Tuesday, September 30, 2008

Oblivious, or Denial?

Here we are, what, almost three weeks after surgery? And I’m just now figuring out that the most sore part of my head and scalp is not the incision, but a part that experienced no cutting at all. I’m not sure why this has dawned on me so slowly, but it is the back of my head and I cannot see it. I do not much related to it in the photos, either, for some reason.

In any event, the most uncomfortable part of my head is on the left side, behind my ear. The incision, if you saw the pictures (or if you preferred not to look, I’ll just describe it for you) is in the shape of a reverse “C”. Think of a square: the two horizontal legs and the vertical on the right-hand side that connect them are the incision. The resulting seam is mostly painless and healing remarkably; Michael says he can hardly detect the vertical line, even when he knows where it is and the two horizontal lines are only slightly more detectable.

On the left side, though, where there were no cuts of any sort to the scalp, my head is “boggy” and very sore. The sensation of near-painful tingling is a lot like my right thumb, which aches all the time with an unpleasant sensation. It’s not quite numb (that would be better) but almost. That area of my scalp is by far the most tender and sore. I wonder if this is because the skin was folded back there during the surgery and this is some after-effect from that? Or perhaps some cutting on the bone underneath which is not evident with the scalp covering it again. Another question for Dr. Google about how this surgery is done, I guess.

The very best thing for sleeping turns out to be my buckwheat pillows. I gave a talk a few years back at a research integrity conference in New York City, where I was placed at a funky boutique hotel that advertised itself as focusing on holistic health. They had bowls of apples everywhere, and every staff member, at the beginning and end of every interaction lowered their voice an octave or so and intoned in a quasi-musical way “Be well.” Among other features, each room had a Pillow Menu one was encouraged to discuss with the Pillow Concierge. Being adventuresome, in the two nights I was there, I tried every pillow on the menu, after very serious discussions about each with the Pillow Concierge--who could hold these conversations without giggling, which I thought was an impressive testimony to something or other. Pretension? Seriousness of mind I don’t personally possess? The Pillow Menu had, as I recall, about eight choices: there were down pillows of different lofts (very solemn discussions of the pros and cons of each variety of down), Swedish memory foam, hypo-allergenic, and … I don’t remember… and buckwheat. Of all the pillows, I was captivated by the buckwheat option. These pillows are not really soft, but can be manipulated into just about any shape or position because of the buckwheat grains and that arrangement holds once set. I bought some as soon as I got home and have been using them ever since.

The buckwheat pillows have been a real boon throughout this recovery, and I even used them while I was in the hospital. They can be arranged so that there was no pressure at all on the sore spots and lots of support everywhere else. I think they should be standard equipment for recovering from head surgery. Regular pillows hurt!

Yesterday brought physical therapy (short session, mild effort, 2 hour nap afterwards) and half of my law class. Wonder-friend lawyer teaching it is doing a magnificent job; me, not so much. I did manage to write on the board, using the tooth-brushing technique (two hands: left arm supports the right elbow and arm). It wasn’t pretty or fast, but it did sort of work. Mostly, she wrote on the board. My timing is terrible and I didn’t leave anyone enough room to work things through. Also not pretty. I can only hope I’ll get better soon. The students in this class continue to be tremendously good-natured and generous about the whole disrupted experience. Today brings occupational therapy and strength training and, I hope, an hour of my other class, which I haven’t seen since the Tuesday before surgery. They, too, have a tremendous replacement who has parachuted in with enthusiasm and energy and to whom I’m deeply indebted. Plus, it’s another group with a great group personality.

Meanwhile, the comic strips are becoming more coherent to me in recent days, which although a fairly minor affair, is a step forward any way you look at it. What isn’t returning, I note with consternation in looking back over blog entries, is my inner copy editor. I’m disappointed with the number of errors throughout these posts, not to mention the incidence of truly hideous sentences. I’ve learned that I often write my way to my point, so it’s important, after finishing a draft, to go back and turn many of my sentences inside out, moving the point from end to the front. However, reviewing what’s here, I see far more sentences that meander along than leaves me comfortable—and only some of them conclude with any sort of point. And there are so many words to convey some pretty simple ideas. Whew.

To a certain extent, the truly obnoxious sentences correlate with days when I didn’t feel very good. Ok, I can live with that. I’m working on excusing myself for both those sentences and the other flaws that make me cringe, and remembering that you nice people have likely been cutting me a break as you went along. Probably, even, I notice the problems more than you have. With certainty, I am more critical of them. Yet another opportunity presents itself for me to work on my grace and patience. Great news. (A family tag line and used sarcastically; it’s a long story. But “great news” is generally not great news, used in this fashion.) I’ll see what I can do. Meanwhile, I’m going to be watching carefully for my inner copy editor to figure out if she’s still around and can be roused.

The New York Times today has a column about finding medical information on the internet and some of the communities related to particular diagnoses. When I was up in the night, I checked out some of the meningioma communities… reminding me once again just how profoundly lucky I have been throughout this process. I’m going back to rest up and to do my best to manage my stamina/strength today. Enjoy your levels of energy—I always took mine for granted before and I’m seeing now that was, as they say, an oversight. Have a great Tuesday.

Monday, September 29, 2008

Thoughts on Being a Patient

As we kept logs on the medical staff we encountered in our adventure, we also thought about what we brought to each interaction.

It can be overwhelming to be caught up in a large medical system, especially when you’re either frightened or don’t feel good, or both. These systems operate on their own rhythms and for their own purposes. Maintaining some sense of ourselves and some feeling of control (illusory or not) was what led us to our counting exercise, for example.

At the same time, we tried to see how this looked from the other end of the telescope. All the people we were seeing were working, and their work has them dealing with large numbers of people, not just us. Even more, they don’t just deal with a constant flow of people in their jobs, they deal with many people in extremis, not all of whom are, or are capable of, being very nice about it. We clearly had selfish motives in thinking about our conduct, beyond our own family standards for behavior and good manners. We wanted the best from the professionals we encountered, we wanted their attention and we wanted to be treated with respect and as individuals.

One of the basic rules of the kind of professional “soft skills” (negotiation, communication, leadership, ethics) I teach is to work on cultivating curiosity. The best way to become a better negotiator, for example, is to ask more questions—and to listen genuinely to the answers, processing them through your brain, not just waiting through the other person’s noise until you get to talk again.

Our logging, in addition to giving us some sense of control, then, was also a way for us to help ourselves focus on what the other person in each interaction was doing, and how. It provided a structured reminder to be curious about each person with whom we interacted—even when we didn’t feel like it, which we didn’t, always. The discipline helped us bring curiosity to each interaction: it made us more observant and other-focused, and helped us see each person as an individual, not as a cog in the system acting upon us. (This was helpful, because it did feel that way sometimes and it would not have been hard to get into a wrangle with one or two of the folks we’d encountered, if we hadn’t been exercising some self-control and awareness of what was going on.)

Our efforts probably made us more interesting, and we hope, more pleasant. Both common sense and social psychology will tell you that likeability matters (it is much easier and more appealing to do something for someone who is being pleasant to you than someone who is berating, insulting or rude) in all kinds of interactions. When we could bring a sense of interest in the professional approach of the staff working with us, and find something either to ask about or comment upon, we were helping to shape how the encounter went. Given the sheer numbers of people passing through the work lives of these professionals, this seems like not only a good, self-protective idea, but maybe also our obligation as part of a two-way human interaction.

Some of this is just common courtesy, but I think it goes beyond that. We were often able to change the direction of an interaction in a more positive way by paying attention to what the other person was doing, noticing something about it and asking questions. This often helped to slow the pace and make the interaction more purposeful, thoughtful and engaged. I’m guessing this made the interactions better on both sides. Being purposeful about what we were doing helped us more than just giving us the sense of control. Maybe it was even an obligation—one we had not really contemplated—on us as participants in the process. I don’t want to get carried away putting obligations on sick people. Still. I know people whose research deals with patient advocacy training and related issues, and I think I’ll be paying attention to that in a whole new way as I recover from this experience. If finding a way to feel some control at a helpless time can improve the process for all, maybe this is something I need to think about more seriously than I have in the past.

We learned some interesting things along the way. In the aggregate, we found a workforce that was committed to their work and seemed reasonably content in it. We found a system that was working on growing its own, with staff being supported in going to school to get to a higher level of certification. We heard spontaneous stories about how, when the regular systems (for example, 12-hour shifts for nurses) didn’t work with family life, other schedules were provided. We encountered staff engaged in serious problem-solving and clearly felt it was within their mandate to do so and to advocate for patients.

Bear in mind that we had some significant advantages in being able to take this approach, especially at the beginning (well, ok, not in the emergency room that first day) when we were fully functioning and not experiencing immediate symptoms other than needing to schedule brain surgery.

Yesterday’s post stimulated a wave of thoughtful, wise and interesting comments. I’m still thinking about some of the points raised and will be responding personally and here after a little more processing. For example, Doug wrote yesterday “I believe that feeling in control is a healthy state to be in, and aids in quick recovery… Taking control of that which you can control is healthy and aids healing. The sweet spot is the limit of what you can, actually, control. Taking control of that which you can control is healthy and aids healing. Trying to control that which you can't hurts health. (I believe there should be something about "and it annoys the pig," shouldn't there?)” … If you can control it, go for it. If you can’t, then go sit in the sun.” Seems right to us.

Otherwise, yesterday was another down-ish day. None of us felt very good all day and I’m still working on internalizing a tortoise-approach and level of energy when it’s very “not me.” We started getting not-bills from our health insurance this weekend, with lots of numbers. We are most interested in how the bills will look. In the early 1980s, we couldn’t make heads nor tails of Dorothy’s hospital bills (heart problems) and ended up hiring a medical bill auditor to help. Similarly, some of Ernie’s hospital bills (55 days worth) might as well have been written in Urdu, for all that we could make out of them. The numbers were staggering, though since he’d been a federal employee, the share we paid out of his estate—of the DISCOUNTED figures, because he had health insurance, go figure—was miniscule. It appears to us that I’m very close to my maximum co-pay simply from the emergency room visit and the radiology. We haven’t even seen the neurosurgery, intensive care, or other hospital stay bills. Stay tuned.

We all continue to be most grateful for the connections and the time you take to stay in contact. I’m off to physical therapy this morning.

Sunday, September 28, 2008

The Rules Weren’t Working For Me

Yesterday, we seem to have hit the proper balance of activity and rest for a successful tortoise. Realizing just how low this level of activity may be for a while was disheartening. It brought with it an hour or two of wallowing, starting with my dislike for the large, bumpy leftover stuff on my head. My head! The whole idea of a brain tumor and someone having sawed open my skull is still hard to reconcile. Piling on the impositions this situation is putting on so many other people, the thumb-hand-arm-balance-strength-leg stuff, the inability to find words and short-term memory holes… I was cranky. I suggested to Michael that what he really needs to do is find a good Mean School to become less nice, as his current level of nice cannot possibly be good for him. He laughed so hard it jollied me (mostly) out of my funk and we moved along from the moment. However, having been there was a window into just how long this slog is going to be. Of course, it also illuminates how lucky we are, as these hills are not all that high in the bigger picture. So, the focus is back to working on being an effective tortoise.

The sum of my activity yesterday: finishing grading another week’s papers and walking around in the sun at the Salt Fort Art Festival for half an hour. It was pleasant and we ran into one of the really terrific ICU nurses and her family there. She was as surprised and happy as everyone at my rapid and smooth recovery (cranky later notwithstanding). This level of activity required two long naps, and reflects the sum total of my day’s exertion other than paging through the day’s newspapers. I’m back to working on seeing how far I’ve come in such a short time.

I have the impression these posts are too long, especially as we move out from the dramatic events, so I’ll finish today with the information I left off (and for which I was chastised) about the full implementation of “another later.” The full use not only involves the concept and wording, but a hand gesture, full palm out, like a “stop” sign. It’s of course possible to employ this most useful concept in graduated doses, from just thinking it (and putting off the vexing task) to articulating it to the most emphatic usage complete with the hand gesture. (hand out in front of you) “I’ll do that another later.”

I was also reminded of the full-scale escalation, brought to us by Anna Shea, in the event that “another later” turns out to be too mild for the circumstances. This entered our lives when she was about three or four years old. She wasn’t very big, but she was fully the person she has become. She and I were going around about something in her room and she said, hands on hips, “I won’t do it and you can’t make me.” Michael overheard this as he passing by in the hallway and: popping in, he asked “what did you just say to your mother?” Shea looked at him with a beatific smile on her little face and, very gently said “Oh, don’t worry. It’s OK. Her rules don’t work for me.” So if “another later” isn’t sufficient, you might consider whether the rules are working for you.

Yesterday, the rules weren’t working for me; waiting until another later to think about it in detail seems to have helped. Today, with the sun shining and the prospect of great sunshine for at least part of the day, I’m back to seeing the big picture and the long-term goal of total recovery through slow and sure progress. Even if it did take me until this morning to remember the name of the man with whom I worked for years (literally) we ran into at Jarlings on Friday night. And that could just be aging, right?

Thanks for the emails and other contacts. It’s nice to feel connected. We send you wishes for a restful and restorative Sunday.

Saturday, September 27, 2008

Our Hospital Notebook, in Response to Questions

The renewed course of steroids is working. The swelling on my neck and face went away almost immediately, and the headaches are controllable again. I feel like a different person. We’re turning our attention back to recovery from surgery and the whole experience: taking care of the incision and its soreness, working on the physical and cognitive after-effects of the surgery. The tortoise approach is the order of the day. My first goal is be to be able to resume teaching—probably half a class at a time, since they’re both three hours long—and then to add other things, slowly, after that. Although this whole experience continues to be disorienting, all of us are doing better with assimilating and adapting to the massive change from our lives a month ago. We are still counting our blessings, and appreciating just how lucky we have been.

Anyone who has worked with me, been on a committee I’ve staffed, or maybe just passed me on the highway knows that I use three-ring binders to organize information. I got some questions about what we put in our family hospital notebook, so here’s a summary of what we did.

For the actual hospital experience, we didn’t need an enormous binder. We started with a 1.5-inch one. Almost at random, we chose a set of 15 dividers. We didn’t use all of them during the hospital experience, though we came pretty close. Fifteeen was probably a better choice than twelve, our other choice. We continue to use the notebook even now, and as it's beginning to get full, may transfer up a size, but we didn’t need anything larger during the pre- and post-surgery hospital times. Because I’m compulsive and like pretty blue things, we used a binder that let us make our own cover and spine labels, and put a family picture on each with a nice blue background, as well as the title (Family Hospital Information; CKG Craniotomy; September 2008). It was nice to see the family picture all the time while in the hospital.

Notebook sections:
1 medical information and notes
all the notes taken in various appointments and the research we did as we were working our way though this process
2 sick leave log
a record of time spent on this adventure during the work week, starting with the CAT scan that revealed the tumor (periodically transferred to a spreadsheet as time/attention permit)
3 notes and information from others that might be helpful
information we got from people about contacts, helpful things to have on hand, things we didn’t want to forget
4 questions to ask
a running list of the questions that we wanted to ask various people; we just kept adding to it and then puled out the list when we were in interviews or appointments; we added to this all the time
5 coming appointments
we put appointments on our calendar but also hole punched and stored here every piece of paper confirming a coming appointment; we found ourselves in information overload often enough that the redundancy helped. We referred to this more often than we had expected. It was a good insurance policy
6 never used
7 random ideas and thoughts
as we moved from winding down regular life and switching full-time into medical-adventure- mode, this is where all the stray “to do” and “ooops, I forgot to…” items got noted, as well as the “here’s a task that needs to be done sometime” We didn’t get to any of these items until this week, but it’s been a nice list to have as we tentatively think about resuming some of our more normal life activities
8 craniotomy logs
counting log pages: blanks; hand-written filled out pages; the final versions we typed up periodically. We hole-punched the blank pages in advance so, as they filled, we could put them straight into this section of the notebook. We kept the current page we were working on taped to the back of the book, so it was always handy. A few of them ripped and caught on things, but as a system, it worked well enough for our purposes.
9 printed copies of nice email that came in that people brought me in the hospital
a warm-fuzzy and nice reminder that all of you were out there; not essential, but oh-so-nice
10 info on people

for Kearney, Shea and Michael; I printed and annotated screen shots of my email mailboxes so they would have a context for people whose names/institutions/connections to me they might not easily recall
11 notes and ideas for blogging
not used much; as we went through things, we knew what we wanted to say at pretty much every juncture
12 thank you logs
a place to keep track of the unbelievably nice things so many people did for us so we could make sure we got thank-yous out as we became able to do so
13 copy of my calendar
especially helpful in the beginning as we were winding down our real life and scheduling our medical stuff; for a short while, we used it as a redundant way to track sick leave; the calendar was most useful at the very beginning and eventually fell out of usage. At the beginning, though, very helpful.
14 medication information
All the information sheets we got on each medication
15 medical expenses
all the prescription receipts, co-pay receipts, etc.

We put an empty page protector at the very beginning of the book as a place to store items we were handed until we could get them hole-punched and filed. This wasn’t a big issue for whole sheets of paper, but we received a remarkable number of half-sheets, cards, and smaller items for which it was a terrific help. We used it every day.

For parts of the experience, we had a running TO DO list in the very front of the book that we looked at a lot and that we wanted right there when we opened it. That was especially important at the beginning of this adventure.

The hospital’s admission kit provided some printed tabs of their own: therapy instructions; medication information; physicians and providers; discharge information. We put them in the book, but didn’t use them. For us, the discharge instructions went most naturally in the medications section since that was our main use of them.

Finally, we hole-punched and stuck in the back of the book all the brochures we received on “having surgery at Carle” and “patient registration and admitting information” just so we’d have them near at hand. I don’t recall referring to them, but we had them to reference if we’d wanted to. We did all read through them.

Blogging is interesting. At an isolating time in my life, it’s kept us connected in ways we never imagined and been a lifeline in many ways. Writing every day has helped us organize a very strange experience. Your feedback and ideas have kept us thinking and meant so very much to us. We’re most grateful that you’re out there. Many have emailed about various posts, often mentioning that they have trouble leaving comments here. We’re new to this and will be looking into whether that’s because of something in the way we have set things up that we overlooked or didn’t understand as we started. Meanwhile, thank you for being out there. Have a great Saturday.

Friday, September 26, 2008

Friday's Musings

The last topic we raised in our idiosyncratic, one-family’s adventure through the medical system review was our experience of waiting rooms in the clinic and hospital. This is the part where how disconnected we are from the mainstream becomes more obvious: we found the omnipresence of the loud TVs intrusive and grating at a stressful time. While we were seeking quiet and a way to comprehend what was happening to us, everywhere we went there was blaring noise. In retreat from the noise, we often ended up going around corners and sitting on the floor, of course first telling the staff where they could find us so we didn’t mess up their systems. In yet another mark of staff paying attention to what was going on around them, about half of the time, someone noticed us on the floor and offered to find us chairs—and usually people who had no relationship to the area we were visiting. In the pre-op insurance and medical clearance area, for example, it was a woman sitting across the hallway in the billing cubicles who offered to go round up chairs for us. Not her job, not her area, and she still noticed us and went out of her way for us.

Our steering clear of the TVs is clearly part of our own weirdness: we rarely watch broadcast TV and don’t have cable, so we aren’t either used to it or tuned into it. On the other hand, surely we cannot be the only people around who could use some peace and quiet when doing medical stuff? Or can we be?

We didn’t set out to be TV weirdos: it was happenstance. Let’s just say that the summer Kearney was born, the effects of pregnancy caused me to be more volatile than usual. When I got to be about five months pregnant, for example, I became absolutely convinced that Michael was going to be hit by a truck riding his bicycle to work. Honesty compels me to point out that it was about eight blocks to work for him and not on roads that trucks frequented, and that he wore a helmet and that the Walker ethic involves really careful driving/riding habits, but there you are. I was fixated and afraid. I’m almost too embarrassed (but not enough to stop) to tell you that nice man gave up riding his bicycle for the duration and walked to work to humor me. In any event, there I was with a new baby at home, watching the Olympics when she and I weren’t sleeping or sitting outside enjoying the summer—she stopped crying instantly whenever we were outside and was a little jaundiced when born, so multiple agendas were met, including my lifelong love of the sun. A cable bill arrived with a price increase to $25 per month. For TV. This seemed like way too much money for TV to me, and in fairness, to both of us, so we terminated our cable service and stopped watching, except for major events like elections and State of the Union addresses. As the girls grew up and went through school, we fully expected one or both to come home pointing out that all their friends watched [show of the moment] and why couldn’t they?… and that we’d negotiate something reasonable in terms of watching guidelines and re-establish cable or whatever was current at the time.

Except that it never happened. Not once, ever, did a girl in our house raise the question of why we didn’t watch TV or ask if we/they couldn’t watch some program that everyone else was watching. Or complain about being deprived. So, we just never got back in the habit. We own televisions and we rent movies, but we just don’t watch broadcast/cable content. So, we’re pretty out of the mainstream and certainly not used to the daytime offerings. I don’t feel like a sheltered prude, though I was now and then startled by some of the topics and language right there in my face in the MRI waiting room, especially. (The staff there let me sit in hallway chairs across from the scan room instead of in the loud waiting room. They were really nice about it, saying they try to keep their door closed to shield from the noise, which I guess raises the question about who sets the volume and why must it be so loud?)

In correspondence with an east coast friend this week with whom I shared a good deal of the 9/11 early morning experience, I was reminded that Michael and I didn’t even see the twin towers come down more than once or twice that day. Kearney was on an airplane—on her way to a study-abroad gap year in Greece—when all flights were grounded. The program had called early in the morning to tell us “something is happening, don’t send her” but she’d left on a crack-of-dawn flight to Detroit and was already airborn. That was stressful. As the day unfolded, the brother of a friend here who lives in Detroit went and scooped her out of the airport (if terrorists were attacking airplanes, an airport seemed like a particularly bad place to be), and took her to his home. Michael and I got in the car and started driving to Detroit to pick her up. It was a strange day, as all we had was the radio to tell us what was going on. The coverage was chaotic and no one really knew what was going on, right until about 5 p.m. when the whole situation seemed to come together and a coherent story unfold. J’s kind brother, when he heard about our progress, put Kearney in his car and started driving to meet us—and he drove her two hours towards us to shorten our drive (note this means he then turned around and drove another two hours back to him home), as well as having left work to go get her from the airport and take her to his home for most of the day. By the time we got back to Urbana, we were all pretty tired. We turned on the TV and for the first time that day, saw the towers come down. Seeing it once or twice was a lot, in our state, and we turned it off and never saw it again.

Just to finish the story, now that I seem to have veered off on a topic completely different than the peace or not of medical waiting rooms, Kearney’s entire experience of the day was of the kindness of people: the woman from her flight who loaned her cellphone to Kearney so she could call us once they were on the ground. The woman from the line in the airport who’d gotten a hotel room and left to go camp in it, but turned around and returned to the airport to offer to share it with Kearney until her parents could arrive. The airline employees who went out of their way to make sure that she was ok until she was picked up. J’s brother and family who picked her up and took her into their home. And since the airport had every TV turned off that day and we mostly talked (or she slept) on the way home, the horror of the situation was pretty remote to her at first. She had encountered nice people wherever she went and had no concerns about getting back on a plane and trying the whole trip over five days later. (The dump search of her bag at the airport that morning was pretty traumatic, though.)

So, I’m wandering. Hard to tell if this is what I’ve become, or medications, or recovery from brain surgery. That’s the oddest part of the current phase of this adventure: I don’t really know the answer to that question a good deal of the time. The renewed steroids have knocked down the headaches and swelling pretty completely and I feel back on a recovery track. Yesterday brought both physical therapy and strength training. Here’s an interesting development: I cannot walk backwards with any steadiness or stand in place and turn clockwise without losing my balance. My strength is very uneven. We’ll work on all of that, as well as the arm and hand. I’m cultivating patience, as the answer to this is going to be what it’s going to be and, as H says, “slow is the speed of the day.” We’re back to Dr. Donny’s wisdom: “We’ll know more next week.” Sometime, I’ll explain the overwhelming significance of that tag line for a very long period of our lives. Meantime, it is one of our family’s enduring pieces of wisdom, right next to Kearney’s “Mommy, I’ll do that another later.” Another later is a great concept, by the way, if you’ve never used it. I’ll bet a lot of the vexing things on your plate today could well be handled “another later” and you could do something personally interesting, gratifying or reinforcing today. Carpe diem.

Thursday, September 25, 2008

The Good Problems to Have

Someone out there should be writing the Brain Surgery Diet Book. Both Suzy Becker (author of I Had Brain Surgery, What’s Your Excuse?) and I have found this experience, among other things, to be a great way to drop 5-10 pounds. (Please note that this means I’ve been reading more!) It’s only been two weeks since the surgery but even though I eat everything in sight—and am enjoying my chocolate without restraint—I weigh less than I did when this adventure began. Since that cannot be attributed to my activity level over the two weeks following surgery, diet book authors, heads up.

It was wonderful to find that yesterday’s mood was related to my physical condition and it and the headaches both righted themselves pretty quickly after the great consultation with the neurosurgeon and the administration of the steroids. (Ok, maybe less reading going forward for a little bit longer.) My internal script has a default setting on self-critical and while as a mother, teacher, friend and supervisor, I’ve worked pretty hard not to pass that along, I’ve never much altered how it applies to me. Maybe now is the time to think some more about that, since as L points out, fearing that I was malingering or being a slug two weeks after brain surgery probably isn’t the most rational of responses—and not that helpful, either.

The comment from yesterday that both the steroids and the pain meds are unsung heroes of medicine bears attention and thanks. Also, that suffering is not ennobling. Check. Our consultation yesterday with a different surgeon (our primary was out of town and his co-surgeon occupied with other procedures) was wide-ranging and fascinating on many counts, not least of which the portion about the pain meds and what a reasonable, expected trajectory should/might be. He asked if I get a high from them (no) or if they make me drowsy (no). Given that, he said, when the pain goes away, you’ll stop taking them. Until it does, keep taking them. End of story. I can do that. The headache was knocked down pretty quickly following taking the steroids and a nap—though I’m awake at 5 a.m. again. Since today brings another strength training session and physical therapy, it will also bring nice long naps, so I have a system in place for this. Yesterday’s occupational therapy started us on a regimen we’re working on twice a day; we’ll go back twice a week. The range of motion in my shoulder/arm is already better than it was after surgery and we have a plan for continuing to improve. Yeah. I look forward to regaining full use of my arm and hand.

The surgeon’s response to the size of the tumor (awe) and commentary on how lucky I am were also nice reminders to count our blessings here for an event that’s two weeks old (surgery two weeks ago yesterday) or three weeks old (diagnosis three weeks ago yesterday), depending on where you start counting.

We had an interesting chat about the surgical technique for removing meningiomas: he asked if we knew what approach had been taken, and we supplied what we knew. The surgeon told us he’d had to “pulverize it” to remove it. This stimulated great enthusiasm from the guy we were visiting with: “Great choice. Classic!” In this technique, you suck tissue out of the center, let the tumor collapse in on itself and then go around cutting around the edges, tying off the capillaries and blood vessels. The enthusiasm for the technique was neat and we had a fun conversation all the way around.

It also set several markers for some items we’ll follow-up with our surgeon on our return scan and visit in mid-October, and generally continued our very positive feelings about the quality of care across this whole experience. To keep this from getting too long, I’ve posted separately some of the commentary Kearney and I developed (with review from Michael and Shea) about our experience.

Thanks for being out there caring. Hope your Thursdays are/have been wonderful.

A Review of Our Hospital Experience

Review of Hospital Systems through the Lens of One Family’s Experience

Here are some of the items Kearney and I noted in our review of our trip through hospital-land, in addition to yesterday’s suggestion for double-sided staff ID tags. Out of the 60 people for whom we kept records over our journey, we submitted by-name commendations for 24 of them. That’s a pretty impressive record, in and of itself. We had only one truly bad experience with a medical staff member across that whole time. It was short and we figured out what we needed to know from the next really wonderful person.

New Family Rule. We have a new family rule that no member of our family will ever be left alone in the hospital for even one minute if we can avoid it. There were several times when the family was so tired and I was sufficiently stable or getting ready to sleep that the most prudent course seemed to be for them to go home to rest. This turned out to be a mistake often enough that we stopped the practice, even though it added to the exhaustion load. This is because of the size of the system and the sheer number of individuals and interactions that occur. No matter how alert, the patient simply cannot absorb or retain all the information that passes by or really cope with events alone. We lost information or took recovery setbacks every time I was left alone.

Checking In for Surgery/Surgical Waiting Room. Carle’s system for surgical check-in that let the family stay around until I was wheeled off to the operating room was good for all of us. The staff were helpful and attuned to our needs as well as their own tasks; it was humane and well-organized. The surgical waiting room with the surgery liaison nurse is a superlative system and reduced tremendously the stress of the whole experience for those waiting. It’s well set up, well run, and the quality of the nurse performing the liaison duty on September 10 was of the very highest caliber. The calls from surgical nurse—whom we’d all met in the surgical preparation suite—every hour or so were also very helpful and appreciated. The information provided supported Michael and Kearney’s periodic posts on the progress of the surgery. Boffo.

A Superlative Shift Change Procedure. As the nurses among you commented, shift changes were ragged and the problems that occurred were most likely then. Another reason to have family there the whole while. We saw one superlative hand-off on the surgical floor, when Ruth and Linda came to the room together. Ruth introduced Linda to us, and then she read from her notes about my status, my meds, the care, the problems I was having and what she was watching. She reported in front of us and then asked us if we had any questions for Linda. Linda made eye contact with each of us and told us how long she’d be around. It didn’t take long, it was incredibly reassuring and we felt completely in the loop about all that was going on. Impressive. Plus, a human being checked in with us during what were otherwise totally dead periods.

Oddities; Further Improvements Needed; Suggestions.

Orientation Needed. Overall, the level of care was very high. At the same time, it would be hard to call any of the system patient-centered. This is a very large, complex system and it marches to its own rhythms and mandates. The difference between the nurse-centered environment of the ICU and the other-centered surgical floor was striking. All primary contacts in the ICU were with nurses. As we moved to the surgical floor, the tone changed and there wasn’t much explanation or orientation. Even a short explanation to family and patient would have helped, especially about the hierarchy of care roles. The role of the health care technicians could have been explained to benefit. They were great, adding real gentleness and humanity to the stay and they took the time to make daily human contact. Still, knowing who/what their role was would have been helpful.

Learning Style Questions. Many staff members asked about best learning style before they started to share information: “do you get information better by listening or reading?” was a common question. This was yet more evidence of extensive and reasonably effective staff training. Not all of them knew what to do with the response once they had asked, but the question was asked quite often and the effort to systematize this was clear. Kudos for effort.

Discharge Instructions. The written discharge instructions are a nice touch. Being handed a written sheet and then going over it is a great plan. (More evidence of attention to learning styles.) It’s a good start but the template needs improvement. Not having a coordinated medication plan, for example, is goony. We’re educated, comfortable with technical terminology (Kearney is a grad student doing research on cancer cells) and we were still unsure for days when we were at home that we were handling it properly. This was far more complicated for us than it should have been.

The form begins with a nice concise statement of its purpose, and lists the medical professionals responsible for the instructions. It has date and time and my clinic numbers, etc. Then come the following headings, each followed by inset information:
STOP taking these medications
CONTINUE taking these medications
CONTINUE these medications, which have CHANGED
START taking these medications
There is not a single unified plan for taking medications going forward. Once we got home, the interaction of these four sections caused us tremendous confusion and we went over and over and over them to make sure we’d gotten everything straight. For the first few days, we weren’t ever confident that we had it right. If we had this much trouble, we’re thinking some more improvement is surely possible. There isn’t some program out there for entering how often different meds need to be taken than can produce one or two sample schedules that would work and could be adapted?

Even worse is the phrasing of the instructions for one of the key medications, the steroids:

“Take 1 Tab by mouth 3 times daily. Take 4 mg tid for 3 days then 4 mg bid for 3 days then 4 mg q day for 3 days then d/c.”

We could and did look this up to puzzle it through (Latin and abbreviations) but at least in the discharge instructions, regular old people-talk would have been nice…

Marketing Call on Monday. Monday morning, after a late Saturday-afternoon discharge, we received a marketing survey call asking about hospital experiences. As this call came in well before we had any follow-up appointments scheduled and before we’d had any contact with any medical staff on any matter since leaving the hospital, it was a dissonant moment. We were still shaky on the medication schedule and were still in a period of flux and uncertainty. This call would have been better delayed a day or two.

General Staff Attitudes. As a general rule, the staff we encountered seemed fulfilled and content in their jobs. At least one health tech is being supported to get a nursing degree and a number of people talked about being given schedules that varied from the norm in order to accommodate their own life needs. We visited with a lot of staff members, and most were quite positive. The frustrations we did hear about were generally focused on making things better not complaints or gripes. That’s unusual in a large organization and worth noting.
Stars for effort. The white board with information in the hospital rooms with the names of the people on duty, orders (regular diet, use the breathing exercise device every hour), room phone number, etc. is a great idea. When I arrived on the surgical floor, the first and second shift (nurses and health techs) both kept it updated and it was most useful. After that, it was used only sporadically. It would have been nice to see that kept up the whole time.

Wednesday, September 24, 2008

Small Setback: More Steroids

After struggling with renewed severe headaches (especially bothersome at night) after they’d been receding pretty steadily, we got in touch with the surgeon’s office today. They ordered another CT scan and we then had a consultation with one of the other neurosurgeons as our surgeon and his co-surgeon were both unavailable. The surgeon with whom we met was very thorough, looking through all the scans and case notes and questioning us pretty closely on a variety of issues. At the end of the visit, Tina’s back on steroids for another week. We also discussed the possibility of hormonal effects from a change in pressure on the hypothalamus now that the tumor is out.

Today’s scan held lots of good news: her brain is re-occupying the tumor-void impressively well, there’s little visible edema, no blood and little air in the cavity. He was most impressed with the size of the tumor and emphasized just how lucky we are that Tina’s recovery has been as smooth as it has been, given the original size of this thing.

Beginning Part Three?

Moving from the direct aftermath of the surgery to the longer-term recovery process is real progress and I’m deeply ambivalent about it. This week marks the third of the talks I’d been booked to give that have been canceled or postponed due to this medical adventure. In my old life, I would have been flying out this afternoon for that event. It seems completely reasonable to believe that, after time for recovery and rehabilitation, I’ll be able to resume that part of my life. But for the moment, I’m both watching the old life go by and knowing that I’ve left people I like and respect in the lurch either trying to fill a conference speaking slot on pretty short notice or rescheduling a program they’d been planning for some time in advance.

At the same time, I’m spending more time alone/stepped out of the world and inactive than I can ever recall. Probably, that’s what led to my over-doing it Monday, because it just felt so good participating in regular life activities like going to the gym and teaching a class. However, let’s get real and keep this in perspective: I’m incredibly lucky. I had a brain tumor, it’s completely gone, it was benign, I’m still my old self with only a limited range of impairments (most of which we can expect to go away over time) and I even still have a head full of hair. The recovery is going unbelievably well. We’ve had an outpouring of love and support and reconnected with people we love. This is even happening in nice weather, so I’m able to enjoy being outdoors in the sunshine. (It reminds me of having summer babies when any time either girl got restive we could just go outside. The simple act of walking through the front door almost magically cured all crying. Plus, having summer babies meant being able to go to the swimming pool during the day, which felt decadent and deeply pleasurable. ) Brain surgery is no small deal and the ease with which I’ve gotten this far is cause for serious celebration and thanks. I feel all of that.

Even more, I’m determined to use this experience to temper (if I can!) my rhythms and arrive at a better balance of on/off, driven/relaxed than where I’d been before all of this. I can do that. I think. I hope. The first challenge is better awareness and better pacing. Here’s life giving me an opportunity to overcome (ok, that may be a little strong; how about tone down) my impatience. Let’s go. Monday’s costs lasted longer than I would have hoped, and it was a pretty good lesson. We’ll see if I’m as good a learner as I think I am, or should be. Please note that I did not try to attend my Tuesday class. [Huge thanks here to A, who’s taken it over and is providing the students with a great experience.]

To reinforce all of this, I had a visit with friend K yesterday, who came by with lunch from Siam Terrace. Yum. After she left, I sat in the sun (and ate the piece of lovely dark chocolate she’d brought) and browsed the knitting book she also brought. For you knitters out there, it’s the second Mason-Dixon knitting book, and does it ever have some fun stuff. It will be a while before I can do anything complex, but the child’s fern sweater is calling to me. One of the Mason-Dixons is a former lawyer and there’s a lovely essay about how knitting is a great use of a law degree. I like their attitude. Kearney frequents a yarn site called Ravelry, which turns out to have a Meningioma Mommas sub-group among its members. Some of those knitters report not being able to knit lace or follow charts after their surgery. That doesn’t worry me, since I’ve never knit lace to begin with. We’ll see about charts, if I pursue the fern sweater farther into my recovery.

On other fronts, as the steroids taper down, I’m waiting to see if the cravings I’ve had for ice water and salt also recede. I’ve always been a big drinker of water but never with ice until all this started. Since the first night in the hospital, there’s barely been enough ice water for me, and since I’ve been home, hardly enough salt. Michael and I went low-salt decades ago when we helped Dorothy, my step-mother, re-tool her cooking and diet in the aftermath of her heart problems. We’ve been low-salt eaters ever since, which makes it all the more odd that I’ve probably eaten more salt on my food in the last two weeks than in the last two years combined. We start occupational therapy today and physical therapy tomorrow. We’re waiting for my scalp to become less “boggy” (fluid to dissipate) as it re-attaches to the bone. My, we’ve learned a lot!

Tomorrow, thoughts from our hospital journey. Meanwhile, here’s the simplest of the suggestions we sent the hospital/clinic folks: staff badges should be double-sided, with the same information and picture on front and back. A remarkable proportion of the time, the ID badges staff members wear are flipped over, so all that shows is the blank back side. If they just printed the same info on both sides, that wouldn’t ever happen.

Take a moment today to turn your face to the sun. I send you my caring and my thanks.

Tuesday, September 23, 2008

Still Learning to Take the Tortoise-Approach

Tortoise. Tortoise. Tortoise. Yesterday was a great day and I overdid it.

We restarted our strength training and it felt fantastic. I was comfortably able to do twelve minutes on the treadmill at incline (we climbed steep hills this summer in France and have been trying to keep that gain) for a cardio warm-up and then I was able to do most—but not all—of what I have been doing all along. We were warmly welcomed back and being at the gym again was great.

Michael and I started strength training together for our birthdays almost two years ago, in large part because of how often I was falling down at the time, not to mention general aging and health issues. Since my mother died so young (47), we don’t have much health history for her, and we’d watched Michael’s mother shrink over the years, so all the way around, strength training seemed like a good idea. It’s been something we do together as we move closer to our empty-nest years. While I’m not big on the actual exercise part of it, it has been an unexpectedly positive experience. One completely unanticipated aspect of it that I’ve particularly enjoyed is the part where I just do whatever the trainer says to do: if she (our first trainer) or he (now) says “you should be able to do 15 of these,” I just do them. I don’t have to make any decisions or think about it, just do it. Letting go in that way—and clearly getting stronger throughout—has been great. And, the difference it’s made in my balance has been remarkable. Except for stepping in a pothole and twisting my ankle while carrying a tray of food (my excuse for not seeing the pothole), I hadn’t fallen down since we’d started the training. Even then, I was able to catch myself and save the tray of food, which felt like, and was, a great victory at the time. I was steadier on my feet than I’ve been in years. Of course, now we’re beginning to understand that I wasn’t just a clumsy oaf (my self-image), but that my balance had probably been tumor-affected for some time. I’m still working through this part of what’s been central to my self-image for so many years. It’s unlikely that it’s just been the tumor, as I’ve never been all that well coordinated and my hand-eye coordination, in particular, are terrible, as I am profoundly near-sighted, with eyes that don’t match, which affects my depth perception. Plus, my preference would always be to read a book before I’d go exercise.

Here’s the perfect illustration of my point: when Michael and I first took up many years ago, he and his friends played pick-up softball on a field across the street from the Meadows off Race in Urbana, near the old Bliss Drive housing area. (Where my parents, as so many faculty of their generation, first lived when arriving on campus.) I’d never played softball, and his friends were a particularly generous group (then and now—nice knows nice, it turns out) who encouraged me to join in, even though I didn’t know what I was doing and wasn’t ever an asset to the team that ended up stuck with me. I still remember as an epiphany the moment in which it became clear that when other players said “heads up,” it wasn’t a sports euphemism for “close your eyes and duck” as I’d always understood it. They really meant that I should look up and try to catch the ball! They laughed until they fell down, in the nicest possible way, when they grasped the extent of the insight I was experiencing. I’ve heard about it on and off for years.

Anyway, the strength training has been positive for us in many ways including providing a strong foundation for this recovery of mine. There are motions I cannot yet produce, especially with my right arm, and we experimented to discover what I can and cannot do. Since we’re doing all the training and therapy at Mettler, the physical and occupational therapy will all be coordinated with the strength training. It felt great to be back there and while I’m not as strong as I was before surgery, the number of things I could do that weren’t much worse was encouraging.

Then I went home and slept for an hour before a nice visit from C, the source of the information on crabbiness in the index of her Brain Tumor Recovery Manual. While we visited, she edited flowers to refresh them all and told us that lime seltzer water will help prolong flowers—nice to know. We found a stray staple on my head, which Michael removed using tools not quite as cool as the surgeon’s but equally effective. Then I slept for another three hours.

Because I felt strong and good, I ate something and went to the second half of my law class. That was a terrific experience. This class has one of those great group personalities that happen now and again and are so special when they do. The second half of yesterday's class plan is a particularly fun and illuminating group negotiation. Both sides want the same thing, but because they’re so afraid of losing leverage by being the first to put their goals on the table, it comes to impasse a remarkable percentage of the time, which is a great teaching/learning moment. Being there for this negotiation was fun, as this group did two or three novel and skillful things in the way they approached it, though it did get messy in the end. They settled, though, which is more than many classes ever manage to do. I was very happy to see them, and they were welcoming and warm. It was a real spirit-booster.

It’s pretty clear that I’m not going to have the stamina to teach this class alone for a while, so wonder-woman friend who has been handling it for me says she’ll keep coming and will be there with me as long as I need. That’s a real friend. It’s also pretty clear that I’m not going to be writing on a blackboard with my right hand anytime soon. Michael thinks maybe I could write on an overhead projector in lieu of the blackboard, since if my elbow is supported, I can write more often than not. Plus, wonder-woman says she’ll be there and SHE can write on the board… brushing off completely the cost in her life for adding this in this chunk of time and effort to an already-full load.

Anyway, I’m working up to admitting to having overdone it. Even though I was testing as I went and making sure at each point that I felt ok and even though I sat down through most of the class (they were negotiating, and we were watching, after all)… ok, I wasn’t as clued in as I should have been to my energy level. Another bad night with the return of headaches/pain resulted. I’ll learn from this. Really. It’s just going to take me time to learn my new energy rhythms and limits, because it’s just not the way I’m used to living. This is the new me, though, so I’ll get the hang of it.

Wasn’t Kearney’s post yesterday wonderful? What a terrific human being she is. We are so proud, and of course we need her—just not in the same way we did when she was here, filling in all the gaps and taking care of me and us. She was here for us when we did need her and we know she will be again, should the situation change. So what we need for her to do now is have a fulfilling and productive life in Madison doing her research and making progress on becoming who she is going to be. She’s right, of course, about how our questions and worries were misdirected. It’s worth thinking about, as we gleaned many of our questions from our research and still never hit some of the really important ones. One area dawning on us now to ask about, for example, are hormonal effects. Either we have some massive coincidences going on or we’re seeing some. Time to go back and do some more research.

We mailed off our full document with both the counting results and our suggestions/reviews to the hospital and clinic CEOs as well as our two main physicians, and it occurs to me that it would be polite to let them get it before we post our suggestions for improvement in this quasi-public place. Plus, I’ve blathered on today, so we’ll postpone our more personal, qualitative review of the medical adventure for a day or so.

At least in central Illinois, we have on tap another beautiful autumn day. The leaves are just beginning to turn and the quality of light filtered through the green and gold is stunning. Take a walk at lunch if you have nice weather where you are.

Monday, September 22, 2008

a few thoughts from Madison

You know, to me, the most striking thing about this whole experience is realizing in retrospect that we worried about completely the wrong things at almost every step. Fortunately, the one worry that I think was completely justified (would Tina as we know her survive this?) turned out to be a complete non-issue; I am convinced that this is due more to the quality of the surgical team and her fantastic beginner's luck than to the worry itself being unrealistic.

Our rating system for hospital personnel missed some critical points, but did change the whole nature of our voyage through the medical system in ways we had not anticipated. (We were rarely invited to take an active role in hospital life, and doing it on our own, even in this small way, made a huge difference.)

This blog, which began as a response to our worries about keeping people informed and preserving our peace, made everything feel much more solid and provided emotional support in ways we never expected.

One of my big worries was how we would hold everyone's attention (including our own) once the really dramatic bits were over. How can months of recovery compete with the five-minute news cycle? Brain surgery is so last week. (OK, two weeks ago, but you get the point.) My mum captured this perfectly when she remarked after the surgery, "it's benign, it's out, it's done now." If the woman who had her head cracked open was tired of this story, how would all of you react?

And I was wrong. (So far.) While I know folks aren't checking the blog the way they did for news of the surgery and its immediate aftermath, it's clear that some of you are still out there following our story, and we've continued to receive an outpouring of support from everyone.

Probably a lot of my fears stemmed from my own feelings of guilt about deserting my family (it still feels like that, even though I know they don't need me and are moving forward in amazing ways).

But mostly, we just worried about the wrong things out of ignorance. Before the surgery, we asked lots of questions about taking care of the wound, signs of infection, and so on, but not a single question about potential side-effects of any of the medications she'd be on. With such a great medical team and a Walker on triple antibiotic ointment duty, infection probably wasn't much of a risk. Meds, on the other hand, always do things they aren't meant to. The morphine caused terrible itching, the steroids caused problems with reading, the valium made her anxious. We were quite worried when each of these symptoms cropped up (was she getting a rash? did she have brain damage?), when a couple of questions could have told us all about what the meds might do. The effects of the steroids, for example, were apparently completely predictable, but we didn't know about them.

I really think that we ought to teach people more about health and the medical system. The internet is a great source of information, but a few days' training on practical skills might do much more good. Maybe we should teach kids about that along with the food pyramid and the importance of tooth brushing. There must be good guides out there about how to be a patient (or family), but it's information that could really stand to be more widely disseminated.


Counting for Positive Deviance

In a change of pace from recent posts, today brings a summary of the counting exercise that Kearney and I (with back-up from Michael and Shea) did during our medical adventure. We’ve written up our experiences and will be sharing them with the hospital/clinic folks, as well as posting some extracts of them here. We have two sets of observations: our counting results and then our thoughts on the systems we saw in operation. Today is counting and tomorrow, I hope, will be some of our systemic comments. As background in that area, Bob Sutton from Stanford (author of the No Asshole Rule, which I use as a text in my MBA ethics and leadership class) has a terrific article in the McKinsley Quarterly on “The Ergonomics of Innovation” about the campaign of the Institute for Healthcare Improvement’s campaign to reduce by 100,000 the number of patients who die in hospitals from preventable errors. You can download the article from his website (bobsutton.typepad.com) if this topic is of any interest… it’s a short, well-written and interesting piece.

Otherwise, we generally had two days of slight slippage this weekend: neither days nor nights went very well as we lost the pain-control rhythm for a while. We think we’re back in a good groove today and the night went pretty well. Plus, thankfully, we’re closing in on the end of the steroids.

This week represents another new phase in recovery: I’m restarting my strength training today, occupational therapy begins on Wednesday and physical therapy on Thursday. Following the good advice of friend L, I’m working on internalizing the tortoise-mindset (as opposed to that of the hare) for this process: slow and sure, with my eyes firmly fixed on the long-term goal of full recovery. The tortoise slow-and-sure approach doesn’t come naturally to me, but now is surely the moment. Social psychology research emphasizes the importance of making a public commitment using the consistency principle, so now all of you have seen me commit to this goal. I know you'll hold my feet to the fire.

And now, for some of our counting results:

Kearney and Tina decide to count
In the epilogue of his book Better, Atul Gawande advises doctors to become "positive deviants," with suggestions for making a worthy difference in the world. Among his suggestions for achieving this, he says "If you count something you find interesting, you will learn something interesting." (Afterword, page 255). This rang a bell for us as we were entering our medical adventure, so the two of us set up a rubric for tracking our interactions with the staff members we were going to encounter. We created a spreadsheet and printed blank sheets that we taped to the back of our hospital notebook. Our methodology was simple: we logged every person we encountered, giving ratings of five simple factors on a 1-5 Likert scale. (We later modified one of the elements to a simple yes/no.) We were sufficiently diligent that we found only a few entries that were incomplete when we began this summary.

Summary of Counting
From Thursday, September 4, the date on which the meningioma tumor was first diagnosed via a CAT scan, through the craniotomy Wednesday, September 10, and until discharge from the hospital on Saturday, September 13, we logged interactions with more than 60 staff members at Carle clinic and hospital. This included staff during:
• the initial diagnostic CAT scan (Thurdsay, September 4)
• an appointment with the surgeon to consult and schedule the surgery (Friday, September 5)
• an outpatient MRI scan preparatory to surgery (Monday, September 8)
• a pre-op insurance clearance (Tuesday, September 9)
• a pre-op medical record session (Tuesday, September 9)
• a pre-op physical and a consultation with an anesthesiologist (Tuesday, September 9)
• check-in and preparation for surgery (Wednesday, September 10)
• a pre-op MRI and the surgery (Wednesday, September 10)
• time in the recovery room (Wednesday, September 10)
• time in the surgical intensive care unit (two nights, Wednesday and Thursday, September 10 and 11)
• recovery time on the surgical floor (one night, Friday, September 12)

For each staff member we encountered, we rated five items on a 5-point scale:
5 completely top-notch
4 pretty good
3 neutral
2 not so good
1 terrible or non-existent

Items rated were:
• did the staff member introduce him or herself to us?
• did the person don gloves or wash hands before touching the patient?
• the listening skills of the staff member
• the clarity of the staff member’s communications/instructions to us
• the helpfulness of the interaction as we perceived it
Given the items, some of the ratings were really yes/no while others were qualitative assessments of our responses. We converted the “washed hands/wore gloves” from the five-point scale to a yes/no scale after the fact, but left the “introduced self” on the five-point scale, as there were qualitative differences in the nature of the interactions.

The staff we encountered and on whom we kept records fell into the following categories:
• 4 physicians (2 surgeons, 1 pre-op physician; 1 pre-op anesthesiologist); we did not meet any of the hospitalists who presumably were around and about during my stay; the surgeon was present every day, sometimes twice a day (and during the first night as well)
• 23 nurses
• 4 health technicians
• 3 scan technicians
• 5 blood lab techs/EKG tech
• 6 therapists (2 PT, 3 OT, 1 vocal)
• 3 food deliverers
• 10 receptionists/schedulers/managers
• 2 uncategorized/unknown

Numerical findings.
Scores at the highest levels across the interactions:
69% (36/52) interactions in which an introduction was appropriate occurred at a “5” level
59% ( 19/32) individuals visibly cleaned hands or donned gloves before touching patient (where appropriate)
66% (31/47) had listening skills that we rated at the highest level, “5”
52% (25/48) interactions in which information was conveyed were ranked at the “5” level
60% (30/50) interactions were rated at the highest level of helpfulness

Aggregating the two highest scores (4 and 5):
69% (36/52) interactions in which an introduction was appropriate
59% [(19/32) individuals visibly cleaned hands or donned gloves before touching patient]
77% ( 36/47) listening skills were rated at a high level
71% (34/48) interactions in which information was conveyed were effective
72% (36/50) interactions were rated at a high level of helpfulness

Eight of the 60 staff members (13%) we encountered scored at the lowest level across all interactions.

By Role
Three of four doctors received the highest ratings for every interaction.
One doctor (the pre-op anesthesiologist) was hands-down the worst interaction across the entire time period, in every dimension.

19 of 23 nurses received the highest ratings for every interaction. There were four nurses whose names we never learned; who simply appeared, did things to the patient and then left. This was disconcerting when it occurred, especially compared to the quality and consistency of care otherwise.

Two of the three radiology technicians rated at the highest levels. The third was more ancillary to the process, though an introduction here would also have been nice.

The five lab techs did not consistently introduce themselves, but received the highest ratings on every other aspect of the interactions.

The six therapists from the different services had a mixed record: two were superlative, two were fine and two we never learned their names. They just appeared, took actions, and disappeared.

The three surgical floor Health Care Techs did not wear gloves for taking vitals (probably not necessary?) and otherwise received the highest ratings on every interaction. They added considerable humanity and gentleness to the experience.

Ten office staff members (receptionists, schedulers, etc) were generally effective and rated well. They were more mixed than other categories and also had a lower rate of interaction.

Three different people delivered food ordered from the menu. None introduced themselves (not really required) and each was gloved, personable, helpful and pleasant. Each had a nice manner in getting things established well for being able to eat.

There were two items we didn't track that, in retrospect, we wish we had, especially after reading Sutton & Rao's article.

Patient Identification. We didn’t tally the consistency of patient identification before treatment interactions, and in retrospect wish we had been alert enough to the systemic issues to have done so. Our sense is that this was done at a very high level of consistency. Our collective sense is that date of birth was asked as a matter of course by most, if not all, staff members, before any interaction began.

Administration of Medications. Similarly, we didn’t log the administration of medications and wish we had. Again, our sense is that this was also a very deeply routinized process executed with great discipline: the hospital ID bracelet was scanned before any medication was provided and each and every administration checked in advance on the computer and then entered on the bedside computer afterwards.

Overall, this is an impressive track record of a lot of people in a large and complex undertaking.

The counting we did along the way gave us a joint mission, let us feel that we were not totally helpless/being acted upon as we careened through this most peculiar experience (a brain tumor??) and grounded us. Feeling that we were still us, capable of observing and assessing helped all of us, we think. A side-effect we didn’t expect was that, eventually, the aggregating numbers began to reinforce how well this system in which we were caught up was working on a moment-to-moment basis. As the positive numbers continued to pile up, that realization affected our attitudes in helpful ways. We hadn’t anticipated that—actually, we hadn’t really anticipated anything other than just having an activity—and it was an interesting effect that probably made us easier to deal with for the staff we encountered, too. Finally, the whole mission gave us a handle on being less completely self-absorbed than would have been easy to become.

We’d do this again. Here’s hoping the need never arises.

Sunday, September 21, 2008

Thoughts about Saturday and my progress

We have been encountering our first technical problems blogging. We’re getting email saying that people are having trouble leaving comments here, and yesterday, we never did succeed in getting an accurate time/date stamp on the posting. We're a bit confused, since the using the software has been so smooth until now. We'll keep working to get it sorted out. We have found on Macs that the software is much happier in Firefox than Safari, but even that didn’t seem to help yesterday. Your comments mean much to us so we do hope you'll keep trying.

Saturday was a forward-progress day, with only very small setbacks. I was awake for a longer stretch at one time than since before surgery and had lovely reconnections with family and friends. My energy is growing and the pain is better. Reading and short-term memory, which had been improving, took a setback after a steady improvement until then. All told, though, a positive day.

M, a friend from one of the hardest periods of my life, high school after my mother died, drove over from Indianapolis to visit, bringing King's rib tips. Were they wonderful! The visit was deeply comforting, despite the several disconcerting events where I completely lost track of my train of thought. M and Michael were really nice about it, of course, as two of the nicest men in the universe together in one room, but it didn’t feel very good. Our lives have been intertwined for a long time and being together was soothing and peaceful.

For several decades now, we’ve been in the hands of R the hair magician and yesterday, he used his care and skills to help get more of the caked-on stuff out of my hair and scalp. It felt wonderful and it was also nice to be participating again in an activity from our real life. He wouldn’t let us pay, saying it was his way of offering care through this time. Friendship and love sustain us.

Yesterday brought wonderful notes of love and support and news from my mother’s family, from one of my aunts and a cousin with whom I’ve been out of touch for some time. They have been following this blog and pulling for us. Being back in more direct contact is another source of joy.

When I can, I’ve been reading and enjoying Suzy Becker’s I’ve Had Brain Surgery, What’s Your Excuse?, brought over by friend D. The author is an artist/cartoonist, and I’m enjoying reading it when I can. Her tumor was also on the left side in the parietal lobe, but not a meningioma. Similarities and differences among people are so interesting. The thing that’s been most striking to me so far is her initial ambivalence about removal surgery. To say that was not our reaction would be a gross understatement. As soon as we knew there was something alien in my head, our reaction was immediately and unanimously that it needed to come out. Right now. We set to work on finding the right doctors as quickly as we could, focused entirely on the goal of Get It Out. Cancerous, non-cancerous, we didn’t care, we didn’t want it there. Elapsed time from diagnosis to surgery: under a week. Suzy’s elapsed time was more like five weeks. I do know that I’m an impatient person (I work on this all the time, even if you cannot tell) but I think this is at base about something much more deeply rooted in personality than impatience. It’s food for thought.

There’s a lot to work through about this experience, and it is going to take some time. I’m working on it, along with thinking carefully about answers to the thoughtfully-posed, caring questions you have sent about why I’ve been so driven to work on grading student papers at this time in my life. There are a lot of parts to the answer, but the most fundamental truth is because it lets me keep being me. Becker’s book ultimately revolves around the fear of losing herself. Keeping this blog (thank you for reading it) and focusing on the papers help me feel that I’m still me. I may, and probably should, become a different (we hope better?) me after all of this, but the most basic truth and fear that underlies all else is losing who I am. Your affirmations that I still sound like Tina have been powerful positive medicine for me. Thanks for being out there and caring.

Friday, September 19, 2008

Up Early Again {technical problems posting time is Saturday Sept 20}

I got all the way to five a.m. today before the night was disrupted, and though it’s still dark outside, I have been informed by people I find to be reliable and trustworthy that there are people who get up at this time on purpose and lead productive lives in the process. Thus, rather than seeing this as an interruption in my sleep, I’m framing it as trying out a new approach. Given the small pleasures I’m enjoying so much these days, I anticipate a lovely nap later in the day, so this seems like a great plan all the way around. As the pain both subsides and is under better control, I’ve had some great naps. Please let me use my current experience to reinforce what we all know (and is so, so easy to forget) how much we get to choose to enjoy (or not) our daily experiences from sitting in the sunshine to appreciating clean hair or wonderful flavors to watching happy dogs play with each other. Given how tightly wound I’ve been most of my life, my own awareness of this has been stronger some times than others, so I’m hoping you’ll take this reminder in a friendly and positive “oh, yeah” kind of way and find yourself a sunny moment or two to relish today.

Yesterday, as we were on our way to the surgeon’s follow-up visit, Michael and I had one of those moments where we revisited how deeply connected we are to each other and at the same time how profoundly different. I don’t think anyone who knows us or who has followed this saga can have any question about how devoted he is to every aspect of helping me through this. He and the girls have and will stop at nothing to make things easier, better, more comfortable. At the same time, a Walker-ethic is a powerful thing. While we both have what I think could be, and has been identified labeled as such by comments here, a mid-western life and work ethic, Walkers are in a class by themselves in the “do-it-for-my-own-self” category. I’ve learned over the last 35 or so years there’s virtually nothing you can do for a Walker if there’s any feasible way he or she can be self-sufficient, especially in some clever or ingenious fashion.

So as we approached Carle’s South Clinic (for those out of town, there’s massive construction underway with a large new breast cancer center, spine center, work on the parking garage and entire Carle campus), I’d idly thought it might be an appropriate occasion to take advantage of the current valet parking situation: you pull up into the circle drive in front of a south clinic door and they take your car away while you enter directly by the elevators. Neuro Sciences, where our surgeon hangs out, is on the sixth floor of the clinic and this seemed to me to be the most direct path to getting us there. It was my first trip out into the world since coming home from the hospital and while I’ve been ramping up my activity, it was representing some exertion. The walk from the garage to the clinic, while finally enclosed (all last year, it was out in the open) is a trek, comprising a very long corridor that goes by a pretty enclosed courtyard (nice landscaping), the new breast cancer clinic, the pharmacy, some on-going construction, etc. It’s been a common question for the nurses/health techs to ask if you’ve taken the 10-mile hike (from the south garage) or the 20-mile hike (north garage), when they’re doing the initial vitals and pulse/blood pressure are elevated.

As we drove by the entrance to the valet parking, I made a small gesture. Clearly, it hadn’t entered his consciousness at any level. I pointed out the length of the walk. He pointed out how long it would take to get the car back (probably) when we were done, and how tired I might be by then and how pleased to be able just to get in the car and get home. We discussed saving services for people who are really sick and need them, as opposed to people whose recoveries are stellar and improving every day. I reflected on my goal of more exercise. I did actually know better than to think it would be possible for him to let someone else put the car away when he could do it his own self. Really. And, as it turned out, the walk was pleasant. The little courtyard is pretty, we had to stop at the pharmacy on the way out anyway, and the moment passed. Still, our parking ethics are different. I think my father would park in the lobby (to be efficient, you know) if it were feasible; Walkers generally park farther from the door to make sure that people who need to be close get access to the good parking places. I’ve gotten more Walker-like in this (and other ways) over the years, as I admire and think it’s the right way to go, but that efficient-and-close parking thing is deeply burned into my personality and pokes out now and then. I use this example sometimes in ethics talks, especially when met with the “how do you expect to teach grown-ups not to lie if their mothers didn’t manage it?” challenge. “Isn’t trying to teach ethics a stupid thing to do, anyway?” The parking ethic question is a lovely example of different ways of looking at the same problem that exposure to other world views can bring: submersed in the efficiency perspective, my original world-view was limited. I could and did easily grasp the point about the needs of others, and could and did adapt. A lot of the time, professional ethics are about habits of working and thinking, and those are both teachable and learnable, especially when participating as a member of a community that requires trust to function and advance, as do scholars and researchers.

The perfect record Carle employees had of deferring to patients at pinch-points was broken yesterday: for the first time across this intense two weeks or so of lots of visits, two employees we’d glimpsed out smoking as we were passing by the valet parking entrance rushed back in, clearly a little late, returning from their smoke break. Not only did they rush past us, they also streamed into the elevator in front of a lady with oxygen. From their conversation in the elevator, they seemed to be struggling with a dispute with their supervisor that is still escalating. Directly on the heels of that, we learned at some length of the woes of the person taking my vitals (who asked which length hike we’d taken) who was having a bad day. So, both dinged slightly the otherwise impressive numbers we’ve compiled. I hope there might be time this weekend for us to finish our counting report and pull out some of what we (at least) find interesting about it.

As I finish this, the sky is lightening and it looks to be another glorious autumn day in Urbana. It’s Farmer’s Market day, and later, we hope to go for a walk at Crystal Lake. The final set of student papers is well under way and I’m hopeful I’ll be able to get those done, which will leave both my classes completely caught up. That will be a good feeling! The Walker-Gunsaluses send you warm wishes for a wonderful Saturday and weekend in your lives. Hug someone close to you.

Pictures of the intruder taken September 8

These are two cross section images from the MRI Tina had 2 days before surgery. They give a pretty good idea of just how BIG this thing got before it was taken out. The top picture is a left side view, the bottom is a view from underneath, looking up, which is why the tumor appears on the right half of the frame.

Staples Out! One More Step to Recovery

The staples are out, I’m cleared to wash my hair and even to drive a car! What an amazing saga this has been. Apparently because I’ve not had any seizures or even indications of possible seizures, driving is not seen to be any sort of issue. Given that we have manual transmission cars and my right arm is still wonky, I’m not sure I’m going to rush right out and try that, but it’s one more degree of recovery and freedom. It feels pretty darn good.

We learned today that the pins-and-needles numbness is likely to be among the last of the symptoms to clear up. It’s an effect from the actual surgery. Some of the eye effects I’m having are also surgery-related, over and above the fuzzy vision and other strangenesses from the steroids. Dr. Olivero fully expects those to dissipate over time. Finally, when we asked about my reading challenges, he pointed out that the tumor was big enough that it was impinging on the reading and information-integration centers of my brain. He expects the effects I’m seeing in those areas to pass as the brain tissue shifts and re-occupies its space.

I return in three weeks for another MRI and consultation. After that, I’ll have MRIs every two months for a while, then every six months, then every year from here on out.

Before this adventure started, we’d planned to go visit Kearney and Brad in Madison this weekend, and we have two hotel nights at a nice, central hotel pre-paid for via Priceline. Does anyone out there reading this have any use for two hotel nights in Madison tonight and tomorrow night? We’d be glad to pass them along. We’ll be rescheduling our Madison visit, ourselves….

We are very grateful for the suggestions about physical therapy we’ve received. We’re back to working on that today, as some specialized therapy for the arm and leg will be useful. Meanwhile, I’m cleared to return to my strength and balance training, so we’ll restart our schedule for those and work on slowly building up over time. I’m not supposed to lift anything over 12 pounds for a while and generally to be sensible about building back up. I am truly working on my patience and my ability to receive gracefully. Growing from this experience seems like the bare minimum I ought to be able to generate.

Kearney and Shea point out that my beginner’s luck has held all through this experience. It’s an interesting observation. I do have amazing beginner’s luck, which means that I win just about any game the first time I try it. I never win again after that, just the first time. It appears that I have beginner’s luck with brain surgery, too, as otherwise how to explain the extraordinary smoothness of this entire bizarre adventure? And, how else can you explain the luck of having the perfect hair for brain surgery? We’ll take some pictures after my hair is finally clean, but our sense is that the scar just isn’t going to show at all. Truly amazing.

Michael asked for, and Dr. Olivero provided today a CD of all my brain scans. We ended up with copies of both CAT scans and both MRIs, so we are not short on pictures of my brain. Or my tumor. Michael is working on how to post his favorite tumor pictures. (Is there something oxymoronic about having “favorite tumor pictures”? I have to think about that one.)

We continue to be amazed, overwhelmed, grateful, confused, happy, and thankful beyond words. We have still a long road in front of us. We have confidence that with your companionship, friendship, love and caring, we’re going to make it. And one of these days, we’re going to have a party to end all happy parties. Thank you, friends.

Today's Real Post after Surgeon Folllow-up Visit

It's another beautiful day here. We see the surgeon for a follow-up visit at 11 and will post after that. Nothing's wrong... we're just waiting to see what the news will be.

Nights are getting better, but still sometimes not as smooth as we're aiming for. I had a burst of energy (probably nicest to call it that) around 3:00 and finally just got up and worked for a while. Ok, for three hours. I made great progress on the student papers (I could read them!) and sent a complete redraft of our counting report off to Kearney. Plus, today's questions for the surgeon are all typed out tidily. (Total overkill, as we know the questions we have.) Sleeping would have been a better choice, it just wasn't one of the options. We're frustrated with the responses we're getting trying to schedule the prescribed physical and occupational therapy, as one place won't even assess me for two more weeks and the other doesn't return our calls. I'm thinking maybe the thing to do is just to re-start my strength training and walking if the surgeon oks it.

Thursday, September 18, 2008

Three important post-scripts for Thursday

Happy birthday to my younger sister! We in Illinois send you wishes for a great day.

Our thoughts are with P in surgery today. Hope it's over soon and you're home before you know it.

Also, we thought we'd share some official news forwarded to me by a friend who has known me since I was twelve years old. We've found it most informative and helpful:

'Tina – I just checked my Brain Tumor Removal Recovery Guidelines. In the index, “Crabby” appears on pages 7, 12, 62 and 139, so I think it will reappear again. Anyway, I think on day seven you are allowed actually three minutes of being crabby, not just two."

I'll use my extra minute today right before going out to sit in the sun. Thanks again.

A Different View of the News

While current events are swirling in a gloomy way, I have a powerful sense right now of how many truly good, kind, honorable and constructive people there are out there in the world. Yesterday’s frustrations brought me feedback that was wise, loving, supportive, nice and funny. Thank you so much. On top of that, it reinforced what a powerful force for the good you are as a collective group and what a cheering thought THAT is about the state of the world when it is so easy otherwise to be overcome with gloom. I have images of you loving, strong, smart and powerful personalities each in your orbit doing your thing and moving life forward. Now there’s a nice world to think about.

All that has me reflecting on an experience we had years ago—before internet newspapers were common, even—when we were in France one summer during a stock market meltdown. Black Thursday, or something like that? Since we didn’t have any media there at all (no TV, no radio), our connection to the outside world was via the International Herald Tribune. At the time, it was a pretty short newspaper and the net effect was that although we knew they were out there, the events of moment mostly passed us by. We were as affected as was the rest of the world, but the news was so muted in our daily existence, it didn’t feel quite real. I’m in one of those time burps again now, because even though I have access to plenty of media (and isn’t electronic communication a gift in so many ways?!), everything going on in the “real world” feels somewhat removed due to my cognitive patchiness. I know significant events are unfolding out there, they just don’t carry their usual immediacy for me right now. It’s a strange feeling, as I’ve been a voracious consumer of current events, reading at least three daily newspapers front to back for decades. Since that simply isn’t in my current repertoire—although I can and do turn the pages and look at the headlines and pictures—I feel more like an observer of the world than I have in some time. Some days, it’s peaceful, and other days it’s frustrating. Today, I’m working on peaceful.

During yesterday’s frustrations, Michael (who knows me pretty well), chivvied me into putting on real clothes (a remarkably a good idea in terms of making me feel more human) and walking downstairs. It’s the first time I’ve been down there since we got home from the hospital, and it felt good to reoccupy my own house. He didn’t stop there, though: he shooshed me into the back yard, setting me up for a bit in a chair in the sunshine. It was a beautiful day, and the sun therapy was magical. I still had the same limitations and frustrations, but I was able to reset my attitude. The situation I’m in is amazing, and the reality of it is that even if I don’t much recover from this point (not expected or likely), there isn’t much of my regular life that I won’t be able to re-assume with some adjustments and compensations. In any event, we believe there’s every reason to hope and expect for big improvements from here, so that’s our course.

One especially helpful aspect of my first real moving about is that we have the calmest, happiest dogs you could ever want to see due to the company and exercise they’re getting from Wonder Friend, who has been showing up every day to run and keep them company. Yesterday, he picked them up in the morning and they hung out together for a large chunk of the day. That meant that there wasn’t any danger of these enthusiastic and loving creatures swirling around or upsetting my balance as I was working on regaining my sea legs. Knowing that they’re getting attention while we’re all so distracted has been a real gift to us. Others are offering to help, as well, so we don’t have to keep imposing on him daily, and that, too, is another of the incredible gifts of support we are receiving.

We’re set up for a follow-up visit with the surgeon on Friday, though we don’t know whether the staples will come out then or not. Aggregating our collective information, we find that we’ve heard the staples come out in “a week,” “ten days,” and “two weeks.” Thus, we’re not sure what to expect on that front. During the surgery, they did tests on frozen sections (I think) of the tumor, all of which confirmed the original thinking that it was benign. We think, though, that we were told (some of this does get fuzzy, as a lot was going on pretty quickly) was that a section would also sent out to a pathology lab in addition. We believe the results from that should be available on Friday, as well, which if we’re correct, will be the final word and close all possibilities. That will be nice. We’re in the midst of setting up all the therapy on order, and today is the first step-down of the steroid dose. I’m going to try to take a short stroll on the treadmill today as going up and down the stairs worked pretty well yesterday. Kearney and I are working on our counting results and other observations, which will come along in due course.

It looks like another glorious day here, so backyard, here I come this afternoon. I hope each of you knows how much your support means. I feel limited in my ability to express how powerful a healing force it is for me. It truly is sustaining all of us and we thank you so very much for all you’re doing for us.

Wednesday, September 17, 2008

One-week mark and Crabby

Could I just indulge myself and complain for a moment or two if I get over it really quickly? I am working at being graceful about how helpless I feel in so many ways, but is it still OK to hate it? I do fully understand that, one week ago today, I was coming out of anesthesia for major brain surgery. I have nothing to complain about. Still, given my druthers, I like to be the one helping people, not the other way around. And so many people with lots on their own plates are distorting their lives for me. (Please, let me also acknowledge they are doing it happily and sweetly and lovingly and I really, really appreciate everything everyone is doing. People could not be kinder or nicer than they are being. We are so fortunate to know so many truly fine human beings. It’s humbling, actually.) Since this looks like it's going to be a long slog, the sooner I get graceful about this, the better off we're all going to be. I get this. Really, I'm trying to be diligent about it. I am not afraid of hard work, and I suppose in my puritan soul I think that if I hate the task, it’s all the better for me, so at least this situation has virtue on its side. Now, back to our regularly scheduled plans to heal and recover. I’m certain this moment calls for the powerful chocolate sauce waiting in the refrigerator. Thanks for listening.