Saturday, October 31, 2009
On this trip, we stayed at one magical place, one regular-old-chain-type hotel and one hotel where it feels like the corporation that runs it has taken leave of its ethical sense. The newspapers that have travel columnists have all written at length about the weirdness in the world of hotels: budget places that have free wifi and top-end places that charge for it, I guess because they can. The hotel that left us gasping was in the latter category. Connecting to the internet was a whopping $15.00/24 hours (we declined) and the bottle of water in the room was marked at $8. Hotel breakfasts are always expensive so I rarely eat them, but even by those standards, a $25 yogurt and fruit seems pretty excessive--oh yes, that also included coffee. Those prices are all in Canadian dollars, but still.
On this trip, I’ve been reading a book someone recommended to me for consideration as a text for my MBA leadership and ethics class, The Ethical Executive. It’s an interesting book, bringing to bear what we know about psychological pitfall and cognitive errors to help explain some of the ways we end up with mind-boggling business frauds. There’s much of value in it for those heading out into the world of work in business, but I haven’t yet figured out any good way to use it in my course; I’m still mulling. The book did make me think, though, about the hotel we stayed in that seemed so proud of its excessive charges. It’s like a secret club where everyone is making fun of the less fortunate, and the shared insider knowledge seems to be that it’s all fine, because the expense account is paying for it anyway.
Maybe it’s because I’ve always worked for a public university, but I always treat traveling on someone else’s money like it’s my own and make decisions accordingly. If I wouldn’t spend my own money for something, I won’t buy it on someone else’s nickel, either. The experience made me wonder, if the corporation treats its paying clients with ill-disguised and contemptuous exploitation, how does it treat its employees? Out of curiosity, I think I’ll do a little digging to see what’s out there in the blogosphere about this company. I’m guessing the hotel we stayed in is operated under a franchise license, but I could be wrong. The whole thing left a bad taste in our mouths and gave me a creepy feeling, though the room was quiet, had good temperature control, nice bedding and a great soaking bathtub, which is a homerun in hotel terms otherwise.
Is this all too fanciful? Am I reading too much into a short experience at the end of a long day? Maybe. But I do mean to do some research about the company that owns that hotel, whatever it might be. It just didn’t feel right.
What with the hotel’s charge and us spending the afternoon touring the wine country, we were out of electronic contact for a longer period than I can recall in years. We’d both turned off our phones when we crossed the border due to ATT’s exorbitant international roaming rates and we were adapting to that, but being away from email for so long felt almost exotic. We survived and are now back in contact. Happy weekend to all.
Thursday, October 29, 2009
Tomorrow, other than grading and email, I’m taking the day totally off. Michael has a list of vineyards to visit, so we’re going adventuring. After finishing today (long, long day), we had a lovely dinner at a great chef-owned restaurant, and enjoyed our time together. I’m not sure what I expected (if I ever did) from a relationship of this duration, but I’m positive that such deep and abiding happiness in the presence of another wasn’t in my consciousness. As is our habit, we did a round-up of our domain and feel pretty good about how it all stands: girls good, finances fine, meaningful work we enjoy, great friends and house: life is good.
In many ways, as odd as this might sound, having a brain tumor has brought into sharp focus how great our life is together. In that light, the limitations with which I struggle seem a small price to pay for coming to appreciate the quality of life we enjoy. It seems almost churlish to wish for more. I do, though.
Monday, October 26, 2009
A series of decisions that each seemed completely reasonable at the time combined badly yesterday, and reinforced the Endocrine Guy’s wisdom that even the small doses of prednisone I’m taking are making a big difference. We’ve been monitoring the tapering on a weekly basis, seeking a ten percent reduction each week. Since this week brings the last travel of the year (yeah!!!), and today’s a teaching day, we agreed that I’d take the current lowest dose on both Saturday and Sunday. Saturday was fine, but yesterday, I hit the wall about 8 p.m. and was then completely, totally out of energy. I felt that way all through the night and until I took today’s dose, really. It was odd to know that I was sleeping and still feeling completely depleted, but that sensation as there. So, we’ve learned something more about these balancing acts, and in retrospect, it’s hard to imagine why we didn’t anticipate the effect. But, we didn’t, so on we go.
Lots to do before teaching today to tidy things up before leaving tomorrow. More later.
Saturday, October 24, 2009
We had the consultation Thursday with Dr.Thoughtful and my brother’s endocrine specialist pal. While there wasn’t any earth-shattering breakthrough, it did confirm that our current experiment is likely the best one for now. Endocrine Guy suggested that after we’ve completed our current tapering regime, because cortisol is diurnal in natural settings, we should measure morning and afternoon cortisol levels to detect whether my own machinery might be starting up again, or at least functioning faintly. If it is, there should be a variance. While there’s no clear guidance out there from the research, he encouraged us to stay with the tapering and not go cold turkey. He says that coming down from the original steroid doses before and after surgery, even the low levels I’m now taking can make a huge difference in daily functioning, as the body is slow to adapt to life without artificial steroids. He also talked about the fact that his patients who’ve been andrenalectomized never feel right again, even when they’re on a twice-daily meds regime, so here’s hoping we manage to jump-start my system eventually.
Over the last week or so, as I’ve been feeling more “right” in my thinking, most of the people I’ve met with have commented that I look better than I have in recent times. I’ve been told that my color looks better, that I seem more vibrant and that my “sparkle” is back. Even Endocrine Guy, with whom we last spoke on the phone some months ago, noted that I seemed funnier and had a more apparent sense of humor than in our earlier interaction. He characterized my evolution as representing astounding changes in brain function, and seemed optimistic that there’s still reason to hope for more changes and a continuing recovery. That was nice to hear.
All things considered, things seem to be changing, and for the better. Dr. Thoughtful mused about the difficulties of assessing our progress, when we’re treating subjective symptoms such as my levels of fatigu, and how clear or muddy my thinking feels, etc. Endocrine Guy was sympathetic and reassuring: that’s the name of the game right now. At least we seem to be in the right ballpark.
The sun is shining and the most recent blood tests show that my vitamin D levels are borderline, so off I go to sit in the sun for a bit. Happy weekend to all. I haven’t heard lately from some of you who correspond most regularly--is all ok out there?
Thursday, October 22, 2009
At the same time, my brain has stopped reading fiction again. There was a small reprieve in the last few weeks where I was able to read and enjoy two or three books. In the last few days, though, the instant I begin reading, I get tired and not, well, bored, but switched off. It’s strange and it’s consistent, so with some sadness, the book has been pushed to the back shelf to try again “another later”, to use the phrase Kearney coined as a small child. Another later is a useful concept that doesn’t close doors, so we’ll see. There’s still change happening inside there, and that this interest/ability switches on at all is encouraging, so here's another thought for the “ever hopeful” column.
There are things going on in my brain while I sleep that are different now, too. I’ve always solved problems while I sleep, and that stopped over the last year. Now, it’s like the mechanism for problem-solving is gearing up, though it’s not actually working on anything real. The old pattern was that I’d loop on a problem all night, and by morning it would be clarified in a way that I could articulate better and thus start moving it to a solution path, or at least head it in a positive direction. The current pattern is that I’m looping all night on meaningless stuff--not problems, and often not anything I care very much about. It’s like the mechanism is gearing up, and not yet ready to do any real work, just practicing. This started about the time I woke up hearing Moon River in my head; Cape J pointed out that there’d been a full-page ad in the NYT that day for an Andy Williams biography and wondered if that had stimulated my sound track. We talked about it and finally decided that I’d awakened with it in my head before we brought the papers in, so probably not, though it was an enticing idea that had offered some relief. Oh well. Every night now, the solving machinery seems to practice; last night, my thoughts looped all night on something about the pool at the hotel we stayed in when we visited Shea. I have no clue why or of what possible use it was. It's strange to have recurring thoughts in which I'm not particularly interested, except as a phenomenon.
Today brings the consult with the guy who specializes in endocrine effects of brain surgery, along with Dr. Thoughtful. We’re looking forward to that, and maybe to both some illumination about this path I’m on and a new direction for the brain chemistry experiments. The steroid tapering is still underway, and my morning cortisol levels are still very low. On the other hand, there are clearly some changes underway in there, so overall, hope reigns.
Anyone have any suggestions for a great book that might be the basic text for the class I’m designing for next semester? It’s a train-the-trainers course for upper classmen to lead discussion sections of the new professional responsibility course for freshmen. I’d like to find a book that covers skills like leading discussions that is business-y and that can map to running meetings and the world of work. Any ideas?
Happy Thursday to all.
Tuesday, October 20, 2009
Meanwhile, it is a glorious fall day here and the leaves on the maple tree outside our window are almost luminous. Our spirits are doubly high as today’s news out of the university means that we’re on a path for a new chapter here, one that can only be better. Hooray!
Both Michael and I have come down with something, likely from our travels over the weekend. Or, maybe we picked it up before the trip, as yesterday’s class was full of students sniffling and sneezing; we’re in that season here. The classrooms I teach in all have hand sanitizer these days, and I carry it with me as well. The students are good-natured about my requirement that they clean their hands after they’ve been negotiating (and shaking hands) at the end of class. Yesterday, I overheard one calling her dad on the way out the door to report I make them do that and telling him she hoped he was happy and would stop worrying.
Since I’m scheduled to do a long-planned presentation today that is to be videotaped as part of the dissemination plan for a funded project, the day is going to require balancing rest and exertion. We’re both feeling under the weather, but not all the way down and no fevers, so probably not the flu. All in all, a pretty good day, made only better by this morning’s news. Cheers to all.
Sunday, October 18, 2009
Michael and I are reveling in our visit with Shea. She seems so happy and fulfilled in her new place in life. We couldn’t be happier.
We’ve strolled around, visited the college, gotten to know the area a bit, found some wonderful places to visit and eat and then, as well, faced down some navigational challenges. Friday night was bizarre, as our MapQuest directions from Shea’s dorm to the hotel were confusing and led us to circle aimlessly. At least we were all together during that segment of the trip and we had hilarious conversation in the car trying to figure it all out. Our iPhones came to the rescue, as we eventually decided to follow them rather than the written directions and that got us to our hotel. By the time we settled on that approach, though, we’d spent more time between the airport and hotel than we had in getting to the city by car and air. Frustrating. All of that vexation was ephemeral seeing Shea in situ. She is in such a good place for her right now. It’s hard to describe how deeply satisfying that is, the more so given how unsettling it was for me not being able to participate in the visits or selection process due to my own preoccupations last year.
Those preoccupations continue, of course, though we all collude to minimize and overlook them. I noticed today that Shea automatically positions herself to stabilize me in motion. Once I noticed this, it dawned on me that Michael has adapted in the same ways. In familiar places, this is not usually much of an issue, but in new places, and ones with lots of visual stimulation, I become unsteady on my feet. There was enough going on today that most of the day was rocky, so the pas de deux they perform (as does Kearney, when she’s around) was particularly obvious. This adaptation doesn’t seem like something these wonderful human beings should have to know how to do, much less do so automatically and with such caring and grace: stabilizing me doesn’t seem like a skill that fits their respective stages in life. While I know I didn’t chose it, I still feel responsible for all I’ve inserted into their lives, and little of it good. While a sense of gratitude and good fortune (luck) are my primary emotion most of the time, today’s observations tinged its satisfactions with sadness. Also, of course, some crankiness, as I’d always rather be the helper than the helped, but that isn’t new, and that I just live with, since I don’t get to choose that, either.
On a lighter note, our visit reminded me of the commentary the girls exchange with each other when we’re all together. For some reason (maybe acute observation), they characterize the interchanges Michael and I have about everyday life as squabbling. He and I don’t think about it that way, and in fact consider our daily existences to be placid and even a little saccharine, since we spend so much time appreciating how wonderful our lives together are.
While we’ve spent considerably more than thirty years together, and while our values are and always have been in synch, our thinking processes couldn’t be at greater variance. We often get to the same answers by totally different routes: we’ve never had disagreements about money or childrearing or, really, any truly important matters. We do approach everything else, from loading the dishwasher to parking, from opposite directions. We notice different things around us, respond to them in divergent ways and have opposing instincts. While our routines are pretty set, it’s still a challenge at times to reach a common ground without either of us feeling criticized. Standing back, this seems especially strange when you think about it, since we’re each other’s biggest fans. Still, Michael mulls and I act, and those impulses clash much of the time. The working-out process often involves a good deal of verbal interchange, a process we both understand and accept as simply negotiating our way through things. Still, in fairness, it’s not that hard to see how it might look like squabbling to those outside our connection, even those who have lived with it for years. At one level, when I think about it, we’d have precious little to talk about without these little negotiations, since we’re in such deep accord on the bigger things. Of course, the reality is that we’re both sufficiently socialized in such old-school ways that exposing the gush that characterizes our private existence seems unseemly.
Odd that we’re happy to bicker but not rhapsodize. Our upbringings live on--except that we seem to have managed, at least so far, to give these two special ones a foundation that doesn’t require them to live with these particular demons. Years ago, I read something by one of the Ephrons (Nora?) in which she said that her goal in parenting was to give each of her children a curable neurosis. It seemed then, and now, to be a reasonable goal. We haven’t detected any full-blown neuroses in the girls yet, but whatever quirks they have, we know they’re not ours, which is a step forward.
Tomorrow, we brunch with Shea and then travel home to papers to grade and to see how our charming dogs did in the their new care arrangement. We enjoy what they contribute to our lives and hope we’ve found a good solution for the times we want to go out and about. Happy weekend to all.
Wednesday, October 14, 2009
Yesterday had its ups and downs. The downs were literal and involved falling flat on my face after missing a curb while walking home from a meeting on campus. The spectacle I made of myself naturally had a ton of witnesses, including a person I like and respect. Her kindness in the situation cushioned it a great deal, though I could have lived without being observed conducting myself so ignominiously. A ton of other people also observed this klutziness, and all offered help. People are nice. Luckily, Michael was not far away and was able to come pick me up. My dignity was dented, my knees and shoulders got a pretty good knock, and the knees and palms lost some skin. There won’t be any lasting damage, except that, upon reflection, it evoked all the falling down I did in the years when the tumor was growing. It took several hours for me to realize that part of the jolt of the situation was the back-of-my-head worry that it’s starting all over again. Brought out into the light of day, it’s as silly as it sounds, but there it is. The demons lurk.
The ups were great: a meeting with a colleague I don’t see often enough was interesting, exciting, and just plain pleasant. There are so many wonderful people around. Ironically, one of the topics we’d discussed, interwoven with the work we’re trying to plan on a project we have underway, is the effect of major medical events and the alienation that people often feel after the fact. Chemo brain, cancer diagnoses (and treatment), etc. often leave people with a sense of alienation from their former selves, according to my colleague who works in those areas. It was an interesting perspective and helped me feel more “normal” in my continuing campaign to re-inhabit my former life.
Both before and after the pavement rendezvous, many of the to-do items got crossed off and progress generally achieved.
Sigmund’s observation yesterday about the slip/typo with deadlines/deadliness was apt and reminded me of this wonderful typo Andrew Sullivan posted the other day. Cheers.
Tuesday, October 13, 2009
The aliens inhabiting my brain are doing strange things at night. Last night, I had a series of recurring dreams with the same new sensory strength that’s been evident in recent weeks: bright colors, loud sounds, sharp odors. The dream played over and over, and then the substance would slip away. This morning, Moon River is playing in a constant loop inside my head. No recent events or interactions jump out as a possible stimulus for either experience, so a shrug and a “that’s odd” seem to be the best approach. We’re exploring how to get continued physical therapy by the simple expedient of paying for it ourselves (thanks, Doug). The importance of that is growing each day as my shoulder tightens up. We’re also lined up to talk with Dr. Thoughtful and the guy we connected with via my brother who is interested in and studying endocrine changes after brain surgery. We’re looking forward to that in the hopes that we might get a bit more guidance than our current trial-and-error experiments.
Today was originally set aside for writing, and I’ve got some pieces outlined that want writing, but my inbox is overflowing and a whole slew of student recommendations have pressing deadliness, so the writing must wait. Here’s hoping it fits in by afternoon. The economy is decimating employment for lawyers, for both law students and for alums who have gone into Big Law. Seeing what’s happening to truly talented people is painful. There’s a huge shift going on in legal circles and I fear we’re nowhere near the end of the process. My part is to try to write letters of recommendation that help people find either new ventures or land as softly as possible.
The in-box and the letters of recommendation are calling... More later.
Saturday, October 10, 2009
My scalp still has areas of strange sensations, balancing activities with available energy/coping with fatigue are still issues, and my right arm/shoulder are still not right. Some cognitive effects are still visible in terms of little gaps here and there, memory problems, and the strange sequencing of what I can do when: right now, sudoku is off and reading is on. I continue to feel lucky, and work to focus on the things that are most important: my children still have a mother, I can still work and maintain a broad range of projects, I have work that is flexible enough to accommodate my limitations and play to my strengths, there are pretty good ways to compensate for my shortcomings.
I saw a little girl on an airplane the other day who, while she didn’t resemble in the slightest either of our girls as a child, brought back memories of that lovely time of our lives as parents. She was interested in all around her, at that stage where she is sounding out letters and working to decode words, and had that air of wonder that happy children do... At the time, seeing her stimulated a train of thought and connections that, in my fatigue today, are lost. I hope the connections are lost only temporarily, as they were interesting and seemed at the time to hold the key to something I’ve been wondering about. Time will tell if the insight will return. It may take a while, as today has more obligations on campus and so the needed rest may not come for a while yet.
After I spent most of the week reading, we watched this week’s NCIS episode on line last night, as well as trying out NCIS LA (yuck). My dreams are completely different at night after reading (or working) in the evening than they are after watching video before we go to bed. It makes sense and I’m feeling a little slow only to be noticing that now. Later in the weekend, when there’s some time, I hope to chat with Dr. Google about this, to see what effects are known and understood. I wonder how much that explains some of the unusual character of the last few months’ dreams? It cannot be a full explanation, as I reconstruct our activities, but I’m now interested in exploring this topic a bit.
Need to run: ethics events all morning. The view out my window is the very best of autumn in Illinois. The leaves are changing and the colors are beautiful in the morning sunshine. Enjoy October, wherever you are.
Friday, October 9, 2009
Feeling my way along, adapting, I’ve realized that I’m spending a lot of time trying to gain some perspective on the difference between how I feel internally and how I look when I’m out and about in the world, which is fine. Control freaks like me like to name things, understand them, label them and be able to discuss them as a way of, well, asserting some control over them. It would be hard to ignore that is and has been my approach to this whole adventure. My new label for this felt harsh at first but it’s been helping me: I’ve been surgically altered. The results of my alternation are that I’ve become a homebody, with less energy than before, but other than that, I’m still the essential me. However goofy this approach is, it’s helping me achieve a better equilibrium and advance with more daily cheer. That’s about all that I ask most days, so for now, it works for me.
What doesn’t work is that the insurance company has refused any more physical therapy. That means that we now must figure out some way to stay ahead of my shoulder issues. I have regained almost full control of the arm and shoulder, but the shoulder still takes odd detours in moving my arm from one place to an other, and both shoulder and neck sometimes lock up. The homework exercises help to keep it all loose, but are not enough in and of themselves. We’re trying to find some approach that will replace the missing PT. Massage, maybe? That’s next week’s task.
The week’s exertions have left me at a low ebb. Speaking of that, there’s a new advice column posted at insidehighered.com. Happily, it’s Friday and the weekend awaits. Cheers to all.
Monday, October 5, 2009
Thinking about it, I am concluding that my recent video obsession is part of my brain rebuilding its ability to follow a narrative. I’m not sure why I think this and cannot really articulate a basis for the growing feeling of conviction. It just feels that way. As backstory to this, I have watched more video in this last year than in the entire rest of my life combined. Since Shea left for college, this trend has accelerated. At first, my thought was that my desire to watch something in the evenings was a a combination of low energy from the steroid tapering and our transitional response to reshaping our lives in the wake of Shea’s departure.
As usual, Michael has been a good sport about this, though it represents a fairly major shift in our time and activities. Never before have we watched anything other than on a weekend movie night, and then in a fairly restricted way. Since Shea left, I’ve watched all of NCIS, most of it on weekday evenings, though we’ve usually done three and sometimes four episodes on weekend nights. At first, with my energy down from the brain chemistry experiments, that was about all that I could manage after a day of work. Then, something about the storyline hooked me and I would cajole Michael every evening into watching a couple of episodes. Now that I’ve finished it, the drive to watch something is gone and my thinking and my brain feel different. It’s hard to describe. Something is different, though. I ordered two books from Amazon this weekend, and am anxious to see, when they arrive, if I can read again now. Of course, I have a bunch of books I’ve never started (and some I’ve never finished) on my Kindle and could experiment with them, but today is a teaching day so I’m holding off at least until this evening to play with this a bit. I travel tomorrow and Wednesday and I’m hoping that Amazon has its best game on, so I have something to take with me for this experiment.
I’m realistic enough to know that, even if the ability is returning, it might not stay. That’s happened before, two or three times. I’d be interested in reading, read a couple of books and then the capacity would vanish again. We’ll see. As I said, it feels different this time.
In another weirdness, with Shea gone, the dogs are changing all of their habits, too. For the first few weeks after she left, both dogs would pile into one crate together, which is a tight fit given their sizes. That phase passed, but since then, they seem to have switched which crate and pad is which, and their traditional sleeping places in our bedroom have changed. They still seem in a fluid state of redefining their respective spaces. It’s weird to watch. Maybe it's the universe that's weird and not just my brain? I suspect not.
Gotta go get ready for the week. We send greetings and good wishes.
Sunday, October 4, 2009
From the very first consultation with the neurosurgeon, we were warned that the recovery would take a year or more. There were even conversations that talked about eighteen to twenty-four months, though the year benchmark was the most frequently recurring one. Following the blogs of other meningioma-craniotomy patients who were somewhat ahead of me in their own adventures, it seemed like the year mark was a watershed. For me, though, it’s been a hard anniversary. While this recovery is very far along and there are many (many) blessings to count, it’s far from what it would be nice to hope will be the finish line. The mismatch between my expectations and reality caused a slump in my outlook and attitude. As you'll have noticed, I slowed down on my writing here. Coupled with a virus of some sort that put us both under the weather, I somehow lost hold of my will and ability to find the best in the situation. That wasn’t fun and reinforces its importance.
Poor Michael bore the brunt of this yesterday, when I was not only glum but grumpy all day. I didn’t like how it felt and neither did he, much. Today, then brings a new resolve to focus on the good parts and to appreciate the improvements as they come. Nothing is guaranteed so we might as well be happy about the positive parts--of which there have been and continue to be many. It helps that the sun is shining today after yesterday’s grey and rain. Plus, the university has a new interim president, announced yesterday, who can only improve what’s been a dreadful situation for too long now. There’s more to go there, too, and it feels like there are good reasons to hope that will happen.
Today, then, brings a renewed resolve to enjoy the sunshine, appreciate the wonderful people who inhabit my life, including this semester's great students, as well as to generally seek joy. Happy is better than grumpy. It’s a state of mind and a habit as much as anything else. Here’s to getting back into the groove.
Friday, October 2, 2009
We saw Dr. Thoughtful on Tuesday and his main message was that I’m well within the regular recovery zone and I should be patient. Me, I figure the surgery was more than a year ago and I’m ready to cross the recovery off my list. Not so fast, though. He is going to consult with the endocrine guy one of my brothers knows who now specializes in endocrine changes after brain surgery. We’ll see if that will help us refine the trial-and-error chemistry experiments we’re doing in my brain.
Happy birthday to Michael, love of my life.