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.
Amanda and I had another girls day out last Thursday. At the end of the day she sent me home with a couple of books of hers, Helen Boyd’s “My Husband Betty” and “She’s Not The Man I Married.” I’m part way into MHB now, and of course it’s as good as I had heard. One point Helen makes early in the book is that cross dressers are no different from other men in that they often lack communication skills. I think I’m the worst person I know in this area.
