Pharmako/Thanatos June 2017

How I Died: Journal notes June 2017

***
1 June
Time to get the will in order.
Which is to prompt one to consider one’s stuff, from clothes to tools to art to books to anything else that takes up physical space, to assets, to real property,
to obligations,
to the necessary organizational work of finding pertinent documents: book contracts, deeds of trust, all that stuff,
and personal papers: notes for books and articles, correspondence, banker’s boxes full of paper, of perhaps minor, but not zero, literary value. Letters with other poets, other authors, editors . . . and also wives, children, lovers—what to do with them?

And how to disperse gifts and property—there are so many could use a hand.
And finding executors, and those to accept power of attorney.
Yuk.
And e-files and accounts—have to have passwords listed for “electronic executor.”
And then there is a literary executor.. have to get my files somehow organized by book and article. In some way that is simple and obvious.
Yuk.

Tomorrow, to think of that: today I want to write.
Want to, but too tired.
And too sad.

***
7 June
Two months ago I was writing every day about sub-Roman Britain. Like I’d been given liberty—shore leave on an enchanted island. Now there are gaps of a week even between journal entries. A wave of melancholia will pass over, like a dark cloud suddenly obscuring the sun. They seem to come out of nowhere, sometimes accompanied by a slight nausea. Hello Jean-Paul, it’s been a while. Clinic appointments and treatments take precedence over all else.

Stopped near Camp Beale on the way home from UCSF and took a sample from the dark rocky outcrops sticking up from the meadows. Some of them remind me of stone circles I saw in Wales. I thought it might be basalt, but this was meta-volcanic: more like a greenstone, much older than the Sutter Buttes eruption.

***
13 June
Back at UCSF. Had a PET/CT. The used a radioactive fluorine isotope attached to something that passes for glucose, given after a day of fasting. Because cancerous tumors are more active than normal tissue, cancerous cells absorb more of the glucose. The detectors, precision high-tech themselves (looking for the gamma rays from the positron/electron annihilations), and software to create a three dimensional map (taking into account lag time in the detector tubes) from not all that many events, and of course the mean distance an anti-electron travels before annihilation (not far).

Essays to write: “Earth House Hold – Fifty Years After.”
Let’s take a look at Snyder’s seminal essays and weigh in on the progress of the Revolution

***
BAD DREAM # 4067
Traveling by air I was given, by chance it seems, the TSA pre-check. I didn’t have to take my shoes off or anything. They just waved me through. So I said to the TSA guy, “Don’t you know who I am?”
And he said, “Oh, we know who you are. We just don’t care anymore.”

Did that really happen, or did I make that up?

***
16 June
Defending the Quarterdeck. Not a bad title.
or.
Watching the Sand Fall

The glass was turned long ago for each of us. But waking up to pain with first thought in the morning gives the sand an extra weight—making it more like gravel than sand. Noisy gravel.

Or:
The pirates have stormed over the sides and boarded the ship. The captain and his mates have retreated to the quarterdeck. We are ready for a siege but there is no plan or strategy to retake the ship.

Self-advice:
“Try not to lose on time.” (In the chess sense.)

***
19 June
“How I Died” Now there’s a title!
“How long a book is it?”

what is needed, always,
for any of us, in such extremes,
is an open structure: malleable plot lines,
lots of room for cadenzas,
even a new movement.

That is, more or less complete on each page.

Usual plot devices, such as the cliff-hanger, or a sub-dominant chord that needs resolution,
is rather to tempt fate.

Still to do:
“The Public Drinking Fountain”
a rather beautiful idea now becoming scarce.
Privatization is the perversion of society.

Still to do:
“False Pregnancy” or, “The Restoration”
that once again we believe ourselves to be rational animals.

People will deny science to defend materialism.
And will deny history and their own senses to maintain the myth of rationality.

I have not recorded any of the medical shit that’s been going on. Starting chemo. Infusions on the cancer ward. Side effects.
I fear for Laura. I am little comfort to her these days. Our love is amazingly strong and our humor is good—we can still make each other laugh, and do—but her fortitude astounds me.

***
21 June Solstice
Hard day. I skipped a pain pill. I was reading and forgot. Lots of aches and sore sports.
Nothing particularly to compare with BIG pain, but it is wearing in its consistency.
Also it is prostratingly hot: 105 degrees and humid enough that the swamp cooler is mostly ineffective.

Stef is back in the hospital. That dear wild woman. We’ve been in the hospital at UCSF at the same time several times over the last two and a half years. So hello dear one. Heard you are having some hard days. .. I had a reverse myself. Luck. And blessings. D.

My daughter called. She asked how long I had to take the chemo. Had to explain to her that it wasn’t a cure, more like a rear-guard action. Buying time with however much of the chemo drug I can tolerate.

Which reminds me. All that time I saved with time-saving gadgets … is it in a bank somewhere? Can I draw it out?

***
23 June
Awoke, dull low-level pain—skin around my lower torso hyper-sensitive. Kind of like shingles coming on. But I think it is a reaction to the chemo (Sorafenib).

I guess I’ll probably die in pain. Cancer in bones has gotta hurt. It’s not the pain I’m worried about, but the lingering.
My teenage fantasy: falling from a great height… even an airplane .. the “existential” reality of the fall seemed perversely appealing.

Nowadays, when such fantasies flit by, it is usually a firing squad. I would HATE HATE HATE being strapped to a gurney.

OR, there is always the stutterer’s noose, like Phil Oakes. That’s why we stutterers keep being reborn as stutterers.

OK, tomorrow, I will get to work. Start cleaning and sorting and putting away—there are piles of books and papers and clothes and stuff from pockets, and shoes on every flat surface and most of the floor.
All in a heat spell.

Sure. Tomorrow.
Maybe I can hire some help, though even that seems beyond my strength.
Or will.

POLITICAL:
Heard a Trump supporter say he liked him because he was “honest.”
Sometimes it is hard to have compassion for all deluded beings.
Some support him from spite, surely, for having been vaguely insulted.
Some, nakedly and shamelessly, for profit, for more wealth.
The predatory can always find a victim with less street-smart, or with less intelligence, or with too much trust, or with less legal power, or less money, and fleece them.
We could try to kill them all, but without changing the competitive, greed-based monetary economy, it wouldn’t help.
Other than some sense of moral justice.

***
The side effects of the chemo… tolerable is not pleasant. But no cure.
It’s like Nathan Bedford Forrest cutting Sherman’s supply lines when he was in Atlanta—it slowed him down and retarded his movements for a while, but Sherman’s deadly army was quite intact.

At some point there will be a trade-off between quality of life for more of it.
From what I hear, or hearing between the lines of some of the doctors and nurses, there is a lot of variability here.

The mistake that healthy people make when imagining this scenario, sometimes shaking their wise sagely heads when hearing of the extraordinary and desperate measures that some take to prolong life, is that the choice is a private one. It’s not.

When Dr. J., in our medicine circles, pain and paralysis gradually claiming more and more of his body each month, made us promise, on psychedelic honor, to put a pillow over his face when he couldn’t wipe his own ass, we agreed. But when he said it was time we didn’t agree—we told him he was still too important a part of the magic of the circle.

He tolerated us for several more months, maybe even more than six, then said enough was enough, that he was leaving in three more days. He died in his sleep. Or something like sleep. It wasn’t suicide, it was just like a shaman taking flight and not returning.

     Every enlightened Bodhisattva knows what to do 
     when his eyes turn to the earth.
     What will you do?

     --from the Miscellaneous Koans

***
23 June
The lack of energy is striking. Not so much being sick, more like an old vintage car, not primo but without a lot of visible damage, just out of gas.

Malaise, Depression, Fatigue: the three wicked sisters.

***
24 June
It occurred to me that the kind of shitty way I feel right now may be the best I feel for the rest of my life.

     Drama queen!

(sayeth the imp on my left shoulder)

Got to make the effort to call out for some help: house, secretarial, & land.

***
25 June
My goal is to maintain this journal as long as I can.
Call it “Pharmako/Thanatos”

     Drama queen!

Silence! There below decks!

The general permeability lets them in.

     “Is this all the crowd you could draw?”

As a balance the bird songs are really peaking, especially at dawn.
And I’m loving the woodpeckers.

Scalp is itchy, but hurts if I touch my hair, as if I had slept on it wrong.

Every room is collecting more stuff: books, clothes, boxes. It’s starting to look like one of those houses where old people live.

***
Politics:
Trump and his cronies are a total disaster. And the Republicans in Congress and the Senate are giving him a free pass. I can’t watch the news.

I wrote “The Triumph of the Lie” before the inauguration, and little has changed.

MYTHS: (#27..) Heard a man say, “what’s scary is that half the population has an IQ under 100.” Actually, they are not the problem. The problems are the ancient poisons: greed, malevolence, and confusion. They are equal opportunity diseases. It’s the smart and clever ones who cause the most suffering.

***

The HEAT has been debilitating. Triple digits for over a week.

Another paradox: air conditioning adds to the carbon load, creating need for more air conditioning. This is not a win/win situation.

Book to write: THE BOOK OF SHAME
The shame attacks are continuing, triggered by some obscure association, or by, it seems, nothing but a breeze. Some are from memories twenty-five or fifty years old, from an inept response in some quite distant conversation—words on the stairs coming by one more time. Another is just a bad line I put in a poem forty years ago.

They mix with the peeping songs of the goldfinches.

Shame attacks, micro, mini, and maxi.
Deep in a French cave, a wooly rhinoceros painted life-size on the calcite wall, an obsidian projectile point stuck in a crack as an offering, now completely encrusted with limestone. The sensitive farmer turned off his lantern so we could feel the cave in darkness. I climbed into an alcove that looked like a perfect acoustic amplifier and pulled out my Jew’s harp and sang and chanted a song to the calcite while I twanged. At the first note someone had said “what was that!”
The farmer knew, and waited until I was done, and then a bit longer before turning his lantern back on. He had a huge smile. The other tourists said “That was a beautiful recording, what a wonderful idea to bring an aboriginal recording in here and play it.”

And the next day at another cave, there being a member of the party who sang in a choir—a REAL singer—they asked him if he would chant and sing with the lights out.

That’s THAT shame. Duh! Triggered, as best I can reconstruct it, from Laura saying something about bats, me thinking then of caves, and then that cave.

Sigh.

     Waiting to find out what price
     You have to pay to get out of
     Going through all these things twice
     --Bob Dylan

Maybe I could start classifying the shame attacks, could write “The Taxonomy of Shame.”
The times you let yourself get walked on.
The times you made a dumb, half-conscious response when you knew better.
How about all the times you hit a wrong note? Jeez….
Listen, we all peed our pants and shat our diapers.
I been slapped. I been spit on.
My name should have been Matt, as in doormat.
Or that time sitting on the grass with friends and that dog trotted up behind me and lifted his leg right on my back.

     And I have been frequently sold.

***
It’s like a long freight train, coming into the yard, moving so slowly I can see each car. They are all flatcars and on each one a scene is being enacted. Right there, that car: that was a business deal I blew. When the next flatcar comes by it is a really clichéd simile I used in a poem forty years ago. If this train were my biography I should be on Aid to the Totally Disabled.

Oddly there are never visitations of events that were intensely embarrassing at the time, such as stuttering events: the time I called a girl on the telephone and had to hang up because I couldn’t say my name while she kept saying “Yes? Hello? Who is this?” Or stuttering my way though a presentation at a seminar. This train is all diddly-shit stuff.

I just . . . watch them trot through.
Even recording any of them is too much of a nod,
well, except for science.

     I never asked for your crutch
     so don’t ask for mine.

***

Then there are alternating waves of anger. I’m surprised I’m not having hot flashes.
I just had a wave of anger at my father’s smug and willful ignorance. “I don’t think our government would lie to us.” Or, after the killings at Kent State, “Well, they were throwing rocks.” Did I kill myself trying to wipe the smirk off his face?

Maybe.

***

Loving kindness. The Dalai Lama said that I think. Love your enemies. Jesus said that. Those who lie and persecute us are our teachers. That’s in the Shodoka, chanted every day in Zen temples.

Sigh.

***
26 June
to UCSF, to report on how I’m tolerating the sorafenib. Which is not well.
Skin rashes on face and torso, some hive-like eruptions on my forehead, scalp itchy, nipples hard and sore—I can only tolerate the softest fabrics. Chill-like goosebumps on my sides. The lower back pain is more like the sound of the surf in the distance.

***
meditation on grass: Carl Sandburg, Matsuo Basho. And my own, from long ago:

makes me smile
those grass roots
cracking cement

***
So we will quit the sorafenib for a week, until the skin reaction dies down, then start again at half the dose.

Going now for the other half of the treatment: infusion.
This is definitely “life on the cancer ward.”

Survival of metastasized liver cancer is not good, on the order of a year. But almost all of those people had cirrhotic livers. Survival rates are not well characterized for patients with healthy livers. One to eight years is the best Dr. Kelley will conjecture. I can’t say this to Laura or others, but my particular cancer feels pretty aggressive, so I think five years would be a fine goal. It could be more, of course. It could also be a lot less.

***
27 June Mantis Hill
Very sore. Right posterior rib area.. hurts if I take a deep breath, or if I try to lift my right arm. All I did was to bend over and reach out to pet the cat. Skin reaction still strong. Pain in hands and fingers.

***
28 June
Severe neck pain.. can’t turn my head very far.
then spent the day at the local hospital, xray and CT scan to check for “PE”
(pulmonary embolism).. Being extra careful… but it blew Laura’s day as well as my own.

***