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...

Friday, June 30, 2006

6.30.06, Dada and Distraction

Franky Scale for today feels like another variable score, a 6, a 7, a 6. Currently we're looking at the world from the 7 side of things and am, I am, we are thinking of heading into NYC to take a look at the Dada exhibit at MOMA. Seems entirely appropriate with the not always stated but everpresent theme of the absurd that runs through the blog, and more accurately through my Life since diagnosis day and all the days of working to accept and understand and plan since then. Plan to be normal. Plan to live in the most spontaneous way possible.

Being elsewhere is not allowing a lot of time for me to post, so even though talking about Buddhism and the insight paradox of "life is suffering" and "suffering stems from desire / attachment," paired with the question I always have of "Doesn't a desire to exit the cycle of rebirth and attachment to the idea of not suffering contradict the whole idea of 'rid yourself of desire and you rid yourself of suffering'?" is desireable. Or something along those lines. It's not happening today. All of which relates because the idea of not being attached to this world or this life, well, . . . you can figure out how it might apply. I'll keep pondering and thinking of it in post-form, until I post again, until then, Dada.

Thursday, June 29, 2006

6.29.06, A Screaming Comes across the Sky, or Not

Once again, the last post, yesterday, is a novella, so this one is flash fiction. Franky Scale is a bit wobbly today, back and forth between 6 and 7. Some of the "6" portion might be due to the fact that my next batch of chemo drug #1 (of the 3), the Xeloda, which I take orally 2x a day @ 500 mg (14 lovely days of it) arrived from FedEx. (Someone might save money on the deal, I don't know & it isn't me, but my insurance company "requires" me to buy this drug through a company called CuraScript, a mail order drug company. Either buy it from them or we don't pay for it. Gee, thanks guys.) (...part, too, honestly, is GI distress and some humidty/heat adjustment...but) That could be it, all I do is see Xeloda pills and I start with my Pavlovian response, (pre)response. Remember Tyrone Slothrop from my favorite novel....? We won't push the connection too far; yet, the allusion stands.

Tomorrow's blog, I think, is either on the paradoxes of Buddhism or on why we like to, need to, use euphemism.

Wednesday, June 28, 2006

6.28.06, On Comments, Symptoms, & the Angelus Novus

[my god, i just realized this is a long post, so i'll let this serve as tomorrow's content too, then i'll just post numbers or something short. -Mr. J]

Let’s start with the scale today. Franky Scale: 7; doing well overall, though some strange and intense fatigue arrived at about 11 a.m. and kicked my butt into bed for about two hours, and in the sleep came dreams, but those later. Even after twelve weeks of chemo (having just finished the 4th three-week cycle) and this f-word of tiredness, I’m not really used to it. I can have a finger on my laptop trackpad and suddenly fall asleep — that kind of sleep that happens when you’re in a lecture boring you to unconsciousness, I can go sit on the toilet and a minute, two?, three? later realize that I just fell asleep. That’s how it comes, no warning, just effects. And then with sleep, I at least feel guilty half the time, like “Ah shit, I can’t just take naps all the time! That’s totally unproductive,” and somehow forgetting that other part of my brain trying to say “Take a nap, you moron! You’re dying of cancer for Chrissake.” Oh yeah, that’s right.

On the thread of sleep:
I have really welcomed the last set of comments to the blog. At last, I see a few people from different parts of blogland, cancer blogland that is (sorry, I’m not a big fan of the word “blogosphere”), are coming together, and some larger sense of community is being established. Not in the cheesy sense but rather as geographically distanced individuals who share a sense of an entirely senseless grief, one that looms always a little larger for some of us, sometimes daily, until, I assume, it will explode. It’s good, then, to see such people come together, talk about it, and then spit in the face of that looming. A second point is that in addition to setting up the blog as a means of establishing better family-friend communication, there was a wish to “help out,” perhaps to speak to someone who was lost or had a question or who was just coming to their own personal degree of feeling fucked up — how else are you going to describe this? — and shattered. In many ways, like I do. What do you do with that news, that diagnosis, your “new life” that is condensed into six months or a year’s worth of payments, payments of various size, and payments in reverse. Now, I’m starting to see commentors, as in the last group, with a family member dealing with pancreatic cancer. That’s reason enough to keep writing, not that I’d stop, but even if smaller more mundane questions never arise between us it's worth it. Then, too, or finally, there was the question on symptoms. This last question might take a whole blog of its own but I’ll give at least the outline of an answer this evening.

On Symptoms: They Arise in the Night
Remember that line from Buckaroo Bonzai, where John Lithgow’s character, John Bigboo-tay, is rousing the troops and saying “History—is made at night! Character—is what you are in the dark!” Well, me too it seems, with cancer. In waking life everybody gets stomach aches, strange bowel issues, gas, some kind of pain now and then, right? So why worry? It’s probably stress. We all have too much stress, especially all the overly self-conscious and neurotic academic types I know. Could be an ulcer, IBS, who knows. But within my memory, maybe late 2004 and definitely in 2005 I’d get stomach pains at night. The “night” part is key because daytime distractions like work are just that, and passing over pains is easy. Part of life. My mom’s line, and Nietzsche’s “If it doesn’t kill you, it’ll just make you stronger.” Good ole Puritan thinking, I always thought; until now. Now I think, some kind of sick linguistic-cosmic irony.

As it turns out, joke’s on me. I’d wake up with a “stomach ache,” and I don’t even know where my pancreas is at this point in my life, so it’s just a stomach ache. They would be so intense sometimes, however, that I’d wake up in the middle of the night. It would break through my sleep and often I’d have to curl up in the fetal position to ease it as much as I could, until sleep would return. Or I could have a drink. Who knows? Anything might help, and when you’re that tired… Apparently I masked these pains and coped in various ways without ever identifying anything until the summer of last year. A friend was staying with me and during the, say, five days she was in town this happened maybe twice. I’d get up, pained look on my face, eyes probably gray if the lights had been on, and I’d find enough bed space to curl into my little ball of waiting. My friend had the presence of mind to point out that this might be somehow abnormal, that usually people don’t get pulled from REM sleep by stomach pain, and that maybe, just maybe, I should see a doctor.

Say August of 2005. So in November or so I went in, tests began, and as I’ll write about later, for the various reasons that make pancreatic cancer so hard to find at any early stage, it took until March to diagnose it. The Big Casino. Then I got the Call, the GI specialist I’d been referred to — twin brother of my primary care provider — told me the CT scan and the EUS (endoscopic ultrasound) said pancreas cancer. Tumor about 6-something by 2-something cm. Me: “I guess that’s serious . . .?” I wonder what he was thinking when I asked that brilliant question. Those were the symptoms that did it, finally got my attention, and the luck of having a friend around with more sense than I.

Bad dreams:
As I said above, there came dreams today. Odd ones. (Another Frank story: There was a time when if you woke up in Frank’s house and started to say “I had this really fucked up dream where….” and the rule was, Frank would roll his eyes, and you’d have to pay a quarter or you couldn't tell it — nobody’s really that interested in another’s dreams, unless you link back to our ongoing underlying psychoanalytic thread. You gotta pay for it or it doesn’t work, Lacan would say.) Anyway, in my story, today I was dreaming about death, and this freaked me out because my dreams are almost never about death, especially not since M20, diagnosis day. So why today? Is it an Ambien come down since I’ve not taken any for three days in a row after doing it every night for two months? A residual high from the stuff? Is it deep, metaphysical, and meaningful? I prefer to think not. (Kubler-Ross stage: Denial? I don’t think so.) Rather, I think the oddest thing is that I haven’t dreamt more about death recently.

More on Sleep, and Poetry:
Whence the poem (below)? All poems are about life and love, at least from one angle — the gaining or losing of both, the fear of one or the other, and logically this brings in death, sickness, sadness, more fear. A poetry teacher I had once said “Fear of loss is every lover’s fear.” How does that relate? Not sure really, but it seems to fit into most poems, through denial and negation if not by more explicit means. Here, too, of course, it relates to cancer too. The blog subtitle, and occasional distraction. We think in happy denial, sometimes, that that’s why we’re here, our cyber raison d’etre. (Yeah yeah I make my living talking & teaching poetry, and I can’t seem to stop writing it, but it’s not just that. Well, maybe not.) Intense dreams, daytime naps, waking into thickness, like the first moment you step out the Exit of a movie theater after watching a matinee, the blinding light and then the clear recall of where we are — all these bring me to think of a poem I did a few years ago. Done in upstate NY, in fact, so there’s one more thread to the now for the meaning finders. In any event, there’s humor in the poem, I think, and hopefully this comes across. If not, then it’s simply another distraction and it’s more fun to think about than what it might mean to wake up at 3 a.m. and curl up in the fetal position.

[my blog/HTML skills are weak still so instead of regular indents on certain lines, imagine them where you see em-dashes, for drop lines. and if sheds any light, I wrote this while I was taking a class with Benedict Anderson, so.]

Angelus Novus,
—not by Paul Klee”

"Every passion borders on the chaotic, . . . on the chaos of memories."
—Walter Benjamin

I take long naps, sometimes I dream.
I dream in Technicolor, sometimes in German.
Bin gar keine Russin, stamm' aus Litauen, echt deutsch.
In my dream Ben Anderson is there, naked
as though he is about to move this way
toward something he is contemplating fixedly,
his eyes are staring,
--------------------------his mouth is open,
---------------------------------------------------his wings are spread,
and he is running blithely clowning after me,
this is how I dream him, but in my wish fulfilled
his face is turned toward the past,
where I see a semester's writing he sees
the wreckage of papers past piled ominously at his feet,
pushed forward, paper by paper, by a force
I cannot call progress, but perhaps
My angel, would like to stay, awaken the dead,
make whole what has been smashed,
but a storm is blowing from Paradise,
he is naked, I am not,
his wings wrenched open in satiric violence,
this storm seductively propels him into my future,
he is menacing otherly comical, I afraid to ask
of that to which his back is turned, while
the stack of scribblings before him grows dreamward.
This storm is what they call progress, but wait,
now he has recognized me, am I no longer his slave?
Not even the chess-playing dwarf of historical materialism
can save me
-----------------------I fear.

Ithaca, NY (the poem, that is)

Tuesday, June 27, 2006

6.27.06 Arrived in Gotham, Kind Of

Hi all. Not really in Gotham City but in LI instead. Close enough I think, enough some peace and quiet, however weird Long Island quiet might be, and still close enough to get into the city. More anon.

Franky Scale today, despite some longish travel, was about a 7. Not bad. I love no chemo drugs. Till Saturday, thank you cheebus.

So I'm here safe and sound, all my dear family members; someone pass this on to mom.... and I'm going to have to stop here since I'm typing words backwards and about to doze on my tracking pad. Tomorrow.

Monday, June 26, 2006

6.26.06, The Lower Case Connection

[Since I posted this, below, later last night I'm going to leave it up as today's post, give people a chance to read it. I'll try to get up a Franky Scale number later on — I'm still too much feeling a sleeping-pill hangover to give you a good number now. And the rest of the day is flying back to New York, where I'll be for the rest of the week. P.S. you may have noticed I've had to turn on "comment moderation," but please don't let that discourage you. Most every comment still goes up, it's just a complicated world. -Mr. J.]

Tomorrow off to NY, a break into the cool and dry weather I love so well. Ahh. No need even for an AC. ..... uh. (even here in the emerald city i can feel my forearms stick to the desk between keystrokes, makes me think of all the random places i've tried to write something out or get something down where the weather can be accursed, granted that "humidity" here is a joke, but new york or boston, seoul, bangkok — forget about it, as they say, bloomington, rochester and ithaca, god do i hate humidity. if hell were to be catholic, there might not be flames and burning flesh but humidity and sticky flesh instead...)

Who knows at what point I will actually find a thread tonight, or whether I will, and so if its helps the sententious out there or simply the plot-driven, try to imagine this as a real-time while-I-pack post: scattered, disjointed, almost MTV-ish, the Mekons in the background, here and there at once. Reporting on a day that's almost over but also never started.

Btw, the Franky Scale was about 8 today, really pretty good, though Seattle was uncharacteristically "warm," or simply hot. Somewhere in the low 90s. For those who only need a number, you're excused ;-) (of course this is a joke...)

Sick in East: You could look for cancer links, the blog about cancer and all. In terms of food for thought I recently learned that the friend of good friend (someone on the East Coast in fact) who was diagnosed with pancreatic cancer at just about the time I was, has been doing really well. Caught it early, successful surgery, small tumor, and so on. You know what? I've never met this man, he's older than I am, different generation, different profession no doubt — but the thing is that I care when I hear about him and his state. I'm not yanking my own chain, it's just bizarre to me, that's all, you can hear the new agers talking about Connections now, yes capital C. When I hear he's doing well I feel better or I feel glad, genuinely glad. (We could get out the analyst's tools, sure, it still comes back around to my narcissistic needs maybe because I want to see myself in him — he gets better and that means I'll get better. Yes, Dr. Melfi. That's too easy though.) I think rather there might really be some connection, however imaginary, however lower case, that has shrunk a few places in the world, with a few certain people to be found there. And there changed to here.

Sick in West: That's the story of one person, one that's heartening, one to feel good about, one we are — or, I, am ready for. There is another story, another real person who is the friend of a friend, maybe once more removed than the man back East. This one is about another man, this one in Seattle, one whose information was retrieved for me by a another good friend. Phone numbers, email address I think was there, and one other thing, was it actually his address? Anyway, the point was that my friend and I had talked about finding someone to connect with — my own little support group — and in part, as a result of the Double Whammy diagnosis referred to previously in the blog (first whammy [sp?] being "you've got cancer" and second whammy being "oh, and, btw, you're cancer is one of the most fucked up types you can get." [dramatic pause for effect]), I'm really not interested in talking to just anybody with cancer. I of course want to talk to someone who is also apparently paddleless, like myself.

My friend found such a one here, with the same diagnosis, same cancer, and when he was diagnosed a year ago he was given even less time, "given time". . . who gives time?. . ., given less time than I was. Something like three months. Of course, I could feel good about the fact of his survival for that long so far because it can either suggest I might do better than they say, too, or simply just out of gladness for him. A year. A whole year. Like a third my oncologist has mentioned, a tough rancher in Oregon who was about 18 months past due, at least he was last time I checked about two months ago. Hardy, keeps living his life, working on the ranch, doing chemo, trying to just keep going. So far so good. You hear the inspiring stories, right? I guess the others don't get passed on. Well.

I guess it was run by him and it was all right for me to call at some point. After 6 weeks I was still kind of nervous to do it. What can I say? It's weird enough to tell anybody you're sick like this, let alone just to be sick like this, but imagine calling up a stranger: "Dude, my friend says you're gonna die from wicked bad cancer. Sorry, me too. Let's talk." Lessons in awkwardness, or just insensitivity, or maybe there's just no out. It's all a bad joke. If you'll forgive another Sopranos reference: Furio's father in Italy, dies of cancer in season 4, go figure, and Furio can only say ". . . The cancer don't respect nothing" or nobody. So I hadn't called as of a few days ago because I was, perhaps, emotionally unprepared, even though there was so much potential help there. Too, what if he doesn't feel well when I call? I know that feeling to some extent. Get to the point... The reason I bring this story up is in part because it represents the "other" of two people I've heard much about with pancreatic cancer, and because the good friend who got the numbers called yesterday.

We talked about a few different things, it wasn't like she called just to say this, but he's dead. Just happened. There is nothing to analyze about it. He got a year, 9 months of winnings. That's three times what they "gave" him. I watched Frank throwing dice about a month ago, you stand at the table, shake, throw, and wait; you pocket your initial bet and play only with your winnings. No, there is no moral to this story, it's just been on my mind. It's not an answer, Frank, but it does speak to the question you put out in one comment, a question that cut through all the bullshit, something like how long does it take every day from when you get up to when you start thinking about the Big Casino.

Time to get my bags, I always put off packing until the last minute. Why is that?

[NB: NPR junkies among the readers might have heard a story this morning about/by a journalist who is also dealing with late-stage cancer, who had his expiration date given to him, has beaten that date, and sounds like he's doing what he can, like most of us I suppose. Just trying to keep going, working as much as he can, etc. His story was solid, realistic, and so I've added a link to that blog--look up on the right side. -Mr. J.]

Sunday, June 25, 2006

6.25.06, Perfect Weirdness & Family

Franky Scale, maybe posting the Scale first is anticlimactic.

The phonecall that spawned a horse metaphor, someone a lame one. We discussed this at the time and that was precisely what turns it into a better than average and weird title. So it's there, yesterday. I remains today for all to see — despite that I had to turn on "Comment Moderation" as a blog function, which I hope you won't let scare you away, post! post! just post away as ever before and nearly everything will pass I promise, it just had to come up for now, not to worry — as do the comments.

The third sister post on whether the horse metaphor / comment should be taken or rather "how it should be taken" rhetorically, is simply perfect. The variety of (mis)readings that cross paths here, though not only here are fantastic when seen with sufficient psychological distance. I love it.

More on this . . . just wanted to make this observation first now here though and then. I'm going to go hunting for this dream-poem I have in a notebook somewhere called "Contemporary Family History" about all the equine characters of this mistale.

FS: 8, more good weather, warm & too sunny, breakfast & coffee. Much less unpleasure than most days, thank the Horse. Day three free of chemo drugs. Like pure enlightenment.