Near sleepless night

The doctor warned me that this steroid prescription might interfere with my sleep.  Two nights in a row now, it’s possible, hm?  Its’ also possible that I drink too much coffee, that I’m worried crazy about stuff, that sleeping at the office is so little fun that it seems just as good to sit up in front of the computer doing nothing as to sleep.

This will be a hodge-podge of a post.  I just wanted to stay back on top of documenting events.  Let me first add a little more detail to the oncologist visit on Wednesday.  He explained how the biopsy report indicated indolent marginal B-cell lymphoma.  He explained the physical restriction of the airway that the ENT saw visually and that CT scan showed was due to a large mass next to the trachea.  He told how the PET scan showed deep involvement of lymphoma throughout the neck area.  Not only the mass causing the problem, but in lymph nodes adjacent to the mass and on both sides of neck, and also in the lymph nodes in the groin area on both sides.  He explained that this alone makes classifies my cancer as stage 3.  Disturbingly though, was cancerous tissue that showed up inside the spine, possibly causing my problems with muscle spasms and numbness, and suggesting that the cancer might be even stage four.  He asked lots of questions about my senses and muscle control and I got the impression that he might have been surprised even that I has having so few symptoms.  Not taking my word for it, he had me walk a straight line to prove I could do it.

So, a number of things can continue in parallel.  No matter what, first treatment will be radiation to shrink the mass that is restricting my airway.  I see the radiation doctor on Monday to get measured for fixtures for aiming the radiation accurately, and then I believe daily treatments can start that week as well.  To get my body ready for the assault of the treatments, I have two prescriptions.  A steroid for controlling inflammation and a…something to help my liver more efficiently process all of the dead stuff that will be coming it’s way.  Also, we’ll get the results of the MRI next week, giving more detail than the PET scan, and possibly answering the question of whether the cancer is in bone marrow already, putting me at stage 4.

Next steps will be monitoring the results of the radiation treatment, and if MRI results are inconclusive about bone marrow, doing a biopsy to determine that.  If radiation is effective at reducing the mass and all else goes well, the tracheostomy can come out, possibly as early as a month.  Wow, that would lift my spirits.  The doctor explained that it would also be very desire able if my body didn’t have to deal with the tracheostomy at the same time it was dealing with chemotherapy, which will almost certainly follow radiation.  That’s about as far into the future we dare look for now.  What-if questions aren’t constructive.

I mentioned in a previous post that went to Harvard Square to get prescriptions filled.  Actually they only had the steroid.  I would have to return the next day for the liver booster.  So I popped the steroid, stayed up all night, and did the MRI in the morning.

I’d love to know more about how the MRI works.  <break, read Wikipedia, I’m happier now>  The darned MRI was at 530 in the morning, took about an hour, then I walked to Sarah’s for a huge breakfast of comfort food.

Worked all morning, took about an hour’s nap with my head on the desk, worked more, then left a little early in search of filling my antidpressant prescription.  Mentioning this prescription to several doctors now, the only reaction I’d gotten was a nod of approval, so I walked over to the Harvard Vanguard where it was originally prescribed.  The prescription had expired, my doctor wasn’t in, but I guess this is such a simple and common prescription that they had no problem just getting the duty med person to authorize it.  I left with Prozac in my purse for the first time in several months.  Just having it there made me happy.

It had been several hours now since breakfast and I needed food.  At Stacy’s, found her awake, and talked with her while i made some rice.  After rice, Stacy walked with me over to CVS to get my liver prescription and also do some window shopping along the way.  I’d agreed to have a big salad later, but after rice, and the sleepless night, and a productive day, I couldn’t hold my head up.  I crashed on their bed for a bit.  As always, it was noisy, but in addition, there was some terrible stench.  I buried my head under a sheet to hide from it, thought about how much protection that offered, how clean the sheet was, and slept lightly.  Got up just as Stacy was leaving for work.  I collected clean clothes to wear the next day and left too, to spend the night in the less disturbing conditions at my office.

This is where I ended up staying up almost the whole night for the second night in a row.  Finally went downstairs to shower around 4:00, showered slowly shaving all over, in bed around 5:00, one precious sleep cycle, and I was up at 6:30 to get out of the sleep room before the morning cleaning crew arrived.

A nice surprise today was getting email from Bliss that she had someone in my position of need a new apartment, and that we might cooperate to share a place.  I left work and went straight to her office to make the pleasant discovery that it was Stacy!  (not the Stacy with whom I’m currently staying)  We shared some our stories and agreed to look for a place together.  It could work.  Just could–both of us have some serious problems and could make life miserable for the other, but we do like each other, and just might make good roommates.  My job will be talking her into spending more money on rent than she had planned, by living closer to Cambridge rather than out in the sticks where she is now.  We’ll see.

Just how good could life be, if health, housing, and legal problems all go away over the summer, and I can get on with transition.

Plans for tonight include sleep.  Plans for tomorrow include dancing with Lace at RCC.

Phone message

Hi Sonia, It’s Al. Um… Just um, checking in. Um… Uh I’m con-concerned. You… I think we, um… In moving on Mon-uh-Monday. We uh, ah, yeah, I… <then whispering to himself, no longer talking to me> I’m concerned. <beep. he pressed a number on the phone. click. he hung up.>

This was Friday afternoon. A very typical Al communication.  Any mind readers out there, please feel free to look into Al’s mind and find out for me what this phone message was about.  He’s concerned?  Ok, but about what?  I have no idea.  Something related to when we moved some of stuff last Monday?  Ok, yes, we did that.  I remember.  Now what is the concern?  Really, I have no idea what he is thinking.  Must I make wild guesses?  No, I refuse.  Al lives like he does and speaks like he does for fear of being a burden to people.  In fact, he dumps a huge burden on people by insisting that they guess what he is thinking and what he wants to communicate.  Sorry, Al.  You gotta talk.

Sleepless Night

I should have gone to bed at 8pm. It’s 3am now. Maybe I could get an hour’s nap? I have to be at the hostpital at 530am for an MRI. Life drifts along, unreal to me.

Backing up a bit, Tuesday I promised Al I would get more stuff out of his place. Went and did that at lunch time.

Tuesday night went home about 7 or 730, I think. Found Stacy very tired, very sleepy on this, the first of two nights off for her. That meant she hadn’t slept during the day, and she was running on fumes to begin with. At some point though, She was moving around a little bit more, and said she had energy to…I don’t remember what she said, but I came back with a playful, “If you have energy for that, you have energy to go out tonight!” I had already started picking out clothes, and sure enough, she came around after a bit and started picking out clothes to go with me. We were both just about dressed when Jessica realized what was going on and said, “Oh! Are we going out? Well! I have to shower and shave…” It was after 11 before we left the house. I was very grumpy by then. I took the girls to Plow and Stars for Goth DJ night. It was just right for me. Walking distance from home, intriguing music, a chill bar. I drank…quite a bit.

We closed the place at 1am, walked home, plopped into bed and then…Stacy and I kind of kept each other up for a few hours. 4? 5? I don’t know. Tried to sleep until noon then, though I told Tim I would be in in the morning.

Good sleep is never possible with Jessica around though. She is identifying with being crazy these days, and that seems to release her to just shout out random things at all hours of day and night. Random syllables of exclamation, fuzzy-speak, sentence fragments. Random syllables are just shouted out into the night while everyone is sleeping. Fuzzy-speak is a language she and Stacy understand, but of which I can’t understand a single word. It is a mini language consisting of terms for lots of “cute” things–I think. I called Jessica on this once recently, asking her what she was saying. “Garfeed! Garfeed!” She said more and more loudly (you know, shouting always helps comprehension of a foreign language.) Now, to say that word properly, or any word in fuzzy-speak, you must say it totally nasalized, and you must say it with the lips formed in a goofy puckered smile because you think it is the cutest thing in world to say, and you must move the mouth very little. She calls it a cartoon voice, but I don’t think I’ve ever see whatever cartoon she is thinking of. I stared at her with a blank and unamused look. She dropped to her male (human) voice finally to say “Girlfriend. How many years have you been around us, and you don’t know that?” She couldn’t believe I hadn’t figured it out. But things said in English aren’t much easier to decipher. Her mind is packed with names of actors, movies, TV shows, cartoon characters, and quotes of all of these characters. Her speech then, consists of equal amounts of these names and relative pronouns. Neither tell me anything. Events in reality around her trigger her to say things with these names and pronouns, and whatever she says triggers her to say more things, all in names and pronouns. And hardly ever do I ever get anything meaningful out of anything she says. Stacy and Jessica both were commenting on how hung over I looked. I was grumpy. I didn’t feel the least bit hung over, I felt like I had had six hours of sleep interrupted many times by Jessica’s vocalizations, when what I really wanted was a solid eight hours of sleep.

At work just after noon. A little bit of food from the lunch truck. Work on the computer, and I was feeling better. A couple of phone calls then to get stuff ready for an afternoon appointment with an oncologist.

He spent lots of time with me and for the first time talked to me in great detail about my condition, the various test results, lymphoma, and what was next. Next, that would be the MRI that I have scheduled in a couple of hours. After that, probably radiation treatments, and probably starting next week, then maybe, just maybe, the tracheostomy can come out, before starting chemotherapy. He asked what home was like for me. He explained that some sort of social support can be important and I smiled and reassured him that I had lots of friends. Talk to the radiotherapy doctor, back to central registration for bloodwork paperwork and MRI registration. Over to the walk-in center for the bloodwork.

Walk to Harvard Square to get prescriptions filled.

At Stacy’s around 6:30, I think. I felt like I should stop in and say hello, but of course once there, I was invited to stay for salad. It was 8:30 before I left.

For the first time, I’m really starting to be afraid of this cancer. The doctor described what the PET scan showed and it’s not good. The cancer is in several places. I thought again of his question about what home was like and I realized he was asking if I had anyone to take care of me at home when I was being ravaged by the radiation and chemo. Nn. no, that’s different than having friends. No, doctor, it’s worse than not having anyone to take care of me at home, it’s that I don’t have a home.

ROOM WANTED

46 year old tranny looking for room to rent in a nice apartment, ideally very near Harvard Square. The room must be NICE because I have a tracheostomy and I need sanitary conditions to keep it from getting infected. I work full time but may be staying home for periods to recover from radiation and chemotherapy. Rent must be under $700 / month, (yes I know, nice places near Harvard start at about twice that) and you must not require any cash up front (first/last/security) because courts are taking all of my money for ongoing legal problems. This of course means I have no credit. Also, I need a flexible way out of any lease. While I do hope to be able to stay home and get very sick with my cancer, it’s possible that I will have to go back to jail. Otherwise, I am very fun, likable, and interesting. If you have a room for me, please leave me a description and contact information in the box below. (Comments left in the box immediately below go only to me and are not publicly visible.)

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Three day weekend

Mostly wasted.

Friday was a bit of an experience. I was moping around at the office, planning on staying in for the evening, when I read the latest comment in a thread on crossdressers.com about goth clubs. I should go, I thought, having a sudden change of heart about staying home. I knew it was goth night at TT the Bear’s place and I thought I should go just to hang out and observe. I went home (to Stacy’s, that is) put together an outfit around my leather pants, and did a little experiment with makeup. Decided that walking home alone wasn’t my best choice, that since I wasn’t planning on drinking much, I would be less of a target for sidewalk drunks on my bicycle. So then ten o’clock or so, was riding my bicycle down the street toward the club, through Harvard square, a tranny, in leather pants, with crazy goth makeup, and a big gauze bandage over my neck. Omg, I was thinking to myself, just how much of a freak show can one person be? In the door of the club, paused at the bouncer and he just stared at me, like, “what?” “Ten dollars,” he said. I relaxed, understanding that he was reacting my expression of apprehension, and realizing that his expression wasn’t saying, “what, you think I’m going to let you in?” but rather, “what, you want me to card you? just give me the cover charge.” Inside, I picked important stuff like money and ID out my purse, zipped it in my pants pockets, checked my hoodie, purse, and bicycle helmet at the coat check, and started a quick pass through the place. Walking toward the door, there was Rachel and Danielle! Brilliant! No, I had no idea they would be there, and in fact, their story was that they just kind of made plans at the last minute to go themselves. The club was fun, not remarkable, just fun. We all danced, drank, and checked out all the crazy looks that people had put together. We ran into Denis. I had actually seen him a couple of times and thought to myself, “that’s… that’s…” and finally I was thinking, “Sabrina!” when yes, he was talking to Rachel and Danielle, and now in context, I could finally recognize him. Danielle is a bit independent and left us a bit early. Rachel and I talked and danced a bit more and about 1am Rachel asked if I was done. “Yeah, I’m ready to go too.” I had seen what there was to see, had danced and drank, and was done. We got our stuff from the coat check and walked out into the night when it hit Rachel that Danielle had her car keys. Fuck. Alcohol plus non-standard routine equals fucked up mess. Our solution continued along the drunken theme… Cab to my office, look up phone numbers on computer, call Danielle. She was with a friend, almost to the friend’s house, which I happened to know is more than 30 minutes away. Agreed to turn around and come back and meet us at the club. Rachel and I walked from my office most of the way to Harvard Square to find a cab to take us back to Central Square. Found a cab, back in Central Square in less than 30 minutes of course. Waited on the street a bit. No Danielle. Went in Hi Fi and got pizza. Ate pizza staring out the window watching for them. No sign of them. Now we were getting worried and imagining all the disasters that could have befallen them. Finally we were out of ideas. We’d stood on the street for 45 minutes and didn’t know what to do. I had suggested a couple of times that we go to Rachel’s car. I didn’t know why. I didn’t have a plan. It was just something to do. I told Rachel she could stand on the street, but that I was going to walk over to her car. No, no, she would go, she insisted. She walked away and a few minutes later was honking at me, sitting in her car in traffic on the other side of the street. Danielle had dropped off the keys at the car rather than meeting us at the club as we agreed. There just weren’t words for how un fun and stupid the night had gotten. We stuffed my bike in the trunk and she drove me home. Then she was saying how she always had trouble navigating Harvard Square to find her way home. I thought…I’d had enough to drink that I had to tell her, “I’m sorry, I can’t help you.” She drove away. Heard from her the next day that she’d gotten home fine, just very late. We didn’t even need to say it. We both felt like idiots. We were. *sigh*

Saturday, sat around in front of the computer and wasted the day, then went to Charlie’s Kitchen. Other choices for the evening might have been RCC, where I knew a fun crowd would be; Machine, where Jessica and Debra were going; or Jacque’s, where I might have run into Jon. Charlie’s was an excellent destination for drinking, which was ok since socializing (talking, that is) is difficult for me with this bone in my throat.

Sunday, mostly the same routine, except I did catch Ethan’s internet radio broadcast in the evening. Also I ended up drinking a little more than the previous nights and thought that it might possibly be safer for me to have someone with me in my condition. I didn’t think I was close to throwing up, but just in case it came over me suddenly, I’d *really* rather not be alone to see how that would work with my trach tube. Went to Jessica’s. She was up playing on the computer of course. I started to brush off the bed, then came to my senses and got clean sheets out of the closet. Changed the bed under her, climbed in, she turned out the lights and cuddled up to me. She started to kiss me and I cautioned, “whoa, I’ve been drinking and might not taste so good.” She ignored my warning, then realized I was right and backed off. Of course that didn’t preclude other activities. *sigh* Don’t know what to think of myself. I’ve been so distant from her lately, and then what, I just hop in the sack.

Monday morning–ok, afternoon–I took a mirror and tweezers outside where the day was beautiful and did my face. Done with what I could do, decided to try my kite. One problem, the kite string was still at Al’s. Kite in my hand, train to Davis, I was going up the escalator when I heard someone calling “Al!” I looked up and sure enough, there he was, right in front of me. Now two people were calling “Al! Al!” They were arms distance away from him. Finally after enough shouting, he looked up and recognized them and began to talk to them. Also by this time, I had caught up to him and was walking with this group. Al looked across and looked right at my face. Again, and then a third time, but never registered an expression of recognizing me. I thought perhaps he didn’t want to reveal that he knew me to these other friends, so I was quiet and waited until he was just a couple feet away from me and I could say in a quiet voice so that only he could hear, “small world, hm?” He blinked and startled as he now recognized me. “Sonia!” And introduced me to the other two, his roommate and roommate’s partner. I guess I just can’t imagine what it must be like to be him. To shut out the world so strongly that you not only don’t notice acquaintances in a public setting, but that they have such a hard time breaking through your shell, just to say hello. Anyway, Al had a high priority of getting me to remove some more stuff from the apartment, so kite flying plans got shelved for the day. The two of us ended up making a couple of trips hand carrying stuff from his place to Stacy’s. He wanted to do a third trip but I was done.

And pretty much, that was my exciting Memorial Day weekend.

I’m here

Somewhere.  No one ever knows where.  I’m still doing a really bad job of writing.  Still blaming it on lack of Prozac.  So, ignoring for the moment all the recent days gone undocumented, here’s a little update on issues mentioned in my last post:

Tracheostomy.  It’s there.  It’s in pretty good shape.  I still don’t have my thoughts collected about it yet.  First of all, it’s great to be able to breathe.  Otherwise, it’s disconcerting in a number of ways.  It’s hideous.  You know, people look at faces.  When you look at mine, you see I’ve got a big white square of guaze.  Look closer and it’s hanging around my neck by a string.  Look closer and the string is hanging over some sort of medical looking collar.  Anything medically abnormal is repulsive.  People don’t look at my face for as long as they used to.  I can see it.  A glance and immediately the glance away.  It probably helps me pass.

It’s also an opening into my body where there’s not supposed to be one.  What is this opening like?  I call it a wound sometimes, but that’s not quite right.  Maybe it’s more like a piercing.  It’s disconcerting that it’s a path for infection.  It’s disconcerting that it’s an open port right into my lungs, without the gauntlet of my nose and mouth to screen out particles that aren’t so good for my lungs.  The air goes in cool and dry.  It’s not the best situation, but gosh it’s good to get that air in.

Biopsy.  Opinions of two doctors that read the slides support the surgeon’s preliminary dignosis of lymphoma.  The report was still full of hedge words.  More tests needed.  My primary care doctor was great with me as she read the report.  She immediately scheduled a PET scan for me and an appointment to discuss results with yet another doctor.  The PET scan was last Friday and was neat.  Discussion appointment is next week.

My primary care doctor was also good to caution me not to go straight to Google and start reading up on lymphoma.  I guess there are many kinds and we don’t know much at all yet about what mine is like.  I’ve had to pass the same caution along to a few of my friends who were quick to tell me what lymphoma is like.  These comments range everywhere from “oh yeah, that’s easily treatable” to “oh, I’m sorry.  I know that’s really bad…”

Ethan.  We both missed youth pride but he’s going to pick me up and take me to Northampton for Trans Pride.  Should be an amazing day, although I don’t know any more than what is on the Trans Pride web site.  I think I’m in for meeting lots of new people that day, and maybe making some new friends.

Sheila.  She was such a good friend when I was in the hospital and was there for me when I was discharged.  I should be better at returning friendship. :/

Sister and Mother.  Both have been wonderful.  I’m feeling really hopeful about finding a new closeness with them.

Home.  Still badly in need of a new place to call home.  Half of my stuff is still at Al’s, half is at Stacy’s.  Can’t stay at either place.  Been sleeping in the office the last several nights.  It’s been a solution for the moment, but not a good one.  Can’t do this for long.

Legal.  Survived my court date.  Have three months now to work with Kansas lawyer.

Visiting nurse.  Was really really good to me.  Need to write up all the ways she helped me.

That’s the update, but I have all these past days I want to document.  Soon, I hope…

Dazed

Dazed by just everything. I went back and added a few journal entries. Still a couple of weeks behind. In that time I did all of the following: Went in the hospital for a tracheostomy and biopsy. Was disrespected by various hospital workers for being trans. Missed Youth Pride without getting word to Ethan that I couldn’t attend. Missed the Harvard May Fair. (The only indication about length of stay I’d gotten before being hospitalized was that they tried to do what they could in 23 hours or less so that could categorize it as outpatient for insurance reasons. I was there five nights.) Wrote to my sister who hadn’t heard from me in years. In a most pathetic letter ever, told her I was trans, homeless, but in the hospital, but expecting to go to back to jail in a week where I expected to die of cancer. Talked to my mother who hadn’t been talking to me in a year or so. Ran into the problem that the hospital wouldn’t discharge me without a place to stay. (What about Stacy’s, you ask? Every surface, every object, in the house is covered with a dark sticky biofilm of filth. Most of the plumbing doesn’t work. Three of us share a bed where the everybody eats all meals, watches DVDs, plays computer, has sex parties, masturbates, and where the sheets are never changed. The place is packed solid with junk. I’ve heard the gentle term “hoarder” for this behavior. I’m telling you the entire apartment is a midden. There is no place to sit. Little space to stand. No place to set down a cup. I was living there before because I came out of jail homeless, penniless, possessionless, my apartment lost, all my money seized, all my pay seized, all my possessions seized. And Stacy offered to take me in for free.) No, I couldn’t go back to Stacy’s with a fresh tracheostomy that needed sanitary conditions, where I needed storage space for sterile supplies, where I needed to set up home care equipment, where I needed to rest. Hospital social worker has me at the YMCA now. Room rates are maybe half of what an inexpensive hotel would be. The little cash I had saved up is disappearing fast. Never mind orders for no strenuous exercise, I was back at work the day after I was discharged, and in addition, I’ve been running non stop these last five days. I have to eat, I have to wear clean clothes, I have to fill prescriptions and get supplies and stuff. I had to recover two banker’s boxes full of legal documents from Al’s place. Amazingly they fit in my suitcase and I hauled them on the train and bus to get them to my office. I’ve met twice with my visiting nurse who functions as social worker for me, getting me supplies and finding a lawyer for me for my court date next week. Talked to the lawyer on the phone. She didn’t strike me as particularly trans-knowledgeable, an she chewed me out severely a couple of times when she totally misinterpreted responses of mine as evasive but where in fact I had no such intent. I have this weekend to prepare materials for her. I have scores of other things on my todo list. My sister got a Kansas lawyer for me. (I need both.) Need to work with him. Nine days have gone by since the surgery and the doctor hasn’t told me the results of the biopsy. I called. He’s not there. He didn’t get back to me. Made an appointment with my primary care doctor but it’s for the day after my court date. I’ll miss that appointment if I’m in jail. I’m doing an ok job taking care of my trache so far, but of course not following anywhere near the care regimen they prescribe. Muscle spasms and finger numbness have returned. Can’t take ibuprofen because of bleeding risk. Acetaminophen doesn’t work as well. Visiting nurse says symptoms could be caused by my throat mass pressing on nerves. Sleeping uneasily between discomfort of plastic pipe sticking out my neck and muscle spasms. It’s the main Y. Commute to work is 45 min to an hour depending on waits for trains and buses.

My sister’s been out of town the last couple of days. Should be back tomorrow. Tried calling my mom a little while a go. She wasn’t home. Headed to Stacy’s now to get cash for either another day at the Y or else a cab ride to haul all my stuff that is there to somewhere else. Might sleep in my office on the floor this weekend if the Y is full. Probably mooch dinner off of Stacy again, definitely pick up a change of clothes to wear for tomorrow. Have to spend the weekend at the office anyway, digging through these legal documents.

Struggling, like that’s anything new for me

I’m a couple of weeks behind on journaling. Since then I’ve done some of the usual Sonia stuff, but also been in the hospital to get a tracheostomy, and started talking to my sister and my mother about stuff. Stuff like, that I have some medical problem, and that I have a court date coming up in a week where I know they’ll want to put me back in jail. Oh, and by the way Sis…since we talked last? I, um…turned into a girl.

Ok, last entry was May 1st, but I have some material from even a few days before that. I’ll go back and see what I can do to fill in some of the space.

Huh.  Sometime early in May I wrote this:  Much of the last week I’ve had a little cold. It’s no surprise, everybody around me has had one, not the flu, not pneumonia, just a little cold. For most people, a cough clears their throat and a little sinus drainage goes unnoticed. Not me. With my breathing restriction, an otherwise productive cough does nothing. The junk is still stuck in my throat, so I cough again, and again. It hasn’t been fun. In fact it’s been so draining that I’ve had trouble getting out of bed some mornings after a seemingly good eight hours of sleep. There. I’ll use that as my excuse for not writing. Who knows the whole truth?

Hospital day 4

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:

1. Sun
2. Planets
3. Moons
4. Asteroids
5. Comets
6. Meteors
7. Dust
8. Solar Wind
9. 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.