Monday, August 10, 2009

the latter half of the day
(plus remarks on some conversations)

I didn't go with Mom and Dad to Mrs. Harding's house, but I understand that the parents spent a pleasant evening there. My thanks go out to Mrs. Harding and her husband Ron for their hospitality: they not only hosted my parents, but also sent back a bunch of leftovers. The chicken, shrimp, and fried kale were all quite delicious.

My own evening was spent doing two things. One was ordering some new pants from the online REI store-- didn't have to pay anything for them, thanks to the credit reserve I had built up from my massive purchases last year (REI gives you back 10% of your purchase as credit to defray the cost of future purchases).

The other thing I did was go out to the local Toys R Us. I spent well over an hour wandering the store, looking for items that might appeal to Mom. Eventually, I settled on two Rubik's items: the Rubik's cube, and a flat Rubik's puzzle that folds in crazy directions. The second puzzle has patterns on its surface; different folding sequences produce different images, and the challenge is to see whether one can reproduce certain set images. I also got Mom a doodling book-- one of those "finish the picture" exercises wherein the doodler can use her imagination to fill in major content and details (e.g., "What would you put in this picnic basket?"). Mom's been doodling a lot lately, so this seemed like the logical thing to purchase. Alas, I didn't find a snake puzzle, and will need to hit the bookstore if I want to purchase a "word find" book for Mom.

I also took a bit of a risk and bought Mom some Play-Doh. Actually, I purchased two small cans; this way, Mom and I can work separately yet together, perhaps inspiring each other to create something the world has never seen before-- mutant ddeokbokgi or some such.

Earlier in the day, Mom saw Dr. Benson, the neurologist. He was pleased with her improvement, overall. I asked him about how to deal with Mom's perseveration-- specifically, her tendency to fixate on cleaning things. I told him what I have been doing, i.e., prying her away from her activities by taking her hands or wrists and gently tugging her until she snaps out of it and moves with me to some other place. Dr. Benson thought this sort of treatment was fine, as long as we don't force sudden transitions on Mom, especially now that she's showing more volition.

Mom and Dad got back home from their time with Mrs. Harding before I got home from the toy store. They're both watching a subtitled Korean drama-- a repeat of an "ER"-style doctor drama that apparently came out last year. The story is often inadvertently hilarious, not because of the implausibilities (American medical dramas have their share of ridiculous moments), but because of the accidental commentary that the drama offers about Korean medical professionals. Suffice it to say that, if Korean hospitals are run as poorly as the one portrayed in this drama (which has the English title "New Heart"-- and yeah, I thought of Bob Newhart, too), there's no way I'll be stepping into one if something goes wrong.*

Speaking of medical professionals-- I mentioned in my previous post that my conversation with Dr. Tonnesen was both enlightening and frustrating. The problem I had was with Dr. Tonnesen's response to a question about Mom's tumor growth as shown on the MRI. The doctor observed that, in general, no one bothers with such scans during the main treatment period. The MRI scan that was performed not long ago at Fairfax MRI Center was, according to Dr. Tonnesen, one that wouldn't normally be done. When I mentioned to the doctor that the MRI report noted both the tumor's progress and the presence of necrotic tissue, Dr. Tonnesen said I was reading the report and drawing conclusions from it. This incensed me: I had wanted to ask him about what was going on, not imply that I knew better than the doctors, or that I was qualified to interpret the data. I sensed a bit of defensiveness on his part, and to be honest, I thought his response was out of line. He's a good, well-intended fellow, but I think we, the family, deserve better than condescension.

Anyway, the upshot of the conversation was that, during the eight weeks that Mom was being treated for infection, nothing more could have been done for her: the docs were, at the time, worried about whether she would even live through that phase of her illness. As he had said in a previous consultation, Dr. Tonnesen felt it was more important to look at how Mom is doing clinically, externally, than to focus on what might be happening inside her head. He called this a "pragmatic" point of view-- many patients with various types of brain damage can attain, each through his or her own individual means, a measure of functionality. In other words, internal damage isn't always a predictor of what one actually sees in terms of behavior, memory, etc. Functions (such as speech) have centers in the brain, but are also distributed throughout the brain like a network; the brain can often circumvent damage by finding other plausible neural pathways. It's therefore more useful to focus on what one can actually see.

I thought the doctor had made a valid point, but I countered that there is another form of pragmatism, this time from the caregiver's point of view: knowing what's going on in Mom's head can help us anticipate her future needs. If we know, for example, that Mom's speech centers will soon be affected by the tumor, then we can begin to prepare for this eventuality. Far better to manage affairs this way than to ignore or dismiss MRI scans, only to have a problem suddenly appear-- one we could have anticipated. Dr. Tonnesen said that it would be better to address such questions to Dr. Leiphart, and in truth, it was Leiphart who originally gave us a long spiel about the properties of the frontal lobe.

Dr. Tonnesen also promised to look over the recent MRI report (he's had it since at least July 21!), and to talk more with us on Thursday, which is our normal day to see him. Meanwhile, I've asked Dad to call MD Anderson to see whether their own treatment protocol includes not scanning patients during the initial six-week in-tandem therapy period.

*For the American equivalent, imagine being treated at the hospital in "Scrubs." The difference is that "Scrubs" is supposed to be a comedy. I think everyone's dream hospital would be the one portrayed in "ER," in which infighting is put aside so that everyone can work for the benefit of the patient (my commentary on "ER" here and here).


1 comment:

Anne said...

Kevin, I'm late late late catching up on all this horror. Thoughts go out to you and your Mom and family. I've read through to today, but am writing here where it seems most relevant.

I've no idea if this would help, but my bro-in-law (a stroke victim) got a lot of satisfaction from messing around with a soft spiky ball:

You squidge it, and it bloops; you can dangle it by a tentacle, or throw it across the room.

Kudos to you for your honesty and strength. You seem to be making the most of the time that's left. People avoid talking about end days but it's important, and important to your Mom too. I wish you all love and peace.