Thursday, April 14, 2011

It's Alive! (beta)

I have been hanging on by the tips of my fingers. I don’t quite know how I got here, but I did. I have one insidious disease, and at no time has any doctor ever told us what to expect post-hospital. They’re just thrilled they can shove me out of there alive. (Day’s over. Let’s have a drink.)

Yes, I survived Hodgkin’s Disease like a trooper. A cancer with an unheard of ninety-eight percent survival rate. While technically I’m alive (I think, to join that two percent for real, I’d have to have truly dropped dead as opposed to faking it which I’ve been doing for the past four years. Yeah, yeah, yeah, I know. Dead people can’t count. Because they’re dead.) I believe I fell into the bin of two percent of patients instead of sailing through this mere trifle of a lymphoma.

I often forget I had cancer.

After four years I can tell you it could be worse, and it is, “my breath of sunshine” ENT becomes less and less cheery each time he sees me. He did give me a back-ended compliment yesterday though. He told me he had expected me to look much, much worse than I had when he first saw me many light years ago. Given how miserable last week’s CAT Scan is, I should look like a piece of shit.

To that, I’ll say to him and any others with similar expectations,” Au contraire.”

He took back his promise of permanent stents. These were to solve the hearing problem I’ve been suffering for months now. Instead, he put in another set of impermanent stents back in my ears knowing that they will fail, but may improve my hearing as we choose A HEARING AID. I have no more than the usual amount of hearing loss. Permanent stents require surgery. Surgery, infection. Infection, GAME OVER. Thanks for playing. Please follow lights at end of the theater where our ushers will tell which way you exit the building. (“For You, you take the BQE over the Kosciuszko Bridge…”)

So I ‘m also a member of the small group of people with complications that doctors’ usually find are a snap to fix. (I have four practitioners who come to my home to treat me in various and sundry ways. It doesn’t do anyone any good if I can’t hear them. It’s like there’s a scrim between me and the rest of the world.)

But that’s nothing. There’s The Skype of yesterday evening. Just me, Chip, and my psychopharmocologist. Nice and cozy.

Background: My drug-combo isn’t good. Not at all. I’m either tired or frightened. The sleepiness has to be my clever means of escape. Who needs therapists when I know myself so very well? Me, you toadstool.

I wanted to be crystal-clear to my psychopharmacologist about what was going on with me

Look, I’ve been doing this for four years. And it’s about all I can take. Nothing is pleasant. Nothing is fun. I feel sick every day. I’m petrified to exercise, because it makes my choke and gasp for air. I think I’ve had more than enough. And for me, death is my most appealing course. I want to die.

Was I clear enough?

He was really quite the gentleman and gave me props for four years of hell. He said he still wants to find a way to allow me to have some joy in my life. Lovely man. I was impressed. (I guess after all those years doing exactly this, he better be damned good. Otherwise, his office would be surrounded by piles of dead New Yorkers. Not a good look.)

My talk therapist who is one smart cookie. She said, “What you need are girlfriends.” (They could be boys too.) Yeah, like I used to have when I was I kid. When we shared everything and all. Okay, I don’t have that kind of staying power anymore. We’ll start with fifteen-minute visits and go from there. Whaddya think?

(Better than a visit to the theater.)

Tuesday, April 5, 2011

The Foot Stamp

I wrote this post about a week ago.

Fear. I am paralyzed by it. I think I’m going mad. I don’t want to see anyone. I don’t want to speak to anyone. I want to be Bubble Girl who has access only with mother, brother(s?), and my honey. A Seinfeld episode included Bubble Boy. Bubble Boy was an asshole. A real a shitheel. I‘m working on my asshole and shitheel parts. I want to be just like Bubble Boy, I have what to be an asshole and a shitheel about. I don’t do very well with those parts. But I’m a whiz at paralysis, shame, fear and loathing,

When my P.T., the best P.T. in the whole entire world, watches me as I cough and cough and gasp for five minutes or so. (This was a good day. You should hear me cough between every single, fucking rep on a bad day.) I said to her, at least you’ve seen this. You get it.

But she hadn’t. She had never seen a good Fran “Time out, all! Just give me whatever the hell time it takes to get my breath back, could you please?” I know I do my damndest not to cough excessively if I can manage to do it. It’s like stuffing the snakes that pop out of the can back in. There’s probably some exercise value to making that work over and over again.

I know she knew how rotten I feel, but I think she saw for the first time the depths of my rotteness and can’t be far from home.

Because when I go into my daily gasping, people who don’t know, don’t get it, become frightened. “Are you okay? Do you need more oxygen?” And they always look more panicked than I. I had to explain how the remainder of alveoli work to my oncologist/internist, ENT. I received totally incorrect information from my original pulmonologist. There are very few people with such severe case of ARDS who survive. Lucky me. I should get a ribbon or maybe even a medal for this.

Because I have so many fewer working alveoli, I can’t get oxygen in my blood fast enough. You can bathe me in oxygen if you like. It doesn’t make a whit of difference. I can only metabolize what my ruined lungs can metabolize. Period. (So the crazy thing is that I have slight pulmonary high blood pressure.)

Regarding nothing yet not. I just listened to Robyn Hitchcock sing, “Because he wouldn’t make love to a loaf of bread unless of course it were in his bed.” My thoughts exactly.

My eyes are always wet. I’m not experiencing an allergy. I still have a toe touching the ground that allows me to tell the difference between sad and an allergy. You’d think I’d want company, wouldn’t you? I am impervious to most of what goes in the outside world. I wish I still cared about everybody else. Oh no, I wish you all happiness and good things. They just won’t ever happen to me. That’s pretty hard to take.

I don’t see my ever accepting my situation. It’s hell on earth as it is and can only get worse.

Hey, I’ve lost ten pounds. I don’t have ten pounds to lose. But I don’t want to eat. My eighty-seven year old mother has taken to making things I’ve always loved. (The best damned chicken soup with homemade noodles. Kosher for Passover even.) Smart cookie, that one. And a damned fine cook to boot. Ma, I salute you. She sure as hell didn’t want to see her baby go through this. I think someone told me that she said way early on in this mess, “I wanted so much more for you.” This from a woman who lost her husband and mother within months of each other. (For real.)

Ma’s had it with this shit. I wish that were enough. When we were kids, and she got really pissed at us for whatever the hell we’d done, she would stamp her foot. It was loud. It was scary. And we, stupid kids that they were, jumped back utterly petrified. I like to think, if Ma stamps her foot, the whole of it, ARDS scars and the Bronchiectasis (gesundheit) would tear ass in fear. While the Foot Stamp was guaranteed to make us quake with fear, we never pushed the envelope. (What else could it do?) I never wanted to tempt failure to have Ma use the Foot Stamp to rid me of ARDS and Bronchiectasis (geundheit), and it not work. (But it would be so cool if it did!) But we all know the truth. If the Foot Stamp were so powerful, my Dad would still be with us. There’s my answer.

Ma assured us that the foot stamp had no power in my pathetic situation. (To this day, if she stamped her foot, Doug and I would turn in to jelly.) Are we not pathetic?

Actually, I didn’t have anything to lose except my poor beautiful quadriceps that I worked so hard to get. My skinny legs disgust me. I suppose if I took every waking minute every day forever and ever and ever, maybe I’ll get something back working with puny ankle weights. Frankly, I don’t think forever and ever is quite enough time. Too damned bad, Lipman.

To be continued…