Rowyn (rowyn) wrote,
Rowyn
rowyn

Health Crisis Update

Last Friday, I took Lut, my partner for the last 20 years, to the emergency room due to severe back pain and some other worrisome issues: he'd started bruising very easily, and he'd had a few odd cognitive problems. The night before, he'd referred to windows as a "vents" repeatedly, insisting for several minutes that "vent" was the right word even after I pointed it out. I thought the cognitive impairment was from lack of sleep: he'd been hurting a lot and unable to sleep properly due to the pain.

I had expected the ER trip to result in "we don't know what's wrong with him, here's a referral to a specialist and a physical therapist."

Instead, they discovered a whole host of things-wrong-with-him, all of which pointed to multiple myeloma: bone marrow cancer. The specific thing that's causing the back pain is two fractured/compressed vertebrae. The PA in the ER admitted him to the hospital. He has been there since. They had him in the oncology ward until Thursday, when they did a biopsy under a sedative because he'd been unable to lie on his side for the time needed to do it under a local anesthetic. His heart stopped under the anesthetic, and they revived him but moved him to the PCU. Then they moved him to the ICU because the biospy site kept bleeding.

The biopsy site has since stopped bleeding and they said they'd move him back to the PCU yesterday, but he's still in ICU now because there isn't a room in the PCU for him.

This has been the worst week of my life to date. A little voice in my head keeps adding "and there are going to be worse ones than this yet to come." This is the downside of getting older.

Lut's overall condition has generally deteriorated since he was admitted. For the first few days, he'd have occasional confusion: he didn't know where he was or what was going on or why. He had hallucinations and delusions as well, explanations his brain made up for things it could no longer understand rationally. For a while, he'd snap out of the confusion after a few minutes (or sometimes half a day) and be back to himself, although he still had trouble with some normal mental activities.

By Wednesday night, the confusion and hallucinations were persistent rather than occasional. He hasn't understood where he is and what's happening for the last four days.

I don't know what's going on with his head at all. They did a scan on it a week ago Saturday because of the occasional confusion, but it didn't show anything. It could be several things: lower oxygen in his blood, higher ammonia, pain medication, I forget what else. But they've addressed those things and it doesn't seem to get better.

I really want him back to rational again. He's aware that he's not rational and it scares him. I know, from prior conversations with him, that he never wanted to be alive with severe cognitive impairment.

When we checked him in to the hospital, they asked about a DNR and he looked at me. I said, "Resuscitate him." He was in bad shape but he was still himself.

I keep wondering if I made the right call.

And it's too late now to ask him.

The biopsy results will not be back until Monday or Tuesday, and the oncologist can't make a formal diagnosis and start treatment until then.

I spent 24 hours at work last week, and I've come home to sleep and feed the cat every day except Thursday night, when I slept in the ICU. My waking hours have pretty much been at the hospital since Lut was admitted. I had a rental car for several days last week, and I'm going to rent one for a month starting Monday because it seems pretty clear that I'll need one. Biking to the hospital isn't a problem -- it's a 15 mile round trip and I routinely ride 10 miles after work anyway. But it takes too long, and I'd rather spend that time with Lut.

If I don't actually need a car for the entire month because Lut suddenly gets much better and comes home and only needs rare follow-up trips, I am totally taking it as a win. Please, Universe, feel free to make me waste money in this fashion. Thank you.

Renting a car for a month at a time is not a great long-term solution. I should probably buy one. But buying a car is a complicated expensive decision and renting a car is easy so I'm just doing that for now. Hopefully in 30 days I can figure out what our needs are and find a better fix.

I'm probably not going to be responding to comments. This is a pretty hard topic to write about, which is part of why it's taken so long to post something. Well wishes and prayers are appreciated, however.

Also, you don't have to say anything. I never know what to say in situations like this either. It's all right. Sometimes there aren't words.

This entry was originally posted at http://rowyn.dreamwidth.org/610933.html. Please comment there using OpenID.
Tags: crisis, life
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