oct pthans

P/Thanatos October 2017
October 2,3
Stanyan Park

Always busy. These trips to China Basin first 4PM for the MRI which took several hours.

So by this morning, October 3rd, with all the car time yesterday and all the MRI time (in and out, breathe in, hold, breathe out) I’m sore and would like to curl up for a few discreet tears.

Today Laura droves us across town to Mission Bay, UCSF’s “oncology central.”

Get all the blood drawn so Dr Kelley will have her labs in front of her when we meet in another hour.

It’s crazy.

Listen: give as much energy and focus as you can find for poetry and art, for music and science.
**

     Who is this?

**
Mostly, though, you go along with the program, which brings us to my situation.

First chemo drug didn’t work. That’s the bottom line. There are numerous new spots in the spine: nothing huge and obvious enough to explain all of my pain. But plenty enough to explain most of it in several different way.

Numerous spots in the spine, one in the lumbar: L2 That one is off to the right side.

We’ll try Stivarga

Once a day with food, no fat, side effects (30%) anemia, not getting up, fatigue, CA down P down watch for infection, watch for mouth sores, use baking soda/salt rinse, keep blood pressure log, your voice may change, nausea, monitor for skin allergic reactions

Trip home pretty sore and painful.

October 5th
Took 315 mg morphine/24 hours

Chris Hall and Rose and Fiona visited.
Chris asked if I would read from The Great Bay for his three classes at Sierra College Rocklin Campus. We agreed on November 20. But it will depend on my pain level. I hope to comply.
*[on November 20 I had to cancel.]

October 8
This pain management is taking an altogether too large a chunk of my time and energy – all packed for UCSF/Stanyan Park
Of course, we’re translating a more or less serial pattern of events into meaningful action which after all might be a stretch.

**
Monday October 9th

Morning: Fire on the mountain!

Electricity went out last night around midnight. Thought: not a good sign. Started smelling smoke.

By morning there was a lot of smoke but with the electricity still out we didn’t see what was happening until we got on the road.

Then we saw the smoke columns. Surrounded. Fire in October!

No time to turn back, we had to continue to San Francisco. We had medical appointments.
**
October 9th afternoon

We had left Mushroom, our laptops, all my extra meds and they are evacuating our street. We called our neighbor Trevor who rescues the cat and finds a boarding place. Grabs the laptops and the meds. So all is safe.

How competent! What a gift.
**
October 10th

4 hours under anesthesia plus 2 hours in PACU – all to embolize blood with nano-particles for tomorrow’s cement pour.

Spent the night on 6Long (Neuro-Transitional Unit).

Pain management was good. Every 2 hours or so, taking 20 or 30 Roxi. Hospital bed was good also, sides to put pillow against, raised back, soft mattress.

Lots of good care, a few miss-ups left stranded. Hope it was all worth it.
**
Wednesday October 11th

Felt pretty good in the am.

Then long day on 6Long waiting to get back to the 3rd floor for the “vertebroplasty” – a cement plug in T9
Pain management good. ‘Course I had nothing else to do but rest. A few emails. Didn’t even read much. Just rested with the Morpheus.

7pm: back at Stanyan Park

Laura reminds me that Dr Chin remembered me and the booklet of my Bodhidharma paintings I’d given her back in April when she did the biopsy. She has it on her desk – an honored spot.

Next up: IMBT radiation of T10 to L2. Next week.
*
October 9 – 11:

Wettest winter in history/hottest summer in history

Largest firestorm in CA history

From 0-117,000 acres in <24 hours

      FIRE STORM

*

Volcano in Japan     earthquake

	Some cities reported seeing dragons on the wing

Puerto Rico being left to die in secret, hidden by the death spasms of Donald Trump in terminal narcissistic meltdown into paranoia

The Republicans bear the brunt of the blame for they do nothing and he is their responsibility
*

12 October

170,000 ACRES OF CALIFORNIA ON FIRE

All my hopes rest on being able to balance the pain meds

Resting is easy
*

October 13h Friday
High pain this morning – very hard to get comfortable in bed.
Back pain (lower) about 6, 6 ½
*

To Do:
Jen contract, Jeremy: send drawings all scans, Jeremy: finish layout?
*

14 October 2017
On vampires:
We all have a few of these among our collected friends

That is, if you’ve lived a normal life with even a modicum of kindness and confusion after 50 or 60 years you’ve probably collected, among your friends, one or two vampires.

Their first (and salient) characteristic is a demand for special treatment – that they have to be treated differently than ordinary people because of … [ various causes ].

Which can be either trauma (these are the victims) or sometimes, some special gift – a gift of psychic sensitivity or of profound empathetic power. These people will demand that you walk on egg shells that you look ahead and self-censure yourself, that you don’t say anything emotionally or psychically shocking. In short, that they be treated as children.

It’s dangerous to have vampires visit when you are sick. Vampires ignore your condition.

They will drain your energy, ignore a request such as “I have to rest now.” And leave both you and your caregiver exhausted and reeling.

15 October

Isaac’s bday

[lots of calculations here about dosages – fills a page]

By noon I have come downstairs, showered, shaved, had a BM and have some degree of pain management. My day started well, took my MS Contin at about 8:40, back to bed, 9:30 BM, roxanol, then 9:45, 10:45, 11:45 took another dropper. About 15 mg of morphine. I have, you might say, high tolerance.

*
At the hospital in that little room on 6 Long with the a/c so loud and either too hot or too cold to sleep. Isn’t sleep considered an important part of the healing process? I mean, jeez.

17 October Stanyan Park
Note to me: write up the OD story and the ex-con story
[ ]
I asked Matt if he had found any of my Pharmako/Thanatos, he asserted he had.
After a while I got up my nerve and shrugged “Well, anything you like?” or “Well, what did you think?”
“Well,” he said, “on that one page I cringed.”
Matt added, “Where it said… ‘fast’.”
Whew. Great relief. It was supposed to happen that way. Thank you.

18 October
Got an email from Ofra. She was my first ever live-in girlfriend. She’d found my website.
I tried calling her. She didn’t answer but then called me back.

It’s so funny 
	that somehow she reached out 
when it’s kinda too late 
	for me to respond.

I think she went to the extreme, to Crown Heights, Chabad, where God is the “Holy Land.”
I’ll send her some scans of some pictures from more innocent times. I’m happy in every one.
I KNOW we had fights, but gee, for kids we had some pretty good times.

dp: write to NAB for more Great Bays. Be sure there are enough for the Sierra classes.

Maybe a good week to write to Nik.
Dear Nika:
I’ve missed you.

19 October

Dale, give this day to yourself. *[It didn’t happen.]

So: pain
So: 11:55
Home Care Nurses call here at the house.
12:55 Transitions and Palliative Care coming over. They interface with UCSF.
Good to have something local.

Too much of every day’s entries are about pain management.

Setting up Durable Power of Attorney, meeting with a Social Worker, they want the POLST form on the fridge. Bright pink. You can’t miss it.

What kind of response? Full treatment, Selective treatment or Comfort Only? That is, can we save you, can we save you from yourself, can we save you from the hole in the wall? I don’t think we will feed you, but, like – if I already blew up and were settling as a delicate ash – should you try to capture me with a bit of acrylic spray?
**
October 20th
Do you need any help? Yes, to put my shoes on. To stand upright after that astounding rain flurry. Almost an inch. All come down midnight to one.

Some people just want it established on the record that “help” has been offered. The hardest thing, I tell my old friend who is visiting, from my reclining chair, is to get into some kind of sitting position where I can enter text onto my laptop. Funny how everyone thinks they have a solution to it.

Stop.

Oh yeah. There’s ways to do it. Nelson has a friend in publishing. And, oh yeah, there’s dictation programs.

Stop.

Do you know anyone who actually uses the dictation program? No. But we’ve solved your problem. There’s ways to do it. I just wanted you to know that if there is anything I can do I want to help.

Well, there’s a list. But that’s carpentry work. I’m still in the recliner. There is a subtler form of energy vampirism – mostly they are calling for help from their own insecurities and fears. They take advantage of the suffering – I want you to call me every time you are going in for a medical procedure — like that’s an inconsequential request.

I want to help. Can you take steno for Christ’s sake?

     TIMOR MORTIS CONTURBAT ME.

Wendy came by. The Jepsen Herbarium at UC Berkeley does indeed want to acquire the Kuksu Herbarium. Say some 800-1000 specimens.

Wendy: “Anyone who reads your field notes is going to become a better botanist.”

**
21 October

Canceled the “ many friends and wives Berkeley and Marin and San Francisco gathering” Got a glimpse of the seduction of the “Men’s Group” as in “Members Only.”

But Laura was much more deeply invested in the gathering. She feels betrayed and let down. “I looked on them as my real family, my support group, all I see is NOT. We asked them to give up the Men’s Group for one night, and they couldn’t do it.”

What I heard: they would not expand the group, even temporarily. Even for one night.

How can you even call that medicine?

October 22nd

12:45 started work in the Herb Kitchen.

**

Can we survive this?

No.

One of us can.

And perhaps our love and trust.

Laura: I love you.
Dale: That’s a good start.
L: I’m afraid I’m going to lose you.
D: That’s another good start.
L: There are times it would be easier to lose myself.
D: And I can feel that.

This is by its nature unmanageable, out of control.
Almost a definition of cancer.

Let’s put those bits of herbs and veggies in the pot. The deep fear. The hopeless fear. The dreadful fear. Put it in the pot.

23 October
Hard evening yesterday.
The best we could do was hold each other while we cried.

25 October
Spilt the OJ. Wow. That helped a lot. (Not.)

No major damage just lots of sticky clean up. And I don’t bend.
Then Laura cut her thumb chopping fruit.
Hello.
Hello.
That was more challenging.
Used to be “emergency!” was just my thing. Not now.

Read the California Assisted Suicide Report. There will be a meeting in town. I guess we should go.

Slept on the wedge, well. Afternoon pain may be 4. Used wedge to read. Then got tired, pulled the wedge to horizontal. Slept some. Somehow didn’t hurt myself.

October 26th

Slept a lot with some comfort on the wedge. But Autumn sun punched through. Love punched through. Useless as man or beast. All I’ve thought about for these last 2 weeks of pain, never quite controlled, is how to put an end to it. This graceful overlap of morphine, sleep, Sun. Autumn enough to prove that. Yes. Okay. It’s worth it.
Again.

Worth a short cry.
Worth a confession of love for my partner.
“I’m NOT DOING MY PART>”

But yes.
If you still have the energy to do the extra work — I can still enjoy another nap with my feet in the sun.

5pm downstairs in the chair nodding
Laura home.
Pain 4.

*

Friday October 27th

Bad dream.
Three times with my head jammed sideways against a rock in a crevice of rock of a lot of rock.
In one my truck bumper resting over my head
That is, trying to give direction: between a rock and a hard place.

Back from skin clinic.
Dear Dr R was okay with me lying down on the examining table.

She froze off several arm spots and took a biopsy for my right chest. The ugly looking spot. And the new question: is it worth taking them out or “at this point” just watching.

Painful trip
Homeward was better.

Three dives, one up, two down.

Saturday October 28

3pm on the porch
A perfect fall day. There is a chair that is comfortable to sit in. A little reading. Rare these days.

To Do:
Finish Ebaugh edit.
Poetic thoughts for Gwyllm.
Checks for Marici.

Does it seem that the pain has lessened a notch?
Some hope that way.

*

29 October
9:30 only small pain, bm, back pain is lower right.
Laura transcribed as I read the Sept journal.
Most of the days spent blissfully sleeping or nodding. So there!

Nodding but there is only the background MS Contin on board.
Then in the evening lower back pain came back.
Couldn’t eat much.
Took 2 extra droppers.
So discouraging.
I was just thinking today that with days like this one, this pain free, I’ll fight to stay alive.
But the cancer is still alive
And that’s what I think I felt this evening.
But remember
A month ago I was taking twice as much morphine as I have been recently and pain 5-7
Today okay 3-6, 3-5.

30 October Monday
About noon: pain fairly mild 3-4 lower back first on right side shower helped hot water right on the spot I’ve been very active packing. May pull back onto nap soon.
With the back brace, drove 1st ½ to SF
What happened? Why do I feel {relatively} pain free?
Sat up the rest of the trip. Well, side-wise.
Ate a whole Jr Burger.
All firsts for the last 2 months.
Then in the go figure department the considerably ugly skin growth on my right breast came back benign.
How many months since that has last happened?

And a low load of narcotics. Three extra droppers until 8pm
At Stanyan Park in the suite
Driving both Laura and I wondering
Maybe something changed
Maybe ….
Maybe miracle

Radiation tomorrow

Tuesday 31 October
First day of radiation
Easy enough in the body cast
Shorter
The Stereotactic burst evidently over a small area
They’ll go from T 10 down to L 2
Hope it helps
And doesn’t make it worse.

Back pain is still moderate
But now at 5pm some faint nausea, big time fatigue
Still losing weight.
Was dreaming a poem for Laura.
Love you.

I must have taken a heavy dose of radiation
I didn’t expect the nausea or the vomiting
Which hurt all the way around the belt of muscle and bone
And whatever else is there at the bottom of my spine.
Worse than bearing down
Maybe because this treatment goes through the intestines
That was a 9

Darlin?
Yes.
Let’s go watch the World Series.