One of the more surreal episodes in this strange adventure was going to the hospital in Iowa City to get a muscle biopsy. This turned out to take place in a full, television-style operating room in the neurosurgery department no less! We were there for 11 hours.
I’d read online that a muscle biopsy was often done with a needle extractor, which seemed like pretty much no big deal. Like getting a shot in the bicep maybe. However it quickly became apparent that this wasn’t going to be the case. The muscle biopsy they were going to perform would involve a two inch incision, a full-on operating room, an hour of surgery, and around seven nurses, doctors and anesthesiologists…
The specialist, while he was immediately quite sure that my condition was dermatomyositis, needed to wait until he got a muscle biopsy confirmation (how do you see dermatomyositis in a muscle?!) before starting me on prednisone because, apparently, steroids can change what they find in the muscle. Fortunately he was able to get me in ASAP (though a week and a half was still more than I wanted to wait, getting weaker and weaker all the while) and I was able to start the prednisone the very next day.
We had to be at the hospital at 8am on the day of the surgery and didn’t end up leaving until 7pm: 11 hours at the hospital! This meant getting up at 5:45 and taking a sparkling morning car ride through cornfields up to the big city and the hospital complex. They had, I wasn’t sure why, booked me for two appointments, one at 8 and one at 12:45. They said the first was a “pre-op work-up” that usually happened the day before. So I had to go in at 8am to what? sign paperwork? Turns out it was blood tests, a pee test, consent forms and a heap of information. This is when I found out about the two-inch incision and the hour long surgery.
Then the endless waiting began… Probably all this sounds totally familiar to anyone who’s had any kind of surgery before, but I’d never done anything remotely like it and besides I’d honestly had no idea that I was actually coming in for “surgery”. The surgery waiting room involved another pee test (for pregnancy: but I‘m soooo not pregnant, I’ve never been so not pregnant), taking off all my clothes and sitting around in a plastic muumuu plugged bizarrely into an air-conditioning pipe, being given mesh hospital granny panties and told to take my tampon out (riiiight, let’s not and say I did…), and being poked by more needles for an anesthetic IV. For some reason both both of the needle experiences that day took the nurses two tries; perhaps my veins were over it and trying to run away.
And then hours and hours and hours past while they ran over with the last surgery in the room that was scheduled and I sat around in my immense purple garbage bag playing boggle on the iPad with my mom. It was three o’clock before they put me on a cart and took me to the surgery room, three o’clock on a day when I wasn’t supposed to have eaten at all. I had, however, had some fruit earlier which I was super glad about but probably shouldn’t have copped to because it made the anesthesiologist nervous. The huge silver lining of all this waiting time was that I managed to morph a two-inch incision in my bicep into a two-inch incision in my shoulder, which somehow felt, and still feels, immeasurably better. Because of the long wait the surgeons were able to confirm with my doctor that this would be an acceptable switch.
The actual surgery was kind of fun. I was floating around in a happy twilight land of pleasant thoughts, looking up at the bottom of a silver tray with a polar bear etched on it. I thought it was odd that the bottom of a tray was all I could see, no people, nothing, and imagined painting them all with interesting scenes so that the people lying there could have something fun and pretty to look at. The rest of the afternoon and evening floated away on a haze of Oxycodone…
I can’t even begin to imagine what the bill is going to look like from the whole day, 8 grand? 10? There were seven people in the operating room alone for the whole hour, not to mention the several nurses I’d seen throughout the rest of the day.
Thank god for expansion of Medicaid.