So, a couple weeks ago I posted I was about to have my first Zometa infusion and cross all the things and all that. The universe put together some, hmm, interesting factors the week after that appointment that led to an interruption in my regularly scheduled programming, which also (annoyingly) led to me missing Paganicon entirely. Sigh.
First, this was SK’s first time in the Oncology infusion area, and I think it weirded him out some. Surprisingly I didn’t have much of a reaction: honestly it was more like a “here we are again” feeling for both mind and body as I followed the attendant, declined snacks, accepted ice water, and settled myself into the reclining chair. I kept us far away from other patients, since I didn’t know what anyone else was getting but had to assume they were more immunocompromised than I was that day.
The infusion itself was no big deal: took about an hour and we were out of there and off to get fancy late lunch, because 1) both starving (it was after 2pm) and 2) I’m very conscious of eating enough protein while in any sort of treatment. Then we Barnes & Nobled (yes, I did just make that a verb. No, I’m not sorry.) for a bit, and I intended us to get groceries on the way home, but as per usual I overestimated my capacity after major medical. I wore out about a half-hour after we’d been in the bookstore, and home we went. I was tired the rest of that day, otherwise ok.
Saturday, however. Saturday the “well not everyone has the bone pain side effect, but if you happen to have some you could try Claritin, that seems to help for some reason, we don’t know why” side effects hit like a fucking truck. “Some bone pain” actually means “yeah, all the big bones in your body ache like someone beat them with a sledgehammer and NOTHING helps, no, allergy meds do nothing, and you sort of want to die and a hot shower doesn’t do a damn thing, and all you can really do is lie in bed and cry between sleeping.” So, like the old chemo-Neulasta days, really. SK learned how to make chemo mashed potatoes for me that day, because I couldn’t eat much and I was terrified of throwing up (soft food only, friends, soft food only).
Sunday, my bones felt MUCH better, so apparently that side effect is a one-day misery and then I’m just tired for a day or two. Good to note, since this is a six-month repeated pattern for the next two to three years. Yay. My right eye hurt a little, but I assumed it was allergy or sleep related: I spent most of the day in bed lying on my face, after all.
By Tuesday, my right eye had swelled up all around the eyeball, so it felt uncomfortably as though it was bulging out of my face. Seriously, it looked like I’d had a stroke (my eyelid was half closed) and it FELT like it was going to bounce right out of my head. I called Oncology and asked if I was allowed to take real allergy meds (the good stuff) yet, because I assumed all that swelling was an allergy sinus thing. Finally at 5:30pm, they got back to me with the ok, but I was supposed to go to Urgent Care the next day if it didn’t work.
Advil Cold/Sinus did work, after I got groceries with the poufy eye, which also hurt when I looked in any direction other than straight ahead, but only for about four hours. Wednesday I went to urgent care right when it opened. The trick, I have learned, is to get there as the first or second person in line: I was second, I was seen before 8:15am and was outta there before 8:45. I did not have an allergy thing: I had an eyelid infection of some weird sort, with antibiotics and orders to hot pack it a few times per day and if the swelling gets worse or if I spike a fever to go to the ER.
I took 3 pills total (two on Weds, one on Thurs). Thursday morning, the swelling was the whole right side of my face, including by my ear and down my neck and made my teeth and jaw hurt. I figured that counted as “worse” and went to the ER. Again, luckily, there was no one in front of me. I still thought this was all some sort of weird sinus thing, and was annoyed: I was supposed to go to Paganicon the following day and wanted to be not-swelled up for my book signing. They got me in a gown and checked all the vitals and such and I waited for the ER doc to look me over.
The ER doc sort of poo-pooh’d me coming in with a “well, it takes more than 3 antibiotic pills to work, you know,” like I was being dramatic. She ordered a CT because my medical history makes me somewhat immunocompromised, and she made it sound like she was humoring me. Guess what. CT came back with ORBITAL CELLULITIS. She did not apologize for the attitude, but she was significantly less flippant and rude when she gave me the bad news. I held back the I told you so with Atalantean (that’d be Herculean only with Atalanta, because she was far cooler) effort, and I’m still not sure I should have.
Feel free to look that shit up, but don’t say I didn’t tell you it’s pretty gnarly and you probably shouldn’t. Orbital cellulitis has very specific treatment protocols, because the infection has gotten behind the eyeball and is apparently way too close to the brainpan. So…first, they transferred me to a different hospital: one with an ophthalmologist on staff. Second, they started me on IV antibiotics immediately. Third (which I didn’t know until I got to the second ER), they admitted me to the hospital for “at least two midnights” which is the weirdest measure of time I’ve ever heard.
Yeah. I was in the hospital getting IV antibiotics every 12 hours, including 2am, because the weird infection in my eyelid decided to try to kill me. I came home on Saturday after spending a few days in a WAY too small gown getting poked, bruised, and at one point passive-aggressively fat shamed by one nurse in particular (one other nurse was a damn rock star and I loved her).
The lovely ophthalmologist said, when I asked what the hell I’d done to get this and how I could prevent it, that I was just unlucky. So that’s both reassuring and…not at all. Side note: apparently hospital opthas travel around with a bigass briefcase that looks very spy-worthy and has all their instrumentation with them. Mine showed up at 8:30pm and was quite pregnant (the doctor, not the briefcase), so I felt a little guilty that she was lugging this huge heavy case around so late at night after clinic hours on my behalf. Also, she poked me ON the eyeballs (after numbing them with drops) with a weird little pen thingy to test pressure, which I forgive her for because she was kind and made sure my eyeball wasn’t going to explode or anything. But still, ish.
Anyway. I’m home, I’m back at work, my eyeballs are fine, and all is well except I missed all my obligations AND fun last weekend because the universe says it was my turn to be unlucky. I did catch up on a fabulous book (see yesterday’s review post of The Book Witch by Meg Shaffer) and some other reading. FYI: should you ever need the information, the hospitalist highly recommends Activia probiotic drinks for that over anything else you can get. She didn’t prescribe anything or say I should go to the health store for fancy probiotic anything: said those little 4oz drinks work the best. For what it’s worth, I thought I’d pass that along.
Was this a side effect of my infusion? No. Was this an indirect result of my immune system dipping because of the infusion? I think so, but I can’t prove it. Can I prevent it from happening again? No, because it was “bad luck”. My next hell day infusion is in September, so I’m free for the next six months. Then we’ll see, I guess. Cancer survivorship is fun, modern medicine is fabulous, all is well, I’m not dead.
No Pithy Phrase 