8.17.06, Chemo, Trans., New Book, & Poem

No Franky Scale, too early, but I feel a tired 6 or 7. If things were a bit smoother, great. Chemo, the new regimen, is at 9. [Now in the afternoon of the same day, let me modify that slightly, since I have a bit of daytime experience. My nap so far was a 9, better than most sleep I've had in weeks and weeks. The overall Franky Scale (in which a "10" is best, great, a perfectly enjoyable and painfree day; since someone asked me to clarify) the FS is about 5 and half. Most of it is fatigue, add to that some distraction, then there is the actual chemo itself. Balance it with an extremely thorough and good coversation with Gillian and a surprise goo nap, so I do feel OK. Even a little appetite.

Too, I must ask, after spending 20 or 30 minutes discussing healthy eating options with my Dietician today, during the oil change, does anyone ever ask it: why do you guys really care whether I eat that healthy or not? Why not just for calories to keep some weight on but the avoiding some preservatives, etc.? I'm going to die anyway, we're on a schedule of months, what difference does it make if my tofu is just tofu or if it's hermetically or ascetically sealed tofu? (I can't remember the process she described...so. Who cares? Don't knock me, dear reader, for being cynical. This also has to to do with doctor talk since I saw Dr. Whiting today too. It's a valid question, I feel.]

The crucial importance of transparency, from that website cancerlynx.com, and from a lot of reflection, is becoming clearer to me daily. No pun intended. To the degree it is personally possible, to the degree we have the strength, it is invaluable to a person facing death. The trivia sloughs away, the small stuff, not even worth mentioning. But clarity in approach, even if awkward and fumbling, seems about as important as can be. I think it's important to share that as time progresses, as things become more difficult for some of us. A person not ready says "I'm not ready." A person who cares says "I care."

Off for the oil change.
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Back from the oil change. It was something like 8 a.m. or 7:40 before, now it's 4:20 Seattle time. Just after a long nap, but not impossibly before a long nap too. My life in chiasmus. That is the performative of poetry, let me tell you. I should get tenure points.

First, I FOUND A BOOK. You've all seen that I'm not afraid of doing the book critique; rather I think the ability to be critical is one of the only things we can attribute human "progress" to, so critique critique. (NB, it is not the same as the new Christian version of "judge judge.") If a book is bad, I'll say so. But yesterday I finally found a really, genuinely good book on the dying person's experience, about half from cancer and half from AIDS, but it's the experience of being terminally ill and what those people — like me — seem to want. It's called:

What Dying People Want: Practical Wisdom for the End of Life, by David Kuhl (published by PublicAffairs, New York, 2002; only $14.00)

I've read about 70 pages of it now and that's enough for me to say "go buy it." In fact, ALL OF MY FAMILY members, I ask you to please go buy this book, check it out from the library, steal it, whatever: I want every person in my family to read this. You ask often how you can help me, and now I'm giving a simple and direct answer. Please buy and read this book. And soon. I found myself in the first chapters thinking "Yes, that's exactly what I felt" or "thought," and at times I thought "That is really what the person who wants to help needs to hear," "This is pretty similar to my experience." You get my drift by now.

I think I want to cite certain passages from the book already, but I'll wait for now, and leave up just this short post for the next little while while I eat pizza and retouch a new prose poem that is trying to make it's way onto the blog and that deals with my cancer-death experience to some extent. I haven't written much in that vein at all yet, could be worth a read.

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Poem, a prose poem. Something else to read, from the nights I feel are often stolen from me. You can figure the rest. This began as a formalist experiment so I wonder if any prosody geeks will see.


“Nights are Stolen, Day Parts Too”

Nights are stolen, onetime copasetic slumber, still the self can be tricked into activity: a book, sketch, bath, another problem, verse, or letter somewhere else from pain, distance it far from me, something to you, so you will know before it’s already Then, of time-stopping, the slip from openended When, the red and blue capacious desert spread in gloaming, yes time of stopping, of my suffering becoming yours now. I will loan it to you, so you can number out how much you think you’ve got till your eternity, your stolen nights when night-befores were better then you’ll feel in bed the empty space, past me.

No couplets, closures, or fare thee wells to ease
the open-eyed & loose-tongued rhythms that we’ve known.

Parts of the day are stolen too and there is no slight of hand to hide how anything but transparency screams in my face, “I do not understand what this means to you. This moment, this last now?” No need to be malicious, just miniature, minute, & mote-like, and all in all a waste: What waste means to me now I can’t even begin or end to middle out. Nonplussed would imply I could explain it away with time or diction, but I am stuck facing the six-foot-two Ineffable. Waste. Sham. Agenda. Trivia. Pose. Fronting. And dis-simulation. Now fear and stuttering idiocy I welcome such awkward earnest tries, clumsy efforts to touch to feel, apologies, to just hear, and be, these all combine to map out where we both are now, not invited, no polite card in the mail, just ripped from there to here.

Clichéd perhaps but honest, due respect to a life that slips a little further every day — it is “further” you know because we are talking about quality here, quantity is no longer such an issue, anyway. We’ve all lived for granted in the honeyed shadow of surfeit, anyhow. Honesty: there is no best policy when your diagnosis, prognosis, treatment plan, back-up plan, your regimens are all one: honesty, like everything else in the list, is merely palliative. And that is all that’s real. “In one there are many kinds; In two there is no duality.” (Blue Cliff Record)

So yes, I am slower now, I sometimes saunter, I linger, and I watch, I read passages three times and write the hell out of my margins, I draw maps, I make friends wait for me but I look to check for recognition, if I eat I savor, if I can’t, I wait — means my body too has become obsessed with that old policy cliché, it doesn’t want to lie, it’s come up in the world and is now my equal, not my slave. It says “We” quite I often when I’m talking and say “I.” “We will go down” or “We are not ready” or “We’d like more sleep” or “We’d rather not.”

And in the morning it begins again, until it doesn’t.