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

Background

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.