Friday, November 21, 2008

Looking Back, Turning Forward

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

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

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

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

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

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

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