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.

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.

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.

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.

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.

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):


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?


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.