Nowsthetime

Out of the Woods, Into the Mountains

2010-11-01T17:57:00.000-07:00

HUGHIE'S LOOKING GOOD

We went up to Millard Canyon and hopped around on the rocks. Then we went to Roscoe's and had chicken and waffles. Hugh's tastebuds aren't all the way back, but he liked the waffles, just fine, and look how gorgeous he is once again.

And the next day I went to D.C. to the Rally to Restore Sanity and/or Fear. More abut that later.

Scan is CLEAR

2010-06-16T11:31:00.000-07:00

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.

Better and Better

2010-06-10T11:33:00.000-07:00

Hugh's birthday yesterday!!!

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!

2010-03-26T21:06:00.000-07:00

(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.

Apologies

2010-02-23T13:36:00.000-08:00

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

2010-02-21T20:36:00.000-08:00

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!

2010-02-12T18:07:00.000-08:00

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

2010-02-01T18:01:00.000-08:00

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.)

some snapshots

2010-01-27T20:39:00.000-08:00

So far so good. We LOVE Kaiser.

First chemo of three

A glamorous social worker. Get in touch if you have any problems.

And the glamorous Doc Buchshacher.

Grace administers the chemo.

Then a nice chat with the pharmacist who explained absolutely everything (lost the pic).

And then back to radiation

Help me! I'm the real Louis the Fourteenth... See the previous entry

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

2010-01-26T17:13:00.000-08:00

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."

Appointments, Raisins

2010-01-22T14:31:00.000-08:00

Today in the continuously pouring rain, we went to Kaiser Hemotology/Oncology for Hugh's pre-chemo info session. Laurie Pepper, Hugh Kenny, cancer

We'd been there Monday only to be told the appt had been cancelled.
We hadn't been notified.

The receptionist, a large black woman contemplated our (my) piss-off-edness. Hugh was annoyed but didn't want to make a fuss: He usually doesn't; I generally do. (I'm the "drunkard's dream" described in "Up on Cripple Creek" by The Band, "I don't have to speak, she defends me.")

Hugh in examining room looking wary.

Anyway, I've got to get that kind lady's name, because she said, "Wait a minute. I've got a doctor who owes me a favor." (After we got home, Hugh said, "No wonder she was so nice to me. Look what I'm wearing." He spread out his arms. He was wearing his black t-shirt featuring a huge portrait of Mohammed Ali).

Anyway, she was gone a long time, and when she came back she had Dr. B. in tow. He wasn't wearing a white coat (amazing!) and he was really adorable. He said he'd see Hugh on Friday. Today. And he did. He told us to ignore all notifications from Kaiser, since they're often inaccurate and not up-to-date.

Doc B. (doesn't usually wear a white coat)

He explained all the procedures and showed us the chemo room. I saw one patient in there who looked like a corpse and others who looked very healthy and bored. Hugh asked if he could bring his ipod. Radiation begins next Tues. Chemo (only 3 sessions at 3 week intervals) next Weds.

We went to the pharmacy to pick up nausea medication. We had to wait. I said to Hugh, "We're spending a lot of time at Kaiser." He said, "It beats salsa dancing," referring to our several expensive years of lessons and dance clubs. He said, "The place is less noxious, and the people are nicer."

When we got home we found two packages on the doorstep soaking wet. One was the refill of the herbs (six (dry) plastic bags full), and one was my new oilcloth apron! I went right upstairs to make Hugh's tea.

(Tea brewing costume. Still in my jacket and rainboots with new apron)

I've been pelting Hugh with books on meditation, etc. I sent him the link to Sound's True's audio of Jon Kabat-Zinn's "Mindfulness for Beginners." Last night, Hugh said, he couldn't sleep, so he listened to the audio, and decided to do the first meditation, the "raisin meditation."

You're supposed to get one raisin, look at it, touch it, smell it, etc, put it in your mouth, roll it around, taste it, etc etc. It's a good exercise, I did it when I went to a workshop he (Zinn) gave many years ago. It's supposed to get you into a state of awareness.

I asked Hugh how the meditation went.
He said, "Well, after I while I thought I'd better get up and get a raisin."

Hugh, this week

2010-01-12T17:36:00.000-08:00

No, this is Lizzie, Hugh's ferret.
She's groggy, because we woke her up to take her picture.
No. This is Louis, Hugh's Bunny.

And this is one of Hugh's plants.
He has cancer AND glaucoma, so just give him a break.

On Jan. 8th we went to UCLA, to the dentistry dept. to get a flouride tray for Hugh's teeth, to protect them from the radiation.

After UCLA we went to the Cinerama Dome and saw Avatar. Gorgeous.

Then, on the 11th we drove to Santa Barbara and met with Dr. Han, the herbalist recommended by Emily and Randy. We liked him. Very down to earth, knowledgeable, & practical. He checked Hugh's pulses and asked some questions and put together a collection of herbs to make tea out of. He told us that they would help the radiation & chemo to do their jobs. He said that in China, herbs are usually used along with chemo and radiation.
These are the herbs (plus ginger)
then we drove home. It was a gorgeous evening.

Later Hugh and I had a fight about something (I forget what). He asked, "Do you want to break up?" I said, "Well, this would certainly be the perfect time to do it."

Hugh is doing well. He's funny and philosophical and sweet and cuddly. And beautiful. I was so happy to hear that the chemo won't mess with the moustache.

We've both been very lucky and we know it. I'm doing good, too. After living with my mom's alzheimers and so on, I realize that nothing you can do will make life easy and unsurprising.

Apropos, here are some words about the future from Emerson:
From "The Oversoul."
... But we must pick no locks. We must check this low curiosity. ...Do not require a description of the countries towards which you sail. The description does not describe them to you, and tomorrow you arrive there and know them by inhabiting them. No answer in words can reply to a question of things. For the soul is true to itself, and the man in whom it is shed abroad cannot wander from the present, which is infinite, to a future which would be finite.  ... By this veil which curtains events it instructs the children of men to live in today. The only mode of obtaining an answer to these questions of the senses is to forego all low curiosity, and, accepting the tide of being which floats us into the secret of nature, work and live, work and live, and all unawares the advancing soul has built and forged for itself a new condition, and the question and the answer are one.

---Ralph Waldo Emerson

And now...

2009-12-29T16:20:00.000-08:00

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.

Background

2009-12-29T14:51:00.000-08:00

This is about Hugh, and I think that's mainly what this blog will be about from now on.

This particular post needs to be read from top to bottom, since I'm importing email text from my mail program, so that the whole story is right here, so Hugh's friends can read it.

The story starts in Nov. 2009

November 25th*

figure the best way to share this info is just to share it and get it over with. Hugh had a lump on his neck which has finally been diagnosed as a metastasized squamous cell carcinoma.

As far as I'm concerned, it's just one day at a time, now, and that's always been Hugh's M.O., although of course he was devastated initially.
He's busy with projects around the house and his pets, Lizzie Eustace (the ferret), Louis (the Love Bunny), Bobby, Marie, Spike, et al (canaries).

I'm more than ever realizing how deeply I love him. And I'm in total denial, which is the best place for me right now.
He's having a minor surgery next week to try to discover where the cancer originates.
I'll keep you up to date. I love you all.

12/5

Hugh's Doc called me the moment he got out of surgery (it was hours and hours and I had to run home and pay the guy who's repairing our driveway)
and said:
"Well, we have to wait for the pathologist's report, but all I found was a very small cancer on one tonsil. I removed both tonsils and took biopsy samples from the larynx." Turned out there was no cancer on the tonsils.

I had already asked the doctor about the involvement of the lymph node. (He's young, his name is Levy, and he wears Danskos, and he's so gentle and sweet, wears no wedding ring; I think he's gay.) Anyway, I said that I thought that when the lymph node got involved, the cancer would spread to other parts of the body. He said not in this case. I still don't understand what he told me about how some cancers spread through the blood stream and some thru the lymph, but he did say that this kind of cancer doesn't spread that way.

Hugh was nauseous and miserable all night after the surgery (because he'd swallowed so much blood during the surgery and/or because they gave him three different kinds of knock-out drugs.) Today (12/5) he got up and cleaned the animals cages and fed them and took his antibiotics, etc. He's a little woozy because he did manage to finagle some serious pain medication, but he's basically, so far, on the mend.

We're waiting for the pathology report and the results of the PET scan.
And then, and then the consultation with the "tumor board."

12/7
Today we saw the doctor.
The PET scan showed no cancer anywhere besides the lymph node, not even on the inflamed tonsil which was removed.
The pathologist found no cancer anywhere except in the lymph node. And the surgeon said, "I really went to town on you, took biopsies from everywhere. And... nothing."
So it is a stage 3 cancer (because of node involvement) with "an unknown primary."
Meaning that the origin is so small they can't see it or that it's gotten better or...

The lymph node, however is a problem. Because eventually, it CAN spread from there.
Doc Dansko thinks that the tumor board will suggest daily radiation and chemo for a six week period.
After that, the doc says, there's a very good chance of complete recovery. It all depends on what the lymph node does.
He said that their head-and-neck cancer guy is really good. His name is McNichols.
Hugh, whose hearing isn't great, asked, "McChrystal?"
The doc and I, laughing, said, no no!
Hugh said, "Whew. I was scared."
love and kisses, L.

12/7
I've been reading more stuff on cancer forum sites that have discussion boards for every kind of cancer known to man.
People support each other and post problems and experiences.
So, my readings indicate that Hugh's (so-far) happy report doesn't protect him from the radiation and chemo to come.
Also, according to the people writing on those boards, the cancer CAN return and spread to other parts of the body.
Many people can no longer salivate after treatment and taste buds go away, returning only years later.
Most of their reports are doggedly upbeat, sometimes inspiringly serene. But I'm not telling any of this to Hugh. I tell him, "don't do any research, the pictures will scare the shit out of you."

I have to take a break from that reading. It depresses me. Now is GOOD. I like NOW. And I plan to keep on liking it.