Pharmako/Thanatos, or How I Died

Dear Reader:
Please note that this is a posthumous post.
Dale wanted to finish his Thanatos posts but wasn’t well enough or focused enough to do so. He asked me to put something up as best I could.
After he passed I went into his journal and was able to cull what you are about to read. At this point in his illness he always kept his journal nearby along with his favorite pen but his handwriting, frequently hard to decipher in the best of times, became more and more challenging to read.
Please note that, as you will read on, one of his last remarks was “The pain outran the pen.”
I suggest care as he takes you through these last weeks. It can be a rough read at times.
– Laura, Mantis Hill

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December 2017 : “Existential Disintegration”
January 2018 : How I Died – The Final Poison Path

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December 1st – at ER in Grass Valley

Because of shortness of breath
(Dr Kelley worried about pulmonary embolism)
But the CT scan didn’t show any

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“In a war of ideas, it is the people who get killed.”
– Stanislaus Jersey Lec
In “Unkempt Thoughts”

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Today December 3

Marici visited
She and I spent enough time just “hanging”
where “hanging” covers quiet conversation
to sleeping – nodding in and out.

And Scarlett: it was difficult not to scare her off
from looking at her or calling to her
to addressing her from across the room
but I was determined that something move
So I asked Marici to please bring her daughter to me.
I had asked Scarlett when she came in with Dustin if she’d seen any mushrooms.
At first she seemed very excited
but then when she saw who was asking her
she just wilted behind her mother.

Did anybody think the band would be able to get it right this time?

Mushrooms.
So Marici was savvy enough to put Scarlett between herself and me.
I grabbed Scarlett’s hand which at first she seemed to like.
It all seemed very exciting.
She was just beginning to spook
when I looked her in the eye at very close range
then I said
“Scarlett, I’m very sorry that I’m too sick to get down on the floor and play with you.”

And I think we made some progress.
We tried to find a password we could remember.
Pass.
Word.
She alternated between obviously loving the voice,
but again being frightened
and embarrassed into total silence
and she looked at my arms a lot.
In my mind they were the skinniest type of transparent
and like a big play house.
Anyway I think there’s possibly a seed there
that might be nurtured in the future.
And so for that –
YES!

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December 4th Monday

Margo from Hospice Transitions here

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Sun and what is this? A poem.

It was a day of grace –
in the grass and spring rains

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December 5th

It’s late but I’ve been sleeping, napping, shorter and shorter
It’s possible pain relief

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December 6th Wednesday

11 am Cream of Rice
Today, to play
Then later that night:
Dale: “I’m scared.”
Laura: “Of what?”
Dale: “Existential disintegration.”

[I’d just been telling my therapist earlier that afternoon “It’s like watching him disintegrate.” – Laura]

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December 9th

Back to the ER
This time for scan of the brain
They are looking for a “border crossing”
Scan is clear

December 11th

Agree to hospice

December 12th

Hospice

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Notes from Laura

Dale’s last actual entry in his journal that I can read is December 6th
He asked for his journal and kept it by his side but didn’t open it to write in

So here are some of my notes:

12/14
Dale: “I’ve acquired a trunk!
Laura: “What’s in it?”
Dale: “Virtuous things.”

12/15
Dale: “I’m trying to figure out who I’m looking for.”
And later: “Blind-sided by the glitter of ivory!”

12/24
Dale: “We broke the spell… there’s no dark windows over there.”
And later: “Do you know the date?”
Laura: “What date?”
Dale: “My date with destiny.”

12/25
We’ve been reading aloud from Rough Cuts & Kindling:
Dale: “I’d like a list – I’d like a passenger list of this place before we go on –
The passengers they ran off and triggered…”
(long pause)
Laura: “Triggered? What?”
Dale: “I don’t know – the end of some list. End. Of. List.”

Then he added: “The colors of nouns… after you… I don’t know if I can capture the glowing.”
Laura: “The old poet is stirring inside you. Nice to see that seeping forth.”
Dale: raises his eyebrows like a shrug

12/29:
Dale: “What time is it? Can I swallow any poison? Are you keeping records?”

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Note to you, dear reader:

Much of what you have read on these pages is all about pain. And more than painful.
As Dale said to me on January 11th “The pain outran the pen.”

I wonder if he’d been able to manage the pain and continue writing… that was all he really wanted those last few weeks. Unfortunately for both of us, for all of us, it wasn’t possible.

Most of the entries in November and December are fragments and about the pain he was in. If you don’t understand them, you are not alone. I was there and much of it doesn’t make sense to me either.
Massive amounts of morphine didn’t really seem to touch the pain.
And then the radiation made him nauseous and by my best account he never recovered from that.
He ate very little from then on. One bite, maybe two.

October 31st. That date marks the first incidence of nausea and after that he couldn’t keep down much of anything other than a few spoonfuls of cheerios with sugar and milk in the morning. He was hungry. He wanted to eat. I tried to encourage him but it became a useless task. Eating made him retch and retching caused off the scale back pain.
Not eating for so long caused his sodium levels to fall dangerously low. Thirty percent of patients on Stivarga have low sodium levels. The low sodium sent him into delirium. The delirium was further aggravated by the metabolytes from the morphine.

Once he went on hospice we stopped the Stivarga and they were able to transition him off the morphine and onto methadone which eventually provided superior pain control. And blessedly his mind began to clear.

Some of you may wonder why they didn’t prescribe methadone sooner – as I understand it methadone and Stivarga (or St. Ivarga as we called it) are contraindicated.

The second thing he asked me on December 6th when the fog that had wrapped itself around his mind began to clear was “What’s happening with my date with destiny drug?”

So the following day we initiated the process by asking the “first doctor” to begin the end of life process.

Getting the end of life drug – the ultimate Poison Path Elixir – became a high priority.

In California we are fortunate to have that choice available if a doctor assesses you have less than 6 months to live. But there are multiple hoops both you and the prescribing doctors have to jump through. You need 2 doctors 14 days apart to certify that you understand what you’re asking for and that you are capable of drinking the elixir down on your own.

By the time Dale was close enough to actually getting the drugs he was having difficulty swallowing, even a teaspoon of water was enough to send him retching and spitting, and he’d wake me during the night telling me he was worried that he wouldn’t be able to swallow the elixir – he had to drink 4oz in 90 seconds.

It was a concern we all shared.

Fortunately with the support and encouragement of all of us present, he courageously swallowed that final Poison, managed to keep it down and gracefully was able to end the pain that had encompassed him for so many months.

	“Sometimes poison is the medicine. 
	Sometimes the action of this medicine 
	is as gentle as waking up, 
	but sometimes the world as you know it 
	is dissolved in a torrent of seeming madness, 
	so that another world might become visible.”

Dale passed on January 13th about an hour or so before sunrise.

I think his daughter put it perfectly:

“True to his nature, my father tested the limits of his final potion, defying expectations and breaking records. Some time between 6 and 6:30 this morning he crossed over to the great beyond.”

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Gate gate paragate parasamgate bodhi svaha!

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Here at Mantis Hill we miss him terribly.

I continue to look to his words for wisdom, beauty, magic… and consolation.

I hope you will do the same.

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	Blessings from the Universe for All.

		Laura Pendell
		Mantis Hill
		12 February 2018