Showing posts with label squamous cell carcinoma. Show all posts
Showing posts with label squamous cell carcinoma. Show all posts

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.

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."

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.