Nowsthetime: 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)