Thursday, August 17, 2006

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 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, 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.
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.


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.


[disenchanted princess] said...


In the interest of transparency: I love you. I'm scared witless, and no, I'm not ready for this. But neither were you. I'll do it anyways, because I want to.

And, a whole day's post behind:

Write about me if you will (if it heads that direction . . .), in your memoir. I want to hear the truth . . . neither shaded and colored, nor whitewashed to protect the not so innocent. Cast me as a character in your story, and I'll suspend myself, my projection of self, to hear you out.

tossing salads said...

im with you princess. i told a good friend about the "whole truth" issue. she also agreed that you should be able to say what you will but with compassion. shes a writer so hopefully youll understand that part. i say what you will. like i said earlier im a big girl and dont mind the truth, or what your truth is. get some rest and im all over that book buying. i love you.

spacely said...

Hi spot ...spacely here. I'm sending goodies and a book your way today. Should be there tomorrow. Remember who loves you, everyone one and me too!

Slarry said...

Friday, August 18, 2006

My dearest and only brother:

It is difficult to read your feelings and thoughts on your own death and dying but the honesty and wisdom that comes with it, helps give me greater insight into your soul and what you are pondering. Your wishes and desires. Thank you for that--- I can only imagine how difficult it is, which makes me appreciate your effort and desire to “teach” us still about your journey, even more precious and priceless.

Yes, the time for small talk and misunderstandings must cease and be resolved.
There is no more time for the trivial or the senseless. This is your time-- and a time for all who care for you to step up to the plate and grant and offer you the same respect, love, honesty and strength that you so graciously and consistently offer and give to us.

I will be buying the book you recommended at 2:10 this afternoon and will also encourage the rest of our family to do the same.

I love you Scott, and I know you know that. I appreciate your patience with me. I appreciate your loving me. You are HUGE.

And to the anonymous person who wrote a comment specifically about me a day or two ago, thank you so much for your kind words and concern. I appreciate them more than you will ever know. They will help keep me strong and focused on the things and people that matter most. Your words of encouragement will help give me the strength I need to face and cope with the tragedy of the eventual loss of my brother. They will help keep me be strong for him and for whatever he needs now.

Listening, love and appreciating-- not judging, is what we all need to be actively doing. Not just for Scott, but for ourselves, as well.

Honesty, support and unconditional love are the things that will bring Scott a modicum of peace, comfort and hope.

I love you my brother and will talk with you soon.
I love your writings and your poem.