23-Month Status Report: Counting Blessings, Redux

Our trip this summer and some recent web-surfing I’ve done has solidified for me, 23 months past surgery, just how lucky we’ve all been through this process and how very many blessings we have to count. First of course, is the fact that the tumor was benign and we had access to a first-rate neurosurgeon who works five blocks from our house. Beyond that, though, was the extraordinary outpouring of support and love we received from so many through this adventure. It sustained us in more ways than you’ll ever know.

The past few years, we had a chance not everyone gets: we got a signal that it would be good to make sure everyone we love knows the depth of our feelings and how much we value each one. And the love we got back was powerfully healing. It insulated us from some of the worst psychological effects that many meningioma patients experience, and that’s an unbelievable blessing, too. While I’m acutely aware that I’m not what I used to be, this version, in this life, is a good place to be.

The travel back, which while relatively smooth as these things go (one flight delayed two hours causing one of those frantic runs through an airport, only to arrive and find that the connecting flight was delayed anyway, luggage that didn’t make it home with us, etc.), underlined for me some of the changes in me this whole experience has brought. For one thing, hard as this may seem to believe, I’m more patient, and more able to let go of things I cannot control. That’s a huge positive step forward that makes our lives that much better. All that practice at slow haredom seems to have paid off. Slowly.

I’ve learned to pace myself better for my current energy reserves, and I automatically built in time to recover from the visual/auditory overload such a trip necessarily entails. It was close to automatic, and I’ve learned to be more accepting of the fact that there are times when getting up and going just isn’t in the cards, like yesterday after the return. I got the mail sorted, laundry done, and, when the suitcases eventually arrived 28 hours late, the unpacking.

It was a good trip, though my writing output was a disappointment. The work in progress took some serious wrestling over structure and direction, and while I got some words on the page, the result was far, far fewer than I’d hoped. Still, I think (hope) that maybe I’m on the right track now, thanks again, to dear friends and readers who were willing to spend time exchanging ideas and nudging me back when I fell off a sensible path.

So, for the status report 23 months later, things are good. My skull has huge dents and it clicks. I still lose my balance when I get overly tired and/or end up in visual/auditory overload. Getting tired happens almost instantly: I go from fine to collapsed with not much warning, and in a new strange artifact, when I push past that point out of necessity, my brain does something I can only describe as clunking all night after that: it fixates on two or three visual images, and they repeat all night. Over and over and over. It reminds me of the sound a tennis shoe makes in the dryer. It’s unpleasant enough that I’m getting pretty adroit (brazen, even) at cutting off whatever is going on and going to bed when I feel that point approaching. That’s been a big change. My shoulder needs more exercise than it gets because it’s a hassle to remember, so it still freezes up now and then. Still no consistent ability to read fiction, though I practiced all summer in small and medium doses and am ever hopeful that will come back. If it doesn’t, I’m finding ways to fill both my craving for narrative and for getting my mind to shut off and focus on other than work. I’m not exactly meditating, but I’m managing my fixations better, all part of this slow haredom that I seem to be settling into. And, now that I’m home, it’s time to start getting serious about all the weight I’ve gained through this process, and I think the emotional energy and discipline might be available to deal with it, finally. I hope. That’s a hedged public commitment!

Most of all, though, is the blessing that all of you are who rallied, helped, encouraged, cared, and were constantly with us through this part of our lives. Thank you, again and again.

Differences are Good: A Cranioversary Theme?

Among the lovely things that travel brings is a change in topics of conversation. Michael and I try to walk every day--at least every day when my balance isn’t totally wonky, when my knee isn’t acting up, and when the rest of life isn’t so crazed that it’s yet another obligation instead of something peaceful, healthy and calm. Changing locales means there are different things to notice and to talk about as we walk, which is always nice, because even though we take different routes, after you’ve done them for years, they do start to become more background than foreground. When we’re here, though we do some of the same walks regularly--the yacht basin is one of our favorite places, both because it’s flat and because it’s a different universe--with a gap of a year since our last visits, there’s always a lot to notice.

It’s on these occasions that the differences in our interests becomes most clear. Here’s a real conversation we had yesterday, walking along the Croisette, where there are many tony pay beaches, always an interesting spectacle.

Me: “Oh, look, here’s the same man setting up as last year, but the theme and the umbrellas and furniture are all different. It’s pretty!”

Michael: “Do you think the bathrooms here are below the sewer lines?”

Me: “huh?”

Michael: “That truck has a line down to the beach buildings, and it’s clearly sucking something liquid back up to the truck, not supplying from the truck to the beach. Do you think it can be sewage? I think it has to be.”

And that about sums it up. On the yachts, I notice the people and the size and the accoutrements, and he’s looking at their antennas and the cars parked across from them. I’m speculating about the people, and he’s looking at the equipment. In the parks, I’m looking at the people and the dogs, and he’s looking at the species planted and the watering system.

Or, walking in the neighborhood:

Me: “What a great view that house must have.”

Michael: “Right. And look at that! Wow!”

Me: [confused] “What? I don’t see anything. What am I looking at?”

Michael: “They buried their power and phone lines since last year!”

So, today’s 22-month cranioversary theme is how good differences are. Cousin South detected a change in my topical theme, about the time I changed the color of the blog, to one of reinvention, figuring out what to do with what I am now. That seems about right, and I was glad to hear it! It's amazing how often our friends detect what we're feeling before we do, in these realms. As for the status report, from the top down: the head clicking is newish and definitely weird; I’ll ask some doctor about that, sometime. Reading fiction and comics and doing certain mental activities comes and goes; my thinking processes are definitely different than they used to be, though certain facilities, like synthesis, seem to be improving steadily. I’m restarting all the shoulder exercises after letting them lapse, because it’s freezing up again and doing all its weird detours when moving up or down, though side to side is fine. So long as I’m willing to ask for and accept help, I can navigate stairs and since, mostly, I like life better without lots of crowds and loud noises anyway, the fact that I don't do well in those settings is not usually an impediment. Bottom line: I’m different than I was, and how I am is ok. It’s a journey, not a destination, as they say.

I’ll probably do status reports only through 24 months, because that’s about the outer limit of when positive changes can be expected, though someone recently told me that she’d seen the final real improvements five years after surgery. In any event, two years seems like more than enough attention for this thing that was in my brain. The book stuff is going v e r y slowly, but at least that's likely because writing is hard, not because of my broken bits, and I’m trying to keep at it consistently. My editor told me she thought I was probably one of the only authors in the history of the world who asked “who would want to hear what I think about any of this, anyway?” and (in the nicest possible way) told me to stop being such a girl about it all and get on with it; she’ll worry about the audience if I just write the words. So, off I go to try to write more words, hoping very much that, someday, there might be something someone, anyone, might want to read.

It’s a pretty nice life, sitting on the terrace trying to write words. Of course, it's even nicer when not trying to drag words out through fingers onto the screen: last night, Michael opened some champagne, just to celebrate how nice it is to be here, with each other, in this nice place. My wish for you is that you make time to stop and celebrate the nice elements in your lives. While you're at it, notice differences. They're good, too.

21 Month Cranioversary, Plus One Day

It’s been a long pull, but each and every one of the big projects with deadlines is over now, and successfully. I’m still a little numb and, so far, about all I’ve taken in is how good it feels to stop. This intense patch went in two waves and, as has been clear from my absence here, resulted in a pared-down life focussed entirely on putting one foot in front of the other. The deadlines were in two waves, and the first wave was bigger than the second.

After that first wave, when both the huge proposal and the conference were complete, we got home on a Saturday night. All I wanted was ice cream for dinner. It’s hard to describe how deviant that is in our lives, which are generally pretty well-ordered. We make the bed, eat dinner together at the dining room table, wash the dishes and keep the public areas of the house tidy and welcoming for family and guests. We exercise (Michael more seriously than I). Michael, the cook, makes sure we have a protein, a vegetable and a starch at every meal. Our food habits are healthy and don’t include caffeine or sodas, much processed anything, etc.

Still, upon arriving home after a long day of travel, following a long and intense stretch of work, the only thing I wanted for dinner was ice cream. From Jarling’s. Size Big. Since I didn’t have to worry about the consequences of this choice for anyone but me, that’s what I did, by way of celebration and punctuation. Michael, of course, ate a balanced meal first and then had his desert. Size small.

It bothers me that I didn’t take more satisfaction from doing the two big projects, and doing them well, and that’s something I want to think about more: when I do well, I want to feel good about it, not just listen to the inner script that says “yes, that’s what you’re supposed to do, so what about it?” I’m ready to shed, for good, the “day late and a dollar short” tag my father hung on me, as it wasn’t right then and it isn’t now. My new goal is to feel that as well as to know it. Stay tuned on that front!

As for the 21-month cranioversary, plus one day, things are good. The intense stretch I’ve just been through wouldn’t have been possible last year or even six months ago, and certainly not the summer before diagnosis. It’s a great demonstration of the long road we’ve all traveled together and the tremendous gains of the journey. I’m not what I used to be, both in positive and less wonderful ways, and that’s ok. It’s all manageable and I am keenly aware each and every day that mine are the good problems to have.

The key is that my children still have a mother and that I can work, and successfully. The other stuff, including the need constantly to manage my energy and watch my balance, is becoming second nature. I’m more graceful at asking for--and accepting--help, which is overall a net gain, I think, in my overall growth and maturity. The continuing balance problems are the most visible remnant of my medical adventure, having stabilized at, well, unstable. After a long period where, with seriously focused attention, I could navigate stairs alone, that’s no longer possible, especially going down, without assistance. This gets worse as I get tired. I’m hopeful that this will attenuate some as I get less stressed and more rested. If it doesn’t, that’s ok. I can do this. The ability to read fiction still wafts in and out, and I remain hopeful it will click back in for good sometime.

My head and its dents are something I’m still aware of, though not anyone else--except now some TSA workers in Boston. I got wanded at their security station this week, and my head beeped. This resulted in what felt like about 600 people feeling my head and its dents, searching through my hair to assure that I hadn’t hidden anything in it. I’ve long since stopped carrying the document that explains the titanium spacers in my skull as they don’t set off the walk-through metal detectors, so that was a less fun moment. Fortunately, I had plenty of time and still made my flight. And washed my hair when I got to the next hotel.

As I continue to integrate this strange experience into my life, I’m discovering that a lot of people apparently harbor fears that they have undetected brain tumors. People who have heard through some grapevine about my surgery often seek me out and ask how the tumor came to light, and then tell me about their own concerns. This has happened often enough by now that I’m getting used to it, and hope that my responses are suitable. Who knew? It’s so easy to overlook or discount the stories everyone carries, their hopes and fears. That’s worth remembering and factoring in more often: we need to be more gentle with each other, as a daily habit. I’m going to try to start with myself so I can offer more to others.

And what I’m going to offer to myself, now, is a day away from my computer. Cheers.

20-Month Status Report

Not long ago, I wrote about the sensory memory of how it felt trying to sleep when there were still staples in my head. A few days later, the reason for the strength of the memory came to me: every now and then of late, my head hits the pillow oddly and re-awakens some otherwise-inactive nerve endings. I’ve been activating those spots more often lately, and I think that triggers both headaches and bad dreams.

This far out from surgery, it seems likely that what you see is what you get, and dramatic changes are not likely. The question that seems open is whether my scalp will ever return to normal, and if it isn’t what it used to be yet (it isn’t), does that mean that it, and other things, might still progress in a positive direction? At our first office visit with the surgeon after I’d been released from the hospital, we asked about the scalp weirdness. Our understanding is that it stems from the skin being peeled and then reattached, if that isn’t getting too graphic. It’s been both hypersensitive and sort of numb, which is a strange sensation indeed. The surgeon mentioned, off-handedly, that these effects are the last thing to go away in the healing process. So, since there’s still a small area where my scalp feels strange, does that mean healing is still happening and it will get better? Or, does it mean that there will always be a zone of oddity up there?

Aside from the scalp and the major dents in my head, the remaining craniotomy/tumor effects are a subset of those I’ve been writing about pretty much since the beginning: trouble going down stairs, energy shortagess, some cognitive deficits, and the odd overload condition when in loud and/or visually distracting situations. Two recent experiences have reinforced that these effects are triggered most often in the middle of crowds. Being at the edges of a room/crowd doesn’t seem to have the same impact, even if I’m presenting or talking to the crowd. Being immersed in a large group seems to trigger the effects--which can include falling down--every time.

At a large awards banquet not long ago, the combination of the noise and the visual overload of all the people robbed me of my balance: when it was my turn to speak, I had to ask a friend to walk me to the podium and back. My gracious good friend was, of course, happy to help, but it was hard to ask and even harder to accept that it was necessary. Not too many days later, at a crowded school board meeting, I lost my balance again. The noise and sense of being swamped by all that was going on was overwhelming.

It’s particularly vexing that I don’t always recognize in advance when I’m going to lose balance, poise and stamina. The insight that it seems to have something do do with being in the center, rather than at the edge, of a room is an hypothesis we’re going to be testing. We’re going to a large conference in June, and it would be good if I could last for two days’ worth of activities and participate/enjoy the entire event.

The grades for one class, the smallest, are turned in. The two big classes still have a ways to go, but I have faith that one foot in front of the other, repeatedly, will get me to the finish line.

It sounds like we’re going to get a major spring thunder-boomer, as our girls call these storms, tonight. We’re both looking forward to it. We can already hear the fairies dancing on the roof (the way my mother used to explain the sound of rain), and the rumbling of their drums promises one of the great spectacles of nature. What could be better than being home, safe and sound and cosy in bed, during a midwestern thunderstorm? Life is good.

18-Month Cranioversary; Status Report

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

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

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

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

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

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

17-Month Status Report

Three things stand out, this far out from the surgical portion of this brain tumor adventure.

1. I’m surrounded by some of the most magnificent family members and friends anyone could ever ask for.
2. Things are improving, though infinitesimally slowly.
3. I’m a different person than I was before.

Physically, from the top down, the most acute portion is that I have some kind of floating chip loose in my scalp and an area that’s extremely sore when lying down. Interestingly, it’s not so apparent nor does it hurt so much (it's just tender) when vertical. In the areas where the scalp was peeled and then reattached, there is still that same old area, about the size of my palm, that’s strangely sensitive and numb at the same time. It’s hard to explain, and we were warned that the scalp would be the last to heal. I’m still waiting for that, as a sign of somethingorother. My skull is very bumpy, more so than was detectable when there was still minor swelling here and there. Still, it doesn't show and you have to be feeling for it to notice.

Connected to my head/brain, my balance is still bad, worse when tired, visually distracted or in loud places. The wonderful people around me do a constant dance, adapting to places that I’ll need stabilization or spotting. I’m not sure how much they notice it any more, but I notice it all the time. My family and the people who spend the most time with me automatically shift into place on stairs, on uneven terrain, and whenever I start to tilt. I’ve learned a lot about asking for help gracefully when out in the world and confronted with something I cannot navigate on my own. I’ve leaned on, held hands with and generally relied on people across campus and out in the world in ways I never would have imagined. Without exception, people are charming, kind and gracious. I hate needing the help, even as I’m grateful for it.

My energy has to be managed really carefully, something that is a daily struggle for me, as I haven’t yet succeeded in re-setting my internal reach/grasp reality meter. Still, over time, gradually, my energy levels are creeping up. One happy metric is that ten hours of sleep a night is not absolutely mandatory any more, and the point at which I completely hit the wall and run out of steam is drifting later and later in the evening. One of these days, maybe I'll be more like real grownup people again.

My shoulder and arm are better than they’ve been at any previous point. I can do most of what my left arm does with my right, though its range of motion is more limited (by a fair amount) and it still clicks, especially when coming down from above the shoulder. The shoulder itself remains tender and I cannot sleep on my right side. I do exercises sent home by the physical therapist in hopes of strengthening and improving the shoulder/arm. Every now and then, my hand goes completely numb. It's not always clear why.

I think that’s the physical inventory. Psychically, I’m simply a different person. That’s not bad or good, it’s just true. Cognitively, there are things I used to do and saw as integral to my Tina-ness that are gone. It’s an adjustment, and it’s hard, even as I count my blessings. This could have been so very much worse, so where I am is something to be grateful for. I am. I just also feel a low-level sense of loss most of the time. I am still not reliably reading for pleasure. Things I used to do without thought require huge quantities of time and planning, and they don’t turn out as well. I spend much (much, much) more of my time at home than ever before in order to be able to do any creative/high level thought at all, as I get completely fatigued in new or bustling places. I keep trying, and stretching, and I see some progress there. Very slow progress. Some forms of synthesis and creativity are notable in their absence. See remarks above about energy and relying on other people for some basic stuff. I’m calmer and more patient, which feels good and like an advance up the evolutionary scale. Juxtaposed with the losses, fundamentally I’m the same person: same sense of humor, same take on the world, same personality. Just less.

More and more, having had a major brain tumor is receding from centrality in my daily life. That’s a wonderful thing. I feel greedy to want it to recede some more, but there you have it: I do want that. Now, back to the backlog of stuff I cannot seem to slog through. One foot in front of the other…

The snow is still all white and pretty. There’s not much wind in town, so while the roads are evidently pretty bad, around our neighborhood, people are driving and walking and biking and it’s a picture-perfect snowy day. Lucky me, I’m going to Albuquerque on Friday. I’m looking forward to it, if only I can get some of the work done before then. Cheers to all.

Belated 16-Month Status Report

The main thing bothering me these days is my lack of stamina. Yeah, the shoulder and the strange visual vertigo thing are still issues, the scalp is still a little odd, the balance goes now and then, but those are all manageable, or ignorable. The thing that I’m having the most trouble figuring out is my energy. It doesn’t really seem reasonable to me that one long day should be followed by a day with almost no physical exertion because there isn’t any energy to do anything at all, or that something pretty normal, like travel, should carry the price of several nights where ten hours of sleep seems to be required. That doesn’t leave much time for life’s productive endeavors. There also doesn’t seem to be much choice about it, so I’m back to the task of adjusting my attitude, and finding ways to enjoy slow haredom.

The next measurement of my cortisol levels now that I’ve been off steroids for a while is still a couple of weeks away. It feels, on a daily basis, like it should be possible to do without any more external rebalancing of my brain chemistry, and I hope that turns out to be accurate. While I hit the wall after I’ve had a day of serious exertion (the 16-hour trip to Atlanta and back, for example), in general, I’m getting along from day to day. The overall energy available is lower than ever before, which continues to be deeply disconcerting, but it’s also nice to be off the steroids and, in the world of tradeoffs, I’d rather be med-free and learning a new balance than to be back taking stuff with such unpleasant side effects. Among other issues from the meds, I’m at a peak weight for my entire life, weighing now even more than when I was 9 months pregnant. This is disheartening to say the least, especially since our eating habits are pretty healthy and sensible already. I’d love to be able to identify an extra couple hundred calories a day that would be easy to cut out, say giving up soda pop, except that I don’t have habits like that, other than chocolate. It should go without saying that isn’t an option to cut out. What’s left is all that tedious stuff about portion control and more exercise and balancing intake and outtake. Ok, so deep breath and turning next to that task. Even if not with very good cheer.

Thus, overall, while there are clear physical effects leftover from my menigioma adventure, it seems to me that most of the aftermath, 16 months after surgery, is how I manage my own reactions and attitudes. I continue to feel broken, cognitively, and less than I used to be in the way I think and work. While that feeling doesn’t really go away, I’m learning better ways to work around the parts that are most frustrating and becoming more accepting of the rest of it.

I wouldn’t have picked these challenges, but since there isn’t a choice about whether to be this way, what remains is choosing my attitude. That’s an ongoing work in progress. I still feel lucky and count my blessings pretty much every day. After that, though, I’m still that same old cranky, impatient, bossy self. Some things never change.

Belated Six Month Scan Image

Michael spent time this morning implementing the scheme he'd dreamed up finally to retrieve and make viewable the brain scan taken six months after surgery. Not ever having seen the scans was continuing to bother me at a low-but-persistent level, so he devoted some time hauling out an old machine, locating the images, translating them and moving them to a place where our current computers could read them. He'd managed to look at them when they were fresher once while I wasn't home, and then the machine he'd done it on had gone berserk (not from my brain images, we hope) and they've been inaccessible to us ever since. He's been noodling (his term) about the problem on and off, and recently came up with a new approach that was successful today. Thank you, Michael! (Again.)

En masse, the images are interesting and raise some questions we plan to pursue. Mostly, though, they're reassuring and illustrate the surgeon's comments about how well my brain was refilling the tumor void. For me, it's nice to see my brain without that mass there... we're not sure what the bright spots mean. Swelling? Scar tissue? Dunno. We're seeing Dr. Thoughtful this week about the ongoing brain chemistry-balancing experiments, and though he's not a neuro guy specifically, we'll see what he has to say about the images.

Meanwhile, somewhat belatedly, here is the most parallel scan to the one posted at right.

Thirteen Month Cranioversary

My surprise craniotomy was a year and a month ago today. I have no special reflections or thoughts on that; our lives are once again filled primarily with the dailyness of existence, which is a fine thing indeed. At that level of granularity, life is good, and the pleasures outweigh the frustrations.

My scalp still has areas of strange sensations, balancing activities with available energy/coping with fatigue are still issues, and my right arm/shoulder are still not right. Some cognitive effects are still visible in terms of little gaps here and there, memory problems, and the strange sequencing of what I can do when: right now, sudoku is off and reading is on. I continue to feel lucky, and work to focus on the things that are most important: my children still have a mother, I can still work and maintain a broad range of projects, I have work that is flexible enough to accommodate my limitations and play to my strengths, there are pretty good ways to compensate for my shortcomings.

I saw a little girl on an airplane the other day who, while she didn’t resemble in the slightest either of our girls as a child, brought back memories of that lovely time of our lives as parents. She was interested in all around her, at that stage where she is sounding out letters and working to decode words, and had that air of wonder that happy children do... At the time, seeing her stimulated a train of thought and connections that, in my fatigue today, are lost. I hope the connections are lost only temporarily, as they were interesting and seemed at the time to hold the key to something I’ve been wondering about. Time will tell if the insight will return. It may take a while, as today has more obligations on campus and so the needed rest may not come for a while yet.

After I spent most of the week reading, we watched this week’s NCIS episode on line last night, as well as trying out NCIS LA (yuck). My dreams are completely different at night after reading (or working) in the evening than they are after watching video before we go to bed. It makes sense and I’m feeling a little slow only to be noticing that now. Later in the weekend, when there’s some time, I hope to chat with Dr. Google about this, to see what effects are known and understood. I wonder how much that explains some of the unusual character of the last few months’ dreams? It cannot be a full explanation, as I reconstruct our activities, but I’m now interested in exploring this topic a bit.

Need to run: ethics events all morning. The view out my window is the very best of autumn in Illinois. The leaves are changing and the colors are beautiful in the morning sunshine. Enjoy October, wherever you are.

Cranioversary

A year ago today, I was having brain surgery. How weird is that sentence to live and write? A remarkable number of you caring, kind people have remembered and written to me about this milestone, underlining once again how much the continuing support we have is sustaining and nourishing. We owe thanks to so, so many people.

That sums up the big picture, a year later: we feel grateful, we count our blessings, we’re glad to be where we are. And, while Michael’s at ease with where we’ve been and what we’ve done, I still grapple with it. I struggle with the realization of how lucky I’ve been and how very much there is to be grateful for while still feeling fundamentally compromised. I’m glad to be here and recognize that there are ways to do almost all of what I want to do. That’s huge. And yes, I’m calmer, deeper, more thoughtful, more relaxed in ways that are an improvement by just about any measure. I can see all that and appreciate it.

At the same time, I’m diminished and I feel it. It’s possible to compensate for and hide the worst limitations, especially in short bursts, but they exist. The on-going brain chemistry experiments are trying and we still haven’t achieved a balance for the long-term.

A year later, most of the effects of surgery have faded away. From the top down, my hair (the first to recover) is completely back to normal. My scalp still has an area that retains that that strange hypersensitivity combined with numbness, but most of it is back to normal. My skull has new ridges and valleys, and because of my hair and the location of the tumor, they don’t show at all, though by touch they’re pretty remarkable. The recurrence of the worst symptoms of menopause (one of the ickiest side effects of this entire process) seems to have subsided, another reason to give thanks. I spend much more time at home because going out in the world still is unnaturally tiring compared to being "in." I plan and ration my expeditions and meetings around work, a balancing act still in progress. I lose my balance in certain situations, which seems directly related to visual overload, though we haven't been able to tie it down any more than that.

I’m still doing physical therapy for my shoulder, and it continues to show progress. A friend came for tea the other day, and I took a tea pot down from a high cupboard, lifting both arms over my head without any particular thought--right up until I needed to get my right arm all the way down again, which required a little calculation. In terms of distance traveled, a year ago, I couldn’t control my right arm. The path has been long and rewarding. The physical therapist plans an assessment next week and mentioned that she thought another couple of months might see us completing our work. She anticipates me regaining full use and control by the time we’re done.

The biggest remaining challenges are the cognitive deficits/gaps and to get my adrenal system going again. The artificial cortisol (prednisone) I’ve been taking now in small doses for months is not stimulating my own production as hoped. Taking the prednisone cleared up the sensation of swimming through mud all the time--a godsend--and also brings its own problems. The current regime of tapering down leaves me without energy by early evening and limits my ability to work. It’s not the worst thing in the universe not to be working so hard in this patch of my life, but it’s frustrating. Even if I seem the same to others--something I hear a lot--I’m not the same. Where I am is less than I used to be, less than I’d like to be.

That train of thought just brings me back full circle to the realization of how lucky I am. My moral puritan then kicks in and admonishes (well, berates) me for focusing on the deficits in the face of such enormous blessings. I know this is not a constructive or useful loop to be living. It is, though, where I am. I plan to journey other places, and soonish.

I never have really come to terms with being a person who got a brain tumor. Who gets a brain tumor, anyway? And what does it mean? Anything at all? Something? Nothing? Looking anew at the tumor image sets me off on my mental chase again. In part, this current mood seems directly correlated with the chemistry experiments in my brain and especially the tapering process, so I’m trying to wear it as gracefully and lightly as possible.

We continue to feel cradled in the hands of so many friends and surrounded by caring. That softens the edges of what’s been an odd ride on an adventure we never contemplated. Old friendships have deepened and new ones blossomed. You carry the day. This adventure isn’t over and we are sustained by knowing you’ll be there through whatever steps come next.

P.S. for those who asked, here's the first visible results of the first step of my response to circumstances here: http://www.news-gazette.com/news/local/2009/09/09/previous_ui_administrators_dispute_claims_of_clout

Eleven Months Later...

Life is good. Life is compromised in some ways, and glorious in others. Reading information recently sent my way by Google’s meningioma alert, I once again realized how fortunate I am not to have: died, been brain damaged, had seizures, had multiple craniotomies, lost use of one or more of my senses, gotten divorced, been significantly disabled by the tumor/surgery or any combination.

Instead, I had a fast experience: diagnosed on a Thursday, surgery the next Wednesday, home on Saturday. It was relatively problem-free. Yes, my right arm/shoulder still have “issues.” Yet they function well enough to do most of what I want and need to do, with some adaptations. Yes, my stamina is not great and, yes, my cognitive functions are compromised in some areas, most especially reading. At the same time, we celebrate neuroplasticity and are doing all we can to stimulate and grow new neural pathways. My skull is bumpy and scalp still weird-feeling. Balance is not always smooth, natural or steady. Some forms of insurance, like life and disability, aren’t available to me any more. Hormones rage.

That’s a really nice way of saying that I’m sitting here with a fan blowing directly on me and I’m still sweating in our air-conditioned house. Surgery seems to have stimulated a re-run of menopause, which until now was too unpleasant and aversive to mention here. Let me suggest that once is more than enough for any person (or couple) and this only reinforces my conviction, formed at earlier stages of life, that God is not a woman. Not possible. This design is stupid and poorly executed, too. If you buy me a drink, I’ll expand at some length on these thoughts. If you buy me two drinks, I'll keep my philosophising to myself.

Way counterbalancing all of that, not necessarily in priority order, throughout my experience, I had hair, family and friends, health insurance, flexibility in my job, sick leave, loving and caring friends, ditto family, and few complications.

Still, it’s a struggle to integrate the whole experience. Who gets a brain tumor, anyway? Especially one the size of a baseball that had to have been growing for years if not decades? What does it all mean? Beats me.

Here’s what I do know: it’s the people who matter in this life, and we know some of the best. A sense of humor goes a long way. You cannot find the high spots unless you are looking for them. It’s better than the available alternatives.

So, exactly eleven months since surgery, we are toasting, and giving a standing ovation to, all of you out there who have ridden this conveyer belt with us, reading, supporting, coaching, advising, crying, laughing. Our love to all of you.

Ten Month Status Report

The craniotomy was ten months ago today.

Who’d ever imagine writing a sentence like that? None of us, certainly, least of all me. The one recurring thought through all of this adventure has been “who gets a brain tumor, anyway?” By this curve in the road, the question about what stimulates the growth of these things has become interesting, which means there’s time and energy to ponder more than just putting one foot in front of the other. In and of itself, that's huge progress.

Ten months out, it feels like the recovery is maybe 90-95% complete. Will the rest ever come? We still hope. Externally, the incision is completely healed, and even the bits that were lagging have now completely vanished, and haven’t left much more than a minor trail behind. The one troublesome spot where we think some of the skin got turned a bit so the hair was ingrown (or some such equivalent) seems to have sorted all its issues out, and is barely perceptible by touch. My skull is uneven and bumpy, and all the swelling seems to have receded. It’s possible to detect the piece of the skull that was removed and reinserted around most of its perimeter. My scalp still has places with odd sensations. The very first day, in describing what was to come, the surgeon warned us that the scalp stuff would be “the last to heal.” These places are smaller than they were before, though, and the combination of hyper-sensitivity and numbness has notched down several more levels. They’re now maybe the size of half my palm--a big reduction from even two months ago.

As has been mentioned here fairly often, I still have stamina, balance, cognitive and confidence “issues.” I need nine solid hours of sleep at night and often nap on weekends to catch up a bit more. Going up stairs works just fine, but going down is still a most uncertain affair for me in almost all circumstances. I can do familiar stairs with just a handrail, but the slightest unevenness or unfamiliarity calls for a handrail and, in preference, a person walking just before me on whose shoulder I can rest my other hand. This has been especially evident in our touring of medieval buildings.

I can do almost all that I want intellectually, though not quite. I search for words more than advancing age seems to explain, and have odd gaps in the ability to make connections. Following a written narrative is still beyond me most of the time. This is like a flickering light: it comes and goes. When it is at full strength, I can read, comprehend and retain just about anything. These times are fleeting and unpredictable. They tend to last for a day or two, and then wane again. At the worst of times, I cannot decode the comics or follow a written story. At those times, it’s occasionally still possible to follow an audiobook, though mostly not. In between, it varies. Overall, this is improving, though so slowly progress is imperceptible on a daily basis. Measured by the month, the improvement is slow and steady. Here’s the great news: This provides me with another venue for practicing my graceful patience.

I continue to be on artificial cortisol and we will not know until late in August whether my system has been sufficiently jump-started to produce it on its own, or whether this is more likely a longer-term condition. The prednisone makes all the difference in the world, and I’ve adjusted pretty well to waking up to take it at 5 and then go back to sleep for a while. As recently as a few weeks ago, going without a dosage (I forgot it when I packed for my final trip before coming here) threw me out of whack for days. I’m not too anxious to repeat that experiment. On the consistent low dose, my energy levels are reasonably high and consistent.

The contrast between this summer and last is stark: my mood, outlook and general state of being is strong and happy. Last summer was grim, though none of us knew why. So that’s an enormous gain and we’re counting our blessings.

At the same time, I’m overall much more tentative than I’ve ever been or felt in my whole life. It’s an odd sensation and I’m hoping to glean insights from it and meld the useful bits into what could again one day be a complete and whole “me.” On the other hand, the realist says that might never occur: this might be as good as it gets. If so, that’s OK. Everything about where things now can be worked with, around, etc. Compensating for the remaining shortcomings at this plateau is completely possible, though not always comfortable. We’ll find out in time--sometime in the next year--if this is as good as it gets, or if there’s another set of gains still to be had. To be here, given the original possibilities of serious brain damage (or worse), is a gift, and we’re treasuring it.

The physical therapy for my shoulder continues, and it, too progresses slowly. I let up on the daily exercises during our journey here and our weekend adventure, which was a mistake, though an understandable one, and one I’ll likely make again. I’ve lost some ground in flexibility and comfort, and have now gone back to the exercises, doing some of them twice a day, as prescribed. I have a good range of motion forward, with limits to the side, up, and, especially, behind. My frozen shoulder still takes odd detours in certain planes, as some combination of the muscles, nerves and shoulder blade opt out of their share. Again, though, there is discernible progress over the eight-month report, and probably over a month ago, too.

Thus, overall, we count our blessings. It wouldn’t have been too long ago that my diagnosis would have had a much grimmer outcome than the almost-full restoration to “regular” life I now enjoy. I can work and travel and am blessed with am amazingly wonderful array of family and friends who have provided love, friendship and sustenance throughout this strange adventure.

Thank you, one and all.

Birthing Backwards: Nine-Month Status Report

Our medical adventure has been a great experience, once you get past the weirdness of having a brain tumor. Our family is all closer than we were before and we revel in the friendships and community that have supported us throughout. The pace of life is slower and we’re enjoying that. Our renewed connections with many friends is a wonderful thing. Going down the list from there, the great neurosurgeon six blocks from our house tops the list of good parts of the experience; if you’re reading this now, you know it’s a long and wide-ranging list, as all of its elements have been described here over time. Writing this blog and hearing from you, a gloriously eclectic community of readers, has been an unexpectedly powerfully contributor to this era.

Taking stock nine months to the day after reporting for surgery, things are good. There are lots of low-level residual effects, most of them physical. The scalp sensitivity persists, though in a greatly diminished form, and the incision line still has one sensitive spot where we think there are ingrowing hairs. The dents and ravines in my skull are odd, but completely covered by my serendipitously-perfect hair for brain surgery. My balance is still a little strange at times, but that is improving with work. The limitations in movement in my arm and shoulder are the most serious of the persistent physical symptoms, and even those are pretty mild as these things go, with hope for continued progress. We’re still not sure--and probably never will be--what combination of brain and shoulder injury caused this. The tumor was pressing on the part of my brain that controls the right shoulder, we were told, and then I was on the operating table on that side for five hours, and then again lying on that side heavily sedated in the ICU. Whatever the cause, we’re hopeful with the renewed physical therapy that I’ll regain more ground. With the diagnosis of the cortisol deficiency, my energy is rebounding and I feel better than at any point in the last two years. There’s still some ground to be regained in both energy and general acuity (we hope), but we’re also assured that will keep improving for at least another nine months or so. All in all, lucky beyond description given the size of the meningioma and its location in the communication center of my brain.

Early on, as we were assimilating the diagnosis and belatedly recognizing tumor symptoms we’d explained away over the years, I’d hoped that one long-term outcome would be a greater confidence in my sense of body and self. Instead of dismissing aches and pains, I’d come to trust myself and pay attention to them, having just lived through the consequences of ignoring ever-increasing signals of a serious problem. That was a forlorn hope. I continue to react to each change with a belief laid down in childhood that I’m a hypochondriac, so whatever problems occur are imaginary or, at the least, exaggerated. Sadly, among the incredible benefits we have and are reaping from our adventure, that’s not going to be one of them.

In other nine-month medical adventures in my life, I managed to produce really outstanding products. This experience has been the reverse of those. I worked on this tumor longer and have spent much more time recovering, so it would have been nice if this longer gestation period had produced something even remotely as great and wonderful as the birthing process. We’ve tried, but we haven’t found nice things to say about the tumor itself. Maybe we never really got a chance to bond since we didn’t get to see it? Whatever, we’re glad it’s gone.

We still plan, one of these days, to post the new brain scans showing the reoccupied tumor void: the disk got lost in the pile on Michael’s desk by his computer, so that’s been delayed. He is positive he’s going to unearth it “really soon” as he embarks upon yet another archeological expedition in that region. To whet your appetite, I can tell you it’s a nice contrast to the first set of images that contain the tumor. I still work on assimilating what it means to have had a brain tumor and still don’t have any great insights to share on that topic.

Has this process yielded any wisdom? Hard to say. It’s reinforced things we already knew, like the importance of family and friends, the influence of good (and bad) communication, the value of living in a university town, how much we care about education and skill in professionals and the powerful effects of reaching out to other beings, both for those who reach out and those who are touched. Throughout, we’ve been on the receiving end of so many unbelievable kindnesses and so much love. We have much to repay as well as to pay forward.

Addendum: Because You Asked

The visit with Dr. Thoughtful was almost entirely good news with some uncertainty mixed in. His office had a power failure the last time we were there, so the orders for more tests didn’t get logged in before we left, nor did we get it on a calendar, so he didn’t have all the results he would have liked before the visit. I’ll get the lab work done tomorrow. He agrees that the improvements observed since we started the prednisone seem to be positive and the uncertainty comes because we don’t have the test results, so making a plan for what comes next is premature.

One thing he said is requiring us to reset our expectations in a way that’s taking longer than seems predictable: we’d been working towards an acceptance of the residual right-side weaknesses I have, on the theory that this is about as good as it’s going to get. (And thankful for the improvement we are, too.) His reaction was surprising and positive: he sees no reason to accept where things stand as the ultimate achievement and is prescribing more physical therapy for the shoulder/neck. Of course, this means going back and wrangling with the insurance company some more, which believes I’ve had enough PT and certainly have enough functionality to call it quits. We’re game for this, and so is his office, so that effort is underway.

We won’t know a lot more until after the test results and another consultation with him. In particular, we won’t know if things are restarting on their own or if we’ll need a hiatus (along with the possible return of the swimming through mud cognitive functioning). That prospect is a little unsettling. On the other hand, the upside is large enough that we’re reassessing and working on acclimating to the idea. That’s the report.

Light Shining; The End of the Tunnel? Eight Month Status Report

My brother Glen worked for decades with a top-notch endocrinologist with whom he put us in contact, and who who has been advising us as a favor to Glen. In a telephone conversation this week, we learned more about the interactions of brain surgery, cortisol, prednisone and the adrenal system. In response to his questions, it became clear that both my energy and clarity have turned a corner since starting the low-dose prednisone every morning almost two weeks ago. In short, people with low cortisol levels usually feel sluggish and have low energy; that would sum up where I’ve been for months--and also explain why things have been so much better recently, despite the stress of too much travel and the usual, nutso end-of-semester workload. Prednisone is a synthetic steroid being used to supplement my self-produced cortisol, and the low dose I’ve been taking helps my system think it’s getting what it needs.

Cortisol is produced in the adrenal glands when signaled by the hypothalamus and pituitary. My levels were lower at their highest point than the minimum expected normally. A recent ACTH stimulation test has shown that my adrenals produce more cortisol when stimulated, so we know this is not a primary adrenal failure (very good news), but instead a secondary or tertiary one. The plan is to stop the prednisone after a month and see if my body’s pituitary to adrenal signaling has bounced back enough to keep me supplied. Thank goodness for the doctor willing to take the time to explore a variety of options and formulate the hypothesis leading to this chemistry experiment with my brain. Unfortunately, cortisol has nothing to do with the memory holes I’ve been experiencing; the endocrinologist told us that if cortisol helped short-term memory, he’d be taking it himself. (Who wouldn't be?)

One of the great things about this fine and generous gentleman is that in addition to his expertise in endocrinology, he’s also experienced with the interactions of brain surgery with these systems. While I might have heard all this information before from the neurosurgeon (or maybe not), this was the first time it really sank in. In short, the cognitive deficits I’ve been experiencing are standard effects of brain surgery, both from prolonged exposure to air and the general trauma to the brain. While it’s not common, it’s also not unheard of for a surgical site even as far away as mine from the pituitary gland to affect its functioning, in addition to the general addling effects I’ve demonstrated with such determination. He also explained more clearly--or perhaps we’re just at a place in the process where it was more meaningful to us and thus we absorbed it better--that a year is a fairly standard period of time for these cognitive symptoms to improve. Apparently, around the year mark, even people who haven’t shown much, if any, recovery in cognitive function sometimes make a marked gain. As I’ve clearly been improving all along, though much too slowly for my taste (I can hear you thinking thoughts about my impatience), the prospect of continuing improvement in the near future is heartening. The surgeon had told us “a year to eighteen months,” but I don’t think we ever fully understood how or what that meant.

Tomorrow marks eight months since my surgery, and really, in the big picture, things are going very well. This recent improvement to us marks another corner turned, so much so that we’ve decided that we’ve moved on a phase, and are today inaugurating Part Eight of the adventure. We’re calling it “Light at the End of the Tunnel?”

In the big picture, my children have a mother, and I’m mostly who I was, most of the time. Regaining energy on the scale of the last week or so is a vast improvement--hard to overstate--and one for which I am incredibly thankful. My recurring balance problems, cognitive deficits, scalp sensitivity and limitations in my shoulder/arm mobility are all small potatoes seen in this light. There are effective compensatory mechanisms for all that need them. (I just don’t brush that part of my hair with much vigor, for example. Big deal. Or try to put my arm behind my back.)

Over the past few weeks, even the problems with field-of-vision complexities have abated. I still have odd responses to turning my head, especially to the left, while moving, and have even stranger, usually unpredictable, responses to movement in my peripheral field while I’m also in motion. That combination is the most likely to lead to severe balance problems, up to and including falling down. On the other hand, now that I’ve become more aware of the triggers, I can both limit the circumstances in which they occur and manage them better when they do. I’m quite a spectacle in some of the balance exercises we do in our weight training, though. It’s a good thing the people at the gym are both kind and understanding. The trainer we’re working with is particularly observant and thoughtful in designing exercises that keep pushing the boundaries of my abilities, so there’s one more blessing for which to be thankful.

Have I achieved my goal of meeting this adventure with patience and grace? Yes and no. The marks for grace are much higher than the ones for patience, and neither of them are really in the top rank. However, overall, I’m grading them as acceptable and focusing on the part where more growth seems possible.

This adventure has been a remarkable one, the more so for all the friendship, love and support we’ve received from so many of you. Our tighter connections to the people we love have been a special bonus. We send you our profound gratitude,caring and love.

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.

What’s Normal? Six –Month Status Report

In its stretchy way, the six months since surgery have passed both quickly and slowly. Our predominant reaction to this adventure continues to be gratitude: we are fortunate beyond words in both medical details and in our human connections. In the big picture, things are going well and we count our blessings. In the smaller, day-to-day picture, there are frustrations and challenges. The main question they leave me with is “what is normal?”

What do I mean by that? There’s a Dick Francis mystery in which the protagonist is kidnapped. He awakens miserable and confused: cold, sore, tied up and in absolute darkness not knowing where he is or why he’s in that situation. He slowly comes to realize that he’s a prisoner on a boat. He’s seasick and overwhelmed by unrelenting din from the engine on the other side of the wall from his head. He yearns for the intrusive noise to stop. The engine finally does stop and when it does, it’s a relief for a moment or two--and then his other miseries surge to the forefront. In some ways, I feel like that guy: every major symptom that goes away is a wonderful relief, and then I start focusing on the next remaining one, sometimes losing perspective on how very long the distance is that things have already come. Compared to six months ago, life is very, very good. Even in the midst of frustrations, an awareness of how good it is remains. Still, it all leaves me with the question of whether I need to adapt to where things are now or whether there’s still more improvement to come. Having come so very far, with the overwhelming aspects receding, is the job at hand simply to adapt to the remaining symptoms? When does that become the reality and how much longer will it keep improving? As my lovable computer geek crowd would put it, which of the elements in my current life are features, not bugs?

When I moved from administrative endeavors to my current ones, one of the biggest challenges was learning how to be productive in a life not booked hour-to-hour with other-driven tasks. That came along, but “work” still meant going to campus on a schedule that resembled what had come before, except there was no longer any good reason to go in on nights or weekends—staying at home was just as effective because there weren’t people with whom to interact at the office. It took some time, but new rhythms grew over time and they were good. Occasional opportunities that would have involved returning to office life and schedules haven’t been appealing at all: unstructured time and work-sites are terrific, especially given the changed point and product of “work.” (We're not even stopping to talk about how great it is to teach, think and write for a living.) This medical adventure has up-ended all the patterns that had emerged: now my default is working at home, and going to campus is for specific tasks. That’s been an adjustment in and of itself, since my concept of “work” involves going there and being there, and has been for so very long, and because working is so central to my identity.

On the other hand, this new configuration has great features: I really like our house and the working environment in every respect. It’s visually pleasing from the color of the walls to the woodwork to the paintings and furniture. The dogs have more company and seem happier. Most of all, Michael and I really like being able to spend so much time in each other’s company.

Then there are the elements about which the pressing question is, are they permanent or will they recede? I’ve been a voracious reader since childhood and for the last six months, reading and following a sustained written narrative are abilities that come and go. Mostly go. I have read just five or six books in the period, barely a week’s quota from before. We estimate that I’ve watched more video in the last six months than in the last 25 years combined—and that’s from watching a movie on Friday and Saturday nights and an occasional episode of some TV show on DVD during the week if Shea has all her homework done. This changes who I am in a fundamental way and it is a loss. It’s probably not permanent, but it might be. Is this the new normal, or is it just a way-station along the path to full recovery? There’s no way to tell.

Here’s the wrap-up of progress at the six-month point:
--the incision is almost completely healed, even the problem spots are vastly diminished in scale and presence
--the weird areas on the scalp are much smaller and the sensitivity has lessened dramatically; the surgeon said these are the last symptoms to fade. They’ll be around a while, is our current assessment. Lying down is a problem without my buckwheat pillows.
--life is virtually medication-free
--my right arm and shoulder are fine in all the forward planes, with the limitations being primarily behind me and in flexibility
--my brain seems to do most of what it used to: my personality is intact and most of my faculties. It’s not clear I can write yet, but I can edit and we’re hopeful about the writing.
--our values have been reinforced and our human connections strengthened from family to friends
--stamina and energy are unpredictable and limited
--sensory overload regularly occurs in unfamiliar places, in crowds and with certain kinds of stimulation, primarily visual

It’s all pretty positive, the more so if it’s measured as status six months after hours of brain surgery. The tumor was benign, it wasn’t entangled with my brain and the prognosis all looks positive. We see the neurosurgeon today for a follow-up. Whenever the next scan is, we’ll have a reading for how much the brain is reoccupying the tumor void and whether there’s any indication so far of recurrence. Pending that information, life is good. Thanks for being such a big part of making it that way.

Five-Month Status Report

February 10 (yesterday) marked five months since brain surgery, and today (Wednesday) is 22 weeks. Whichever anniversary makes the most sense to you, the bottom line is that there is much to celebrate: brain surgery five months ago, almost-completely regular life today. Things are well along in the recovery, especially when looking at it from the perspective of distance. Overall, things are great.

As to specifics:
Incision. The incision itself remains the main external, visible manifestation of this adventure, and even it is almost completely healed. There are still two places on the bottom horizontal line that are raised and inflamed, but otherwise, for most of the length of the opening, it’s a task even to figure out where the scar is. (Remember that I turn out to have the perfect hair for brain surgery, which complicates the location task.) My skull has some ridges where the bone was taken out and replaced, though I haven’t acquired the large dents that some craniotomy patients get. On the other hand, some of them report getting the dents months after surgery, so perhaps the more precise report is that I don’t have dents so far.

Scalp. A portion of the scalp that was folded back is still “boggy” (surgeon’s words). As I experience it, it’s more that it’s both numb and hypersensitive at the same time. The size of the area affected hasn’t reduced much in the last month, though the sensitivity has declined.

Headaches. These are no longer a regular feature of my daily life. Sometimes, a headache will creep along when I’ve overdone things, but they’ve become nearly rare.

Arm/Shoulder. My right shoulder continues to be not quite right. In the forward and sideways planes, I have full control and it works as I’d like most of the time, except when fatigued, when it starts to balk. My arm has limited backwards movement and the shoulder has strange hitches. Occupational therapy continues. Right now, it’s approved through February, and it’s hard to predict how much progress we’ll make in that time. The progress is steady and there’s the prospect of further improvement. The last week has seen a consolidation of previous gains and our hopes are high.

Numbness in fingers and toes. All the initial symptoms of numbness in extremities are gone. My fingers and toes are completely with us all the time. Certain manipulations of my shoulder can cause tingling in both fingers and toes, the latter of which I always find bizarre.

Cognitive gaps. These persist, though at a lower level than earlier. It’s hard to figure out what are brain tumor/surgery effects and what are aging effects. I clearly have memory problems, both short and longer-term. These correlate with my energy level, so at least some of them are leftovers of surgery and the energy my brain is putting into re-occupying the tumor void and related healing. As I’ve described, my ability to read fluently comes and goes, as do other higher-level functions, like synthesizing, summarizing, analysis, etc. This is truly vexing. On the other hand, I don’t seem to have the “freezes” in coming to decisions that characterized some of the early weeks after surgery, so again, there’s improvement and reason to be hopeful for more.

Balance and vertigo. My balance has improved remarkably. I still get vertigo, even when I sleep, which is a very odd sensation. This, too, is unpredictable and vexing.

Energy levels. This is the most problematic area for me, primarily because it is so unpredictable, which makes it hard to adapt or to plan. I can usually summon up the energy to pull off whatever needs to be done, and then the question is how big the price will be in terms of recovery time. However, there are times when energy just ends. Yesterday, for example, I had a series of productive meetings and then went to work out. Afterward, I thought I’d just rest my eyes for a few minutes. Almost two hours later, I woke up, and the afternoon was gone. That’s frustrating. Sure, I could work in the evening to catch up, but I’d hoped actually to do something productive in terms of writing and that didn’t happen.

Other miscellaneous symptoms. These come and go, too. The hormone surges seem to be receding, thank goodness. The last time we talked to the surgeon about those, his response was essentially “oh, that’s really interesting. Maybe it’s from brain trauma or stress.” The other neurosurgeon we saw early on was fascinated by the effects and wished for the ability to do a battery of tests to measure it all. We just hang in there and wait for it to go away.

Support and friendship. All through this, the support coming our way has been sustaining. We feel loved and cared for. People have been amazingly generous and the good will in helping to bridge the gaps, pick up the dropped pieces, cover, adapt, laugh at the funny parts and hold our hands through the rest has been overwhelming. We are very, very grateful.

Summary. I’m a lucky person. Lucky that the tumor was benign, lucky that it was accessible, lucky that the precision “stealth” surgery was possible and that our area has a skilled neurosurgeon. I’m lucky to be alive. I’m lucky still to be able to function at a relatively high level most of the time. I’m also an impatient and frustrated person, still really struggling to gain patience and grace. If the patience would arrive right now, I’d be content.

Cheers.

Four Months from Surgery

One third of our last year was largely devoted to this medical adventure. Four months from surgery, the acute parts of the recovery are mostly completed and only minor (compared to where we’ve been) symptoms remain: a palm-sized area of the scalp still has strange sensations, the incision has three very small inflamed/scabby stretches, the shoulder and arm aren’t working properly all the time. In this phase of the recovery, it’s the chronic state that takes adjustment: stamina that is still not either predictable or very good, intermittent problems reading and concentrating, low resilience in the face of exertion or infections, and the like. All things considered, though, the recovery has been quite remarkable. We have many blessings to count. As always when stopping to look at the totality of the experience, the single most striking thing about it is how many truly wonderful people we know and how much support we’ve gotten as we ride the conveyor belt through this experience.

The main question in my mind, pondering it all, is still how we could have gotten the information we needed at various points. As in many new situations, we lost much of the information given to us—although I lost much more than Michael and Kearney did. There are chunks of time that due to medication, pain or trauma, I simply don’t remember. Any information provided to me in that time is lost, unless one of the team was there to receive it too. Even when we all received information, though, some of it was overload in the moment, or we didn’t have sufficient context to understand how important it would become. For example we’re all still working on absorbing what a one- to two-year full recovery window looks like and how the process is paced through that span.

When the surgeon said that the scalp would be the last thing to heal, we had no clue what that information meant or how large that would come to loom in our lives. After all, wasn’t the tumor the thing? Or the risks of surgery? Or… the list is long of more immediate items that consumed our attention and pushed consideration of the meaning of the scalp information off the table.

Earlier, we ruminated about whether a series of brochures (or the on-line equivalent), by stages in the process, might not be a helpful way to dole out information. Maybe each experience is idiosyncratic enough that’s not feasible. On the other hand, that’s a project still on our to-do list to think about and consider.

This has been a remarkable experience. The support and caring we have received from all of you throughout has made it possible for us to get to this point with our dignity and optimism intact and with a sense of purpose. When we were low, you were there to buck us up. When we were happy, you celebrated with us. When we had existential questions, you debated them with us. When we couldn’t quite manage, you filled the breach. We feel connected and supported and have a strong sense of community and belonging. Thank you, all.

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.