ridin' the rollercoaster with laura part 2

Part 2:

I'm writing this on Sat. 12/15. [added more on Sunday and Monday]
General comment: One of the more difficult things to deal with all along since the first surgery has been L's short-term memory loss and extreme ADD-type thinking. She has passed a high percentage of the time sitting back, eyes closed, a kind of dreamy half smile on her face, aware of what she hears and able to nod appropriately, but somewhere waaaaay out in space, as though she hadn't slept in 48 hours or had just smoked 4 joints. She frequently emits little moans or grunts, which might mean ouch! or pleasure, or insight [aha] or complaint or all of the above or God only knows what; I sure can't tell. And later, when she is more present, she can't remember being in that state or what the sounds meant. At least then she is able to have some kind of conversation, but usually can't sustain it very long. This whole thing is frustrating, annoying, downright painful. I have been waking up in the middle of the night and remembering the fascinating, intelligent, articulate woman I have been living with for 31 years, missing her in the extreme, and in my worse moments, being afraid she won't come back.

The doctors have tested various possible causes and have narrowed them down to probable reaction to one of her drugs, dilantin. This is now gradually being replaced with a substitute, and indeed today has been the best yet in terms of alertness, energy, ability to express herself. This is wonderful to behold, but I can't help listening for the other shoe to drop. [Sunday she is even better, lots more energy, more relating, more initiating conversation.]

So, back to the story: When we last left our heroes on Thurs 12/6 in Santa Fe, they were sleeping tied together to prevent unauthorized wandering in the night. This plan worked fine, the only problem, for yours truly being that L would do her business on the toilet just fine, and then space out and just sit there; I would say, OK, honey, let's get up and go back to bed. She would nod and say OK, and then just sit there nodding and moaning, twice for a half hour[I actually timed it.] I tried everything: logic, pleading, begging, humoring, losing my temper, the silent treatment, nothing would get her to budge. I know this paints a humorous picture, but this was truly terrifying to me, I felt I was losing her forever. I broke down and wept. This also did not help. Finally I thought of turning the light on full bright. Then she got up and went back to bed.

The next few days you already know about, appts. with Dr. Ampuero, our truly beloved gyn-onc [see, i'm learning a lot of med-speak], Dr. Shina, a radiologist, our dear friend and neighbor Dr. Howard Gabor [at night when we were freaked out at Laura's spaced-out-ness, he reassured us it was normal for the situation]; much support, visits, food, prayers from our dear, great friend network; lots more ups, downs, middles;
CT, PET; an uneventful flight to SFO[ another fear had been that the pressure changes might make problems]. We were installed in Andra and Bill's home in Berkeley [Andra and Laura have been friends since Age 8, and Andra made the original connection between Laura and me], met Dr. Parsa on Thursday, had another MRI, and were admitted to UCSF Monday morning 12/10.

One thing that was especially moving and helpful to me was that my daughter Justine flew down from Portland to be with me, Sarah, and Laura for the surgery. She was a strong, sensible presence, as has Sarah, Laurie, and Andra throughout. During the surgery, Justine and I walked in the neighborhood, ate a meal, and were sitting outside a coffeehouse, about to return to the waiting room, when Sarah called and said Dr. Parsa had told her about the success of the surgery and that they had gotten it all out! I had been fairly confident all along that the risks were low, probability of success high, but yet I had been harboring a dread and a fear somewhere in my gut that the result might be otherwise, not particularly that she would die on the table, tho that could happen, but that there might be some kind of major deficit, that neither Laura nor I would ever be the same again. When the call came from Sarah, I experienced a gigantic wave of relief, of gratitude, of letting go of tension, such as I have never felt before. It must be like those huge waves I have been hearing about at Maverick, a surfing spot near here. I hugged Justine, wept a little, sat there taking in the reality, the enormity. I truly relaxed for the first time in two weeks. It was awesome!

Monday: I think I'll just send this out now, since my writing process is so slow, more later.
But a quick update: L was moved to a regular room on Friday, much more comfortable, no room mate with her TV, visitors, loud phone style. This morning L is about like yesterday, as reported above. We are hoping to find out more today about discharge, and how long we will have to stay in sfo. We will be staying at Sarah's house.

Love,
Bill