Saturday, September 02, 2006

9.02.06, The Long Arm After Sunset

[during daylight]

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

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

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

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

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

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

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

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

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

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

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

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

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

4 comments:

[disenchanted princess] said...

Forgive me if this sounds too insensitive and/or overly simplistic, but it'd be a bit terrifying if you never spoke of your mortality, or said anything about your thougths on dying.

They are indeed tough to hear, especially juxtaposed against the very image of 'the otherwise healthy, well-groomed 38 year old male.' Maybe precisely because it blurs the image with the reality . . . that looking at you I can pretend that you're fine. Maybe you take too many 'vitamins' or something. But as soon as you start to talk about dying, your death, I can't ignore it. The cute little peach pills are toxic to cells. The ones that look like M&M's help to keep the peach ones from killing all your cells, and hopefully only the bad ones.

I have to deal with my feelings and fears on the diagnosis, prognosis, the bleekness of it all - all the while knowing that I don't know the half of what it must feel like, what you must be facing. How can I comfort you? What can I do to make it go away?

As a friend, it'd be great to see if you in some superhuman fashion were able to extract only the good and positive things from this. That would save me from having to get my act together, to be functional and possibly even strong if you needed me to be.

Not talking about dying doesn't make it any less real. Shying away from fear doesn't make it disappear. So lets talk about it. Please don't ever hesitate or apologize for a 'heavy' blog.

Anonymous said...

i wish you had some option of a detour from this path. i know you're facing it (courageously), but i know that no one in your life wants this, least of all you. I HATE IT. it's still unbelievable (and deniable) as a bystander - so i can't imagine what this must feel like to you and i wouldn't want to insult you by suggesting such. i will keep wishing as always - LESS PAIN, MORE QUALITY TIME.

tossing salads said...

hey scott. as much as i hate the words late stage, terminal, ill read, ponder and be grateful for the words and thoughts you give us. it can be as heavy as you need. as with DP im hopeing that through some superhuman effort that i know you possess, all the goodness in you will over power the bad, nasty cancer in you. yes, i know wishful thinking. we all have dreams. and as a side note i HATE the wasting of this disease. it sickens me. its not bad enough that you have to die but wasting what a fucking waste. i love you and am sending you all that i have.

Slarry said...

Monday September 4, 2006

Wallace Stevens

She sang beyond the genius of the sea.
The water never formed to mind or voice,
Like a body wholly body, fluttering
Its empty sleeves; and yet its mimic motion
Made constant cry, caused constantly a cry,
That was not ours although we understood,
Inhuman, of the veritable ocean.

The sea was not a mask. No more was she.
The song and water were not medleyed sound
Even if what she sang was what she heard,
Since what she sang was uttered word by word.
It may be that in all her phrases stirred
The grinding water and the gasping wind;
But it was she and not the sea we heard.

For she was the maker of the song she sang.
The ever-hooded, tragic-gestured sea
Was merely a place by which she walked to sing.
Whose spirit is this? we said, because we knew
It was the spirit that we sought and knew
That we should ask this often as she sang.

If it was only the dark voice of the sea
That rose, or even colored by many waves;
If it was only the outer voice of sky
And cloud, of the sunken coral water-walled,
However clear, it would have been deep air,
The heaving speech of air, a summer sound
Repeated in a summer without end
And sound alone. But it was more than that,
More even than her voice, and ours, among
The meaningless plungings of water and the wind,
Theatrical distances, bronze shadows heaped
On high horizons, mountainous atmospheres
Of sky and sea.
It was her voice that made
The sky acutest at its vanishing.
She measured to the hour its solitude.

She was the single artificer of the world
In which she sang. And when she sang, the sea,
Whatever self it had, became the self
That was her song, for she was the maker. Then we,
As we beheld her striding there alone,
Knew that there was never a world for her
Except the one she sang and, singing, made.


Dear Mr. Jones:
This is one of my favorite Wallace Stevens poems probably in part, because it reminds me of you. Your impactual words,
your uniqueness as an “artificer” - a creator of words, poetry, philosophical theories and thoughts that continue and always have inspired me.

I don’t imagine you walking down a shoreline though, more likely the red rocks of Southern Utah or sitting at The Bauhaus Cafe, either hearing or reading a phrase or thought that inspires and resonates with you.

The poem is filled with conflicts; of chaos and order, imagination and reality and one I just realized, that of ( your) presence or absence.

Please know, dear brother, that you will always live on through your words. I cherish the gift of your words, writings and the dedication and time it takes to put them on paper. That is one of your “songs.” And more, there are many who continue to watch in
awe, as you continue to stride, to create and teach us.

Thank you so much for that. My hope is that you will be free enough from pain, that you will be able to write what you want
Create and formulate your theories and thoughts, even as this senseless cancer continues to eat away at you. You are strong, though-- more times than not, beating it down and doing things your own way as much as possible. I can’t even imagine how difficult this is-- but I am aware of your strength and courage and strong mind. Of those, I am certain.

Loves,

Sheri

Thank you for the tips on the procedure. I'll be in touch soon.