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.)