Saturday, August 19, 2006

8.19.06, Saturday Stasis

Saturday slow and static, with the first half day spent trying to catch some illusive sleep fantasy — the one that says it actually can be done, uninterrupted, all at one "sitting," then I moved out to the neighborhood, the 1500-calorie smoothy, more of Kuhl's book in a local cafe, small shopping. This cafe though, despite the fact that many coffee snobs extol its virtues tirelessly, the music is always inescapably bad, so today I was prepared with my "big" headphones, the kind that remind of the 70's or of radio show hosts sitting behind their consoles. The hips kids seem to love 'em. Me, headphones, and a bright orange book. The overcaffeinated and exuberant Russians, however, of course chose to sit right behind me, so I could enjoy the white noise even with headphones on.

There are marble countertops facing a new park and reservoir in my neighborhood. Trees, shade, shattered bits of light in the millions, walkers, grass, and a questionably successful fountain-structure which is the park's high point and resembles spitting-up as metaphor. Cal Anderson Park maybe? Many non-Seattlites don't realize that most of the city's parks and campus spaces, including Volunteer Park at the far northern end of my neighborhood, were layed out and designed by Frederick Law Olmstead, yes of Central Park, etc. so this new little park has steep competition. . . . why am I talking about this? It was my view today. Context and history.

Symptoms-wise, some nausea, a lot of fatigue, and mostly just trying to figure out where the pain is going; "up" has been the basic answer, still I need to jump a few steps ahead of it and make sure I keep it in check. While I do that I've got either Reservoir Dogs, not a theme, Cronenberg's Naked Lunch, or Melvin Van Peeble's 1971 Sweet Sweetback's Baadassss Song to choose from. (Comments from our lurking resident mister film expert filmophile?)

Replaced the coffee pot — does not fit. Refuse to see symbolism in this.

And now the daily number on the Franky Scale, a somewhat listless 6. Listless days are part of a normal life like the rest, so nothing that worries me much. If previous chemo schedules are any indication of how this new chemo schedule will go, then today should be the worst in terms of fatigue and nausea. Enjoy your Saturday, here's to the worst.

P.S. to Larry & Lefty, Apple has a new firmware update available today, which will help your laptop's fan work more efficiently and keep things cooler, DOWNLOAD IT! Don't hit the "Later" button; or if you already did that then go back to the menu under the apple icon, desktop far left, and click on "Software Update." A little reminder.

Friday, August 18, 2006

8.18.06, Photos of the Family Affair

For some of my friends who haven't seen me in a while, I know there's been much speculation about "how I look." Usually, and fortunately, their expectations are low and I surprise them. Related to this I was just weighed again during my oil change and consult with my oncologist yesterday and I came to about 82-something kilos with pants on, or about 180 lbs. For about 10-plus years I've hovered around 185 so this isn't too bad for weight loss. In any event, I've got some pictures kicking around, recent ones, and I thought I'd post one or two. These are from Aug. 13, family BBQ. (Nothing naked this time, sorry.)

From left to right, here we have Sue (1st), my mom "Nasal" or "Gicky Jim" (buggin' out), me (4th), Sheri (2nd), Stacey (3rd).

St. Francis and my mother (Whitney #2 and Jasmine Luna in the background left; inside Sue and Sue's house.)

8.18.06, Upcoming Procedures & Book Tidbits

Sitting here in Seattle it's only 78, but I have a black cat at my left (on floor expectant) and an orange one at my right (on the floor sprawled).

Today another Pile of Shit Award today, to Mr. Bush, for his brilliantly argued and highly articulate refutation of the court decision that wire tapping any random US citizen at will is, in fact, unconstitutional. Others beside Bush, we are told, "do not understand the world in which we live." Huh. Would that Huxley and Orwell were less prescient.

Upcoming, after a discussion with Dr. Whiting yesterday on pain management issues, I'm going into the administrative pipeline for a bone scan and possibly another EUS (the always pleasant endoscopic ultrasound, hoses slid gently down the throat, into the guts and then a very scientific form of voyeurism — what are they doing in there? The nerves that is.)

A bit more later on what's involved with each but for now just the teaser...

And a Franky Scale number of a slight 6 or near 5, the first part of the day going fairly well and I was able to get out and do some work, the infamous and highly secretive writing cabal, W.OR.D., met once more — at least with me there too. Now later in the day some fatigue is setting in, probably from the chemo. This round of chemo with the new order of drugs means a new learning curve. Yesterday I was given only taxotere & now I wait and see how my body likes it. Every week I get IV chemo they do a blood work-up on me, not all of the results are that interesting, but one small issue is that I'm still a bit anemic. A few months of it at this point.

Book tidbits from What Dying People Want:
— The author frequently emphasizes listening and hearing, which means he gets it. Here is one example. P. xx.
•Here is his research goal, to find out "What is it like to get up every day knowing that the disease within you will likely cause your death? The methodology I [the Dr.] used was that of existential phenomenology. What does that mean? It means that I had to stop being a detective. I had to learn to listen, not only with my ears but with my heart as well. I had to set aside biases, to stop seeking to predict, exlpain, or control . . . . I had to suspend judgment and hear the testimony, to bear witness to the experience of living and dying with a terminal illness."

I, myself, don't know what it's like to be your shoes. I wont front. What Kuhl writes above, though, makes very good sense from my perspective. The few times I've been offered presumptuous advice or an other's projected desires, it falls pretty flat with me.

— With family, and friends, people often don't realize when processing their grief that *they have no more time*, what they have for sure is NOW. P. 28.
•"I wanted to tell Ben [terminally ill] and his family that the only time available to them is now. One thing that they do not need to wait for is the work that could be done with regard to their relationships, to speak the unspeakable, to really hear what they have to say to one another, to share their memories — the challenges and pains they experienced as a family."

It may not all have to be said Today, still we need to remember that our normal fear and procrastination patterns don't serve us well anymore.

— The patient doesn't often hear much of anything, literally, after the word "cancer" or "terminal," etc., are uttered by a doctor. P.52.
• "I have come to realize that once people hear words such as "cancer," "AIDS," "no more treatment options," of "ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease), they do not hear anything else."

I point this one out simply because it's uncanny, to me, this is just what I felt. It is a physical shock. Ted was sitting there to my right when I was told and I'm not sure what he heard or felt. But for me, the words "I can't do anything to cure you" and "The average longevity in this situation is about 6 to 8 months" were a bit like a surprise blow to the head, a real and forceful one, say with a 2 x 4 or rather a 4 x 4. For a few moments I had to try and focus, make sure I could maintain my vision, my actual ability to see and not tunnel, and make sure I wasn't going to pass out. Listening came a few moments later, even though my hand with the pen in it kept moving across the page while most of this was happening. That's the socio-cultural origin of cool, poise when you have no other alternative ;-)

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.

Wednesday, August 16, 2006

8.16.06, Mind & Body

Today's Franky Scale has been capricious, holding out fairly well near 7 much of the day, but after this afternoon it dipped down to the 5-6 range. I'm realizing some specific things about how breakthrough pain seems to work.

The mind and body connection is not one that I've ever doubted, though in the extremely cheesy and over-the-top manner it is sometimes presented I do have a difficult time swallowing it. That said, there seems to be a connection between smoothness in other areas of life and pain management. Specifically this has to do with the type of pain I've usually characterized as "cancer pain," to distinguish it from the more fleeting kinds that pay little visits. This I will pay attention to; all issues related to pain management tend to move to the top of my priority list when they come up.

Today I picked up another one of the Dying Books, a reference to it came up somewhere I can't recall immediately, but I came across it today in a local independent bookstore — what luck. The title is What Dying People Want: Practical Wisdom for the End of Life, and though it is written by David Kuhl, who is not a dead person, it seems to have the right intentions. Not too cheesyy on first glance and actually directed to people in the thick of terminal illness. My fingers are crossed, and I'll post later with a more substantive review.

In terms of reviews, there's a book of Korean poetry translations done by a certain regular blog reader which seems to be headed to press soon. This I know because part of my review of it, from elsewhere, might be appearing on the back cover, a small first for me. More than that, congratulations to you, you anonymous translator and poet! Don't know to what degree I might have helped it along the way, but I hope it was measurable in some degree. And I do hope a signed copy will float my way if all the timing goes well. (hint, hint)

Dust is still settling in this here studio, unoccupied but catfull for the past week. Perhaps when more settles I can work on some metaphors once more. The poem "A Contemporary Family History," too, btw, is actuallyy fairly polished I just saw, but might need revision still if it's to be seen in public. I must beg some time and indulgence from you on that front.

Tuesday, August 15, 2006

8.15.06, Travelogue to Family History

Greetings from the land of travel. Myself just in the door. About 30 minutes ago, greeted by a two squeeling cats who are very deprived or feeling so at the moment, also by numerous fruit flies who have been enjoying the two anjou (ripe when I left) pears on my countertop, lots of cat hair, and other related types of traveltime accumulations.

Franky Scale, 6, but it seems strangely like my pain level is trying to increase. Whether this is from travel, stress, pushing harder, more pretension of normalcy which I believe must happen a bit when I find myself in Utah, or some other reasons — I'm trying to pay more attention to my body, be more sensitive, learn what is going on. It's a whole new non-scientific science involved with having your body slowly (or not so slowly) transformed.

I am noticing that what I metaphorically called the egg timer here on the blog a few times, as a reference to the radical foreshortening of my time Here, remains accurate enough an expression; however, I am beginning to think that the actual mechanism by which time passes is rather a pain timer. Some kind of a pain clock by which the mechanisms of the metaphor actual reverse themselves — instead of "time" "running out" the process seems more accurate as having "pain" "adding up." The general motion of the pain economy then is increase, and if we follow Marxist economic analysis of capital, of course, there should be a limit to this increase. Then a new economy must take its place. For those critical of Marx's analysis, which even the most unreconstructed of us must admit is extremely tardy if not actually mistaken, then a more hopeful outcome to all this can be expected. How's that for a reversal? (I think there will be more to come on the concept of the Pain Timer.)

I began writing one parable in the last two days, or allegory rather, to cover some of Salt Lake City and my trip there, two pages and rising; but it isn't ready yet. Loose ties, uneven parallels, underdeveloped themes as yet. The memoir, too, oh boy, there is much more material now after this last trip to Utah: many stories told about the past, some revelations, some realizations. To the extent that "my memoir" is actually going to be a contemporary family history, told by a premature chronicler with literary pretensions and an occasionally obsessional written memory, then I should say that project is rapidly evolving now. But I must cut it short there. Much, much more strategizing is required.

Now that I think of it, once I settle in at home, perhaps I'll post (so later tonight) a "family" poem I've had kicking around for some time which happens to be called "A Contemporary Family History"—and I have no idea off the top of my head whether it's germane, but all the players are the same.

Once again, an appeal to all of you who read and follow the blog, let's call it a philosophical question of the everyday variety. Write in an tell me what you think about how much "honesty" should be put into a memoir? Where does one draw lines between self-experience and Other-experience? How much would you tell of your own history, long or short?

Monday, August 14, 2006

8.14.06, Do Not Mismanage

I tried to keep today from being too hectic and planned out, neither of which characteristics are very good for calm and rejuvenation. But in the end I slacked off and missed a pain dose this afternoon and by about 8 p.m. or so I was perplexed and why the hell I was in so much pain. First goal, then, was to eliminate the pain, get back on top of it; second goal, find out whether it was breakthrough pain, something new, or what. Once I was up from lying down in order to get my body in check, always on either side never on the back, I realized it was Stupidity Pain. A whole new category. And goddam the stuff can be tiring; there is something very draining about pain as if one area hurts but a dozen related areas must tense up or respond in their own ways too.

So the Franky Scale, based on context as it is and being posted after all that, is 5. Not the model patient day for me, more like the day of the suck patient. Though I do want to do a better job for the next few days because the new chemo regimen will begin on Thursday, and chemo is always less fun than other days.

I'll ponder the events of Zion and Utah a bit further before reporting more about this trip. Tomorrow's the last day. Half day, then off with my carry-on full of gels and liquids to the airport.

On this last point, and I hope this won't be asking for trouble, but if there are any of you who would like to know specifics about family dynamics in the terminal cancer process, please send me a comment and ask. Perhaps anyone going through this might wonder how one family does it, tries to get through it, and maybe some interactive q & a will help. Just a thought.

Sunday, August 13, 2006

8.13.06, Time & Space Theft (+ update)

Sometimes fighting for sleep — the paradox of being beat, fatigued, and yet unable to stay asleep — ceases to be worth it. Today being one of those days, get up at the butt-crack of dawn and then nap later. Worried a bit that sleep and rest are restorative, it's still too much to just stay in the bed.

What I discovered though, still in SLC mind you, was the empty kitchen, fresh pot of coffee waiting for me to make it, in silence. My book, laptop, headphones, my prunejuice. Something wrong with that list . . . Anyway, I found those moments in that space of total silence, the quiet house, the great capacious empty. I stole it all. So it seemed. I can live under whatever illusion is necessary if it's just what's needed to spend the life of one whole cup of fresh coffee. From brim to bottom, first cup out of the pot, not soul around. A fat new book on the counter in front of me. Twenty or so pills and supplements. (Again the old Sesame Street lesson: One of these things is not like the others.) And still! I take some pills and it's before my body begins to give me too much grief, not too much more than during sleep, so I feel fine.

I got to steal a bit of Shangri-La. A wee bit of peace. Coffee, two bran muffins from my mother. A whole day like this: would be close to a 10 on the Franky Scale. Would be. In the subjunctive universe.

[NB - remember that all of what was posted yesterday came out of this brain, just mine, not any of the characters named. Any likeness or resemblancece to any reals person was purely unintended and accidental. As in all of life.]

More to come.

[12:15 a.m.] A theif in a BBQ. Stealing little more than undersized turkey dogs and some hummus, the occasional laugh and some shutter clicks. A snort or two of gatorade on the side. Most all of the invited family was there. Watching my very own mother flirt. Rather low key, which I believe is just what the doctor ordered. Great hosting, thank you S & S, . . . a family full of "S" children and all the lesbians and partners are "S's" too. Hm. Someone is working in mysterious ways somewhere.

Wait a minute, let me break the code and retell part of how this gathering went. It was truly nice, enjoyable, and yet not without sadness. To say families are complex is a radical form of understatement. Mine radically fits this mold. The letter from my father that was disussed on the blog not long ago, which I refer to as the "last letter" from him, will explain in part why he wasn't there. My going the extra mile with him has gone on for decades, and I'm not that old, but it stopped after the letter. God's imaginary judgment cast at you like a sad little stone is enough to tell me that there is no more water in that well. That is, a marathon's worth of extra miles has been enough, and running is more difficult for me with what I have to deal with now. My other siblings, who comment regularly, have their issues with him too, and all this combines to help make his choices about getting or accepting invitations. No one, however, was surprised by the absence and to be honest it helps make the meeting of family easier and more enjoyable. There were two other absences I don't know the reason for, but again, I can't make all the extra efforts anymore to find out these things. The rest of us were there, all knowing what we know about me and my Little Inappropriate Friend, but talking and laughing and having a good time. Families are nothing if not amorphous and they are based on much more than blood. So the rest of us were there. I want to thank everyone for coming, for making the effort, and for maintaining that amorphous bond.

Let me say that trips to SLC are difficult, just from the logistical standpoint. Getting here is fairly easy but when the family has four generations in it, even all living rather close, it's just too much to make the rounds as once might have happened. Even the calls and text messages, let alone visits, can add up to make one trip feel like several. You get both the good and the not-so-good with this. We all try to manage in our own ways, and I feel bad at times for not being able to manage as well as before, but I hope this is understood. This afternoon came off well, the greater part of dysfunction taking a nap for a few hours. There should be more than pictures left over.

Now, the sound of crickets before sleep, when I'm used to highway white noise shouts and sirens.

The "last night" of this trip with Francis in the house and a good deal of coversation in the now, as some like to say: pain and dignity, freedom, minutia, the next, what has been, techniques of how to deal (a very good simple site with the URL of "" with five very very good pieces of straight dealing which I could not recommend highly enough), friendship/familyship, love and being lucky enough to "have it good," an arachnid eavesdropper on the wall, enlightenment, fairness, listening, sometimes just sound for this listening, and the need for listening for later sound, career and avocation, a certain continuum (spectrum if you prefer), the balance between the pleasure principle and the reality principle. A Franky Scale with Frank present: priceless. Peace.