26 July 2006, Pile of Shit Award -
Goes to the Washington State Supreme Court for upholding the so-called “’Defense of Marriage Act” today. Very large pile.
[N.B. The following is just sit-up-and-write material from late, late last night. Not really intended for the blog, which means it might come across as another heavy or at least brutally honest entry. Just so you know. --And a P.S. My chemo regimen is the same as it has been, the last post was only about a changed attitude, not treatment. -Mr. J]
"The Overwhelming Question"
It’s the middle of the night, once again. This time and I are becoming very familiar, reacquainted you might say, since for years these were often the hours when I would work fiendishly or I would cut loose and prepare myself to work more later. To work more, soon as possible. That’s all my life was about, not about the release and the cutting loose — do not be mistaken. It was all about work, hundreds of hours during the weeks. I was always living for the future, for some time other than the Present or the Now. We discussed this, Hala and Joaqin and I at Salty’s for dinner Sunday. Mostly it picked up with Joaqin while Hala was away from the table, then it returned on the ride home, as I was starting to fade as seems to be my wont these days after even a little social interaction. Three of us talking, it fascinated me to see one of us so driven and to see how that drive can battle for if not occlude the possibility of a space where being is present. There is no new age connotation here, this is simply about living more now. Eradicate the jargon from the mind. Though it could be termed half-Hegelian. Fascinating, too, to see another one of us, more aligned with this thinking than I’ve been before. So it was like sitting in between two handmade mirrors, my image appears in both but in different versions, different times, different possibles according to the mirror maker.
These hours and I, it turns out, are forming a new and hapless bond. Unwanted really, but unavoidable too. There don’t even seem to be pharmacological remedies for this, it’s insomniac tendencies which I had already developed fully in my adult life — and in my earlier years, my twenties, how I naively wished for that, for being unable to sleep because “I could get so much done, write all the books, read everything, be so productive!” — Ha! my blindness — now these tendencies come back from their physiological base and it’s not so much a haunting as a “Well, here we are again, what’s best to do?” Good question. What is best to do and what is to be done in this circumstance?
It happens that I feel fatigued or tired at the end of the day, though I’ve become more immune to the fatigue of chemotherapy just like the cancer in my body is becoming immune to it fucking too, and then I’ll snap off the bedside lamp, slide the books aside and hope sleep comes. I wait, a conscious waiting, which is the whole problem. Thoughts race or simply move languidly rather, like a day that’s too hot, a day in the life of the poor with no AC in the car, none in the house, no where to go to be relieved. It’s that heat of pace at which my mind begins to revolve and wonder what the three months will be like. What will I really get done? What do I really want to get done? Does any of it matter? Do my survivors care? Do they say so now and then they will forget? Granted, I have great supporters and loved ones, but let’s not kid ourselves, everyone will be forgotten, why not me too. Of course I will, and it’s healthy that I should. The megalomaniacal thoughts that say anything otherwise are just that, little phantasies of the self that some of us need, some of us have needed to continue on in a life where the only meaning we “get” is what we “make.” Thus poetry.
Don’t kid yourself on this point either. Of course it’s not just verse and lineated lines of economically executed language — no, it’s the creations of the self, it’s the systems and theories, the critique, the art, the work or piece whatever genre, without the bonds of genre. It could be a house, an addition. A sketch. Even a poem perhaps. But only the making means shit, only the making will last, if even that does. That, too, explains my profession. I don’t do poetry in any traditional sense, though I do know how and speak it when I have too; I do making, I do human creativity and expression, and I’m concerned with the why and how it might improve this world. Otherwise, it’s just not worth the time it takes to express it, hear it, or see it. The personal is political, you’re god damn right it is. The rest are poseurs.
I don’t want to import more meaning into what’s happening to me than is due, into the fact that I’m dying now, quickly in terms relative to most people I know. Still, what I’ve said above is one way to describe what I’m doing now. Forget the pain, or “you’ll have to loan me pain,” but that is not the point. The myriad symptoms, the private shame-ridden moments, the invisible weakness, the lows, that’s bullshit. What’s left even for myself might be affected and colored and symptomatized in reverse, by all that, but what I have left is some kind of making. Every day is performance art. And that is not a line to bring a grin to anyone’s lips; nor is it one to bring a smirk. If that’s happened then you’ve misunderstood. What’s at stake here is the Real Thing, it’s For Keeps. Not to absolve myself from fuck-up’s, denial, laziness, and the rest of what isn’t laudable. It is merely to say that every good bit of energy is turned into something that will last, somehow. It is also used therapeutically to keep myself going with some sense of style — I’ve never been picky, only concerned, perhaps overly, with style. (The truth will out. These are the remnants and growths of my coming of age during the Mod revival of the late 70s and early 80s; not so much the Punk, although that did have a lot to do with fertilizing the ground for my future politics.) This brings us to this moment, in the now familiar wee hours, into reflections on what is worth doing and why.
I don’t believe I will be conscious after death, I don’t believe, sorry to say, that I will see any of you whom I love, I don’t believe a “new” body is waiting for me. I won’t see your children grow. For what purpose would any of that be true, if not to comfort the living in their fear? Enough of that. Without those beliefs, those leaps of faith that unconditionally require the suspension of one’s critical faculties, you are left with yourself, your loved ones, and what you can or might do. Let us say that hypothetical one of you wonders why I’m up at night. Again, it isn’t fear. Can you believe me? I’m not worried about the fears of death traditionally conceived. The process of dying, as in Epicurus’ fourth fear that I’ve explained elsewhere, that does bring me pause sometimes because (1) I hate to be too reliant on others and don’t want to inconvenience people, (2) because physical pain is truly distracting and disallows other activity, and (3) because I do not want to take up time or space in this world when I am worthless and cannot offer anything any longer. To “live” as a vegetable is bullshit, a curse worse that what Dante ever saw, worse than the self-righteously blinded and religiously deluded could ever imagine for their enemies. Their neighbors, remember?
With that said, I come back around to doing and to how much unknowable time there is for me to do. So far I’ve been able to so something, who knows how important; but through the blog, for example, and through my regular meetings with friends I’ve seen genuine concern and heard that something worthwhile is in the offing. I hope people who’ve had their vision occluded by a few unfortunate name-brand experiences or school names will realize that if there’s anything good coming out of my existence right now, it’s not from being a professor, from having a Ph.D., formal schooling, or any of that. It might more accurately be said to come in spite of all that. Having a keen eye on the world, feeling experiences with an open sensitivity, if at times with too much sensitivity, caring about people (not all, I’m neither saint nor altruist), having the good or ill fortune to be placed in some odd experiences, and also at times having the stones to walk head first into others. Those, I think, make something good of a life.
This is all unplanned, like my death, there is no outline to guide me through this piece, there is no map despite my fondness for maps, literal and metaphorical. (I picked up a great copy of a newish translation of Dante’s Inferno recently, translated as Hell, and it was not the quality of the words I wanted, it was the maps and diagrams. It’s laid out graphically, not scenes of torture, not Blakean drawings of the mystic, but nearly architectural sketches of what is where, what one might expect in the space of experience. (It explains in part why one of my only published essays deals with "cartographies of utopia.") This is extemporaneous. What do you make of that? I too don’t know. It’s an anti-eulogy. It’s an anti-systematic handbook. If so, then for what? It’s simply what I have. All I have.
In the poesis, then, what is it that feels good? What kind of making brings you pleasure in addition to warding off the unpleasure that naturally comes to us all? In doing what are you lost? Truly, beautifully lost? Where are those doings? And now, too late, I only start to see how crucial it is to find them. I’ve had hundreds and hundreds of questions put to me since my diagnosis, and more accurately my prognosis, was made public, many of them have been posted on Do Not Go Gentle, many discussed there. Most elsewhere. Many are repeats, many, candidly speaking, are uninsightful — but how many of us know just what to say or ask? I don’t begrudge any of them really. Some just seem to have cut to the heart of the things: what will you do that matters? And why do those things? No doubt I’ll have a pretty good sense of this in about three months or so, when the clock really steps up its pace, when my timeline starts to deviate radically from most all of yours. Then I’ll know something more concretely. Pause for thought.
One thing of which I’m sure, it’s not distraction. Travel is fine, fun is fine, shopping fine, responsible debauchery too. There is an amazing book to be written on Distraction Theory, I haven’t gotten to it though I have notes everywhere, it hasn’t been written, but it’s out there in the future. I do know, however, that distraction is almost an insult to dying consciously, dare I use the cliché, of dying with dignity. Again, I see nothing wrong with travel, fun, debauchery, but they are not it. Not for me, and I’m not sure that I can offer any further explanation of why, they just miss the point, by definition.
Distraction is the activity that averts your eyes from seeing what is really happening. There might be no outside of ideology, but distraction is the indulgence in ideology. (e.g., Think fascism.) Just as faith, in my view, is the escape from critical thinking. Certain dispositions require these, so be it, it’s not something we have much control of: it’s what highlights the crucial difference between Jung and Freud. The former believes too much in a voluntarist psychology, he must explain the psyche and twist it so as to leave a possible space for the I to act freely; the latter knows the determinist web we find ourselves caught in, if we're lucky we find ourselves. Marx saw it with political economy and history, faults aside. Boils on his backside keeping him from sitting to finish Capital. Nietzsche saw it with society’s morals and values, faults and all. Arms wrapped around a beaten horse in madness.
So that is the base, the substructure if you will, for how to think of doing. In the doing the key aspect I keep seeing is a degree of choice within the circumstances I find myself in. That is, what will I do with what I have? What will I be able to do? What are my desires and where do they mesh with the doing? It’s still hard to believe that Old Man Eliot could write this, at age 24: “To have squeezed the universe into a ball / To roll it toward some overwhelming question,” and then, in fact, earlier in the poem, the question itself. In short, “Do I dare / Disturb the universe?” That is the overwhelming question. How to begin? How should I presume? Yes. Yes. Worse and more overwhelming still, however, is to ask and only to ask and to leave it at that, and that is Prufrock’s curse.
. . . The curse of J. Alfred Prufrock.
Wednesday, July 26, 2006
Tuesday, July 25, 2006
7.25.06, A Whole New Brand of Chemo, Sort Of
Chemo begins at 10 A.M. today. When you read this I'll be lying on my little bed, with a book I probably won't be reading.
Chemo has taken on new meaning now — starting today, there are no more healing hopes involved, it's merely palliative (or at least that is the one hope that remains, how long will it keep the cancer slow, slow, slower?). Part of me thinks "we knew this," we did know this, didn't we; but did we really know this in our hearts? Did I know it? Did I believe it?
As long as you fight part of you must remain in ignorance.
It is also the 25th of July and I was told I have pancreatic cancer on the 21st of March, four solid months. Though of course it was more like the first of April when I was told the really good news: "It's metastacized." Three months, three and a half. That one exercise, where you sit down with a calendar, and a pen, or pencil preferably, and Really Figure Things Out. Never done that.
Also, today's post, humble though it is, is the 100th post the blog. Congratulations to your eyes for making it this long.
If I have a chance later on I'll post a Franky Scale number but no guarantees. Tuesday is always a strange beast, on which I might feel rather functional later on in the day, or simply not. Tuesday is a day with no promises.
[Posted after 10 pm: It's difficult to pull a reliable Franky Scale 3 out of, a hat, say, when you've been sleeping most of the day, but I'll just say about 5.3 for the hell of it. There is also some news about changing my chemotherapy regimen to another order of the same three drugs, as I mentioned in one of the posts on the seond restaging, to an order which holds some promise for "increased longevity", the euhpemism we're searching for now. More on that later, perhaps tomorrow. Thanks to all of you for continued reading and support.]
Chemo has taken on new meaning now — starting today, there are no more healing hopes involved, it's merely palliative (or at least that is the one hope that remains, how long will it keep the cancer slow, slow, slower?). Part of me thinks "we knew this," we did know this, didn't we; but did we really know this in our hearts? Did I know it? Did I believe it?
As long as you fight part of you must remain in ignorance.
It is also the 25th of July and I was told I have pancreatic cancer on the 21st of March, four solid months. Though of course it was more like the first of April when I was told the really good news: "It's metastacized." Three months, three and a half. That one exercise, where you sit down with a calendar, and a pen, or pencil preferably, and Really Figure Things Out. Never done that.
Also, today's post, humble though it is, is the 100th post the blog. Congratulations to your eyes for making it this long.
If I have a chance later on I'll post a Franky Scale number but no guarantees. Tuesday is always a strange beast, on which I might feel rather functional later on in the day, or simply not. Tuesday is a day with no promises.
[Posted after 10 pm: It's difficult to pull a reliable Franky Scale 3 out of, a hat, say, when you've been sleeping most of the day, but I'll just say about 5.3 for the hell of it. There is also some news about changing my chemotherapy regimen to another order of the same three drugs, as I mentioned in one of the posts on the seond restaging, to an order which holds some promise for "increased longevity", the euhpemism we're searching for now. More on that later, perhaps tomorrow. Thanks to all of you for continued reading and support.]
Monday, July 24, 2006
7.24.06, Fear of Death, Pt. 2 Rejoinder
[A desire to get high enough to escape is genuine, but like some of you know, the ability has been snatched away from me. Standing there looking at the cool beaded glass of water in your thirst, and yet. High like that is mere memory.]
Part 1. The Phys Report: Franky Scale, it’s fine, not stellar but doing basically well. You can imagine a 6 if you’re conservative, or think a 7 if it helps you. Today is the third chemo day of the 6th cycle, little peach-colored pills, pills, pills, & tomorrow will be IV chemo in the hospital again, then another week, another IV session, and so on.
Part 2. Back to Death: Today’s post is comforting, you’ll be glad to know. Yesterday’s post was not meant to be so unsettling, so perhaps this further explanation will ease some minds. Although frankly speaking I cannot see much advantage to skirting any of the issues that are uncomfortable in this experience; if there were such advantage, why write any of this? Why would you be reading it? Anyone can lie to you about the end of life and an “afterlife.” It happens at least once a week or five times a day all over the world. Here we’re engaged in more experiential project.
Therefore we come to this reminder about fear and death, or rather a rejoinder of sorts to comments made and unmade related to yesterday’s post. The Epicurean line of thinking, remember half of what I put up is just summary of that position, is that “Death means nothing to us” (this is treated in numerous places in Warren’s book, for those who want more). First, it’s that a person’s consciousness ceases at death so there is no more anxiety, fear, desire, remorse, and so on ad infinitum, to be concerned with. There are, literally, no worries. There is, then, no harm in death. Second is that with death the “atoms of the soul” — even for those who believe in Soul — are scattered, depart, go elsewhere, vacation; thus there are no sensations of the body and mind and soul. It’s the eternal disconnect, the cell phone battery dies for the last time, you do not have your cord for recharging it. Fini. With no sensations there can be no pains. Again, no harm in death.
Does this sound flippant? I want to stress though that if there is no sentient being left and there are no sensations within the body, then there is no worry, no fear, and no pain. Some might want to argue for a state of bliss, explained with various psychological need reasons; my point, however, and this is meant as comfort to everyone here, even the good old fashioned materialists (myself included in both groups), that there is no reason to fear it. To fear It, very large “I.” It is simply nothing, no-thing, no-experience, no-phenomenon, and thus cannot harm us in any way. In coldly logical terms, the Epicurean “Key Doctrine” puts it like this:
“Death is nothing to us; for what is disperses does not perceive, and what does not perceive is nothing to us” (qtd in Warren 17).
Moving on to my observations about the mine and yours of fear: What’s above forms the backdrop logic that made me point out the dialectical chronological nature of fear, based on its being Self or Other centered — that becomes more paramount, it seems, because while I am sentient and feel so much physically the chance for fear is greatly increased. Thus fear number four was / is perhaps the most daunting. The rest, I spit on them. Two and three I feel I’ve already gone through, and fear number one is simply too much of a void to be comprehended. Fairy tales, scary movies, irrational fears, curses, anthropomorphic fates, harpies, ghosts, and gods — it’s all part of the same stuff. And the Other-based fear, while existing now too, truly takes hold when the reality of the situation sets in, when the physical nature of things changes so that my person, my “I,” is gone and there’s nothing left but narrative, knick knacks, and memory.
Someone in a private email even pointed out an unexpected upside to “the knowing” (i.e., of premature death, related to fear #3) which is having the time, at least theoretically, to say what you want and do what you want before you go. This is only partly correct; I’ve tried to convey this before but until you actually find yourself in this position the mere imagining of it is rather vague and incomprehensible. Some comforts might be had, but there are also an unyielding anxiety and pressure that come with the erasure of fear three (not knowing when you’ll die). Difficult sleeping each night as symptom of this. Recently I gave words to that: I am so bone tired today all I want to do is go over there, lie down, forget in sleep, but there is no forgetting, and if I do it, that just means one less night to sleep, one less time to close the books and turn out the lights. A genuinely melancholy thought. Thanks to the emailer, but too, please try to see both sides at least, or even the third, since there are always at least three sides to every story. (Right, Frank?)
I’ll offer the most forceful counter-argument myself, to save time: it hinges on belief in post mortem consciousness. Just like all of Christianity or Islam hinge on a conscious choice of faith (Abraham, Isaac, Kierkegaard). The edifice of the argument stands or falls on that, a cornerstone, regardless of how rigorously logical the system might be qua (closed) total system. For this author, then, no p.m. consciousness, ergo, no fear, no pain.
For those who are really engaged in this practice of thinking through the problem, and those who know me already know this, but my favorite and, I think, by far the most profound thinking along these lines (of “life and death” and what it means to do both) is found in the first few pages of Albert Camus’ book The Myth of Sisyphus. I’ve held back from exploring that here, since I thing it would truly push the envelope. Still hold back.
Part 1. The Phys Report: Franky Scale, it’s fine, not stellar but doing basically well. You can imagine a 6 if you’re conservative, or think a 7 if it helps you. Today is the third chemo day of the 6th cycle, little peach-colored pills, pills, pills, & tomorrow will be IV chemo in the hospital again, then another week, another IV session, and so on.
Part 2. Back to Death: Today’s post is comforting, you’ll be glad to know. Yesterday’s post was not meant to be so unsettling, so perhaps this further explanation will ease some minds. Although frankly speaking I cannot see much advantage to skirting any of the issues that are uncomfortable in this experience; if there were such advantage, why write any of this? Why would you be reading it? Anyone can lie to you about the end of life and an “afterlife.” It happens at least once a week or five times a day all over the world. Here we’re engaged in more experiential project.
Therefore we come to this reminder about fear and death, or rather a rejoinder of sorts to comments made and unmade related to yesterday’s post. The Epicurean line of thinking, remember half of what I put up is just summary of that position, is that “Death means nothing to us” (this is treated in numerous places in Warren’s book, for those who want more). First, it’s that a person’s consciousness ceases at death so there is no more anxiety, fear, desire, remorse, and so on ad infinitum, to be concerned with. There are, literally, no worries. There is, then, no harm in death. Second is that with death the “atoms of the soul” — even for those who believe in Soul — are scattered, depart, go elsewhere, vacation; thus there are no sensations of the body and mind and soul. It’s the eternal disconnect, the cell phone battery dies for the last time, you do not have your cord for recharging it. Fini. With no sensations there can be no pains. Again, no harm in death.
Does this sound flippant? I want to stress though that if there is no sentient being left and there are no sensations within the body, then there is no worry, no fear, and no pain. Some might want to argue for a state of bliss, explained with various psychological need reasons; my point, however, and this is meant as comfort to everyone here, even the good old fashioned materialists (myself included in both groups), that there is no reason to fear it. To fear It, very large “I.” It is simply nothing, no-thing, no-experience, no-phenomenon, and thus cannot harm us in any way. In coldly logical terms, the Epicurean “Key Doctrine” puts it like this:
“Death is nothing to us; for what is disperses does not perceive, and what does not perceive is nothing to us” (qtd in Warren 17).
Moving on to my observations about the mine and yours of fear: What’s above forms the backdrop logic that made me point out the dialectical chronological nature of fear, based on its being Self or Other centered — that becomes more paramount, it seems, because while I am sentient and feel so much physically the chance for fear is greatly increased. Thus fear number four was / is perhaps the most daunting. The rest, I spit on them. Two and three I feel I’ve already gone through, and fear number one is simply too much of a void to be comprehended. Fairy tales, scary movies, irrational fears, curses, anthropomorphic fates, harpies, ghosts, and gods — it’s all part of the same stuff. And the Other-based fear, while existing now too, truly takes hold when the reality of the situation sets in, when the physical nature of things changes so that my person, my “I,” is gone and there’s nothing left but narrative, knick knacks, and memory.
Someone in a private email even pointed out an unexpected upside to “the knowing” (i.e., of premature death, related to fear #3) which is having the time, at least theoretically, to say what you want and do what you want before you go. This is only partly correct; I’ve tried to convey this before but until you actually find yourself in this position the mere imagining of it is rather vague and incomprehensible. Some comforts might be had, but there are also an unyielding anxiety and pressure that come with the erasure of fear three (not knowing when you’ll die). Difficult sleeping each night as symptom of this. Recently I gave words to that: I am so bone tired today all I want to do is go over there, lie down, forget in sleep, but there is no forgetting, and if I do it, that just means one less night to sleep, one less time to close the books and turn out the lights. A genuinely melancholy thought. Thanks to the emailer, but too, please try to see both sides at least, or even the third, since there are always at least three sides to every story. (Right, Frank?)
I’ll offer the most forceful counter-argument myself, to save time: it hinges on belief in post mortem consciousness. Just like all of Christianity or Islam hinge on a conscious choice of faith (Abraham, Isaac, Kierkegaard). The edifice of the argument stands or falls on that, a cornerstone, regardless of how rigorously logical the system might be qua (closed) total system. For this author, then, no p.m. consciousness, ergo, no fear, no pain.
For those who are really engaged in this practice of thinking through the problem, and those who know me already know this, but my favorite and, I think, by far the most profound thinking along these lines (of “life and death” and what it means to do both) is found in the first few pages of Albert Camus’ book The Myth of Sisyphus. I’ve held back from exploring that here, since I thing it would truly push the envelope. Still hold back.
Sunday, July 23, 2006
7.23.06, Fear of Death, Pt. 1 Breaking It Down
“Fear of Death”
[If I get high enough I can push the pain away, just a thought I had.]
One’s first thought of death is fear. One gets scared, of necessity. For numerous reasons, too deep to delve today, fear of death has been carefully, complexly, and socially constructed for millennia; very sophisticated and plausible (for many) systems of belief have been established to assuage this fear. As if it were hardwired into our thinking. But. One critical question, from a genuinely open mind, cuts to the heart of it all: what is it we’re afraid of? Why fear death?
Among the books I’ve found on death, some of which I noted and commented on earlier, perhaps the best of them has been Facing Death: Epicurus and His Critics, by James Warren. It's genuinely insightful, a dry but very good book. Epicurus worked out logical reasons for fearing death, or rather for why we should not fear death, based on extrapolations from common questions about what we might fear about death. They fall into that oddly mystical grouping of “four” — have you ever noticed these groups of four? Buddhism’s noble truths; the Biblical heart-might-mind-strength; four Christian gospels; the Mormon Temple ceremony (don’t worry I won’t let out any secrets) has four big lessons to learn, four covenants you enter into, four signs, four tokens of these signs; etc.
When facing death one’s primary task is to determine what is the fear of death, and then realize that is not a singular but rather complex fear that is generalized when we speak of it. Epicurus’ analysis brings him to see four types of fear concerning death (these are summarized from Warren):
1 – The fear of being dead.
2 – The fear that one will die, that one’s life is going to end.
3 – The fear of premature death.
4 – The fear of the process of dying.
So the commonplace “fear of death” is more accurately composed of, potentially, four more specific fears. Number one and number two don’t seem to be issues for me. The possibility of experiencing number three has been pulled out from under me. At the end of March, early April the diagnosis I was given made turned my world upside down. I think that fear number three is one you experience while going through the process of “normal” life, while in the back of your mind you also assume that you’ll live another 30 years. What you fear is that someday someone, some doctor, will walk into the exam room and tell you what Dr. Whiting told me. Since it’s already happened, no more fear.
That leaves number four. This one does frighten me, what can I say? Even if they tell you “We will do everything in our power to make sure you are totally free from pain in this process.” There’s that word, “process,” even they used it. Euphemism for “dying.” Perhaps the pain can be avoided. But what of people? Will we be closer, split apart, fight, simply drift, bond tightly, what? What of my cats? It looks like, now, they will outlive me. The job, I guess it just goes away. The… the… and so on. You can see what the thinking is like. When you know the egg timer will buzz and you’re supposed to go on puttering around the kitchen pretending it’s not there. Is that what you do? You can also see the whole “process” is odd, unexpected, surprising, and taxing. That’s the fear to analyze further.
Along these lines, I’ve realized already how the nature of this “fear,” singular for shorthand but referring to all four as “fear of death,” is really of a dual or even dialectical nature. There is my fear and then others’ fear. These can be distinguished chronologically: I can experience fear in the time between now and when I die; after that, it’s time for the fear of others takes over. True, others can fear it now also, but the personal fear lasts only a short time, then I’m done; the collective or other fear has the quality of possibly existing now but really kicking in once I die. When others see me, despite what they know about my disease, my appearance largely deceives them. So the fear is allayed somewhat. That later time, when it kicks in. (I’m prognosticating here…) It might turn to memory, remorse, fondness (I can hope), relief, trauma, or a myriad of other feelings. I think the moment of my death, particularly clearly, marks off the difference in whose fear has primacy.
This fear analysis has made a lot of sense to me; and the self / other divide is what developed in my mind very soon after I was given my prognosis and began seeing people’s reactions. At times even those closest to me have surprised me, some times in the extreme, often subtly. Some have been rock solid, on the outside at least. The devoutly religious, for whom there should theoretically be little to no fear, have demonstrated the profoundly human side of their nature. I don’t know what any of this really means, whether there are conclusions to be drawn, snappy closers to be tacked on. All I know is there is ineluctable movement, and we all exist within it.
Here would be a nice place for a poignant line of poetry to cap it all off, instead, I’m just stuck. . . in the movement, in the analysis of fears, in thinking through it, feeling through it. No big answers for this day. Any brilliant thoughts?
Franky Scale: 6-7, up higher but with the heat and some poor pain management on my part earlier, took a wee dive.
[If I get high enough I can push the pain away, just a thought I had.]
One’s first thought of death is fear. One gets scared, of necessity. For numerous reasons, too deep to delve today, fear of death has been carefully, complexly, and socially constructed for millennia; very sophisticated and plausible (for many) systems of belief have been established to assuage this fear. As if it were hardwired into our thinking. But. One critical question, from a genuinely open mind, cuts to the heart of it all: what is it we’re afraid of? Why fear death?
Among the books I’ve found on death, some of which I noted and commented on earlier, perhaps the best of them has been Facing Death: Epicurus and His Critics, by James Warren. It's genuinely insightful, a dry but very good book. Epicurus worked out logical reasons for fearing death, or rather for why we should not fear death, based on extrapolations from common questions about what we might fear about death. They fall into that oddly mystical grouping of “four” — have you ever noticed these groups of four? Buddhism’s noble truths; the Biblical heart-might-mind-strength; four Christian gospels; the Mormon Temple ceremony (don’t worry I won’t let out any secrets) has four big lessons to learn, four covenants you enter into, four signs, four tokens of these signs; etc.
When facing death one’s primary task is to determine what is the fear of death, and then realize that is not a singular but rather complex fear that is generalized when we speak of it. Epicurus’ analysis brings him to see four types of fear concerning death (these are summarized from Warren):
1 – The fear of being dead.
2 – The fear that one will die, that one’s life is going to end.
3 – The fear of premature death.
4 – The fear of the process of dying.
So the commonplace “fear of death” is more accurately composed of, potentially, four more specific fears. Number one and number two don’t seem to be issues for me. The possibility of experiencing number three has been pulled out from under me. At the end of March, early April the diagnosis I was given made turned my world upside down. I think that fear number three is one you experience while going through the process of “normal” life, while in the back of your mind you also assume that you’ll live another 30 years. What you fear is that someday someone, some doctor, will walk into the exam room and tell you what Dr. Whiting told me. Since it’s already happened, no more fear.
That leaves number four. This one does frighten me, what can I say? Even if they tell you “We will do everything in our power to make sure you are totally free from pain in this process.” There’s that word, “process,” even they used it. Euphemism for “dying.” Perhaps the pain can be avoided. But what of people? Will we be closer, split apart, fight, simply drift, bond tightly, what? What of my cats? It looks like, now, they will outlive me. The job, I guess it just goes away. The… the… and so on. You can see what the thinking is like. When you know the egg timer will buzz and you’re supposed to go on puttering around the kitchen pretending it’s not there. Is that what you do? You can also see the whole “process” is odd, unexpected, surprising, and taxing. That’s the fear to analyze further.
Along these lines, I’ve realized already how the nature of this “fear,” singular for shorthand but referring to all four as “fear of death,” is really of a dual or even dialectical nature. There is my fear and then others’ fear. These can be distinguished chronologically: I can experience fear in the time between now and when I die; after that, it’s time for the fear of others takes over. True, others can fear it now also, but the personal fear lasts only a short time, then I’m done; the collective or other fear has the quality of possibly existing now but really kicking in once I die. When others see me, despite what they know about my disease, my appearance largely deceives them. So the fear is allayed somewhat. That later time, when it kicks in. (I’m prognosticating here…) It might turn to memory, remorse, fondness (I can hope), relief, trauma, or a myriad of other feelings. I think the moment of my death, particularly clearly, marks off the difference in whose fear has primacy.
This fear analysis has made a lot of sense to me; and the self / other divide is what developed in my mind very soon after I was given my prognosis and began seeing people’s reactions. At times even those closest to me have surprised me, some times in the extreme, often subtly. Some have been rock solid, on the outside at least. The devoutly religious, for whom there should theoretically be little to no fear, have demonstrated the profoundly human side of their nature. I don’t know what any of this really means, whether there are conclusions to be drawn, snappy closers to be tacked on. All I know is there is ineluctable movement, and we all exist within it.
Here would be a nice place for a poignant line of poetry to cap it all off, instead, I’m just stuck. . . in the movement, in the analysis of fears, in thinking through it, feeling through it. No big answers for this day. Any brilliant thoughts?
Franky Scale: 6-7, up higher but with the heat and some poor pain management on my part earlier, took a wee dive.
Saturday, July 22, 2006
7.22.06, Brief Indecision
Walked into the kitchen, which is still shaded out because of yesterday's heat — and what they say will come today as well, and took a left turn, walked about ten feet to the far wall where I stood facing the sink, coffee maker, coffee grinder, rice maker, dish rack. For a brief moment I thought about what Frank asked me once, or I thought rather the object of his question, at what point when you get up every morning do you think "Ah, fucking cancer"? Today I woke up and it was already woven into my thoughts from the left turn, the ten feet, the facing of the morning machines.
Cancer, cancer, schedule, calendar, how long, tasks, limited range of drugs, more cancer, less calendar . . . for a moment that's all I thought, not consciously but still that's what I woke up with. Then it hit me, "It's simple. Just make coffee. That is clearly the answer to everything." Just like in Home for the Holidays when Holly Hunter and Anne Bancroft are together talking family shit in the kitchen at 3 in the morning, what does mom do? She puts on a pot of coffee. Every morning, then, too, that's got to be the same answer. It's Pascalian, ". . . kneel and move your lips as if you believe. . .", the exact same behaviorist principle. You'd be surprised at how much of life's routine will simply automatically begin its motion, just start to move by itself, once the beans are ground, cold water filled in, and the switch flipped. It all starts. It's all about making coffee.
This is how the terminal psychology seems to work, if I am in any way representative: News from the restaging wasn't really news in the sense it was information I was waiting for but already knew, information I knew would be coming at some point; the only remaining question was precisely "when will it come?" "when does the cancer pick up and start to move again?" Those are the basic stakes, point being that it shouldn't have come as much of a surprise. But the last restaging brought unexpected good news, and so this week, we, I at least, thought "Hey, maybe we'll have one more piece of good news. Just one more."
The pychology: You receive the shittiest news, you absorb and process it, then you begin to live your new life with this knowledge. The infinite amount of time ahead of you, the juggling of projects within the mind indefinitely, the procrastination with little consequence, and simlpy taking every day for granted and people for granted and the concept of "tomorrow" for granted, all of that is wrenched up, turned over or around, and slammed down in some disfigured form. You still have to make use of it, just that now this thing, it is misshapen and unfamiliar almost. Now, the restaging restarts the whole process, but you've been through it once before so that this version is not quite so baffling, the tunnel vision, heavy crushing feeling descending on your skull, the inexplicably loud heartbeat, and the gradually collapsing vision of the whole room around you — all this happens again but not so severely. This time you know it won't beat you, you're not actually worried you'll pass out and wake when head cracks against the exam room white linoleum floor. This time there's more anger than surprise. This time you're faced with how cancer doesn't give two squirts of piss about 8 weeks of rest or healing, it will move on. This is all just to inform you. An expensive way to inform you. You've been playing on your winnings already. One message. Your winnings are about gone. Second message.
Cancer, cancer, schedule, calendar, how long, tasks, limited range of drugs, more cancer, less calendar . . . for a moment that's all I thought, not consciously but still that's what I woke up with. Then it hit me, "It's simple. Just make coffee. That is clearly the answer to everything." Just like in Home for the Holidays when Holly Hunter and Anne Bancroft are together talking family shit in the kitchen at 3 in the morning, what does mom do? She puts on a pot of coffee. Every morning, then, too, that's got to be the same answer. It's Pascalian, ". . . kneel and move your lips as if you believe. . .", the exact same behaviorist principle. You'd be surprised at how much of life's routine will simply automatically begin its motion, just start to move by itself, once the beans are ground, cold water filled in, and the switch flipped. It all starts. It's all about making coffee.
This is how the terminal psychology seems to work, if I am in any way representative: News from the restaging wasn't really news in the sense it was information I was waiting for but already knew, information I knew would be coming at some point; the only remaining question was precisely "when will it come?" "when does the cancer pick up and start to move again?" Those are the basic stakes, point being that it shouldn't have come as much of a surprise. But the last restaging brought unexpected good news, and so this week, we, I at least, thought "Hey, maybe we'll have one more piece of good news. Just one more."
The pychology: You receive the shittiest news, you absorb and process it, then you begin to live your new life with this knowledge. The infinite amount of time ahead of you, the juggling of projects within the mind indefinitely, the procrastination with little consequence, and simlpy taking every day for granted and people for granted and the concept of "tomorrow" for granted, all of that is wrenched up, turned over or around, and slammed down in some disfigured form. You still have to make use of it, just that now this thing, it is misshapen and unfamiliar almost. Now, the restaging restarts the whole process, but you've been through it once before so that this version is not quite so baffling, the tunnel vision, heavy crushing feeling descending on your skull, the inexplicably loud heartbeat, and the gradually collapsing vision of the whole room around you — all this happens again but not so severely. This time you know it won't beat you, you're not actually worried you'll pass out and wake when head cracks against the exam room white linoleum floor. This time there's more anger than surprise. This time you're faced with how cancer doesn't give two squirts of piss about 8 weeks of rest or healing, it will move on. This is all just to inform you. An expensive way to inform you. You've been playing on your winnings already. One message. Your winnings are about gone. Second message.
Friday, July 21, 2006
7.21.06, Stifling Heat and Schedule
More lyrical ways to say it must exist somewhere, sometime not now, but today I'm mainly pissed off and disappointed. The heat is also pretty good, which in another city would be all right but this is a town with almost no AC. Ninety-six degrees here translates into 110 or so where heat is the norm. Enough to slow you down, and I feel like I already have enough to do that. People cross the streets in slow motion, until they border shade, then slink in and walk there, skirting buildings courting shade. Sitting on the second floor of Caffe Vita, only one other soul will dare the second floor, where there is a bank of windows to possibly help you air out, a hint of breeze, maybe just now and then. Iced coffee, another small comfort. Today's air, though, is metaphorically heavy, of the worst kind, or most effective kind of metaphor where the the reality and what is suggested, the vehicle and the tenor shall we say, are both concrete and slip within and without each other. Not just oppressive heat, but oppressive news about my future and fucking harsh heat to boot, not only literary.
There's not a hell of a lot to be done about yesterday, on the other hand, about the news that this schedule is inflexible. The news will not cool off in two days to a pleasant "high of 70." My calendar, "mine" I say, and shedule will not be moving for anyone — or rather it will keep moving and you can either come along, or you can come along. Some choice. Rather, it moves and I can follow along, or follow along. It's not even somebody else's schedule that feels stifling today, it's my own, asked for or not, this ineluctable movement across time, into the dark.
Feeling depressed today, that might be the gist of it, probably a more legitimate use of that word to describe a psychological state than most ever else. (Please no over-reaction, worry, or the like, it's perfectly natural and healthy to feel shitty with bad news, it is not cause for any alarm.) To top it off, I missed my head shrinking today too, ten a.m. and I wasn’t there. Slept through it, missed it, didn’t even fucking come to my mind until about 10:20 when Sylvie (Melfi, whatever) called and tried to shrink me over the phone for about 15 minutes or so. For some reason, she recommended I read Jeffrey Eugenides, just "Jeff Somebody" at first, “the author of The Virgin Suicides,” at the title of which I couldn't recall who she meant, but then Middlesex was mentioned and I got her the name. My odd chemo brain function, and odd reading cartography. And so it goes. She did mention, however — and even though she's supposed to be shrinking me — that she's in search of a metaphor. Hmph. I've got a metaphor.
Sam, the Building Man, brought up to my door my chemo drugs, arrived in the mail in their oversized FedEx box — kind of red, white, and blue, or white, blue, and oragne-red — oversized like to say "Hey, Really Important!" but who the hell knows when they arrived? All I know is they came with his knocking on my door well before I'd had my coffee. Yesterday was their due date, so they might have come and sat in his little work room down in the basement the whole time. The basement and room where they film Saw. But I did get them in the end, which is what matters — the drugs that my body, fuck it, not my body — it's the cancer that’s in my body that has started to resist. Resistent, progressive, disease, you can have a progressive disease which you don't want, unlike politics. Stay away from conservative, but here in the medical world.
In my excessively good mood then, I'm going to give a couple of awards, let's call them something artful, let' say, the Pile of Shit award. If you win, you get a pile of shit. First one goes to Condy Rice (Condi?) and the unbelievable anti-reason and anti-humanitarian approach with which she is so dutifully towing the conservative political line. No cease-fire, etc. You go, Condy. Second Pile of Shit award goes to a hometown boy, Michael Leavitt, former Utah Governor, current Health and Human Services monkey boy, and now scandal center. Did you know that he and his family have been getting tax write-off's for millions and millions for all their "charity donations"? Great, huh? (Just like Gates, I'll save him for another time...) Funny thing is that for the past three or four years of the lovely Leavitt family charity, they haven't given anything away! It's brilliant. Except that the Washington Post exposed them today. It cracks me up. Millions of dollars you "give" to your own charity, which then doesn't give charity to anyone. Their actual give-out rate was less than 1% of all the money put in for three consecutive years, they give loans to Leavitt's "business" interest free, etc. It's good to be king, huh?
I could give another award to pancreatic cancer, but what an empty gesture. I'd do nothing but deliver shit every day then. A waste of time. So, Franky Scale, hm. Physically I feel pretty good, near 7ish and this is the last day of no chemo drugs. Tomorrow morning it begins again. Psychologically, around a 5, just that resignation feeling and it's too soon to be actively in denial or just productively forgetting it all. On the other, there is a dark corner next to an antique coffee roaster downstairs where it might only be 90 or even 87, where I might slip, go and hold on to each slow moment passing, reading Carlos Fuentes' Terra Nostra, not Eugenides, and for some time substituting that world for this.
There's not a hell of a lot to be done about yesterday, on the other hand, about the news that this schedule is inflexible. The news will not cool off in two days to a pleasant "high of 70." My calendar, "mine" I say, and shedule will not be moving for anyone — or rather it will keep moving and you can either come along, or you can come along. Some choice. Rather, it moves and I can follow along, or follow along. It's not even somebody else's schedule that feels stifling today, it's my own, asked for or not, this ineluctable movement across time, into the dark.
Feeling depressed today, that might be the gist of it, probably a more legitimate use of that word to describe a psychological state than most ever else. (Please no over-reaction, worry, or the like, it's perfectly natural and healthy to feel shitty with bad news, it is not cause for any alarm.) To top it off, I missed my head shrinking today too, ten a.m. and I wasn’t there. Slept through it, missed it, didn’t even fucking come to my mind until about 10:20 when Sylvie (Melfi, whatever) called and tried to shrink me over the phone for about 15 minutes or so. For some reason, she recommended I read Jeffrey Eugenides, just "Jeff Somebody" at first, “the author of The Virgin Suicides,” at the title of which I couldn't recall who she meant, but then Middlesex was mentioned and I got her the name. My odd chemo brain function, and odd reading cartography. And so it goes. She did mention, however — and even though she's supposed to be shrinking me — that she's in search of a metaphor. Hmph. I've got a metaphor.
Sam, the Building Man, brought up to my door my chemo drugs, arrived in the mail in their oversized FedEx box — kind of red, white, and blue, or white, blue, and oragne-red — oversized like to say "Hey, Really Important!" but who the hell knows when they arrived? All I know is they came with his knocking on my door well before I'd had my coffee. Yesterday was their due date, so they might have come and sat in his little work room down in the basement the whole time. The basement and room where they film Saw. But I did get them in the end, which is what matters — the drugs that my body, fuck it, not my body — it's the cancer that’s in my body that has started to resist. Resistent, progressive, disease, you can have a progressive disease which you don't want, unlike politics. Stay away from conservative, but here in the medical world.
In my excessively good mood then, I'm going to give a couple of awards, let's call them something artful, let' say, the Pile of Shit award. If you win, you get a pile of shit. First one goes to Condy Rice (Condi?) and the unbelievable anti-reason and anti-humanitarian approach with which she is so dutifully towing the conservative political line. No cease-fire, etc. You go, Condy. Second Pile of Shit award goes to a hometown boy, Michael Leavitt, former Utah Governor, current Health and Human Services monkey boy, and now scandal center. Did you know that he and his family have been getting tax write-off's for millions and millions for all their "charity donations"? Great, huh? (Just like Gates, I'll save him for another time...) Funny thing is that for the past three or four years of the lovely Leavitt family charity, they haven't given anything away! It's brilliant. Except that the Washington Post exposed them today. It cracks me up. Millions of dollars you "give" to your own charity, which then doesn't give charity to anyone. Their actual give-out rate was less than 1% of all the money put in for three consecutive years, they give loans to Leavitt's "business" interest free, etc. It's good to be king, huh?
I could give another award to pancreatic cancer, but what an empty gesture. I'd do nothing but deliver shit every day then. A waste of time. So, Franky Scale, hm. Physically I feel pretty good, near 7ish and this is the last day of no chemo drugs. Tomorrow morning it begins again. Psychologically, around a 5, just that resignation feeling and it's too soon to be actively in denial or just productively forgetting it all. On the other, there is a dark corner next to an antique coffee roaster downstairs where it might only be 90 or even 87, where I might slip, go and hold on to each slow moment passing, reading Carlos Fuentes' Terra Nostra, not Eugenides, and for some time substituting that world for this.
Thursday, July 20, 2006
7.20.06, Restaging #2: Results
“What we know?”
Based on eight (8) weeks of continued GTX treatment and general clean living ☺, some of my cancer is growing / spreading, in what are called “heterogeneous tumors”; some remains stable. Overall, the big picture result is a “mixed response”; the best-case description could be calling it a “stable disease” because the growth is on the minimal side. The more serious description would be “partial progression.” Another option — fortunately not one that applies today — would be when you have growth by 20%, then it would be labeled as “clearly progressive.” So to borrow a title I’ve used once for a post already, “it could be worse.”
[Again, if anyone wants to get in touch, for today at least, please just send email. I'll likely ignore my phone. -Mr. J]
That is information I already had, i.e. the terminal aspect which this emphasizes, but the past eight weeks with no major catastrophes apparently have bred a sense of contentment, if that is possible. If I’m not shitting blood and puking up all day, heavy sweats, pain, hallucinations, then I’m doing OK, seems to be what happened. It’s never been that bad, and the conscious / unconscious mind will do what they must. So today was a reminder: don’t get cocky, keep your eyes wide open, finish up all your paperwork, & put on clean underwear.
In plainest English: we could have heard today that my disease is better, stable, or worse. It’s worse. Nothing divides perfectly into two or three options like that, but to put it very directly. We quoted Furio once before didn’t we, “Cancer don’t respect nothing.” It just won’t go away.
“How we know?”
There are three main pieces of evidence, three visible changes to support the “mixed response” conclusion; that is, they show the cancer has begun to grow despite the GTX therapy.
1. The original tumor in my pancreas has grown again, by 4 mm. (Their margin of error when they “take the pictures” is 2.5 mm, actually, so we could quibble and debate, and a serious Glass-Half-Fuller might say it could only “really” be 1.5 mm of new growth, etc.)
2. Of the liver tumors, one pre-existing tumor grew from 12 to 18 mm. The rest were stable.
3. There is one new tumor in the liver, of about 6 mm.
There’s your “mixed”; the other pre-existing liver tumors are the same and my lungs look the same as before.
“What will I do? What are the options?”
These questions could be answered or discussed exhaustively and you’d have a 20-page post. So I’ll spare you all the options & deliberations and put it in short form. I’m going to continue with the GTX regimen for six weeks, then restage again. The disease progress hasn’t been great, quality of life has been pretty good, so GTX might help for a while. Next restaging, do it all again.
There are only so many FDA-approved drugs out there for pancreatic cancer, and today I learned my cancer is beginning its rebellion against some part of the GTX group, administered in that order (the order is important, as shown in a study by Dr. Robert Fine at the Columbia Medical Ctr, I could post a link to a video of his presentation on this, in which positive results seem to be had by changing the order of those three drugs: remember, G = gemcitabine, T = taxotere, X = xeloda). Dr. Fine did some pioneering work with GTX, so he’s one we’re watching. My doctor, Whiting, is going to check with Fine to get more details on the results of the order-switching studies; then there is a chance I might try that as well.
Once the cancer outsmarts the current three drugs; we can line up three more, or a combination of two more, and try that. That’s the next treatment phase. Sad but true, the cancer will outsmart those at some point also; at that point, I can jump into an early-phase trial and test experimental drugs. Entering a trial study for treatment would be the third phase. Some time might be bought. Frankly speaking, however, I need to finish my living will, powers of atty, will, etc. before that time.
If I had to use only one word to describe today, it would be — sobering. More words, angering, frustrating, fucked up, sad. You choose.
Thanks to Ted for coming along today, taking notes, being there. And thanks to rest of you who have been supportive, you know who you are so I won’t make a list.
In a sense, we already knew this, right? It's the same news, just a reminder, that the egg timer is still going, or rather, the reminder is that it is an egg timer, not a Seiko perpetual calendar watch.
[below, left overs from my first "wait a bit" post...]
I just got back from the doctor's, results are in. It will take me some time to call and talk to my mom and then to type up some cohesive and balanced report of how things went — please be patient. All family, please hold on and either get news from her or wait till I post it here.
Also, all of you who have called or texted, you're great, all the positive vibes are well received. In light of potential phone insanity, however, if I could ask everyone to please hold off on both calling and texting that would be a big help to me right today. I need time to get this down, and then posted, then a little wind-down time would be nice. My request is not so much a reflection of the results, just that restaging day causes lots of anticipation, you know. Please email if you want to get in touch.
The Results: yes, it's really cancer; and yes, even though things seemed to have gone well for 8 weeks or so, it is terminal. Same scenario.
Specifically, mine is what they call a "mixed response." That is, some stability of the cancer, some growth of the cancer, depending on the location. Of course, appropriately the harsh reality that we don't always get simple "black" or "white" answers. Mixed response. The growth was not really aggressive, which is the best news; however the bad news is that some of the cancer is already responding against this type of chemo (in other words, all growth is bad). I'll explain it all later today. Patience.
Based on eight (8) weeks of continued GTX treatment and general clean living ☺, some of my cancer is growing / spreading, in what are called “heterogeneous tumors”; some remains stable. Overall, the big picture result is a “mixed response”; the best-case description could be calling it a “stable disease” because the growth is on the minimal side. The more serious description would be “partial progression.” Another option — fortunately not one that applies today — would be when you have growth by 20%, then it would be labeled as “clearly progressive.” So to borrow a title I’ve used once for a post already, “it could be worse.”
[Again, if anyone wants to get in touch, for today at least, please just send email. I'll likely ignore my phone. -Mr. J]
That is information I already had, i.e. the terminal aspect which this emphasizes, but the past eight weeks with no major catastrophes apparently have bred a sense of contentment, if that is possible. If I’m not shitting blood and puking up all day, heavy sweats, pain, hallucinations, then I’m doing OK, seems to be what happened. It’s never been that bad, and the conscious / unconscious mind will do what they must. So today was a reminder: don’t get cocky, keep your eyes wide open, finish up all your paperwork, & put on clean underwear.
In plainest English: we could have heard today that my disease is better, stable, or worse. It’s worse. Nothing divides perfectly into two or three options like that, but to put it very directly. We quoted Furio once before didn’t we, “Cancer don’t respect nothing.” It just won’t go away.
“How we know?”
There are three main pieces of evidence, three visible changes to support the “mixed response” conclusion; that is, they show the cancer has begun to grow despite the GTX therapy.
1. The original tumor in my pancreas has grown again, by 4 mm. (Their margin of error when they “take the pictures” is 2.5 mm, actually, so we could quibble and debate, and a serious Glass-Half-Fuller might say it could only “really” be 1.5 mm of new growth, etc.)
2. Of the liver tumors, one pre-existing tumor grew from 12 to 18 mm. The rest were stable.
3. There is one new tumor in the liver, of about 6 mm.
There’s your “mixed”; the other pre-existing liver tumors are the same and my lungs look the same as before.
“What will I do? What are the options?”
These questions could be answered or discussed exhaustively and you’d have a 20-page post. So I’ll spare you all the options & deliberations and put it in short form. I’m going to continue with the GTX regimen for six weeks, then restage again. The disease progress hasn’t been great, quality of life has been pretty good, so GTX might help for a while. Next restaging, do it all again.
There are only so many FDA-approved drugs out there for pancreatic cancer, and today I learned my cancer is beginning its rebellion against some part of the GTX group, administered in that order (the order is important, as shown in a study by Dr. Robert Fine at the Columbia Medical Ctr, I could post a link to a video of his presentation on this, in which positive results seem to be had by changing the order of those three drugs: remember, G = gemcitabine, T = taxotere, X = xeloda). Dr. Fine did some pioneering work with GTX, so he’s one we’re watching. My doctor, Whiting, is going to check with Fine to get more details on the results of the order-switching studies; then there is a chance I might try that as well.
Once the cancer outsmarts the current three drugs; we can line up three more, or a combination of two more, and try that. That’s the next treatment phase. Sad but true, the cancer will outsmart those at some point also; at that point, I can jump into an early-phase trial and test experimental drugs. Entering a trial study for treatment would be the third phase. Some time might be bought. Frankly speaking, however, I need to finish my living will, powers of atty, will, etc. before that time.
If I had to use only one word to describe today, it would be — sobering. More words, angering, frustrating, fucked up, sad. You choose.
Thanks to Ted for coming along today, taking notes, being there. And thanks to rest of you who have been supportive, you know who you are so I won’t make a list.
In a sense, we already knew this, right? It's the same news, just a reminder, that the egg timer is still going, or rather, the reminder is that it is an egg timer, not a Seiko perpetual calendar watch.
[below, left overs from my first "wait a bit" post...]
I just got back from the doctor's, results are in. It will take me some time to call and talk to my mom and then to type up some cohesive and balanced report of how things went — please be patient. All family, please hold on and either get news from her or wait till I post it here.
Also, all of you who have called or texted, you're great, all the positive vibes are well received. In light of potential phone insanity, however, if I could ask everyone to please hold off on both calling and texting that would be a big help to me right today. I need time to get this down, and then posted, then a little wind-down time would be nice. My request is not so much a reflection of the results, just that restaging day causes lots of anticipation, you know. Please email if you want to get in touch.
The Results: yes, it's really cancer; and yes, even though things seemed to have gone well for 8 weeks or so, it is terminal. Same scenario.
Specifically, mine is what they call a "mixed response." That is, some stability of the cancer, some growth of the cancer, depending on the location. Of course, appropriately the harsh reality that we don't always get simple "black" or "white" answers. Mixed response. The growth was not really aggressive, which is the best news; however the bad news is that some of the cancer is already responding against this type of chemo (in other words, all growth is bad). I'll explain it all later today. Patience.
7.20.06, Restaging #2: The Big Turn?
First, let me offer a sincere thank you for all the supportive, insightful, and real comments. Curious to note, also, that subgenre of comment we might call "benefit of the doubt" posts. Overall, it's clear how these themes hit home for so many. This was helpful for me to re-address and re-settle the matter, I hope we keep up the discussion.
I'm going to withhold a Franky Scale report for a while, since it's still that early stage of day when I'm wiping sleep (rather fitful and not deep at any point) from my eyes and working to get caffeinated. For now I wanted to prepare for whatever will be posted later, after the restaging.
It may or may not be a "big turn" today at my meeting with Dr. Whiting, my oncologist. There are the most obvious options for outcome: worse, better, no visible change. However, based on the CA 19-9 numbers I've been reading for the past, what, three cycles of chemotherapy (or about 9 weeks) I'm secretly expecting better news than not. To recap, the so-called cancer marker, the CA 19-9 number, has gone down every time it's been measured. When I started chemotherapy in April my number was something like 12,700; by last measure it was 5790. I'm told that although the absolute reduction of more than 50% seems impressive but for the doctors it doesn't say as much as the simple fact that the number itself has gone down each time by whatever increment.
At one point this week I was thinking through the possibility of bad news. It's supposed to happen at some point, sooner or later; and from what I was told at my last restaging (took place on 18 May 2006, 8 weeks ago) that point of no-more-progress is supposed to arrive in around 6 months or so. That already is an improvement from where I started. I've responded well to the GTX chemo "regime" (I love when they slip up and use this term, instead of regimen, because it hides nothing of the raw control of my body that is really exercised by all the drugs I let them give me — for a brief moment Ideology pops its head around the corner and grins), and what this means now: I'm collecting some winnings to play on later. I win a couple of one-month chips and slip them into my pocket, hoping, trying to remember whatever I've learned about craps.
The Big Point of my telling you this? I was afraid. Last week, realizing that since nobody has come back from where I am now — in terms of stage IV pancreatic cancer — the real question to address is "When will it turn?", I felt some premature sadness about it. Will it be today? I doubt it, but who really knows? Then if I do win a few more chips today, what's the best strategy for keeping them? I'm chained to the table, every day I throw the dice.
"Big Turn" as I used in the subject/title line today is probably hyperbole. Maybe it's too early for such "big" events. So, let's hope it is hyperbole, and I'll report back in the afternoon when it's all done.
I'm going to withhold a Franky Scale report for a while, since it's still that early stage of day when I'm wiping sleep (rather fitful and not deep at any point) from my eyes and working to get caffeinated. For now I wanted to prepare for whatever will be posted later, after the restaging.
It may or may not be a "big turn" today at my meeting with Dr. Whiting, my oncologist. There are the most obvious options for outcome: worse, better, no visible change. However, based on the CA 19-9 numbers I've been reading for the past, what, three cycles of chemotherapy (or about 9 weeks) I'm secretly expecting better news than not. To recap, the so-called cancer marker, the CA 19-9 number, has gone down every time it's been measured. When I started chemotherapy in April my number was something like 12,700; by last measure it was 5790. I'm told that although the absolute reduction of more than 50% seems impressive but for the doctors it doesn't say as much as the simple fact that the number itself has gone down each time by whatever increment.
At one point this week I was thinking through the possibility of bad news. It's supposed to happen at some point, sooner or later; and from what I was told at my last restaging (took place on 18 May 2006, 8 weeks ago) that point of no-more-progress is supposed to arrive in around 6 months or so. That already is an improvement from where I started. I've responded well to the GTX chemo "regime" (I love when they slip up and use this term, instead of regimen, because it hides nothing of the raw control of my body that is really exercised by all the drugs I let them give me — for a brief moment Ideology pops its head around the corner and grins), and what this means now: I'm collecting some winnings to play on later. I win a couple of one-month chips and slip them into my pocket, hoping, trying to remember whatever I've learned about craps.
The Big Point of my telling you this? I was afraid. Last week, realizing that since nobody has come back from where I am now — in terms of stage IV pancreatic cancer — the real question to address is "When will it turn?", I felt some premature sadness about it. Will it be today? I doubt it, but who really knows? Then if I do win a few more chips today, what's the best strategy for keeping them? I'm chained to the table, every day I throw the dice.
"Big Turn" as I used in the subject/title line today is probably hyperbole. Maybe it's too early for such "big" events. So, let's hope it is hyperbole, and I'll report back in the afternoon when it's all done.
Tuesday, July 18, 2006
7.18.06, Letter from an Anonymous Father
[note from 7.19.06: Franky Scale, a good 7, I'm not going to post today since there was a substantial post put up late yesterday. Thanks to everyone who posted in support during the last day, more later.
Today I was at the cancer center/hospital for the multiple-pass CT scans, to create images for my restaging which happens tomorrow at 10:30 a.m., till who knows when. I've had four-hour meetings with Dr. Whiting before. Cross your fingers for good results tomorrow, more tumor shrinkage, less cancer, leading to more time. Till then I'm going to be reading Adorno's Minima Moralia, subtitle of which is key, Reflections from Damaged Life.]
“Letter from an Anonymous Father”
[N.B., this is another one of those pour-yourself-a-drink and then-sit-down-to-read kind of posts. It’s as serious as anything posted yet and I will warn some of you that it might be troubling as regards family relationships. For those, like the words Dante read above the Gates of Hell . . .]
* * *
Part 1. Epigraph in Parable
One passage I recall from the Bible is in the book of John, chapter 8. Three verses should give convey the gist:
6. This they said, tempting him, that they might have to accuse him. But Jesus stooped down, and with his finger wrote on the ground, as though he heard them not.
7. So when they continued asking him, he lifted up himself, and said unto them, He that is without sin among you, let him first cast a stone at her.
8. And again he stooped down, and wrote on the ground.
Curious little passage.
* * *
Part 2. A Father’s Letter
Yesterday I received a letter from my dad, here’s the punch line: Because I am a sinner, God has cursed me to die young from pancreatic cancer. How’s that for a nice Howd’ya Do at the end of your day? (Almost makes me want to change my mailbox key.) But the letter was written, I should add, “with great love and anticipation.”
Here is the reasoning. Specifically, my father says that because “not only did I deny the existence of Christ but I also overlooked The Word of Wisdom” (emphasis in original; and the Word of Wisdom is Mormon-speak, as he explains, specifically meaning that I drank alcohol). (My apologies — I guess you should put down that drink now.) Odd choice of words, don’t you think, that I somehow “overlooked” this commandment of the Word of Wisdom; the upshot is that I am guilty of a denial and an overlooking, and either way God has chosen to punish me by giving me pancreatic cancer, the terminal kind. As for the validity of the first claim, who knows but that maybe some of my Christian readers will agree with my father, this is their choice; as for the second and clearly more scientific claim, we all know that most people who drink get pancreatic cancer at my age (38 yrs), right, so how can I blame him? Don’t most of your friends around my age have it? And aren’t most of your friends around my age going to die from it? It is odd that my oncologist a few other doctors think my case is rare. Oh well, for any who wondered at why it's so common with 38-year old men, now you have an explanation and you can stop your wondering. Ask and it shall be given to you.
Of course this letter, in all its embarrassing harshness, is personal, however let me give two reasons I think it’s actually appropriate to share this here. First, some of my closest friends and loved ones, family included, read this regularly. All of you comprise my greatest support in this experience, you’ve fully “been there” for me, in action, and it keeps me going. Second, there might be someone else out there who goes through rough times with a parent while they are suffering from a terminal illness and perhaps this will be of some comfort, make you laugh, or have a good cry. While it’s not a comfortable little story, it’s real, it’s what some people do to other people in their grief. It’s a demonstration of how some people cope with pain and death, or rather, how they fail to cope. Whatever it takes.
I will note, too, that this patriarchal missive also expresses love and concern for me and, to balance out my curse, it even offers me the solution to all my problems. A cure. According to my father, I will be cured if I work at being a good Mormon again. Specifically, if I let the Mormon savior back in my life, immediately, then the “miracle” will come. Here: “It is imperative Scott that you let the SAVIOR back in to your life as soon as possible” so that the miracle can happen (emphasis in original). A comforting thought in my time of grief, it’s already waiting for me. In a nutshell, it’s all spelled out, in the form of a curse and a claim, or perhaps I should say a promise, so that even I couldn't overlook it.
Granted there are small flaws in the letter’s logic. I’ll spare you the examples. It does make you wonder, though. What about all the innocent people in the world who have ever suffered or suffer now? Are they all suffering because they’re sinners (too)? Forget people with terminal illness, what about victims of genocide? Holocaust, East Timor, Rwanda . . .? Another example would be the 9/11 victims — were they all wicked? I know how that hit home for many of us. But, OK, let’s talk about terminal illness, since that’s why we’re here after all: how do I explain the righteous people who get cancer? And what about people who get cancer without ever smoking or drinking? Mm, this gets complicated. (You can all see where the logic leads, the reductio ad absurdum, and in fact every point along the way, is truly absurd.)
The converse is also explicitly spelled out in the letter: in other words, the righteous — don’t know whether you can be righteous if you’re not Mormon, you’d have to ask my father — are blessed accordingly. Just as I am cursed to die of pancreatic cancer at 38 for my sins, the righteous, he offers himself as the example, are blessed with miracles and “[given] a whole new world,” etc. If you are righteous, whatever it is that you dream for, it will be yours, the letter says. A very simple, though not particularly kind, logic.
Despite having felt “past this” and “past him” for years now, I was somewhat surprised when I sat down and read the letter. And I think there might be some healing power in the mysterious blog, or rather in a community of real support, so this is my post for the day.
Surely there are other lessons to learn from this, in time, but I think I have learned the Big Lesson. Be very, very careful what you name your blog: Remember that line from the last stanza of Dylan Thomas’s poem, where the speaker addresses his father and says, “Curse, bless me now. . .”?! What strikes me most now is — since God has already struck me with pancreatic cancer, that is — the power of literary allusion!
When fictions stranger than truth become the truth, how strange.
P.S., Franky Scale: 7. Despite or because.
Today I was at the cancer center/hospital for the multiple-pass CT scans, to create images for my restaging which happens tomorrow at 10:30 a.m., till who knows when. I've had four-hour meetings with Dr. Whiting before. Cross your fingers for good results tomorrow, more tumor shrinkage, less cancer, leading to more time. Till then I'm going to be reading Adorno's Minima Moralia, subtitle of which is key, Reflections from Damaged Life.]
“Letter from an Anonymous Father”
[N.B., this is another one of those pour-yourself-a-drink and then-sit-down-to-read kind of posts. It’s as serious as anything posted yet and I will warn some of you that it might be troubling as regards family relationships. For those, like the words Dante read above the Gates of Hell . . .]
* * *
Part 1. Epigraph in Parable
One passage I recall from the Bible is in the book of John, chapter 8. Three verses should give convey the gist:
6. This they said, tempting him, that they might have to accuse him. But Jesus stooped down, and with his finger wrote on the ground, as though he heard them not.
7. So when they continued asking him, he lifted up himself, and said unto them, He that is without sin among you, let him first cast a stone at her.
8. And again he stooped down, and wrote on the ground.
Curious little passage.
* * *
Part 2. A Father’s Letter
Yesterday I received a letter from my dad, here’s the punch line: Because I am a sinner, God has cursed me to die young from pancreatic cancer. How’s that for a nice Howd’ya Do at the end of your day? (Almost makes me want to change my mailbox key.) But the letter was written, I should add, “with great love and anticipation.”
Here is the reasoning. Specifically, my father says that because “not only did I deny the existence of Christ but I also overlooked The Word of Wisdom” (emphasis in original; and the Word of Wisdom is Mormon-speak, as he explains, specifically meaning that I drank alcohol). (My apologies — I guess you should put down that drink now.) Odd choice of words, don’t you think, that I somehow “overlooked” this commandment of the Word of Wisdom; the upshot is that I am guilty of a denial and an overlooking, and either way God has chosen to punish me by giving me pancreatic cancer, the terminal kind. As for the validity of the first claim, who knows but that maybe some of my Christian readers will agree with my father, this is their choice; as for the second and clearly more scientific claim, we all know that most people who drink get pancreatic cancer at my age (38 yrs), right, so how can I blame him? Don’t most of your friends around my age have it? And aren’t most of your friends around my age going to die from it? It is odd that my oncologist a few other doctors think my case is rare. Oh well, for any who wondered at why it's so common with 38-year old men, now you have an explanation and you can stop your wondering. Ask and it shall be given to you.
Of course this letter, in all its embarrassing harshness, is personal, however let me give two reasons I think it’s actually appropriate to share this here. First, some of my closest friends and loved ones, family included, read this regularly. All of you comprise my greatest support in this experience, you’ve fully “been there” for me, in action, and it keeps me going. Second, there might be someone else out there who goes through rough times with a parent while they are suffering from a terminal illness and perhaps this will be of some comfort, make you laugh, or have a good cry. While it’s not a comfortable little story, it’s real, it’s what some people do to other people in their grief. It’s a demonstration of how some people cope with pain and death, or rather, how they fail to cope. Whatever it takes.
I will note, too, that this patriarchal missive also expresses love and concern for me and, to balance out my curse, it even offers me the solution to all my problems. A cure. According to my father, I will be cured if I work at being a good Mormon again. Specifically, if I let the Mormon savior back in my life, immediately, then the “miracle” will come. Here: “It is imperative Scott that you let the SAVIOR back in to your life as soon as possible” so that the miracle can happen (emphasis in original). A comforting thought in my time of grief, it’s already waiting for me. In a nutshell, it’s all spelled out, in the form of a curse and a claim, or perhaps I should say a promise, so that even I couldn't overlook it.
Granted there are small flaws in the letter’s logic. I’ll spare you the examples. It does make you wonder, though. What about all the innocent people in the world who have ever suffered or suffer now? Are they all suffering because they’re sinners (too)? Forget people with terminal illness, what about victims of genocide? Holocaust, East Timor, Rwanda . . .? Another example would be the 9/11 victims — were they all wicked? I know how that hit home for many of us. But, OK, let’s talk about terminal illness, since that’s why we’re here after all: how do I explain the righteous people who get cancer? And what about people who get cancer without ever smoking or drinking? Mm, this gets complicated. (You can all see where the logic leads, the reductio ad absurdum, and in fact every point along the way, is truly absurd.)
The converse is also explicitly spelled out in the letter: in other words, the righteous — don’t know whether you can be righteous if you’re not Mormon, you’d have to ask my father — are blessed accordingly. Just as I am cursed to die of pancreatic cancer at 38 for my sins, the righteous, he offers himself as the example, are blessed with miracles and “[given] a whole new world,” etc. If you are righteous, whatever it is that you dream for, it will be yours, the letter says. A very simple, though not particularly kind, logic.
Despite having felt “past this” and “past him” for years now, I was somewhat surprised when I sat down and read the letter. And I think there might be some healing power in the mysterious blog, or rather in a community of real support, so this is my post for the day.
Surely there are other lessons to learn from this, in time, but I think I have learned the Big Lesson. Be very, very careful what you name your blog: Remember that line from the last stanza of Dylan Thomas’s poem, where the speaker addresses his father and says, “Curse, bless me now. . .”?! What strikes me most now is — since God has already struck me with pancreatic cancer, that is — the power of literary allusion!
When fictions stranger than truth become the truth, how strange.
P.S., Franky Scale: 7. Despite or because.
Monday, July 17, 2006
7.17.06, Untitled Yet
Franky Scale: 7, as in 7.0 or that area. There's a lot going on today so for now I'm only posting the number; I'll work on getting back here later.
Sunday, July 16, 2006
7.16.05, As the Week
As the week starts, sunshine, I am borrowing space in a large house, in an overstuffed Modernist Chair, an actual divan sits across the room. There would be space if a nap happened. Four cats come in an out. It all brings the Franky Scale to 7; and other numbers. It's 78 in Seattle. Three people in the house to the four cats. Around 4:20 pm, always around 4:20 — when you listen to NPR, too, they always tell you when it's 4:20, has anyone noticed this? (Some kind of silly drug joke they do?)
In case it's of interest, I still have all my hair, but I also notice a case of acne or some similar reaction on my scalp, so that if I do lose my hair I may be spotted like a leopard. My fingers are also experiencing some neuropathy during this week: mostly right hand, mostly greatest at the thumb and then radiating to a lesser degree as you move from the thumb to pinky. There is some left-over nausea though almost none compared to how I usually feel on Thursdays, Fridays, during the active chemo treatments.
I have about seven or ten blog options sitting on my harddrive, all nearly done, drafted, sitting, awaiting attention like on the Island of Misfit Toys. So be it. Today I'm engrossed in an older project dealing with the work of poet Hwang Jiwoo and the aesthetics of commodity fetishism, there's an unexpected theoretical homology between Marxism (especially aesthetic theory as presented in Capital, vol. 1) and the Hwa-yen School of Buddhism. Trust me, it's much to explain, but it's there.
- - -
Here is one of Hwang Jiwoo's poems, from the book Young-jun Lee and I translated, for the hell of it, the poem, that is, called "Temptation" (and this one's copyrighted, please do not cite w/o permission):
"Temptation"
All summer long the glass cages boast a coating of zinnias —
a single hornet enters by mistake
whirs, turns, and buzzes against the screen of glass
beating its steel wings against the illusion
Huh? If that’s the outside, why can’t I get out?
TO LIQUIDATE OPACITY IS ALSO TO NEGATE THE LIQUIDATION OF OPACITY
but I can actually see the outside, can’t I?
huh, gotta try and get to the outside, don’t you?
ah, all I want is to cry — it doesn’t work even dealing with transparency
like that winter, when the blizzard advanced on the all-glass cage
and all I wanted was to strip buck naked and run
to disappear inside the swarm of white bees.
In case it's of interest, I still have all my hair, but I also notice a case of acne or some similar reaction on my scalp, so that if I do lose my hair I may be spotted like a leopard. My fingers are also experiencing some neuropathy during this week: mostly right hand, mostly greatest at the thumb and then radiating to a lesser degree as you move from the thumb to pinky. There is some left-over nausea though almost none compared to how I usually feel on Thursdays, Fridays, during the active chemo treatments.
I have about seven or ten blog options sitting on my harddrive, all nearly done, drafted, sitting, awaiting attention like on the Island of Misfit Toys. So be it. Today I'm engrossed in an older project dealing with the work of poet Hwang Jiwoo and the aesthetics of commodity fetishism, there's an unexpected theoretical homology between Marxism (especially aesthetic theory as presented in Capital, vol. 1) and the Hwa-yen School of Buddhism. Trust me, it's much to explain, but it's there.
- - -
Here is one of Hwang Jiwoo's poems, from the book Young-jun Lee and I translated, for the hell of it, the poem, that is, called "Temptation" (and this one's copyrighted, please do not cite w/o permission):
"Temptation"
All summer long the glass cages boast a coating of zinnias —
a single hornet enters by mistake
whirs, turns, and buzzes against the screen of glass
beating its steel wings against the illusion
Huh? If that’s the outside, why can’t I get out?
TO LIQUIDATE OPACITY IS ALSO TO NEGATE THE LIQUIDATION OF OPACITY
but I can actually see the outside, can’t I?
huh, gotta try and get to the outside, don’t you?
ah, all I want is to cry — it doesn’t work even dealing with transparency
like that winter, when the blizzard advanced on the all-glass cage
and all I wanted was to strip buck naked and run
to disappear inside the swarm of white bees.
Saturday, July 15, 2006
7.15.06, Just Saturday
Nothing going today except good weather and (other) writing. Maybe one small nap too, since last night I was struck with some kind of Ambien-impervious insomnia. Just what I need. For today's Franky Scale at an approx. 6 for now. It's been variable like before, dipping and rising. If anything inspires me after a walk through the neighborhood, I may return, but then again.
Friday, July 14, 2006
7.14.07, "What Defines This Life?" You Ask
*Franky Scale: Why just one? Started about 6, dropped to a 5 for a while till I did some pharmacological adjustment. Ended up close to 7, the day was good, saying good bye to Ms. T over crumpets and books at the Left Bank, then with Mme. X for a dinner of bar food.
*Dearest Prof. Jeong, Yonsei University,
First, I wanted to let you know that this is the right blog. I was so glad to get news of you recently, or more accurately news that my fucked-up news had reached you. And I was moved by and can imagine your reaction. It's been too long since we've seen each other and I hope, as always, only the best for you. I miss being able to drop in and discuss aleatory marxism, Althusser, and modern poetry. Whether the category "lyric" is salvageable let alone salutary . . . figuring out what Hwang Jiwoo is talking about . . . So much there left undiscussed. Also, I'm sorry if the pseudonym threw you off track, my nom de geurre, as it were. For professional reasons I witheld my real name initially and the "Mr. Jones" trope, though I haven't yet discussed its why's and wherefore's, has proven useful in unexpected ways. Let's talk soon, I'll try to email.
*There is a certain clarity I possess, or feel possessed of these days, only occasionally, usually around this hour of twilight — not meant to sound either Romantic or mystical, just noting the phenomenon — so at this time, when the combination of hunger / fullness, pain / nonpain, nausea / calm, etc. settles down below the most obvious level of consciousness, then I feel my fingers freed up (odd metaphor of the keyboard age), and a certain sense of vision accompanies this: not Blakean, or Ginsbergian (after Blake) but more Spinozist, it's almost scientific, that of a lens grinder, someone who is thinking of visual theory at the same time as rhetoric. I hope it combines to produce somthing lucid or pellucid even or even merely reflective of the clarity. Jibberish? Could be. Oxycotton? Could be.
*An Anonymous commentor posted a few questions on the post called "What Cannot be Said" from two days ago; it ran as follows:
"question to consider (or not?)? [a] what if all questions are the wrong questions at this moment? [b] it isn't as simple as what to do with your time; [c] rather, what will you do regardless?
[d] not what to do in the time left, but what would you do anyways, given one week or one year?
[e] what defines the life you have chosen?" [I've added the letters for easier reference.]
The final question #e I can answer with some confidence, what defines a life, whether chosen or fallen into, is always the same it seems: it's action, the practices of everyday life, movement, activity. All the talk and hyperbole, all the promises and the efforts, all the intentions and the apologies, and finally, all the ideals and the general wishes or desires — none of it means more than a passing comment in a dark bar, in the end. Part of a failed seduction. In the middle and the beginning, too, it's nearly meaningless, however, we can more easily kid ourselves, succumb to an ideology that allows us to remain productive. After all is said and done only the book that is published, printed, or passed around and read at least, is the book that counts. All the ideas for other books, all the drafts (in the mind) and sketchy notes, uncompiled notes don't count. The Other ideal profession doesn't count, only the one you actually did. Me, professor, modern Korean literature, poetry, aesthetic theory. Like it or not, that's what defines me, it's where I've come. Most simply put, I can't help but think more and more surely over recent years & especially now, that only what one does is what defines one's life.
As a brief interjection, these questions have all been covered on the blog before. In fact, they're nearly the primary philosophical or psychological reason for starting, for figuring it out. That said, I'm glad they're raised again since revisiting them now and then is always a good idea. Too, things change quickly in the Big Casino. (And too also, it's good to have comments to engage with now and then on the blog.)
Question #d is, to put it rather directly, not relevant. Not anymore, not to me during this period. The meaning of all activity has radically changed for me since I was introduced to terminal cancer, except to the extent that I think of the act / action as described in the paragraph above. To ask what "I" would do "regardless" (#c and #d) of this situaiton means to ignore this situation; one would have to confront it head on and then decide to live in defiance of its reality. I think that's somewhat counterproductive, especially in light of the numerous ephiphanies the experience affords. So much new insight to be had from the 2x4-across-the-head nature of this new knowledge, that not only am I mortal (of course) but that my mortality has been radically foreshortened into a number of months I'm supposed to be able to count on my hands. (The timeline now, based on admittedly less than ideal statistical averages, in fact puts down the number of months like this.) Finally and practically, I probably would not be concerned with writing a memoir currently without the news. Life's obligations would push all that aside.
I suppose the latter two questions addressed would be quite on target for someone at home with eternal recurrence, someone unquestionably not possessed by the notion of "the grass is greener," someone who had made all the "perfect" life choices and was either in unquestionable love with her work or independently wealthy. Wouldn't it be nice — sorry, not be sarcastic toward anyone who's so comfortable in their skin (and / or loaded), it's just never been me.
On #b, looks like I screwed up my numbering.
On #a, I wonder the same frequently: do they need to be asked? The facile Socratic retort doesn't apply I think; and yet if there is ever a time to do perhaps this precisely is the time . . .? One thing for sure, and no one every said I wasn't picky about language, but the logic of "at this moment" does miss the primary fact of what it means to be confronted "prematurely" with death. The Moment becomes This one, for better or worse. The next moment may never come.
And how can I resist the return to aleatory marxism, above, to note again that "the lonely moment of the last instance never comes"? Perhaps it's time for me to reevaluate that proposition in light of my new context . . .
*Dearest Prof. Jeong, Yonsei University,
First, I wanted to let you know that this is the right blog. I was so glad to get news of you recently, or more accurately news that my fucked-up news had reached you. And I was moved by and can imagine your reaction. It's been too long since we've seen each other and I hope, as always, only the best for you. I miss being able to drop in and discuss aleatory marxism, Althusser, and modern poetry. Whether the category "lyric" is salvageable let alone salutary . . . figuring out what Hwang Jiwoo is talking about . . . So much there left undiscussed. Also, I'm sorry if the pseudonym threw you off track, my nom de geurre, as it were. For professional reasons I witheld my real name initially and the "Mr. Jones" trope, though I haven't yet discussed its why's and wherefore's, has proven useful in unexpected ways. Let's talk soon, I'll try to email.
*There is a certain clarity I possess, or feel possessed of these days, only occasionally, usually around this hour of twilight — not meant to sound either Romantic or mystical, just noting the phenomenon — so at this time, when the combination of hunger / fullness, pain / nonpain, nausea / calm, etc. settles down below the most obvious level of consciousness, then I feel my fingers freed up (odd metaphor of the keyboard age), and a certain sense of vision accompanies this: not Blakean, or Ginsbergian (after Blake) but more Spinozist, it's almost scientific, that of a lens grinder, someone who is thinking of visual theory at the same time as rhetoric. I hope it combines to produce somthing lucid or pellucid even or even merely reflective of the clarity. Jibberish? Could be. Oxycotton? Could be.
*An Anonymous commentor posted a few questions on the post called "What Cannot be Said" from two days ago; it ran as follows:
"question to consider (or not?)? [a] what if all questions are the wrong questions at this moment? [b] it isn't as simple as what to do with your time; [c] rather, what will you do regardless?
[d] not what to do in the time left, but what would you do anyways, given one week or one year?
[e] what defines the life you have chosen?" [I've added the letters for easier reference.]
The final question #e I can answer with some confidence, what defines a life, whether chosen or fallen into, is always the same it seems: it's action, the practices of everyday life, movement, activity. All the talk and hyperbole, all the promises and the efforts, all the intentions and the apologies, and finally, all the ideals and the general wishes or desires — none of it means more than a passing comment in a dark bar, in the end. Part of a failed seduction. In the middle and the beginning, too, it's nearly meaningless, however, we can more easily kid ourselves, succumb to an ideology that allows us to remain productive. After all is said and done only the book that is published, printed, or passed around and read at least, is the book that counts. All the ideas for other books, all the drafts (in the mind) and sketchy notes, uncompiled notes don't count. The Other ideal profession doesn't count, only the one you actually did. Me, professor, modern Korean literature, poetry, aesthetic theory. Like it or not, that's what defines me, it's where I've come. Most simply put, I can't help but think more and more surely over recent years & especially now, that only what one does is what defines one's life.
As a brief interjection, these questions have all been covered on the blog before. In fact, they're nearly the primary philosophical or psychological reason for starting, for figuring it out. That said, I'm glad they're raised again since revisiting them now and then is always a good idea. Too, things change quickly in the Big Casino. (And too also, it's good to have comments to engage with now and then on the blog.)
Question #d is, to put it rather directly, not relevant. Not anymore, not to me during this period. The meaning of all activity has radically changed for me since I was introduced to terminal cancer, except to the extent that I think of the act / action as described in the paragraph above. To ask what "I" would do "regardless" (#c and #d) of this situaiton means to ignore this situation; one would have to confront it head on and then decide to live in defiance of its reality. I think that's somewhat counterproductive, especially in light of the numerous ephiphanies the experience affords. So much new insight to be had from the 2x4-across-the-head nature of this new knowledge, that not only am I mortal (of course) but that my mortality has been radically foreshortened into a number of months I'm supposed to be able to count on my hands. (The timeline now, based on admittedly less than ideal statistical averages, in fact puts down the number of months like this.) Finally and practically, I probably would not be concerned with writing a memoir currently without the news. Life's obligations would push all that aside.
I suppose the latter two questions addressed would be quite on target for someone at home with eternal recurrence, someone unquestionably not possessed by the notion of "the grass is greener," someone who had made all the "perfect" life choices and was either in unquestionable love with her work or independently wealthy. Wouldn't it be nice — sorry, not be sarcastic toward anyone who's so comfortable in their skin (and / or loaded), it's just never been me.
On #b, looks like I screwed up my numbering.
On #a, I wonder the same frequently: do they need to be asked? The facile Socratic retort doesn't apply I think; and yet if there is ever a time to do perhaps this precisely is the time . . .? One thing for sure, and no one every said I wasn't picky about language, but the logic of "at this moment" does miss the primary fact of what it means to be confronted "prematurely" with death. The Moment becomes This one, for better or worse. The next moment may never come.
And how can I resist the return to aleatory marxism, above, to note again that "the lonely moment of the last instance never comes"? Perhaps it's time for me to reevaluate that proposition in light of my new context . . .
Thursday, July 13, 2006
7.13.06, Working on Normal, Next Restaging
A pretty flat 6 on the Franky Scale today; and that's with some pretty sustained effort on my part to be as "normal" as possible. Otherwise I'd go mid-5's, just physically kind of crappy. I've been thinking that a bit more structure, in terms of "work" and related routines, might be helpful, and this was emphasized by Dr. Melfi yesterday as well. That means I was spending more time "in the office" today — though I guess I don't need the quotation marks since I actually was in my office, not just something like it. The bloody nausea is a real drain. That's the primary complaint I'd make, the shit is just tedious. You know it won't kill you, not on its own; it's not an unbearable pain in and of itself; and I basically have enough control over it to never actually throw up. It's just a nagging . . . like my writing at the moment.
So, the plan is for my next (this will be the second) restaging to take place next week, on the 20th I believe. In case I didn't offer up this number before the most recent CA 19-9 score was 5790, which is 210 points down from the previous number, which was about 300 points down from the previous, and that was about 3000+ below the previous. My oncologist asserts that there is no correlation at all between "better news" and larger drops; he did reassure me that the only significant numerical movement is down. As long as it goes down, whether by 10 points or 1000 points, we're to read it the same way. Still good news, have to say, "good news" within the confines of this system. On the 20th, there will be more CA 19-9 numbers, other bloodwork, and more radiography (CT scans). Has the tumor shrunk more? Is it static? What does my liver look like? (. . . it's like a movie preview . . . or not.)
Finally, for now, SLC people, cheer up. I can feel these worried vibes from you up there at 4K+ feet . . .
So, the plan is for my next (this will be the second) restaging to take place next week, on the 20th I believe. In case I didn't offer up this number before the most recent CA 19-9 score was 5790, which is 210 points down from the previous number, which was about 300 points down from the previous, and that was about 3000+ below the previous. My oncologist asserts that there is no correlation at all between "better news" and larger drops; he did reassure me that the only significant numerical movement is down. As long as it goes down, whether by 10 points or 1000 points, we're to read it the same way. Still good news, have to say, "good news" within the confines of this system. On the 20th, there will be more CA 19-9 numbers, other bloodwork, and more radiography (CT scans). Has the tumor shrunk more? Is it static? What does my liver look like? (. . . it's like a movie preview . . . or not.)
Finally, for now, SLC people, cheer up. I can feel these worried vibes from you up there at 4K+ feet . . .
Wednesday, July 12, 2006
7.12.06, What Cannot be Said
Pre-script from the early evening:
1) I did have a meeting with Dr. Whiting yesterday at the end of my infusion session. We talked chemo rationale once again; all of what was said conforms to what I wrote about yesterday in the a.m. before my IV party (see that post). We also discussed my latest CA-19-9 numbers, no lowered to 5790. Another drop. Another step in the (for now) desired direction. Every downward movement of the number, the so-called tumor marker, is desirable.
2) The swirl of feelings, dealings, copings, and communications or their attempts continues a pace. As it should. Few if any of us know what we're doing; but most all of us seem to be trying whatever we know or sense how to do.
3) How I try, in countless ways. One through writing that comes often through reading. So, three new books yesterday: after reading more of Michel Surya's enigmatic biography George Bataille, I picked up Bataille's three-volume The Accursed Share on that inexplicable surplus energy to be found, used, squandered, or celebrated in any "political" economy," one I've never reached yet; then also Louis Althusser's (yes, finally my favorite) last of three posthumous works by Verso called Philosophy of the Encounter: Later Writings, 1978-1987, which includes a great short bit at the end called "Portrait of the Materialist Philosopher." I seem unable to resist the philosophers, especially those solidly materialist in outlook.
The standard blog:
Several pages of very heavy material, possibly for the blog, sit waiting on a desk. (OK, there in my harddrive, but the paper and desk reality seems so much more appealing . . .) Problem is precisely their weight. The blog has become a wonderful space to pass along and share certain types of information, but only certain types. Boundless and totally honestly meditations on death, for example, I fear will not be well received. Could be taken symptomatically, as signs of some disturbance within me, or worse, signs that I'm weak and not fighting hard enough, not optimistic. So they wait, and some are good, while I evaluate . . .
Franky Scale: (still no new measure for this) Given the drugs and steriods still pulsing from yesterday I feel all right, a general absence of worse feeling; I'll put 6. There is still a kind of background fatigue from a day of sucking in toxic fluids and before tomorrow which is always the day when the negative effects seem revealed. A limbo of Wednesday, where I peeter (sp?) around as if normal, wind down in the evening, then close the shutters in anticipation of the storm.
Otherwise, in the land of what we can say acceptably, I go to see my shrink today, with whom I'm experiencing a bit of dissatisfaction. I feel like many helpful, kind of textbook suggestions have been made — even more helpful because they come from the cancer textbook which I can't seem to find — but on the deeper, if you will more existential issues, we've not done much. So today I'm going to direct the talk, and ask for her help, so that we stay only in that area where possible: things like the use of one's time when you have little time left, the identification of desire, the discrimination between more and less genuine desires, what becomes of the concept of selfishness in the face of death.
Most of these issues are subordinated to that first question: "What do I want to do?" It's asked rhetorically, it's a question that by nature she cannot answer for me, it's an impossible game from the start, even the rules contradict each other, and yet this is the kind of knowledge that I'm off to seek.
Here is where being, for example, a devout Christian or (un)serious Zen follower would obviate the need to ask — to yield oneself to an unquestionable higher authority, or simply to flow without concern for or attachment to authority. (But who wants to take the easy way out? That's at least one thing I've learned about life.)
1) I did have a meeting with Dr. Whiting yesterday at the end of my infusion session. We talked chemo rationale once again; all of what was said conforms to what I wrote about yesterday in the a.m. before my IV party (see that post). We also discussed my latest CA-19-9 numbers, no lowered to 5790. Another drop. Another step in the (for now) desired direction. Every downward movement of the number, the so-called tumor marker, is desirable.
2) The swirl of feelings, dealings, copings, and communications or their attempts continues a pace. As it should. Few if any of us know what we're doing; but most all of us seem to be trying whatever we know or sense how to do.
3) How I try, in countless ways. One through writing that comes often through reading. So, three new books yesterday: after reading more of Michel Surya's enigmatic biography George Bataille, I picked up Bataille's three-volume The Accursed Share on that inexplicable surplus energy to be found, used, squandered, or celebrated in any "political" economy," one I've never reached yet; then also Louis Althusser's (yes, finally my favorite) last of three posthumous works by Verso called Philosophy of the Encounter: Later Writings, 1978-1987, which includes a great short bit at the end called "Portrait of the Materialist Philosopher." I seem unable to resist the philosophers, especially those solidly materialist in outlook.
The standard blog:
Several pages of very heavy material, possibly for the blog, sit waiting on a desk. (OK, there in my harddrive, but the paper and desk reality seems so much more appealing . . .) Problem is precisely their weight. The blog has become a wonderful space to pass along and share certain types of information, but only certain types. Boundless and totally honestly meditations on death, for example, I fear will not be well received. Could be taken symptomatically, as signs of some disturbance within me, or worse, signs that I'm weak and not fighting hard enough, not optimistic. So they wait, and some are good, while I evaluate . . .
Franky Scale: (still no new measure for this) Given the drugs and steriods still pulsing from yesterday I feel all right, a general absence of worse feeling; I'll put 6. There is still a kind of background fatigue from a day of sucking in toxic fluids and before tomorrow which is always the day when the negative effects seem revealed. A limbo of Wednesday, where I peeter (sp?) around as if normal, wind down in the evening, then close the shutters in anticipation of the storm.
Otherwise, in the land of what we can say acceptably, I go to see my shrink today, with whom I'm experiencing a bit of dissatisfaction. I feel like many helpful, kind of textbook suggestions have been made — even more helpful because they come from the cancer textbook which I can't seem to find — but on the deeper, if you will more existential issues, we've not done much. So today I'm going to direct the talk, and ask for her help, so that we stay only in that area where possible: things like the use of one's time when you have little time left, the identification of desire, the discrimination between more and less genuine desires, what becomes of the concept of selfishness in the face of death.
Most of these issues are subordinated to that first question: "What do I want to do?" It's asked rhetorically, it's a question that by nature she cannot answer for me, it's an impossible game from the start, even the rules contradict each other, and yet this is the kind of knowledge that I'm off to seek.
Here is where being, for example, a devout Christian or (un)serious Zen follower would obviate the need to ask — to yield oneself to an unquestionable higher authority, or simply to flow without concern for or attachment to authority. (But who wants to take the easy way out? That's at least one thing I've learned about life.)
Tuesday, July 11, 2006
7.11.06, It Could Be Worse. . .
Good morning. As most of you know today is IV chemo day. Not really like the joyess and stress-free capitalist celebration we call X-mas, nor like a birthday, but I wanted to write a few words of reminder about what it's like to allay some fears that I read, feel, and hear out there. Two of the comments for today — poasted to yesterday's short post on the blog — express this concern in a nutshell and then in a larger nutshell, a mellon rind-shell, or some much more appropriate metaphor, according to the proclivities of each author. Last week, too, a friend of mine went to the IV chemo session for me for the first time, and I hope no one will mind me saying so but the change this visit brought about has been rather stark.
There are two (I think?) long posts about what it's like for me to go into the hospital for the infusions once a week, and then of course the pill-taking chemo on all the rest of the days is mundane. Boring and unnoticeable unless you know what I'm doing, as harmless looking as taking multivitamins after breakfast or dinner. Sure, the symbolic import of taking the pills was unsettling for me the very first time I threw these peach colored, oval pills into my mouth. That's a minor thing though. If you go back and find those early posts on infusion, every detail is drawn out and the whole story is there, I can't remember the dates off hand; the whole thing is retold so as to settle fears, to say "Hey, this is not that bad," because I knew what I had imagined before seeing or experiencing this and I didn't want anyone's imagination to run away with them by not knowing what's happening.
Today, then, I wanted to post a little reminder: yeah, the drugs are toxic and there are side effects, but the whole process is like a long IV, just like you see at any hospital, just like many of you have had before. I get pricked with a needle, once, sort of, but even that is probably less serious than when any of you get a blood test because I have the fancy port-o-cath implanted in my upper right chest, making it childlike simple to get drugs into my aorta. It means they can't miss when they stick me, no vein finding, prick, done. Easy. I go, I lie down in a bed, I have a little private room (which I should for the cost!), they take my blood, then I wait for about 40 minutes. They go off to check that I'm still "otherwise healthy" enough to get the chemo drugs. After that, I keep lying there, and get an IV for 4 hours. Like I said before there is no pain during this process. Too, it's got to be understood for what it is. It must be accepted, known to be real, understood to have what power it does; otherwise we enter into the kind of denial that paralyzes rather than makes productive again.
Another question that came up: how long will you do this? What if the side effects are too serious, would you want to stop? Well, I do plan on asking the doctor again just to make sure the situation hasn't changed, but chemotherapy for me, for someone "in this stage (of cancer)" is palliative, it's for reducing other symptoms, it's for giving me more time. I stop chemo and poof. Who knows exactly how long till "poof" but that's what happens. You quit chemo and the cancer gets to have its way with you. So the answer to how long is, for what the term is worth, forever. "Forever" as that terms signifies for me; my own forever. The only other option is my mother's, that would be a miracle. There aren't any other options, none recorded and known about anyway.
My apologies for posting something so mundane, it just seemed necessary. I know the commentors can say "I know the infusion itself isn't so bad, it's the cancer I hate." Yeah, that's a valid point; but so is what I've written here. The chemo is all I have to keep me going, it is quite literally the Anti-Cancer. Just like they call chemotherapy drugs "anti-cancer" drugs. We're supposed to like chemo. Your grief and anger and other myriad forms of pain are not being touched here; they're all necessary and can be healthy feelings, I know this. They are different than mine, as we all grieve differently as one friend pointed out recently, and I respect yours. *Let me try and restate what she said to me, that basically that all of us in our individual complexity will grieve in and out of different stages, will feel depression or anger or sadness or loss of outporing love, whatever, at different times — the point is that when I look into your eyes, all I can truthfully is "I know you're in pain, I know it must hurt, but I can't really know what that pain is like." It's about a strong word-feeling: humility. As described to me. (Are you embarrassed yet?)* Me, I feel stuck, ill able to express my point here. . . I do thank you for all the concern and the support just before the infusions. Simultaneously, I don't want us to get out the black crepe, rent the hall, and tie gardenias to the hearse.
. . . I'll be honest, I'm reaching here, not sure from where nor to where. I feel a need to say something helpful, or comforting, or informative when I read those comments, like yesterday's, and when I see friends who no longer know how to act. I reach for the "How to Die of Cancer" handbook only to find and remember, "Right, there isn't one." For now, read generously, know that I'd like to help, and that often times all I can do is just stagger my fingers across the keys — which too can be a problem since neuropathy in the fingers is also a chemo side effect.
There are two (I think?) long posts about what it's like for me to go into the hospital for the infusions once a week, and then of course the pill-taking chemo on all the rest of the days is mundane. Boring and unnoticeable unless you know what I'm doing, as harmless looking as taking multivitamins after breakfast or dinner. Sure, the symbolic import of taking the pills was unsettling for me the very first time I threw these peach colored, oval pills into my mouth. That's a minor thing though. If you go back and find those early posts on infusion, every detail is drawn out and the whole story is there, I can't remember the dates off hand; the whole thing is retold so as to settle fears, to say "Hey, this is not that bad," because I knew what I had imagined before seeing or experiencing this and I didn't want anyone's imagination to run away with them by not knowing what's happening.
Today, then, I wanted to post a little reminder: yeah, the drugs are toxic and there are side effects, but the whole process is like a long IV, just like you see at any hospital, just like many of you have had before. I get pricked with a needle, once, sort of, but even that is probably less serious than when any of you get a blood test because I have the fancy port-o-cath implanted in my upper right chest, making it childlike simple to get drugs into my aorta. It means they can't miss when they stick me, no vein finding, prick, done. Easy. I go, I lie down in a bed, I have a little private room (which I should for the cost!), they take my blood, then I wait for about 40 minutes. They go off to check that I'm still "otherwise healthy" enough to get the chemo drugs. After that, I keep lying there, and get an IV for 4 hours. Like I said before there is no pain during this process. Too, it's got to be understood for what it is. It must be accepted, known to be real, understood to have what power it does; otherwise we enter into the kind of denial that paralyzes rather than makes productive again.
Another question that came up: how long will you do this? What if the side effects are too serious, would you want to stop? Well, I do plan on asking the doctor again just to make sure the situation hasn't changed, but chemotherapy for me, for someone "in this stage (of cancer)" is palliative, it's for reducing other symptoms, it's for giving me more time. I stop chemo and poof. Who knows exactly how long till "poof" but that's what happens. You quit chemo and the cancer gets to have its way with you. So the answer to how long is, for what the term is worth, forever. "Forever" as that terms signifies for me; my own forever. The only other option is my mother's, that would be a miracle. There aren't any other options, none recorded and known about anyway.
My apologies for posting something so mundane, it just seemed necessary. I know the commentors can say "I know the infusion itself isn't so bad, it's the cancer I hate." Yeah, that's a valid point; but so is what I've written here. The chemo is all I have to keep me going, it is quite literally the Anti-Cancer. Just like they call chemotherapy drugs "anti-cancer" drugs. We're supposed to like chemo. Your grief and anger and other myriad forms of pain are not being touched here; they're all necessary and can be healthy feelings, I know this. They are different than mine, as we all grieve differently as one friend pointed out recently, and I respect yours. *Let me try and restate what she said to me, that basically that all of us in our individual complexity will grieve in and out of different stages, will feel depression or anger or sadness or loss of outporing love, whatever, at different times — the point is that when I look into your eyes, all I can truthfully is "I know you're in pain, I know it must hurt, but I can't really know what that pain is like." It's about a strong word-feeling: humility. As described to me. (Are you embarrassed yet?)* Me, I feel stuck, ill able to express my point here. . . I do thank you for all the concern and the support just before the infusions. Simultaneously, I don't want us to get out the black crepe, rent the hall, and tie gardenias to the hearse.
. . . I'll be honest, I'm reaching here, not sure from where nor to where. I feel a need to say something helpful, or comforting, or informative when I read those comments, like yesterday's, and when I see friends who no longer know how to act. I reach for the "How to Die of Cancer" handbook only to find and remember, "Right, there isn't one." For now, read generously, know that I'd like to help, and that often times all I can do is just stagger my fingers across the keys — which too can be a problem since neuropathy in the fingers is also a chemo side effect.
Monday, July 10, 2006
7.10.06, Brief Check-In
Perhaps it's a purely psychosomatic issue, with the IV chemo session on for tomorrow, but this evening into tonight I've been feeling increasingly "out of it." More psychological than anything else, I'm sure of that. Still the "reality" of it. This would put me at a flat 6 on the Franky Scale. And in part what felt like a better day earlier, working in a cafe, being in a bookstore for a while, etc., turns downward with increasing nausea. That is definitely psychosomatic — I think I alluded to this earlier with a comment about Pavlov, or dogs, or me as dog, or as Pavlov, in any event starting to feel "sick" even before the needle is in. I can even know this, expect it, even plan for it, so why can't I just make it not happen? With that, a bit of lightness in the head, and at least the illusion that I'll start reading a new book tonight, I better close.
Sunday, July 09, 2006
7.09.06, "Death Has No Peer"
Allusions to voyeurism. (This is unrelated.) Tom Waits sings “The Black Rider,” none the less.
A nametag that says “Artist” and has a name on it.
A woman, who could be naked, smoking from behind. Black and white with shadows. In Polaroid profile.
Death’s Little Maxims, in the form of an ongoing list.
A rejection slip from another highbrow poetry magazine.
Cut. A perfectly made Americano. Still in that prime, finite window for drinking. For my mother who does not drink coffee, it’s her favorite.
One only slightly faded copy of William Carlos Williams’ book Paterson, supposed to be a locale as allegory for a man’s life. Printed the same year Frank was born.
The constant search for numbers: 7? Or 6? Or 6.47? or maybe 6.8 for sun and include a graphic next to it, Small Face not smiley — what could be worse — just a little face that isn’t really rattled, a brow that’s not really furrowed, not waiting, just being, eyes not too washed out.
Cut. Real eyes, with the biggest question in today’s tightly circumscribed world, what book next?
Circumscription, however, upheld by numerous questions of true immensity.
A nametag that says “Artist” and has a name on it.
A woman, who could be naked, smoking from behind. Black and white with shadows. In Polaroid profile.
Death’s Little Maxims, in the form of an ongoing list.
A rejection slip from another highbrow poetry magazine.
Cut. A perfectly made Americano. Still in that prime, finite window for drinking. For my mother who does not drink coffee, it’s her favorite.
One only slightly faded copy of William Carlos Williams’ book Paterson, supposed to be a locale as allegory for a man’s life. Printed the same year Frank was born.
The constant search for numbers: 7? Or 6? Or 6.47? or maybe 6.8 for sun and include a graphic next to it, Small Face not smiley — what could be worse — just a little face that isn’t really rattled, a brow that’s not really furrowed, not waiting, just being, eyes not too washed out.
Cut. Real eyes, with the biggest question in today’s tightly circumscribed world, what book next?
Circumscription, however, upheld by numerous questions of true immensity.
Saturday, July 08, 2006
7.08.06, Mere Numbers
Doesn't seem like I'll be posting today. After two posts yesterday I don't want any of you to get spoiled (ok, bored or obligated); also and ironically, I've had great streak of writing today since this morning so in one sense I'm penned out.
Franky Scale today was a good 7. A legit 7 this time, fairly positive, far less unpleasure than on most days, and with that lack of distraction I was able to really sit down and concentrate. I miss working like that, for hours and hours and only stopping from the necessity of a meal, not so much desire for one. First half of the day prose, second half poetry. Today I got it, so there.
Franky Scale today was a good 7. A legit 7 this time, fairly positive, far less unpleasure than on most days, and with that lack of distraction I was able to really sit down and concentrate. I miss working like that, for hours and hours and only stopping from the necessity of a meal, not so much desire for one. First half of the day prose, second half poetry. Today I got it, so there.
7.07.06, Scratch the Myths, Why Not
Friday night (you gotta work when you can work) before sleep approaches, wait. That should be more accurately put ". . . before I decide it's about 30 minutes or so before I need to sleep and take an Ambien." Tired of reading. God, how much can a person read — and I am the one who chose the most inappropriate profession since I read like a sloth. Enjoy it, yes; do it quickly, not even. After wandering from Spinoza to Socrates (ok, Plato really) to some generic on text on Buddhist enlightenment (Top Secret) to Bruce R. McConkie (Mormon theologian) to Nietzsche to Zizek. How much indeed. The string of ideas and theories comes round to a kind of mental blur where I now find myself, confusion maybe, chemo-fication perhaps, an uncharted state where my thoughts wander and figure "why not post twice in one day?" and "why not post something that might not be related to cancer?" (Though it does relate to poetry; and then through words to voyeurism, and I know you're all voyeurs.)
And if I try to push the connections I might say we've discussed or at least alluded to the power of myth and mythologizing on this blog before and that alone could connect what I'm going to post at bottom. Another tie might be themes of finishing one phase and moving into another. Not progress, not so naive; but naive enough still in the way it's written. In my defense it's ten+ years old so cut me some slack. If you're also in this state of Friday night mindblur you might not mind too much. If you're still buzzed from a night out and simply checking the site out of mindless habit, you might also not mind too much. A word or two still strike me as out of place whenever I look back at this — and that's breaking the great first rule of public speaking and or reading: Never begin by apologizing. Alas. More mindblur.
The poem:
"It Is a Myth Where I Live . . ."
It is a myth where I live,
a dark purple sleep of myth they call life,
where I do everything but forgive
an ex-friend who now goes by wife,
living with me without being what is us,
rocking in and out of deceitful slumber
to avoid sitting together to discuss
the quirks of mine that numb her —
when waking to this brunt it’s painful
my soul-joints crack and creak when I rise,
forecast the weather, dimly attempt again to fill
the bottomless void of compromise
between what I saw as self and thought integrity,
to appear pleased about philistines’ presents
lest they feel discomfort on account of me.
They buy and wrap their Gods in flowered paper
never dare, why would they, to open them alone.
The memories of those times will not escape her, for
blood is thicker than watering what you haven’t sewn.
Wiping rheum from my sleepless eyes
as I wait to learn why missteps and strife
are more common to us than compassion,
depression better known than the happy life,
I ask through artifice, the one medium
that does not talk back in eternal truths
but rather lies to me, my thanks, so that
tedium will never scratch the legends
or taint the heroes that I choose . . .
(12:44 AM, August 1991
Provo, Utah)
And if I try to push the connections I might say we've discussed or at least alluded to the power of myth and mythologizing on this blog before and that alone could connect what I'm going to post at bottom. Another tie might be themes of finishing one phase and moving into another. Not progress, not so naive; but naive enough still in the way it's written. In my defense it's ten+ years old so cut me some slack. If you're also in this state of Friday night mindblur you might not mind too much. If you're still buzzed from a night out and simply checking the site out of mindless habit, you might also not mind too much. A word or two still strike me as out of place whenever I look back at this — and that's breaking the great first rule of public speaking and or reading: Never begin by apologizing. Alas. More mindblur.
The poem:
"It Is a Myth Where I Live . . ."
It is a myth where I live,
a dark purple sleep of myth they call life,
where I do everything but forgive
an ex-friend who now goes by wife,
living with me without being what is us,
rocking in and out of deceitful slumber
to avoid sitting together to discuss
the quirks of mine that numb her —
when waking to this brunt it’s painful
my soul-joints crack and creak when I rise,
forecast the weather, dimly attempt again to fill
the bottomless void of compromise
between what I saw as self and thought integrity,
to appear pleased about philistines’ presents
lest they feel discomfort on account of me.
They buy and wrap their Gods in flowered paper
never dare, why would they, to open them alone.
The memories of those times will not escape her, for
blood is thicker than watering what you haven’t sewn.
Wiping rheum from my sleepless eyes
as I wait to learn why missteps and strife
are more common to us than compassion,
depression better known than the happy life,
I ask through artifice, the one medium
that does not talk back in eternal truths
but rather lies to me, my thanks, so that
tedium will never scratch the legends
or taint the heroes that I choose . . .
(12:44 AM, August 1991
Provo, Utah)
Friday, July 07, 2006
7.07.06, Paradoxical Necessity
BTW, DZD: In case I don't grab a phone in timely fashion today, happy birthday to you Ms. One more year and you'll be blessed no doubt with some numerological gift that comes from 7's, maybe you should head to Reno and drop some nickels next time. For now, happiness and love.
For me, Franky Scale: a wavering from 6 to 7. The nausea is much better today — yesterday kicked my ass, to put it plainly, and I decided to heed the voice that advocates severe napping. Restorative sleep therapy I think it's called. During these second and third days after the IV chemo I've been trying to take this pill called zofran, trying means "remembering to." Part of me, if it's possible to have some Depression-era attitudes about money that might have been passed to me from my parents, that's what the part is, hesitates when I'm about to pop a zofran. Even on the cheap side of the agreement between my insurance company and CuraScript, they cost something like $59 a pill. Almost enough to make you choke on it. They are supposed to help with nausea for twelve hours though and they seem to work all right. Too, I've been eating more ginger candy (thanks to sender), which does help in the short term, when it kind of wells up in your throat in those sudden moments. There's also compazine, metoclopramide, and lorazepam (under the tongue for fast relief, or something like that).
The paradox alluded to above has to do with "work" — that which you get paid for. I had to go into school today to seem friendly, persuasive, and intelligent (tall order all at one time) with a group of interviewers from Korea who are deciding whether my nameless university in Seattle will be awarded a substantial chunk of money for a special Korean Studies center grant. Doing my part, I figured. Plus they asked me to come out for it. They wanted to tour a special library exhibit we're doing on rare books from the "Liberation Space" period of 1945-1950, when Korea was actually one Korea and for a few years of the five the country was yet to be divided or occupied in North or South by larger imperial interests. It's the one period in the 20th century when the Koreans had a shot at their "own voice," and I wrote the catalog essay for the exhibit so I had a minor role to perform. Our librarian kindly told me how pale I looked, however, but perhaps not everyone saw what she saw. (And I ran into a member of my dept who hasn't seen me in two months and thinks I look like ever before, which means either "good" or at least "normal" — more evidence that in reality I'm doing well with side effects.)
The oddity was how getting out for such a meeting and going through the formal work motions seems to have some positive distraction aspects to it. On the other obvious hand, it's not always a joy to get back out to work. Then, too, the unpleasant realization I think most of us would have when you're forced to take account of "your life" that your work has been Work and a necessity for most of us, that it's not always the dream some people assume it is. The grass always being greener. Like "summers off" and similar myths about academic life. Yes, summers off, if you count "off time" as those three months when you need to publish articles and try to finish book manuscripts. Still, there's something therapeutic about it. I mean, if you're not working, what will you do? That's another surprising realization in "times like these."
So many people have encouraged me, with the best of intentions, to go do that thing you've always wanted to do! Have you ever really sat down to think that through? Do you really have one thing, or a few things, you've just always wanted to do? If I just do X, then my life will be complete! It seems that life's winding down is more mundane than dramatic, a tougher piece of information to swallow I think. I'm of the mind now that it doesn't really work that way, that the One Thing will make you complete. Rather you're faced with everything you have managed to do, to date and that's about it, and you get to ask yourself, "Is this enough?" And you're forced to answer, or at least consider seriously, "It may not matter, because this is what's been done." So work and other paradoxical necessities might not hold all the answers and yet they might still hold a primary structuring place in our lives.
Thoughts to end the week with, or to start the weekend with. You choose.
For me, Franky Scale: a wavering from 6 to 7. The nausea is much better today — yesterday kicked my ass, to put it plainly, and I decided to heed the voice that advocates severe napping. Restorative sleep therapy I think it's called. During these second and third days after the IV chemo I've been trying to take this pill called zofran, trying means "remembering to." Part of me, if it's possible to have some Depression-era attitudes about money that might have been passed to me from my parents, that's what the part is, hesitates when I'm about to pop a zofran. Even on the cheap side of the agreement between my insurance company and CuraScript, they cost something like $59 a pill. Almost enough to make you choke on it. They are supposed to help with nausea for twelve hours though and they seem to work all right. Too, I've been eating more ginger candy (thanks to sender), which does help in the short term, when it kind of wells up in your throat in those sudden moments. There's also compazine, metoclopramide, and lorazepam (under the tongue for fast relief, or something like that).
The paradox alluded to above has to do with "work" — that which you get paid for. I had to go into school today to seem friendly, persuasive, and intelligent (tall order all at one time) with a group of interviewers from Korea who are deciding whether my nameless university in Seattle will be awarded a substantial chunk of money for a special Korean Studies center grant. Doing my part, I figured. Plus they asked me to come out for it. They wanted to tour a special library exhibit we're doing on rare books from the "Liberation Space" period of 1945-1950, when Korea was actually one Korea and for a few years of the five the country was yet to be divided or occupied in North or South by larger imperial interests. It's the one period in the 20th century when the Koreans had a shot at their "own voice," and I wrote the catalog essay for the exhibit so I had a minor role to perform. Our librarian kindly told me how pale I looked, however, but perhaps not everyone saw what she saw. (And I ran into a member of my dept who hasn't seen me in two months and thinks I look like ever before, which means either "good" or at least "normal" — more evidence that in reality I'm doing well with side effects.)
The oddity was how getting out for such a meeting and going through the formal work motions seems to have some positive distraction aspects to it. On the other obvious hand, it's not always a joy to get back out to work. Then, too, the unpleasant realization I think most of us would have when you're forced to take account of "your life" that your work has been Work and a necessity for most of us, that it's not always the dream some people assume it is. The grass always being greener. Like "summers off" and similar myths about academic life. Yes, summers off, if you count "off time" as those three months when you need to publish articles and try to finish book manuscripts. Still, there's something therapeutic about it. I mean, if you're not working, what will you do? That's another surprising realization in "times like these."
So many people have encouraged me, with the best of intentions, to go do that thing you've always wanted to do! Have you ever really sat down to think that through? Do you really have one thing, or a few things, you've just always wanted to do? If I just do X, then my life will be complete! It seems that life's winding down is more mundane than dramatic, a tougher piece of information to swallow I think. I'm of the mind now that it doesn't really work that way, that the One Thing will make you complete. Rather you're faced with everything you have managed to do, to date and that's about it, and you get to ask yourself, "Is this enough?" And you're forced to answer, or at least consider seriously, "It may not matter, because this is what's been done." So work and other paradoxical necessities might not hold all the answers and yet they might still hold a primary structuring place in our lives.
Thoughts to end the week with, or to start the weekend with. You choose.
Thursday, July 06, 2006
7.06.06, Pain and Follicles
Five, or 5, if you will: whoever said the Franky Scale had lost some of its effectiveness is right. Is a 5 on the scale dead center, no pun, or right in the middle of all the possible feelings. Today is simply the second day after the IV chemo day, traditionally a Day of Suck. It's not horrific but low-grade fever and that kind of flu-like feeling when your hair follicles kind of hurt. Do you know what I mean? Pain in your follicles. I don't get that. I'd worry it's some horrible sign about my hair but I know this symptom from fevers, etc., before. Blech. Naps. Chicken broth later on. Maybe some white rice to go with it.
If I could get my FS up, my plan had been to get out to a neighborhood cafe, pen in hand, or keys under finger, and get my ass to work. Now I'm on the fence. That's the news for now.
Seattle shows its colors today, spreading out a mild temp of something like the low 60s, perhaps there's a chance of rain and there is grey across most of the sky except a tiny hopeful band of bluer laid over West Seattle. I don't mind any of it, it accounts for all the cafes, in all likelihood. What accounts for all the ink-covered hipsters in my neighborhood I can't say — is there some connection between rain and grey and tatooes? Topic to ponder while you wait for the extra strength Tylenol to cut the fever.
If I could get my FS up, my plan had been to get out to a neighborhood cafe, pen in hand, or keys under finger, and get my ass to work. Now I'm on the fence. That's the news for now.
Seattle shows its colors today, spreading out a mild temp of something like the low 60s, perhaps there's a chance of rain and there is grey across most of the sky except a tiny hopeful band of bluer laid over West Seattle. I don't mind any of it, it accounts for all the cafes, in all likelihood. What accounts for all the ink-covered hipsters in my neighborhood I can't say — is there some connection between rain and grey and tatooes? Topic to ponder while you wait for the extra strength Tylenol to cut the fever.
Wednesday, July 05, 2006
7.05.06, What Becomes of Fear
The most crazy event in my life, of late, was probably last night, 2:23 a.m. — did anything significant happen historically at that time? anyone lose their virginity? relatives passed away then? — I woke up not from something usual like a run to the bathroom or a fever and wet clothing, but from hiccups.
Six fucking hours of hiccups! I kept thinking of historically figures who had died of having hiccups, reading the internet to find out causes and countless "cures," not a single one of which worked by the way. Upside down water-drinking, earlobe rubbing concentrically, holding one's breath in countless odd combinations, swallowing a tsp of dry (white? I guess) sugar without getting it wet or absorbed on the back of your tongue (that one is tough), drinking lots of water, drinking lots of it slowly, drinking lots of through a paper towel, and for all it's worth they may as well have said "Get a pair of bright red pumps and a tiny woman's thong, wear these and nothing else and dance in front of your 8th floor window while the police below harass drug dealers and scan local buildings with their spotlights." It would have done just as much good.
From just after two till about 4 I just worked at it, killing these goddam diaphragm spasms, then just reading and living with it," then I figured if you get that tired and your body is going hiccup through sleep anyway, the let it. So from 4 until about 6-something I slept and hiccupped and then got up, took my morning drug routine, and they went away sometime between about 6 and 10 when I got up later. (I always try to get 8 or 9 hours sleep now; I treat that bit of medical advice as if it really matters, where I couldn't give two shits about sleep before . . . actually, phsysiologically speaking I still can't give two shits about it, or most anything else, but that is quite a different chapter in this story.)
Before I work on the Franky Scale, or offer any more brilliance about hiccups and such, I wanted to re-post a quote that was put into the comment section of the blog early on by The Princess, at my request then, but I think very few people read it or paid it much attention. It's worth some time. In many ways this uncanny line from Garcia-Marquez, from his book Love in the Time of Cholera, works as my motto, from now till death. So there is a certain amount weight hung on it.
And before I give the line, it was also uncanny that good friend, who understands well what to ask and what not to ask, got me with a really pointed question — it was appropriate but just not one I had thought before, and this question came before coming across the Garcia-Marquez quote, which was re-stumbled over later that same day. She asked me the simple question: "What are you most afraid of about dying?" What is more simple, huh? What do you fear? What scares you? And this could lead into, what's left undone? Who will you miss? (but that's an already flawed question in that presumes post-mortem consciousness....my bad) But it points to all those feelings about "now until then" and in the simplest form.
My answer: "The pain, I guess. I don't want to suffer through intolerableble pain, the kind of pain that makes you want to die, anyway, by any means. The pain that is a "10" on the doctors' pain scale." Or I said something like that, surely somewhat less articulate, since I find my verbal articulation has really taken a nose-dive in the last three months. So keep that question and answer in mind when you read G-M's idea:
"Each man is a master of his own death, and all that we can do when the time comes is to help him die without fear or pain" (Love in the Time of Cholera 10).
The fear (the same fear in all the poetry) comes from pain, the fear of the pain. We say "do not go gentle, do not go gentle" but there is a part of the brain that knows, or wonders the unmentionable question at least, which is at what point will I not be able to endure the pain any more. Notice how none of the figures in Dylan Thomas's poem heed his advice — they all couldn't fulfill what they hoped to, they were all what-if's. At what point with the unpleasure simply be the norm of the pleasure principle? Where, or when, does that happen? That's the rub of the waiting game . . . is this the pain? No. This one? This, is it normal, extreme, is it too masked by oxycotton . . . . is it . . . . is it?
The quote works as motto for now, and I wanted to make sure more people had a chance to see it. In the world frustrationion which seems to be where all of you live, wanting to help but either not knowing what to do or, perhaps — and yes, I usually see this when it happens, give me credit — of having a difficult time accepting what I say I need or don't need. I was solitary before, why would I become such a more of a social animal now? Though I have a bit. I'm still OK being alone when I want. I did not live in Salt Lake City before, my family did; why change that now? My life is here, most of it that is. I've lived in many places and each place holds part of me. Now I'm here, by choice; I'm alone sometimes, also by choice; I tell you that your "being there" is a great help, and it is. "[A]nd all that we can do when the time comes . . ." I don't know how Garcia-Marquez hit on that with such accuracy without having gone to the dead place, but he's right on.
Franky Scale: I'll say low 7, since I feel pretty good but I'm also just a hair above the Hell's 10th circle filled with the eternal hiccupers — I'll check my Dante — so I'm hesitant. Oh [!!This is a Christian spoiler alert, blesphemy ahead!!], did we ever talk about what happens to a Mormon if you catch Jesus wearing crotchless garments and deny that you saw him? This came up in NYC after dinner, don't ask why, but we were theorizing how you can get thrown into the Mormon "hell"-like place, called Outer Darkness or Perdition. We figure seeing Jesus firsthand and then denying him is pretty bad, but if you see him wearing crotchless garments — probably baught on eBay — and you deny that, it's so sinful that you'll get transferred not to Outer Darkness but the Mormon leadership will cart your ass off to Catholic Hell. Then you're really screwed. Have you ever sat down and read any of Dante? Very serious shit. (Theology is such a consolation at times like this.)
Six fucking hours of hiccups! I kept thinking of historically figures who had died of having hiccups, reading the internet to find out causes and countless "cures," not a single one of which worked by the way. Upside down water-drinking, earlobe rubbing concentrically, holding one's breath in countless odd combinations, swallowing a tsp of dry (white? I guess) sugar without getting it wet or absorbed on the back of your tongue (that one is tough), drinking lots of water, drinking lots of it slowly, drinking lots of through a paper towel, and for all it's worth they may as well have said "Get a pair of bright red pumps and a tiny woman's thong, wear these and nothing else and dance in front of your 8th floor window while the police below harass drug dealers and scan local buildings with their spotlights." It would have done just as much good.
From just after two till about 4 I just worked at it, killing these goddam diaphragm spasms, then just reading and living with it," then I figured if you get that tired and your body is going hiccup through sleep anyway, the let it. So from 4 until about 6-something I slept and hiccupped and then got up, took my morning drug routine, and they went away sometime between about 6 and 10 when I got up later. (I always try to get 8 or 9 hours sleep now; I treat that bit of medical advice as if it really matters, where I couldn't give two shits about sleep before . . . actually, phsysiologically speaking I still can't give two shits about it, or most anything else, but that is quite a different chapter in this story.)
Before I work on the Franky Scale, or offer any more brilliance about hiccups and such, I wanted to re-post a quote that was put into the comment section of the blog early on by The Princess, at my request then, but I think very few people read it or paid it much attention. It's worth some time. In many ways this uncanny line from Garcia-Marquez, from his book Love in the Time of Cholera, works as my motto, from now till death. So there is a certain amount weight hung on it.
And before I give the line, it was also uncanny that good friend, who understands well what to ask and what not to ask, got me with a really pointed question — it was appropriate but just not one I had thought before, and this question came before coming across the Garcia-Marquez quote, which was re-stumbled over later that same day. She asked me the simple question: "What are you most afraid of about dying?" What is more simple, huh? What do you fear? What scares you? And this could lead into, what's left undone? Who will you miss? (but that's an already flawed question in that presumes post-mortem consciousness....my bad) But it points to all those feelings about "now until then" and in the simplest form.
My answer: "The pain, I guess. I don't want to suffer through intolerableble pain, the kind of pain that makes you want to die, anyway, by any means. The pain that is a "10" on the doctors' pain scale." Or I said something like that, surely somewhat less articulate, since I find my verbal articulation has really taken a nose-dive in the last three months. So keep that question and answer in mind when you read G-M's idea:
"Each man is a master of his own death, and all that we can do when the time comes is to help him die without fear or pain" (Love in the Time of Cholera 10).
The fear (the same fear in all the poetry) comes from pain, the fear of the pain. We say "do not go gentle, do not go gentle" but there is a part of the brain that knows, or wonders the unmentionable question at least, which is at what point will I not be able to endure the pain any more. Notice how none of the figures in Dylan Thomas's poem heed his advice — they all couldn't fulfill what they hoped to, they were all what-if's. At what point with the unpleasure simply be the norm of the pleasure principle? Where, or when, does that happen? That's the rub of the waiting game . . . is this the pain? No. This one? This, is it normal, extreme, is it too masked by oxycotton . . . . is it . . . . is it?
The quote works as motto for now, and I wanted to make sure more people had a chance to see it. In the world frustrationion which seems to be where all of you live, wanting to help but either not knowing what to do or, perhaps — and yes, I usually see this when it happens, give me credit — of having a difficult time accepting what I say I need or don't need. I was solitary before, why would I become such a more of a social animal now? Though I have a bit. I'm still OK being alone when I want. I did not live in Salt Lake City before, my family did; why change that now? My life is here, most of it that is. I've lived in many places and each place holds part of me. Now I'm here, by choice; I'm alone sometimes, also by choice; I tell you that your "being there" is a great help, and it is. "[A]nd all that we can do when the time comes . . ." I don't know how Garcia-Marquez hit on that with such accuracy without having gone to the dead place, but he's right on.
Franky Scale: I'll say low 7, since I feel pretty good but I'm also just a hair above the Hell's 10th circle filled with the eternal hiccupers — I'll check my Dante — so I'm hesitant. Oh [!!This is a Christian spoiler alert, blesphemy ahead!!], did we ever talk about what happens to a Mormon if you catch Jesus wearing crotchless garments and deny that you saw him? This came up in NYC after dinner, don't ask why, but we were theorizing how you can get thrown into the Mormon "hell"-like place, called Outer Darkness or Perdition. We figure seeing Jesus firsthand and then denying him is pretty bad, but if you see him wearing crotchless garments — probably baught on eBay — and you deny that, it's so sinful that you'll get transferred not to Outer Darkness but the Mormon leadership will cart your ass off to Catholic Hell. Then you're really screwed. Have you ever sat down and read any of Dante? Very serious shit. (Theology is such a consolation at times like this.)
Tuesday, July 04, 2006
7.04.06, Back in Seattle & My Big Money Drug Connection
[A couple of small comments of mine on comments made yesterday have been put in the Comment section. Fyi. -Mr. J]
Yep, it's here in Seattle where I get hooked up once a week, the mainline connection, and we're on such good terms the just put it on my tab every time. The experience is never tainted with the filth of lucre. No, no, no. Instead it's clean and business-like, structured, removed; just like the language we use. They never break my skin, poke me, stick this into your arm, etc., all they ever do is "access" my "port," and then about 5 hours later they tell me "Now, let out a deep breath and I'm going to deaccess your port." It's so that I'm almost not human sounding, hm, wondering why that would be? ... [the euphemism blog refuses to wait much longer...]
Today was more of the Fifth Cycle of chemo, the first infusion session in the hospital; and we made good time and got out in under 4.5 hours I think. Maybe even under 4 hours. I don't know how the time varies such but it does. I hung in until about 90 minutes in, tried to keep up and converse, with Ms. G. and Ted, but then I was called away to the land of IV benzadrine, ativan, and some steroids for an hour of so. Then back to the Dada book I picked up and which has given me some ideas for a whacky collage poem or two: first up, in part from talking with G, is going to the "Angelus Novus" poem from a few days ago. Start your bidding!
Franky Scale, trying to get more honest pictures across w/o hysteria (please hear me those of you who might tend toward overreaction...) and yet with accuracy) I'm putting today at 5. It just doesn't make sense to say "7" once more and then be thinking "yeah, I feel pretty good except for the 24/7 nausea right now, sure it's not to bad." I'll say it's 5 now but should improve as I get more rest and the day moves on.
Wood Scale: see attached photo. (just kidding)
Though I think I will put up a photo as kind of commemorative of the San Juan Islands trip from a month or so ago and then of the NY trip this week. One of my enitrely naked of course. My sense is that putting this much bubble bath in a B&B jacuzzi probably pissed someone off later — but the Kodak moment was worth it. And rated G. Later on I will get in touch with myself and ask how I feel about writing a "guest blog" for the people. Guest blogs tend to be so pupular after all.
Last, I hope everyone takes some time "off" or whatever is best for you today, but I hope you seriously reflect on the ragged shadow image of the different country, now entirely lost, that the US now is — the simulacrum. It's so far down the shitter I can't put it in any finer metaphor, it's going to require more scrubbing to get our arms clean than we can imagine, and that's only if we decide to reach into that pipe filled with excrement and try to pull it out. I know a lot of conservatives are reading this, so please, just do your own homework; please, read more than papers on both sides, check their sources, read government reports, see what the speeches actually say, read UN reports, Congressional records, etc. That should be enough to inform you accurately about the current administration. Anyone who blindly accepts this authority, Bush & Co, because of religion, god, party affiliation, or for whatever reason, is going to have a long period of out-damn-spot to deal with. As it should be.
Independence, yes. But independence from whom? Independence for what?
Yep, it's here in Seattle where I get hooked up once a week, the mainline connection, and we're on such good terms the just put it on my tab every time. The experience is never tainted with the filth of lucre. No, no, no. Instead it's clean and business-like, structured, removed; just like the language we use. They never break my skin, poke me, stick this into your arm, etc., all they ever do is "access" my "port," and then about 5 hours later they tell me "Now, let out a deep breath and I'm going to deaccess your port." It's so that I'm almost not human sounding, hm, wondering why that would be? ... [the euphemism blog refuses to wait much longer...]
Today was more of the Fifth Cycle of chemo, the first infusion session in the hospital; and we made good time and got out in under 4.5 hours I think. Maybe even under 4 hours. I don't know how the time varies such but it does. I hung in until about 90 minutes in, tried to keep up and converse, with Ms. G. and Ted, but then I was called away to the land of IV benzadrine, ativan, and some steroids for an hour of so. Then back to the Dada book I picked up and which has given me some ideas for a whacky collage poem or two: first up, in part from talking with G, is going to the "Angelus Novus" poem from a few days ago. Start your bidding!
Franky Scale, trying to get more honest pictures across w/o hysteria (please hear me those of you who might tend toward overreaction...) and yet with accuracy) I'm putting today at 5. It just doesn't make sense to say "7" once more and then be thinking "yeah, I feel pretty good except for the 24/7 nausea right now, sure it's not to bad." I'll say it's 5 now but should improve as I get more rest and the day moves on.
Wood Scale: see attached photo. (just kidding)
Though I think I will put up a photo as kind of commemorative of the San Juan Islands trip from a month or so ago and then of the NY trip this week. One of my enitrely naked of course. My sense is that putting this much bubble bath in a B&B jacuzzi probably pissed someone off later — but the Kodak moment was worth it. And rated G. Later on I will get in touch with myself and ask how I feel about writing a "guest blog" for the people. Guest blogs tend to be so pupular after all.
Last, I hope everyone takes some time "off" or whatever is best for you today, but I hope you seriously reflect on the ragged shadow image of the different country, now entirely lost, that the US now is — the simulacrum. It's so far down the shitter I can't put it in any finer metaphor, it's going to require more scrubbing to get our arms clean than we can imagine, and that's only if we decide to reach into that pipe filled with excrement and try to pull it out. I know a lot of conservatives are reading this, so please, just do your own homework; please, read more than papers on both sides, check their sources, read government reports, see what the speeches actually say, read UN reports, Congressional records, etc. That should be enough to inform you accurately about the current administration. Anyone who blindly accepts this authority, Bush & Co, because of religion, god, party affiliation, or for whatever reason, is going to have a long period of out-damn-spot to deal with. As it should be.
Independence, yes. But independence from whom? Independence for what?
Monday, July 03, 2006
7.03.06, The Late Night Jonez
Just stepped back into my apartment with a view after the past several days in New York, one night in the city, one night in Albany — all the hot spots. Decisions were made: that of the Holy Synod by which the Franky Scale will be changed, the decision that if I travel somewhere then perhaps I'm the one who has to do a "guest blog," and that motility (more euphemism) is as important as ever.
Franky Scale (still pre-adjusted, but now more self-conscious) has been a 6; nothing went terribly wrong today, though there were several hours devoted to simple life-management tasks, the physiological kind.
On adjusting the scale, some questions need to be asked. Is there "rating inflation" on the scale? Or, what would a "normal" day's rating be? What constitutes a normal day anymore? Or, what would the Perfect Day be on the scale? A 10 I guess, but what does that mean. Part of the synod's discussion was how before cancer I would rarely have listed so many days in the 7 and 8 range, so what we need is somepsychologicall reevaluation of the why and wherefore of the Scale. Just food for thought; and suggestions are welcome. (Based on the popularity of the imagined Wood Scale I guess that would draw more attention from readers, as has been noted before. That will have to be done on a more one-to-one basis with either visual aids or the extreme use of metaphor, if not allegory.)
I slept half the flight — and I could never sleep on flights before getting pancreatic cancer, so that's one indication of the drain it can be occasionally. Half the flight in sleep, some in eating, some in scattered thought, and random jottings. Here are some of those: for those who can't sleep on planes, over plains, or just now.
Land - open - mine - naked - long unfulfilled - still - purchase - end of time - money - walking - enlightenment - dream - death - bier - fire - peak, treeless - Timpanogas - Pagonah - Parawon - Iron Country - Modena - Tocquerville - ranch -tract/s - houses - streets - population misanthropypy - distraction - blithe - wasted coastline - free hollow - deed - tax - susnset - effulgence - nightchill - tapwater - inaccess - solitude - selections - infrequencies - frozen - asphyxiated - withered - cut - window - starvation - noncommunication - blankets - void - mythologizing - enlightenment - long prior - no hope - grass - morning dew - tree - hillock - room.
Franky Scale (still pre-adjusted, but now more self-conscious) has been a 6; nothing went terribly wrong today, though there were several hours devoted to simple life-management tasks, the physiological kind.
On adjusting the scale, some questions need to be asked. Is there "rating inflation" on the scale? Or, what would a "normal" day's rating be? What constitutes a normal day anymore? Or, what would the Perfect Day be on the scale? A 10 I guess, but what does that mean. Part of the synod's discussion was how before cancer I would rarely have listed so many days in the 7 and 8 range, so what we need is somepsychologicall reevaluation of the why and wherefore of the Scale. Just food for thought; and suggestions are welcome. (Based on the popularity of the imagined Wood Scale I guess that would draw more attention from readers, as has been noted before. That will have to be done on a more one-to-one basis with either visual aids or the extreme use of metaphor, if not allegory.)
I slept half the flight — and I could never sleep on flights before getting pancreatic cancer, so that's one indication of the drain it can be occasionally. Half the flight in sleep, some in eating, some in scattered thought, and random jottings. Here are some of those: for those who can't sleep on planes, over plains, or just now.
Land - open - mine - naked - long unfulfilled - still - purchase - end of time - money - walking - enlightenment - dream - death - bier - fire - peak, treeless - Timpanogas - Pagonah - Parawon - Iron Country - Modena - Tocquerville - ranch -tract/s - houses - streets - population misanthropypy - distraction - blithe - wasted coastline - free hollow - deed - tax - susnset - effulgence - nightchill - tapwater - inaccess - solitude - selections - infrequencies - frozen - asphyxiated - withered - cut - window - starvation - noncommunication - blankets - void - mythologizing - enlightenment - long prior - no hope - grass - morning dew - tree - hillock - room.
Sunday, July 02, 2006
7.02.06, Concluding NY
Just returned from a meeting of the Holy Synod in Albany, with Frank, 34DD, and the Princess, and determined that the Franky Scale needs to be modified for accuracy. Exactly how this is to happen has yet to be determined, but it will be the subject of much prayer and fasting over the remainder of this holiday weekend. For the sake of continuity and in the absence of a new system, I'll say today the Franky Scale was a 6(ish); no problems to note and also nothing exceptionally positive in terms of health. Just working on regularity, a rather boring but crucial aspect of getting by.
Tomorrow afternoon it's back to the west coast and to blogs of some substance. A return to Seattle, a return to euphemisms, to continue what almost happened on Friday before the salutary distractions of the city.
Tomorrow afternoon it's back to the west coast and to blogs of some substance. A return to Seattle, a return to euphemisms, to continue what almost happened on Friday before the salutary distractions of the city.
Saturday, July 01, 2006
7.01.06, Chemo Cycle #5 Begins
Today begins the fifth cycle of three-week chemo for me. Specifically I'm entering the second cycle of the second round. These terms are slightly confusing and yet important in terms of overall treatment plan. Practically it means I started with the Xeloda pills again this morning, and keep that up 2x a day for two weeks, will have infusions on Tuesdays (even on the Fourth of July, at 8 o'clock in the goddam morning), and then I believe they will "restage" me again after this cycle. (Need to check on the restaging however.)
The "restaging" makes me think, again, about all the euphemisms surrounding this bizarre process of diagnosis, treatment, ongoing care, death, "moving on." See there's another. Restaging, resectable, lesion, unresectable, palliative care, metastases, impaction, access and de-access, ablation, appreciation (as in "no abnormalities are appreciated"), un / remarkable, — [thus starts the blog to come]
Franky Scale: 7. Generally good, the yummy milk of magnesia smoothies, so much fluid intake that you could set your watch by my hourly pee breaks at night, a mouthful of senna every night, and mix that with a fistful of opiates each day to offset all of the above and achieve "balance." There's another word deserving of at least an entire post. Go in fear of anyone who advocates balance... balance is not "rage, rage" for example, for starters.
In terms of the NY trip so far, what to say: humidity, a lot of White People on LI, SUV's, princesses & royalty, Dada, Roux-rain & remembering, animal experiments & euphemisms, a stony brook . . .
More later, hopefully today, perhaps from the Holiday Inn Express if they have internet access...
The "restaging" makes me think, again, about all the euphemisms surrounding this bizarre process of diagnosis, treatment, ongoing care, death, "moving on." See there's another. Restaging, resectable, lesion, unresectable, palliative care, metastases, impaction, access and de-access, ablation, appreciation (as in "no abnormalities are appreciated"), un / remarkable, — [thus starts the blog to come]
Franky Scale: 7. Generally good, the yummy milk of magnesia smoothies, so much fluid intake that you could set your watch by my hourly pee breaks at night, a mouthful of senna every night, and mix that with a fistful of opiates each day to offset all of the above and achieve "balance." There's another word deserving of at least an entire post. Go in fear of anyone who advocates balance... balance is not "rage, rage" for example, for starters.
In terms of the NY trip so far, what to say: humidity, a lot of White People on LI, SUV's, princesses & royalty, Dada, Roux-rain & remembering, animal experiments & euphemisms, a stony brook . . .
More later, hopefully today, perhaps from the Holiday Inn Express if they have internet access...
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