Friday, April 24, 2009

homecoming and other matters

As I mentioned in the previous blog entry, there's a good chance that Mom will be coming home this weekend. We don't have official word on whether Saturday will be the day, or Sunday, or whether the original prediction was wrong and Mom will have to stay in hospital until next week. My brother Sean says that he's heard that Saturday is Mom's likely departure day, but I'm not sure this is canon.

We'll all be glad to have Mom back home. She's been away since last Thursday morning, April 16th-- more than a week. It appears that she'll be declared OK in terms of any MRSA-related protocol (i.e., we won't need to gown up once she's home), though people who visit Mom at home should probably exercise some caution. We're constantly reminded of the importance of infection control these days, especially with the recent news about that swine flu.

Mom will have about a week and a half to rest and heal. As part of that healing, she'll have those mean-looking staples removed from her scalp (and, I presume, her skull, a bit like in this photo) sometime next week; it's an in-office procedure.

After that, Mom's therapy begins. Her release from the hospital will be accompanied by a good bit of instructional paperwork relating to her post-hospitalization care: what medicines to take, what exercises to do, what infection control precautions to follow, how to bathe, etc. On May 11, Mom and the rest of us will be at the hospital for her first major appointment with the radiologist who will be supervising the radiotherapeutic aspect of her treatment. He will discuss the therapy's ins and outs, its benefits and side effects. On May 14, our family will meet with Dr. Meister, the man who broke the news about Mom's prognosis. It turns out that Dr. Meister deals with the chemotherapeutic side of treatment; he and the radiotherapist have worked together for years.

My brother David will doubtless want to bring up, during these conversations, a new treatment that he discovered while doing an online search for the latest news about treatments for brain tumors. You can read about 2.5-dimethyl-celecoxib, also known as DMC, here. As a family, we've already agreed that Mom will go wherever the best treatment is available (my Texan relatives suggest a facility in Houston). DMC isn't FDA-approved, but it's possible that we could set Mom up to participate in trials (read more about DMC here). David is right to be pursuing these avenues; I admire his determination.

In other news: Mom can walk around on her own, as she demonstrated several times on Friday afternoon, but she still has balance issues and will need constant watching. When Mom comes home, the simplest solution for us, at this point, will be to forbid her from going downstairs-- a place she doesn't visit much, anyway, because its messiness has always depressed her. (I'm using "depressed" more in a metaphorical sense than a literal one. Of course she's ventured downstairs on many occasions, but because the upstairs received a more extensive renovation, she prefers to remain there, among all that beauty. Who can blame her?)

Mom's memory has greatly improved, but it has holes. She doesn't properly recall certain recent events or doctors she has recently met, and she has completely misremembered other events; but her older memories, the ones that span years and not merely weeks or months, remain largely intact. She volunteers more in conversation, and when Mrs. Lindow visited on Friday afternoon, she remarked that Mom seemed "100% better" than she had been on Wednesday, when she was still groggy after Tuesday's operation. While Mom still doesn't seem fully emotionally engaged, she now laughs more freely and heartily than she did last week, as if the mirth of her interlocutors were truly resonating within her. She follows conversations not so much by tracking their intellectual content as by attending to their emotional flow. Her affective capacity seems to be returning.

Improvement, deterioration, disability, recovery-- it's a lot of data for those of us around Mom to absorb. Dr. Meister had told me that Mom "will never be tumor-free," which is about as depressing as things can get. Yet I'm witnessing Mom's slow rebirth after whatever horrifying system crash had taken place last week. Squaring my present observations with the professionals' dark prognostications simply produces a jumble of cognitive dissonance in my brain. Despite what I wrote in my earlier post about the need to understand reality's inevitable flow, I find myself acting like an unwilling roller coaster rider, bracing my feet in a vain effort to stop the coaster from plunging down the hill. I don't want this to be happening to Mom. I wouldn't be so exercised if I were the one with the tumor, which I'd gladly accept into my own head. I imagine that, if you asked my dad or my brothers how they felt about all this, they'd offer similar sentiments.

But that sort of self-sacrifice is just a romantic fantasy. The fact is that Mom has the tumor, not us. As always, the right conduct is just to be in the moment, to take life day by day, to "follow your situation," as they say in Korean Zen. Right now, we can be happy that Mom is improving. Right now, we can be glad that she will soon be home. These are good things, reasons for joy. And in that spirit of joy, I need to think about how I can use the next few months, or years, or however much time is left us, to make up for all the hugs I've neglected to give Mom.


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