He's Better!

(The Photos Are Below) 

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)

Smitha, conscientious, powerless

Success. Waiting for radiation after surgery

Meanwhile, the harvest:

P.S.  Anyone with cancer, check out the wonderful Cancer Compass forum for info from the people who've been there.

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

Wherever You Go There You Are (and there are a lot of other people there, too)

 Hugh about to crawl under the house

to look for the pliers he lost

the last time he crawled under the house

(he's so damned CUTE)

Today we went to Hugh's first (of about 30) daily radiation treatments at Kaiser Sunset.

We went down to the treatment waiting room which was a spacious atrium filled with nice little loveseats and chairs and plants. There was no tv playing(!). People were sitting around, waiting to be called or waiting for their darlings to be finished with the day's treatment.

We sat down near a couple, an emaciated man and his neat wife.
I ventured an opening question, and the man told me today's was his last treatment. Twenty-one years ago, he'd had the kind of cancer Hugh has (squamous cell carcinoma in the lymph node, origin unknown.) It was treated with radiation and "cured." Twenty-one years ago. According to his doctors, the tongue cancer he has now is not related to that one. I won't go into gory, scary details, but he was very matter-of-fact and sweet. Hugh chose not to listen too close. though he did pay attention when the guy told him about the mask he'll have to wear, and how it's bolted to a table so he can't move.

After the man went in for his final treatment, I had a long talk with the woman. They've been driving in every day (thru the sheets of rain we've been having) from Palos Verdes. She told me that one in 100 people in So. Cal has cancer. She also told me about a recent article about radiation in the New York Times. (I looked it up. Apparently overdosing with radiation is rampant.) Geeez. (Not that I totally trust the NYT after the lies they told about me & my attitude toward local water quality.) But I plan to make a pest of myself, querying the staff about checking and double-checking their computers, and so on. (I'm reading Atul Gawande's "The Checklist Manifesto.")

Hugh shook hands with the guy, when he came back, and they wished each other luck. Very sincerely.

He referred to them as a couple of angels.

Hugh was called and was gone a long time (for the initial setup.) It usually takes about 20 minutes.

I was sitting and reading my Kindle book on my iphone. I'm reading "Too Much Happiness," Alice Munro. The first story, "Dimensions," is so ambiguous and great. (Ambiguity pleases me more than untrustworthy certainty used to. I like to know where I (can't quite) stand.)

Then, I noticed my mood changing to outright cheeriness. There was an amazing, fresh scent in the air. I looked up as a black woman sat down near me. She said, "I like your boots." (see previous entry for photo of my rain boots).
I said, "I like your smell!"
She laughed. We then had a long talk about the scented shea butter she wears. She took my email and I took hers, while her ol' man came out from treatment. She sent my email to the shea butter guy who's from Africa and who makes his own blends.

Hugh came back and sat down as we finished. He was fine. Felt no different. Hadn't freaked out from the mask, though he had failed to say, as he'd planned to, after he donned it, "Please help me! I am Louis the Fourteenth. The other guy is an impostor!"

He said everyone was kind and helpful.

We came home. Hugh immediately went to work on the pump in the grow room. He wants to finish all the tough jobs before he starts to get worn down by the radiation.

John is supposedly coming up to stay a while again. I like having him here. He reportedly told Hugh, "Laurie can't be taking you there every single day."
I said, "What a sweetheart!"
Hugh said, "Yeah! I thought you knew that about him."

And now...

Isn't He Gorgeous?

Met with the the Kaiser Tumor Board on Christmas Eve.
A team of 7 or 8 radiology oncologists headed by a Dr. Lien looked down Hugh's throat, up his nose, thru his hair at his scalp.
Then they deliberated. They were meeting with a lot of patients and their families that day -- which was a very long one.
The verdict was what Doc Dansko predicted: 6 weeks of radiology, 3 chemo treatments. Without which things would get very ugly and painful. Doc Lien said that if the lymph node reacts well to the radiation and chemo, Hugh's chances of recovery are 80 or 90 percent. IF. But Hugh liked hearing that. If it doesn't, surgery and more C&R.


Hugh keeps vacillating and talking about possibly checking out, saying, about the upcoming pain and suffering, that he's such a sissy, he can't even stand the thought of it. I said that maybe this is one of his last life lessons (easy for ME to say), and I handed him Stephen Levine's "Who Dies." Which he likes. He's also been reading Marcus Aurelius who was basically a stoic. And he LOVES Marcus Aurelius. We did look at a video about alternative cancer treatments and I did read Suzanne Somers's book, but there is so much mumbo jumbo quackery mixed up with some intelligent discussions. AND none of the doctors ever mentions the kind of cancer Hugh has.

I spoke with my dear old friend M__ who had a cancer, the same kind Hugh has, in her mouth. She said she interviewed 19 doctors, so unwilling was she to go through radiation and chemo. All 19 doctors agreed, tho. So she did go thru with it. Possibly later than was best. She was clear, and then it came back. So surgery and more radiation. She's been fine for six months but does talk about the loss of salivary function, taste. She didn't have to have a feeding tube in her stomach, tho.

Hugh's daughter's husband has leukemia and many in his family have cancer. She says, when they sit down to the table together they all ask, "How's your cancer?" And nobody feels sorry for you unless it's REALLY bad. Hugh said that makes him feel that if he WERE to check out, it'd be really embarrassing. "They'd all sneer and say, 'What a punk.'"

John (Hugh's oldest friend in the world) came down from Petaluma to stay with Hugh for a while. He's using my old pro juicer (the one I used to cure Art's arthritis (no sugar! tho cocaine and methodone were allowed! accupuncture, coffee enemas and a carrot juice fast 3 weeks) to make Hugh healthy drinks, using Hemp protein and various things. It's wonderful having John here. Doc Lien said Hugh needed to bulk up since he'd soon be losing lots of weight. The doc said, "Just eat a lot of junk food. Have a good time." We both just smiled. John is making Hugh gain weight without junk food, and I'm trying to keep making him take walks. (Doc Lien said exercise was unimportant.)

On Christmas day I celebrated with Emily and Randy and Ryland and Jed and Mirandi and Alan and Evie. Hugh stayed home with John. Mirandi and Evie are my dear cousins, still, even tho they have become republicans, and we all grew up with Emily who's an absolute angel of sweetness and black humor and cooking and keeps such a cozy big ol house. She once acknowledged that her role model was my sainted Aunt Mae. And we've known Ryland and Jed since they were babies.

Emily and Randy told me about this herbalist (and acupuncturist) in Santa Barbara, Doc Han & I ordered and am reading his book which is very sensible and readable. So We made an appointment with him and hope he can help Hugh endure the R&C and not suffer too much. And get better.

Love & kisses, L.