I’ve never been hospitalized, with the exception of outpatient surgical procedures and that sort of thing. Never been in an ambulance, and as expected, the ride made me very car sick. After 14 hours in ER (where I hurled if I so much as moved my eyeballs), I was transferred to ICU, in isolation. My reason for going was extreme shortness of breath and tachycardia, but I was admitted as a possible H1N1 candidate. Apparently there’s an epidemic in these parts…? The cultures returned negative two days later and I was downgraded from ICU, but I was on 5 liters of oxygen per hour through a mask, had a pleural effusion, and was completely winded with a heart rate of 140 after using a bedpan! The first few days were confined to bed, on a liquid diet and Lasix, a powerful diuretic. Life flashing before my eyes? Nope, just trying to get through each moment, mind basically blank. It was all so new and not fun.
I felt yukky. 3 days without brushing my teeth. A prominent community leader (maybe a pastor or choir director or ?) in the next room was resuscitated a couple of times but he passed away, and the floor was full of people, singing hymns in his room, chanting, crying. I was then moved into the oncology telemetric unit with a young psycho woman who I believe was generally bipolar and strung out on every pain med, suffering a flare of Crohn’s disease. This necessitated wearing an eye mask and Bose headphones with music turned on for 3 days, while people walking down the hallway could see right up my gown since the bed was practically in the hallway and no one would ever pull the curtain or door shut. She had 3/4 of the room – window, bathroom, etc, and my bed was basically an afterthought. I finally got a sponge bath on the 5th day and discovered shower caps that self-activate a warm, foamy shampoo that don’t require rinse-off. That was possibly the best thing about the entire stay! Later that day I was moved again at Hubby’s request, in with an elderly woman who had the runs as she had been doing chemo and was severely dehydrated, so she was on continuous fluid IV. Her family stayed over and they read the Bible out loud and did Hail Marys and counted rosary in spanish at all hours of the night and day. Obviously we didn’t know that prior to the move, but it was done, so whatever.
I managed to read a bit more of The Book Thief, but for the most part, the days were focused on a grueling schedule of no sleep and the constant barrage of disturbances – meal time, pill time, vitals check, breathing treatments, passing out from exhaustion, being dehydrated due to liquid restriction (1 liter/day), stomach torn up from all the new meds, bedpan, blood draws, IV meds, placing new IV’s (3x), financial/social work/supervisory compliance personnel badgering at all hours, residents and then attending physicians evaluating and not really confirming what was going on, being baffled by my exceedingly high heart rate, etc. and finally, visits from family and friends.
Eventually my sorta strange but likable internal med doc’s rotation was over and another doc took over. He was very kind and pragmatic and wanted me out of there before I caught some community-acquired infection… as he nervously eyed the roommate’s commode against the curtain. So he booted me with oxygen and prednisone and warned against crowds and crowded places.
Home is dark and quiet, and the beds don’t adjust. It’s been a slow process but I’m now able to VERY SLOWLY dress and get food without completely passing out. My oxygen drops to 85 and my heart rate goes to 120 but recovery can be expected. Pain has the effect of increasing the heart rate so that has to be strictly monitored. Still on liquid restriction, but I was counseled to eat more salt! I was forced to take these sodium pills in hospital and that was a drag.
Roommates from long ago have made their visits, and friends I’ve not seen in awhile. I wonder, when they see how thin I am, if they think I’m on my last leg, or if they think – she’ll get through this, she doesn’t seem like she’s dying yet. I don’t know where I am – am I dying, or am I just craving a fat steak and lobster? I mean, why am I eating potato chips and tapioca pudding at midnight (and watching documentaries about fashion and JD Salinger)? I’m supposed to be writing out the distribution of all my various and sundry non-valuables. Who gets the Bolex 16mm wind-up movie camera/manual editing equipment/projector? Whatever happened to my Canon Super 8mm? Who might want the films, I’m sure they’re compromised from not being stored properly? Actually I don’t have much – just stuff like that – vintage dishes, records, clothing, knickknacks, journals, books, films, a bit of jewelry, mountain bike, some prints. But these things hold meaning for me. They have little monetary but lots of sentimental value, which is why I still want to see the stuff in bins which have been in storage for years. Sigh.
I wonder if my acupuncturist knows a trick for slowing down one’s heart rate, besides meditation? I think I was supposed to see a pulmonologist this week, but scheduled it for next week. And, I’ve not contacted UCLA about my status. My exiting doc said he was advised by Dr. Goldman (UCLA) to get with my local onc to set up some sort of standard chemo. Which tells me he thinks I’m off the trial. Today I received instructions regarding setting up a CT scan in February, which would be the first 9 week confirmatory scan regarding progress or lack thereof. So Goldman hasn’t told anyone else his thoughts on the matter, it appears, or he’s waiting for me to set an exit interview.
I’ll think about this tomorrow.