9.19.06, Epistrophy

I thought I'd call it "epiphany" but that seemed too pedestrian on the one hand and just too much on the other. It might not even be a legit revelatory moment into the bargain. Something about "epistrophy," the sound and sight of it, which apart from a Monk which is all I know of it, seems to fit. For the past few days I've felt generally solid, or even good . . . though some superstitious hidden part of my unsuperstitious self tells me to watch such words for jinxing . . . but feeling good. No real problems, some moments of real clarity where I almost forget, or actually do forget for just so long. A great thing — yet it emphasizes upon my mental return that question Frank asked once, so long ago it seems, about how long it takes me every morning before The Thought arrives. But, generally good, that's my point.

So here's the story. It's not a continuation of the talk about truth content (last two days) because this is something that's crept up on me today until it feels like it needs to come out. I've been catching myself having thoughts about "what it's all about" again, about the "big picture," and all the related annoying and existentially servile little questions that accompany one who spends too much time thinking of how it all should make sense. As in, "what's the meaning of life?", for example, would be the most common example; and existential angst would be the most familiar descriptor. It's as if I've found myself in a mental state that I spent altogether too much time in prior to diagnosis and Life Change and all that.

The twist, after a couple of days of such thinking, is this: if thoughts about "what it's all about" are creeping back into my brain, even after all the big realizations of Dumb Fate and Death and Nowness seemed to have set, then wouldn't that possibly be a sign of getting better? If I were to forget some of what I've been learning recently, if I were to slip into my "old ways" (yes, self-consciously deprecating or imprecating there), then maybe that's a sign I'm going in reverse physiologically too . . . ? Crazy, right? A reverse in my thinking habits means a reverse in my physical condition. Probably so.

The logic of it, however, seemed appealing to me at the time. (Does the logic even make any sense to anybody else, or is this just me here in my imaginary closet thinking too loudly?) A turn for the better is all I'm hoping for here, and this is just a potential mental framework to explain it without miracles. The premonition of good fortune without miracles. Or did I secretly, or rather, unconsciously, figure it out before and then start to feel the good-old angst again? Hmm. I ought to simply be glad there have been a few days where the pain is less and most of my body seems to be cooperating. That's all. And I'm about to head to New York for a quick trip in three days, so feeling good and resting up are what the doctor ordered. Good company, good food, good music, and pray no fatigue.

Curious that word-notion, "prayer." It seems to be happening all around me, though in forms that would surprise many who think they've got the low down on prayer. I see it take myriad forms, different incarnations and different practices, dissimilar executions. I'm glad for all of it, from whatever corner.

The Franky Scale then? You know "before" I was sick, or before it got this bad, I never or rarely had days I would say were much over a "7" or maybe "8" so I'm still wary about using the big numbers. But I'll say a solid seven/7, a 7 with plus. Now if sleep will be kind enough to not elude me, the day will close well.

9.18.06, A Brief Pause in Truth

On the Franky Scale today I probably logged a 6, feeling a moment or two behind myself all day long. There were a few moments, too, when I imagined feeling nauseated — and there is no reason for nausea right now unless it's purely psychosomatic and stems from the fact that chemo starts up again this Thursday. Anticipatory nausea. It's very odd to have the feeling and then almost simultaneously realize what it's about, that my mind produced it so perhaps my mind can eliminate it, and so on. And so I tried working that through. Too early to feel sick, ruins the good days. Otherwise there's little going on physically.

I did decide to try and step up my NCPB procedure, into the last few days of September, but no word yet. Ideally I'll be able to do it on the 27th or 29th, but it looks like I won't know until the scheduler returns tomorrow. It's such a low-risk procedure that I don't feel nervous about any danger. Still it gives me butterflies in anticipation when I wonder about its potential for success. It could be such a boon to have a significant portion of my pain just zipped away, so I quietly go around with my fingers crossed.

As for finishing yesterday's absolutely fascinating post, I'm going to take a cheap way out and only put up one additional paragraph. What follows after that still needs work, especially to be able to explain the notion of the "truth content" of a work of art — as with so many complex ideas, being able to convey it in the simplest possible form is incrdibly demanding. It's an idea I've learned and had kicking around in my head for ten years probably and yet I don't think I've ever really tried to put into very simple terms. Looking at the blank page and knowing that my simple explanation needs to be put down is proving daunting. Thus the fragmented bits and pieces approach to this whole thing. Think of it as a deep thought for the day, just one paragraph so thrilling it might well help you doze off tonight if you see it. With that, it's pasted in below. Till tomorrow.

* * *

Negative aesthetics, then, is the workings and the study of it all not from the point of positivist assertion but from negative critique. Alluded to yesterday. Simply put, the “negative” here is not bad, harmful, or unproductive in the slightest; it’s salutary, good for thinking, open-ended, creative, and tends toward the greatest degree of transparency possible. It’s a type of demystification in the arts, or demythologizing as Weber or Durkheim put talking about Modernity. We progressively shatter the myths and direct claims to truth. The point is not to study and learn “what is beautiful” according to the model of traditional aesthetics, rather it is to understand why a given artwork succeeds or doesn’t, how much truth content it has, and to do that we have to ask questions about historical context, political motivation (qui bono?), economic weight, and ethical value. Most theorists of aesthetics — take Kant as prime example — say that all this is unrelated to beauty, to the sublime, and therefore it must all be ignored and cut out. We're supposed to read a poem or look at a painting in some state of perfect remove, devoid of any personal interest, truly not caring, not being concerned with anything that could be at stake. As a remedy, negative aesthetics works to read all works of art while at the same time remembering how we view the world through a camera obscura. It’s all upside down, inverted, skewed, Alice-and-looking-glass-ed. A methodology, if you will, for getting at the truth content of a work of art.

[again, to be continued]

9.17.06, Where Truth is Found, as Promised

OK, this post has been sticking in my brain for months it seems. Part of it just resist being polished and finished and presented publicly. God damn sometimes. Since yesterday I began to explore the Idea of the Negative, or the method worldview approach mode multi-perspective . . . whatever it precisely is, and since I promised to follow up. Here it is. But, about half only. Below I'm pasting in the first half of what I'd written sometime ago about negativity and truth in relation to The Sopranos, and for various reasons it ceased being timely. One big reason was that I re-watched all the previous Sopranos seasons and lacked example material. :-) Soon I will have access to tapes of season six — doesn't that sound illicit? actual old-school "tapes"? I do need to finish up the post, get the final paragraphs straight, tie ideas together, or deliberately let them go their own ways, it's just that now it's being unruly. What's below then is about half, a "to be continued."

Franky Scale today was in the 7 area with my physical condition really seeming decent, psychology a big behind that, and then my sleep was hideously disfigured yesterday and today so that threw me off slightly.

Thanks too, especially, for the comments to yesterday's blog. Even a few months of blogging hasn't given me much insight into what people will respond to. I thought is so strange that yesterday's post seem just off kilter to me, like I was really missing something, but there was a good deal of response on and off blog. Hm.

* * *

“Where Truth is Found: Negative Aesthetics and The Sopranos”

To continue our investigation into the negative, I want to move it into an example a decent number of people will know about; if this is totally foreign to you, think of a personal film substitute. The Sopranos can be swapped out for any other well-made drama, anything made of fiction, a solid work of poetry. I say this because at times people wonder “What is up with all the Sopranos allusions in this blog?” Any cultural production, any artwork, that has a certain degree of truth content, an idea we’ll get into below, works well enough to illustrate the point.

The argument or thesis: The only real truth, the only “thing that is” or “phenomenon that is” and accurately reflects the world is what is expressed indirectly, obtusely, obscurely through allusion, which is all to say, negatively. Once you try to express a thing directly . . . poof. This is what Lacan means in psychoanalytic terms when he defines the Real (big R) as “that which cannot be symbolized.” Yet the Real is something we experience every day, every where, in every aspect of our lives; it is like the air we breath. We just can't symbolize it or express it in any way. And that is a slightly different story.

Let’s put it another way. Somewhere Picasso said “Art is the lie that makes us realize the truth.” That’s the crux of it. That is how poetry works, evocative painting, successful film, that is why fictionalized memoirs — which is simply another term for all memoirs really — are more engaging than those that hold vigorously to the straight “facts.” (I suppose the James Frey “memoir”-Oprah incident and the question of [non]facticity provides a timely example for us.) Not all art is true in this sense however it is only through the negative of expression, the indirect, the creative admixture produced by the human mind, that we find anything that really is, that is accurate, that feels universal.

As mentioned yesterday, science, being in a sense the summa of positivism, might be invoked as a counter argument (now here I’m talking about science as in “hard science” or the physical sciences) — “How can you dispute gravity or a rocket to the moon?” And yet this proves the point by failing to hold true forever. A more accurate theory, method, or technique will always be found, to challenge it, modify it, replace it. Newton to Einstein to quantum physics. Art, on the other hand, does live eternally, it only needs continual transmission and translation. The translation of a work becomes its immortality (a borrowed line). Science’s job is to fail repeatedly; good art continually pretends to fail but never really does.

A poem, a novel, a film — these forms tell you up front “I am a lie. I claim no truth value. I am imaginary,” and then they proceed to haunt us with the accuracy of their expression. So The Sopranos portrays the most dysfunctional and unrealistic of families: it’s only HBO, it’s entertainment, even the mob exists this is all make-believe. Still we find mother-son or brother-sister relationships we can identify with; we find expressions of anger that call up something within us; there are familiar lusts and passions; and the morals of the stories often make us nod in agreement — or shake our heads in denial. Both reactions, however, represent the same deep identification / recognition. It starts out with “I’m a lie” and in the end we’re disconcerted and have to keep trying to remind ourselves, “Right, this is a lie. It’s not true. That would never happen.” Why do we do that?

[to be continued]

9.16.06, Revised Schedule, & On (Mis)Understanding

[the second post, rather long and rambly, appears right after paragraph three below]

I got some really good news a couple of days ago, although it has nothing to do with cancer, at least not directly. I found out that Thomas Pynchon has a new novel coming out, "biggest" of them all so far, weighing in at 1120 pages (so says Penguin and Amazon; it's already sales ranked at about #1,900-something), and called Against the Day. Don't know the plot or many details except that it's set in the decades before and through WW I, has a markedly international sweep, and I also know that I'm excited. And I think this means I will have to reschedule some things. Like dying. OK, I've never scheduled it, granted, but I figure this way I won't even be able to die before the book comes out and I get a chance to read it. Appears sometime around November 21st, I won't be able to get through it, say, till December sometime at the earliest. Then my birthday is right around the corner, so I should wait for that. The way I figure, I'm pretty much guaranteed to be "OK" until about mid-January.

Breath a sigh of relief. Read slowly. I always do, I can't help it.

Yesterday I skipped over my blog responsibilities, I admit, but this was in part because the day felt basically good and I didn't want to interrupt it with too much "cancer thinking." You know? When you've had quite enough of something on your mind and for some inexplicable reason you then find yourself in a zone, just somewhere else and able to be away from that Big Thinking Thing. . . ? Like that, you might say. I just wanted to go through the day and not necessarily evaluate myself for life fitness. That said, it was probably a 7, and today's Franky Scale seems to be shaping up about the same.

[new addition]
On (Mis)Understanding, Communication, and the Negative

Part of this post has to do with truth, or more accurately truths in the plural, and where we find them. I have another post written during The Sopranos period (I’m waiting on season 6 so I can continue that soon), that I’d like to add into this since it might be timely again now. I’d missed the moment before, but tomorrow it might be a good follow up to this. So “this” is a round-about kind of essay into where I am usually, where I go sometimes, where I write from, and what’s behind it all. It rambles, such is the form.

Part of this post and this whole blog has to do with my writing too: how it comes across, how you read it, how I come across through the writing of posts and comments. I forget sometimes that I can come across as opinionated, at times closed-minded, and to some even I might seem, that dirtiest of dirty words, “negative.” Negativity’s story should be retold, though, to be fair. This will help to explain where I’m coming from. As I see it, the Negative is not always something “bad” or “destructive” or “harmful” — it is, rather, a tool closely and inextricably linked to critique and to the possibility improvement. Whether it be improvement of a discussion, a system, an organization, or a self. Myself not excluded, of course.

It’s been a pet project of mine since before grad school, though I didn’t realize it at the time. Later I learned that “critical philosophy” is one name for it, that people like Spinoza and Nietzsche and Marx and Adorno have all been known to use this tool, this engage in this type of philosophy. For clarity, it can be contrasted quite directly with positivist philosophy (one term any dictionary of philosophy will gloss adequately). The critical or negative approach means asking hard questions and performing critiques of all claims to knowledge and truth. All positivist claims break down at some point, even in the hard sciences, knowledge is put forward and assumed, too often, to be timeless and unchangeable. Even a common sense understanding of the sciences tells us this isn’t true (e.g., Thomas Kuhn has written on this). New knowledge is produced, paradigms change, and we correct what was incorrect about our thinking (Foucault is another one). Critical or negative philosophy takes as its task to ask the question “What is wrong with, or what structures, this claim to knowledge?”

As an rule, note what Spinoza writes: “Omnis determinatio est negatio (All things are determined by negation).” From his Epistula. I think that the more we critically analyze and think through this statement, the more truth we can find in it. That is, the more accurate we’ll find it to be. Presented with any knowledge we find flaws in logic, cracks in a rhetorical edifice, etc. and only then can we work to correct them. (An aside, I took this as a point of departure for a theory of aesthetics in grad school, in my dissertation, a thing I’m still desultorily working through it in a book manuscript.)

It relates back to being understood or misunderstood, and to my coming off as harsh sometimes — in posts, comments, emails, etc. — on an interpersonal level, in that I take this as a rule for myself, and too often I forget that not everyone does so. An error I hope I’ll be forgiven for, if I’ve offended. There’s no malice intended, just a desire to get at the core of the matter. Sometimes my brain goes on through a matter more quickly than my heart. I realize, too, there are “on” times and “off” times for this, depending on the parties involved and emotional conditions. The realization isn’t always instantaneous.

Back to the philosophical aspect, I’m hitting very basic points, so I beg the indulgence of some of you who know this too well already. : ) Knowledge is contingent, context based, determined in large part by other knowledge and experience possessed by a subject / person. Each particular situation colors a given knowledge. So we always have to analyze the context in order to understand the rightness or less rightness of a concept, idea, theory, or strategy. In communication we have to work through the contingency, or rather, through a thousand little contingencies. Truism. Still, sometimes a tall order.

Again, why rehash all this? Because I assume all it before I write anything, before I approach any situation. It’s why I’m always skeptical, or if you like, critical. It’s a positive (salutary) approach, in my view. It might come out in the form of critiques of multi-level marketing, new age-ism, religion, or alternative treatments to a disease like cancer. It might also come out in disguised form in the basics of how I try to deal with the latter every day. So, while I want all the help in the world, on the one hand, on the other, I tend toward radical skepticism and often plunge when I’m thinking it through. The critical edge is not an attempt to push anyone away, to break down the community that’s been established here.

Another aspect of what I think and go through every day, aside from the physical realities, is an intense psychological battle. How good do I feel? Or bad? Why? Am I getting better? Or, how much worse? Isn’t the clock still ticking away toward that last ding? If I feel better, is that a safe feeling, or should I lay low and be quiet about it? Will I jinx it? A former poet laureate of Utah (they have them!) died fairly recently of pancreatic cancer, and there was a news article where he told of how he feared going to bed at night because he didn’t know if it was the last time, if he’d die in his sleep. Fortunately, that’s not a fear I have, though it is an indication of what the mind can do.

There are a million such questions. They take time to work through, or to avoid, as the mood dictates. Normally I like to face them, a facing that can produce tone shifts or mood swings in the blog, which I know some of you notice. Some even worry. It might keep me from taking calls at certain times also. That kind of thing. People have been wonderful to me through this and I thank everyone for that. I can’t say it enough. Yet with all the help in the world there are still times of profound shock, disbelief, frustration, and sadness. There is a feeling where I’m preparing to miss something: life itself. Even though I don’t believe there will be a mind “on the other side” to do the “missing,” it’s hard to avoid living in moments and wondering “Will this one be repeated? Is this the last time?”

9.14.06, Cont'd Disconnection and Upcoming NCPB

Blog.

[Background music tonight: Monk’s later years work under the 2001 title Thelonious Monk: The Columbia Years, ’62-68. I’m going to give it a few good listens and see if there’s anything to some of the critiques some people have made about his later work being too tame. Too, there’s a historical angle, too, in that it jives with music, culture, politics, etc. that was around when I was born—something I’m trying to work into a sketch of the historical moment into which I was born. 1968.]

To respond on Disconnection. (The hot chocolate was at Vivace, btw, never had it at Bauhaus.) The emotional states or states of being I feel alienated from—a very apt term because I do feel I’ve been a life-laborer and now my time-work has been put in and someone else is getting the profit and/or utility from it, but if life is a metaphor for capitalism, who are the capitalists? Hmm—those states seem to be the so-called normal ones for most people. I’ve always felt like a nonconformist inside; not to claim I’ve always or simply unthinkingly been one, but rather that I think there’s an inherent value of thinking like one. At least. So in a sense my alienation isn’t new. It is, however, extreme these days.

Seeing the daily routines people have can be horrifying at times. And thinking of death so much more presently than ever before exacerbates this for me. Whether it’s materialistic attachment, ambition for ambition’s sake or for power’s sake, or all the fronting. Trivial matters also occupy so much of people’s lives, simple priorities. Now when I’m “out there” watching or dealing with people, I just feel like I see more. It all sounds trite to put it into words, but the experience is real and all I can say is that nothing in the world looks like it used to. Work, for example, is just that. Work. And I spent a hell of a lot of time “working,” and sadly doing a lot of work I thought I should be doing. When that normative superego of Work takes over, for me, the pleasure of it gets lost. Worries over superiors, evaluations, the power of the masses or “customers,” all of these become tyrannical. Seeing all this more clearly is in large part what disconnects me. (Feel like I’m spinning my wheels here, trying to get this out…)

As for the wanting of conversations to end, of mouthing certain words and thinking others or simply waiting waiting waiting for it all to end, this is clearly something I’ve felt too. Part of good old fashioned misanthropy, on the one hand. (Which, B. you should get a lot of in anthro now…no?) On the other, it’s another testament to the fact that we do live in a camera obscura world, just like Uncle Karl says.

On a different note, I wanted to follow up on the pain management issue. I’ve decided to go through with the NCPB (the neurolytic celiac plexus block) procedure, and have it scheduled currently for early October. I might switch this up to late September but we’ll see. This means I get one more hose shoved down my throat and they inject absolute alcohol into the celiac plexus. Then it dies. The theory, in three out of four cases, is that when it dies, most of the pain in that area dies. Fingers crossed, I move ahead.

Also, I’m moving into a new place come October. Very close to my old place so the neighborhood routines can continue, even though I’m much less of a bon vivant than before. It means more space and numerous other good things. More on this as it comes. For today that’s enough from me, in my little disconnected world.

Franky Scale today was pretty good, let’s say 7; though I spent half the day at school (thus “work”) and there’s an odd physical feeling about being “out and about” that I haven’t fully adjusted to. I’m realizing again, too, that it might be good to get myself doing this more regularly because the values of the distraction seem valuable.

A P.S. The comments the other day in the post "Writing Your Own Eulogy," and this might be a hairsplitting point, but this title was only metaphor. Though I am working on a memoir, I'm not trying to write my own eulogy. There's a lot tied up with eulogies, and eulogies are for the living, so when it's time for that it will be somebody else's job. Not mine.

9.13.06 Disconnect and Float

Disconnection. If one were to ask what I’ve been experiencing emotionally for the past week or so, this would be my answer. Many have asked, in fact. There is no etiology, no set of identifiable experiences that have culminated in this. It’s just a destination I myself have only realized after, apparently, arriving here. It’s disconnection from all kinds of things: people, past, place, certain emotions, states of being, time-oriented thinking, routines. I don’t know, it feels like it might even be from words, too, in some respect. At this moment, even the words feel strange in my mouth, at my finger tips. New, unfamiliar, foreign. Though I can’t say whether it was from genuine hankering or an unconscious desire to act it all out, I even ordered hot chocolate in the café today instead of coffee. Little and symbolic.

Floating. What I’ve been feeling in the streets, when I’m in public, in a crowd, a line at the store or café, in the bank. It goes along with what I already described above, as if it were the physical accompaniment. From very early on after my diagnosis I felt some degree of disconnect in the streets. I kept seeing people doing their everyday things and it would strike me as totally absurd. How important a certain small occurrence was, the over-earnestness of a certain person, spurts of anger, exuberance to the point of being obnoxious, fronting of every kind, the telling of tall tales, putting the make on someone — every thing I saw looked transparent. If not, then insignificant. Very Buddhist.

Disconnection. Floating. Transparency. Almost from the start I felt the latter, but the floating has been more recent, as if my being is slowly desubstantializing. Where is it going? No, scratch that — sounds too metaphysical or transcendent. But losing one’s solidity is legit, isn’t it? Have you never walked down the street and felt like a specter? Like you look the same, move in the same way, probably even sound the same but you’re one step out or aside. It’s all going on at some different speed. Again I’m kind of stuck describing, just that out there something seems amiss.

So the disconnection is nearly like paranoia, it is a state of intensity where “my thinking,” at least, is different. Or is it really? I won’t go into all the permutations of this. Those who have ears.

Physically I’ve been recouping from the last four weeks of toxic infusions, the pills, all the pharmacological love. In the respect the scale should go a little higher, but as the baser needs are met we become increasingly able to point out everything else that seems out of joint, right? Still, I feel better now as the drugs start to leave my system. So there is a little less on my body and a little more on my mind.

Franky Scale = 6.

9.12.06 Not a Jip

Don't feel jipped, those of you who follow the blog regularly. Today just wasn't very writerly. Though if I had any intuition I might predict insomnia and much gets written in the wee sleepless hours. Just, also, that today's Franky Scale was about a 5, never quite got on an even keel. Most of the day was spent between a couple of DVDs I promised to watch on nutritional supplements (related question below), and reading Bertrand Russell's autobiography and then part of Deleuze and Guattari's A Thousand Plateuas: Capitalism & Schosophrenia. (A day spent with those two means, perhaps, either "ooh, bad sign" or contrariwise "he must be feeling sassy." I won't tell.)

So, has anyone heard of "glyconutrients" and if so what do you know? (Besides the giver of the DVD; but thank you for thinking of me.) A related question: the health-renewing properties of aloe vera?

More later, but the immediate saddening aspect, and one that decreases the credibility of such a company as produced the DVDs and sells the glyconutrients, is that it's an MLM, multi-level marketing company. They never mention the company name and keep a lot of information hidden throughout their presentation. I don't get that approach, like people won't notice...?

OK, I'm for more food and then rest. And while I eat I'm going to watch either Caddyshack, Animal House, or LA Story. So there.

9.11.06, Writing Your Own Eulogy

Franky Scale today rides in about a 6. I've been warring with my GI functions, one of those too-much-information pieces of news that highlights how real this whole fucking mess is. So TMI, so be it. It's what I live with here.

I've been working desultorily on my memoir, and though I haven't sat to plan out this blog, it's what I want to talk about. I recall things. Stories come to mind. Long lost feelings and events I thought were lost. Little stories of my own and others making that I work with, I have all this to try and roll into a ball. My question to the universe. Or rather, it's all shaping up into the grand narrative of my life. To think, I'm involved with a diachronic tale of life about someone, myself, who other critics at least might throw into the postmodern box and throw away the key. A grand narrative to explain it all.

Or, I'm writing my own eulogy. That's also how I see it. I've been given all the time in the world (there's a bad pun for you!) and as many pages as I can crank out. My audience is forced to sit there and hear it, or so I imagine. I've been reading some pieces of narrative I've gathered along the way. There is the classic letter of excommunication from the Mormon church, the recent letter of rejection from my father, there are emails and comments from friends and family. I have boxes with letters and adolescent memories. I have a story of my birth that was recently sent to me by my birth mother. That was is unique.

It's not the content or the story itself, it's more the fact of it, of looking at it and reading through this simply told tale and thinking "Is this what happens when you die? You collect the stories you and others have and then try to piece them all together? You try to dovetail it all into some sense?" Nah. I don't care much if it makes sense. The birth story itself is actually just one puzzle piece that holds just as much weight as the stories of my birth with which I was raised, despite the difference in perspective and even in factual content.

So that's how the memoir opens for now. I was born into conflict, conflicting stories of where I came from, who I am, how mundane or miraculous was my birth. You choose. One version is highly religious, spiritual, even mythical in its proportions; the other is straightforward and matter-of-fact. I don't mind this conflict, in fact, I relish it. It's as if I were given a trope from which to begin the grand narrative, a device by which I start to tell this long story that takes themes of conflict and paradox and (cosmic) irony and expands them out from a basic difference in "take" on how I came to be. Or how I almost didn't come to be. It's just about right. Remember, there are no counterfactuals.

9.10.06, A Political Interruption

While what I'm suggesting might not be a revolution, big banners, tear gas, thrown stones, I do hope everyone is paying the very closest attention today and tomorrow. We need to think hard and critically listen, to see through the cock-n-bull political stories that will be fed to the public as anniversary gifts of 9-11. I can't not write this hearing what I am in the news.

We will see the mendacious forces of an illegitimate administration — its Bushes, Cheneys, Rices, Rumsfelds, and Roves — take full and cynical advantage of a five-year old world tragedy. Not merely a US event. They will spin the tragedy of thousands and thousands of people in the US, and tens of thousands, if not hundreds, in other countries, to their own domestic political advantage. The US constitution paralyzed, the Geneva Convention gutted, any sensible conception of human rights and international law mocked through hypocritical and selective manipulation. But Bush and his friends will talk of Iraq, and Iran don't forget, of Nazi Germany, of fascism (the form of political state of affairs which the Bush administration most closely resembles [if you honestly doubt or don't know it, look up "Fascism" in the Int'l Encyclopedia of Social & Behaioral Sciences]), and so on ad nauseum. So disgusting I could spit.

I just know that this morning it begins, on the Sunday morning TV circuit. What kind of nightmare administration do we live under? What kind of legacy are we passively perpetuating? Today and tomorrow, I can't help but think, will embody the twisted highlight of a sickening logic to their political power run amok. A ethically lascivious peep-show, the anti-reality hour for oligarchs, soldiers of fortune, and neo-fascists who will stand in a circle watching, their feet continually shifting on the sticky floor.

And you can see it for FREE, just turn on the tube.

9.09.06, Eve's Ramblings (disconnected thoughts)

[more rambling, b/f 10 pm]

Before I ramble too much more, a request. I know I have three sisters who read this blog, so is it possible to have one of you get these posts to mom? Or take turns? Would someone mind doing that for me? Nearly every time I talk to her she says she’s not heard of anything on the blog, no news, no details. Since I talk to her pretty much daily it’s not a huge issue, but I would imagine she’d like to see the blog.

All this searching about and studying about Being probably looks like it had some teleology in the light of the present “study” of it. While I grant that the two are related, even more closely than I would have thought before, the one is not just an extension of the other acclimated to death and short-term being. I’m surprised, however, by how all of the high philosophical attempts to work it out, though extremely wordy and too often burdened down with a scholarly tradition and apparatus, are at center the same as trying to get up every morning and face mortality. Knowing you’re facing death sooner than most people you know narrows those Big Question discussions down to a number of key everyday questions.

What is my desire? What is all the chaff in life? What can be eliminated without detriment? What do my actions mean, and, how screwed up are my priorities? On actions, what is left of them after I’m gone? What’s the value of social interaction? Ethical behavior? Etc. But now I feel like I’m I the laboratory and it’s possible to test theories daily. You can feel what some questions mean, whether some assertions hold water, whether some propositions are simply shit. I don’t if it’s coming out well, but I feel like Hegel’s concerns in his “Preface” are the same ones we deal with daily if we’re honest and thoughtful. Or it that feels pretentious, reverse the order, “Our simplest honest everyday concerns are actually . . .”

Death, or foreshortened life, forces all this. It's not so much about how long every morning till I think "cancer" so much as how long till I think "How much longer?" My head rattles with it all. And this is what happens mentally between bouts of various physical annoyances. It rambles, I can’t guarantee it’s entertaining, but it’s real.



[eve’s ramblings]

To blog out of nothing. Today. A 5 or a 6 for the numerically oriented. The Franky Scale (. . . where is St. Francis tonight, a cocktail in hand for me?). Feeling late. Always late, but this is all happening too early so what would I be late for? For what? Apparently last week I was late for a procedure that involved one version of “me,” but the version of me that maintains my body, governs or is governed by fatigue, experiences bouts of energy, never fully manic any-more though, this version of me was unaware of being late for anything. So the appointment made without me, the doctor scrubbed without me, the tan overconfident somewhat lacking in bedside mannerist there without me, while I was living my life and making sure I wasn’t late for anything. Till the administrator called and informed me there were two me’s, and one of them was scheduled, it’s just that the other didn’t know.

There is a parable in here somewhere? If it’s true that “because I could not wait for Death, . . .” then perhaps I’ll get lucky and be late again sometime in the near future. Death with wait in agitation, looking at his Swiss watch, wondering “What gall? What nerve?” while I’m off somewhere else writing him into a parable where he is the butt. I hope his administrator is the same as the one who called me to apologize and say I guess we assumed we had you on board for this. Nope. Not this me. Must be someone else. So Death will run around checking my usual haunts, to no avail. I’ll be sitting elsewhere with a good book, and no watch . . .

Growing inside me like knowledge. This is the thought that comes to me tonight. Wisdom — no, too high falutin. Some would have us think though that knowledge must inevitably lead somewhere, like wisdom. Hmph. Just knowing certain things and thinking them through these days. These Days, caps. What is it like . . . calls come, messages, over wireless, or through the net. But tonight too is solitary, more at this same day today. Sometimes often there is little to talk about. Times of patience, or simply, being. So much of Being accentuated these days, precisely because they stand out as being precisely “these days.” Keeps coming back, little returns of phrase. And, just being, for a little longer. No Blue Cliff Records, Dharma Bums, or else metropolitan or colonial fictions so much the less. Applicable. Not today thank you. The Stranger, Twenty Love Poems, Flower Garland Sutra / Hwaom, Satan Says, Three Poems, Tender Buttons. Philosophy and Truth and scads of other notebooks.

There — in growth, knowledge, tumors — is a strained simile. Still it serves. Sometimes even a cliché serves just right. It’s all tied through some backmountain trails and desert plateaus and long wash walks to the recent concerns I’ve had: no, let’s call it obsession. Being. The one uncanny fact is how I was obsessed before these days. For the past few years I’ve been studying through this maze on the side, the deepest philosophical problem, or question ala Camus, through Hegel and Marx, through Being and Nothingness, Being and Time, some other places. Put this on hold, there is a sound and sight afoot.

Interruptive image: A breeze flowing right through my kitchen window, with some force, and a tree sits just inside my eighth floor window, what kind, I don’t know, while I cook. When is the last time you could hear the sound of tree leaves rustling and breeze wind flowing while you stood in front of your stove. Next room the blinds sometimes reach just the right windspeed to imitate cicadas. Perfectly. Who did this? When was the last time? Now I sit to eat. There is one cup for tea, given to me by a poet named Hwang. Where is he eating tonight? There are two cups in the set. Or is he asleep in the midst of friends and hangers on, cigarette burning dangerously down to the drunk sleeping quick while one friend, who is a radical journalist and freerange intellectual, will catch it before the end. Then Hwang will wake up, laugh in small at a joke two minutes old, light another. So it goes. Eternal return. (Was it two years ago I was there grabbing the cigarette?)

More later…. That’s why it’s rambling…

9.08.06, Slow Waves

Friday hasn't brought much excitment, just some fatigue and tiredness (the former I mean technically after the chemo side effect) after a rough night's sleep last night. Franky Scale would clock in around 5. It's so arbitrary, as we've said, but on average I'll drop one right in the middle. It's mostly nausea, the coming and going of a stomach that rises up the throat, or that flips over one way and then the other.

For now, to alleviate these annoyances I'm going to talk some poems with a friend. Get away in the mind. Maybe something spontaneous and guest-bloglike will occur.

9.07.06, Chemo Just Keeps Happening

[3:22 am]
Ambien works, on occasion. Temazepam seemed to work for a while. But not lately. So there are times when midnight bathroom, water, or popsicle breaks turn into more than I had planned. Like now. Nothing to report, no dreams, no impressions, no epiphanies. Just simple insomnia with a splash of nausea. Just a record of life's simplest events. Does is bore you to tears? It does me, though those tears I can usually hold back. What constitutes boredom? I used to feel very confident that boredom was impossible for me to experience. There was simply too much, always, to do. Now with my future out of joint, boredom does seem to hold its place occasionally. It's a surprise. Life's curves. It's rife with deep thinking, sructured around the avoidance of other thoughts, too often. It's often what brings me here after I've had my water, once my popsicle is finished.

So what does it all mean? Nothing, still. (You see, it's not just questions only, but answers too.) That remains the fact to face, the one that requires the most courage. And thinking of what I'll miss, this is part of the "boredom" thinking I experience sometimes now. If I'm feeling more buddhistic and enlightened then I can tell myself my attachments are mostly taken care of. That I'm close. The trivia having become just trivia, miinutiae minutiae. The days continue to roll out however. From a day of freedom to the next when my body is disciplined with toxic anti-cancer drugs. The days in between when my mind turns at times to wondering whether . . . whether it's working, how much it's working, whether it matters, or it's just a time-filler.

Yesterday I spoke with a good friend who's been out of the loop for a while, one with whom I share quite a few values, and it was odd to hear — don't look too hard for a seque here — her take on immortality. Not any religious kind, I assure you, but rather a good old-fashioned literary kind. Also a kind I've not held much faith in lately since I question the good of what's left behind that you as subject will not be able to read or evaluate. If there is any response you won't know. Is that a kind of immortality? No next life means, quite simply, lots of silence. Despite her confidence, and there's no reason to overestimate my abilities in this regard. This is not lament, nor metaphor, just observation, the return to a question that had slipped off-stage for quite some time. Why does it arise now? Because the strangest things come to fill the sleepless brain.

Enough somnambulant wandering on my part. It's only just a bit entertainment for those moments stolen from your work. Pieces of the random thrown into the record, if record this becomes. Other than that, life is still suffering, as if was before cancer too, and we just try to alleviate it as best we know how. Tomorrow day what, 22 of the chemo cycle, or 23, or does it matter? Another day it keeps moving. Hopefully with a little sleep between now and then. I hope no one's up to read this now.

BTW, a book recommendation in Korean. There is a newish book of poetry out in Korea called "Anak'ist'u (The Anarchist)" by Chang Sogwon, published this year by Munji. The latest in their unofficial "Wangtta" series. Go read it, those friends who are in Korea or have access otherwise. It points the way for much of what's solid and forward among the newest Korean poetic voices. And Sogwon is a great guy, too, which doesn't hurt. (Minjok Kodae!)

* * *

Every Thursday — was Tuesdays previously — the same thing happens. I wake up and wonder "Do I want to eat? Well I really should." and then "Do I want to get up? Not really, but what choice?" and I ask some similar questions as means of slowly getting my brain to work, my body clean enough to go out in public, then myself clothed and packed up so I can have that last five minutes to wait before Mme X comes to get me in her superhero car. Chemo just keeps on going, every week, seemingly with or without me.

It becomes habitual, as it feels it has already, but whenever that happens a surprise is usually waiting right around the corner, no? Hm. Better be good.

* * *

Lethargy sets in. Fatigue might be a better word for it, a benzodizapine induced physical whammy. I think there is no help for me but a serious spell checking and sleep. Bringing the Franky Scale somewhere off 5.

* * *

Not a lot to add today, in terms of today events, however I did have a conversation with the GI people from the UW Medical Center the day before that's worth recounting. They called to tell me I missed my EUS procedure for the NCPB, the nerve block to reduce my "belly" pain, as they kept putting it. I said "What procedure?" And realized that the size of the UW hospital and its nature due to that size unavoidably cause Kafka-esque problems. If I were quicker to think on my feet, I would have replied like K, "Ah yes, my procedure. How did it go? Do I feel better now? Was it successful?" Just to taunt the scheduler who processed "me," and decided my appt time, and scheduled me into the doctor's morning schedule without ever consulting the real me. Very interesting.

I informed her of this, to her confusion. Then we started over and I suggested that maybe if they actually planned it with me and found out if I wanted to do the procedure than we might get somewhere. So later I was called and it started over. I am pencilled in for Oct 2, Monday late morning. I refused the 7:20 slot since I want my doctor to be fully caffeinated and to be able to practice on a few people before he gets to me. Which means I think I'm going through with it. Low risk, relatively high success rate. All to the reduction of pain.

9.06.06, Creation & Criticism, Another Poem

Franky Scale 6.73482. IV chemotherapy tomorrow again, early a.m., plug me in and let me go, drip drip recline drip drip dose. It's all a very tiring routine, but this is the final of four weeks in this immediate cycle. Enough said. "Tiring" because it is so much the same, but the sameness is not really what will "save" me. Which means it's just time removal and the Other Big Clock keeps moving. Ineluctable.

* * *
Slarry, you asked about my poetic process, the act of creation regarding that two-day old sonnet. Assuming you're asking seriously, here's a serious answer. My answer deals both with writing and with my cancer experience. I wrote it at night on 8/30. The occasion should be obvious in the broad sense; more specifically, I suppose the poem lends support to my theory that "a writer writes." Again, broad sense, every piece I write presently becomes a standstill image of the larger process I'm undergoing. Back to process, I don't ever sit down and think "OK, time to write a poem." It just wouldn't happen even if I did. I do, however, try to write whenever I get the chance, diaries, essays, problems, small fictions, whatever. It's part of my life theory and my therapy — it's probably a large part of what's kept me alive so far.

If I haven't done it already on a given day, I'll sit down before my keyboard at day's end, and then I'll begin recording events, feelings, whatever hits me. It will start to flow, so long as the mind is open to a choppy flow, verbose flow, disconnected flow, chiastic flow, etc., any kind of flow. Almost always a small narrative emerges. At times, like on 8/30, the lines about a given theme start to thicken, they condense into more economic form, the break in certain places — the lineation often happens of itself. Rhyming almost never happens of itself. Although, a poem's form might just "happen," like the near 14-line form that poem found all by itself. To push it into a rhyme scheme and sonnet form was merely a small puzzle after it was all written. A self-contained "piece" of creation will emerge and my responsibility is to See it, Extract it, and then Rework it. The latter might take one or a hundred times.

Below is another piece. I'm not big on explaining any piece, especially before it's read, . . . so, here is another piece, that's all. All I will say is that the idea came before the content did, which is why you can read it like a written record, which is why actual records could be worked into it—in that sense it is all historical and true. That being said, this piece is still only mostly done; something is still off with it. I just can't identify it yet. It's called "The Premonitioner." Note, the first stanza took place, and I wrote what I wrote, weeks before I was tested or diagnosed.

* * *

“The Premonitioner”

[Premonition]
Before Daniel’s birthday after he died: I began to write on death and beauty, two concepts, no facts, always correlate in my brain. The ellipses in the original:

“…and I suppose I should rephrase my thought about death’s approach, my approach to it, since I am going towards it but I write from where I am and where it is — once I arrive the meeting will stop the writing, but what I am doing is coming to die.”

[Image]
Reversing the direction, of death’s coming, is like hearing Monk play, really hearing. Piano keys are never pushed, they are not hit, they are not struck however gently — Monk rests his hands above the keyboard and lets them fall. Myopic naysayers could not see how he would wait, in full control,
how he would let,

the keys fall

in gentle syncopation.

[Records]
Every year I rename my journal. Two thousand six on New Year’s Day was titled “Small Steps in Death’s Shadow.”

3 January 2006 untitled day
“. . . I don’t know if stress it the cause or not but my stomach fucking killed last night, right when I was about to sleep.

“Pain tonight too on the 4th, next day.”

“— pain is the most powerful aid to mnemonics.” (Nietzsche, On the Genealogy of Morals 61) Not that we would otherwise forget. . .

[Memories]
4/5 January 2006 slow life dull pains
“. . . Next morning, the 5th, my stomach hurts still. Like this highwire tension, it seems like it won’t go away.”

I would run 6 miles a day. My halfway point a work of public, community art beneath the University Drawbridge, perhaps an anti-war piece, 14-feet tall, encircular, grey & red, in any event called “The Wall of Death.”

8 January 2006 why stay awake
“Sunday morning. Briefly, before the sun was up, sitting at my desk with a fresh cup of coffee, I thought, ‘This is not too bad, I feel pretty good being alive.’”

Consolation, there is no consolation in premonitions. Just one more ringing echo return of dumb fate speaking against the boundless sky. Deaf fate awaiting her return. A clownshow communication you can only watch if you turn on the subtitles.

Morning of 9 February:
“I woke up today and my stomach was hurting again — that nervy and painful feeling that I’ve had nearly every day for months now, and spend hundreds on for bullhsit no medical help.”

“The time to show a message is when too late and later there is no hanging in a blight.” (Stein, Tender Buttons 5)

[Tender Buttons]
2 March 2006
“In the morning I got a ride from Kim to have my endoscopy done, I lived.”

“The one thing you want is to pause so as to puzzle all this out, but that is impossible; you are moving much too fast for your momentum to be halted.” (Ashbery, Three Poems 87)

5 March 2006 cannot wait
“I keep waking up at about 5 every day — now . . . 5:21 and I finally . . . 'fuck it,' more insomnia coming . . . the summertime curse? . . . some other reason . . . stomach feels nervous all the time at night, that . . . pain upper left since last fall?”

10 March 2006 Dr. Peppin bad news
“6:02 PM, Dr. Craig Peppin just called me, at home, at about 5:50, which I’m taking as a sign that he’s concerned.

“Somehow even the line that it could be a kind of cancer just doesn’t bowl me over, but rather seems somehow appropriate, like it was only a matter of time until I would learn that in my life. Why do I feel that way? Will it all be cut short? And more strange however, when I piss and moan about my existential angst all the time, how life is so unsatisfying and I feel almost nothing but of the soul riven by lack then why should that be a worry to me?”

“And would you believe that this word could possibly be our salvation? For we are rescued by what we cannot imagine: it is what finally takes up and shuts our story. . .” (Ashbery, Three Poems 104; italics added)

9.03.06, A Sonnet from Fragility

“Life, the Crash Course Version”

Death opens vistas through its immanence. Widened
Vision and broadened possibility both result from the horror
Of the approach, the horror. Every possibility existing gossamer,
Hanging by delicate threads of if, comes to the fore of when

Pain’s freedom is finally achieved. The ambivalent joy is where
In the eye-opened crash course for life, life until death is no more
Fast on silent shoes of black patent leather across a floor
Swept clean by silence? The daily expectancy is where,

In dodging nausea, neuropathy, constipation, diarrhea, and more
The localized general pain, incessant & unseen like a cancer,
Stop a step short of simile — as cancer without “like” is interred,
Buried in the belly of everything you could have become before

Your horizon expanded to reach anything, yet restricted to the now?
Dream your fullest desire your everything, just do it fast somehow.

* * *

If there is going to be a Franky Scale I'm going to think about it some more. Even at this time of day it hasn't been long enough to say well. And sometimes it gets tiring constantly taking one's temperature.

9.02.06, The Long Arm After Sunset

[during daylight]

When the sun goes down you will find me at my keyboard.

You will not find me today, since I slowly skirt from book to book,
and from here to somewhere else.

Occupy a small piece of park grass not far from water spray, a piece no one
else wants. It's supposed to be this way. No conflict, no mine, no retroactive nostalgia, just reading and time's passage. All the innocent voyeurism.

Remember, avoid prolonged exposure to the sun while taking chemotherapy drugs.

Franky Scale: 6. Again, getting drug times, food times, sleep times all right. Somewhat trickier than it sounds.

[after sunset: (This added a few hours after this post, I guess I don't want to apologize for it, I take what you said, DP, to heart, and thanks to the both of the commentors so far. But since out of genuine caring some of you might feel this kind of "talk" is too grim, just remember it's good for me to express it. It has to come out sometimes, on occasion it just needs to make its way out. Already there is enough inside me, in all the various states of matter and emotion, to try to cap it all. I only want to stem any over reacting, just in case. This kind of pain and fore-trauma needs to be experienced for it to dissipate. I do want comments though, as I always do, since they help keep this whole thing moving and alive, they keep us in some sort of dialog I imagine. I just wanted to prevent any over reaction in them. In mutual understanding then.)]

A few comments, including some off-blog through email, have come in about my last doctor's appointment and the issue of pain. Thank you all and let's do assign a special Pile of Shit Award as was suggested. Slarry, you mentioned or asked about the procedure itself. Well, if you're going to do research you might first want to see four abstracts/articles I have on it — it actually seems quite good, low risk, and is very standard procedure for pancreatic cancer pain — and if you do look it up notice that it's officially called the NCPB, or neurolytic celiac plexus block. The celiac plexus contains the primary nerves going out from behind the pancreas, so you kill deaden the nerves and you usually end up eliminating a good deal of pain (74% of the time). One study even shows a slightly lower mortality among patients who underwent the procedure (perhaps because of increased quality of life?) but I don't believe that's an entirely reliable conclusion since the study wasn't specifically designed around that information. Overall, it looks good and has a zero percent mortality, from what I've read.

Discussing the NCPB forms a good transition into the next topic, which might fall under the category of morbid thinking. For the past couple of days I've been more preoccupied — not unhealthily — with death time. Reading the abstracts for those articles is part of the reason. Information about those who undergo the procedure inevitably leads to specifics about how many people undergo a re-do after about three months, and how many don't live that long.

Couple that with dreams. Where supposedly the unconscious, which itself is structured like a language, speaks. A wish fulfilled, though usually several steps removed through displacement, symbolism, overdetermination, etc. Two dreams this week remind in part why sleep might be necessary but not always desirable for me. One, I totally lost the content of, but the feeling I awoke with is better left unsaid. True to the dream structure, it's what cannot be said. In the other, however, I do remember some of it and it involved spending some time with someone I know, who's dead. Someone I knew. You don't have to be Freud to makes some sense of it.

The Wednesday meeting with those two doctors, which in terms of being put off and realizing how (un)important you are to The System truly resonates with David's story about his mother, and the dreams, and a little catch up on my own management schedule all conspire against high Franky Scale numbers. Then there is simple the passage of time. There is Camus telling how only for the condemned is there liberation, only for those last days does the indifference to draining minutiae reveal itself. There is also at times a feeling not of proactive choosing the absurd, more Camus (an active daily confrontation of a meaningless life, rather than a living death chosen by others), but of just being tired. Only problem is that I can't always distinguish the cause — from chemotherapy, from missing sleep due to pain or due to anxiety, from — here comes a term I don't like to even say or think — cachexia. The wasting away process.

Your cancer grows while the rest of you wastes away. It just gets "healthier" while you pay the price. Quite a lot of people die specifically from cachexia. People with pancreatic cancer that is. Now, do I apologize for being so heavy here? Well, it has to happen somewhere and I expect if you're reading, then to some extent, you're already along for the ride. I read the words "advanced" and "terminal" and "late stage" and that too is tiring. It creates an unproductive cycle where learning about the disease might "save your life" and yet the more you read the more you're battered over the head with these terms. With the reminder.

The book What Dying People Want is so benign and sensitive compared to a medical article. Yet that too, I can only stand to read it for so many pages at a time. . . . Where is all this going? How did it get started? I thought of writing about little everyday routines, about the park, the sunset, normalcy, about sitting outside editing poems for a friend and making notes for projects in the future.

But today the reminder has been serious, the words "terminal" and "advanced." Sharp awareness of what time a pill must go down. So in the end, the sun, park, poems, etc., I still feel like much of these is being held a certain distance out in front of me, held by some anonymous hand at the end of a very long arm. I don't know whose arm, but it's sinewy, strong, looks possessed of endurance. I stand and stare, it waits extended. A game of chicken where no movement wins. A game with no winning — so like one dear friend recently reminded, I have to keep standing, face up, taking all the absurd fucking time that hangs in between.

9.01.06, Deciding on Next Procedure

This is all boring material but needs to be passed on. It's all about my Wednesday doctor's appointment with Dr. Saunders to discuss a possible procedure I might undergo for pain reduction. (below)

Today has been quiet and bookish, I've been holed up trying to finish some writing. For Franky Scale everything is fine, no incident...what's the number for that? If I stick with trying to rate it based on lack of pain or other problems, which I probably should, then 7 today. Despite my use of narcotics. (below)

The Celiac Plexus: This endoscopic procedure involves the standard EUS (endoscopic ultrasound, or garden hose down the throat with a camera and a needle or two on it, shoved down into the gut or “belly” as the first doctor liked to call it) and then the injection of alcohol into the celiac plexus in order to numb or kill the related nerves. The goal is to reduce abdominal pain, and a side effect/bonus is the likelihood that I’ll be able to reduce the amount of “narcotics” I take. Less constipation results too, we hope. This was the gist of my Wednesday appointment with Dr. Saunders, although most of my time was spent with a Dr. Scanga because the former was stuck with a patient for about 45 minutes.

Curious, there was a distinctly judgmental or moralistic tone I caught during this appointment: “You’re taking a HUNDRED mg of oxycontin every day?”, bushy eyebrows raised, and you could just hear the suggestion in his voice. This was Scanga. I got the sense of being looked at askew like (a) I shouldn’t need that much medication for pain, (b) I should tough it out for odd puritanical reasons, (c) I might be faking it to try and overly enjoy the meds, or (d) who knows. I said nothing then, except when later in our consult I told them that pain management is the single key to improving the quality of my life, which is short, and something they need to consider. Don’t know why but I could only say anything indirectly at the time. The whole issue of terminal-ity hadn’t been brought up and I feel they were more uncomfortable talking about it than I. The difference between these two GI fellows and Dr. Whiting and EVERYONE at the SCCA is like night and day. The former group just doesn’t seem to get it, the latter is entirely sympathetic and would never criticize what you're doing or how you’re doing it to relieve your pain, or manage it. Why should they, you're fucking dying?

Wednesday’s boys were a little lacking, then, in their terminal bedside manner. And I learned a new angle on the use of euphemism. So many times they use is to protect the patient or themselves, to make the world sound softer, more fuzzy, to hide a procedure or fact from immediate understanding. Non-resectable, for example, means “we can’t operate”; ablation, killing some nerves and possibly reduce pain; apoptosis, the dying off of cells; etc. What I found on Wednesday was the reverse use of euphemism, that is, the deliberate non-use of a more euphemistic term to make it all sound more coarse.

At SCCA my pain meds are usual referred to by drug name, as opiates, or even opioids. The term “narcotics,” with is its potentially flashy and negative connotations we get from the news and drug wars, is rarely used. At this appointment, however, the word narcotic was used regularly. Call me paranoid, if you will, but the term was used to a specific non-euphemistic end, that’s what I sensed. You tell someone they’re using quite a lot of narcotics as opposed to quite a lot of opioids and I think a different message is conveyed.

Otherwise they seemed fine, competent (to the degree I can judge this), and possibly skilled. Risk involved is loss of feeling in the lower body, something very, very unlikely they assure me as they stress how routine this 15-minute procedure really is. In very rare cases paralysis might occur, but they dodged this question, which I asked because Whiting told me about it. (He’s far more straightforward.) Doctor #1, Scanga, was the fill-in-while-real-doctor-is-late guy who had to gather general info about me and press on my stomach while the primary GI guy or EUS specialist was busy with another patient. Doctor #2 came in only to give me a little sales pitch of why I might do the procedure; and to tell me he thinks I’m a likely candidate for it given my pain situation. It works, he says, in 70-80 percent of the patients, who will feel significant pain reduction; however, they might have to have the thing redone in three to six months time.

Time to do more homework on doctor #2 (Dr. Saunders), on the procedure, and then decide whether to do it.

8.31.06, Post Chemo Day

Chemo's done for the day, my Franky Scale is about 5, feeling drained and just wiped out in general from lying all morning with my pot-o-cath accessed, my veins all open. Now my eyes need closing and rest of me needs some sleeping. Rest now, and later tonight I'll get up some details from my labs and my appointment in GI territory yesterday.

8.30.06, Another Doctor in the House

I'll put today's Franky Scale at about a 6, since it felt slow and somewhat empty just pouring out time. At four, I went in to meet with another GI doctor to discuss a procedure that might help alleviate some pain, had to wait, of course, and then all the usual meeting with a new doctor routine.

In fact most of it's so routine I can't bear to write details about it tonight, but I'll give it a shot after a.m. chemo tomorrow. What a treat to wake up to. The Disenchanted Princess (have you noticed how many people like to drop the modifier in that title?) has returned to the disenchanted forest that abuts NYC. My studio unshrunk once more, and I return to chemo tomorrow. Then I'll try to get across all the details from Dr. GI about my guts, or "belly" as they like to keep calling it. My "belly pain" — makes me feel slightly infantilized, kind of like being in grad school again.

OK, tomorrow, chemo, Tales of Endoscopy, the GI man and belly pain. All interspersed with a highly philosophical day in general, trust me. Till then.

8.29.06, MS in a Bottle

One of the only rules of life that seemed to remain consistent for me, until about 5 months ago, and even then my diagnosis only confirmed it, was that life always throws you what you don't expect. A partial sports metaphor, I realize, but not meant to be . . . Now, too, I find another confirmation of it. Like most every academic I know I was always plagued by insecurity about "the book," especially the first book, and how crucial it is in terms of securing one's career and locking in tenure. The other items required for tenure, such as service, teaching, and non-book publications have all been easy enough so far; but the book psychology can be fierce and debilitating. After my diagnosis, all the worry about "Is it good enough?" has vanished.

A good sign, one could say. At the same time, one might say "an inconsequential" sign because the tenure game is no longer part of my individual scenario, simply no point in thinking about it any more. It makes sense then that I'd stop worrying about "the book." Still, I figure I'll send off the book, which is a real sleeper, to see what happens. If I can survive the waiting period while editors ignore my envelope, open it and slide it back into a massive pile of similarly boring projects "to do," and then procrastinate the actual evaluation process of determining whether they want to send off my MS for anonymous review by "experts" in my field. My field which has less than a handful of experts in it, if you specifically count it as being Korean poetry. (I guess this should be a fore-warning to at least one of the blog readers who will likely get a copy of what I send out, so one more thing that will show up on your plate.)

Now I yeild to the process, since the psychology of getting the manuscript just that much better and making my arguments that much more cogent and my writing that much clearer has been swept aside. The Thing will go off, this week I hope, and like Poe's MS in a bottle it's thrown into this sea of waiting, of expectancy, of not knowing. When it finally doesn't matter much what becomes of the project, that's the moment the project strangely moves itself back onto my plate. And since there is no longer such a complex in my head about the quality of the Thing, I let myself do it again. Life's weirdness, life's unexpectedness at every turn.

I was teased very recently, lovingly of course, about how I should spend my time worrying about "work" and sublimating my desires and pleasure in order "to get things done." None the less, I walk back into the realm of sublimation. Hm. It all sounds so much more mundane and trivial once it's put down in writing in front of me, but it's what life has for me right now. Perhaps it's part of a different psychology of distraction and part of some therapy by which I ignore the daily fact of disease, the constant progress of it all, and keep my eyes on something else. It is slightly more enjoyable than counting out pills and recording what I took at what time, how much, how many, what time, when again, and so on. During week two of this chemo cycle, before it's time to restage and see whether any of this treatment is even working, what else is there to do? I start to wonder why I'm even writing this here today. . . .

The day is young still but I'll put my Franky Scale at a 6 or 7. My GI system is not completely obedient but also not as rebellious as it could be. More to come perhaps, but for now I'm sublimating.

8.28.06, Take Out

The grand and traumatic experiences of life, the zenith of an existential crisis, snuffing out a youthful candle, a host of other colorful metaphors, and in the midst of it all it's relatively comforting to know that for a lot of us who are lucky enough, there is still take out pizza. The man who does the NPR Cancer Blog (Leroy Sievers, link from my blog) mentions somewhere that he is not one of those people who believes diet will change anything to do with his treatment, so he eats whatever he feels like. Chalks it up to that often elusive but usually always useful phrase, quality of life. I understand where he's coming from.

They haven't told me I must stop eating pizza — in fact, they haven't given me any imperatives at all because in reality the only issue I deal with any more is quality of life. A few questions about specifics on longevity, a few questions of "how you want to be" and that is all. Point was, though, that if they said "no pizza" just like if they said "no coffee" I'd probably just say "Thanks for playing. Next." Which is to say, tonight's dinner was pizza and it was yummy.

Franky Scale stayed around a 7 today. Was able to get out and run again, with a little motivation from the increasingly- and ever-popular K., and that worked out pretty well. Hot for this town at about 85. A great physical distraction, however, and it does play a role in an important, albeit rigged, psychological game. Plus, I'm very sure I've gained that pound, maybe even over a pound. (I suppose the key would be to get a scale.) Even with cancer, it's all baby steps. I bought a blender last week. I can only make such commitments a little at a time :-)

It's been a good week and this is reflected somewhat in a few shorter blogs, it seems. On the other hand, you shouldn't read that as one week of long blogs equals Scott is not doing well. Just to say a good week, a needed week. More as we go, including trauma and the existential. For now goodnight. Back to My Own Private Idaho.

7.27.06, Sunny & No Clouds

I'll give everyone's eyes and my fingers a rest today, except the Franky Scale. Very warm for Seattle today, about 85 at it's 7 p.m. Nothing but sun everywhere. The scale comes in at a 7, with little going on in terms of side effects. Minor nausea. General fatigue that comes and goes. I've never tried to count how often it happens but, say, two episodes today where I felt like a bus hit me. That' relatively normal, however, unless we're in a week with no chemo drugs at all. And with that, until tomorrow.

8.26.06, Dr. Hands, Dim Sum, and ADBs

Dr. Hands, Dim Sum and ADBs

Get the health issues out of the way first. Normally today would be about the worst on the post-chemo nausea. I felt all right for most of it however, holding up well until the end of coffee after dim sum when I started to flag. I saw that coming. Pain management is going better today, which leaves the sneakiness of nausea as my primary challenge. Franky Scale 7 to 6. (And the chemo drugs finally arrived!) The first half of the day was well worth it, the second half too is quieting down into copasetic calm. Tuna, mango salsa, a movie, little pleasures now.

•The Return of Dr. Hands: A clarification from the “two noteworthy” point I mentioned about Bone Scan Day has be requested. So in order to please. The Dr. Hands story was simply that when I had my port-o-cath put into my upper right chest, the little port for receiving needles and then a catheter tube that moves up from there over my clavicle and then down into my heart for easy drug delivery — my mainline, my doctor was quite friendly with the his hands on service. Very generous, one might say. Perhaps he wanted to make sure I was as comfortable as possible, or perhaps years of medical experience had perfected his bedside manner as a semi-retired surgeon, or perhaps we had something special, which is what I like to think. The special attention might have been creepy on another day but there had been so much bad news and so much tragedy already in the previous couple of weeks that this incident struck me more as comical. Also, having my mother and 60-year old cousin there to watch, and K was there too, made it all the more surreal. Somebody’s unconscious mind had broken the reality barrier and was running amok in the pre-surgery room. I was just witness. And my mother was witness, too, I guess, although she didn’t see anything out of the ordinary. So she said later.

There was a connection between this doctor and our home state of Utah. Small world. So the talk extended from medical to geographical and biographical. All the while I was receiving this extra gift of touch on both pecs and other areas of my neck and chest. Enough to say that it stuck in my mind. So while lying on the bone scan table, my skeleton being slowly read in detail, the technician was making small talk and it turned to his medical alma mater, the University of Utah. “So,” pregnant pause, “do you know Dr. Hands?” And then he waited another second. I wanted to turn my head and see if K was also having this same “What the hell?” moment, but couldn’t. Was he asking me if I wanted more of the special service during my bone scan? Was he with quality control to check and see how my previous procedure was? Who knew?

Turned out to be nothing, with the tech simply making a Utah connection, then telling us how the doctor’s famous for a catheter line he invented call the “Hands Line.” So his intro to that was “Have you heard of the Hands Line?” And so it went. Not as exciting as the first story, just a humorous reminder.

• The original blog items I thought I’d write on were dim sum and ADBs. Dim Sum is a straightforward concept. The ADB, I think, requires some explanation. This morning K and I, the always lovely Ms. T and ever dashing Machine (mostly blog names) went for dim sum in the International District. To Jade Garden. Very tasty food and serious satiation by the time were done with the twenty or so little steamers of food. Chrysanthemum tea, cup after cup, prawns, shrimp, eggplant, lobster, gai lan (Chinese broccoli), and more, more, more. I’m working on gaining wait now. My last doctor visit had me up about half a pound — and I realize that could be just daily variation but as I see it, it’s up. And I’m going to get the rest of that pound and maybe one more.

Showing up late Saturday morning and seeing the place packed, standing room only, people waiting for 45 minutes on the sidewalk out front is a very good indication of how good the food is. So we made the wait, did not try the “cancer” excuse to get up in the line, not yet on that one, and left with stomachs singing. Mine just a bit off key.

• The ADB (Accelerated Death Benefit)
This is not an insurance tool I would like to have to know about, knowledge life would be sweeter without. How often, on the other hand, is knowledge not comforting in life? The ADB conversation I might hold till tomorrow given post-length at this point. It might be obvious what it’s about, but I was planning to go through the psychology of what it’s like to “get certified” as terminal and having an insurance company then give you an early benefit based on this. More later.

8.25.06, The Joy of Insurance

In the middle of cancer, according to my experience so far, there are literally thousands of tasks, errands, calls, and other "things" to do. The experience of being sick and feeling knocked back and forth by either nausea or pain, or constipation or for some diarrhea, or whatever, tends to exacerbate the feeling of lots to do. Being behind the 8 ball is a metaphor that takes on a crazy number of possible meanings here.

Recently, as in last few days, there are meetings with nurses, doctors, and dieticians (this one with no "-tician" in her "diet") during the IV chemo session, calls to get Rx's, trips to pick them up, questions of leave of absence (calls made, forms out, forms in, forms forwarded, calls made again, etc.), and trying to just get the drugs I need to stay alive. This last one, I wish it were hypberbole, but no. Curascript, as I've described before, is the mail-order cartel I must deal with, says my insurance company Uniform Medical, or I will not be reimbursed for the drugs. Drugs in question are zofran, a 60-dollar-per-pill anti nausea drug, and xeloda, which is an anti-cancer drug (i.e., a chemotherapy drug).

The xeloda appears to be just too hard to get to me, so the people call and leave messages like "Your order that was supposed to get to you by Aug 21 won't be shipped until the 26th and that only if you call us within a five-minute widow at the end of February during leap year, send us biometric proof of your identity (eyes, finger and toe prints), and reveal to us the identity of the energy company CEOs who met with Cheney to plan the Iraq War a few years ago. Thank you. Call if you have any questions."

Really, they've only demanded two or three things. They say fax in the Rx and we'll send it; then not you, your doctor has to call it in to us; then, "OK, we'll send it by 8/22 when you need it for the only therapy keeping you alive." Then, nothing. I call and learn, "You'll get it on the 26th" or some such date. "Did I mention I have terminal cancer?" "Well, your insurance company won't approve the 90-day scrip your doctor called in. They only do 30 days." Jesus! So they can't apparently just fill that much and get it to me on time. I have to call the nurse, she calls the doctor, they call Curastript, I have to call them again too or the order's not valid, then we're all set. For Saturday, we think. In the meantime, I've already pushed back the start date for the chemo drug by a day — again, not vitamins here but kind of important ones for my life. Solution, I have to get a 6-pill temporary script filled locally, cost $101, no reimbursement because they're not from Curascript.

The people at SCCA, nurses Theresa and Foon, doctor Sam Whiting — they are great, wonderful "service," all very human and understanding and respectful, etc. Props to all of them. Curascript, I give them the Pile of Shit award for today. Great big pile. Yes, I can get through it all but it's wild how much one has to go through sometimes. If this weeks is successful, I'll get my chemo drugs and begin them only moderately late; I'll finally get my medical leave approved; and I just might get my Accelerated Death Benefit taken care of too. (Any cancer people out there who want to discuss details of insurance, leaves, life insurance, and the like, please let me know. Too much detail to just dump on everyone else but for those who want to know, it's here.)

Franky Scale, 7ish, before the anti-nausea drugs kicked in it was lower, so we keep our fingers crossed. This morning K and I headed down to Pike Place Market and the little hole-in-the-wall crumpet shop, coffee and crumpets with ricotta and boysenberry preserves. Fresh flowers and nectarines. Yummy.

8.24.06, IV Chemo Second Day, Round 2

Waves of fatigue is the best way to describe today. Getting an accurate description of the IV chemo day, however, is no simple task. For the Franky Scale, perhaps a 5. It needs to be sletp off, I need to simply recuperate. It will come.

Chemo, trip to Trader Joe's in a kind of delirium, some lunch, then to bed. Some crazy chemo sweats. Then to bed.

8.23.06, Bone Scan

Franky Scale today was a 6 or so. Not too bad but some wild fatigue at different points. I spent a good part of the day at SCCA, the cancer hospital, too, which can be demanding or surprising by turns. You never can tell. Tomorrow is the second dose of IV chemo for this new regimen, last week being the taxotere and tomorrow the start of xeloda and gemcitabine. Side effects for the first week were pretty minor, nausea not terribly serious yet and, again, fatigue probably the primary issue.

Today's main activity was the bone scan: an injection of radioactive isotopes, good for what ails you, then a three-hour wait, then the scan itself. It's a head-to-toe test where my whole skeleton is mapped out based on gamma rays I give off with my injection cocktail. I didn't get to see the images myself but the Disenchanted Princess did. The tech doctor man, named Mychael with a Y, said the ribs on my left side looked fine. Checking for cancer in those bones was the goal, or rather, ruling it out was the goal; and since he said to me the images looked good in that respect I'm knocking wood, so to speak, and assuming that's a good result. More detailed information should be available tomorrow, but since it's an IV chemo day I'm not going to promise that I'll be able to blog the results. By Friday I will however.

During the test today, about a 20-minute procedure, two noteworthy things happened. First one was simply pain. Since all this started, around the time of diagnosis or shortly thereafter, I've been unable to lie on my back for any length of time, say longer that a couple of minutes, because the cancer pain would just start to take off whenever I tried. I've never pushed the theory that I should stay off my back, rather I've just stayed on my left or right side, used more pillows to prop my head up, and gone with it. (Staying on my left side has produced an odd quarter-sized spot of pain, not terrible though, for which today's test was ordered. That's what all this was about.) But for the test, which is relatively much longer than a CT scan, which I do regularly like a Happy Hour these days, with no problems, this bone scan takes much longer, and I really got to test the don't-lie-on-your-back theory.

I was right. Don't do it. I was able to hang with it for about 15 minutes but the pain was increasing, but there was some chit chat (which is part of the second noteworthy item, that the doctor asked me out of nowhere I thought "So, do you know Dr. Hands?" (yes, pseudonym) at which question I was shocked — if you remember there was that early incident of the special care and attention I was given when I had my port-o-cath put in . . . I'll leave that one there), there was enough distraction that is, and I tried to keep my mind off it. Keep taking deep breaths, don't think pain, try to fall asleep, etc. Whatever it takes. After most of the test, just as the tech doc was about to continue however, I knew I needed a break, had to get on my side, sit up, do something to change positions, which I knew would cut the pain.

What all this means I don't know. That I have cancer in my gut, I knew that already. That there is something about the primary tumor that makes being supine suck, that was simply, or amply, reconfirmed. That's all. Not an exciting story but those are the details for the day. I guess it means that if I'm in for surgery at any point in the future, they'll need to be extra generous with my anesthetic. Maybe that's the only lesson.

Pain is a crazy phenomenon. It's clearly physical, on the one hand, and also clearly a large part of is psychological. I know it can be controlled to a great degree, I just don't hold all the keys to that secret yet. If anyone has suggestions for how to "erase" pain or stop it from registering when you simply have to deal with it for a given period of time, I'd love to hear them. Most of what I've read simply says "You have the right to be pain free," "Don't hesitate to communicate to your nurse or doctor about your pain," etc. Helpful, but then it's hard to say to the pain "I have a RIGHT to be free from you goddamit!" Pain is deaf apparently. Little concern for people's rights. Not a discriminator of persons, as they say.

Till Happy Hour tomorrow.

8.22.06, Guest Blog. Melancholy and Mystery of Family - A Salt Lake Journey

[Hey. Here's going to be a Guest Blog from Frank, from the Utah trip last week, a few days old but it's the process of digesting and the digest of processing that was required. Frank also gave it to me two days ago and the remainder is my process of putting off a bit, as is my wont. Today's Franky Scale is an 8, physically pretty good, emotionally very good, a visit from the Disenchanted Princess begins. Also, Mme X had a momentous day that I'm happy about and glad to share part of, so these things add up. Huge congrats to you X. Now, I'm just going to check some edits on the post and will be back with it shortly, tonight. I'll leave this up for most of tomorrow, and if I come with a post of substance I'll put it up at night. Peace.]

Guest Blog:

The Melancholy and Mystery of Family – A Salt Lake Journey.

Traveling across the country to visit a dying friend sucks. Never mind the crowds, crying babies, shoe removal and metal objects at the security points. It’s the anxiety of seeing your dying friend and the fact that you are fucking helpless to fix him. My visit with Mr. Jones was not my last precious moments with him but it crosses your mind. Is this the last time?

My visit with Mr. Jones and his family was bittersweet. When it comes to talking about families and the nuisances between all the players –well…. people in glasses houses, if you catch my drift. Three older sisters, a saint of a mother, a non-existent father, partners, nephews, beautiful babies, the best fucking carrot cake I still think about, and the ubiquitous drama that exists between all families. A friend once told me spending time with families is like being around fish. After three days they start to stink. Amazingly,
it was five days and the fish remained edible.

We all cope with loss differently. I tend to cry a lot. I think about the living Scott and I have shared and put the impending death of my friend out of my mind until we started to talk about what to leave behind and executing a will. Then it hits you. That is living in the now, the harsh reality of losing a loved one, family or friend. It’s reality punching you in the adam’s apple, you can’t talk or even breathe…. so you just listen. Listen to your friend – Always.

The drama started before we even arrived at Sherri and Stepheni’s. The details are hard to grasp – almost unbelievable and you wonder what the fuck was the person thinking. So I listened and listened more, digesting the events of earlier that day that I wasn’t around to see. We all cope differently – Right? Mr. Jones manned up and settled that one.

I spent hours with S and S and there was great pain in that too, the impending unbearable loss of a brother who may be put on a pedestal but I have to say… rightly so. I stood under a full moon with a grieving sister who no doubt loves her brother and tried to make sense of the senseless.

I visited Stepheni at her office to steal her wheels and met her coworkers who all knew Mr. Jones from this blog. The palpable concern and genuine emotion from them all was there too, more coping skills again from anonymous blog readers who were in the midst of a dying cyber celebrity. Greetings to you guys from Mr. McMahon, ask Steph to explain that one.

The big Sunday family get together was marred somewhat by the lack of some family not posting on what will most likely be the last time you will all be together…at least with Scott in SLC. I can’t remember the excuse for not being there but that is something they will have to live with. Sue and Susan were fantastic hosts and coping skills were again ever present with good food and my nurse who made the name Collins proud. To all Scott’s nieces and nephews you were all huge to come and show your uncle how much you care. In the end it is your family that will always come through. After the party, Mr. J and I paid our respects to Daniel at his grave and he reflected on his own loss. The mystery of his nephew’s life and death still haunts him. The sun began to fall and cast long shadows on the tombstones as we left and that moment will remain with me forever.

Finally, how will I ever forget looking into the eyes of a grieving mother struggling with the loss of her only son? Nadine, you will always be in my heart. If the miracle you want happens I will sign up with Mr. Smith. Your bran muffins and carrot cake are made with huge love and as I walked by the pan of carrot cake and stole another fraction of your cake each time I realized food is yet another coping program I need to work on. I love you for your honesty and admire your faith. More importantly, thank you for giving me the pleasure of knowing your son and I hope to one day share all your infinite wisdom with my own family along with my memories of your son.

S and S – thank you for your hospitality again – I love you both!
Mr. Jones…..I am always listening. NO pain please! Do what ever it takes….but please…no pain for you.

FGC

8.21.06, New Chemo Wk 2 & Think Before You Die

[noonish post] "Think Before You Die"

I was reading again in another one of the many books on Death that are out there, not the Kuhl book this time, but for some continual nagging curiosity and because I had always had book on "my list," it was the Tibetan Book of the Dead. The long and short of which book, according to the commentary I have is that it's the "Tibetan science of death, and the art of dying," something long those lines. All very mystical, to be sure, but the claim is for a scientific approach to death, science as in the Ger. Wissenschaft, a systematic, formalized approach.

My reading last night was rather compelling for a while, got me to thinking "ok, maybe this is what it's like to try and die, in those actual moments, with a highly concscious lucidity rather than in the grip of blind fear..." Then the commentary moved from the descriptions of the "8 stages of death" that claim to describe the dissolution of each physical sense, corresponding "elemental" changes, e.g., fire to wind, wind to consciousness, etc. —one clear problematic aspect is that all of this is described in the particular and mystical idiom of a form of Tibetan Buddhism, in sum, it sounds pretty hokey unless you can read vigilantly through the metaphor.

What's my point? Well, as I said the reading was compelling when it discussed these stages, idiomatically, but then it went on to talk about the "reality of liberation," the What Happens After That. Freedom from ego-attacment, world-attachment, freedom from all the hassles that cause suffering, and nirvana—if one is so lucky—as this kind of blissful oblivion. Problem is, I start realizing, is that this book, too, just like all the new-age and contemporary spiritualist and religious books that attempt to exlpain death, relies on unfulfilled promises, rosey pictures of promised "after-life," and its own version of the narration no one has ever returned to tell and no one has heard. If you allow for revelation, you can argue against me here. If not, I rest my case. Whether centuries old "wisdom" or latter-day "wisdom," it's telling that each tale relies on the same technique, each type of tale fails in the same manner.

Why is it not comforting? If this question needs to be answered, actually, then it's presumptuous in the same sense most every book I've found has been: someone who hasn't gone through an experience is telling everyone else what it's like. It's fiction in the negative sense of that term: not a consciously wrought linguistic deception that admits its own constructedness, admits that "Hey, I'm just a story, man." When that admission is made, fiction, poetry, theater, art, all convey the most accurate truths we have access to, as I see it; when the presumption of truth-assertion is made, it all falls apart. (Here's the short form fatal argument against positivism.) You could also promise me eternal procreation, my own planets to create and rule, a universe where I make all the rules (as in a certain religion popular in Utah), or you can save me a seat in the angelic eternal choir—though I can't sing, or grant me the return to that energy that is Everything, the nirvanic peace of never having to return. But, explanations of the post-mortem are a bit hollow and even offensive, especially for someone who's really up against the wall.

I do like the idea of a systematic understanding of and approach to death. Why? Because the more ignorance I can clear away, the more fear is cleared away at the same time. The Big Mystery of Death, however, keeps its cool in the face of it all. (If I may quote Elvis Costello, "Death wears a big hat, 'cause he's a big bloke.") Nobody comes back with a notebook and ink-stained fingers. Every explanation fails precisely when it crosses the mortality line and starts claiming what can't be verified. If it's all guesswork, then why not ask the people who are closest to the question? Those surrounded with immanence.

Could I stand accused of not having faith? Yes. Precisely, I'm all about immanent critique. Or, I want to hold on to my critical faculties, rather, as long as I can. Whatever I can learn about the here-until-then, the how-to-live-with-terminal-knowledge, etc., that's the kind of thing I want to learn. Which is also why the book by Kuhl is so good. It does three crucial things: first, it basically doesn't presume to tell you what will happen after you die; second, it treats the dying subject, the dying person, with respect and as a legitimate producer of knowledge; and third, it gives an accurate picture of real-life issues the terminally ill confront.

It seems this has become a sort of rant. So be it. If this blog does any good in the World, small world as it is, I hope part of it will be to address some of those issues for those who care. I hope it simply tells what it's like, in my own idiom. The memoir has the same basic purpose. There is a fairly detailed explanation of my "idiom" in there however, so it's accordingly longer and more personal in a sense. The blog is, well, it's like dying in medius res.

[metacomment: This, the longer post with somewhat more thought put into it, seems to be the result of successful pain management. When I play catch-up with my pain it's tough to sit and "get it all down," the form of what I write reflects that. I get out a Franky Scale number, a few notes on general condition, and the like; but when I chase down the pain a large space opens up for something creative. Something here about poetry and pain, something of Maslow too I guess. Nothing new.]

[a.m. post] Today is day 5 of the first week, started last Thursday, and I keep checking the effects of the new chemo regimen: nausea, fatigue, energy level (when there's no fatigue), general motivation, overall psych. The past few mornings have been slow for me to re-enter to the Real world, and that, after rather sketchy and shitty sleep to begin with. Two nights ago I switched back to ambien for sleep, and this helped, kept me in bed for about a 6-hour stretch at a time, once. That's good for me these days. Last night was truly twisted, after an ambien again, I woke up between 2 and 3 a.m. slowly but deliberately as if were directly because of the ambien, as if my body said "You only get so many ambien hours each week and yours are up!" So they were, so was I.

My solution was to add to the ambien a temazepam in the middle of the night, which may or may not have helped, at least it clogged up my neurotransmitters and blood vessels and still couldn't keep me in bed past 6-something.

What does all this mean? Hm. I'm going to hold off on the official Franky Scale but unless I'm clobbered with fatigue or nausea later on I'd expect a 7.

For various reasons I'm still out a coffee pot and a blender, which I'm becoming convinced I need to improve my quality of life :-), and will probably be out on the search for these between writing bouts. There's also an entire apartment to be cleaned, laundry to be finished, some other shopping to do, to prepare for my guest this week, my disenchanted friend from NY. So, airport tomorrow, bone scan on Wednesday, chemo on Thursday, day of rest on Friday — a weekly plan.

8.20.06, Just a Number

Franky Scale, 7 overall, bouts of flagging in between though, down to 5s, then up, then flag... just Sunday, books, books, chemo fatigue.

Also, the photos from 8.18, the family BBQ shots, have been changed to accommodate the desires of those shot. So I dropped out of the second shot and Frank and my Mom are there instead.