HUGHIE'S LOOKING GOOD
Out of the Woods, Into the Mountains
Scan is CLEAR
The clear scan was a relief but the most relieving thing was actually the visit with the hands-on, eyes-on ENT. Then with the ditto radiation oncologists. The original scans were clear. The only cancer that was EVER found was found in the swollen lymph nodes which are now normal. The scan etc. would show metastases, if there'd been any, but there weren't. So we are happy, Hugh's gaining weight, gaining strength. I said to him, "I get to KEEP you!"
L.
L.
Better and Better
On June 14th we get the results of the scan.
The original ENT, Dr. Levy, checked Hugh out yesterday (deafness, eardrum problems from radiation, fixable). Saliva, taste buds, coming back, thank God! Sometimes they don't. Hugh is in good spirits eating, walking, joking, working (fixing things).
Jerry comes over and they BOTH fix things. John is here. Tim comes over and helps with cultivation (mites!). They all sit around and talk about fixing things. John watches the Lakers. It's a man's world down there. Fun to visit. I do tech support.
He's Better!
Sorry I haven't posted, but the computer was being repaired, no online access either, my car's registration has expired (n.a., but goes to my state of mind), and I'm trying to put out the next album asap.
But, yes, Hugh's much better.
Today he ate some chorizo con huevos! Which is pretty amazing (see below).
First, as a public service, I want to announce the efficacy of the 20 second hug.
Apparently a 20 second hug can change your body chemistry for the better.
At a certain point in this little epic, Hugh and I were quarreling (which we don't often do). I felt Hugh was being controlling and critical, and even though I knew that this was a result of how out of control his health seemed at the moment, I still hated it. So we fought.
Then I heard about the hug. I told Hugh that his criticisms made me feel unloved and unappreciated. I suggested a regimen of hugs. Folks, they work. We got all lovey dovey which is how I like us. We stopped fighting.
Meanwhile, John Stallone, aka San Giovanni della Petaluma, is in the house. He's been helping Hugh with his stomach tube feedings. The boys have been watching all 4 (5?) seasons of The Wire, while Hugh "eats."
All radiation and chemo are over.
Now Hugh is recovering from radiation and chemo.
The photos below are from before and after treatment.
Kaiser Drops the Ball
The side effects of radiation made it impossible for Hugh to swallow. So, after he'd been unable to eat for over a week, we requested a stomach tube for him (PEG). A usual thing with this kind of treatment.The trouble with having so many specialities involved in treatment is that nobody is overseeing ALL of it. Except the patient -- who doesn't know the protocol.
Our nurse practitioner in Radiation, Smitha, kept promising us an appointment to get the PEG, and every day she asked us, "Haven't they called you yet?" But they hadn't.
I emailed our GP AND the doctor assigned to Hugh in RO (Radiation Oncology) begging for a referral.
Our GP (Kaiser calls it "Family Practice") got to me back right away but couldn't do anything. I heard nothing from Hugh's RO, Radiation Oncologist.
By the way, if you're confused by all these acronyms, join the club.
Finally, the PEG people did call. It was March 4th and Hugh had lost about 45 pounds and was weak. They said they could give us an appointment to install the tube 12 days later. I got the call just as Hugh got out of his daily radiation treatment. I told them Hugh was starving. They said Hugh should go to Emergency to obtain the PEG operation. I blew up.
I ran to the nurses station and started complaining, demanding to see Hugh's doctor. A nurse put in a call to Smitha, who said she was busy. The nurse said I was screaming at her. My voice was louder than usual, and I was enunciating carefully, but I was not screaming. I understood, though, that the nurse was desperate to get somebody to attend to me, and that was just fine.
Hugh had followed me in. I was afraid that he was going to be, as he so often is, the peacemaker, but hooray. He felt threatened and involved.
We had an audience with Smitha, and Hugh disputed her contention that she couldn't do anything. She insisted that Hugh go to Emergency. I've been to Emergency, a few times with my (late) mother and a couple times myself. Even if you arrive in an ambulance, it's usually a five hour ordeal. And then, Hugh figured, the people who routinely put in the PEGs, who are the experts, would not be doing the job, but it would be handed off to any old surgeon. We declined. Finally Smitha asked, "Do you want me to call my supervisor?" Yes.
Her supervisor turned out to be a doctor we'd never seen before. Hugh started in on him, and I wish I could remember what he said, 'cause he was brilliant and witty and logical. Hugh, involved in his argument, didn't notice, but the doctor was actually amused by Hugh's skill. Hugh conquers the world by amusing it. (You have to imagine the guy in the "March" pictures, below, doing this relentless arguing)
We negotiated until the doctor agreed to call in to Emergency. We wouldn't have to wait. He'd be seen at once by one of the specialty surgeons.
We agreed, but then, as we were leaving, the doctor came out to tell us that Hugh was to check in to the hospital. Surgery would be performed by the proper people.
We found out that the PEG surgery gave inpatients priority. Hugh could only get it by becoming an inpatient.
It was done. Hugh started taking nourishment. And he is gaining weight. He's also, as I noted above, beginning to eat again. His sense of taste has returned (which doesn't always happen).
Now we wait.
January 2010 (before)
March 2010 (after)
P.S. Anyone with cancer, check out the wonderful Cancer Compass forum for info from the people who've been there.
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
