Wednesday, December 31, 2008

And That’s Why We Have Friends… Duh, Tina

After yesterday’s post, my dear friend J wrote a note suggesting in the nicest, most loving possible way an additional explanation for why I’ve been tearing up so much lately. I attributed it to the hormonal changes catalyzed by the surgery… which is surely a big element in what is going on. However, J is also right, that I need to face up to the grieving part of all of this. Here’s what her note said, in part:

I've read your last few blog entries, and have thought: "should I call?"..."should I comment?" but have each time concluded that I should wait til you "found" the missing piece of the puzzle yourself. Until now.

So, have you thought of this? During this "down time," when you have fewer demands on your time, you may be grieving the many losses and changes you've experienced this year and in the past, and those you anticipate in the future. You've mentioned some: your surgery and recovery, acceptance of your new "self" (even if, in time, your energy returns and you have no residual symptoms), father's death .. (and memories of your mother's death), …, and the pending departure of AS for college. These are each really, really big issues. And there are probably more that I'm not aware of or have forgotten.

After what you've been through, grieving is a normal, fully appropriate thing to do...even if it means tearing up during episodes of West Wing (which by the way I abandoned early in the first season, when I became thoroughly annoyed by the tracking shots...actors walking toward the camera, doors opening and closing, talking and being so so clever.)

My guess is that you have been pushing back on the grief for a while, keeping busy, focusing elsewhere, trying to remember how lucky you are and that the situation could be much worse...but it's finally here. I may be wrong, of course. I have been once or twice before....

Bingo. I should have seen this sooner, and that I didn’t is evidence of those powerful coping and denial skills that have contributed to me getting this far. And now it’s time to deal with this as well. I’ve said a lot of times here that the support and caring from this community of friends has been sustaining. Here it is again. My experience in life has been that the first step to change, to dealing with something, to being who I want to be, is always to see the problem clearly and own up to the part of it that I own. And in this, J couldn’t have been more on the mark. I don’t much like grieving (does anybody?) and I also know through experience, that it doesn’t get any better to try to ignore it or pretend it is not happening.

On top of the loving wisdom of the note, Michael felt vindicated because he agrees completely with J about the tracking shots, which he also finds distracting and annoying. They don’t bother me. Right now, I’m marinating in West Wing during my downtime and enjoying the so, so clever dialogue. After reading J’s note, interestingly, none of what I watched last night made me tear up.

Tuesday, December 30, 2008

I Cry a Lot

Having something to fight, as opposed to something simply to endure, is much more my style. While this adventure was in its acute stages, there was a lot to fight. Now, though, as I’ve written before, as this recovery proceeds at its own pace, it feels more like something to endure. For the first time, as well, I’m beginning to be worried that the current level of capacity—significantly diminished from what I think of as the baseline—is likely to be permanent. Michael disagrees, and argues that what’s going on now is all an artifact of reduced stamina. It would be nice if he’s right. For a lot of reasons, including that while still coming to terms with the fact that this is simply going to take a while, in retrospect it’s pretty clear that one of my responses was to try to pick fights with him. He’s good natured and nice enough that most of my efforts were futile. He can almost always make me laugh—and he laughs at a lot of stuff that a lesser person would take up as bait. When he wasn’t laughing, his general response was to ask if I was especially tired or something and not take it personally. Shea is also a lot like this and I wish I could learn to be more like them!

Shea has gone off to visit friends from camp and is having a grand time. We miss her a lot around the house. It does make for a really quiet down-time between the semesters, though, and I’ve managed to inch ahead some projects. There’s more to do and still more quiet time ahead so I’m hopeful that even in this reduced state, with minimal hours of true thinking clarity every day, the break will end with some serious accomplishments.

In the quiet, one of the things we’ve been doing is following up on John’s recommendation of West Wing. He’d talked it before, and it came up again as we were discussing Barack Obama’s choice to use the Lincoln inaugural bible. (How cool is that, anyway?) We’ve hugely enjoyed watching this, practically doubling our exposure to popular culture and TV series in the process. We’re feeling very hip and plugged in. So we came to it years later than the rest of the world, we’re here now…. Among everything else to like about this series (the writing, especially) is how the characters are consistently shown disagreeing with each other with tremendous overall civility, even when they’re passionate about the topic and their differences. They apologize for transgressions and continue positive working relationships. The general level of self-restraint modeled during disagreements is terrific. It would have been easy to go for drama by making this workplace a scheming nasty one, and instead, the show consistently depicts a large group of people working hard and focused on larger issues and principles and finds its drama in other places. Admirable. More workplace role models like this would go a long way in this world.

Meanwhile, one side-effect of this whole medical adventure—and the hormonal disruptions it has apparently triggered—is that I cry more than ever before in my entire life. At least this isn’t full-out weeping, more like tearing up. I cry reading the newspaper, or watching West Wing or hearing a story on the radio. It’s bizarre and I don’t care much for it. It feels like permanent PMS, except of course that’s it’s accompanied by hot flashes. That’s really fun. Presumably, this too will pass. Sooner would be better than later. The surgeon’s response, when queried, is that this is not unheard of, though not one of the most common responses. His speculation was that maybe it was the general stress and strain of brain surgery and predicts it will die down over time, like the other lingering symptoms.

On that front, I’m still puzzled by why the different parts of the incision heal so differently. For most of the length of the thing, you’d be hard pressed to find its location either visually or by feel. (You can easily feel the dip in my skill where the initial drill hole was made, though.) There are stretches of maybe cumulatively two inches, that are still raised, a bit inflamed and lagging way behind the other parts in the healing process. We keep putting vitamin E oil on them, and they do keep improving, bit by bit. The area of the scalp that’s tender continues to shrink, though it’s also still noticeable.

Kate commented the other day on the interconnection of symptoms: tiredness begetting less sharpness, making it take longer to figure it out when I’ve overdone. Check. Likely, all the glooms I’m experiencing now are also interrelated, on top of the regular seasonal stuff I always experience, plus the effects of less sunshine. Trying to joggle myself loose, I went and worked out a bit and tackled a task I’ve been dreading. I feel better from both: the exercise got my blood moving a bit and having the odious task completely finished feels great. Predictably, the job didn’t take all that long: I probably spent more time thinking about how much I didn’t want to do it than it took to tackle and complete it.

We’re enjoying tremendously the annual letters we’re receiving this year. We’ve both been struck (astonished and gratified) by the number of people who commented on reading this blog regularly. The increased connections with and to all of you has been the silver lining to this experience in every sense. Thanks for being out there, grand people.

The sun is shining here and it’s a beautiful day. We hope it is where you are, too.

Saturday, December 27, 2008

Changing Brain Habits

Slowly, it is becoming clear that my thinking habits of a lifetime are shifting. There is no way of telling whether this is temporary or permanent, but the effects are real enough.

One of my skills has always been to synthesize and organize lots of information and then to communicate it clearly. Through my adult work life, my most productive thinking times of day—the most creative, most useful and most likely to achieve something like flow—have been at the end of the day, from about 4-7 p.m. That’s when, after a day full of interaction, stimulation and events, I could pull everything together, make notes , write things up, organize for the next day, and generate the largest quantities of the most useful work. My best teaching has always been late afternoon, and my classes are all scheduled around knowing that I am sharpest at that time of day.

Now, though, I’m finding that my most productive times are early in the morning. This is disconcerting, because I’ve never been a morning person. I’ve always been slow to wake up and slow to click into gear after up and moving. I’d often find myself coming out of a fog mid-morning without much conscious awareness of what came before. I once took a five-day-a-week 8 a.m. law class in summer school where the professor started each class with a corny joke. Studying for the final, I discovered that all summer, in some form of note-taking auto-pilot in my morning fog, I’d recorded pretty much everything that was said through every class—including the corny joke every morning. It did at least lace the studying for the final with some groaning levity.

Nothing about any part of my self-image or habits is geared to being a morning thinker. That, however, is the least of the challenges this seismic shift presents. The most pressing issue is that, at least for now, morning seems to be the only time that I am getting any real thinking done all day. I’m hopeful that will change as this recovery continues, but I’m coming to realize that I’d better prepare for the eventuality that it might not be. This means rethinking deeply ingrained habits, some of them so set that I was not even fully aware of them. For example, it means rethinking how I schedule all my therapy appointments, as I’ve reflexively put those in the morning foggy times, which means that, at least as scheduled, they disrupt the only thinking time I’m allotted each day. Tasks that I’ve always just tackled in the morning, things that need to get done but don’t take deep thought, just habit, I turn to in the morning, and again, they are consuming what is now a limited and valuable resource. Becoming aware of and then changing these habits is taking more work than I’d anticipated. I am learning interesting things about myself in the process, though I cannot say they are things I’d ever aspired to learn. I’m trying to make the best of it and find something valuable in the process.

On another front, I’m also slowly awakening to the fact that all the rhapsodizing I did about my newfound trust in my body is just so much hooey. As I experience new aches and pains, I’m dismissing them just as easily and quickly as I rationalized, explained and ignored symptoms that were, in retrospect, tumor effects. I’ve already had a brain tumor, however unlikely that might be, and all this new stuff isn’t that, so my thinking goes. Thus, whatever comes along now is likely to be just the creakiness of aging, or my hypochondria, etc. Sigh. Thinking habits of a lifetime are hard to overcome! Somewhere along the way, I read that it takes between six weeks and six months of practice for adults to acquire and then ingrain new habits. Of course, noticing the old ones and deciding to tackle them is the first step, so I take some small consolation that at least, maybe, I’m on the path to real change. I haven’t found a way to get excited about that yet.

Friday, December 26, 2008

Relearning the Same Old Lesson. Again.

It started innocently enough. Everyone in the house was asleep, it was quiet, I was awake and it seemed to be the perfect time to clean off my desk ,recycle all the extra paper from the completed semester and generally reorganize. One thing led to another and, before you know it, there was quite a to-do list going from items uncovered in the tidying process and stimulated by thinking about next steps. It felt good to be getting things done, so on I worked.

Plus, did you notice, it was also Christmas-time? While I have gotten a lot better over the years, and really work on letting go of the complex laws (these are far stronger than mere rules) in my head about how Christmas “should” be and things I “must” do to make it that way, getting the balance right is an ongoing struggle. That my mother died shortly after Christmas when I was 12 increases the complexities of the season for me. After many (seven? eight?) hours of really satisfying work, it was time to turn to Christmas baking, table setting, last-minute arrangements, etc. Those went well, too. As an added bonus, we even found the missing presents purchased this summer.

The upshot, though, of this productivity is that I overdid it yet again. Back came the headaches, out went the balance, the arm started giving out, the whole shebang. The worst part is what these regressions do for my cognitive functions. Usually, the idea for a first line of a post here or the title, or the theme, come to me as I’m falling asleep. When I’m functioning well, those ideas are still with me in the morning. (In fact, they usually improve and get extended over night, coming and going from my dreams and in waking moments.) After I’ve pushed past reasonable limits, though, my short-term memory collapses and I have trouble making mental connections. I hate that the most of all the other effects. To my further chagrin, it took me most of a day to figure out what was going on. It’s not like I haven’t been claiming to be learning this exact, very same lesson now for weeks. If not months. In retrospect, I can pick out the warning signals I should have caught in real time. My hope is that this unpleasant reminder will serve a positive purpose in the future.

The good news is that accepting the reality and retreating to bed with good meds seem to be righting the ship again. The frustration with myself, and the residual embarrassment, linger.

On the other hand, we had a grand and low-key holiday with some unexpected grace points. Our traditional Christmas Eve dinner was disrupted by weather that kept our usual crew from gathering, so we put out an invitation to stranded law students. The resulting evening was a pleasure, with a student who had been trying to fly to Seattle since Monday taking us up on the offer. We’re hoping his rescheduled flights yesterday finally got him home. Michael made a great dinner—trying a new way to make the meat that was a huge success—and we all played Banangrams after dessert. It was a great evening and Michael, Shea and I all had a nice day together yesterday. Shea got a puzzle for Christmas that we started, and unlike my summer experiences, I can work puzzles again!

Tuesday, December 23, 2008

This and That: Link to News Gazette tumor story (title amended later)

By popular demand (well, three requests), here’s the URL for the local paper’s story on this medical adventure:

As you’ll see, it’s mostly about all of you and all that you did to help us all through this event.

Cheers to all.

Monday, December 22, 2008

Counting Blessings

We had a wonderful weekend celebrating an early Christmas with Kearney and Brad, and are now settled in for a very quiet Christmas at home. While the news seems focused on pointing out how perilous are our times, we see a world inhabited by endlessly kind and nice people. We are happy and hopeful.

Of course, as I was telling a friend on the telephone the other day that I was working on an ethics presentation, his instant response was “You’re from Illinois: you’re not allowed to talk about ethics!” Little did he know that I am inured to this, as one of the observations I make repeatedly in my standard ethics talk is that I’m from Illinois, a state in which the standard form for some grants from the state requires affirmative certification that no state officials have been bribed in the application process. Even so, even with this governor and the complete standstill in state government, even with all the cynicism and rank stupidity the news brings every day, we observe the basic goodness of those around us, and we give thanks.

The local paper ran a story on my medical adventure yesterday, which brought an interesting deluge of email. One of the cohort of kids who were “tracked” in school with me from kindergarten on wrote because his mother had sent him a link to the story, for example. Virtually all of the mail had some positive and interesting message.

This morning, the incision has taken another leap in its improvement, with two of what had been four remaining inflamed spots seeming to have moved along in the healing process. It’s always a great start to a day when we have one of these leaps forward with the incision site. Some of the email in response to the article brought stories of others who have had similar experiences—or much worse. That all brought to mind the thought that’s been clattering around for some time about the relative differences of the acute and chronic stages of adventures like this. The acute phase is in many ways easier to handle, because there’s so much going on, and it’s so new and there just aren’t choices about what to do. The immediate requirement, however messy, is always pressing for the next step. The chronic phase, where you settle in for the long haul, and where the everydayness must be accommodated, is harder. Not only because it’s less dramatic and pressing, but because by the time it’s become a chronic condition, it’s boring to live, boring to talk about and boring for all those who care, no matter how deeply. I suppose it’s related to compassion fatigue or information overload: it’s just hard to sustain after something is months along. This all makes me think that it’s time to go out and investigate a bit what kind of organizations are providing support for those coping with chronic conditions and see what kinds of needs they might have to which we could contribute.

Now that the semester break is officially here, and now that we’re home and hunkered down for the duration, it’s time to think about Christmas cards, cookies, baking, and a puzzle to do with Shea. Our game for this season, we think, is Bananagrams, a fun crossword game, with “hands” that go quickly. Check it out if you like word games. Best wishes to all for a peaceful and happy week.

Saturday, December 20, 2008


We seem to be sliding from Part Five into Part Six: up until recently, there was not much choice about what to do. Most days were spent either asleep or doing recovery-related activities like the six appointments a week for various forms of therapy. As I continue to get stronger, more choices have opened up. It all brings to mind the (vastly more complex) theory in Barry Schwartz’s Paradox of Choice, essentially that having too many choices is exhausting and eventually depletes psychological well-being.

Clearly, my situation is a far cry from that. At the same time, there is something about the more restricted set of choices of Parts Two through Four that were easier. A tremendous amount of time now seems to be spent trying to predict how much energy I’ll have, balancing as I go along, and otherwise focusing on picking and choosing activities. From the beginning, we’ve been told that it would take between a year and two years to recover fully from brain surgery. This time frame has been consistently reinforced by the comments of those we know (or are directed to) who have had experiences like this one. The reality of restricted energy is boring. There are days when it makes me cranky, which immediately makes me feel like a total ingrate, because of how profoundly lucky we have been, from the first instant to now. Even keeping a balanced perspective takes energy!

Other than the ongoing shoulder and balance issues, the primary remaining effect from the surgery is the state of the incision scar. I continue to appreciate my buckwheat pillow (thank you, pillow concierge), as while much of the scar has completely disappeared, there remain three or four mildly inflamed areas that are quite sore. The surgeon told us at the recent check-up he thinks the incision looks good and about as expected. The inflamed bits seem to be standard for this state of recovery. The sensitive area of my scalp is vastly smaller than it was previously, but there is still a region that’s not right. The ability to punch a dent in the buckwheat pillow so those tender areas never touch is grand.

Finishing the marathon semester required serious exertion, so in among the week’s tasks of mopping up loose ends and excavating my desk, sleeping was my other major activity. More rest and a very low-key, loving Christmas are now the main agenda. It would be really nice if we could remember where we put the missing Christmas presents: items I bought on vacation and put “in a really safe place” are completely AWOL. It’s hard to tell what combination this might be of senioritis, overload, or not being sufficiently organized to note where we stored things. Alternatively, we had some basement organization work underway at one point, and it’s also possible that we simply outsmarted ourselves by starting a new organization system that was interrupted by the deluge of the medical adventure that followed. Whatever the cause, it’s deeply aggravating that we have very cool gifts we cannot find. We wake up in the night and exchange ideas, none of which have yet been fruitful. We’ll keep at it, and eventually, they’ll surface. Sooner would be better than later, but at this point, just finding the darn stuff would be gratifying.

Happy weekend. May it be as peaceful for you as we are planning for ours to be.

Tuesday, December 16, 2008

RIP, Fall Semester 2008

Done! Grades turned in, last talk given. Good-bye, Fall Semester 2008—and not a second too soon. It’s been a memorable semester and seeing the back of it is a good feeling.

Predominant among the good feelings is a strong strand of gratitude: it wouldn’t have happened without so much support and help from so many. Thank you all. There are lots of loose ends, of course, and they’ll take some time and energy, but nothing like what it took to get to this moment. I’m looking forward to a quiet semester break, resting, tidying up and concentrating on the book project. It would be grand to be able to pull two chapters together over this break, though I don’t know if that’s a realistic goal. In part, that turns on how many of the bits and pieces I’ve accumulated are usable and how many of them fit together. Most of all, though, I just want to stop for a while and consolidate the progress achieved so far in this recovery. Shea and I always do a big puzzle over the break and some quiet family time will be a wonderful thing.

Going forward, it has becoming clearer just how careful I’m going to have to be for some time. My stamina is strong at home, with great productivity. Going out in the world, though, consumes energy in ways that are not always obvious. Sticking to slow hare-dom as the steady state doesn’t come naturally, and I haven’t really figured out how to manage it properly or even to really understand it. Some days, I wildly overdo with a schedule that, on paper, looks realistic, and other days, I undershoot. Even in hindsight, it’s not always easy to tell the two apart or figure out the factors that make the difference.

Some advice shared by C after a major medical event in her life is relevant here: she warned about what it’s like to lose several months of your life. While tremendous assistance from a lot of people kept my classes going this semester, most of the other areas of my life experienced three months of almost total shutdown. Picking up their strands, trying to remember where things stood, assess what’s required next, etc., sometimes in and of itself takes tremendous quantities of energy. Somehow, I have to figure out how to hold that thought and factor it into my goals.

One thing that will help is that the course of physical therapy will be ending tomorrow, and thus will cut down on the number of standing appointments every week. So far, it looks like we will not need to seek new insurance approval for a continuation, as the original goals have largely been achieved. Much of what comes next in terms of continuing work on balance will shift into my strength training regimen. It’s not so clear how much longer occupational therapy will last: we seem to have hit a plateau and just need to keep plodding away.

When I was growing up, looking for patterns in behavior was a mainstay of family life, though I’m not now sure who brought that to the table. It was usually a bad thing to have a pattern of conduct described, as they usually turned into pejorative labels: Tina has a tendency to x, y or z. Carol likes crises. That kind of thing. Generally, I try to resist the habit, but all the same, it was a little startling to realize that recent decade turns in my life have involved major medical events: my gallbladder came out at forty and a brain tumor at fifty. Two events do not make a pattern, though, so I’m not going to fret about what sixty may bring. At least for now.

To celebrate the end of the semester, I slept in this morning. That felt great. I’ve done my morning exercises, read the papers and answered student emails about grades. On to the next thing. Slowly, deliberately, and with as much grace as I can muster. Happy Tuesday to all.

Saturday, December 13, 2008

Revising Self Image

Slowly, the realization is dawning that my self-image of past years contains a number of elements that were tumor-related, not intrinsic parts of my personhood. For example, “Tina is clumsy” is likely more of a tumor effect than a foundation truth. I’ve never been the world’s most coordinated, graceful person. This is constantly emphasized because I live with some on that side of the line, and there’s a big difference between their natural abilities and mine, but I’m also not the total klutz those years suggested. Many of the vexing, unexplainable, intermittent physical problems of that time—sore shoulders, headaches, odd fatigue, inability to do some exercises that involved moving my head in certain ways because it was painful—were not my imagination, wimphood or some form of weird hypochondria. In fact, not to be too self-congratulatory, in retrospect, I’d have to award myself at least a passing grade for dealing with what came along with moderate grace.

This all means (again) that I should be less hard on myself, more trusting of signals my body sends and generally more accepting. In some ways, this produces a vertigo of perception about the past few years. I’m still not sure how I feel about it.

Otherwise, the end of the fall semester is in sight: I successfully finished my final talk of the year yesterday. I was worried about it to the point that I had anxiety dreams the night before: missed getting off at the correct train stop, so I was late for the talk; couldn’t find any formal presentation clothes, so had to go in blue jeans; wrote a talk on the wrong topic…. you name it. Once there, though, it all went well. The group meetings were substantive and interesting and the talk worked well with an engaged audience. Whew.

For family Friday Movie Night, we watched several episodes of Forty Something, a Hugh Laurie production. (He starred and directed.) There were multiple places we were all laughing out loud, which was just the ticket last night. Shea loves British comedy, and Fry and Laurie particularly, so we’re watching our way through their work over time. If you like anything in the genre, this is worth watching. There are only six episodes, as it’s evidently an adaptation of a book; later, we’ll track that down as well. Am I the only one who thinks their names are completely backwards? I think the round-faced guy should be Hugh and the skinny one should be Stephen. Shea is mystified by this conviction of mine, but it persists over time.

There are only have five more papers to read and score, plus mopping up loose ends and calculating final grades for the final class. With any luck, I’ll get that done today and tomorrow will bring baking Christmas cookies with Shea. I’m really, really ready for that!

Turning to thinking about the holidays, Kearney and Brad are out of vacation time for traveling this year (due to time with us on vacation, time here for my surgery, and time here when my dad died), so we’ll try to go see them at least for a weekend. Michael and Shea will go cut down a tree today, continuing the tradition the girls established with Ernie so many years ago. We have stuck with the last tree farm Ernie selected, even though we know that he often switched from year to year, based on his scouting over the summer and his judgments each year about the “superior” trees each year. He reverted to this farm often enough that we feel it would have his approval. They will call Kearney when they select the tree so she can be involved, even from her distance. Shea is a big believer in the school of “more is more,” so while I’m ready for slightly smaller trees than we’ve had in the past, I expect that this year will again bring us a behemoth. At least now that she’s older, more the physical labor of dealing with the massive trees is hers, so she’s more involved in the cost-benefit analysis of “even bigger!”

More as soon as the semester is truly over. The finish line is in sight. It’s a good feeling.

Wednesday, December 10, 2008

Three Month Anniversary

Today marks three months from brain surgery. Put in that light, my condition and progress have been simply amazing. Looking at the tumor scans again this morning highlights how very, very lucky I have been, not only in the physical sense, but also in the loving community surrounding us. That thing was enormous. It’s still a bit hard to grasp that it was occupying part of my brain. Jill’s observation, early on, that my brain might have betrayed me, but not my mind, was a hugely important perspective and provided balance through the whole adventure.

At three months out, a quick summary is that I’ve hit a bit of a plateau in recovery, though the plateau is at a very high altitude. Most of what follows has been said here before. That’s the good news, if you can take it that way. We are.

I am almost fully functional, say 85-90% of “normal,” whatever that is. I’m still doing OT and PT each twice a week, though probably (we hope) nearing the end of each. My stamina is intermittent and lower than where I’d like to be. At home, I can work all day without flagging; out in the world, it is unpredictable as to when the energy will just end. This can be frustrating, but can also be managed with some thought. When tired, both my balance and full use of my right arm are compromised. I’m building back up on cardio exercise, trying to add 30 seconds or a minute every day on the treadmill. The incision and scalp are healing. The area of the scalp that remains "boggy" and just plain strange is much smaller than it was, down to the the size of my palm. Headaches are intermittent and low-enough level that it’s rare that some kind of analgesic (or narcotic) are necessary: most of the time, I’m still drug free. (And still laughing about the lunch encounter.) All in all, things are good. Even great. If I never improve from where I am now, there is a good life to be lived in this state. And, as before, more improvement is both possible and expected.

As to conclusions about this process, I’d say that patience is an acquired virtue, and it still seems overrated to me. On the other hand, it’s hard to overstate the importance of a good sense of humor and the ability to laugh at myself. And nothing can even come close to the value of loving friends.

We are so thankful for:

• Paul Lauterbur’s research making the MRI technology possible for the diagnosis and aiding the precision surgery
• a benign tumor, in an accessible place, not entangled with my brain, and that was completely removed
• Bill Olivero’s surgical skill making that possible, as well as his tremendous humanity through this process
• great care by Carle nurses and other medical folks
• hardy pioneer ancestors and a strong constitution
• Mettler therapists and trainers: OT, PT, strength training, all supporting this recovery
• flexible work that permitted me to do much of it from home in between naps
• Amy Gajda and Laura Clower, incredible friends and colleagues who helped get my classes through the semester by stepping in to cover the missed classes and supporting my graduated return to teaching
• wonderful students, whose grace, charm, kindness and good will made all difficult things possible this semester
• hugely understanding collaborators who accommodated my absence and were understanding and helpful throughout
• funny movies, podcasts and other occasions for laughter
• cards, notes, songs, caring and support provided by you and our community, constantly encouraging me and us through the troughs of this and celebrating the progress, cheering it on

Most of all, that we all have each other. Everything about this process has reinforced the fundamental truth of the fact that the deeply meaningful parts of life are provided by our human connections. Thanks again for being out there.

Back to the final segment of grading. This is the last lap of a semester that has many characteristics of a marathon. It’s had pain, exhilaration, blisters, high moments and low. The finish line is a most welcome sight.

Sunday, December 7, 2008

Planting My Face

Twice in the last two days, I have tripped and fallen flat on my face. Michael called this “planting my face,” which was a new one for me. It was certainly an accurate description of my two events, as each involved landing flat out with my face on the sidewalk (first time) or floor (second time). Ouch. Our operating theory is that this has been a combination of bad luck and me being tired and a little sick. Other possible explanations wouldn’t be so nice, so we’re working on that one while staying watchful. It is true that, both days, the out-and-about portions of my day slightly exceeded available energy, so renewing the focus on the slow hare model seems sensible. And I’m still way behind on answering my email, including a really thoughtful response to the recommendation of Mistakes Were Made (but not by me) from the left coast. My adventures have left me with one badly bruised knee, sore joints, a pulled muscle in my chest and a very sore right shoulder. Happily, we have newly gained knowledge of a whole series of exercises for the shoulder, so they are keeping it exercised and loose.

Something about doing the shoulder exercises stimulated a lost memory of a trip to the emergency room, probably five years ago, when a sharp pain in my shoulder during the day caused the dial-a-nurse line to worry about a heart attack. It wasn't, and the pain eventually went away on its own, but in retrospect, we got to wondering if this might have been tumor-related? The surgeon told us in an early visit that the part of my brain being most pressured by the tumor was that which controls the right shoulder and arm. Could that have been another early symptom that we explained away, lacking any linking evidence?

Thanks for the movie recommendations! We went with the John Adams mini-series, which we’re enjoying, though the greater context provided by my recent reading of the book has also helped us a lot. Seeing the dramatization of the live smallpox inoculation was stunning and sent us running to the book, for its longer explanation of the process, as well as to Dr. Google. We also visit Dr. Google to find out about the historical accuracy of pierced earrings in the revolutionary period, as it looked so modern to us. Live and learn: Shea says that piercing was common for hundreds of years, giving sway to screw-back earrings only in the 1920s. Curious how these things go: it required months of lobbying to get my mother to permit me to get pierced ears, because in her day, nice girls didn’t have either pierced ears or wear ankle bracelets. Ankle bracelets never appealed, but pierced earrings were the hallmark of fashion when I was in seventh grade.

In the interests of balancing energy, activities this week are being rationed and regrets sent to several that would otherwise have been nice to be able to do. Friday brings a half-day-plus of ethics presentations at the VA in Danville, so the beginning of the week needs to be lower-key, ruling out a meeting in Chicago the day before that I’d hoped to be able to attend. Next time, it will take priority over something else in its week. If practice makes perfect, this balance thing will be a wonder to behold by the time I’m fully recovered. That will be interesting to see.

Our good wishes to all for a peaceful and restorative Sunday and a great week to come.

Friday, December 5, 2008

Good News and Some Other Stuff

We saw the surgeon for a follow-up appointment yesterday, and he was very pleased with how the incision looks and with my progress generally. What was a little less wonderful was the news that I’m likely to keep having headaches for up to a year or more. Putting this in the best possible light, at least it means that I’m not being a total hypochondriac about recent headaches, which seemed to the “drug free” (see last post) me to be excessive this far out from surgery. It turns out, they’re to be expected. Oh well. The next check-up isn’t for another three months, and that one will probably involve another MRI. That will be about six months after surgery, which is when we’ll find out how much the brain tissue has refilled the tumor void, because by that point, that’s as refilled as it’s ever going to get. After that, I think we switch to once-a-year scans, to watch for recurrence of the tumor, as it is not uncommon for mengiomas to recur. Since mine was benign and was totally removed, that puts me in the very lowest risk category, however. At the same time, women who have menigiomas after 40 (me) have a higher incidence of breast cancer. I guess I’ll pull that reminder to get my mammogram out of the pile and get to it. When it arrived, it felt like too much medical stuff on top what was already going on, but this frames the choice a little differently.

For no particular reason that is apparent, I was awake in the night, so finally figured I might as well get up and work. The good news is, it was really productive time, all except for not being able to find a folder in which I’m keeping the successive drafts of one of my current writing projects. Without question, the folder must have gotten moved in the general cleanup that always precedes end-of-the-semester grading. (One class down, one to go!) I surely put it someplace on purpose. Despite extensive searching, though, it hasn’t resurfaced and I am mightily puzzled. Also, vexed. This is the kind of thing that happens these days that just drives me crazy, although the answer for what I did (and why) is likely to float back, just not soon enough. Soon enough in this respect would have been three hours ago.

After mentioning that I was reading John Adams, E suggested Trollope’s Pallister novels, so I’m now onto Phineas Finn. I don’t know how I missed these before and I’m enchanted.

Today brings seeing my 6th grade pal for lunch. J uses the term “protégé,” liking that better than the official term “mentee,” but I haven’t ever really warmed up to either term. I do like her, though, whatever word defines our relationship. More PT, more strength training, and a meeting or two. For me, that’s a full day of out in the world, to be balanced with working at home on the grading and the writing. Yesterday was much the same (OT instead of PT, though) except that the out-in-the-world part used a little more energy than I had—by the end, I was dragging. The surgeon pointed out that the best way to look at these things is on a week-to-week basis, not daily, as he reminded us that there are going to be good days and bad days. Yesterday wasn’t a bad day, it just wasn’t stellar. That’s still pretty good!

Have a great Friday. Does anyone have any movie recommendations to share for a good weekend watch with Shea?

Wednesday, December 3, 2008

Shifting Balance

Better is a great place to be, but it’s not the same—or as good as—all better. Phase Five of this adventure means that every single symptom/side-effect is better than it was, and most dramatically so. Most of the time, that’s enough. The rest of the time, this netherworld of “better, but not all the way” is awkward, particularly given how unpredictable it can be. One day, there will be energy and the next, not so much. Or, I’ll feel fine while starting off and wilt midway through an event. While all along, people warned that it would be a long recovery process, the every-dayness of it—and just how long this slog really is—are more challenging. It wasn’t nearly so apparent, somehow, when most of my time was spent at home. The task at hand is to achieve some balance and grace: not being too hard on myself when the energy isn’t there or when it feels like I’m wallowing. For some reason, the scar on my head feels like more of a disfigurement now than it did when it had staples in it. This is odd and puzzling, but it’s real enough. Regular old congestion headaches always trigger a question about whether it’s congestion or my brain shifting back into the tumor void, which seems borderline neurotic. Balance then reasserts itself, along with appreciation for how good things are now. There are just adjustments for how tiring the stimulation of being out and about can be—and how great it is that it is possible to be out and about.

There was a very funny moment last week when at lunch with a colleague, when we were discussing my tremendous progress, including getting off all the medications. In the conversation, at one point, he said “one week drug-free, that’s great!” just as our food was arriving. You should have seen the look I got from the waitress.

I’ve been reading David McCullough’s John Adams. In one of her letters, Abigail Adams refers to the difficulties the revolution was bringing to daily life, and she wonders if their descendants would ever fully be able to appreciate the sacrifices made to permit them (that would be us) to live in liberty. There’s a sense of perspective to stop you short, as nothing of what we experience is anywhere near the difficulties of their lives in ways large (the individual consequences of committing treason by signing the Declaration of Independence, for example) and daily (what the everydayness of life meant in a time when travel was by horseback in this country and by ship across the Atlantic and participating in national events meant being away from home for months if not years). With all our creature comforts—not to mention the ability to have brain surgery and get back to life within weeks and months—we are spoiled. It doesn’t take much looking back to highlight the full extent of how spoiled we are: our family letters include one from our civil-war-veteran homesteading ancestor, who used to write to his wife (“Dear Wife,” all the letters begin) and mail them on his periodic trips to town on his horse, a journey requiring most of a day each way. There’s one letter in particular that describes keeping an iron anvil at hand to kill the rats going after his grain. This would be through the winter on the South Dakota prairie, where he was living in a sod hut.

Looking for the precise words of the Abigail Adams letter, which I never did find, highlights another shortcoming of the Kindle: it’s very hard to locate a remembered passage, as you have to search for it (laboriously, given its dumb keyboard) by keywords, and if you don’t recall them precisely, the only choice is a hugely time-consuming process of stepping through, page by page. Finding things in a real book is ever so much faster, when you can page through and have visual cues on the page, or at least can skim to find the context and place. On the other hand, I truly love being able to alter the size of the font depending on how tired I am, and the portability of it all. An unexpected side effect, though, of reading on the Kindle, is that people in my house never know what I’m reading now. It used to be that they’d see the books lying around and ask about them, or just track progress and topics. It has only slowly emerged how much conversation used to be catalyzed that way and the necessity of saying now “I’m reading xyz and….” It’s interesting how small changes have larger ripple effects sometime.

Writing here regularly is one of the casualties of being out and about more; there’s only so much energy to go around, especially now as the end of the semester is upon us—and not one single second too soon. Here’s to ends of segments—the semester, the year, this adventure. Cheers to all.

Sunday, November 30, 2008

Checking In

We have a beautiful, wet snowfall decorating the outdoors. It’s our first real snow of the season and it’s perfect, story-book snow. There’s no wind so every tree limb is outlined, and the streets cleared themselves almost instantly because it’s above freezing. It’s a perfect Sunday at home.

Michael and Shea both came down with something that, in due course, got passed along to me. Except while it was mild for both of them, I seem to have a stronger, more lingering version. Or at least to be reacting to it more strongly. This is the perfect opportunity to put into practice all those lessons I claim to be learning/have learned about trusting myself, taking it slowly when the energy isn’t there, etc. The theory is easier to grasp than the practice, as my first instinct was to plow on through it and only belatedly to realize that rest is indicated. More slowly than I like to admit, I did grasp the lesson eventually and have consequently been sleeping more of the time than warrants tallying up. Something about this bug has brought back headaches, which is vexing, but my balance continues to improve, as does my shoulder, so there is much more forward progress than anything else. However, since I’ve been working on two or three writing projects, checking in here wasn’t in the cards with reduced energy available. I miss the contact!

Michael and Shea are working on finishing the drawers for the linen cupboard that we moved when we re-routed the upstairs hallway when we did all our remodeling some years ago. Hooray! I'm being quietly supportive as I'm totally thrilled to have this project well underway. It will be great to have the drawers back in use and also to have the linen cupboard, one of the pieces of original, beautiful woodwork in the house, complete again. Plus, it is always fun to watch and listen to the two of them working together.

Back to the writing projects. Our Sunday Illinois greetings to all.

Thursday, November 27, 2008

Thankful for You

We have much to be thankful for today. The support and caring that have come from all of you is right at the top of our list. Thank you for your friendship, comments, help in oh-so-many forms, suggestions, advice and, most of all, being out there caring. Have a great Thanksgiving.

Tina, Michael, Kearney, Anna Shea

Wednesday, November 26, 2008

(Morning) Twilight Stage

We had a robust family discussion one night on a walk about the correct definitions of twilight, dusk and sundown. There might have been a few other terms in there, I forget. (I’m adapting to the forgetting more gracefully and can even make jokes about it—most of the time.) In any event, we tried to differentiate each term, not very successfully, as we were watching a gorgeous sunset and trying to find the right term for each chunk where we could detect changes in the light. My favorite part was what I believed to be twilight, though Shea in her true-to-form self vociferously contested my application of that term. I like what I think of as twilight, with its mix of light and dusk and pretty colors. At least that’s my definition and why I chose that name for where things stand, though as Michael points out, my twilight is probably the one before dawn, not going into nightfall. I would have posted this sooner except I wrote this on my way out the door this morning and he was concerned that I was sending a gloomier message than intended by using “twilight” without explaining….

The cumulative effects of tortoise-dom, or slow hare-dom, whichever, are in full swing in this stage of my adventure. I am fully myself, just less often. While the summer was a twilight of its own, where nothing ever felt quite right and nothing got done (for which I beat myself up mercilessly), now I feel like my old self, just in short spurts and not as consistently as my old life. The epiphany of coming out of anesthesia and really feeling like “me” contrasted with the summer and early fall is not something I’ll ever forget. However, that I’m not my old self reliably or as often requires an adaptation that I’m still striving to master.

In some respects, it is freeing to say “no” more often. That’s something I’ve never really given myself permission to do, so exploring that realm has almost as many positives as negatives. The process of assessing my priorities to assign available energy is a good one I only wish I’d done while I was at full strength. It is dumb that it takes a full-scale intervention and “stop action” event to make that happen. We’re all usually so busy that we hear all the advice about prioritizing, and we nod our heads and say “Oh, yes, and I’ll do that another later.” I don’t have any real words of wisdom here, other than to pass along that I wish I had done it sooner.

On the other hand, it can be frustrating that being out in the world costs energy in ways that are hard to measure. It’s not possible to schedule a whole slew of back-to-back meetings, for example, which was a staple of my life for decades. That’s hard to get used to, the more so because of how unpredictable the energy levels can be. While it’s no longer mandatory to block regular times for full-scale naps because on many days quiet periods of rest at home can work to recharge, I just don’t know what to expect on any given day.

“Everybody” says that it can take one to two years to be fully back to normal and I’m prepared to take this at face value. My progress from even a few weeks ago is tangible, so I’m not discouraged, just trying to figure it out and get the balance right more often than not. Living through it, though, has its grey moments, even as it has so many moments to savor, celebrate and for which to give thanks. I’m calling Part Five the Twilight Stage.

Tuesday, November 25, 2008

The Product and a Person

After my recent post about time spent at home for this medical adventure compared to the longest periods I’d ever spent off work before—having babies—Kearney pointed out that this time, I’m more like the baby than the mother. In a lot of ways, this is true, as it’s my brain this time that is adapting to new circumstances. Kearney pointed out: “You underwent some pretty shocking physical trauma, during which your brain got all mushed about, and then in some respects it had to re-learn how to control your body (especially the right arm/shoulder, balance), process language, etc. Think about how much time new babies spend sleeping while their brains do all that new stuff, especially given that new brains are designed to be extremely plastic. Yours isn't really designed for that per se, but it's doing a darn good job anyway.” This perspective, which makes a lot of sense, would then make the “new me” the product of this adventure, as well as still a person who liked to be greeted, acknowledged, respected, etc.

Meanwhile, a physician of our acquaintance told us, in the nicest possible terms, that it is “ignorant and unfair” to suggest that physicians pursuing evidence-based medicine (EBM) aren’t caring. That seems right: the more I’ve thought about this, the more it seems that many of the unintended consequences we’ve experienced from, say the quest for identity above all else in medical interactions, stem from the systemic implementation of the EBM findings, not necessarily the caring (or not) of individual participants in the system. So maybe the evidence-based management findings are even more relevant than on first thought. That’s because the implementations of EB medicine that reduce humanity and strive for consistency would then be the artifact of management decisions, not necessarily individual care providers. There’s some evidence to support the view, then, that the evidence-based management literature might be recommended to the health-care leaders implementing findings from evidence-based medicine. I talked yesterday with some folks in a large medical system and one of the topics we visited were the problems that have resulted from the system’s implementation of pay-for-performance incentives in a number of layers. The evidence-based management literature is very clear that individual financial incentives are not a great way to get better performance—they’re just easier to implement than coherent, meaningful systemic change.

This week has brought more advances in the healing of the incision, such that there’s now really only one remaining small (1-2 inches) sore section; some of this improvement was brought by Michael pulling what seemed to be some ingrown hairs elsewhere. Within hours after his work, the swelling subsided, and that section is hard to find any more after it had been troublesome since the beginning. The scalp is still sensitive/numb, but the progress is so great on the incision that we’re feeling optimistic indeed about the prognosis for the rest of it.

I’m still learning to balance my energy with tasks to be accomplished, so that’s it for today. More soon.

Sunday, November 23, 2008

Giving Thanks for Hair

People who haven’t seen me since surgery usually comment on how great I’m looking. The usually unspoken subtext here seems to be “compared to what I expected (or feared).” Sometimes, if spoken, the next remark is “you still have hair!” Those comments especially come from those familiar with brain surgery, who have had some form themselves, usually, or know someone who has. The fact that the neurosurgeon only shaved the incision and not my whole head has been an enormous positive throughout this experience, though it may be that I’m only just now truly appreciating the full extent of his gift.

Among other things, it lets me go out in the world without having to be a “brain surgery survivor” at every turn with a headful of stubble or very short hair. Pretty much, I look like I have always looked. Although there are still frustrations with not being able to do as much as I’d like, or as fast, the tumor and surgery are not central facts of my existence or identity. It’s great to be able to talk about this experience when it’s appropriate and otherwise just let it be. A local brain tumor survivor organization has generously reached out to me, with resources and offers of support. As I thought about it, I realized that having had a brain tumor removed is for me simply a medical adventure I had—and am still having—but, for now at least, that’s it.

Counting my many blessings is important to me, and today, I’m thinking anew about giving thanks for having hair. The glorious feeling when I was first able to wash my hair again myself is still real to me, and I hope not to forget it anytime soon. Having a full head of hair, ditto.

Saturday, November 22, 2008

The Power of Ideas

Our day-to-day lives are very little different before and after my father’s death. Because his hearing was poor enough that it wasn’t any longer possible to talk on the telephone, we never talked. He had stopped sending even his intermittent email communications a while back, so most of our communication was one-way: we sent him books or notes or email now and then. Looking back, we see that we’d tapered down in that area, too, probably because it yielded little response over so much time. We even had the feeling, leaving the last time that we visited him in early summer, that we might not ever see him again. All the same, the world feels different now than it did before we learned of his death.

Shea and I are watching all the seasons of House on DVDs. (My policy is that pretty much anything your 17-year old daughter will do with you, you should do.) Last night, one of the episodes showed House doing the childhood game of “I’ve got your nose” on a patient. My immediate reaction was “my father used to do that with me!” I hadn’t thought about that in years. Even a memory of that sort has a different texture after his death. I’m still trying to sort out the power of the idea that he was alive, just not in contact, compared to the reality of his death. They feel quite different, though I don't really have a handle on how or why.

Recent discussions about evidence-based medicine and error-reduction in health care have me thinking about the other error-reduction and evidence-based literatures. David and I had an interesting discussion about error reduction in aviation (hugely successful, with some elements, like checklists, slowly being adopted in healthcare) stemming from an idle musing on my part about why airlines don’t seem to value teams of people experienced with working together. All airline employees bid individually on schedules and routes, so most (I think) rarely work with the same people. David pointed out that the premise behind airline training, at least for pilots, is that it has to be error-free, no matter who is in the cockpit. That makes sense, I guess. On the other hand, there is still something about working with people you know and trust and have gone through experiences together that seems valuable to me.

The evidence-based management literature focuses on the critical need to get and base decisions on real facts, not beliefs or what-we’ve-always-done practices. Reading that literature, one of the main lessons I draw from it is the importance of people to organizations. Here’s a quote from Jeffrey Pfeffer’s congressional testimony on this topic—an easy read and worth the time:

Although the list of high commitment or high performance work practices differs slightly among authors and studies, most such lists include: a) sustained investment in training and development, including job rotation, both formal and on-the-job training, and a tendency to promote from within as a consequence of the successful internal development of skill and people; b) an egalitarian culture in which formal status distinctions are downplayed, salary differences across levels are less than in the general economy, and in which people feel as if their contributions are important and valued; c) delegation of decision making responsibility so that skilled and developed people can actually use their gifts and skills to make real decisions; d) high pay to reduce turnover and attract the best people, coupled with rewards that share organizational success with its members; and e) employment security and a policy of mutual commitment, so that the workforce does not fear for the outcomes of events over which it has no control and instead, feels reciprocally committed to the employer.

It is important to note, however, that these management practices are not "techniques" to be imported. As David Russo, the former head of human resources at SAS Institute once commented, what matters is not what the company does -- its various programs and policies -- but the philosophy that provides foundation for all of its choices. That philosophy is one of valuing the workforce, treating it with respect and dignity, and making people as if their jobs are meaningful and their contributions important. [emphasis added]

As Kearney commented about the emphasis on training all health care staff always to deal with identity first, how sad that current concepts of quality health care seem mutually exclusive with common courtesy and humanity. Why is it so hard to find a sensible middle ground?

Bob Sutton has some fascinating comments today on a bailout for the automakers, including his experiences with the management culture at GM:

What ideas occupy your thoughts?

Friday, November 21, 2008

Looking Back, Turning Forward

This week marks nine weeks since surgery, ten weeks since diagnosis. Over that span, I’ve spent more time at home than ever since I started living independently at 17. I’m still processing what that means and how I feel about it. Even maternity leave with new babies was “only” six weeks each time, so this has been a novel experience. Of course, it’s hard to say what being at home for nine weeks would be like when I could actually experience the whole house, with a real life—much of the time, especially early, I was in bed. Since I’ve been emerging from the sickness cocoon, one side-effect of the surgery and its accompanying fatigue has meant that I get more done if I stay home. I think that must be related to the cost in energy from the stimulation of being out and about among people and in different places, versus the lower levels at home.

Looking back, this is the culmination of a trend that started some years ago. Before then, regardless of the efficiencies of at-home versus in-office, I would have tackled most tasks at my office. Over time, though, I’ve moved to doing more and more work at home. Grading, for example, goes much faster without the draw of other options and people to interact with, so I have been doing that almost exclusively at home for some time. Now, the thought presents itself that perhaps moving to doing that work at home was another, unnoticed, coping strategy as the tumor grew?

We are still visited every now and then with moments of insight about certain events or changes in recent years that were likely related to the tumor. Working more at home is one; another is that I stopped being able to sleep on my right side some years ago because it hurt my shoulder. The exercises to strengthen my shoulder never helped much at all. When the right arm problems started after surgery, the surgeon showed us a scan of the tumor and pointed at a spot directly above it, noting that portion of the brain controls the right arm and shoulder. He speculated that the problems were from the pressure that part of my brain had been under and the movement of my brain back into that space. It’s plausible that the shoulder sleeping challenge was an early side-effect of the tumor, as well. That’s along with the balance problems that led us to begin strength training two years ago, the ever-more extensive notes I made for my classes and presentations, and all the other things I've written about.

My email has been full of comments about the effects of evidence-based medicine on empathetic care stemming from Kearney’s post. Another aspect of the changing medical culture that has been pointed out is how shift time-limits (especially for junior doctors) affects the continuity of care and thus personal relationships in health care. We were lucky in this medical adventure that we had a very consistent physician team: the surgeon. In a more “normal” hospitalization, there’d be residents, interns, and platoons of specialists. In Michael’s dad’s hospital stay, there were intensivists and hospitalists as well as your more garden-variety nephrologists, oncologists, etc. In my case, there simply weren’t other physicians or hospitalists involved in my care, at least that we personally interacted with after the surgery. We saw a slew (24, by our count) of nurses from Wednesday to Saturday, but only one doctor. We never did see my primary care physician, who in past experiences always stopped by when he was doing rounds of his patients. He was around both times babies were born, and involved in their assessments and early care, for example. (Then, his office was in the clinic connected to the hospital and now he’s on the other side of town, but we’ve not had any contact at all from him, which strikes us as unusual, given our decades-long experience with him: the changes in medical systems are even affecting people’s personalities, is our conclusion.)

Finally, C pointed out that the anti-seizure meds could well be a factor in my short-term memory losses, as it’s one of the standard side effects of them. I’m feeling a little foolish that I never even thought to look up their side-effects, particularly since I’ve had unusual reactions to so many of the meds throughout this experience. Duh.

Now that my energy is returning, I’ve excavated my desk and scanned the horizon for work, trying to plot a sensible course that fits available energies and priorities. Wish me luck. Happy Friday to all.

Thursday, November 20, 2008

Part Five Officially Underway

With 48 hours of no drugs and a renewed interest in getting back to my to-do lists (not to mention my ramping-up de-cluttering drive), we have declared Part Five officially under way. To be pain-free, or nearly pain free—certainly nothing requiring constant analgesics or narcotics—and having completed the seizure-preventing course of meds, this feels like a big step. Slow Hare speed monitoring is on high alert.

Recent mention of customer service experiences pushed a lot of buttons. In addition to David’s story about his service ticket being closed because he wasn’t home when the appropriate technician called two days after his extensive span on the phone with the first-level call center, other stories poured in. The technique of “closing your ticket because you weren’t there,” not because the problem was solved, seems be a particular company favorite. The most frequently mentioned variation was “you didn’t respond” within an arbitrary (and undisclosed) time window. What on earth gives these folks the idea that this is a sensible way to conduct a business? Do parents not teach about penny-wise and pound-foolish any more? Or have we jettisoned that bit of wisdom along the way in our drive to be modern and trendy?

Kearney’s post about “person or product?” also stimulated a lot of comment. In a conversation with a physician, the take was very different: it’s critical, in that view, for verification of identity to occur before even a greeting, so it is never, never overlooked. On the other hand, J, a social worker, made observations about the (unintended) effects of evidence-based medicine over time in recruiting social workers and nurses. I might not be summarizing well, but the gist is how, at the beginning of her career, the ability to connect was paramount in assessing applicants, as opposed to now when those attributes are disregarded, or at least dramatically reduced in importance, in favor of the ability to implement assessment procedures, etc. As is so often the case, it seems to me that a sensible balance is required. It’s hard to achieve the balance with human beings infesting our system, and nonetheless should always be our goal.

My view is heavily influenced by my work teaching “soft” skills, like communication, professionalism, conflict resolution, management/leadership, ethics, etc. There’s nothing that gets attention when addressing a medical audience like empirical evidence revealing that the physicians who get sued for malpractice are not those with poor technical skills, but those with poor communication and connection skills. That stimulates unbelievable, immediate changes in body language, focus and respect. Anecdotally, med mal lawyers I know talk about the people in their offices saying “I know it was Dr. Smith who cut off the wrong leg, but don’t sue him because he was so nice to my mother and wife. Sue all those other jerks who were involved, but don’t include him.” While we can be pushed by events into suing people we like, the threshold for what it takes is very high. One interesting study in the medical field shows that many families never even considered suing until sky-high bills they couldn’t pay started arriving for their dead or birth-damaged babies. Some medical centers have modified their procedures in cases with “adverse outcomes” (the label of choice) to stop all billing procedures until the facts and responsibility have been sorted out.

At the other extreme, Bob Sutton has introduced a lovely concept called TCA (“total cost of assholes”) in the workplace, and generated an incomplete list of costs that can arise from tolerating truly disruptive personalities in the workplace: distraction from tasks; climate costs (fear of making suggestions, reluctance to take risks, inability to learn from failures, damage to forthright discussion), loss of motivation and energy; stress-induced effects and costs (absences illness, etc); turnover, lost clients, etc.

We’re not suggesting that not greeting patients moves medical staff into the "costly" category, though we are asking whether the cumulative toll on relationships has been considered. Surely there must be another way to maintain rigor in patient identification without sacrificing common courtesies in greeting and relationships?

The to-do list beckons, including occupational therapy and my new mentee at the middle school. Not to mention the piles of grading and other work—and the speed traps of my own devising and those in my environment that are monitoring the pace. See? Back to the need for a healthy balance in all things. Happy Thursday to all. Keep those notes coming. Your ideas and questions are a wonderful tonic in this medical adventure of ours.

Wednesday, November 19, 2008

Habits Old and New

Old dogs can learn new tricks. My new resting habits are Exhibit A, and there are others as well. Thankfully, they’re not all tumor-related, and thinking about my new ways for maintaining energy levels has increased my awareness of other positive changes in daily habits. Please note that we’re conspicuously not thinking about how life will change next year when Shea starts college, though we’ve been laying foundations for an empty nest quite consciously for a few years. We’re enjoying life too much as it is to contemplate that upheaval just yet.

Here’s an example of the kind of change I am willing to think about now: for many years, I’ve read three newspapers every day. Like so many pieces of my life, it had a routine to it: headlines on all papers first, then a front-to-back reading. In the summer, when US papers aren’t available, we tried the International Herald Tribune and buying (once it started and was widely enough distributed that we found it around us) the European Wall Street Journal. Neither was very satisfactory, compared to the domestic editions. As on-line versions came into being, I switched some years ago to reading the New York Times exclusively on-line while we were away.

While there were oddities, it’s still possible to read the entire NYT, with some limitations imposed by their implementation. I submitted a range of suggestions to their customer service site, summer after summer, to a selection of which responses came back saying that my experiences were wrong and their way was right. This was emblematic of the lousy customer service attitude of so many large organizations that David and I were talking about the other day. While my suggestions might not be worth implementing, it’s brainless to write back and tell me my experience is “wrong.” It might not be useful to them, or worth a change, but that kind of response is beyond tone-deaf, especially when writing to a loyal, decades-long customer. That’s my assessment from my new mellow perspective. (It boggles the mind to think about likely reactions to such notes by New York City customers who are live with big-city stimuli and pacing and general Type A-ness.)

Anyway, leaving that rant alone, I still read the paper version at home—and sometimes the on-line edition, too. I frequently read the on-line version exclusively while traveling. (If you open and download all the stories you’re interested in while you have a connection, you can then read each story in succession on an airplane or in another location with no network access. The trick is to notice whether the story has a second page, and make sure you get the “single page” option selected so you have the whole story when you want it, not just the first chunk. It would be great to have the option to open stories only in the single page format so this last step wouldn’t be necessary. After my other experiences making suggestions to the on-line NYT, it seems impossible to imagine that anyone at the paper will listen, so I haven’t even tried to suggest it.)

What’s interesting to me, and what catalyzed this whole essay here, is that the unwritten “rules” in my head seem to be completely different for the paper version and the on-line version. In turn, over time, this has changed for the better the way I approach the paper version.

On-line, I usually read the NYT’s commentaries first; on paper, their placement on the op-ed page means they come after all they international and national news. Somehow, having read the on-line version in the way it arrives has given me permission now to read the physical paper out of order. Of course, Michael always reads the paper out of order according to my set of rules. Under his less rigid life view, which leaves him generally more relaxed, just about any approach works. (He also doesn’t have any rules about folding the sections back to what he’s reading and leaving them lying around that way, but the less said about that, the better.)

Another digression: the paper price of the WSJ in Europe is too high (2 euro a day) for regular consumption, especially when the dollar is in the toilet as it was last summer. The regular on-line subscription price is ridiculous, so we tried it on the Kindle this summer under a free offer choice. Take my word for it that it is completely maddening to read the Wall Street Journal on a Kindle. Together, these two organizations have made a combination of dumb-headed choices that leave even reasonable users (Michael is the metric for this) dumbfounded. “They did this on purpose?” is a common refrain. And the price after the free offers expire is disproportionate to the value. The upshot is that we’d rather go without the WSJ than read it electronically. This cannot augur well for the business model news organizations are going to have to find to survive in our changing world. (Unless, of course, we are so far out of the mainstream that their approach not working for us practically guarantees them success with the rest of the populace.)

Trying to come back to the topic, the short version of all of this is that a changed medium has changed my rules and habits. I still find the paper and electronic versions to be different experiences, differently satisfying. When home, I still read the paper version, though it’s much more frequently in what would have previously been a non-compliant, out-of-order, fashion. My inner rules czar has come to accept this gracefully. That seems like a harbinger of generally relaxed rules, especially the arbitrary ones, thoughtlessly adhered to at some cost even when not useful and constraining. That’s a positive change.

I've come to see the difference between a routine that simplifies life, reducing the need to expend thought on repetitive tasks (how to load and unload the dishwasher, for example) and one that is constraining. My new-found habits catalyzed by the change in the newspaper-content delivery mechanism have been freeing, and are leading to a re-examination of other routines. Some survive the examination, like having a set path to frequent destinations. I hate to have to think about navigation, and knowing in advance a way that works is, for me, value-added. Michael, on the other hand, loves variety and drives a different way as often as possible, even to places he goes all the time. When riding with him to a place for which I have a set route, it takes a real act of will not to tell him that his way is “wrong.” (Sadly, this effort is not always successful, as even riding, it’s less wearing for me if the familiar route is followed. I’m working on this.) Differences are illuminating and world-expanding.

So is letting loose of rules and routines that do not make life better.

That’s a lot of writing on a little topic. Or, maybe a big one, if all the implications are examined. Whatever. I hope the sun is shining wherever you are, at least inside, if the outdoor sun isn’t cooperating or didn't get the memo today.

Tuesday, November 18, 2008

Is the Shoulder Bone Connected to the Foot Bone?

Doug got to wondering about what the mechanism is that causes my shoulder/arm to work less well when I’m tired than the rest of the time. That got us to wondering about it and we don’t have any good answers. I do know that, during my occupational therapy yesterday, Sheila (OT) was working the shoulder blade and associated muscles, which at various times caused the tingle in my fingers, especially my little finger, to reappear. Other manipulations brought sharp head pain. And, the portion of my upper arm that aches when my arm is tired is connected somehow directly to the muscles around the shoulder blade on my back. Those seem to be the main culprits in not doing their job, and somehow everything else radiates from that. My shoulder is now taped again, by the way. Kearney consulted Dr. Google to learn that fatigue is a major symptom after just about any kind of brain trauma (this category includes brain surgery), which means that the brain has to work harder to process life going by as well as to heal itself. She points out how long it can take for even a badly scraped knee to heal—and that’s only skin.

Doug’s original question was why fatigue in the CPU--he’s a computer guy--would lead to soreness in muscles/limbs, and wondered if maybe there’s a connection to nerve signals in both directions between the CPU and the limbs being affected by hormones and if exhaustion affects hormones. (He was concerned about turning me into a computer after Kearney had just objected to me being turned into an object, but she didn’t object, so I’ve stayed with his metaphor.) Doug’s question was about the difference between the limb getting tired after doing a lot and it getting tired just because the brain gets tired. All good questions. Does anyone know the actual mechanisms?

On a related point, David visited this weekend on his way to taking his mother on an 80th birthday journey to her land of origin, and we got to talking about customer service. That reminded me to write a follow-up on the response (sort of) we got to our report about our medical adventure, including our counting exercise. We got a two-sentence letter thanking us and saying it had been passed along to relevant others in the organization. As David pointed out, it would have been nice for such a letter to include even the most passing reference suggesting that its content had been read and considered. This applies especially to the simplest suggestions, like double-sided name tags. Why is stuff like this so hard to perceive from the inside and so clear from the outside?

Today brings PT and strength training. Then, rest, as today is another teaching day (3-hour class, prep and aftermath) and that’s about all the energy there is for exertion these days. More later.

Monday, November 17, 2008

Belated Two Month Status Report

Yesterday, we summarized some of the lessons we have extracted from our family’s medical adventure. It’s important to see this as a group experience, because while there was only one surgery, its effects on the rest of the family were significant in worry, time, exertion and in how it completely superseded other important matters in everyone’s lives. One of the blessings I count every day is how well we got through it together.

For me, I woke up this morning feeling unambitious. That’s an effect of my physical state, I’ve (very, very slowly) learned. For most of my life, waking up has meant reviewing my to-do list and getting to work. On good days, now, the same thing happens. If it doesn’t, one of the attributes of a tortoise or slow hare is to heed the signal and take things slowly. Originally, my first approach when that happened was to ignore it and push on, figuring it was an effect of shirking, or maybe depression. Since observation has shown that neither of those is really a reasonable assessment, and experimentation has shown that resting on those days actually leads to better results, that’s what I’m now (belatedly) learning to do. The good news, for me at least, is that yesterday, I woke up thinking about the book I have under contract and actually wrote a few pages. Teaching today and tomorrow will be my priority and take all available energy, and I’m hoping that the back of the week might be devoted to reviving the book project, getting reoriented with that and getting back to work on it. That prospect is a happy one to contemplate.

Kearney’s most recent post stimulated fascinating conversations about some of the perhaps unintended and unconsidered consequences of the evidence-based movement upon healing professions. That conversation needs to be continued, as I think it has implications worth examining. More on that later, I hope.

On the symptoms/after-effects front, here’s a top down assessment of where things stand two months after surgery (plus an extra week for being at capacity on the exact two-month anniversary).

Two months after surgery, my scalp still has an area the size of my hand that is numb and hyper-sensitive (yes, at the same time, and yes, I know that sounds contradictory). The incision is nearly impossible to find in some places (the majority of its length) and still pink and raised in four or five short segments of about an inch each. The major ridge by the original drill hole has vanished. I have two small, dime-to-nickel-sized bald spots that look to be permanent.

Fewer and farther between than even two weeks ago. Headaches are still always a sign of over-exertion, and one reason they are lessening is because, finally, I’m getting better at reading the signals and slowing down when fatigue is rising. See? Even old dogs can learn new tricks.

Another month of twice-a-week occupational therapy is coming up. While, generally, I’m rebuilding strength and the range of motion is vast compared to where I started, there are still times when the shoulder is weak and has small ranges in which motion is not under my control. At the limits of my range of motion, it’s painful. As recently as Friday, after a full few days, I couldn’t sustain writing on a blackboard.

Also improving and also still not fully reliable. Fatigue always impairs my balance, but there are also just times and days when it seems to diminish for reasons I cannot find. Still, most of the time, it's better than it has been.

Tingling in extremities
The pins-and-needles in my hand and foot are completely gone.

The Brain Tumor Diet
This turned out to be yet another fad diet. I’m back to day-of-surgery weight.

Improving every day, and still not anywhere near full strength. 80 percent, maybe? This week was better than last week and that was better than the week before. Improvements are not perceptible from day to day, but remarkable if we do weekly comparisons. I still have down days that feel like reversions, but the overall trend is positive.

Cognitive functioning
Frustrating and unpredictable. The gaps are intermittent and usually small. It’s still maddening. Mostly, it’s short-term memory and an inability to summon specific words. Other times, it feels like my brain has just turned off, and I’m in dense-mode. This, too, is far less frequent than before. This is my major opportunity to learn grace and to laugh at myself. I’m making some progress on that front, as some of the lapses really are funny and rolling with it is easier when seen that way. Even if I never get better from here, I can function at this level.

Family Stress
My family is remarkable and wonderful. I’m trying to get them to assess how their level of stress is these days. Last night, my balance was a little off and Shea automatically moved into a position to help stabilize me while we were climbing the stairs. I’m not sure this is something I would have had on my wish-list of things for her to learn, but between her natural observation skills self and her innate kindness, she’s picked it up. As I’ve recovered, she’s no longer angry with me, as she was in the beginning of this scary adventure.

So: while we never contemplated a brain tumor education or our excursion on the brain surgery conveyor belt, we did make our place on it as comfortable as possible and we all did it together. “We” in this case means our immediate family and it means all of you who have provided caring throughout this journey. We couldn’t have done it without you.

Sunday, November 16, 2008

Intervening Post--Kearney (and her lab) on TV

Kearney's lab was featured on TV in Madison recently. It's cool, if you have time to watch it. In the current funding environment for science, they're also taking donations (via the university's proper research foundation) for Community Supported Research. She'd be glad to tell you all about it you're interested.

person or product?

Throughout this whole mum's-having-brain-surgery adventure, I think one of the hardest things for me has been dealing with the humanity/objectivity balancing act of modern medicine. It's something I'm still struggling with, both emotionally and intellectually.

When things got difficult, I coped by observing, analyzing and trying to understand, and for the most part, thinking about things in that way helped me feel better about the situation. But there was one thing that consistently elicited a visceral, almost overwhelmingly negative reaction: my mum's bar code bracelet.

Now, intellectually I understand that it is critical for hospital staff to correctly identify patients, especially when the patient will be, say, having brain surgery, and thus be unable to communicate. I understand that having a rapid and accurate way to do this (like a bar code) is important. Also, I think it's great that before administering any medication, they would enter the patient and drug information into the computer to verify that it was all correct. I'm sure this system has prevented many medical errors, and I'm all for that; I just hate how they do it.

It really bothered me that every time a nurse came in to do something to my mother (not interact with her, do something to her), the first step was to scan her bar code, which was on a bracelet on her right wrist. It made me feel like my mum was just a hunk of meat, some sort of product the medical system was processing.

And, in a way, she was: during that portion of the interaction, the nurse's attention was focused on the bar code, the scanner, and the computer receiving the data. Now, to me, one of the most important aspects of nursing is observing the patient to figure out how she is doing. For the less engaged, less wonderful nurses, this aspect was essentially absent; even for the completely over-the-top fantastic nurses, checking on the patient was an entirely separate process from scanning in the patient to administer drugs and check the chart. And the scanning business always came first.

During one particularly memorable incident, a nurse strode in and practically rolled her eyes with impatience as my mum struggled to get her bad right arm over to the left side of the bed to be scanned. I got the impression that she would have been happier with five pounds of saran-wrapped ground chuck on a styrofoam tray. You don't have to wait around for packaged meat to move itself.

It just seemed wrong to me that the emphasis is now on "the computer says that patient X needs Y," rather than observing that patient X exhibits symptom Z, suggesting that treatment Y would be a good idea, or even "after prescribed treatment Y, patient X exhibited response Z."

So, can anyone devise a system that combines the speed, accuracy and convenience of scanning a bar code with some level of human interaction?

The next time I see a nurse walk into a hospital room, I want her eyes to go first to the face of the patient, not the bar code bracelet.


Do I Have A Great Life, or What?

I’m feeling lucky. Lucky in my family, friends, support system and all the great people I know. Lucky that my constitution is as strong as it is. Lucky that science and medicine have advanced to the place that the surgery I had was even possible. Lucky that the tumor was benign, in an accessible place, and not entangled with my brain. Lucky that there is superb neurosurgeon in town these days. Lucky that I’ve been largely able to resume my regular life—so long as I get regular naps—without significant detectable differences from “before.” Lucky, most of all, that my life is populated by so many kind, smart, and interesting people.

Kearney and I have been struggling to synthesize and summarize what we’ve learned from this experience. We started this adventure on September 4, when the tumor was first diagnosed. As of mid-November, we haven’t been able to boil down or organize our thoughts very well, but here’s our starting list of lessons:

• Anytime any of “ours” are in the hospital, another of us should be there around the clock. No exceptions. (See post of September 25, at

• In any major adventure like this, information must be paced, due to overload; the magnitude of the situation means that information can only be absorbed in small bites.

We’re ruminating about what kind of overview would be useful explaining the stages of brain tumor surgery and its aftermath. It seems to us that both chronologically-based and topically-based information would be valuable. Right now, for example, I'd like to know what's normal/not re incision healing. Is it to be expected that some parts are almost totally healed and others are still pink and sensitive? Topically-directed information chunks, like one on how the surgery is actually done, one on seizure dangers and likelihood, one on what to expect in each stage, one on meds and resources, etc., would have been helpful.

• On that last point, SURELY there’s a computer program out there somewhere where you can input how often you need to take a whole set of medications, including what you can take with food and with each other or not, and that will spit out possible schedules that optimize the whole mess? If not, something like this needs to be developed.

• This may sound self-evident, except that it wasn’t to me: the importance of learning to read your own signals and factor that into timing, rest, etc. Maybe one can only learn this the hard way, for oneself, through trial and error, but more details about the kinds of signals to watch for might have helped me learn this earlier and better.

• That we're from pretty serious hardy pioneer stock and shouldn’t take it for granted.

• The importance of various kinds of support offered as well as, for us, how to offer things that people can choose among without feeling like defectoids because they're taking help. Learning to take help gracefully has been a huge lesson from all of this, especially for me, who would always much rather offer help than receive it.

• The importance of sharing information and the experience both to validate the experience and to avoid feelings of isolation. We can only write about our encounters, but we reckon that we represent a category of people to whom our experiences are generalizable

• In the health system, the importance of how staff interact with patients/families and actions that were especially useful for eliciting the kind of care that was best suited to us.

• Entering medical world with a serious matter is profoundly isolating and so much of it happens "to" you that having some method, any constructive method, for taking some control back is helpful. Ours happened to be our counting exercise. There wasn't anything magic about what we did, except that it let us feel that we were still ourselves, and still had some power/control in an otherwise completely overwhelming process.

We don’t have any global observations yet, as we surmise that we’re still close enough to it that seeing the big picture is beyond our current perceptive ability. Kearney will add some additional thoughts after she finishes lunch.

Tomorrow, a round-up of progress in the recovery so far.

Wednesday, November 12, 2008

If Thinking is so Tiring, Why Doesn’t It Burn Calories?

Like so many fad diets, the effects of the Brain Tumor Diet are fleeting. Although it produced an immediate weight loss in the range of 10 pounds, I now again weigh exactly what I did on the morning of surgery. On the other hand, my understanding is that some people are happy with an immediate, quick loss, so maybe the diet book author community still has an edge they can use to sell this diet?

In the PT assessment for continuation, I was able to do single leg balances (eyes open—closed eyes are much harder) for a minute each, without touching a foot down during that time. This gain is enormous for me. While it’s great, it doesn’t have much to do with stability while walking, which is the next goal.

Posts may be sparse for the next few days, given the obligations they include; in this new husbanding-my-energy phase, I may need to concentrate on those obligations alone and getting rest. I hope your week goes well.

Tuesday, November 11, 2008

Veteran’s Day

We couldn’t put our flag out this morning, because it was raining. I’m watching, in case it stops and we can change that. It’s the anniversary of Ernie’s death (Michael’s dad) as well, so there are many reasons to stop and think about others today. Right now, that seems better than the alternative, anyway.

Why are some lessons so hard to learn? Yesterday was a down day in energy/health, and didn’t go very well overall. By the time class began at 4:30, I felt iffy. When it was time for discussion, the students weren’t very engaged or responsive. My thinking on unengaged students, usually, is that what needs to change is what I’m doing. When not feeling well, though, it’s harder to act on that—which I also know. Rather than redirecting what was going on to get it back on track, I ended up thinking crabby thoughts about laptops in classrooms and unprepared students. The problem with that line of thought is that there are always laptops in classrooms and unprepared students, and there are lots of constructive ways to deal with that that still advance the cause. Feeling sorry for myself is never one of the top 500 answers. While it’s a lot harder to think creative thoughts when the words aren’t available and my brain is sluggish, the overall tone and trajectory are still always my job. I failed last night. That’s always a horrible feeling. L, bless her heart, was there with me, even though I’d said that things would be fine without her. She’s not been coming regularly, but something in our interaction yesterday brought her along, which made all the difference in the end, as when the energy just gave out—before class was complete—the luxury of just turning it over to her and going home was available. I have great friends. She managed to get things back on track and to get the students engaged and thinking about what they’d done, which was the goal. I’m really grateful, as well as chagrinned that something I know through and through—and teach—is something I once again failed at so badly. These are really hard lessons to learn and to learn. Why is that? It’s hard, but even so, it ought to be achievable.

Today should be better. Lots of sleep has helped a lot of the symptoms. One of the recurring lessons to be learned right now is about the number of events that are possible in any given day, and even more, balancing heavy days with lighter ones. It seems not to be a matter of time spent, so much as shifting gears, which is frustrating since multi-tasking has always been my thing. Yet one more thing to adapt to and try to be graceful about. The good news is that I’m not short on challenges.

While I manage to count my blessings (many) every day, I’m still cranky about the overall pace of recovery and how long this takes. More good news is that my actions are improving. One of my rules of the last decade is that I give myself permission to think anything I want to, and only judge myself on my actions. So long as my actions are honorable and appropriate, I let myself think any childish or retributive thoughts that arrive. I’m adapting this rule to the circumstances: so long as I pace myself (whether that be tortoise-paced or slow-hare-paced, the jury is still out on that one), I get to think the cranky thoughts about how this stinks. The trick, of course, is not to sabotage the good conduct, so as always, balance is essential. This is another part of reality, and of being a grown-up, that seems overrated to me.

The verdict is that more OT and PT would help, so we’re seeking insurance approval for another round of each. OT is still the shoulder and PT is working on balance and getting all the muscle groups working in concert again. The progress has been great, which might undermine re-approval; we’ll see what happens.

On other fronts, it looks like sufficient time has passed that the big outlets probably aren’t going to run the obituary for my father, which is disappointing to many in the family. I feel bad about this and wonder, if my energy had been better, if the outcome would have been different. There’s no way to know.

Trying to salvage some lemonade from yesterday’s load of lemons, at least I can work on making today’s class better and making sure that next week’s classes are great. The end of the semester is coming—and not a minute too soon. I think this approach, even with suboptimum teaching at times, was still better than it would have been to cancel the classes three weeks into the semester and in my calmer moments, I can find value across the semester. I’m working on holding those thoughts. If the sun were shining, this would be easier! Meanwhile, today I’m going to find the address and donate to the foodbank. Time to stop being so inward focused and do something for other people.