Thursday, April 30, 2009

More Growing Up To Do

Shea is a very healthy person who is almost never sick. Thus, when she not only caught the stomach crud from us, but also spiked a fever neither of us had, it was worrisome. After consultation, we concluded that it was likely the same virus we’d had, and not some other terrible currently circulating thing. While she’s more like me in personality in most ways, in being sick, she’s pure Michael: her idea is to go to sleep and stay that way, alone, until she’s better. I only discovered serendipitously that she was not keeping her food down, by running into her in the hallway on her way back to bed after she’d emptied and cleaned her wastebasket--which she’d fetched for herself when she felt ill. Are we terrible parents or what that our darling took care of this all by herself while we were not there to soothe her fevered brow?

The thing about all this that was next most troublesome to me, after recovery from the “terrible, bad mother” part, was how angry it made me with Michael. I know, I know, I know, it’s not rational. Or fair. However, it was real.

It took hours, and sleeping on it, to figure out what my warped psyche was doing: Shea is like Michael when she is sick (self-contained). It’s scary and pushes others out. (I know, I know, that’s not what’s going on; it just feels like it might turn into abandonment.) A completely irrational, retroactive, responsive fear about either Michael or the girls having a brain tumor sent me into outer space. The anger was triggered by the extrapolation that IF he had needed brain surgery, he likely would have excluded us, and how horrible that would have been--not to mention how helpless we would have felt in that situation. Are you cringing that you know me? Do I sound so whacked-out that you don’t want to acknowledge me in public any more? The good news is that even I could recognize how nutso this was, and managed to reel it in upon such recognition. Until then, it wasn’t so fun. Sunshine and reason now reign again in our house.

More good news is that while the recent blood tests demonstrated a cortisol deficiency that, even after stimulation, is still well below the “normal” threshold, my adrenals did respond to the stimulation. This is good news because it means there’s some hope of improving the array of odd symptoms that are detracting from full recovery. The first response is another course of very low-dose steroids--prednisone this time. We’ll watch for change in the troublesome symptoms and do another set of monitoring tests in four weeks. Evidently, people who take steroids for longer than three weeks (c’est moi) sometimes experience their adrenal systems choosing permanent vacation. You can almost hear the inner dialogue: “Shut down? Cool beans! Permanently sounds better than short-term only. Forget this vacation stuff. Let’s just retire.”

The responsiveness of the adrenal system to stimulation in the tests is even better news because it rules out a primary adrenal insufficiency and other icky stuff like Addison’s Disease (which JFK had) and their potentially horrible implications. Instead, what we’re seeing is hypothesized to be a secondary or even terstiary adrenal issue, and the prednisone is intended to replace the cortisol not being naturally produced. After sufficient time (at one point he said two years; surely not), you taper off and see if your own adrenal system has decided to come back to work. In this economy, the prospect of a steady job must hold some appeal even to an AWOL adrenal system, the more so since there seems to be plenty of work available for qualified ones in my habitat.

Stay tuned.

Tuesday, April 28, 2009

Theory One: Incarnation of Push-me-Pull-You

In Vancouver, Michael got some kind of stomach upset, which he managed to transfer to me by the time we got home. Our reactions to whatever it was (food poisoning? virus?) nicely illustrate the differences between us: Michael didn’t feel well and mostly slept during the day while I was off at UBC. In contrast, I had loud and messy symptoms, exhibiting the contents of my digestive tract in wastebaskets all over the house. So, he’s quiet and self-contained and I made a spectacle of myself. It has ever been thus.

The possible meanings of the yard-as-parable keep intruding into my thoughts. The first doesn’t fit all that well, but it’s plausible and with some brute force it can be made to work: the dramatic yet very slow changes in our front yard keep coming back as having some meaning because they represent a metaphor for my own transition during this medical adventure. My strong preference is to care for others, not to be cared for, as being cared for is a dangerous and vulnerable state for me, rooted in my mother’s death when I was twelve and the lack of parental care after that. There weren’t choices in the brain tumor adventure, so learning to be cared for was just part of the deal. The changes overall have been both gradual and large. We’re all in a better place than we were not too long ago: everyone in the family took part in my care and I was able to accept it (mostly) with reasonable grace. We’ve all grown and benefitted from the experience. It’s still hard at times for me and still triggers fear at times. On the other hand, in this respect, we’re all better off than we were before. For the girls to be important in caring for me was good for them and for me to be able to accept it was good for me.

And now we’ve made lemonade out of it and I’ve managed to grow up a little more. This was brought home during this bout of whatever we’ve had, as the ebb and flow of interactions was smooth and caring and it all felt good and right. Not sure why my brain is so full of old sayings and cliches these days, but it is, so here’s another that seems apt: it’s an ill wind that blows no good.

The trip revealed other interesting quirks: I’ve gotten so pleased with having a clean inbox that when the email came in faster than it was possible to handle it--especially with absolutely terrible email connections--it was very disquieting. And what it is about high-end hotels that charge outrageously for internet connections and then have bad connectivity, too? You can stay in a cheap hotel and have free wireless everywhere. As it was driving me mad that my inbox wasn’t so clean and tidy anymore, I made a folder into which I transferred everything I had to deal with on my return. This seems like cheating, but it sure did make me feel better about my inbox. Of course, the folder is full, but... you cannot have everything in this life. This small compensatory mechanism went a long way to peace of mind and seems cheap at the price.

Spring has sprung in Urbana and it’s beautiful. Green is good. Hope your spring is happening, too.

Saturday, April 25, 2009

Yes, and What Does It Mean?

Today, I couldn’t remember what the kitchen stools we had for more than 10 years looked like, what kind of car my dad drove for years or the word repudiate. Still cannot remember the first two, though the word wafted back into my head eventually. Is this brain surgery or senior moments? Who knows. Surely, it is a more positive thing than not to have had this medical adventure in middle age when forgetfulness was creeping insidiously along anyway, rather than in the previous years when it never happened and no thought of it ever doing so entered my consciousness. When the holes open up, which they do a lot, it’s frustrating, annoying and, at times, frightening. It’s relatively easy to compensate, be funny about it, keep going and to build connections with others over it, as the senior moment theme resonates with most of the people around me. None of that makes it comfortable. It would be nice if we learn on Wednesday that the medical tests revealed some imbalance in my brain chemistry that can be adjusted and that it will alleviate some of this. I’m trying to brace myself for another answer, and working on a positive attitude that will facilitate simply living with this from now on--including the possibility that it will keep getting worse.

On a happier note, Vancouver is breathtakingly beautiful, and we’ve had gorgeous, sunny, bright days in which to appreciate it. We’ve had a great trip and hope we can visit again sometime. The people are friendly and meet the stereotype of polite and nice Canadians. They also seem, to a person, to be acclimated to lower temperatures than we are. I rode in cars with a number of different drivers, and every single one opened many windows and sun roofs even when the air coming in seemed quite brisk to me. By all accounts, they had a hard and cold winter and even spring has been much delayed. (The Cherry Blossom Festival had to be cancelled, we were told, because the blossoms weren’t ready. They’re out now, and they’re stunning.) Maybe it’s the sunshine that made them all feel so much warmer than I did? Or my original theory about acclimating to the temperature range of where you live. Being so much colder than everyone outside made me think of our experiences in Grand Cayman after we got married. The lady who owned the cottage we rented, when we marveled at the climate, told us darkly to enjoy it, as they’d all almost died several years previously when the temperature had dropped for three days running. It go so cold, they almost all froze to death--it was as cold as 70 degrees three days in a row. Michael remembered an earlier visit he’d made to Newfoundland where the population was nearly perishing because it was 80 degrees. How could anyone be expected to breathe or move in such fatal heat?

Enlightenment hasn’t dawned upon me yet to explain why I’ve been thinking frequently about our front yard on this trip. There’s bound to be an interesting connection and I hope my addled brain (whether because it’s been traumatized or as a symptom of aging or some combination) will cough it up soon, as it’s frustrating me not to be able to close the loop. Here’s how the loop goes: When we bought our current house, we had grass in both the back and front yards. All these years later, we have grass in neither. We could still grow some in the back, except right now we have two young dogs and they’re harder on the grass than any other pair of dogs have been, so we finally just gave up and brought in loads of wood chips to cover all the mud. The front yard is a different story: the trees have grown so much that the encroaching shade preempts any grass. Even last year, we had enough grass that Michael got the mower out a few times to groom what was there. This year, we’ll have no grass anywhere. Michael and Shea started planting more shade-loving plants and ground cover a few years ago, stepping up the effort last fall with a whole slew of native woodland plants, as there simply isn’t enough sun to support grass any more. This year’s yard bears no resemblance to pictures from the year we bought the house, or Kearney’s first year, or even just a few years ago. The color and texture are completely changed, and it changes the look of the house. Both are nice looks and the house is still welcoming and attractive. It does have a different feel, though.

This gradual though dramatic change in the yard and how it frames the house seems significant in a way that I haven’t been able to connect to whatever is stimulating these thoughts. What does it mean for such change to occur? Has the train of thought been stimulated by the many AWOL memories and words? Something in recent work interactions? Some combination? Shea getting ready to go to college? I have no clue. If reading this from a distance, you see the link- undoubtedly plain as the nose on my face, as they say--please do share it with me. It would be a relief to connect it up and glean the meaning of the parable of the front yard.

Tuesday, April 21, 2009

On Being In Between

Being healthy is easy: you do whatever you want to do, have all the energy you need and take it for granted, turning all complaint instincts in other directions. Being acutely ill might not be easy, but it’s straightforward: you feel dreadful. Being and responding take most of your attention.

It’s the in-between state that seems most complicated to me: you’re not devoting full-time to recovery, and you can resume some of your regular life, but not all. In my case, I look like I always have and you cannot see any problems from short interactions. It’s just when I forget something that I said 10 minutes ago, or that I promised a student an extension (and even wrote email confirming it) or write nonsense on the blackboard, or cannot read a novel, or need to take a nap in order to teach for three hours, or ... you get the idea.

Don’t get me wrong. I’m grateful for all the progress so far. I count my blessings every day (and, no, Jill, I don’t sound like Oprah when I do it). My children have a mother and I can function at a pretty high level, especially in bursts. I can do a great imitation of my old self for several hours at a time most days. Not all days, but most. All days, I can work around the limitations and deficits.

None of that means that it’s comfortable and the hope that things are going to get better is a major component of my world view. If it doesn’t after another six to twelve months, well, we’ll readapt then. Until then, we keep hoping and watching for the signs that things continue to improve. We are still waiting for conclusions from the most recent set of blood tests, as well as what directions those might lead. We’re guessing they must not have provided the definitive answer, as long as it is taking the doc to get the results to us. Meanwhile, back on the road again tomorrow. Cheers.

Sunday, April 19, 2009

It's (Almost) Time to Open the Doors

We live in a drafty old house with high ceilings; in the winter, we don’t heat all of it. We’re getting to my favorite time of year when it’s time to open all the interior doors again. I love this house in the spring and summer, when one room pours into another and the lines of sight are expansive. Michael, always in charge of our use of resources for heating and cooling, hasn't yet opened up the house, but it cannot be far off. The wildflowers he and Shea planted last fall are blooming in our front yard so we have flowers beyond the daffodils and crocuses. Even better, I’m listening tonight to the April showers that are bringing us May flowers. (Does anyone other than old people say that any more?)

April’s schedule makes it hard to tell if we’re coming or going. The price paid for being over-tired is clearer all the time and, since I don’t like anything about it, skill at managing my energy is improving by leaps and bounds. Except that I still want to do more than is apparently possible. How can it take this long to get back to what used to be? The travel of the last few weeks has had a cumulative wearing-out effect, so Saturday, for the first time in a long time, I did not a lick of work all day. The day was frittered away napping, web-surfing, reading newspapers that had accumulated, doing laundry, napping some more, snacking... and then the day was gone. It was peaceful and very quiet. Michael and Shea were off looking at colleges, so other than talking to the dogs (and Michael on the phone, but he is a man of few words, so those were short conversations), it was quiet here. I wouldn’t want to spend every weekend that way, but it surely did help me regain balance. Good thing, too, since this week brings more travel. Did I mention that I might have over-scheduled April by a wee bit?

In Michigan, a woman at the reception after the event (that’s the one in which someone with my book in his lap had to remind me what I was trying to say) chided me for what she perceived as my minimizing having had brain surgery. I’ve been thinking about that on and off ever since, and it seems like a bad rap. After all, here we are more than seven months later, and I’m still not functioning at full capacity. No one is more acutely aware than I about what the effects of this adventure have been. (Well, let’s be fair about this: it’s entirely possible that Michael is.) The possibility of losing myself in the surgery was very real, and it was scary. On the other hand, we don’t get to choose what happens to us, only how we respond. What purpose is served by making this more than it has been? There was a tumor, it needed to come out and the only direction we had to go was forward. No one said “wanna go back before you got a tumor and try not to grow it this time?” At least, if they did, we missed it.

Maybe my feelings are defective? Or my sensors? Maybe I don’t feel enough what’s happened, or intellectualize it too much or... whatever. I can only experience this as I have, and for me, once the result was known, that they got it all and that it was benign, the drama part was over and what was left was the hard work of recovery and cultivating patience and grace. Those efforts haven’t been a totally unqualified success, but the process has been interesting and even fulfilling in a lot of unexpected ways. What else would have created the paragon of patience and calm I now am?? “They” say it takes weeks to months for adults to learn new habits and burn new neural circuits to support them. You cannot say we haven’t practiced our new habits with a vengeance.

As I told that reporter, if you leave aside the brain tumor part of this, it’s been a good experience. We feel more connected than ever with the many truly fine people we know and we’ve experimented with a new pace of life. We like it. (Well, most things about it.) And, it’s spring. Almost time to open the doors. Cheers.

Tuesday, April 14, 2009

Luxurious Problems

When you’re middle-aged and trying to figure out how to deal with your hair, that’s a good problem to have. Since the surgery, my sleeping habits have changed, and in consequence, my hair is completely different in the morning than it has been across my life. Side sleeping has been out since surgery, because the left side of my head at first had the staples and then was hypersensitive, and it was too painful to be on the right shoulder. Now, forming new sleeping habits--in my own bed, with Michael there, in my own house, safe and sound and all that accompanies it, not to mention having my faculties mostly intact--falls clearly into the problems that are luxuries, right along figuring out a whole new way to cope with bed hair. Not to mention being grateful for HAVING the hair that is giving me such fits every morning.

There are other good problems in this transitional period, some of which I’ve written about before: figuring out what my work identity is, for example, when to get work done, I must do so much of it at home. Despite some seriously anti-social tendencies, at root, I’m a pretty interactive creature at work and like being part of a team and having colleagues. Patterns of decades were lost when I recreated my work life some years back, and the rhythm that had emerged was a good one. Now, I’m re-imagining productive work all over again. This, too, is a good problem to have, I recognize, as I HAVE work, and it’s work that I like. I get this. Still, it’s complicated and confusing. There are days when I just want to give up. Perspective is all, especially recognizing how fortunate I am to have these issues with which to grapple.

I told someone that I counted my blessings for having $150,000 of medical treatment with no serious financial penalty, and he told me about the worries their family had had when their daughter--terminally ill with cancer--had surpassed $2 million in medical care and their fears that their insurance might be capped there. (It turned out to have a $5M cap.) There was a fast reality check.

This list could go on for quite a while. Even assessing the length of my list of trivial worries (in the scheme of things) feels self-indulgent and bad. Of course, my whole outlook is a little self-critical right now, given how badly overbooked this month is, which is all my fault. My outlook is even greyer today as the three-blood-draws-over-an-hour-following-the-stimulus shot didn’t go so well this morning. We’re hoping for results soon and that the results mean that we can mess with my brain chemistry to jump start my pituitary gland and hypothalamus in ways that will improve daily life. Stay tuned.

P.S. We got the videos from my father's memorial service posted on YouTube; Kearney's talk was great and I managed mine in a way that was honest and still appropriate to the occasion. Email me if you want a link to it.

Saturday, April 11, 2009

Seven-Month Status Report

As we hoped, the six-month mark has proven to be a major turning point in this adventure. I’ve had more energy, fewer symptoms, and a better quality of life since the six-month mark than before it. The symptoms that remain all have livable workarounds, so long as I remember to take precautions and pace myself. Of course, we are still learning what proper pacing is, but we’re getting better at it and have fewer collapses or total breaks in activity. Overall, I can do most of what I want/need to do, as long as it’s planned, includes breaks, and as much as possible happens from home where I don’t get overstimulated, or whatever it is that causes the array of reactive symptoms. Michael pointed out today that the wildflowers we planted just before the meningioma/brain tumor was diagnosed are all coming up in our front yard--it’s a nice metaphor for my own re-emergence into a fuller life. Plus, the front yard (very shady these days) will look better than it has in years (we hope) with appropriate woodland plantings.

Here’s a status report from the top down:

-- the incision is almost completely healed: it’s difficult to find over most of its length. The same patch that has been a problem since the beginning is the only place that still has any strangeness. Yesterday, a new bump appeared on my head, which if it were larger we would have called a goose egg; it’s small enough that it’s more like an easter egg. Maybe it’s season-specific? It’s quite sore and Michael keeps quizzing me about whether I’ve banged my head on something. All I can say is: not that I remember.

-- scalp: the sensations in the area of the scalp that was peeled back and then re-attached, said to be the last symptoms that go away, are dramatically reduced both in size and sensitivity. The area that is "not right" is considerably smaller than the palm of my hand and not nearly as odd as it was at first. Areas that used to be weird are now fine, and the sensation of touching them is just like touching any other un-operated-upon spot. The remaining area doesn’t hurt, exactly, it’s just a strange combination of hypersensitive and numb. As I discovered last week, airplane seats hit that area precisely in the sorest spot. Exercises that involve lying with my head on the ground aren’t possible unless I can turn my head to the right to rest on another part of the scalp; the nerve endings (or whatever) are just too unhappy to experience direct pressure.

-- dents: I have a number of dents in my skull. One evening after the memorial service for my dad, some of the family were feeling the biggest and one expostulated “that’s not a dent, it’s more like a ravine!” Dent or ravine, whatever word you use, my skull these days has significant topological variation.

-- brain reoccupation of the tumor void: we have copies of the most recent MRI and Michael will try to read them and extract one we can post. The news on this front was very good--95% reoccupation, which is better than we’d been led to believe would occur. Evidently, the news here is all good. We celebrate!

-- right shoulder and arm: More than at any point since they stopped working at 3 a.m. the night after the surgery, these are back in service. There is still a discrepancy between the range of motion on the left and right sides, but I can reliably write on a blackboard and erase it, shift the gears in the car, lift light weights and control them in my right hand, etc. If you’re not watching too closely, it’s a very good imitation of complete use of the arm. Sheila, the wonderful Occupational Therapist, believes that the symptoms we see are more indicative of central nervous system issues than muscular/skeletal ones: some signals in my brain are still not reaching the intended destinations properly. My shoulder still takes odd “detours” in certain motions, the range of motion is limited, and when I get fatigued, my arm pretty much stops working.

-- still completely medication free! (This may change, see below.)

-- other extremities: no symptoms! No tingling, no loss of feeling, etc.

-- overall energy: mixed. What I believe to be visual overstimulation still does odd things, and strange mixtures of places and people trigger the effect. We don’t know for sure that it’s visual overstimulation that does it, that’s just my best effort to pin it down. I still take more naps than ever remembered in my previous life, but so long as I draw out the length of the day, almost everything that needs to get done can get done.

-- cognitive deficits: many remain, though relatively small in the overall scheme. It’s hard sometimes to figure out what are ordinary aging and what are brain tumor/surgery effects. Now and then, there’s a gap that’s pretty clearly (at least to me) brain surgery caused: writing a different word than I’m saying, losing track of conversations, etc. I still cannot follow a sustained written narrative, so reading for pleasure continues to be completely absent from my life. This is a loss and pretty clearly tumor/surgery-related. Since I have had sporadic events where this ability returns, we remain hopeful that it will come back eventually. I’m agnostic as to the cause of how often I lose things nowadays, and what causes not being able to come up with words: those could be either. On Friday, we got email from the new doctor. He has ordered another round of tests based on anomalous blood results. Apparently, my cortisol levels are very low, which could be related to the course of steroids and my pituitary and/or hypothalamus not restarting after the course of steroids. I’m scheduled for a stimulation test to move this diagnosis along. According to him and consulting endocrinologists, that could explain some of the mysterious symptoms still seen.

--balance: mostly restored. I can walk stairs without a second thought these days (that’s a gift) and rarely if ever actually fall down when experiencing the vertigo from the overstimulation.

--miscellaneous stuff: the hormone surges continue, but are reduced from their very unpleasant peak. This, of course, may be related to the cortisol issue. Or not. Headaches now fall into the miscellaneous category (yeah!) though they’re at a higher incidence and severity level than one or two months ago: that may be due to stress and my very poor management of April’s schedule.

What does it mean to have had a big brain tumor? I have no clue. I had a medical problem, there was a way to deal with it, we chose it, it happened, and now we’re dealing with the aftereffects. I don’t feel like a brain tumor survivor: it’s true that I had a large (though benign) brain tumor and five hours of open brain surgery to remove it. On the other hand, there’s nothing about the tumor or the surgery that defines who I am or how I think about myself. I have a better body awareness than I’ve ever had and, still, I don’t really trust my sensations or my ability to interpret them reasonably. My first response is to ignore the signals and to minimize them; guess this explains why the tumor got so big before being diagnosed. Even having learned this lesson over and over, I still don’t trust my perceptions and believe that working through sensations is the way to go. It would be good if I could manage to reconcile my instincts and my sensations. That’s going to take more work.

This got long, longer than probably is worth reading. Overall summary: we have been so incredibly lucky, and in so many ways. In access to quality medical care close to home, in diagnosis, in having a benign tumor that was fully removable, in recovery, in the state of medical science, you name it, lucky. Most of all, though, we know an extraordinary and wonderful group of people who have supported and carried us through every single step of this very odd adventure. We are lucky to know you. Thanks.

Wednesday, April 8, 2009

Onward and Upward

The park district referendum passed yesterday, which is great news for Michael (president of the Park Board and leading the referendum effort) and so did a sales tax increase for the schools. Amazing and wonderful, especially in this economy. Life will begin to get less hectic in our house with this behind us. The presentation on Monday went better than feared and not as well as would have been nice. It went, though, and there were things to be learned from it to do better next time, so that’s all a gain.

During the travel, I learned that an airplane seat hits the remaining small tender area on my head with great precision. I’d learned this lesson once before (how often have I written that???) and figured it shouldn’t be an issue this far out from the surgery, so didn’t even think of taking my neck pillow with me. It’s a pain to carry around (even the blow up ones are a pain), and I’d always rather travel light. However, it was a bad call. The remaining tender area isn’t very big, and it’s not noticeable in regular life between the buckwheat pillows and natural adaptations to things that are sore. As I set off on the next trip, though, a neck pillow will definitely be on the list.

For most daily work, I’ve switched entirely away from Microsoft Word and except for the fact that the spell checker in Pages isn’t very sophisticated or as useful as Word’s and one or two clunky steps required, I’m completely content with the shift. It’s been an interesting exercise to learn new software and surely is good brain exercise if nothing else. Brain exercise seems important, as the cognitive gaps and deficits remain vexing: on Monday, talking about a concept I’ve written and talked about for years, I had a sudden blank and couldn’t reconstruct a key bit. There was a guy in the group who had my book (and obviously had been reading it) who said “oh! that’s in your book,” found the page, read the relevant phrases out and got things back on track. He was nice about it and I thanked him, and went on, trying not to show how foolish I felt. That kind of event seems far more likely to be attributable to brain surgery than plain old aging, though some of the other problems I see could easily be either. Whatever the source, the blank spots are frustrating.

Over the past few weeks, one of the exercises that’s been reintroduced into my routine is one that I’d been trying to do in the summer before surgery and just couldn’t do because it triggered such intense headaches. (Now we know why; at the time, my worry was that my aversion to the exercise was psychosomatic because I didn’t much like doing it and thus was coming up with excuses to avoid it. Guess I wasn’t as crazy as I’d feared.) Nothing about moving my head and neck that way trigger headaches anymore, but a deep aversion to moving that way remains. It’s a strange experience and one that involves a series of intellectual moves first to figure out why I’m reluctant and then to remind myself that it won’t hurt this time.

This business of trying to find a balance between paying enough attention to what the body is saying and not overreacting to what might be passing whims is complicated. Why is it so hard to reach balance in so many dimensions in our lives? Why is this aspect of being a grown-up, along with several others I could list, so tedious?

In any event, the hard part of the week is over and the rest holds some good stuff and some events that just require work and concentration--paying attention, all the while, of course, to the overall balance of energy at any given time. I do wonder if this balancing act will ever come to a graceful end, and then step back and remember, yet again, that these are the good problems to have and how lucky I am to have them. Perspective is such a great thing. Here’s to a healthy perspective on all our endeavors. I hope yours are going well. Stay in touch.

Monday, April 6, 2009

Socks Up

Rest is A Good Thing. The whole world looks different--and better. Today brings a presentation about which I’m nervous and for which I don’t know what to expect. It’s likely to take a lot of energy and, as I’m learning, that is a commodity to be used sparingly and wisely, whether I like that reality or not. (I don’t, if you had any question in your mind. Since I don’t get to choose, though, let’s just move on to the next item.)

Having left Urbana where there were crocuses and magnolia and cherry blossoms, I’m in the land of active snowing. I like Spring better, even the April-showers-bring-May-flowers part, though Michael tells me home got some snow, too, just not as much as here.

Do kids learn any of that stuff any more? Do people talk that way any more? If they do not, why not? When did we stop sharing nursery rhymes, aphorisms and common bits of collective wisdom?

More later after my prudent resting and wise use of energy today. Wish me luck. I hope there’s real Spring where you are, and not winter's last gasp. (At least, I hope that's what this is.)

Saturday, April 4, 2009

The Doldrums

On the one hand, there’s a good reason when I cannot do all that I hope to do. On the other, it gets old, frustrating, and so, so discouraging when I simply run out of energy. Today, the stress and pace of the last two weeks took their toll, and while I was up and working in the early morning, I soon simply ran out of energy to stay awake, to resist the headache of every recent morning, to keep going. After more hours of the day spent sleeping than is comfortable to tote up, things got going again, but my reservoir has been depleted and isn’t yet refilled. That’s both in the general case and in the specific one of the last two weeks. The coming week requires even more careful management than this week did, as I’m traveling and that’s a tricky balancing act in this post-surgical reality.

Feeling around on my skull tonight, the dents and valleys are more pronounced than ever. As Pollyanna AKA Michael points out, this is the good news: the swelling continues to recede. Also, the weird area of my scalp has shrunk in size and in its sensitivity. Exercises I used to fear because they triggered headaches no longer present any except a barrier of anxiety/trepidation, which always takes some time to pinpoint: oh yes, that used to cause big headaches, and it doesn’t any more, so it’s ok to keep going even as all my instincts are screaming “don’t do that!”

I miss reading.

I miss going about my life without planning and anticipating every single expenditure of energy.

I don’t miss the constant headaches. I don’t miss the general greyness of last summer, and I don’t miss feeling like a total klutz from falling down regularly.

I’m happy to be alive and still part of my family’s life with most, if not all, of my personality intact.

I miss being funny. I have still a large repertoire of laugh lines left over that come out at the right moments, but I’m not sure I’ve made any new or interesting observations about the world in quite some time. Is this still me?

Whatever it is, making the best of it is the best choice there is, so I’ll pull up my socks again and go with it. It will be nice, one day, not to have to think about this unremittingly, just as I no longer scheme about how to get down a flight of stairs, sleep on my left side, or write on a blackboard. It would be nice if not having a tumor recurrence would have made everything better. Only now is it clear I’d pinned a lot on that, and that it didn’t carry any magic, except the biggest, best and invisible kind.

Bleah. Taking a deep breath and trying to look at the bigger picture, here’s back to regularly scheduled life, where there’s so much to appreciate and enjoy.

Friday, April 3, 2009

Great news!

We just heard from the neurosurgeon’s office: “no sign of nodular enhancement that would suggest a recurrence of the neoplasm.”

No recurrence of tumor!

The brain has reoccupied 95% of the tumor void. (More than they told us to expect.) “Observation of post-surgical change in the parietal region from the meningioma resection. Stable to mild decrease in gliosis/vasogenic edema.” (swelling continues to recede)


Another scan and check-in with doctor in one year.

Thursday, April 2, 2009

Then and Now

Yesterday’s MRI went much better than previous ones, in part due to acclimation and knowing what to expect. My scans last somewhere between 30 and 45 minutes. Looking back at the first one in September when I had spiking blood pressure near the end, there wasn’t really adequate advance explanation of what to expect and how long it would last. Having had several by now, it’s easier to pace myself and go with the flow.

We’re not sure when we’ll hear from the doctor about the results; he said he’d call once he got them. I’m ready for the results. It’s becoming clear to me that the concept of recurrence--even for very slow growing tumors, which meningiomas are--has been weighing on me. It will be nice to know the results, whatever they are. We are expecting good news, especially since they got it all during the surgery, and that’s the best prognosis. On the other hand, I’m in the highest risk group for recurrence, so the early news will be welcome. I’ll have scans once a year for the rest of my life to monitor for recurrence, and it would be nice to start now clean. We’ll see what we see. (We’ll know more next week?)

What was particularly noticeable yesterday was the enormous change in staffing level at the clinic since my last MRI--it’s way, way down. There were fewer receptionists, no visible nurses, and fewer techs. Some of the scanning (and related staff) have been moved to the two new satellite clinics in town, I was told, but that explanation doesn’t really cover what I saw yesterday. Some of the process was more efficient in its streamlined approach: go straight to the MRI waiting room, don’t take an intermediate stop in the general scanning waiting room, for example. On the other hand, the MRI waiting room no longer has a nurse/tech in the adjacent station to insert the port for the contrast solution--the techs in the MRI room did all that themselves. Similarly, there were at least two techs on hand for all my previous scans, usually more, and this time, it was one person operating alone. I was told that “the other” tech had gone to lunch and would be back later, and indeed there was another person lurking about when I finished, but that was it, without any evidence of others around. Their department (the whole clinic?) is operating under both a pay and hiring freeze, I learned, so it seems likely that they’re down more staff than just dispersion to the satellite clinics explains--and surely they don’t have MRI machines at the satellite clinics, only x-rays and the like? It was a surprise to me and an unsettling indication of how the economic situation is rippling through this community.

This afternoon is chock full, booked back-to-back (including the last communication session for medical residents) so the morning must see production of handouts due for a talk next week and anything else today is going to produce, so we’re off and running again. Michael’s referendum (park district funding) is next Tuesday, so he’s going full blast, too. It will be nice when we get through this period. On top of the memorial service, etc., this is a lot for current stores of energy.

Is it the weekend yet?

Wednesday, April 1, 2009

Still Processing

As soon as the weekend’s events were over, I moved right into an intense and busy period, with a heavy teaching schedule this week and lots of travel next week. Almost immediately, I was reminded that my stamina is not what it used to be. Isn’t it nice, though, that I was able to forget that for even a short while? We’d been paring down obligations on the calendar in anticipation of the need to balance them with available energy, and then we needed to go through and do it again. Monday and Tuesday were intense and focused--and got done what needed to be done. Today is incredibly chopped up with appointments: OT, PT, the follow-up MRI, an out-of-town visitor, a haircut, etc. And there are two more biggish things that need to be accomplished, and soon.

Still, I’m feeling really good about having gotten through both the weekend’s events and the Monday-Tuesday marathon. In the back of my head, though, a little voice is issuing warnings. Something about pride goeth before the fall? So, while we’re all still feeling good about having pulled off a complicated series of events gracefully, I’m trying to pay attention to the signs that there’s still work to be done in processing all the complexity of the family gathering--signaled by the truly bizarre dreams I’ve been having.

Physically, things are continuing to improve: I walk up and down stairs without having to stop and really concentrate on it anymore (though I still am careful always to hold the railing and stay near the edge--the centers are still a little worrisome), my right arm has more mobility than it has since this adventure began, the incision is completely healed. In the cognitive deficits realm, problems persist. They’re mostly minor ones--if you don’t count not being able to read a sustained narrative--and I’ve learned a whole repertoire of responses for those circumstances when people just look utterly confused at something I’ve said or done. If I’m paying enough attention, I think I usually catch these and I can either rewind to correct whatever I said wrong or overlooked. Yesterday in class, I mixed up the readings--which I’d re-read just that morning--which is the kind of mistake I never used to make. That was an obvious one, since there were 100 students in the room and a pretty large number of them were engaged and tracking. Of course, who knows what I’m not noticing. People around me continue to be reassuring that it’s not visible to them how impaired I feel, so I keep putting one foot in front of the other. There isn’t any other choice, of course, so I’m trying to be cheerful about it and to keep looking on the bright side. Here’s one: what better excuse for being forgetful or using totally the wrong word than to have had a brain tumor? It’s a pretty high-class explanation. I just hate, as Kearney urges me to do when necessary, playing the brain tumor card. Still, my hopeful side thinks maybe even that is lessening in frequency. Again, though, would I really know reliably? It’s a conundrum.

I haven’t had time to figure out YouTube yet: we got our two sample snippets of the memorial service uploaded there and Michael and I can watch them, but we haven’t been able to figure out how to make them available to anyone else. Maybe it’s really obvious, but we sure haven’t found a way in the time we’ve had to think about it. What this calls for is a young person. Unfortunately for this task (fortunately in other respects), Shea isn’t plugged into that aspect of the subculture, so we’re just going to have to set that aside for a few days--maybe even until after the travel is over next week.

Onwards and upwards. At a deliberate pace.