Saturday, December 23, 2017

Health Update | Lefsetz Letter

I’ve got a lady doctor
She cure the pain for free

That’s from Graham Parker’s initial LP, “Howlin’ Wind.” It was produced by Nick Lowe, the man of the moment, whose bank account was saved by by a cover of his composition “(What’s So Funny ‘Bout) Peace, Love, and Understanding” by Curtis Stigers on the soundtrack of “The Bodyguard,” proving if you’re just prolific enough, hang in there long enough, your ship may come in.

And Graham Parker (and the Rumour!, with guitarist extraordinaire Brinsley Schwarz!) was the great English hope of 1976, at least in America, where he released two albums. But it was not to be his time. Maybe because he released his music on Mercury, maybe because we were passing over punk and grooving to a new sound called new wave, which wasn’t quite here, Parker was neither fish nor fowl, but he was fantastic.

And the second of those two 1976 albums was “Heat Treatment,” produced by the then unknown Robert John “Mutt” Lange, whose name had only graced City Boy LPs, and the truth is the sound on both of these Parker LPs is completely different, the one on “Heat Treatment” is more dense, less immediate, but that’s the album I love best. The white reggae of “Something You’re Goin’ Thru” is right up there with the work of the Police and the closing “Fool’s Gold” is the piece-de-resistance, right up there with those lengthy closers on Elton’s LPs.

And Graham jettisoned Mercury for Arista and never broke through, but those first two LPs are burned into my brain. I remember playing tennis with the new girl in school on our second date and then bringing her to my apartment where she laid on the floor as I played this album. I’m not sure if it sealed the deal, but something did!

And I thought of “Lady Doctor” today. Because just about every dermatologist in this mega-practice is a woman. Can I say that I’d rather see a woman? That they’re often more compassionate? A little less self-impressed?

Anyway, I texted the doctor.

This is a big step for me.

I’ve completely changed my personality, I’m trying to get back to the person I once was, one who stood up for himself, one who PUSHED!

You see my father always said…YOU GOTTA ASK! But after hearing him ask incessantly, after being overloaded by self-promoters intruding upon my time, I turned into the anti-asker. Somehow I became afraid of taking up anybody’s time, fearful they’d get pissed and push me off, reject me. But I texted the dermatologist from the hospital, and I did again yesterday, that’s just how much I was at loose ends.

And that’s why no one likes to give out their cell number. I get iMessages from people all the time who I don’t know. And then they’re pissed when I’m not warm and fuzzy. You can e-mail me like everybody else. Have you ever heard of privacy?

Anyway. the dermatologist did not respond. I believed I’d reached her limit. And when I got no response I made an appointment for a second opinion, after all, I was doing all they said and getting worse.

But when I woke up this morning there were texts and phone calls galore. They wanted me to come in. See the big kahuna, the one with ten pemphigus patients.

Whereupon I worried I wasn’t sick enough. Why is that? You’re existentially pained and when you get attention you say you’re not that bad. But that does remind me of when I got that nuclear medicine test twenty five years ago and I was so much worse than anticipated. And my eyes were starting to crust up again. And the point is…

I’ve got blisters. That’s the nature of pemphigus. And those blisters burst upon the tiniest provocation. And then you’re left with an oozing, sensitive wound. Which is how I got into this mess.

And the itchiness! They say not to scratch but you can’t stop scratching. I woke up Tuesday night and lathered my body with Clobetasol, I just could not sleep, I had the heebie-jeebies. But by time I hit the doctor’s office today…

She was very impressed how bad I was. Took one look at my skin and saw the problem. I was pointing out blisters but she got the point. I was bad.

So here’s the story. Takes about eight weeks for the Rituxan to work. To replace all the bad antibodies.

Meanwhile. the old antibodies are raising hell.

Which is why we must wipe out those old antibodies once again. We need to apply another round of IVIG. Three days in a row, five or six hours. but in the house! That’s right, it’s cheaper to do it at home than the hospital, and who wants to go to the hospital where you might get an infection.

And I need to take prednisone. Every day. And this antibiotic Bactrim, so I don’t get an infection, since all this treatment is lowering my immune system.

And if that doesn’t work…

They’re gonna replace my blood.

That’s right, I’m gonna be Keith Richards fighting the immigration police. Only in this case I’m covering up pemphigus instead of heroin.

But I should be good to go. That’s what the lady doctor, #2, the woman in charge, said today.

I’ve just got to be patient and get there.

And that’s damn near impossible the way I feel now.

Which is why she’s throwing all this treatment at it.

A. Why am I writing so much? As Ray Davies once sang, “Unemployment is unenjoyment.” You think you want time off, you wish you could clear the decks, but when you’ve got 24/7 to watch TV and read you don’t want to watch or read anything, the world goes limp and you become numb. We were made to work.

B. To quote Prince, “I ain’t got no money, but I’m RICH on PERSONALITY! And that personality has allowed me to build this edifice known as “The Lefsetz Letter.” And it comes with perks. Most rewardingly that anybody I write about reads it, and I hear from them. But also the laying on of hands by laymen, in this case veritable MDs. A woman dermatologist in rural Wisconsin whose husband is an avid reader. She’s helped me through the crisis. And this immunologist James L. Friedlander who e-mailed me the following, which I believe is very illuminating:

“So, full disclosure, typically I am not the treating doc for this, but rather get called to consult regularly for patients with pemphigus (both vulgaris and foliaceous) if the treating physician wants to initiate IVIG therapy. I also get consulted often when rituximab is used for any condition, which as you know can cause a lot of infections (pneumonia, sinusitis, and usually only with continued maintenance ritux therapy). Pemphigus is antibody mediated. Fact. So it makes the most sense to use rituximab and IVIG. The rituximab blasts away all of your circulating B cells, and IVIG washes away and neutralizes the bad antibodies, replacing them with good ones, and meanwhile also keeps you free of serious infection while on rituximab. A safer combo than ritux alone. There are plenty of other immunosuppressives to try, though most of those fight T cells (like azathioprine). It doesn’t make as much sense that those would be effective.

Also, I know that I do not get a vote or know every detail, but am doubtful that Gleevec was the underlying trigger…”

C. And in closing, although this is an ongoing story, the lady doctor said that pemphigus foliaceous is harder to treat than pemphigus vulgaris. Although when you recover it’s from the top down. So the skin on my head will clear first.

P.S. She definitely ain’t treating me for free. I’ve got pretty good insurance, and you should have yours. Because when you least expect it, you’re not on “Candid Camera,” rather the gods reach down and mess you up. The bills are staggering. Health care should be a right. I did nothing to get this disease, and no one should be bankrupted because they became ill. But what I’m really saying is if you’ve got something wrong, get professional attention, the real pussies are those who refuse to go to the doctor.

It’s just something I’m going through.

No, that’s a gross understatement for a gross disease. I should be good, but mortality is not out of the question. And every day the pemphigus fights back, with blisters and wounds and pockets of ooze that would be too gross for any horror movie.

Pemphigus Playlist


No comments: