Mother and Sister Visit

My mother and sister flew in from Missouri Thursday and spent four days visiting me. The trip was a huge success and we all had a wonderful time with really very few problems.

Thursday

One of the problems was right at the start. I was going to meet them at the airport and that plan fell apart. Their plane from Kansas City had missed their connection in Philadelphia. In a relatively minor inconvenience for them, they got the flight just one hour later, but me without cell phone, had no way of knowing what was going on. I watched their flight number appear on the arrival and baggage claim screens, I watched people come and go, I didn’t see them of course. After 45 minutes all signs of their flight were gone and as I had no way of knowing if I had 15 minutes to wait (reality!) or if they were still in Kansas City, I left the airport. Now, me still not being the most punctual, I had arrived at the terminal just at the time their plane was due to arrive. I entertained the possibility that the plane was somehow rather early and that my mother and sister, not seeing me, had already hopped a cab to the hotel. I went to the hotel and asked if they had checked in. No, not yet. By then it was mid afternoon and I needed food. I’d had breakfast, but I was expecting them to get off the plane hungry and that we would all go out for lunch right away. A nice lunch of spinach pie and vegetable soup, one last check back at the hotel, and surprise, they had checked in!!!

Upstairs, kisses, hugs, airport stories. They had gifts for me! Most fun was a collection of scarves. Sharon (my sister) had offered to bring me some hand-me-downs from her closet, and I had told her no, that it was silly to haul stuff like that around the country. The scarves were a perfect use of that idea though. Easy for her to carry and I desparately needed them! One of the scarves is very special. It’s one my mother had bought on her recent vacation to Italy and is just beautiful. Other gifts were a scarf tying book, scented bath soaps, some photographs, some magazines, and a very special “hang in there” pin. My mother had a long career as an elementary school teacher and this pin was a gift from a parent of a particularly difficult child. It was cute.

While there was day left, it was time to make some use of it. Now, not having many resources with which to pamper my family, my plan for the weekend consisted mainly of showing them “my world” limited as it is by public transportation, for example. Greatly helping this was that their hotel was right across the street and just one block from the Lechemere Station. We walked to the station and bought seven day T passes for them. The T employee was frustrated, I think, that I was refusing his help with the machines, but I wasn’t about to let him deprive my mother and sister this local experience of navigating the screens on our new automated Charlie Ticket machines. I guided them through it, laughed with them when the machine timed out because we were taking too long to read the screens, and continued to ignore the exasperated T employee. Yes, there was a line behind us. But yes, there were a number of machines and the line moved quickly right around us. Nobody missed a train because I took a few minutes to share this experience with my family. We were headed for the 69 bus and Harvard Square though. It was a simple starting point for the visit. Kind of the center of my world, shops, places to eat, and a chance for me to run and gather some stuff I would need to spend the night with them. Of course on the bus ride over I pointed out and told about whatever I thought of interest. Once there, I pointed them in the general direction of the more interesting shops, and then left them to run and gather my stuff. Meeting them again in front of Au Bon Pain a bit later, it was dinner time.

This was the start of a weekend of picking mostly simple meals, between a few different considerations. One of course is to not spend too much money, another is finding food soft enough and mild enough that I can eat with my radiation damaged mouth, but the killer is the simple taste preferences of my still very Midwestern family. I offered them Indian or Chinese. They had never had Indian and didn’t want to face the problem of not knowing what to order. It had to be Chinese. Simple enough. We popped in Yenching and they felt at home. Sharon ordered cashew chicken, my mom bravely asked me what the Mandarin Eggplant would be like. Ha! “Mom, read the first paragraph of the menu. They say they pride themselves on the Mandarin style. You order this and you’re ordering their best.” She and I both love eggplant. We determined it wouldn’t be too spicy, and so that was her order. I picked seafood noodle soup, guaranteed to be very mild and very soft, and yes, we were all completely happy with our dinner. The sad part for me was watching them eat the crab rangoon. Mmm….hopefully just a week or two and my mouth will be healed and I can eat crunchy food again!

Friday

I had the alarm set for 5:45 am to get to my 7:00 radiation treatment, but was awake at 5:30 anyway. It was nice to have a little extra time to get ready and I got to Lechemere at 6:15 as planned, thinking 45 minutes would be plenty of time to get from there to the hospital. Of course since I hadn’t looked at the 69 schedule ahead of time, bus karma guaranteed that it had just left moments earlier, at 6:10. I bought an ice coffee from the station coffee stand, now that I was slowed down to taking the train instead. And 45 turned out to be plenty. Radiation, then Stacy’s for oatmeal, then back to the hotel.

The sightseeing plan for the day wasn’t much more than wandering the waterfront. I took them to Haymarket Station, pointed out the Haymarket itself, and then showed them the Holocaust Memorial. We wandered down just one side of Faneuil Hall. It wasn’t really our destination, as Sharon and Mom had been there before and we weren’t on a shopping expedition, just sightseeing. We did browse a few of the sidewalk vendors on the way, but didn’t go into any of the shops. From there, we wandered through Columbus Park where they liked this fountain in particular. “It has some name…what is it?” “Infinity pool.” I leaned a new word. It’s a pool with the water level at a rounded edge so there is no visible “container” for the water. Our path through the park was toward the lunch destination I had in mind, the Sail Loft. A little less obvious than a couple other restaurants there, a little more local flavor. I had chowder and baked potato. Sharon said her fish and chips were the best she had ever had. Now, I challenged her on that, but she said that no, she meant it! Hmm…I tried one of her pieces of fish. It was good, but not Boston’s best, I assured her. After lunch we strolled out on Long Wharf just to look out on the harbor and watch boats. I pointed out whatever I knew that we could see from there. I also had in mind checking harbor Island boat schedules. We’d gotten only about that far when the sky turned black and threatened to pour rain. Mom and Sharon looked at me with eyes wide. I just smiled and pointed out with a smile, “And here’s the Blue Line! Just how convenient is this city, hm?” We dodged the first of the rain by ducking in the Aquarium Station, but it was indeed pouring when we arrived at Lechemere. We waited, watched the rain let up, then pour four a while longer, then let up again. We didn’t hesitate this time and scurried across the street to the hotel.

At the hotel we sat around and talked for just a short while when Sharon yawned and said she was taking a nap, Mom was ready to join her but I saw the rain had stopped and said I was walking to the Twin City Plaza to browse shops while they slept. This was too tempting to Mom. “No, I change my mind, I want to go to the strip mall too.” And then Sharon, “well but I don’t want to be left out! I’ll go too.” Uh uh, Sharon, you started the nap thing. You’re taking a nap.

Mom and I went to the mall. It was fun just the two of us! I was having fun thinking of it as our first time mother-daughter shopping. We went in Marshall’s and browsed just the shoe department, then Sew-Fisticated, Dots, Sally Beauty, and Dollar Tree. I…know the experience was different for Mom, but she seemed to be enjoying it all anyway.

Returning to the hotel and rousing Sharon, the easy choice that everybody liked for dinner was the food court at the CambridgeSide Galleria. Hey, its vacation, right? Sharon and Mom got Italian. I got Chinese again. Now, all Americans know that after dinner at a mall, the choice for entertainment is a movie, right? Actually we’d already talked about it on the way over, reading a Wall•E billboard looming over the McGrath Highway. So, Green Line from there to the Boston Common AMC, and let’s see…. A show just started, so there’s a bit of a wait for the next one and……as we consider waiting, it sells out too. The next show is very late. None of us have any interest in any of the other movies. Hmph. How about a movie on the hotel TV? Yes. First though, how about a walk in the park? Huh? Yes, I absentmindedly led us into the wrong entrance at Boyleston, forcing us to walk up to Park Street … *sigh* … while I explained to them about some of the idiotic limitations of the MBTA’s new Charlie system.

The movie we picked at the hotel was Over Her Dead Body. It was cute, and watching from bed was just fine–actually really nice–for the end of a long day.

Saturday

With no radiation treatment to get up for, it was nice to sleep in a bit. Still, I’d done well at taking medicine at the right times overnight, had slept very well, and was awake well before Sharon and Mom. I went out for breakfast alone and found pancakes at a cafe just around the corner from the hotel. Mmm, drowned in enough butter and syrup, they went down pretty easily.

The tourist destination I picked for the day was the Mapparium at the Christian Science Plaza. I’d had the Mapparium on my list of places to visit on the recommendation of Kim (from Texas) and it was perfect for the day because it was quick and was right next door to one of our main destinations for the day, Dorothy’s Boutique. It was cool! Again, just a little bit off the beaten tourist path. Fun. Fun to see the “hall of ideas.” Fun to read a few little displays about Mary Baker Eddy, homeopathy, and so on. Of course the church and plaza are spectacular sights themselves. Interestingly, I thought, the giant reflecting pool there was our second infinity pool for the weekend, and here I had just learned the word.

Dorothy’s was on the list because Mom and Sharon had declared early that they wanted to take me wig shopping. (Oh my, was my wig really looking that bad? Horror.) Never mind, I hesitated for only the briefest instant before agreeing. Yes, it is getting worn, and yes, I was quite aware when I bought it that the style is a bit edgy. That’s why I bought it. I just didn’t plan to wear it every day at the time. So anyway, it had been fun but yes, I was ready for a change too. Dorothy’s is a fun place and is where I bought the two blonde wigs that I wore much of last year. They have costumes of all sorts, costume jewelry, makeup, dance wear, shoes, and wigs! Starting to try on wigs then, it was fascinating to me that Mom and Sharon both gravitated initially to a wig that was much like the very first wig I picked out for myself. We tried a number of different styles then, decided which one we liked best, but didn’t buy because the plan was to compare at Wig World. Mom did, however buy me a pair of shoes there. I know she wanted to do nice things like that for me, and they did have some practical every day shoes there for cheap.

Green line to Downtown Crossing and we were at Wig World, where I bought the black wig I have been wearing since the beginning of this year. Knowing now kind of what we all had in mind, we picked one that we all immediately loved. It was human hair, which I had come to really like, and they must have seen the difference as well. To be thorough, we tried a few other styles and colors, but there was no contest really, we were going to buy that first one. Now, the sales gimmick they have at Wig World is always buy one get one half off. They always say it is a special, but they always have the special. Anyway, it was irresistible to Mom and Sharon. There was a synthetic wig that we all liked, and it being much cheaper than the human hair wig, seemed too good to pass up. I didn’t argue long, and left with two new wigs. The second wig really is beautiful. It is black for consistency with my other black wigs I’ve been wearing, but also has some brown highlights. I think it will be good for when I want to dress up a little.

We move slowly and time flies and it was 2:00, I think, but everybody still liked the idea of Sarah’s for lunch. It was part of the theme of letting them see “my world.” Red line to Harvard and then the 72 bus to Sarah’s. Mom liked having a chance ride the electric trolley. After lunch was the one block walk down to my office where I did a couple of quick things. I changed into my new wig for one! Also dropped off a few things I didn’t want to drag back to the hotel, checked email, replenished my supplies of medicine, and printed a bus schedule for Sharon and I to get to Randolph Country Club later that evening. I had told her that some girls were meeting there and she liked the idea of going. Fatefully though, while I printed the schedule, I didn’t bother to read it then. More on that later.

Back at the hotel at the end of the afternoon, Sharon and Mom were exhausted and lied down for nap. My energy was fine though, so I walked down to the grocery store in search of pudding. We’d been talking about it and it sounded so good and like something I could eat. I wandered all over the store of course before I found the packs of pre-made pudding that don’t have to be refrigerated. Wandering through the produce department to see if there was anything I thought I could eat there, I found figs. They seemed a good bet for something I could eat so I picked them up too. Before going out for the evening, I just had to get freshened up a bit. I spent some time in the bathroom, then Sharon took a turn doing the same, and we were off to RCC expecting to be home late, sometime after midnight. On the train, I opened the bus schedule and read. I’d messed up. The Saturday buses run a bit infrequently and there was no way we were going to make connections to catch the last reasonable bus for us to catch and still have any time to spend at the club. RCC was off. Very sad, and I felt a little foolish for not having planned better.

*sigh* Plan B wasn’t so bad. It was to go someplace nice for dinner, an idea we had talked about before. My pick was Z Square, a relatively new place in Harvard Square, and wow, what a good pick that was. Sharon, midwest girl, had steak, and I had Salmon and a side order of mashed sweet potatoes. My Salmon was beautifully arranged on a bed of corn pudding and topped with grilled asparagus. Even with my mouth a mess, the flavors came through and I have to say, I haven’t had a meal so nice in a long time. I tried to thank Sharon as much as I dared, but really, really, I loved that dinner.

Besides dinner, I had to drag Sharon along for a couple more stops to get Medicine. I actually took her up to Stacy’s where I had some of my medicine. Stacy either wasn’t home or was asleep, so Sharon didn’t get to meet her, but she did get a quick glimpse of the place, and I gave her a quick look at my wardrobe. Second medicine stop was CVS, then we were back at the hotel, surprising Mom by being home so early. It wasn’t all that early though. It was bedtime for all of us and I’m sure we all slept hard.

Sunday

Our last day. Sharon and I were up first and went down to breakfast together. Me, always wanting to be ethical, I was planning on eating my figs and pudding, but it didn’t take too much urging from Sharon before I broke down and went through the complimentary breakfast line as if I were a paying hotel guest. I got french toast and again, it was was really good. Upstairs, Mom and Sharon got everything packed. Downstairs, they checked out at the front desk, checked bags to pick up later in the day, and the day was ours. …Except that I think it was close to noon by then. Anyway, their flight wasn’t until evening, and there was one thing left that I really really wanted them to see–Community Boating. The plan was to sit on the dock and watch boats and people. That’s all, but I just wanted them to see it.

Mom had missed breakfast and Sharon and I wanted her to have food ASAP. I walked us to the breakfast place where I had had pancakes before, but rats, it was closed on Sundays! Plan B, get something on the way to CBI. The coffee stand at Lechemere? Closed. CVS at Charles/MGH. What would we do without CVS? We all got snacks and drinks for the afternoon and walked across the bridge to one of my favorite worlds, the Charles. I stopped us for a bit on the far side of the bridge to look out over the river, then we went and did Community Boating. I talked, maybe too much? I don’t know. All about Community Boating and what I did there and what other things go on there. I pointed out all the different kinds of boats and talked all about them. And…I suppose they got to see where I was socially, which, I know, is a little bit strange. I didn’t introduce them to a single person. Only one person said hello to me–one of the crew for the Sunday racing which was going on that day.  He recognized me as one who had taken him out for instruction last year and helped him learn sail. I didn’t remember him at all but happily talked with him for a bit, hearing from him how he was now racing, and him leanring from me that the tracheostomy was related to my cancer diagnosis.  Anyway, I explained to Mom and Sharon that this was typical, that I take so many people out for instruction. Writing in my journal here, I kind of have to come clean and confess that that the truth isn’t quite like that. I didn’t, in fact, give instruction but a few times last year. It seems quite a coincidence that I ran into this guy that remembered me. Anyway, Sharon and Mom watched the clock until it seemed there was about the right amount of time to get some lunch, get bags from the hotel, and get to the Airport, we had seen all there was to see at Community Boating, and our little four day vacation was almost over. It was time to leave.

I assured them that there were lots of places nearby for lunch and walked them to King and I, the Thai restaurant that is our favorite after harbor trips, favorite for one reason among many that it is the very first restaurant you come to on Charles street, just right there by the T station. Oops, though. Thai food? What is it? Preposterous as Indian food to midwesterners. Ok, we keep walking. It’s a few blocks before the really good concentration of restaurants and the first place that got everybody’s approval was another old reliable, Sevens, with good inexpensive bar food. The place was pretty full, but there was a free table and we snagged it. Things should have gone well then, except that on this nice Sunday there was only one waitress working the whole floor, and only one person cooking. It took a long time to get food, and it seemed like even longer to get the check. The delay was pushing poor Mom over her limit of nervousness and at one point I had to point out to her that she was clutching a wad of cash and shaking it as her eyes frantically searched out into the bar for the waitress. The waitress, I pointed out, was scurrying to handle tables in order and had just brought the check to the table ahead of us. I’m sure Mom was worried about missing the flight, and in fairness, Sharon was expressing her desire as well to expedite things. Yes, we did get our check next. Red line, Green line, hotel, ask the desk to call a cab, 10 minute estimate for the cab, get the bags, wait outside. Sharon was relaxed enough with the remaining time, but Mom still couldn’t think clearly. While she wanted to get to the airport in time to catch the flight, she still wanted to take care of me. She had this idea that the taxi would have to drop me off at Harvard Square before taking me to the Airport. Mom, no. I have my T Pass and all the time in the world. I don’t need a taxi ride for no reason. It’s the wrong way. You’re not late now, but if you’re worried about such things, dropping me off first will lose you half an hour of time and cost you an extra 15 dollars–for no reason at all. Speaking of T passes–your T pass is still valid for another three days, and would get you to the airport probably 15 minutes behind the taxi and save you 30 dollars or so. *sigh* No, I didn’t really say all of that. I didn’t say a word about the nonsense of them taking the taxi over public transportation. I knew that they were in a hurry to get to the airport, that they were tired, and sensed that they were just done with public transportation. All I overruled was Mom’s nonsense of taking me back to Harvard Square. When the cab arrived, she explained to the driver that I needed to be dropped off “in Cambridge” first, and I quickly told him, no, I’m going to the airport too. “Same airline?” was all he wanted to know.

Airport, check bags and get boarding passes, one hour forty five minutes left before flight time. Well…in these days of state imposed terror, I know they wanted to be there two hours before flight time. Sorry…Sevens killed us. Anyway, with boarding passes in hand, Mom and Sharon were breathing easier and decided they could sit with me for 30 minutes or so before going though security. That was really nice and I really appreciated that last little bit of time to…I don’t know what…just reflect, make small talk and unwind a bit, and say goodbye in not so much of a rush.

We had several good conversations over the weekend where we talked about substantive stuff–my problems and stuff. A couple of conversations were the three of us, and then Sharon and I had a couple of deeper conversations alone. Mom’s having more trouble accepting me as Sonia, but she’s not rejecting me either. Conversation on our trip to the Twin City Plaza, for example, stayed relatively light, but the two of us still had fun together, still really enjoyed being together. It’s huge, and really wonderful.

Five rough days

Rough because I was feeling so bad, and thus not writing here. A problem I vastly underestimated was that I ran out of my prescription for Dexamethasone and didn’t take it Saturday or Sunday. Yes, I knew it was running out, all I had to do was leave a message for Dr. Lamb, but no, I never had the sense to do that, but just waited until Monday. Turns out that that’s a REALLY bad medication to stop like that. The other problem, the one so much more obvious to me, was that my cheek and lip lining, and the sides of my tongue were now completely gone and were one big raw open sore. Omg, I was thinking, I still have a week and a half of of treatments left. How will I survive?

Saturday was RI Pride. I shouldn’t be so lazy, but here’s the little wrap up I posted to TransSpace

Lindsey and I did RI Pride. I took the train down to meet her, we found a lovely sidewalk cafe for dinner, and we joined a couple of friends of hers to watch the parade together. It’s, um, not the Boston Parade, but something completely different. Night time, lighted floats, and overall more of a small-town feel as opposed to the big city production of the Boston Parade. We bought parade souvenirs, we caught freebies tossed from the floats, and had a gay old time. Lindsey’s friends headed on their way then, and Lindsey and I went to Alley Cat and then later to Dark Lady. Both places were cool. Live music at Alley Cat, the drag show at Dark Lady, and everywhere people having fun.

Afterwards, I stayed over at her place. She insisted on sleeping on the couch and having me sleep in her bed. Omg, I had no idea how nice that was going to be. I couldn’t help mentioning the next day how nice her bed was and she told me the story of how she travels for business so much and sleeps on nice beds in hotels and couldn’t see the sense in sleeping on worse at home.

The next morning was late and lazy. One last gift she gave me was a brand new wig. She’s recently grown her natural hair out very successfully and has no need for this wig now. I wore it home on the train! The whole trip was so nice. It was so nice to talk TS stuff with Lindsey, and just tell stories and get to know each other better.

The rest of Sunday? Hmm…don’t remember. Probably wimpered in misery mostly.

Monday I happened to show up for my radiation treatment 30 minutes early. This happened when it was pouring rain outside, I allocated time to take the bus, then when I walked out the door, the rain had completely stopped. I decided to hop on my bike instead while I had the chance, and so was there in no time, as usual. I walked in saying hello as usual, and the staff asking how I was as usual, and me confessing that I was in bad shape and was worried about getting through the week. This prompted a consultation with Dr. Lamb in this convenient time before my treatment instead of after. She looked at my mouth and said that no, mine was in about the worst condition she had seen, and without me asking, she volunteered to shift some days around in the treatment schedule to maybe give my mouth a chance to recover a little bit. Whew, what a relief. She explained the seriousness of stopping the dexamethasone, got me that prescription, we went over all the usual stuff, and just like last week, I left hugely relieved.

Monday and Tuesday this week were nights off for Stacy. Jessica is out of town, so I slept over both nights. Monday though, I was still crashing hard from going without my medication over the weekend, and was a total zombie for Stacy. She watched two movies. I sat by her, slumped on her shoulder, unconscious.

By Tuesday, the new prescription had kicked in and I was motivated at the last minute to go to Tiffany Club for the evening. A quick trip to Stacy’s to see if she wanted to come, but no, she had her evening planned. I was off by myself. I happened to take the same route as I did just last Tuesday, the 71 bus to Watertown Square, then the 70 into Waltham. Also, like last week, I couldn’t resist stopping in the Italian sub shop that’s right there. Last week I got a sandwich. Today, I’d already eaten, but thought a little snack would be nice. I bravely (with the condition of my mouth) decided on cookies and a Fresca. At the counter, the one visible employee was busy straightening and wiping the food prep table. “Just a minute,” he said. But then he kept working. He saw me waiting and repeated his encouragement for me to wait, but then this went on and then repeated again. I was starting to get annoyed at him putting me off, when someone else appeared. This I believe was the owner. He studied me curiously, but took my order. Still looking at me strangely, he starts, “I have to ask you something…” I’m thinking, oh please, do we have to do this? “Were you here last week?” he asked? “Why, yes, I think I was” “Did you leave a book here?” His eyes went to the side, where…I couldn’t believe it…there was a book I had lost the week before. “Oh my gosh, thank you!” I cried out. I thanked him again and again. “I kept it because I thought you might be back….” “Oh I thought I had left it at the next place I went to!” “No, you left it on the counter here.” Here I feared the worst behavior from people and instead recieved the best.

The book by the way, was a special book, that I don’t think I’ve told about here. “The Daring Book for Girls”, it was a gift from Federica, who works in the office next to mine. She bought it for me purely spontaneously one day, as a get well gift, and of course she had written in the front for me. I’d been having fun reading it, and thought it would be fun to show it off at Tiffany Club last week so I brought it along. I was sure that I set it down once I got to Tiffany Club, and then forgot to bring it home.

I have to blame this carelessness though, on medication. I know I had taken a full dose of my Oxycodone before leaving for Tiffany club, and that’s enough narcotic to make me pretty disoriented. I remember it took me a long time to get to there on the busses because I was making silly mistakes just trying to catch the 71 bus and let two buses get by before I caught one. No surprise I would loose something along the way. I remember at Tiffany club too, I pretty much just sat and listened, without enough wits about me to actually speak up and contribute to any conversation.

This week was different. I bubbled and talked and was myself, miserable as my mouth was feeling.

Today, Wednesday, at my radiation treatment, I got a nice surprise visit from one of the oncologists I hadn’t met yet. She was concerned because it came up during rounds that I reported hallucinations from Oxycodone and she thought this was unusual. She went over the problems I’d had with my mouth, with having my Dexamethasone run out over the weekend, and how little Oxycodone I had taken. When I told her I had hallucinations the night before with no Oxycodone whatsoever, that kind of clinched it for her. This was almost certainly not a problem with the Oxycodone. Most likely somehow a problem with feeling bad, staying awake too late at night and being too short on sleep, or perhaps even the Dexamethasone crash. I love this oncology group for the attention they’re paying to things. She recommended I go back to trying the Oxycodone as needed for pain and for for sleep both.

So, um, doctors orders. I’m way past my bed time and med time here. Tomorrow I’m up early to get my radiation treatment out of the way, then mid day I’m off to the airport to pick up my Mother and Sister for their four day visit.

T Party Friday

Friday I was trying a relaunch of my Sonia-owned t-girl social group. The night didn’t really go anywhere. Here’s the post-mortum.

Friday nights are known for Ashley and her Sisters of Boston. Ashley does *lots* of stuff right to get girls out and having fun every Friday night. Of course, she’s just one person, Sisters of Boston is what it is, and it’s not for everybody. Some people want or need something different. I would *love* to facilitate somehow, girls getting together in ways that work for them. With people they are comfortable with, in venues where they are comfortable, and so on. (Why I feel this urge, I don’t know…never mind.)

So last year at one point, I collected my ideas, scouted around on the web for a site, picked Yahoo’s upcoming.com, and invited a bunch of people I knew to join. Just a few did, like maybe one in ten of people I asked. Hmm, am I really that much of a non-friend to people? I think I am. My friendships are all so shallow.

Anyway, one of ideas for this group was that I wanted to encourage people to just pick activities that they would enjoy, rather than have the predetermined schedule of Sisters of Boston, or similar groups, for that matter. It didn’t work. Nobody participates a scrap online. Oh, I tried to set an example by announcing a couple of things that I was doing and inviting people to come, but I got one loyal friend to meet me for lunch in one case, and in another, got a much more loyal friend to steer a whole group to an evening event. But really, that was a venue that the group liked to go to anyway, and they went as themselves or as attendees of their previous event pretty much, I think, and not as attendees of my event.

There was a communication problem. Nobody says anything, but then, this stupid upcoming.com site has terrible communication facilities. It’s even hard for me to broadcast messages to my group. I blame things on upcoming.com and pick a new site. I’m inspired to do this when I get an invite from Daphne to join TransSpace, really just a user sub site of ning.com, which offers anyone to set up their own social networking site for free. It looks good and I jump in with both feet and set up a new group on this person’s transpeople-only social networking site. It goes better! I get some friends to join me and even post some interest in coming out to meet me on my first night. I’m optimistic. And then, nobody comes. Well, the truth is that I had Jessica and Stacy by my side, and also, that, I wasn’t a bit surprised that nobody else showed up.

Oh, I know, I shouldn’t sound so depressed. There, I just went and posted a happy wrap up post to TransSpace. Also posted there about RI Pride. That post coming up here soon….

Family

Click on my “Family” category at right and there’s not much there. I’m a bad family member. I’ve gone years at time without making contact with even my immediate family. Why? I probably don’t even know. I shouldn’t even try to guess. I’m hoping, though, to get better, and in fact, I’ve recently started to reestablish contact with some of my family. A couple of past journal entries have told of contacting my mother and my sister. I’ve been emailing and phoning them regularly now and it’s really great to be back in contact and starting to reestablish something like normal family relationships again. It’ll take time, I know, for lots of reasons. A huge boost for this will come next week when the two of them are coming to visit me here in Boston for a few days. We have no agenda except to visit and enjoy ourselves. I’ll show them my world, have them meet a few friends probably. All that matters is just seeing them. I’m really looking forward to this.

Also, my oldest son recently took the initiative to contact me on the internet. Wow, it was great to hear from him. He wrote a very touching letter, telling that he knew a few things about me, including that I was Sonia now, and loved me and wanted to reestablish contact. It was perfect. He also explained that he doesn’t have regular computer access, so I wrote him a letter on paper and sent it through the mail. He should have gotten it sometime in the last week or so. Can’t wait to hear back from him.

Thursday

Rough day.  After “Bowling for Columbine,”  the plan was shower and sleep.  It had been a long day, I’d missed my shower earlier in the day and was in fact still wearing the same smelly clothes from the day before.  But then looking in the mirror, there was–gross(!)–a bunch of black hairs tangled in my tracheostomy collar.  An inch or two long, they looked like the very short hairs from the underside of the back of my wig.

I didn’t anticipate the mystery that was about to start.  I didn’t know this was going to be the start of a long night.

There were lots of these hairs.  Too big of a mess to just pick them out, I removed the entire collar, temporarily tying the tracheostomy tube around my neck with the webbed string that usually holds the gauze.  A huge mess to clean.  What could I have done to make my wig fall apart like that?  And, what a mess, what was I going to do with it?  I would have to wash it and get rid of whatever was falling out.  First, to clean up my neck before replacing the tracheostomy collar.  I try wiping with a towel, rinsing with water, washing with soap.  More hairs are falling down?  What?  It’s not the wig, this is my hair, falling out of my head in great clumps!

Oh crap, its the radiation.  I tug at my hair in back and it comes out in handfuls.  At first.  Then a few hairs at a time, but without end.  Ok, so the mess has to all go.  Problems are:  1.  It’s late and I’m sleepy.  2.  I’d taken this medication that makes me disoriented and slow.  3.  I had one razor with me, a twin blade disposable that had already been used several times already.

Stubborn idiot that I am, I did what I had to do, used the one razor until it just fell apart.  I took way way too long doing this, and by the time it was done, and I had cleaned up the huge mess on the sink and floor, and been in and out of the shower too many times to count, most of the night was gone.  I got three hours of sleep and showed up at Stacy’s for breakfast, where I faced the next big side effect for the day.  The radiation is really inflaming my mouth now and oral care and eating is turning into an intense challenge.  Today for the first time, it took attention all day and lots of care with each meal.  Breakfast was just oatmeal, but it hurt.

At the hospital later, technicians were alarmed at first, but then decided that yes, the radiation does go that high on my head and that the hair loss is reasonable.  They offered to let me talk to a nurse but passed on that as I’m really just eager for my regular visit with Dr. Lamb on Monday.  I have to thank her so much for giving me the new prescriptions to survive this week, plus all the prescriptions and instructions from the week before.  She knew just what I would need.  Also at the hospital today, I got to meet with the social worker.  This is still a good thing for me with all the messes I’m in.  I didn’t need any specific referrals from her today, but I did tell her most of my story.  I liked her.  She asked what she could do for me and I said just see me again soon to check up on me.  I think I’ll see her next week.  One thing she offered for next week was to show me wigs!  She said she had a huge collection of wigs upstairs in her office, and, I think she’ll offer to give me one.  Hope so.  I’m not above taking one.  I was a little embarrassed when she brought this up because this day I happened to have my hair loose instead of pulled back as usual and it was kind of wild woolly mess.  It was easy to interpret her offer as “your hair looks really bad, you need help” but I think more properly I should take it as, “I have all these wigs because I work with cancer patients, I’m a social worker, and I know you’re struggling and might accept a gift.”

Late afternoon today was a discussion dinner at Transcend.  The discussion topic was why we “throw so much shade”  in the trans community.  The translation for one person there who complained they didn’t know street lingo was “why is there is so much animosity.”  I was eager to hear this discussion and had my own ideas, but in the end I failed and never offered what I was thinking.  My thoughts were just too different from the general course of discussion, and anyway, I’d taken my medication and was happy to just sit and let everything flow over me.  I still don’t know if I fit in there, but I have liked going.  Food was great this time.  The stipend is nice.  Best of all were some hand outs.  A CCA tote bag and tee shirt.  Eyes went up when I said I wanted size small.  I explained that I’m still young. 

Evening was cooking dinner with Stacy, watching the Czech move “Dasies,” and then sleeping with Stacy, as she had the night off.  She hadn’t slept in like 30 hours, I’d had my three hours of sleep the night before, so we crashed hard.

Tuesday, Wednesday

Tuesday was work then Tiffany Club.  I almost got to go to Natick, but didn’t quite hook up with Debbie in time for her to give me a ride.  No worries, Tiffany Club is always cool.  Loved talking with a couple of people in particular.  Ah…but I’m going to be vague here to complain that I walked away that night thinking how male a lot of them (us?  I could include myself) still are.  I was a little creeped out at a couple of points in the night.  Tiffany Club always thought provoking.  I’ll be back.

Wednesday was work then stir fry and a movie at Stacy’s.  I was a little worried because last time I cooked I made quite a taste disaster, attempting to do something to compensate for my loss of taste.  This time I stuck to stuff that appeared reasonable.  That is, what I thought would taste good if I could taste.  Jessica said it was delicious.  Actually it was a cooperative production with me and Stacy.  She cut veggies, thus picking proportions and such, and I cooked it up and seasoned it.  With rice of course, and a little couve on the side too.  Love that stuff.

Movie was “Bowling for Columbine,” which I’d never seen.  I was impressed.  For some reason the concept of Michael Moore’s documentaries has never appealed to me and I hadn’t seen any of them.  But gosh, it was powerful.

Monday

My radiation oncologist was so good with me yesterday for our weekly progress consultation. When I tried to apologize that I hadn’t done so well at following directions, she took the full responsibility for the condition of my mouth, saying, “oh no, I told you I was going to wreck your mouth with the radiation.” So, new prescriptions, new instructions, and I’m completely encouraged again. After leaving there, I went straight over to the dentist and scheduled the appointment like I was supposed to do last week. Went to CVS to drop off prescriptions, went to Hootenany while the pharmacist worked on getting my prescriptions. I was thinking of going to Ceremony again that night and wanted something dark to wear around my neck to cover all the white ugliness of the tracheostomy. Thought I might find something fun there at Hootenany, but ended up with just a plain black scarf. Pick up prescriptions back at CVS, along with various non-prescription items for all this radiation care, $55 total.  Back to Stacy’s to drop stuff off, eat, and get clothes to wear for the evening.

Stacy had made a big salad for me the night before. It sounded good, it tasted ok, but…it was shredding my mouth. My mouth is too tender now for fresh vegetables. Looks like I’m on the opposite diet of Stacy for a while. Hers is all raw, mine is now all cooked, or at least all things very very soft. A bag packed for the night, I headed to the Square to find something soft to eat. Ended up drawn in to Leo’s Diner, which advertises comfort food, and had a really nice omelet, at about 3:00 pm then.

That’s when the day started to fall apart.  It had started raining while I was eating and I was on my bicycle.  What can a girl do?  Gareth, bicyclist himself, was amused at me walking in to the office dripping wet, but fine, I drip dried, worked my late afternoon and started getting ready to go out.  Frustratingly, I seemed to be missing all the stuff I just got at CVS.  Rats, I was hurting for some of that medicine.  I’d just have to run home and get it.  Home, I didn’t see it.  Think, think…what could I have done with it?  The CVS bag had lots of stuff in it.  It was pretty big and should be easy to spot.  Looked everywhere, couldn’t find it.  Shoot.  I really had my bag that I took to work stuffed.  I must have packed it after all and just overlooked it.  Back to the office where.  Wrong.  Tore the place apart, it wasn’t there.  Think, think…could I have set in on the ground somewhere and absentmindedly walked away?  The bike rack?  The door while I was fishing out a key?  Stacy’s house?  The basement where I pumped up the tires earlier?  No idea.  Damn.  At the same time, I was watching weather radar, the window, and the clock.  Big storm.  I wasn’t going anywhere anyway.  Ceremony would go on without me this night.  Midnight or so, the storm was over, but I was still going crazy trying to figure out where the CVS stuff was.  Check at home again, this time I was determined to find it.  Never mind hat I’d already looked everywhere earlier, I looked again, harder.  I’m sure the racket woke up poor Kate trying to sleep in the next room.  Sorry, Kate, I was just possessed by then.  No joy.

Search resumed at 7:30 in the morning with Stacy to help me.  We talked all about it, looked everywhere.  Woke Kate up and asked her if she had seen it.  I tried to retell the whole story to Stacy to see if that would help me remember anything.  I tried to eliminate crazy possibilities.  Did the the CVS bag fall out of the larger tote bag at some point?  No, I wasn’t even carrying my tote bag.  Did I leave it on the counter at CVS?  Hootenany?  Trouble was…I couldn’t remember everything clearly.  Trouble was…I’d been a bit disoriented from some of my medications.  Crap, crap, crap.  Well, it’s only time and money, to go back and get the prescriptions written again, filled again, and paid for again.  I was resigned to doing that, and was fishing one thing out of a clothes box before I left, when…there was the bottle of moutwash from the CVS bag.  Wtf?  Why this one item?  Where was the bag?  Dig frantically through the clothes box, there it all it is down in the bottom.  Breathe.

Mystery solved, I’d tossed the bag on the box, the contents dumped, I later picked up the empty bag and tossed it without a thought.  That’s where the bag disappeared.  The CVS items disappeared down into the box, surely as I was rumanging through the box to pick clothes for the evening.  I just can’t believe I do stuff like this.

Sore Throat

Wow, I’m in pain this morning with a sore throat.  And I’m afraid this is all from lack of attention to oral hygiene last week as the doctor warned me.  The radiation treatments have now totally killed my sense of taste.  It’s awful, just awful.  The taste that is left as a phantom limb is salty, so clear fresh water tastes like seawater to me.  Food lacks all taste and the resulting tasteless textures are repulsive and difficult to swallow.  I still get hungry.  I still eat.  I go through the motions and eat stuff I know I would normally eat, stuff that is good for me, and treat myself to stuff that I know is comfort food.  Then I’m supposed to be taking better care of my mouth.  Problem, since I didn’t have the best oral hygiene to begin with, since the doctor wants me to get very rigorous now, and–apparently now–I’ve just lost the normal feedback cues of tasting a dirty mouth and spontaneously doing something like drinking, rinsing, or brushing, to even keep it as minimally clean as I was keeping it before.  So the doctor warned my mouth would get very acidic as a result of the radiation disrupting my salivary glands and the normal bacterial cycles in my mouth and that I should not only be on best behavior with toothbrush and floss, but also rinse with a salt and baking soda mix several times a day to counter this.  Those are the directions I didn’t follow so well last week and it caught up with me over the weekend.  This acid has swollen the whole inside of my mouth and this morning swallowing is really painful.  Last Monday the stern lecture was about skin care when I showed up with a weekend sunburn.  I know what’s coming today.