Fresh-From-The-Farm

It’s so peculiar. I’m miserable, I can’t stop coughing, my life sucks, why me, wild coughing fits scare the bejeezus out of me…waah!

I guess if you speak just loud enough, something might actually change. Like a swath of my medication. Between Friday afternoon and Monday morning no less, I made these docs get off their loathsome, spotty behinds (I can’t take credit for the latter…it’s Monty Python) and haul ass. I didn’t know I could do that.

Yes, Chip made the phone calls, sent the faxes, and did the follow up, but after I had had enough with the status quo. My status quo stinks. I’ve actually become sort of, kind of, a little bit used to losing my breath to the point where everything that can, exits at the closest orifice. (Before I do my hallway laps, I sit on the crapper for so damned long to get whatever I can out. I’d rather my waste material exit where it’s supposed to rather than while I’m sitting my goddamned wheelchair into which I collapse after a “lap.”

I lied.

When I’m beyond out of breath, I’m only dealing with waste products. Once, with chemo, everything said bye, bye. (I’m insane. I’ve walked two blocks and, strangely, I become nauseated until I urgently need to vomit. (That’s not supposed to happen. I shouldn’t feel the effects of the chemo until four hours have elapsed.) I’m at 77^th and 3^rd. What do I do? All the cars were parked fairly close together. I couldn’t, heavens, mess up the sidewalk! But I kept in for a few valuable seconds what turned out to be the best projectile vomiting experience ever! Depending on how you define “best.” Boy, did that stuff fly!

The nuclear explosion of vomit remained inside my pathetic self until I found a suitable spot between two parked cars. By choosing this particular spot, there would be no evidence of the carnage in front of any of the car doors. I really hate stepping in dog shit (or cat shit as the case may be), and I really hate walking into some stranger’s vomit. It’s plain disgusting. That night I could sleep easy knowing that I didn’t subject anyone to my expectorations. I, even, with the help of my beloved friend, Dr. Audge, who keeps a million bags on her for her daughter who invariably gets carsick, kept the cab that took me home clean. That took some doing, but it never would have been possible without Audge’s bag. Bless you, Audgela.

But yes, I do try and excrete all I can before attempting exercise. Because if I’m going to pee in my pants, it better not be more that a drop or two. So far, that’s been the worst of it. I despise not being able to breathe, but I now accept the fact that it will never come back. As you know all too well from my last post, the damned coughing scares the shit out of me.

Man, this morning the pulmonologist prescribed this fresh-from-the-farm gel caps (“pearls”) that stop the coughing mechanism. You still are able to cough when you need to, (you won’t choke to death) but you won’t when you don’t. Woohoo! So far, so good. Dr. Pulmonologist also changed one of the drugs in the nebulizer, so I can have relief all day. We have improvement.

Charlie, you are beyond right. You have to be your own advocate, because your doctors aren’t going to give you the heads up about new drugs that may help you live another day. Or live a better day. Right now, all I want is to have a life that I would choose to live given all my obvious limitations. I want my conscious moments to be as pleasant as they can be. I think after this wild weekend (for me) of change this may yet be possible. To be continued.

Which leads me back to my beloved Maggot Brain. “Maggot Brain” is a remarkable guitar instrumental that leaves me breathless, speechless, and awestruck every time I listen to it. It begins with a word from god or at the very least, the guy who is the disembodied Voice at The Hayden Planetarium if he were a black dude.

But no. I think it’s George Clinton speaking to us all from somewhere out in the galaxy. (Forget the end of The Moody Blues Days of Future Past. That’s just plain silly and pretentious. George Clinton may be too. But I don’t think he’d mind if you told him so. I think he would shake his head internally knowing that you just don’t get it.) He says:

(static, echo)

Mother Earth is pregnant for the third time

For y'all have knocked her up


I have tasted the maggots in the mind of the universe


I was not offended


For I knew I had to rise above it all


Or drown in my own shit

Amen.

It's Nixon, By A Nose!

Have you all forgotten me? No, sweet ones, you haven’t. I wish I could. No such luck. Damn. The oxy saga finally comes to a flaccid ending. (If endings can be such. Well, they can now. You wanna argue with an extremely pissy, ill, menopausal woman? Are you crazy?)

I never felt comfortable using the oxy as my “anti-suicide pill” or as my “mood enhancer” though it performed the latter function with aplomb. My mother, of all people, was so happy to see her usually miserable daughter so gregarious, so social, so relaxed. I suppose, if my choice were that or nothing, depending on my mood, I might as well go for the narcotic that would quickly have me addicted and wanting more. Not a good look.

My psychopharmacologist missed last Thursday’s phone appointment to solve my conundrum: misery or not giving a shit, salut! What the fuck was that all about? Chip thought I didn’t want the appointment rescheduled, didn’t reschedule it assuming that everyone agreed that oxycodone was everyone’s drug of choice. I knew that was no solution, and I was shocked that Ira (the psychopharmacologist) would go along with this. We had our belated appointment yesterday. I was only taking the oxy when my back was not happy and was yammering for a hit of something, thank you very much. And that’s what I did.

Ira thinks that last week’s walk to the very edge of the precipice may have been partly caused by withdrawal from those few measly pills I’d taken, I thought, so prudently. So I thought. I’ve since gathered, best to take it regularly, on a schedule, for as long as necessary, and them wean yourself off the stuff by cutting your dose little by little. I know this shit. I just haven’t had to deal with this all that often in my life.

Yes, I know you can’t go cold turkey on psychotropic drugs, as my internist so lovingly refers to them. I’ve been weaned off those before. I know the drill. But getting weaned off anything is pretty unusual these days. It feels to me that I just keep adding drugs and upping dosages. Nothing fun, mind you. But perhaps life saving, so I shouldn’t complain that they don’t have me doing the hula, cannula, tubing and all, in my living room. Though wouldn’t that be fun if I had the urge? Hmmmm. Oxy, oxy, oxy.

Resolved after my appointment with Ira, Effexor has been upped by fifty percent. (Effexor just kills sex drive. Whoopee. One more thing to look forward to.) That’s a whole lot of Effexor. I should know in a day or two if I can tolerate that high a dose. If so, I’ll need some time to see if I hop back from that precipice and contemplate dancing the hula. (Sorry, y’all, that’s the best I can do.) If I spent last week being proverbially kicked in the nuts from oxycodone withdrawal, I’d really not like to go there again.

I’m no longer in excruciating pain. That’s one reason I can be so blasé about dropping the oxy. Slowly, achingly, my back improves. Maybe, I can get by with Alleve. (Glass half full.)

I can’t catch a break. Just when I think its safe to go back in the water…(Actually, I wonder when that might be. I love the ocean. I even love swimming pools. Being wheeled along Long Island’s gorgeous beaches comes in second, though just by a rather large and eminently caricature-able nose, to Richard Nixon walking along the beach in a suit and wing tips. I’d be ridiculous. (Though he wins the ridiculous contest, no question. Certainly not in my mind.) And impossible to push along- at least on the dry sand. What a nightmare.

No today, and it has been happening since the heat has poured out of our radiators, my throat and sinuses are filled with a glue-like mucous (Nasty but healthy mucous. No funky colors. When that happens, no if that happens, then I’ll be up shit’s creek.) I can’t get the crap out without ever more violent coughing. I was coughing like that when I first came out of the hospital. That’s when coughing was responsible for two fractured ribs. Albeit hairline cracks, but cracks just the same. That’s not normal. That’s fucked up. This time around, my hearty pecs protect my ribs and allow me to breathe through the scarred wreckage that are my lungs. (Yes, I worked on the pecs some, but they really appeared without any conscious help from me. Amazing what the body can do when forced to. I love those damned pecs. They’re seriously multi-purpose. They also keep my sagging middle-aged breasts a bit less saggy than they would if left to their own devices.)

So I’m coughing again. Instead of cracking ribs, these coughs mostly throw my back out of joint. The clavicles are a nice easy target that my coughs toy with regularly. I also get lumps on my back just about anywhere you slice it, and I point them out to Rachel, my very fine masseuse, as if she’d miss them on her own. Oy.

Today, I had finished stretching my neck when I was overcome with Coughs From Hell. Those are the ones that fail to move much of anything, go on for what feels like an eternity, and make it impossible for me to catch my breath. Oh shit. I can’t catch my breath. I panic, because besides making me a fine set of pecs, my body panics all on it’s own with no help from me. During a tiny respite, I take my four o’clock pills twenty minutes early, because that batch contains a Klonopin. I thought that was clever of me to do that, don’t you? Too late, I was already in the thick of it.

The best cough suppressant is oxycodone. I swear. If I hadn’t quit Brownies I’d make a Brownies promise to you all. Just when I thought I had this one figured out, no more oxy, the insidious drug calls out, “Wait for me!” (“ Just when I thought I was out... they pull me back in.”) I have to wait and see. If this fucking cough is what I have to look forward to all winter, it’ll be…long time no see, Mr. Codone!