Apologies

Hey, all.  Sorry you got an email blast from a member of my "friends of Hugh & me" mailing list.  The person who emailed you, an old friend, an M.D. with a big BIG heart, got carried away by the BIG picture.  In future, all email addresses will be hidden. 

Above It All

Mike on the roof

Mike fixed the gutters, trimmed back the tree, etc. etc.

John's Chair

Lizzie Loves Mary

I shot this of Mary 40 years ago!

Me and my new best friend at Kaiser. Note the sign: "high profile vehicles only"

The boys (and one girl) have been here and gone. It was hectic but wonderful

First re Hugh: He asked the RO (radiation oncologist) for methadone.

Well, he kinda demanded it. So marijuana IS a gateway drug just like Mirandi said!

Seriously, he's a typical head and neck radiation victim:
Hurts to swallow ANYTHING.
Zero saliva.
No sense of taste.
He'd lost 17 pounds, and he's never been fat, and he didn't want to get a feeding tube. I put peaches and cream in the blender. Didn't work. (Also put spinach and mashed potatoes and sour cream in the blender after Hugh couldn't manage it whole: It's one of the things Hugh loved, that his mom used to make, though NOT with a blender). He couldn't eat any of it. But now, with the drug, he's managing 7 Ensures a day and drinking almost enough water. Fiji Water actually tastes okay to him. None of the others do. He's gaining weight. And he's able to drink Dr. Han's tea again, which I hope will help with all the awful after-effects of treatment I've been reading about.

A side effect of the drug is that I do all the driving now, and because the driveway was filled with tools while Hugh and Mike repaired the roof, I've been driving Hugh's van, which was accessible -- parked, as it was, on the street.

This Chevy Astro van is just HUGE, the tallest thing on the street, and I LOVE it. There's no rear view, because it's a closed van, filled with tools, but Hugh's got a tv screen in the rearview mirror which shows you a wide-angle view of what's behind you (when you're in reverse), day or night, and it beeps in a pattern to tell you how close you're getting to anything. The side mirrors are bigger than my head. The windshield, and the driver and passenger windows are gigantic. I drove way out to pick up asphalt roofing shingles one morning, with the windows rolled down, and it was heavenly: I was like a tourist in L.A. There's so much to see from up there! Crenshaw!

I realize something about my personality with this vehicle: Being short, small, and female, how I act is based a lot on a perception that everything will be gone by the time I get there (if you know what I mean). So I'm pushy and impatient & tend to force my way through crowds. Now, noblesse oblige, man. I'm the most gracious driver on the road. I look down benignly on all the little people and wish them well. I wave other drivers past me a lot.

As for the roof: Mike (the genius carpenter) had a stroke a while back and is blind in one eye, and he's kinda creaky. Hugh's creaky, likewise, and his vision isn't great and neither is his hearing. And he says Mike is a "low talker" (see "Seinfeld"). But with Mike on the roof and Hugh on the ground or on the ladder, they did a spectacular job and even put a skylight in the foyer.  Hugh and Mike made a couple of window frames for John to take back to Petaluma.  John produced and directed the whole production.  (Sheri, John's wife and an old friend, sent slippers and a soft blue blankie which Hugh wraps himself in when he sleeps and naps, and she called daily.  I think I've said that Sheri is a hospice nurse. She advised Hugh about nausea.  She was the one who told Hugh to how to ask for the Methadone).

Then, one night, Mary Manley (whom we all know from the olden days at Synanon) came over. Her father was the house dentist back then; he brought his kids in. Mary bonded with Lizzie the ferret. I've never seen Lizzie so impressed by anyone. And we gossiped about times and people long past. And it was incredibly sweet.

Only a few more weeks of treatment left. I've just started working on the next release from my label, a concert in Stuttgart (sample). The music is just beautiful. It makes me happy all day long. I've organized the tracks. Now I've gotta write the liner note and find some good photos.

The CAVALRY arrives!

Things are pretty good right now.  Hugh's friends, John Stallone and Mike Jorgensen are here. (see below for pictures)  John & Hugh knew each other when they were in their early teens, both in gangs in Brooklyn. Hugh's gang was the "Halsey Bops." John still sometimes calls Hugh by his nickname from that time, "Whitey." I once asked Hugh why he was called Whitey. He said, "I guess because that's what I wrote on my jacket." Hugh and John and Mike all wound up in Synanon together.

The cavalry arrived Tuesday.  Mike is a master carpenter (we went to Kauai for Habitat for Humanity with him and his wife-at-that-time).  He's also a bighearted sweetheart of a guy (I've NEVER heard him say anything mean about anyone), and he and Hugh are working on fixing the front porch roof and the front foyer roof.  Both roofs were rotted and leaking, and Hugh had torn them up and had not been inspired to continue (rain, expense, exhaustion).  They are working their asses off and Hugh is smiling.  John and Mike are minding the house, cooking and cleaning down there in Hugh's domain & cleaning up the millions of dishes for the canaries (who live so WELL).

After a good period (Hugh smoking dope every morning and actually having an appetite and eating), he's now having increasingly bad side effects from the radiation, and he's having a worse and worse time eating and drinking. Sheri gave us a lot of advice and encouragement about food, weight loss percentages, the feeding tube. Hugh's daughter gave us good advice about what might be edible or drinkable. Hugh is thinking he doesn't want to even TRY to eat any more it's such a drag. 

The two wise men (wise guys) have been taking Hugh to his radiation treatments, so I was able to go out to Santa Monica, spend too much money on clothes (great clothes!) and walk for almost five hours on the boardwalk.  Five hours. And it was a beautiful day.

I shoulda brought my bike.  I've only fallen twice, and the bike is so close to the ground I haven't been hurt.  A scabby knee is all.  The first fall was because I wasn't sure of how to stop.  I'm getting better at that.  The second fall was a result of the front tire going into a narrow rut which grabbed it and so I toppled.  My equilibrium needs work.  And my self-confidence isn't great.  Back to my Wii?

If Hugh feels well enough, we'll walk to Gelson's tonight and buy some appealing food. After that he wants to show me a movie he loved, "Idiocracy."

Hugh said he must have done something right to have such good friends in his life. I remember when Louie Delgado was dying in Tucson of liver disease. He was bedbound in a sanitarium and out of his head most of the time. Hugh went to Tucson, slept in his truck, and he looked after Louie for several weeks. What goes around comes around as we used to say.


Mike & Hugh

John
Mike on the roof

Venice boardwalk

OY

The cancer honeymoon is over.

Dr. Cosmotos

Radiation Oncology Waiting Room & Computer & Kids Alcove

Los Burritos

the helmet glows in the dark

Hugh & Louis

What I fear most is Hugh quitting treatment because of the complete loss of appetite and the difficulty he's having (already!) with swallowing. He's supposed to be drinking water continuously. He can't manage more than a couple of cups a day. He was also nauseous, but he's managed to make that go away with marijuana. It also gives him energy (!) which is strange to me. It just makes me terrifically sleepy.

So, what's probably coming is a feeding tube, and I don't know whether he'll tolerate that or not. But what's the alternative?

CONSISTENCY

Meanwhile, we had a fight (mild) the other day. I wanted him to change the time of just one of his radiation appts, and since I make and keep track of all appointments, I thought it would be easy. The appointment desk told me to talk to the technician. Hugh told me NOT to talk to the technician. He said he didn't want me bothering the technician.

This is one of our usual issues. For Hugh, everyone else, strangers, always come first. Especially first before me. My attitude has always been that those who are closest ought to come first. So what he said was familiar and, to me, WRONG and made me mad. I said, "These are OUR appointments. We're in this together."
"No," he said.
I repeated it a little later, still working on him. "We're in this together."
He said, "You already tried that one."
Then he said, "Sick people need consistency."
That was a much better argument, and I conceded and dropped the subject.

FLIGHT

The reason I wanted to change the time of that appointment:
Since I quit using drugs and drinking, I salve my wounds by spending money. Buying new stuff. I wanted to buy a bicycle. I'd been researching and reading online for a long time, and I wanted to drive out to Santa Monica to possibly buy one I'd looked at a couple of weeks ago.
I'd been imagining what it would be like to just FLY. Away. Into the wind.
The radiation appts are smack in the middle of the day. And I had a commitment on the weekend to show some NC members how to use the existing website (it's a long story.)

Hugh woke up the next day feeling better, so I did manage to find a wonderful little bike out in Highland Park. I got my shiny object, and rode it, and of course immediately fell down and scraped my knee, because riding a bicycle isn't just like riding a bicycle. You DO forget how. But I got that feeling I'd imagined. The gliding. The wind in my face. And it was even better than I remembered.

DOCTOR SALAMANDER

Hugh was miserable this morning, so I called Kaiser and told anybody who would listen about Hugh's problems. I'm trying to get an appointment for him with Doc Dansko (Dr. Levy) who is such a doll. Hugh wants somebody to tell him that the obstruction he feels in his throat is just a minor swelling. Levy is going away tomorrow for a week, and I'm still hoping he calls. I called Dr. Cutie (Buchshacher), and his office said that if the problem is with swallowing it's a radiation problem. They said get a Doc in Radiation Oncology.

So today, after the radiation treatment, Hugh saw Doctor H.A. Cosmotos and we had our first unpleasant experience in the process so far.

Hugh said later, "That little shit has the bedside manner of a salamander."

That kind of sums it up.
Hugh explained the problem. The guy sat there with what he must have thought of as his "listening" face.
He said that it was too soon for Hugh to be reacting to the radiation.
He made the statement. And sat there.

It was as if he was saying, "I'm committed to sitting here for a long as you like and pacifying you with my presence, because that's what I'm supposed to do.  And, by the way, it's soooo boring."

(When we arrived this spoiled schmuck was bouncing a ball against the wall at the nurse's station -- has he even looked at the faces of the people in the waiting room?)

I asked him to look at Hugh's throat. He did, said it was fine.
Hugh asked him for marinol (pharmaceutical marijuana). For appetite. He shook his head. He said, "It doesn't work." He said the drug Hugh had been given for nausea was MUCH better.
Hugh said, "Well, your shit doesn't work. Marijuana does. " (for him it absolutely does). "But," Hugh went on, "probably Marinol is just not that profitable, so why bother with it. Right? Have you ever been nauseous? It kind of kills your appetite."

Snotty bastard sat there looking bored, and offered what he must have thought of as a smile.
I asked, "Hugh's lost about 10 pounds. How much weight loss is too much? How much before he has to have a feeding tube?"
"Eight or ten pounds more."
Hugh asked, "How does a feeding tube work?"
He was vague, so we questioned closer.
He was less vague.
I asked, "What's the rate of infection with those?"
"Very low."

We left.
It was nice to see Hugh finally getting angry.

FOOD & WATER

I reminded Hugh that another patient said the only food he could tolerate was macaroni and cheese. He said, Okay, let's get some.
We went to Gelson's (because its easy) and bought Stouffer's. He also looked at flavored waters, thinking those might be easier to take (water tastes BAD to him).
When I started grabbing bottles, Hugh said, "Wait! If I like it, I want it to be something I can afford."
I told him that when you have cancer, an extra few pennies for water is excusable.
When we got home he tasted it. He liked the pricey water.

We decided that Evil Sugar might be one way to keep the weight up and avoid the feeding tube. (Hugh says he's too klutzy for a feeding tube. He'd be catching it on stuff. I said that Lizzie, the ferret, who loves chewing on cords and cables, would probably chew it right up.) We bought ice cream and fruity yoghurt. And Eggo pancakes.

I'll let you know.

(P.S. some good things: Hugh saw a wonderful movie on tv and sent to netflix for it and we watched it together: "Passing Strange." Spectacular! I saw "Waltz with Bashir" which was astounding animation, inspiring, beautiful. So inspiring that I went to work on my movie. What I'm doing is tedious but rewarding, and that odd thing happened, which happens sometime when you've been away from a project: The work went well and was easy and not frustrating as it so often is. Then I heard a New Yorker interview with Ian McEwan (Saturday is such a terrific book & Atonement has one chapter that overwhelms me (the brain wound, etc. & Briony submitting her manuscript). That interview, with his quoting of the last pages of "The Dead," (Joyce), was likewise inspiring and I worked on my memoir for a couple of hours. And last but not at all least, Mary M. let me know that she was available to drive Hugh to Kaiser when I need a break.)