Thursday, August 27, 2009
The stimulus for these reflections is a rising awareness that something similar seems to be going on right now. The daily dose of steroids that has been my regime for months was originally supposed to be an interim measure, to get my adrenal system going again. The theory behind Plan A was to let a very low dose of steroids send signals to the portions of the system that had shut down during surgery and its aftermath. The hope was that the adrenal system would get in the rhythm and pick it up on its own, as the ACTH test showed that, when properly stimulated, it produces cortisol just fine on its own.
Plan A didn’t work, as even after months, my morning cortisol levels were still quite a bit below “normal” levels. Plan B, now underway, involves tapering off the steroids by alternating a full dose one day with a half dose the next. The hope is my system will notice the missing elements and respond by producing its own.
The tapering is going well enough, with no energy crashes or other obvious effects. This is a positive sign, as early on, when I missed a dose by accident, the effect was fast and unmistakeable: by late-afternoon, there wasn’t any energy left. None. What is happening is now is, I suspect, another of these subtle mind-body interactions that’s easy to explain away for other reasons. The effect is that, by after dinner, I switch into a low-key “off” mode. Unlike most evenings after dinner, I have no impulse to circle back and tidy up my desk, answer email, make lists for the next day, read or work on anything. In the rest of my life, it’s a rare evening that none of those happen. Instead, for the last several nights, Shea and I have been watching episodes of NCIS. This is unusual for us because while we have family movie night on Fridays (and some Saturdays), I cannot recall a weeknight where we’ve watched anything in a long time. Yet that’s been my urge, and so that’s what we’ve done. Sure, there are other extenuating factors, most especially that we leave to take Shea to college tomorrow, but my hunch is that the urge to sit and watch, not do anything, is another side-effect of this phase of the medical adventure.
A different, less palatable side effect of Plan A has been a slow-but-steady weight gain over recent weeks, after being completely stable (or losing) since the immediate post-surgery dip. The disturbing thing has been that this gain has occurred in the face of regular exercise, at least 20-30 minutes a day. (Yes, I monitor intake, too, and it seems unlikely to be the source of the problem.) Hence our interest in NCIS: we’ve been auditioning shows for the treadmill. An episode of an hour-long broadcast show has between 42-45 minutes of content, usually, so is will be perfect for providing diversion for an increased period time to help counteract the gain. The steriods seem likely to be at the root of this and I can hardly wait to be quit of them for that reason alone, though there are also other reasons, I guess, to wean off even this small dose. We’re hoping Plan B works, and I regain some equilibrium both on the energy and weight front. Plan C, waiting in the wings, is taking small doses of real cortisol, as opposed to artificial/pretend-cortisol in the flavor of prednisone. We haven’t read up on that one yet, and probably will not for a bit longer. I’m sure ready to have some energy and interest in anything other than sitting come nightfall.
It’s hard to believe that the eve (as it were) of taking Shea to college is upon us, but it is. She’s finally started packing (yesterday) and has done a big round of leave-taking with her friends. Wish us luck!
Wednesday, August 26, 2009
It took me four days to solve it.
In my defense, my experience is that the British puzzles are more complex than ours, whether they’re crosswords or number problems. Still, it got me started and I can do Sudoku puzzles again. The difficulty of the puzzles I can solve is at a lower level than they were the last time it was possible, and I’m hoping that practice will increase it over time. Still, it feels wonderful to be able to tackle them, much less to have the interest in doing so. It seems to me that the interest and ability to tackle them are heavily interrelated, though the exact mechanics of this peculiar chicken-egg problem are mysterious. In any event, one more thing that we thought might be gone for good seems to be creeping back, so I’m taking it as a good sign.
Meanwhile, I’ve been working on my own conundrum and come to the conclusion that it’s not all up to me, and that (please excuse the expression) there’s more than one way to skin a cat. One of my biggest failings, I know, is that my scale for my own conduct is a trifle rigid. Striving to find a way through this maze, with principles arguing either way, has been stressful. Larger events are moving and I hope that the path I’ve chosen will eventually prove to be a prudent and wise one. Time will tell. As Doctor Donnie would say, we’ll know more next week.
Monday, the first meeting of my main class this semester was terrific. Some groups have wonderful chemistry and augur well from the beginning. This was one of them. While it doesn’t always pan out that way, it does more often than not, which makes the semester to come feel exciting and hopeful.
The bureaucratic snags are, one by one, getting ironed out. After weeks (if not months), it looks like my appointment has finally made it through the system. The computer in my new office is, after some effort and several re-dos, recognized and permitted to run on the local network. Still to go: the missing summer pay and the files deleted from the law server by mistake, for which they’re having trouble locating a backup. Following a local mini-trend, we gave up on campus parking, and I’ve been walking to and from my new office. The bus routes have all changed, so figuring those out comes next.
All in all, if (when?) the university acquires some new trustees and they take up their duties, it will be a semester of new beginnings on many fronts. I hope they’re all good ones. Yours, too.
Sunday, August 23, 2009
There’s still something about the combination of new places and people that leads to visual/sensory overload and causes difficulties. Thursday night, we went out for a (great) dinner in Chicago with friends, and by the end of it, I’d lost my coordination. Fortunately, it was at the very end of the meal, and we were getting ready to leave anyway. As I think about it, the tipping point might well have been gathering myself to get up to leave. I'd been managing it all sitting still, but adding movement upset whatever equilibrium I'd had. Getting outside where the number of people and noise was reduced helped a lot, and by the time we’d walked a block to the car, my balance was coming back into service and my visual field had calmed down. This kind of thing has become a regular feature of life, and we're getting better all the time at managing it.
The friends we saw in Chicago hadn’t seen me in some months, and remarked upon the progress I’ve made since our last visit. In the everyday-ness of life, it’s too easy to lose track of the progress in this slow and less dramatic section of our adventure. This has been less so recently, when there’s been a consolidation of gains, and overall, I feel better than I have since well before the surgery. Sometime in the last few weeks, we've gradually moved up another notch, and this new level of functionality is most welcome. At the same time, talking with the Chicago friends, the extent of my memory/cognitive gaps was on full display. Our friends used to be here, though for more than a year they’ve been immersed in a new place, jobs, people, etc. Still, their recall of names and events here was crisper and faster than mine in noticeable ways. I usually came up with the name or managed to get to the same place as everyone else, but much more slowly, with consistent lags in my access time. That’s frustrating, since being quick has always been a hallmark of Tina-ness, and that seems to be gone, at least for now.
Upon reflection, there have been fundamental changes wrought by this process, including this new fuzziness in a variety of areas. I can compensate and/or adjust to these differences, but that doesn’t alter the fact that they are real, and some of them are fairly major as lived from the inside. They’re just not defining when put in the larger context.
One of my goals early on was to deal with what came with patience and grace. Achieving even half of such a big change seems worthy of note. I never have managed much patience with any of this. It was worth aiming for but while I’m calmer, patience probably doesn’t describe me at any point. On the other hand, it feels, at least to me, that for most of the adaptations that have been required, I’ve managed with relative grace. When you stop laughing and want to find a way to dissent, please let me down gently. Please also remember that there was remedial work to do before starting to achieve forward progress, and credit that in your calculations.
Overall, I’m slower, calmer and sadder inside. Each of those contributes to an ability to perceive, focus upon and celebrate the smaller pleasures of life. It’s an odd way to come by acceptance, and this adventure still seems unbelievable and surreal. The concept of having had a brain tumor--that would be in my head--is one that remains confounding. And then, while I’m thinking about all that, I notice how beautiful the trees outside our bedroom window are in the angled morning sun and switch to thinking about how it’s a gorgeous, sunny, atypical August day here. There’s no humidity to speak of and it’s a truly lovely temperature. We walked in Crystal Lake Park yesterday and likely will do again today.
I choose to be happy. There’s much to be happy about. May it be the same for you.
Wednesday, August 19, 2009
Aside from the travel, this week has been about cortisol levels, which as measured this morning, are still lower than desirable. For a quick recap, morning cortisol levels (when they’re the highest, declining over the course of the day) are ideally about 18-20. Mine was at 3-5, by the time Dr. Thoughtful figured out that secondary or tertiary adrenal system failure might explain my stamina problems and cognitive fuzziness where I felt like I was swimming through mud most of the time. Since then, I’ve been taking a very small steroid dose every morning, which simulates natural cortisol levels and improves dramatically my energy and crispness. However, this regime has not achieved its primary goal of re-starting my own adrenal system so it produces my own cortisol. Today’s level, the same as the last abstain-and-test result, was 11. We previously established that my system produces plenty of cortisol when properly stimulated, and this regime was supposed to help it relearn to do that. Since it didn’t, we’re on to Plan B.
It’s not a good thing to stay on these steroids indefinitely, so Plan B means tapering the daily dose to see if my system will pick up the slack that still exists. If this doesn’t take after a while, we will need to consider moving from steroids to artificial cortisol for a longer period.
Tomorrow, we hit the road for 36 hours or so in Chicago, then home for the weekend before classes start on Monday. I’m excited about my new adventure, even if the paperwork seems hopelessly screwed up right now. Otherwise, I’m still struggling to devise the most constructive, appropriate path to take about my larger concerns. It’s a really hard problem and I’m working my way through it.
Enjoy what’s left of summer!
Sunday, August 16, 2009
Many years ago--decades, actually, not years--Michael’s parents gave me a nice watch for Christmas. I’ve worn it daily ever since. This summer, it became erratic, so we figured the battery was dying. Except its battery has been confirmed by several jewelers as really strong. The exterior of the watch has rubbed through the surface metal in some places, the band has been replaced many, many times, and we now face the option of replacing the movement (pricey) or getting a new watch (variable). Even if we replace the movement, the case is still pretty dinged up. I don’t really want a new watch. The ones we looked at today do not hold a candle to my well-loved, well-used, old standby. The watchmaker we always used for special jobs has long since died... and watchmakers of any variety are few and far between these days. I know people who have many watches and who match them to their outfits. Me, I’ve always worn just the one, and loved and appreciated it. It’s a conundrum that bears some thought.
I’m off to Lexington, then home, then Chicago, then classes start next Monday. Life is moving fast. Too, too soon after that, we take Shea to college and she starts her new adventure. In the background, I’m still trying to figure out the right course to navigate going forward. It’s a hard one.
This week, I feel like my recovery has taken another leap forward to a new level. I’m still broken, but to a much lesser degree than in quite some time. I’m again hopeful that I’ll regain my sense of wholeness and self, including my full range of movement and a little more short-term memory and stamina than I have now. All the same, this week’s progress, intangible yet still detectable, is encouraging.
I’ll miss my Sunday at home and am also looking forward to seeing friends in Lexington, as well as working with their department heads and chairs. The skies look clear and the weather looks OK in between here and there, too. Here’s to a smooth trip.
Friday, August 14, 2009
Home is a good place to be. Being with Shea, in our own house, seeing good friends, with the dogs around, is all good. Right now, though, is a horribly difficult time in other arenas. It’s not something I’m going to write about until I’ve resolved what I’m going to do because I will not be the only one to bear the effects of some of the possible--and attractive--courses of action. Thus, I’m trying to figure out how to speak out in a way that is responsible, professional and appropriate, and not just out of emotion.
Tomorrow (well, Monday, in reality), my new life in Business officially starts. There will also be an appointment in Medicine, though the paperwork for that seems to be lagging. The projects there are interesting and energizing and the start of a new semester is always fun. I’m trying some new stuff in a class I’ve taught many times before and designing a completely new class for Spring. I have some reviews and commentaries to finish, and of course, there’s always the book, on which making further progress this semester is a primary goal. All the projects, new and old, should be contributing to positive neural pathway growth, so getting back to 100%, or something near to it, becomes possible.
For now, off to physical therapy.
Monday, August 10, 2009
Instead, I had a fast experience: diagnosed on a Thursday, surgery the next Wednesday, home on Saturday. It was relatively problem-free. Yes, my right arm/shoulder still have “issues.” Yet they function well enough to do most of what I want and need to do, with some adaptations. Yes, my stamina is not great and, yes, my cognitive functions are compromised in some areas, most especially reading. At the same time, we celebrate neuroplasticity and are doing all we can to stimulate and grow new neural pathways. My skull is bumpy and scalp still weird-feeling. Balance is not always smooth, natural or steady. Some forms of insurance, like life and disability, aren’t available to me any more. Hormones rage.
That’s a really nice way of saying that I’m sitting here with a fan blowing directly on me and I’m still sweating in our air-conditioned house. Surgery seems to have stimulated a re-run of menopause, which until now was too unpleasant and aversive to mention here. Let me suggest that once is more than enough for any person (or couple) and this only reinforces my conviction, formed at earlier stages of life, that God is not a woman. Not possible. This design is stupid and poorly executed, too. If you buy me a drink, I’ll expand at some length on these thoughts. If you buy me two drinks, I'll keep my philosophising to myself.
Way counterbalancing all of that, not necessarily in priority order, throughout my experience, I had hair, family and friends, health insurance, flexibility in my job, sick leave, loving and caring friends, ditto family, and few complications.
Still, it’s a struggle to integrate the whole experience. Who gets a brain tumor, anyway? Especially one the size of a baseball that had to have been growing for years if not decades? What does it all mean? Beats me.
Here’s what I do know: it’s the people who matter in this life, and we know some of the best. A sense of humor goes a long way. You cannot find the high spots unless you are looking for them. It’s better than the available alternatives.
So, exactly eleven months since surgery, we are toasting, and giving a standing ovation to, all of you out there who have ridden this conveyer belt with us, reading, supporting, coaching, advising, crying, laughing. Our love to all of you.
Wednesday, August 5, 2009
It occurred to me the other day that this medical adventure provided the perfect opportunity for personal growth. One of my biggest flaws, one could even say my biggest character defect, is that I tend to be a little black and white about a lot of things. My challenge has always been to see more grey in situations, and to be more forgiving of myself and others.
Seeing things clearly is an asset in most of the professional situations in which I find myself and, indeed, is the basis of much of my career. At the same time, much of life falls in the grey zones and being more open, and more accepting of that, is a useful trait.
Having a health challenge that’s invisible after the initial recovery, and one in which much of the progress is a matter of perception, is the perfect treatment for my preference for clarity. Nothing much is clear now, and learning to tolerate that is a useful and character-building exercise for me. I haven't gotten to being grateful for or celebrating this exercise. Maybe that part comes later?
I’m struggling with another chapter of my book, and it’s not going well or quickly, so rather than sticking with this much more appealing form of writing, I’m going to get back at it.
Best to everyone for a great August day.
Monday, August 3, 2009
August is wonderful, not least of which is because the email traffic is dramatically reduced, except from friends, which is always welcome. August is a wonderful time to return to work, when everyone else is gone on vacation. It leaves a quiet space for regrouping, resettling, and re-starting.
How did I spend my summer vacation? Some writing, though less than I’d hoped. Some reading, ditto. There are more days when I can follow a sustained narrative, so that’s progress in the right direction, but still frustrating when it blinks out again. Lots of soaking up sunshine and relaxing. We found two extraordinary restaurants via total serendipity, the best way of all. We have had three wonderful meals, returning to one of them for an encore, and will probably go to the other one more time before we leave. We saw parts of the countryside we’d never seen before, visited friends, fixed this and that, and otherwise just luxuriated in the quiet. I’ve been working to assimilate all the changes of the last year and to gear up for the changes coming in the months ahead. I suppose the years when we added babies were as eventful as this one has been, and probably also the other years when we had major deaths. But otherwise, this has been a humdinger. I’d like to try to figure out if I can make any of this blog more cohesive into a memoir anyone would want to read, and still don’t quite have a handle on that or if it’s just a narcissistic fantasy.
Early on, this adventure had the sensation of having stepped onto a conveyor belt that was going where it wanted, at the speed it wanted, and we had little control over it. In recent months, that feeling has subsided, to be replaced with the feeling that we’re on an uphill climb. The good news is, we under our own steam and setting our own direction. The bad news is our direction is still uphill. The timing of the transition isn’t totally clear to me, but probably coincides about with the time that I started dreaming vividly again, maybe two or three months ago. Maybe a little more than that, somewhere in five-six-seven month mark. The end of the swelling in the fifth and sixth months, revealing the new shape of my skull was the gateway to the new era, I think, though it took a bit more time after that to settle down.
I hate climbing. I could walk forever on the flat, but find uphill difficult. It always sets me to huffing and puffing, while Michael strolls along seemingly unaffected. When I remarked upon this, he, in his ever-precise and thoroughly honest fashion, pointed out how much weight I have to haul which undoubtedly adds to the cardiac load. Thanks, Michael. I gather the boules players laud him for his honesty in calling scoring, even when it goes against him; they refer to him as “the noble one.” It works better for me in boules than on our walks.
We’re way above the low points and continue to make progress in our climbs, both in our daily walks and in this unknown path we’re on with this medical adventure. There’s still a distance to go, and our retreat from reality has been restorative and soul-refilling. Onwards and upwards.