Tuesday, June 16, 2009

dressing

We're home barely an hour, and Mom has already stripped off the protective dressing from the back of her left thigh, exposing the glistening rectangle of skin from which the graft had been harvested. Yes, I said "skin" and not "flesh": her leg doesn't look nearly as bad as we had thought it would. Somehow, in my Stephen King-fueled imagination, I saw that wound as a horror of exposed muscle. It wasn't. The layer of skin that got stripped off was very, very thin, and the raw rectangle on Mom's leg, while vulnerable to infection, isn't a bloody mess by any means. We can all relax about that, at least.

Sean and I went through the laborious procedure of re-dressing the site, during which time Mom had to lie on her side in bed. Mom got fully into bed when we finished, and talked with Sean. The fact that she's able to have mini-conversations now is heartening.

SEAN: Mom, you didn't even say hi to me when I came by today!

MOM (giving Sean her sincerest doe eyes): I was gone!

Indeed, Mom had been asleep while Sean was at her side, and Mom's "I was gone" indicated that she had figured this out.

None of this is to say that Mom is chatting away fluently. Her ability to converse comes and goes; we're still dealing with cognitive and memory impairment (she temporarily forgot that Dad had been with her all day today), and probably will be for the long term. Any improvement, however ephemeral, is something to hail.

In other news: while Mom was asleep, Dr. Wolk's proxy came by and told us that now would be a good time to begin facing the grim realities of Mom's GBM prognosis-- to be thinking about and discussing whether we want the professionals to use "heroic measures" should Mom suffer heart failure or other extreme problems during the end stage of her cancer. Infection, the doc said, is the way that most GBM patients die. The doc also gently suggested that Mom needed to be involved in this discussion while she was still in possession of some measure of her mental faculties. I agreed, but with a heavy heart: it's still not obvious to me that Mom fully understands her own situation.

Dad, ever hopeful, brought up the patient in the room next door-- a wife who is five years past a GBM diagnosis. Dad had spent time talking with the woman's husband outside in the hallway, and I suspect he's latching on to whatever silver lining he can find.

But the brute reality is this: our hopes are bounded by the statistical and biological realities of Mom's situation. The woman next door is in the lucky 4% who survive 5 years or more beyond their diagnosis. It's perfectly rational to hope for my own mother to be in that select group as well, especially at this early stage, but it's not rational to avoid planning for probable outcomes. A great deal of human misery results from a refusal to face things as they are; we, as a family, all need to be on board about what the future likely holds for us. Whatever hope we may each hold must be leavened with pragmatism, and that would be true even if cancer weren't in the picture.

But this isn't to say we should be joyless and mopey. If anything, Mom's prognosis highlights the fact that life is a gossamer, fleeting thing, and that as a result, every moment counts, and every second is maximally precious. So each time Mom smiles is a treasure. Each step she takes on her own is a gift. Each remembered event, each laugh, each successfully navigated conversation, is a benison, another memory to treasure.

Mom is alive. We have her now. But we can't hold on to her, any more than we can hold on to anyone or anything else. Jae beop gong sang: all phenomena have the character of emptiness. All things are here, and all things are passing. Accepting this is important-- not to deny or suppress the grief to come, but to make it easier to handle, and to return us always to a proper experience of this moment.


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3 comments:

Horace Jeffery Hodges said...

I've only now begun to understand how serious this is, for I've just looked up GBM. Your family will definitely be in my thoughts and prayers, Kevin.

Jeffery Hodges

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Kevin said...

Thanks, Jeff. I know I've written about the survival stats, etc. before (here and here, for example), but it does take a while for this sort of thing to sink in-- even for those of us at the quake's epicenter.

I'm happy to say that I'm perfectly reconciled with the prospect of my own death, but it's not so easy to say the same thing about those I love.


Kevin

imp said...

Sometimes, Kevin, you write things of such beauty that I wonder how those stunningly lovely synaptic firings can coexist in the same brain that wrote the book that lives on the back of my toilet.

This entry is beautiful. That is all.