The Infusion

Man, I was really f*cked up.

I'd spell out the f-word, but then you wouldn't receive this. For all the positive stories about the resurgence of e-mail newsletters, in truth it's very hard to get past spam filters. Furthermore, Substack is in financial trouble. It's even asking its writers for cash. This is like the movie studio asking the cast and crew to put money into the production. Never do it. If you're gonna lay down cash do it from dollar one, and own it.

So yesterday I had an infusion of Rituxan at Cedars. That's a legendary hospital in Los Angeles. Used to be atop the pyramid, and then UCLA was built up and now there are two powerhouses, and few independents, they've bought up not only all the facilities, but the doctors too. Now most doctors work for the man. And they hate it. To the point where a certain elite jump ship and go off insurance. And after decades you've found and established a relationship with these providers and you go with them, and it costs you.

But then you realize all you've got is your health.

There's this rock star I correspond with intermittently. She said she had been grappling with health problems. And she's younger than I am. And then there's that lawyer who's just a couple of years older who has crippling back pain. And the friend who has prostate cancer... You may be unscathed today, but that doesn't mean you'll be fine tomorrow. Yes, the boomer generation that believed it would rule forever, would live forever, believes that it's immune, that the rules of life don't apply to them. But this is patently untrue. The body is made to break down. Imagine still driving your first car. That's the equivalent of your body. You're patching it up and cannot buy a new one.

Now Cedars has two infusion centers. One at the hospital, and one on Wilshire. And in truth, you can get someone to give you the infusion at home, but I'm not that rich, I'll drive to save thousands. However, my doctor was surprised when I said I would.

You see I've got this condition pemphigus foliaceus. The odds of you getting it are insignificant. Worry about cancer, not pemphigus. Few people get it, mostly Ashkenazi Jews, and it tends to be triggered by surgery. And if you really want to know what it is, you'll Google it, but I recommend against this. And the way you treat pemphigus foliaceus is with Rituxan, a lymphoma drug. But Rituxan wipes out all your B-cells and then the vaccine doesn't work, not only Covid, but the flu vaccine and...

But everybody is proud of going bare. Yesterday, Mark Cuban got in a Twitter argument with the anti-vaxxers. You see there was finally a study and it turns out almost nobody died from the vaccine, relative to other treatments. But people don't want to believe it. I guess those people are not the beneficiaries of an elite education, which is all about learning how to analyze what is coming down the pike as opposed to accepting it. That's something you learn from being a liberal arts major. Which is one reason our uneducated tech pioneers always get it wrong. Not only can they not see the tech future, they can't see the effects of their products, they're not trained to do so, you see it doesn't pay.

So I don't get this desire to reject modern science. Believe me, if you get really ill you're going to want the hospital to save you. I don't want to die of Covid, but so many people believe they're immune. But they're not. But everybody's so singular today, believing they're not a member of the group, that they don't realize people are dropping like flies, or can no longer taste or smell. Today, you subsume your own feelings, at least don't tell anybody else, because you don't want to appear weak. Then someone will walk over you.

Oh, they're going to try and walk over you anyway. The world runs on bluster. Play and you'll find there are people who put you down, in order to make themselves feel good. It's hard to ignore them, but you must learn how.

But at the hospital, everybody is equal.

Now at the Wilshire infusion center you need a ride, for some reason you can drive yourself to the hospital, the infusion center on Beverly Blvd.

You must wear a mask. You put it on right when you get inside, and then you take the elevator down, underground, and after checking in... They always tell you to come fifteen minutes early, but then they make you wait fifteen minutes... A nurse greets you, weighs you, and shows you to your booth.

Yes, you get your own little nook. With an adjustable chair and even a curtain if you want some privacy. But the curtain is a pain in the ass. You see you have to get up and go to the bathroom, and you take your pole with you...

Yes, your pole. The medication drips in from a bag attached.

So, the first thing they ask you is if you want anything to eat or drink. I've learned through experience not to take the crackers, you get high on the carbs. However, I do go for the apple juice. Yes, apple juice is for when you're young and when you're old, seems no one in between drinks it.

And then you take the pre-meds. The Benadryl and the steroid.

And soon you're numb. Not exactly flying, but in suspended animation. And just when you think you're ready to take a nap, they start dripping the medication into you. They've poked a hole in you earlier, have flushed it out with a drip. And now you get the real thing.

And Rituxan is a lymphoma drug. But lymphoma patients get it once a month, I get it every six months. But now that we have Covid, the key is to wait longer, to the point that the vaccine will work. And I got the bivalent booster at the end of April and...

The dermatologist said to get the Rituxan. You see I've got these spots that itch and they're only going to get worse. And the Rituxan doesn't work instantly, it takes six weeks. And last time I waited so long that even then my symptoms didn't go away. I had to take steroids thereafter. I wanted to avoid this.

But I asked the dermatologist whether I could wait until September, after the new vaccine came out. She said I wouldn't last that long.

And there's a Stanford study that says what I got in April wouldn't be wiped out by this infusion so I agreed.

And I thought it was no big deal until...

I hear all these people say they want to die at home, not the hospital. I've always disagreed. I wanted to be in the hospital, with all that attention and care at my fingertips. Yesterday I changed my mind. You see the hospital is death. Maybe not physical death, but emotional death.

Because of the pre-meds, you can't concentrate. All you can do is scroll endlessly on your phone. And that gets old very soon. And you cease caring. It's very weird. You can't concentrate enough to watch a show on your iPad or to read a book, and you're not quite in suspended animation, and you are conscious... You're just existing.

But it's gonna be over. In this case relatively briefly. Less than four hours.

But I'm at my limit. I didn't realize it previously, but sitting in the chair... You see I had three rounds of IVIG during the winter, that cleanses the blood, wipes the pemphigus cells out, hopefully. It's three days of four or so hours once a month, for three months in a row. This was only gonna be one day. But somehow my tolerance was gone. I was squirming. Holding on. Looking at the bag on the pole, waiting for it to empty. Actually, one time with the IVIG they put plastic over the bottle and I couldn't see how close I was to being finished. But...

Eventually I was done.

And I went to the bathroom. You've got to, otherwise you won't make it home without needing to pee.

And I was hungry and wanted to reward myself. And on the way back home, on little Santa Monica in Beverly Hills, there's a Shake Shack. And parking. And I decided to go in and if they had a bathroom, I'd stay and eat. Sans bathroom I wasn't going to make it.

And by time I got through ordering it was twenty two bucks and change. Huh? I realized I've got no sense of the worth of a dollar anymore.

But even worse, the burger was bland. I needed to go for the real thing, In-N-Out, but that was not convenient. But next time...

And when I finally got home... That's when I realized how awful I felt. I didn't want to do anything, nothing felt good. It was all about waiting for the effect to wear off.

I napped a bit.

And then... Wow, talk about existential depression. All the usual exploits, all I normally do to entertain myself, none of it worked. I surfed a bit online, but I'd already gotten my fill of that back at the hospital. I mean how long was this gonna last?

And I knew I was edgy, and if I spoke with anybody I was gonna blow up. No, this was a personal journey back to reality, however long this was gonna take.

And by late evening I was together enough to watch this Jimmie and Stevie Ray Vaughan documentary. And you've got to pay for it, otherwise I'd say to watch it. It's hard to fathom a plethora of this stuff when it used to be so rare. In other words, you can make a documentary, but good luck getting people to watch it. And the streaming outlets won't pay for them anymore and... Welcome to the modern world, where it seems like you're pissing in the wind 24/7.

Eventually, long after two, I put my head down. And after nightmares I woke up and thought I felt better but after about twenty minutes I realized I was far from 100%. I took some Tylenol, took the edge off.

And now... I'm forcing myself to work. Don't feel up to it, but the opposite, the suspended animation, is anathema, I don't want to go back there.

And believe me, in a couple of days I'll be just fine.

But what gets me is when it comes down to health, nothing else matters, who is President, all the stuff that fills the newspaper. That's for people who are still here, in the flow of things. And you think you are.

Until you're not.

It's going to happen to you, just you wait.

And know you're not alone, I know where you are, I've been there.

But it's not pleasant.

Yet it's inevitable.

And no one really cares. If anything, they just want to deny you health care, as if you should buck up and take personal responsibility. But most of these conditions are natural, there's nothing you can do. And then they arrive and you find that no one really cares about you, they're too invested in themselves. If you die, life won't end, it'll carry on. And even if you get sympathy, your pain is personal.

It's like a bad dream.

But it's real life.

Did you see that Mark Volman of the Turtles has Lewy body dementia? Wow, no one here gets out alive. They tell you this, but you don't really believe it. Until you do.


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