Tuesday, September 9, 2008

Monday's report (Sept 8)

The people are winning and the tumor is losing.

First, the tumor's score: energy levels (low), coherence (declining), balance (bad), uncertainty (wearing), headache (constant) etc. It's clearly past time for this unwanted and uninvited interloper to be gone. As the symptoms continue to accelerate, we're all glad to be approaching Wednesday, even if sometimes the time seems to be dragging and other times it's accelerating in uncomfortable ways. Please note that we're being very fair and not attributing the insomnia to the tumor, as that's pretty clearly just generalized anxiety and not a physical manifestation.

The people, though, are without question winning. West-Coast yesterday said "People like us whose identities come from being smart ought to get tumors on our toes, or something." We're all still smiling about that.

There's lots to smile about: the constant stream of positive thoughts and gestures, the generosity of the people covering my classes to the grace of the students in dealing with strangers parachuting into their just-started classes, the task-oriented friends who jumped in to needed items--like the keynote speech for a local conference I was to give on Sunday afternoon and could not, that got covered on 24-hours notice, the thoughtfulness all around for softening the edges of this experience from deeply expert medical advice to hospital garb to chocolate to diversions to positive outcome stories. People are giving of themselves. We're struck by how much they are each giving from their strengths in ways that buttress our weaknesses right now. How lucky are we to have lives full of so many truly fine people.

Meanwhile, we completed a bunch of the necessary nuts-n-bolts stuff today, including insurance clearance, hospital registration, baseline MRI, etc. Most of the MRI process was fine, with lots of thoughtful aspects from the clear explanations/directions and warnings to the washcloth over the eyes to reduce the visual effects (the big sky/cloud picture on the ceiling outside the machine was nice, too). Only the last seven or eight minutes of the 40-minute experience were hard, with the volume and vibration finally leaving me quite anxious. Tomorrow brings the pre-op physical, meeting with the anesthesiologist and lab tests. On the list of tomorrow's questions are whether there's a way to combat the left-over MRI anxiety/blood pressure-pulse acceleration as I go into Wednesday's surgery-prep MRI for the "stealth" images. For those interested in that sort of thing, there are some interesting pictures posted of a craniotomy (the operation I'm having) to remove a meningioma (though in a different place than mine and smaller in total) from 2005 posted at http://www.flickr.com/photos/woodcreeper/sets/598206/

In the vein of "certainly not essential, but grabbing a thought here and there nonetheless," our surgeon says he only shaves the incision, not the full head. Valiantly, Richard-haircutter fit us in on Saturday and crafted a haircut that leaves the top long and sides short, in the hopes that there will be a covering-over effect later from my curly hair. Generously, he is standing by to come back and mess with it when we know more about where the actual incision is, how big and how wide. We understand (more to come in Tuesday's pre-op meetings) that the scalp is sort of peeled back and then rolled back out (like sod?), hair and all after all the inside nipping-and-tucking and restoration of skull is done. No clue if our current approach is anywhere near plausible, but like so many other things, we can choose to be curious and interested or fretted, and we're going with "let's see!"

We continue to be impressed by the quality of the humanity we encounter at the clinic and hospital. Here's a tiny indicator: in all our many comings and goings from the parking garage and moving around inside the clinic/hospital complex, every single Carle staff member defers to patients by holding doors and standing back at pinch-points and elevators. We're guessing it has to be a point in training and the utter consistency of it is pretty impressive. Growing out of those observations, Kearney and I decided to institute a project to help us feel in like we're acting as much as being acted upon in this situation. We're going to start a running log, consistent with Atul Gawande's admonition to "count things" in his book “Better”. (Short version: he has an epilogue to doctors for how to become "positive deviants," suggestions for making a worthy difference in the world. He says "if you count something you find interesting, you will learn something interesting." Seems persuasive to us, not to mention the lovely distraction.) We started our log today, and are going to print up a grid to tape to the back of our hospital notebook, for easy access, that records:

1) does each person introduce him or herself to us?
2) does each put on clean gloves and/or wash hands?
3) how much real listening to us took place in the interaction?
4) how clear were the instructions and communications?
5) how helpful were they, given where we were at the moment and the current goal was?

We'll probably use a 5-point scale just to keep track and put some discipline in our efforts. We figure this will give us a diversion, some insights and a more grounded sense than our impressions that are buffeted by the surreal circumstances. There's so much uncertainty and unknown, which is, of course, for us control-oriented folks, part of the cost, isn't it? Since it's not research, not funded and not designed to contribute to generalized knowledge, and simply a way for us to organize our deeply personal experience.... well, those of you who have been following the IRB study group saga will get the point. Plus, it dovetails with the medical communication training our Art of Medical Communication group has been working on, so it has some nice synchronicities. We started our tally today and it's already growing in an interesting way. We'll report on it as we go along--if we find that it's sustainable as we envision it. Otherwise, we'll just pretend it never happened and quietly drop it by the wayside.

With echoes of that long-ago refrain by Dr. Donnie (Don Bitzer to the non-PLATO folks out there) in some other trying times, we just all say to ourselves, "we'll know more next week." It will be good to get through the uncertainty and be able to concentrate on the real stuff, including challenges we can meet head on. Stay tuned, and thank you for your caring, positive thinking and for being our friends.


  1. Just learned of this after receiving an auto response from your email. I will be sending all of my positive thoughts your way.

    Stephanie Seiler

  2. Much love to you....
    You are in my thoughts and prayers. They are for courage and strength, healing, hope, and peace.

  3. Tina
    Figures you would be giving us all such a lively and funny blog that is "totally Tina" and makes me grin, especially at the "research" you and Kearney are doing. I see a paper there, or at least a presentation!

    I logged on to send some message to make you grin and instead I got entertained! Anyway, this is just me saying you are in my thoughts and that I will be sending every positive vibe in my power to you tomorrow. (Wed)


  4. Nothing could stand against the fierce torrent of postive thoughts, visualizations, cajun voodoo, prayers and best wishes of the army of people who love you. That damn tumor is "whupped", as we say way down here in Allybamar.