Saturday, July 4, 2009
Friday, July 3, 2009
It's already July 4 in Korea, so to my Yank friends there I say: HAPPY FOURTH! Long may you kill, grill, and eat your fill!
To fellow American readers here Stateside: HAPPY FOURTH IN ADVANCE! It's likely we'll be motorvating out to Maryland tomorrow morning; one of Mom's friends has a beach house in Lusby. The fresh air, good conversation, and companionship will likely do Mom some good.
What a windfall: two loads of dinner came today courtesy of (1) Melinda Mason from church and (2) Mom's good friend Cheong Burns. Thank you both! We're now set for several meals, and I can cater to both Western and Korean tastes without having to do much prep at all.
Cooking in my household can be an exercise in diversity awareness. Mom's tastes have been changing, but she still strongly prefers Korean food; Dad doesn't eat spicy food, and often prefers good ol' Amurrican food, i.e., the bland-but-delicious fare you can get at a diner. I'm the closest thing to an omnivore in the house, and even I have my hangups: I dislike large-cut onions in most non-Korean dishes (in Korean soups and stews, the onions are generally cooked until their flavors have emptied into the surrounding liquid), and am not a fan of coffee and coconut. When David comes over, I have to remember to avoid tomatoes and most seafood; when Sean is here, dinner needs to be Atkins-friendly, which means prepping something devoid of carbs.
I've found that it's often easier to prepare separate dishes-- mini-lunches and dinners-- than to force everyone to eat the same thing. When I make my spicy cucumber slaw, for example, I know that it's pretty much for Mom and me: Dad won't take the spice, and the sugar content, though small, makes it inedible for Sean. David's not around often enough for dinner to have tried it too many times. If I make sandwiches, I know they're primarily for Dad and me: Mom prefers food with some actual pep to it, and unless I start buying spicier ingredients to "go all Bobby Flay" with my sandwiches, Mom won't touch them. But simultaneously making smaller quantities of each food, though a challenge, seems to be the way to go, and it's good training for yours truly, because the different dishes often require disparate techniques in their preparation.
Such is life.
Thursday, July 2, 2009
Dr. Yoho thinks Mom simply needs to finish her dapto regimen. As far as he's concerned, there's no problem with her beginning in-tandem therapy while she finishes the antibiotics. In other words, he's given her about as clean a bill of health as can be expected. Mom's head and leg wounds seem fine to him, though he clucked a bit over the continued bleeding from Mom's leg wound and asked us when our next appointment with the plastic surgeon would be.
1. Restart chemo- and radiotherapy on Monday.
2. Call Dr. Mirali's office (he's the plastic surgeon) and set an appointment with him or with one of his colleagues for sometime soon, just to allay any fears that Dr. Yoho might have (the doc didn't voice anything explicit, but his question about the plastic surgeon was a red flag).
3. Make sure the home care nurses (and the Inova health system) closely monitor Mom's blood count during the 6-week blitz.
4. Start thinking about when Mom should have another MRI done.
5. Put together info packets for MD Anderson and NCI to keep them up to date as to Mom's condition and where she is in her treatment schedule.
6. Contact Dr. Leiphart and/or Dr. Tonnesen about Mom's bone flap. Dr. Yoho felt that she was ready to have the synthetic bone put in soon, but my gut tells me that it would be better for her to do this after the six-week phase is over. The problem is, as always, that Mom is going to be extremely susceptible to infection during this period. Cutting into her scalp sooner, rather than later, strikes me as risky; the timing is awful. The flip side, though, is that Mom's level of immunosuppression might actually be lower at the end of the six-week session, making bone flap replacement inadvisable at that time. Dr. Yoho seems to think that immunosuppression won't be a huge issue if the replacement is done sooner. In any case, we're going to consult with other doctors before anyone cuts Mom's head open a fifth time.
We're off to visit Dr. Yoho, the infectious disease specialist, today. The appointment is at 1PM, so we're leaving around noon. This is an important appointment, as Dr. Yoho is the one to determine whether Mom is truly ready to restart chemo- and radiotherapy. Mom is scheduled to restart these things on Monday, July 6th, but this is changeable pending Dr. Yoho's verdict.
Assuming we get the all-clear, life will once again be about taking Mom to the hospital five days a week for six weeks. Chemotherapy will be seven days a week during that same period. I have no idea whether Mom will be continuing her antibiotic regimen while she's also undergoing in-tandem therapy; up to now, my impression has been that the daptomycin has to stop before therapy can begin. This puts Mom back in a delicate position, as the in-tandem therapy will lower Mom's blood count and generally make her more vulnerable to infection. Let's hope she'll be able to make it through six weeks without acquiring a major infection.
More on today's appointment later.
Wednesday, July 1, 2009
My dad spoke with a friend in Hawaii who directed him to a site about a form of treatment called GEMM therapy, which is supposedly applicable to a variety of degenerative disorders as well as different cancers, including glioblastoma multiforme (GBM), my mother's cancer.
Skeptic that I am, I'm looking for information about the disadvantages of this treatment method to balance out what the GEMM therapy website has to say. A quick Google search shows that it's hard to find any naysayers, which automatically makes me suspicious. Any treatment touted as a flawless miracle is probably not flawless.
A search at WebMD.com produced zero results for the search string "GEMM therapy."
UPDATE, 3:49PM: A link from Alan Cook that debunks GEMM therapy.
Tuesday, June 30, 2009
Mom can no longer follow a movie's plot the way she used to; this is one of the effects of damage to the left frontal lobe. She tends to be more tactile now, fascinated by the heft and texture of things, but when it comes to watching a story unfold, she's more responsive to the emotional dimension of the story at any given moment than she is to the story's more abstract issues-- its themes, for example, or its sly references to other stories on film or in print. The plot might build up to a crescendo, but Mom can no longer appreciate the buildup, as she can't retain the sequence of events that give the crescendo its impact.
It was, therefore, a bittersweet experience to witness Mom watching "The Incredibles," my favorite Pixar film. She was already a bit sleepy before I started the DVD, and she drifted in and out a few times over the course of the movie. Some events startled her, mainly because she'd forgotten why the event was going to occur. Because of her blunted affect, i.e., her reduced ability to feel emotions, a lot of the humor was lost on her, too. Nevertheless, while Mom was awake and watching, she seemed, on some level, engaged with the proceedings, often staring at the TV in almost childlike wonder.
It's too bad Mom's no longer able to have a discussion about anything; it would have been interesting to compare this American-style portrayal of family life with a hypothetical version of "The Incredibles" made by Korean scriptwriters and filmmakers. I asked Mom a simpler question instead: "Who was your favorite character?" Mom couldn't say. As with so many yes/no and "Wh-" questions, she started her response with "Well..." then faded into silence.
Sometimes I think it would have been nice to have more video of Mom from before all this happened. Now, sadly, I know that from here on in, such videos won't be possible. This is the Mom we have, and barring a miraculous recovery in her brain, this is the Mom we're going to have. Such a Mom has her merits-- in her reduced state, she seems more at peace with herself, for example-- but counting one's blessings in such a situation is a bit like losing nine fingers and being thankful for having retained the tenth.
Still, it's important to remember that regret and vain wishfulness serve no constructive purpose. Mom-- this Mom-- is here with us now, and she still loves us, just as we love her. That's what matters, because that's all that can matter.
We continue to worry about Mom's lessening verbosity. We're not sure what to make of it; today's home care nurse apparently did neuro checks ("What's your name? What day is today? Where are you? Follow my fingers with your eyes," etc.) and came away wishing that Mom had done a better job with them.
Mom had suffered another skin rash for a bit, but today it seems to have gone away. She doesn't show signs of any further wound-related infection, as far as we can see. If something's going on in her head, it's most likely a function of the tumor's activity.
Externally, what we see is that she's less verbal. For all we know, Mom is quieter for internal, mental reasons. Dad wondered, yesterday, whether Mom has gotten sick of us asking her with our own neuro-check questions, but in truth, we haven't been questioning her much. My brother David just texted a few minutes ago to suggest Mom might simply be bored. She still presents as aphasic and shows continued signs of perseveration (previously mentioned here), but she watches TV, walks around, does puzzles when she's sitting in the bathroom, and is otherwise about as functional as we can expect of her.
I have no idea what's happening. Perhaps we're just reading too much into her current quietude.
Monday, June 29, 2009
We're going to be visited in a few minutes by members of the church who will be measuring out the space in which the wheelchair ramp will be placed. It seems strange to talk about such a ramp when Mom is doing so well with walking, but it's important to realize that we're seeing only the upward side of the rocket's trajectory: eventually, there will be a decline, a return to earth, and the ramp-- along with the wheelchairs (we have two now)-- will make more sense.
It's my understanding that we have a timeline for ramp construction: July 11, which is either a start date or a start-and-completion date. As always, we're thankful for the enormous amount of help and love we've received. Dad noted with astonishment that this ramp is going to cost us nothing, which is nothing short of amazing.
On a related note: thanks, as well, to Mom's friend Mrs. Kopf, who helped obtain the second wheelchair that now sits in our dining room.
Dinner was generally a hit tonight. Mom liked the taste of the chicken, but didn't go for the peanut sauce, which is too bad, because that sauce was a labor of love. She and David ate all of the Korean-style pickle salad I served (my take on Korean oi-kimchi); David and Dad ate all the chicken they were served (alas, Dad also seemed to avoid the peanut sauce), and everyone enjoyed the dessert, which was a lame-looking but tasty riff off tiramisu: sponge cake soaked in cream and alternately layered with chocolate mousse, the whole thing dusted up top with a cherry-chocolate powder-- the latter being from that lovely NALC gift pack we'd received a few weeks ago. The dessert looked rough and was closer to a parfait than to a true tiramisu, but it tasted mighty fine.
In other news, Mom seems less verbal these days, a fact that's worrying Sean. I don't see an obvious problem right now; Mom hasn't taken the initiative in most conversations since this whole mess began. Some level of passivity is therefore expected. But because Sean seems to be picking up on a potential problem, I'll be more mindful of how Mom is over the next few days. A constant worry for me is the return of the tumor. As you'll recall, the only thing that's been done to the tumor, thus far, has been the debulking on April 21; the two days of chemo and radiotherapy hardly count. While the docs assure us that regrowth isn't likely for months, I remain nervous about the sheer length of time that has passed since the debulking operation.
As always, a lot to think about. Meantime, it's enough for me to plan the next meal. As the English-language sign inside Hwagye-sa, a famous Zen temple in downtown Seoul, says: "All 24 hours of the day, don't make anything." It suffices to keep one's mind in the present without carving the world up into this and that and what if and what next. In making mental boundaries, we often end up creating more stress than we might be alleviating. Of the many boundaries we create and maintain, the biggest and most pernicious one is ego: the sense of me as opposed to everything else. As much as I hate Mom's cancer, that hatred doesn't really help matters: it's just a function of ego. The question before us at every moment is, as the Zen masters routinely ask, "What are you doing now?"
Echoes of this can be found in Christian thought. I'm wary of books that turn Jesus into a Zen master; original Buddhism is roughly a half-millennium older than Jesus, and Ch'an Buddhism comes into the picture about a half-millennium after Jesus, which excludes Christ from the Zen dharma lineage. Nevertheless, if the scriptures can be trusted, Jesus did say things like, "Let the dead bury their dead," a pronouncement that any Zennist would appreciate because it cuts off attachment to the past. He also said, by way of cutting off attachment to the future: "Consider the lilies of the field, how they grow-- they neither toil nor spin. Yet I tell you that Solomon in all his glory was not clothed as one of these." Sometimes the un-self-conscious act of living, of just being present, is far superior to our normal mode of self-conscious, divided-mind conduct. This isn't to say that toiling and spinning don't have their place-- they obviously do-- but it does mean that all that we do requires our full presence in this moment. Even consideration of the future must be done with this in mind. What else is there but the present, after all? The past is gone; the future isn't here. All we have is now.
So: what are you doing now? Now, I'm typing. The keyboard is black. Click-click-click at 50-60 words a minute. And what about Mom's cancer? I suppose it's busy cancer-ing. And we-- Dad and I, and David and Sean? We're here to respond to it in whatever way the moment calls for. One step at a time. Right now, that response is: click-click-click.
Sunday, June 28, 2009
Dinner tonight promises to be a chicken satay with peanut sauce, rice, Korean-style cucumber salad, and Western-style tomato salad. I might also make some more "adult" fruit salad (i.e., fruit salad that makes use of some leftover alcohol... we're not a drinking family, so we have gift bottles all over the house and in our fridges).
It's been a quiet day, with Mom favoring her leg as much as possible. We're letting her do whatever she feels is necessary to avoid pain, because in her case, pain avoidance coincides with proper healing of the harvest site. She's watching Korean TV, occasionally nibbling at lunch, and sipping at her various drinks. I'd almost say she's living the high life... were it not for all the other problems.
I'll be leading her physical therapy again later today. Leg lifts! Knee raises! Work those calves!