Nurse conversation, Saturday morning:
She asked about trach cleaning. “Not this morning yet. Yesterday, yes” And about pain. “The stitches hurt a little, maybe because I slept on my side?” “Could I get more of that Rox…? pain medicine?” … She asked a few questions. When: “Surgery was Wednesday.” Trach cleaning: “It’s no fun, but yes, It went well all day yesterday.” Discharge: “Monday, I hope.”
An admissions nurse came with forms to sign. Fine time to admit me after I’ve been there for three days, hm? She wanted me to sign forms I had had already signed. Idiotic.
Stacy and Jessica visited in the morning: (?) “It’s from Sheila 
“ “You can move those papers and sit.” Now, If I remember, I think they launched into something about the astronomy programs at the Science museum… “Good for you.” “Never did that.” “I’d still like to sometime.” “Maybe even volunteer there.” … They invited me once.” … ?) “And watch duck boats ” … “When it rains it pours!” (Funny how disjointed this is. Jessica’s influence.)
Then within minutes of Jessica and Stacy, Al and Sheila appear: “You can clear off that chair — just put stuff on the floor.” “Twice before — you and Sheila have been alternating visits here.” …(?) “She took away my voice!” Sheila asked about “Night Watch,” the book she brought me. “Good book. fun!” Handing the pad to all then, “Hi, How are you?” He wrote, “OK, Thanks! “ I wrote back “Your’re the first to write on my pad. Most people talk.” He laughed and explained he was too used to writing for his deaf friend. “So this is kind of backwards from that.”
I think Jessica hijacked them with stories for a while then, and Stacy sat with me started right in to talk about me coming home. It was the hard subject. “Depends… we have to talk.” “I don’t think I can come home to your place. Yesterday was exhausting for so many talks with hospital social workers.” So actually, that’s why Sheila brought Al today to see if I could go to his place. Maybe just for a week until I find some new place but… I though of another person I might ask.” “Andrea” “She’s my TS friend in JP.” I wrote the phone number. “Yes, that’s her.” “So I thought I might ask you to call her for me? I don’t know if she’s home now, but you want to try?” “So… you might ask this crowd to take a walk. (I just thought you would want quiet.)
Stacy starts to call. Al and Sheila disappear, then Jessica. Andrea wasn’t home so Stacy just left a message. “It’s not a big surprise that she wasn’t home.” “She’s a busy person, and I don’t know if she works Saturdays, but if so she doesn’t get home until like…8?”
We talked about the Boyan book: “By the end of the book, Boylan was calling herself a ‘former TS’ all done with the ‘trans,’ just a woman now. Jessica returned then, escorted by an angry nurse. To Jessica about Al and Sheila: “you can invite them back.” She had no idea where they where. “Did they leave?” She asked about Josh, the stuffed animal. “Josh likes it here. A warm body to sleep with every night!” “Nurses like him too.” “So, what else is new?” “Did you see the [Youth Pride] parade today?” “There will be tables and stuff. Parade was 12 – 1. ‘Festival’ was to run to 6 or something.” “I’m sure.” “She shouldn’t even be here.” Stacy picked up “Night Watch.” “You know Terry Pratchett?”
Stacy leaves. Al conversation, I think: “It’s good to see you.” … “They’ve been tiring for me too.” “I feel better today.” More about Stacy’s visits: “Yeah, first time I was asleep, then last time I was falling asleep on her.” “I slept well last night.” “In bed early, slept hard.” Answering Jessica, about Josh: “Flea collar?” “Yep, noticed that already.” We stared out the window. “Sometimes helicopters land here. They hover right outside the window here.” They circle around this black glass building and land on the back side of it somehow.” “So, pleasures are simple.” “That’s all” “It helps to change positions in bed. I sit like this a lot.” “I have to be happy with small expression like this — sitting posture, signing ‘Sonia’ on my meal order, searing a silly hair net to cover imaginary hair…” “Some of the nurses get it and are happy to call me Sonia.” “Some kind of avoid saying my name.” “This is one of the more attentive nurses. She’s been eager to see that I’m doing all the cleaning and everything.” “But also, I finally got to take a sponge bath yesterday. That was nice.” …(?) “I thought it was for the food!” “Duh! Must be the guy in me.” “I like that.” “Either way.” “You think you’re going to the festival?” “See if you can buy me something from one of the vendors?” “Jewelry maybe?” “I know I got a pair of earrings there last year. They were hoops with wood beads. The beads kept falling off. Then finally I lost one of the hoops anyway.” “Not the vendor’s fault.” “I just destroy and lose jewelry like crazy.” “find one that will weld they hoop shut so it stays in my ear.” Puzzled faces. “Sonia humor very dry.”
Diet again, for some reason: “They eat what their bodies tell them.” Our bodies voices are drowned out by advertisers. We can’t hear the voice of reason.” “I ordered chocolate cake with dinner “ “It was fairly early — 5ish — last night.” “I try to eat a lighter lunch and a bigger dinner — so I don’t get too hungry at night.” “They’re not weighing me here.” “They keep asking if I am eating, like they are used to people not eating.” “i’ve been eating plenty.” “So, not a big lunch but still a couple of pretty high calorie items. I probably ordered twice as many calories for dinner.” “I shouldn’t be here long either way.”
(Jessica, something about riding a bus.) “That sucks. Trains are so much more comfortable.” “You took a bus to NYC?” “Then how did you get to Triangles?” “Triangles Tiffany?” “Ah, ok.” “I think there are lots of Tiffanys, but only one is the organizer.”
A nurse appears. “Swallowing is now fun. I do it anyway.” Showing the pad to the group then, “Ok, she wants me to do the cleaning. I should…”
Al and Sheila return. “There. All done with grossness for now.” “Sorry you walked in on that.” Sheila talks. Al stands at a distance nervously and avoids all eye contact. “Yeah. No worries. This hole in my throat won’t close up or anything.” … “People have been bringing me too much already. I have four books here. I think Stacy was trying to leave me four others.” “Yes and she wanted to bring food too. No, no, no, Stacy.” … “I loved my grilled cheese and tomato soup for lunch today.” My comment was intended for Sheila, but her wanting to include everybody, she kept passing the clipboard around for all to read. I protested. “Not for these silly vegetarians to see!” “Actually true!” I did have a vegetarian lunch, just not vegan.” “Orchid diet! Get all your nutrition from the air!” Speaking of air, someone commented on the oxygen hose at my neck. “It’s water to humidify the air, cuz, there are fresh stitches that could get dry and crack, and yeah, the mouth and nose moisturizes the air on the way down usually. so this kind of replaces that comfort.” … “I think I would prefer my stuffed animals to look happier.” Jessica was off and running on the subject of stuffed animals. I cautioned Sheila, “Danger! There are hundreds of animals. This can be a long conversation…”
Knowing that Al was there on my request, and that he had looked extremely uncomfortable the whole time. I edged into the discharge problem with Sheila. “So, the phone call I asked Stacy to make was to another friend that might have a room for me to stay for a bit.” “She wasn’t home so Stacy just left a message.” “Hopefully we’ll hear back from her latter tonight or tomorrow.” “No other news really.” Night Watch: “I’m on p. 32 ” “I had to start over after about 15 pages.” “I thought by then I was starting to get the style of writing and wanted to go back and pick up whatever I had missed. You ever do that with books? Sometimes I have to.” “I had one teacher say you should read a book three times. Another (jokingly, I hope) said you should spend as much time read it it as they author did writing it.” “The read three times theory was that you should just plow through it first, nowt worrying about what you miss, then read again very carefully, making sure you understand everything, then read it once more quickly, to finally get the rhythm or pace of the book.” “I think this was just for novels.” “It’s a pretty big investment of time. I dunno.” I think Jessica mentioned “Ulysses.” “There’s one book that was maybe faster to write than to read.” “Maybe he just scribbled out a bunch of drunken nonsense really fast.” …(?) “I did see the move “Motorcycle Diaries.” “No“ “Al and Sheila don’t know these things. Be gentle with them.” “Hilarious…she didn’t get it.” The humor is too much for Al. He gets up to leave. “Thanks so much for coming.“
Jessica and Sheila now left. They didn’t understand why Al left. “You didn’t do anything wrong. That was just all that Al could stay, I think.” “I think not.” … “Boston Common.” “No, Big Pride moved to Govt. Center last year. (Much less mud!) I just remember what a muddy mess Pride was two years ago.” We stared out the window again. “They should have those binoculars that you put a quarter in.” … “We keep all the asteroid in my computer at work.” This reminded Jessica of a story I had told her before and we ended up going through it all here in the hospital room. “Ok, I finally figured it out “Nine thins in the Solar System” It’s a fun presentation i do with kids — Yes!” “So kids are quick to display their knowledge and they rattle off nine planet names, and I say, ‘Okay, planets. That’s one….” “And yes! All nine can be seen naked eye.” “All are physical ‘things’ with substance, all are in our Solar System.
It took a while, but we all puzzled out the list. Here it is:
- Sun
- Planets
- Moons
- Asteroids
- Comets
- Meteors
- Dust
- Solar Wind
- Sunlight
I lectured: “The last one that can really be counted as physical is solar radiation visible to us as sunlight. These ‘things’ are photons. Different than the sun itself because the sun stays there, but these stream away from the sun. Also different than the solar wind — that is hydrogen — protons streaming away from the Sun.”
… “You can reach down and feel a planet. 11 floors from here.” … “Usually about a 1/4 million miles away.” Explaining to Jessica, why I wrote that to Sheila: “She said she didn’t know where the Moon was.) … “fire is more descriptive than ‘explosion’” “Pumba got it right, pretty much.” “Lion King.” “Pumba was the warthog, always eating and therefore always farting. He, Timone, and Simba are lying on their backs looking up at the evening stars and Timone askes ‘what do you think they are?’ Pumba answers, ‘I think they’re giant balls of burning gas.’ After the hysterical laughter dies down, Simba explains that they are former Lion Kings…” … “But the elements weren’t cooked up in our sun — other suns, long ago.” … “Unless, of course, we live in a matrix where aliens just observe us to see how we puzzle out the fabricated observations they inject for us. Then, maybe nothing we believe really exists.”
I guess they left then. Nurse conversation now. My side of the conversation: “I need a new tube” “I’ll do that and a sponge bath next” “could I get more socks?” “There really wasn’t much mucus” “pain med before bed?” “not much now but i would probably like pain med later”
Nurse back around 11 pm. My side: “could I get that pain medicine now?” “also, could you adjust my finger sensor? The way it is, it’s holding my fingernail bent over ant it hurts a bit.”
She adjusted the sensor but it was after midnight before I got the pain medicine.
Yeah, my sense of taste, my mouth lining, my salivary glands, my skin, and my earlobes(!) are a wreck, but they start healing now. From the first week of treatments I was excited about the way the tumors visibly shrank. Now I’m so pleased that I learned to manage the side effects and that it’s all over.
