Bad Box

I am a fairly trusting sort of person, not a fault finder, not inclined to be suspicious of the system. I take the Platonic view that the work of one person is ultimately for the good of another.

And yet, try as I might, I cannot get past the feeling that there is something wrong in the notion that one could get “a bad box” of Avonex. This was the explanation for my recent illness as conveyed over the phone by a healthcare worker at the MS Center here in my town.

Now I’ve heard of a bad crate of tuna, a tainted can of peaches, an out of age pack of double A batteries—but a bad batch of interferon?

A bad box? I mean, isn’t this a pretty serious sort of thing, a pretty potent sort of thing even in a good box? What might a bad box mean down the road? How bad might a bad box be? Maybe a really bad box will take the unlucky user beyond the flu like symptoms. How about a seizure? How about organ damage? How about foaming at the mouth and then going brain dead?

Sometimes a box gets mishandled the woman said. Sometimes you get one that is old, or just hasn’t been prepared properly.

Really? Can it be? Sometimes dynamite gets mishandled too. You get a bad stick of dynamite. It goes off prematurely and your arm goes with it.

It happens. Is that what she’s saying? It happens?

What is the solution? I am to return the bad box and get a new one.

Sort of like a returning a jar of peanuts to the Fred Meyer store after discovering it had already been opened. Yeah, like that. Like a jar of peanuts.

Excuse me?

Can you imagine how freaked out I am now about receiving my next bad box of Avonex?

I remember how my brother’s oncologist, some twenty-five years ago, pronounced him cured of his cancer. And then two weeks later he died.

Perhaps he got a bad IV bag of chemo.

I don’t know, folks. From the very beginning I have gone back and forth on the MS drug question. To shoot up or not to shoot up? What are the proper weights and measures? What is the true ratio between disease suppression and quality of life?

I am struggling yet, adding up the columns—but let me tell you, a big minus just went to the interferon side.

Comfort Care Only

OMG, I was so sick on the Avonex last night. Just like the first injection, 1-1/2 years ago. This has happened for the past three weeks now. Sick after I take the shot, feel like road kill all the next day. Why I am suddenly reacting so severely to the Avonex? Who knows?

In any case, I put in a call to my neurologist this morning. Unfortunately he will not be back in the office until Monday. As it stands right now, though, I am thinking that I am not going to take another shot. Maybe change to Copaxone. Or nothing. This is like two damn days out of every week, and in my mind it is adding up to an unacceptable compromise in quality of life.

My wife asked me (again) if I was going to die. Well, not from MS, but maybe from the Goddamn Avonex, yeah.

Let me tell you, I was shaking so bad that it was getting to be more like a seizure than a flu-like symptom. I tried to light up a cigarette, but my arm was so wild that I was just as likely to stick the thing in my eye as between my lips.

Teeth chattering, shaking almost uncontrollably, I climbed into the bathtub. A good hot bath always calms down the shakes. But guess what? The hot water runs out.

So I am sitting there in about 2 inches of water, still shaking. My head feels like it's going to explode. My neck feels practically paralyzed. I crawl over the edge of the tub like some sort of worm, dry myself off (what little water I got on me anyway), and head for the bedroom.

This is when Coco, the Chihuahua, comes to the rescue. He's a little dog, but he is incredibly warm. Coco gets under the covers with me and snuggles himself into my chest. Then Smokey, the Labrador, comes in. He lies down on the other side.

Thank God for dogs.

Today I just feel kind of wasted and worn down, still a bit feverish, with a bit of a headache. The thing is, I'm going to have to work until 11 tonight, and I know I'm going to be tired as hell. Time to take a Provigil or two.