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.

Appointments, Raisins

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

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