Thursday, March 25, 2010

Irrationality Reiging

It’s a rare for a wave of complete irrationality to take over my thinking, but that’s happening now. We figured out that I hadn’t had a physical in some time, due to the more pressing focus of the full-blown medical adventure, so I had one recently and have been working through all the associated testing. One of those suggests a biopsy would be a good thing, and my whole reaction has been: No. The follow-up MRI looking for brain tumor recurrence is in early April and other than that, I feel medical-ed out. It would require finding yet another doctor in yet another speciality and undergoing even more testing for something that’s not particularly likely to be a problem. You can get the flavor of all my rationalizations. Even recognizing the essential dysfunction of my thinking process, for the moment, I’m not getting over the visceral reaction and so am just putting the whole question aside. I will think about it again after the MRI and results are behind us, and maybe after some more time helps the residual stress levels from recent events to recede.

It’s a grey rainy day today, and all I can think is “April showers bring May flowers.” It’s not April yet, I know, but almost, and from my desk I can see daffodils blooming across the street along with the crocuses in our parkway. Even in the greyness of the day, they spread cheer and hope. That leads me, of course, to thinking about causes for hope, and for me right now, it’s that I’m almost ready for the rest of the semester. Only another few tasks to go, and then, I hope, I can get back to writing the next piece of the book chapter that I have have been thinking about. At least in that area, I know I’m being rational right now. The other stuff, I’m going to think about another later.

Enjoy Thursday wherever you are.

Sunday, March 21, 2010

Taking Stock

Yesterday was wonderful, with no appointments, no obligations to others, and a full day of quiet, just for me. Because it was the beginning of spring break here, there was no pressure to do anything on a particular deadline, so I could just follow whatever train of thought interested me. The night before, I’d had a full night of great sleep and the sun was shining. What could be better?

In the end, I spent all day at my desk, not just cranking away at the next pressing deadline, but actually cleaning up and reorganizing. It felt great, because it was an act of reclaiming my space, my priorities and my sense of autonomy. I even made progress on my goal of recycling, pitching and setting stuff aside to donate. It’s hard, but I see glimmers of progress of getting rid of all the surplus “stuff” that I hang onto. I’m completely terrible at moving “perfectly good” things out of my life, even if I’ll never use them again, but, millimeter by millimeter, I’m improving. The pile I set aside is pleasingly large and there are even places that will be interested in taking those things. It feels good.

I didn’t get through as much as I’d hoped, but what I did get through got thoroughly organized and systems established so routine tasks will not take so long in the future. In a victory on my way to another of my goals, I succeeded in focusing on the big picture and didn’t just mindlessly organize all that was in front of me because I'm good at it and because I could. For example, I’ll probably never again teach one of this semester’s classes. Though I see clearly changes that could be made to improve how it flows, making those improvements, which are not likely generalizable, doesn’t fit my superordinate goal, which is to make consistent time for working on the book manuscript. So, I didn’t go those directions. This was a big win for me, as usually, my compulsion to make things better takes me through all those steps, regardless of the big picture. Compartmentalization works!

My illness seems not to have tipped me into a cortisol trough, which was our biggest concern after the acute symptoms receded (and before). Though I always fret about unwarranted use of antibiotics, it seems to have been a good call in this case, given how fast they made a difference. Then, the question was whether my compromised adrenal system was conked out again, which apparently often happens in tandem with illness and stress. That seems not to be in evidence, which is very, very encouraging. We still need to see how the next week goes, but as there should be ample rest and sleep this week, the circumstances are about as good as they can get for a full and smooth recovery without backsliding.

Taking stock of where I am after an unbelievably stressful period, there’s a lot to feel good about. A year and a half out of surgery, I feel more like myself again than at any previous point. My thinking is almost completely back to me-ness, though the remaining deficits are looking more and more likely to be permanent. It’s possible to compensate for most of them well enough that they’re usually not visible to others, and some of the time, I don’t even notice them any more. The love and support from family and friends that have been sustaining throughout this period were on full strength through this last period, and we were able to accept, appreciate and, I hope, acknowledge its centrality to a quality life. We’re part of a network of good people and we’re stronger for it.

The biggest remaining marker of this experience is in my dramatically reduced energy levels/stamina. I simply cannot do what I used to do in a day without stopping to rest. There are more times than is comfortable when that still smacks me in the face because I didn’t factor that into the day’s plan. I’m learning to plan around the energy lulls, and Michael has gotten more assertive than used to be his habit about questioning a plan that doesn’t seem feasible. We’re learning, even though it’s such a big change.

What does a person feel like who has had brain surgery? I still struggle with that question, because I’m not sure I feel that way, whatever it is, though I’m clearly that person, or one of them. This is a different question than the old one that haunted me for so long (“who gets a brain tumor, anyway?”) and I’m not sure why the preoccupation has shifted, why I’m thinking about it, or what the answer is. This seems to be a journey, not a destination, and since that’s what’s on my mind, that’s what I think about, often while feeling the remarkable dents in my head. At least, I do when there’s time to wool-gather and lately, there hasn’t been much of that. Since I believe woolgathering is healthy, both for rest and for creativity, while Shea is still home on break, I hope we’ll make time to do some puzzles or build something or do something else fun together. That should be a nice complement to my own private pleasure of working to impose order across my personal domain.

The changes from this experience are not bad changes. Where we are today is very different than used to be, but there are many silver linings and positive aspects. This is a good life. We’re lucky to have it.

Wednesday, March 17, 2010

Making Lemonade and Working on Compartmentalization

My lemonade maker is working overtime and cranking out top-quality lemonade at unprecedented volume, given the bumper crop of lemons in my life right now. Still, getting a machine to work at this degree of efficiency with this volume of output is tiring. I’ll be glad when this week is finally over and it’s Spring Break, with a hope of catching my breath and getting a better handle on the things needing to be done, as well as finally knock down whatever this lingering illness is that I have.

The stress and pace of the last chunk of time, which has been so harried I cannot even measure its length, has really taken a toll. On the other hand, the good news is that, amidst the stress of it all, patterns of thinking and creativity reappeared for the first time since surgery. Since I’d feared those capacities were lost, it was a nice moment. If I’d had more time to savor it, or if anything other than extreme stress had brought it back, it would have been pleasant.

My next goal, after redoing my to-do list and catching my breath, is to figure out new patterns of thought that can help me respond better to this kind of pressure. The gold-standard boss I had early in my life used to preach the virtues of compartmentalization in stressful circumstances, and my new goal is to improve my skills in that area. The combination of the stress and meeting 100 students in a new room for class yesterday re-triggered the vertigo/visual overload problem I’ve had on and off since surgery; for a while, I thought about going to the emergency room, and in the end decided to try just resting in familiar circumstances to see if that would right things. On the one hand, I wasn’t sure that there was anything that could be done for me, and on the other, it was aversive to think of exposing myself to even more visual overload in what was bound to be a chaotic with new stimuli. It all turned out ok, and the vertigo waned after being at home in the quiet for a while. There’s some of the same leftover effects I’ve always gotten from this state, but they’re receding, so I’m working on the huge numbers of large vats of lemonade left over from recent events. I’m sure there’s a use for them, and I’m working on a marketing plan. Can you tell I hang out with business-types these days?

Back to the grindstone, with a lighter heart and renewed resolve to compartmentalize the bejeebers out of the problems, the better to enjoy my lemonade. Cheers.

Wednesday, March 10, 2010

18-Month Cranioversary; Status Report

Eighteen months ago today at this time, I was in surgery and all of you were standing by with healing thoughts and prayers. Our family owes so much to all of you for the support, caring and love that got us through a scary time.

In today’s here and now, things are almost normal, though not quite and still a little “off” in some dimensions--and so much better than we ever imagined. I can work with adaptations for still-limited energy. I’ve learned a whole slew of new compensatory mechanisms for the limitations that remain, and some of those are still slowly receding. Last week, for example, when the elevator was out in the building with the huge open stairway that has been a serious challenge for me, I managed both up and down without falling down and without help. I might have looked a little silly holding onto the railing with both hands on the way down, but if so, the people around were too nice to comment in any obvious way while I was around.

My scalp is mostly better (still a small strange spot) and the major head issue (at least on the outside) is where my skull clicks. The check-for-tumor-recurrence MRI has been scheduled for next month and I’ve got an appointment with the neurosurgeon then to talk about the scan and my skull; at my physical last week, the family practice guy shunted us there. He likened it to the situation with kids’ heads where the plates grow together over time. It seems odd to me that the click would develop this late in the game, but maybe it was there and I just didn’t notice before? The other possibility is that one of the spacers holding the replaced skull section in place has worked its way out of place. We’ll know more after the scan next month. (Note: Michael thinks it’s my scalp that clicks, and he’s usually right about stuff like this, but it sure feels like my skull to me.)

Otherwise, I don’t do my exercises often enough for my shoulder, which is the good news because it’s not an obvious enough problem that I remember all the time. Still, to get full mobility, I should, so I’m trying to build in reminder triggers in daily life, by leaving the exercise bands out in full view so I see and remember to do the exercises.

My balance is still wonky but improving, I think and hope. My stamina is always a challenge, but if you compare now to a year ago, or six months ago, it’s clear that there’s forward progress. I still almost never have the urge or ability to read fiction, though I read a short book last night when I needed some serious escapism, so that was progress, too. Several friends have suggested that a waning interest in fiction is partially a matter of aging (maturing??), and urged me not to chalk this all up to tumor/surgery. It’s such a big hole in my life, it’s hard not to focus on it, and yet I’m mostly managing, given the overall positives. Decoding the comics seems gone for good, which also seems pretty minor in the big picture here. The jury is still out on whether I’ll be able to write an entire book manuscript again, and also whether that’s brain injury or just natural lack of capacity. Time will tell...

There’s a ton to do today and while there’s more detail that would complete the status report, it is going to have to wait for another day. Thank you, from the bottom of my heart, for the friendship, love, advice, cheering section and general goodness all of you have offered through this adventure. I cannot imagine what it would have been without you. I feel incredibly lucky and blessed to know such great people.

Sunday, March 7, 2010

Focusing on the Good News

One of the best things about my work life is that I mostly get to pick the things I think about and spend energy on. There are a whole series of corollaries that go with that, most irritatingly right now that I’m interested in more things than I have the time or energy to pursue. So, if I’m feeling overwhelmed, that’s another of the good problems to have. Furthermore, almost all the things that absolutely, positively have to get done are things that engage my imagination and challenge my intellect, so that’s all pretty cool. I’m working on holding that thought, because the list of pressing, important things requiring some action is a little daunting.

Aside from being the good problems to have, there are other bright spots in this. Consistent with the old adage “if you want something done, ask a busy person,” my time management skills are improving and (here’s a really great thing), I’m both getting better at saying “no” and shedding a lot of the stupid stuff as I go. Well, a little bit better at saying no. Ok, would you buy that I’ve said “no” to some things this semester that I might not have before brain surgery? Since I have more limited energy than I’d like, there are some things I just cannot do, and the practice has, as with so many things, helped me improve at it. Still, it’s not what you’d call a well-developed skill and it could stand to improve even more.

Lately, I’ve been using Randy Paush’s time management talk as inspiration and limiting my to-do lists to “important, due soon” and “important, not due soon.” It’s helping me stay on track and moderately productive, but the list doesn’t seem to be shrinking much. What this new list style helps me do, I hope, is stay ahead of catastrophe and avoid dropping major balls. Still, I’m running as fast as I can and it still feels like I'm getting behinder all the time. As the clutter is piling up around the edges of our life, I’m investing in bigger and bigger blinders because looking at it would just be crazy-making. I’m hopeful that this is going to lead to an increased ability to shed more stuff soon--like after the semester ends, maybe--but in the meantime, I’m keeping my head down and not looking around while I move from one due date to the next.

What I’m proudest of is that, mostly, I’m still managing to live by my values and to carve time out to spend with people. Not as many as I’d like, not as often as I’d like, but every week, I’m managing to have lunch with someone, or find a small spot to visit, or at least to reach out in some way. Some weeks right now, it’s a weaker reach than I’d like and I’m trying to keep my eye on the goal of doing better. At least, though, that hasn’t fallen off the cliff, as has trying to stay on top of the clutter.

Monday brings two classes, Tuesday brings a whole slew of medical tests, and the rest of the week is my last chance to catch my breath and catch up a little bit before the deluge of the second-seven-week class that starts March 16. There’s a ton of stuff to do for Monday’s classes, for the starting-up class, for the overdue advice column, never mention the new idea hovering just out of reach, and actually doing the writing that’s on my mind. These are the good problems to have. I’m interested in all this stuff. If you see me and I’m muttering to myself, that’s what I’m saying.

Thursday, March 4, 2010

Still Whirling

It sure makes the week go faster to blast a hole the size of two days in the middle of it. My travel is almost always scheduled for the end of the week, since for years my teaching has been clumped on Mondays and Tuesdays. As a result, returning from this unusual mid-week trip leaves it now feeling like the weekend, except for the tiny little pesky technical point that there are still two more days to go.

As is so often the case, when the time came for this trip, I wished I hadn’t agreed to it and fantasized about a weather cancellation, or even just not going. Once underway, though, the trip was a reminder of the benefits of stretching beyond the familiar. For whatever reason, it most reminds me of the times that Michael and I stop someplace we see from the road that wasn’t scheduled, and find something great that wasn’t predictable. Of course, sometimes, there’s nothing that interesting to see and it’s a waste of time, but more often than not, serendipity presents something quirky, fun, different and memorable. We have great memories and, often, souvenirs, from those diversions. This week's trip contained its own serendipitous pleasures.

The talk was at NIH and the people were smart, interesting, and, it turns out, focus their research on neuroplasticity and brain issues. Until I looked them up on Sunday, that part hadn’t penetrated my consciousness. We had a whole set of great conversations: among other things, they were taken aback that no one had suggested a neuropsych workup following my craniotomy nor continuing work afterwards. That wasn’t the main topic and while it would have been interesting to pursue it more in depth, that wasn’t why I was there; I’ll do some research on my own to develop a better baseline understanding and then can go back and ask more questions of those with whom I especially connected, once I’m a little better educated.

Beyond the personally-relevant information (including a little more explanation on the 18-24 month window after brain surgery and what it means in physiological terms), the conversations were great and the combination of preparing for and then giving the talk have left me with a great idea to pursue, if only I can wrangle the time and energy in the midst of an already-full plate. The thing that was nice about that was actually HAVING a new idea. That’s two in recent days, which is an encouraging development in and of itself. Now I’m back grappling with that time-management dilemma where there’s something engaging catching my attention and if I work on it, I’d make real progress; it’s enticing, it’s fresh, and the connections seem obvious at the moment. However, other items are demanding attention that are pressing, due and also important, though less immediately engaging. Doing those sometimes boring things can push back the interesting projects enough that the ideas fade and the progress never happens. And sometimes, the boring stuff doesn’t actually get done either. I haven’t stated this very well, but I find myself on the horns of this dilemma regularly. My new approach is to permit a time-limited amount of work on the fresh project, which is good for productivity anyway, I’m finding, and then, having rewarded myself, and having created a running start, turning to the boring obligatory stuff. At least that’s my story right now, and I’m sticking to it.

I finished a terrific book on the way home: Switch: How to Change Things When Change is Hard, by Chip and Dan Heath. Bob Sutton recommended it on his blog some time back and it’s well worth the time. It is still reverberating in my head and I want to go read some of the work it references. Fun!

So, one talk down this week and one to go still tonight. Aside from trying to catch up on all that got pushed aside by travel, tonight’s talk still needs to be crafted. Back to work. Happy Thursday.

Tuesday, March 2, 2010


Back in the olden days, there was playground equipment that included a self-pushed merry-go-round. This week feels like being on the outside edge of one of those, holding on for dear life. The device I remember wasn’t one of those staid merry-go-rounds where you sit on a horse or worse, in a boat, to ride around in a circle to music. Instead, it was a single flat surface with bars rising out of it and it would go as fast as our legs would push it. These days, of course, such equipment isn’t safe and doesn’t meet standards, and so they’ve all been removed from parks and schools, at least in this neck of the woods. Still, I remember the feeling of riding one and it has many similarities to what this week feels like. There was the work of pushing and the thrill of throwing yourself onto the platform and holding on for dear life, knowing you couldn’t safely get off until it slowed down and simultaneously thinking “this is too fast” and “faster!," all the while knowing that you’d made the thrill yourself. Yup, sounds like my week. To make things worse, an idea came to me yesterday that is a really good, really attractive one, that would take time and energy that simply isn’t available right now--but it’s really enticing. At odd moments throughout the day and night, I find myself trying to figure out ways to shoehorn it into my life. Prudence says “no.” We’ll see what Tina says, when the time comes.

One of the pleasures of growing older is getting to know oneself and growing comfortable in one’s own skin. That knowledge tells me that the new idea is one I’m likely to explore even as I feel a little frantic about how I’m going to come through on all the obligations I already have. And, did I mention? I just noticed yet another small thing that needs to be fixed: the end cap trim on the bathroom cabinet has come off, so now I need to remember to ask Michael if we even still have it, in which case it’s a little job just to glue it on (one of scores of such “little jobs” on our lists) or whether it’s a bigger job--like the new hinge needed for the kitchen cabinet that needs to be identified, tracked down, ordered and, oh yes, replaced. I try not to think about the whole list because it gets overwhelming. Finding and gluing one end cap, if it’s floating around, seems doable. The larger list, not so much. None of it, though, fits into today’s plan, or even this week’s. Unless the cap is around, in which case, just getting the glue and getting it done seems pretty attractive: a small job, unlikely to mushroom, and then it would be done and satisfying.... If only I can remember to ask Michael whether we have the trim piece.

While cuddling asleep last night, I wondered about all the hundreds, if not thousands, of nights when we fell asleep in exactly the same way, except that then there was a tumor growing inside my head and we didn’t know it. Shouldn’t it have felt different than regular life? Eventually, of course, it did feel different, but not in any distinctive way that was definable as a brain tumor. Shouldn’t it have felt some specific way? I suppose that’s an existential question and not one there’s time to pursue just now. My guess is that this train of thought was stimulated by the scheduling of the next MRI in April, and that in the back of my mind (if not physically in my head), I am thinking about whether it will show tumor regrowth. The last scan was clear, but I’m apparently in the highest risk group for regrowth. Once the correlation between the train of thought and the scheduling emerged, as with so many such things, I was able to go to sleep and move on. Meanwhile, onwards and upwards. Literally. Flying out later this morning for the first of the talks this week. Home tomorrow. Take care, all.