Oh, What Fun

Sunday night week ago (the 10th), I was so weak that while I’m putting ice, drink mix and water in my drink bottle, I have to stop and rest four times. Fortunately, its only about four o’clock in the afternoon and I can call down to the front desk and have a nurse from assisted living come up. He calls the ambulance and off I go. We will gloss over the episode of projectile vomiting I had shortly after getting to a room at about 1 a.m. and go straight to the hospitalist deciding there’s this one medication I don’t need to be taking and decided it would be perfectly fine to cold turkey me off a medication that must be tapered over 2 weeks to be discontinued because stopping it abruptly can cause serious neurological consequences. I had to threaten to go home against medical advice before they’d give it to me, and I was already suffering some withdrawal symptoms (ants in the brain!).

In the meantime, they’ve decided I must have some kind of infection and have started me on vancomycin. I have a really messed up metabolism and I’m very allergic to molds; most antibiotics are mold-derived, including vancomycin, and they’re giving it to me too fast besides. It’s called Red Man Syndrome for a reason. I’m beet red with a splotchy rash, and they’re having a committee meeting trying to figure out what’s going on and is this actually Red Man.

My hands are peeling raw, my face is peeling. Do they stop all antibiotics? No. They change to a different one which causes intense itching all over my body for over an hour until they finally decide to give me some IV Benadryl and Atarax, which does take the edge off.

My histamine response is already in a tizzy and I proceed to have a full blown asthma attack, the like of which I’ve never had, even when I was living in the house with black mold in the attic in 2014. (and hadn’t needed any asthma medication at all since moving out of it.) We’re talking breathing treatment with nebulized albuterol because of severe bronchospasm asthma attack. That’s when they decide maybe they’d better stop the antibiotics — like the three sets of negative cultures doesn’t clue them . . .

And all the time I’m there, they’re pumping me full of IV fluids faster than my poor little kidneys can throw it off — to the tune of gaining 24 pounds of nothing but fluid in a week. So I already am having trouble breathing because my spleen and liver are enlarged and there’s no room for my lungs to expand downward. Now I’m in fluid overload and gasping for breath at the slightest exertion. Lasix! We finally managed to get enough fluid off me so that I could go home Sunday evening.

And they’ve got me scheduled for doctor’s appointments immediately Monday morning. No way I can drive myself. Carillon can drive me but they need 24 hours notice . . . I was able to get them rescheduled.

Oh, and did I mention they issued new key cards while I was in hospital and I had to call security to let me back in my apartment. Security had to resort to the actual metal mechanical emergency pass key to get my apartment door open because her key cards wouldn’t work either — nor do my new ones. Tuesday maintenance had to change out my whole door lock to a newer kind. And fix my broke doorbell. And the internet is down. Again.

I could have coped just fine if they hadn’t messed up my hands. That just adds two orders of magnitude of difficulty to everything. The skin on my hands is peeling like a snake and in places is cracked down to bleeding. Thank goodness I happened to have a box of latex gloves I got when mom’s floor had COVID, or going to the bathroom would have been extremely problematic . . .

During my January to October stint of chemo in 2022, whenever this one nurse would access my port, she would give me the packet of gloves that come in this little kit you use with the stuff you need to do that, and I had about 6-7 packets of those gloves, which are latex free. When my new oncologist saw me Wednesday, he prescribed some Silvadene cream for my hands, and then I put these gloves on. Thank goodness that’s helping.

My whole body is flaking like a really bad sunburn. My face is peeling. My lips and nose openings are peeling. Imagine painting your face with a thick coat of white glue and having it dry. It pulls my eyelids in odd directions and makes seeing out of my glasses problematic.

I’ve finally managed to throw off all but about 5 pounds of fluid now, and my lower legs no longer look like the Michelin Man. I seem to have found my ankles again. My strength is coming back. My hands are noticeably improved. I’ve turned the corner. They have me on 20 mg of prednisone a day to chill out my histamines and help with my enlarged spleen, and I’m not nearly so wired as I get with larger doses.

The white orchid started to bloom while I was in the hospital. That’s three for four. The flower spike on #4 orchid continues to grow. The arrowhead plant has embarked on a campaign of world domination. The Christmas cactus has been budding and asserting its dominance. The tumult and the shouting has died. The captains and the kings have departed. Elvis has left the building. Slowly but surely, things are settling back down into what passes for normalcy these days.

Saw something the other day about human insulin cells especially modified to release insulin when exposed to sound. They tried various types of music — orchestral, classical, Broadway show tunes — to stimulate insulin production. Guess what music worked best. Queen. We Will Rock You. I’ve been giggling about it for days . . .