel like the answer. Whatever the answer, there’s something about where this group is that I haven’t yet mastered and it feels terrible. Though I’m scheduled to teach this course again, I’m working on facing up to the fact that it’s entirely possible that I’m not the right teacher for this group and some other longer term plan will be necessary, which not only means I will have failed, but also jeopardizes a pretty big part of our medium-term planning. I haven’t given up yet, and have yet another idea for trying to improve things, but it’s discouraging. Meanwhile, other stuff inches along and come mid-March, gets even busier. That’s a daunting prospect just now, from the bottom of the hole I’m in. I’m consoling myself that my outlook is probably more grey this morning than the reality because it feels like I’m coming down with something (for which I do not have time) and that generally glooms up (down?) my outlook. So, back to revising my list to concentrate on the most important tasks first and keep putting one foot in front of the other. It’s the only way I know how to get through a time like this, and it’s time-tested, so that’s what I’m going to do.

Today brings a visit with Dr. Thoughtful to see how the cortisol levels are and to check on this clicking thing in my skull. Assuming I’m not as sick as I’m worried I’m going to be (how’s that for self-absorption!?), lunch plans include seeing a friend who always lift my spirits, so that should be a nice way to ease into the afternoon’s labors. One foot in front of the other. And maybe the sun will come out!

Saturday, February 20, 2010

Integrating Experience over Time

To preserve the best-quality sleep, even when a great thought or the perfect way to express it occurs to me in the night, mostly I don’t wake up enough to record it. It’s always a close call, and often regretted when the lovely wording or observation has completely vanished come morning. Those that are recorded in the night--always at the cost of restful sleep--are almost always useful and valuable, so it’s a constant battle of values to decide whether to wake up enough to save them or to take the risk of the inspiration evaporating. Over the last years, I’ve tried repeating the ideas out loud, telling them to Michael and asking for his help in remembering them (useless; I might as well have asked the bedside table to hold a thought), repeating a key word over and over... anything short of waking up enough to record the thought. This is a long way of saying that last night brought a great insight about my progress to date, and the process of integrating this experience into my life, that today is gone.

For whatever reason, I’m back grappling with this whole strangeness of what it means to have had a large brain tumor at midlife and the good fortune of mostly being able to resume my regular life with some adjustments. It’s all strange. At the same time, it’s odd to have had this experience, and odd to have escaped from it so relatively unscathed given the alternatives.

In thinking about the arc of this experience, and trying to attain some perspective, I’ve also come to realize that one of the things about my recent working years is how un-moored they’ve been. Once I left the provost’s office and took up my life with multiple masters in my new appointments divided across units and colleges, there’s no one person or place where anyone really sees the whole of my activities. Instead, everything I do is divided into discrete pockets, where each person who receives information is happy enough with what I do, but never sees how it fits into the big picture. While I suppose this is good practice for retirement (coming ever closer), it’s been an odd finish to a long working relationship with one organization. In a strange way, it brings its own sadness, which for whatever reasons of self-delusion and denial, I’m really only now coming to recognize.

After several weeks of flat-out activity, I’m tired. Things are not going to improve much until I submit grades in mid-May, I’m afraid. Each of the next two weeks brings travel, then a week of “respite” right before the sprint of an 8-week intensive course for professional students starts, and then the simultaneous end-of-semester tasks for three courses at once. This weekend, I’m going to rest. I’ve got stuff to do, of course, and this June conference I got roped into helping with may yet turn out to be the straw that makes it all collapse, but I’m moderately optimistic that with enough planning ahead and pacing, I can yet pull this off. As Dr. Donnie would say, we’ll know more next week.

In the meantime, as the eighteen-month mark approaches, it does feel like the prediction that there would be a major turning point someplace between there and two years may yet come true. Things are both improving and I’m getting better at reconciling to some of the deficits that look to be permanent. My attitude about it all is better, and certainly, my jokes about some of the problems are becoming polished enough that they get a laugh just about every time. That’s all progress. And, never forgetting the Urbana weather report, we’re expecting more snow this weekend, which will make it a grand time to be snuggling up indoors, resting and working in turn. Happy weekend to all.

Thursday, February 18, 2010

Old Patterns Creeping Back

It took leaving town for us to start moving back into old, familiar and half-forgotten patterns. After I’d accepted an invitation to give a talk in Albuquerque on February 14 some time ago, I belatedly realized that was a Sunday (so getting there, talking and getting back would chew up a whole weekend) and Valentine’s Day, to boot. We decided to make a weekend out of it together and arranged to stay at a friend’s place in Santa Fe. Michael unfortunately got his annual bout of bronchitis that weekend, so it wasn’t clear for a while if he could or should travel, but in the end it worked out. Neither of us really felt well enough to go out into the world to eat, so we ate in both nights, and those two evenings were almost like having our old, pre-tumor, life back.

For one thing, I was able to read fiction that weekend (gone again now, but returning more frequently, I think), and also, for the first time in a very, very long time, not only was able to, but actually felt like listening to the radio at the end of the day. One of the symptoms of this adventure has been a narrowing of my world, because I get into an overload state so easily. Michael almost automatically turns on the radio in whatever room he enters, and gets much of his news and information that way. My overload problems have disrupted a whole series of our regular patterns, because I lost my ability to concentrate on something else while there’s lots of other stuff going on, including talking on the radio. (Or, for that matter, music.) Thus, right now, either he goes without his sound fix, or I go to another room. This has changed our life patterns dramatically, and neither of us much likes it, though it’s a small-enough price to in other respects. But that weekend, it just felt right to find an NPR livestream and listen to a summary of the day.

So there we were in this cozy place, with a fire going, the radio on, Michael making dinner and me reading a book. It felt like old times. Then we had conversation over dinner and a quiet evening together, no video, just doing the things we had to do. It was great. It’s been so long since we lived in that life, and there we had two nights of it. Returning, I had a colleague here for two days, and it was an intense time, as we’re making teaching videos for the new class I’m teaching, and it consumed every minute in the two days. It took yesterday to catch up on email and figure out what else had fallen through the cracks, so now today, it’s back to a more regular routine, I hope. We captured a lot of great video and have very high hopes for the product we’ll be able to create. Meanwhile, I owe everyone else in my life on pretty much every front, so today is going to be about more digging out. Still, I have a greater sense of optimism than ever that, one of these days, my limitations won’t govern our lives and may even recede into history. Isn’t that a happy thought?

Happy Thursday.

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.

Monday, February 8, 2010

Perspective From Missteps

Yesterday, I reverted two or three evolutionary steps. It’s a long story, and a boring one, but what it boils down to is that I thrashed the system for a bit when confronted with a problem that was out of my control. The problem made me anxious, and even though the answer wasn’t likely to change through my conduct, the act of acting seemed important--at the time. Upon waking up this morning, I realized that all that action had simply been to make me feel better in the moment, though none of it was likely to have the slightest effect on the outcome. In thinking about it, I realized that is one happy change that has accompanied this medical adventure: I don’t do that as often as I used to do.

In part, this is because it has become essential to manage my energy all the time now that it is not an option to engage in self-gratifying bursts of activity without paying a price for it: doing so likely means foregoing something constructive. Recognizing that yesterday was an example of backsliding was actually a pleasant moment, because, among other things, it reminds me that I have more energy to allocate than a few months ago. Since this recovery is creeping along so slowly, and its progress is almost impossible to detect on a daily or even weekly basis, that was a nice realization.

The difference isn’t only driven by my new energy-management mandates; in part, it comes from just being older, wiser, and more mature. Most of the time. Time has brought a better ability to pick my battles (as it were) and to get more philosophical about them along the way. I’m better able to pick the things about which I can make a difference and to accept those where I cannot. I’m better at knowing what I control, and most importantly, what I do not. It was nice to stop and savor the progress, while acknowledging that yesterday’s whirl was mostly a waste of perfectly good time and energy.

As we approach another month’s cranioversary on Wednesday, things are coming together and are better than they have been in some time, with exceptions that most notably at this moment include the click in my scalp. I’ll do a status update on the 10th and in the meantime, am savoring yesterday’s example of wasted effort as a small victory. And resetting my resolve not to do stuff like that as much as possible. I like being in a place where mostly I don’t waste my energy or breath on choices other people control.

Today is all teaching, all the time. There have been some “issues” with the copying for my classes, and double-checking this morning for next week (I try to stay one week ahead), sure enough, more shortcomings. At least there’s time to fix it, and there will be no emergency… which brings me full circle to another pleasing example that maybe I’m actually maturing a little bit, over time. Growing up, the urgency of emergencies was often cultivated by the grownups around me, and it was a pattern of behavior I emulated for years, until realizing that I don’t actually like the way it feels nor does it make me feel important, necessary or useful. It just consumes energy I’d rather spend in other ways. Sometimes, just toting up the progress over time can be satisfying. Today is one of those days. I’m off to spend time with great students. Happy Monday.

Sunday, February 7, 2010

More Than Thoughts Rattling Around In My Head

There was almost no wind after the snowfall this weekend, so all the trees are still outlined in snow. The sun is shining and the world looks peaceful and pretty from the bedroom window. It's the perfect visual for a quiet Sunday.

For some weeks now, I’ve been having a strange sensation on my head in certain positions lying down. Yesterday, when waking up, I rolled over onto the spot and was able to pinpoint it enough for Michael to locate it by feel and later to look at it. Never being able to see the surgery site has been an ongoing frustration throughout this process for me, though there’s no one I’d rather rely on than Michael. There’s definitely something strange going on up there: lying down, there’s a spot where my skull clicks and there seems to be something loose under the skin. The clicking is what hurts. Sitting or standing, the skin tightens enough that whatever it is, it is held in place, which might explain why I don't find it by feel, either, when vertical. We’re wondering if the loose item can be a bone spur or chip or maybe one of the spacers used when putting my head back together. It was nice to figure out why the part that hurts so much at times when prone isn't so apparent when I’m sitting or standing, though the overall result is a bit disquieting. We’ll get an appointment and see if we can figure out what this is and take it from there.

After the exertions of the week, we’re looking at a quiet day. I hope to wade through my reading stack and reduce the pile a bit, read a bit and take a nap. It’s an ambitious agenda. May your day be peaceful and calm, even productive, if that’s your goal. It’s not mine.

Friday, February 5, 2010

Over and Over

Is Groundhog Day the Bill Murray movie where he has to live the same day over and over until he gets it right? (I know, I could look it up but certitude isn’t all it’s cracked up to be.) Whatever movie that is, that’s my current experience. I’m completely hung up on the next step in a multi-step project and have been banging my head against the wall on it for days. OK, weeks, if you want to get all precise and picky about it. Whatever.

This morning, I realized, again, that what I need to do is to break it into much smaller chunks and start that way. Even though the smaller chunks are also difficult and the way forward isn’t entirely clear, the first one is at least a more plausible task that has a beginning that can be approached.

Why is this a lesson about doing hard, big projects that needs to be re-found so many times? Why doesn’t this wisdom stick and why isn’t it accessible every time there’s something complicated and hard to be done?

Yours in frustration. At least it is finally Friday this week. Only the afternoon and then tomorrow’s keynote speech before it’s the weekend. Sort of.

Wednesday, February 3, 2010

Catching My Breath

With this new schedule, it’s time to rethink how the rhythm of the week goes. Again. With teaching all day on Mondays (well, only five hours in the classroom, but with pulling stuff together before, tallying and reflecting on needed improvements for next time afterwards, office hours, and student questions, it takes all day), Tuesdays are going to have to be quiet days. Like an idiot, somehow I didn’t anticipate that in advance (query why not), so Tuesdays have been too full for comfort so far. That means it’s Wednesday before I catch my breath and manage to catch up on my email, clean off my desk, etc., and by then, I’m really dragging. The constant loose ends are making me kind of itchy and irritable. This morning, I finally picked up some clutter that’s been bugging me for days, but I’d felt so rushed I hadn’t stopped for the necessary minute or two to tidy up. What a difference that made in how things felt for then doing the next pieces. I’m working now on clearing at least the mornings on Tuesdays for the rest of the semester to build a better structure looking forward. Live and learn.

Yesterday’s med school teaching reminded me--again--that there’s something important I’m not getting about how the pieces fit together. I’m still seeking that sweet spot where there’s a convergence between what they need to know (based on observation, required graduation competencies and reports of their supervisors and professors), what they want to know, and what engages them in class sessions. It’s puzzling to me why they’re so different from most other groups I work with. Their education makes them more data driven than most groups, so always bringing the research base is mandatory. They aren’t very interested in hearing from anyone except physicians, but there are ways to get around that, which I adopt. Beyond that, though, there’s still an unresolved set of issues. See earlier refrain: live and learn.

Today brings yet more teaching (covering two hours of class for a friend) and then even more piled up meetings before I can get back to pulling together the pieces for the class-under-development and the class-needing-revision. Today also brings, I hope, the first sit down in the new writing plan. The optimistic editor suggests a May deadline for the revised manuscript. Gulp. And, still to work out are all the details about what on earth is going on at the big U for early separation incentives. So far, every single plan put out has been retracted within a day or so; it would be nice if that settles down. At least things aren’t boring. That would be worse.

Happy February.