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[Cancer]

[cancer] NIH Day Seven

I am now in my seventh day here. (Eighth? Not sure where the count begins.) I’m still a bit addled from the Cyclophosphamide dosages over the weekend. (Just typing the name makes me feel ill, via the mighty power of suggestion. And I am still retching horribly from time to time.) But it’s pulling together. I had a good night’s sleep, albeit somewhat interrupted. Today through Friday they;re dosing me with Fludarabine, which is considerably less ugly. Friday or Saturday I start IL-2, which will probably be the toughest med I’ll ever encounter. I am more than a little afraid. In fact, I am very afraid.

I’ve made some observations here, which I offer in no particular order except that the one with the somewhat triggery and gross medical photograph will be under a cut at the end,

Toilets in the patient rooms

Whatever healthcare architect specified the toilets in the patient rooms here had obviously never used one. They’re the kind that stick out from the wall, and oval of the seat is longer that the usual American toilet design. And they have a very high waterline. Like so:

NIH toilet

Note the red line. Think about it for a minute. Lisa Costello says when she uses the one in the visitor bathroom, she often gives herself a finger bath whilst cleaning. Me, I dangle. As most men due to some degree. Little Elvis is of a felicitous size and shape, but my cremasteric reflex is in good working order, so he’s usually safe. However, my testicles drop right into the soup every time.

I’m sure I don’t have to draw you (another) picture. Let’s just say my management strategies for this are annoyingly kindergarten-like, as I’m not normally in the habit of clutching my junk while I poop.

Why in the hell anyone thought this was a good design, I cannot imagine.

How best to pee in a handheld urinal (if you’re me)

I have discovered that the best way for me to pee in one of those little plastic urinals is to lean my forehand against the bathroom wall, tilting my weight forward, and use my two hands as God intended them to be used in that situation. I have no idea why this should be true.

Hot water? In a hospital? What hot water?

As long as we’re on the subject of plumbing design in a healthcare facility, the hot water at the tap is very, very slow. If it hasn’t been used for a while, I’m talking two-rounds-of-Happy-Birthday slow. I understand instant-on hot water isn’t practical from an energy efficiency point of view, but maybe they could have put a few more boilers in the architecture. I mean, it’s not like I have any reasons to need to keep washing my hands a lot.

The saga of my hospital bed

Oh, the bed. It’s a perfectly good bed. All the mechanical bits work just fine. Up, down, et cetera. But the light controls and nurse call built into the flip-up side panels did not. I asked about this on checking in. “Just use the remote”, I was told. The remote, btw, provides no visual feedback such as an orange light or something when you press the nurse call. I pointed out this was a significant safety hazard, because if I awoke confused or seizing or something, the side panel nurse call was much more obvious and easy to reach, and I might night be able to hunt for the remote. A non-functioning emergency call button is a hazard, period. “Loop the remote around the side rail.”

I’m sure Risk Management would love to hear all that.

So we kept asking. And asking. Nurses, doctors, maintenance guys, the ward administrator. The problem, it quickly devolved, was the bed’s data output cable had a head that was incompatible with the data input on the utility wall behind the bed. We asked for another bed. No.

The problem with being in a hospital is that if you’re trying to accomplish something that doesn’t flow up through your nurse to your doctor, that’s very hard to do. Administration, infrastructure, physical plant and so forth are deliberately invisible to the patients.

Finally a guy came in to change our clock battery for DST. He was a hospital electrician. We asked him about the bed. No, not his job, but he knew who’s job it was. Meanwhile, I think the ward admin had finally gotten hold of someone. (Bed services apparently not being available over the weekend.) The bed mechanic showed up in due course, agreed with our diagnosis, and said he’d fix it. He came back half an hour later with a cart full of tools and equipment and tore apart the utility wall to swap out the bed data interface.

All ended well. But we must have asked literally fifteen people. It was just weird.

My footlight

Speaking of physical plant, there’s a small footlight in my room next to the bathroom door. I suppose it’s intended for night use. It’s inside the wall, and provides a corresponding glow on the other side. Except the filter or whatever on my side has slipped. So when I turn the footlight on, it shines directly in my eyes in bed with an unmediated glow of a bulb. I have asked to have this fixed as many times as I’ve asked for the bed to be fixed, but we haven’t yet found the vice-president of footlights at NIH, apparently.

Little roly-poly bits on the floor

I am attended by two nurses per day on 12-hour shifts. The odd medical assistant wanders through to do vitals. Episodically doctors appear like Canadian trap door alligators. And they leave behind a trail of syringe caps and similar small plastic items on the floor. I find this an astonishing fall hazard, as small round things may as well be ball bearings if you hit them at just the appropriate angle. Another item for Risk Management I guess.

Using the incentive spirometer to bring down a fever

One of my least favorite medical devices in the incentive spirometer. They feature prominently in post-operative recovery regimes.

incentive_spirometer

I have learned a new use for them which surprised me considerably. If I measure a low to moderate fever, the nurses here will sometimes have me use the incentive spirometer for several minutes. It can bring my temperature down by a degree Centigrade or more. Weird.

The fifteen-minute Tylenol

Yesterday, NIH implemented a new medication management system. Literally every pill or dosage has to be scanned before it can go into me. This has obvious applications for both patient care and inventory control. It’s also, like all new release software, buggy and strange.

Last night, my nurse was trying to give me 650 mg of Tylenol. For some reason, my orders were written as two separate 325 mg doses. This resulted in fifteen minutes of exasperated effort on her part, and that of another nurse, before they just gave me the damn Tylenol and went off to work this out somewhere else. Given that I was on the edge of falling asleep at the time, and really wanted the Tylenol so I could go lights out, this was frustrating as all get out. Ah, progress.

My inoperative lungs

The bottom third of my lungs are silent now. I no longer have use of them. The tumors have crowded out the healthy tissue and blocked air access. So when a doctor or nurse listens to my lungs, they sometimes comment on this. I am always on the edge of short of breath, and find this somewhere between creepy and terrifying.

The twisted pair inside my chest

Astute readers will recall that last week I had a dual-lumen Hickman catheter installed in my left chest by Interventional Radiology. It hasn’t worked worth a damn since.

image

Inputs are fine. They can pump stuff down all day long. And if they’re pumping down, they can extract. But right now I’m only on the infuser about 30 minutes per day. And after a while, output shuts down. No blood draws. Apparently I either have excellent clotting factors, or the lines are twisted in my chest and pinching one another. The horrible, whole-body spasms I’ve been having with the wrenching and coughing can’t be helping that either. Right now I’m waiting out a TPA push to see if that clears. Otherwise I’m afraid they’re going to put me on KVO (Keep Vein Open) orders with a continuous drip. My real terror here is that they’ll decide to take this out and put another one in.

Meh.


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