I sort of can't believe I haven't put any photos in my posts until now...  

Ah well.  

This won't be a long one, I just wanted to try it.

I'm working on my project for Journeys, and I just came across a bunch of photos from before my diagnosis, and after, and the transition photos.  

So, the photo with the orangutans on the tower at the zoo in Washington D.C. and the one with Sylvia and I in the ER were next to each other on the camera...  

It was about half an hour before my diagnosis, and we thought I had anemia.

The Words Flow On

-->Short note about writing and stuff except that now it's turned out to be a long note: I've just finished writing this, and it's pretty long, and I'm pretty tired, and I haven't really read it all back, though I've worked on it how I usually do, writing some, reading back a little, tweaking. I really enjoy doing that, that's why I do it. Not necessarily because I really want to get it perfect, more because well... I just like to do it, I think it's fun. But these have been different to me, of course, with my moods and stuff. They feel less planned (though I never really plan these posts), and even more just whatever comes out. Which I think is really cool, I love free-writing, not thinking about it, that sort of thing. But there are some things in here that I'd like to be coherent, about certain events and progress with healing, and stuff like that. But I'm tired, and I'm having a hard time gauging how coherent it really is. And I really really really have got to go to bed, because I have to get up and go to the hospital in ohhh, just 3 hours and 45 minutes. But also I'm all excited because I just wrote a long post about a lot of stuff that makes me even MORE excited, and I'd like to torture you all with it now, thankyouverymuch! For the precious few of you awake at this wonderful hour. And for those who will or will not (I have no idea how much crazy this is, and how much not crazy, like I said, I just can't tell right now) read it in it's scary lengthiness.
So please don't mind any confusing parts, strangely out of place parts, mis-informed parts (ooh, that one's harder, I'll have to read it over later and make sure it's all true, haha), befuddled parts, or blue zebra parts (oh, did I say " blue zebra?" I don't believe there are any blue zebra parts (besides this one), but maybe, you never know...). And any of those parts may or may not be there! I do not know. I will find out tomorrow. Or, oops, in a few hours. No, I think it'll be more than a few hours before I'm up and reading this thing. Or at least reading this thing. I'll be up, for a little while. Hopefully. Oh dear. I hope everything is ok, with this little sleep. In the hospital, I would get 4 hours or so per night for a handfull of nights, and did absolutely fine. Don't know if this'll be different...
Happy reading! Or not reading! Whichever you choose!
G'night...

-------

Here I am, third night in a row. Or morning, I should say. No, it's really night.

-->Right now my heart sounds kind of like a foot or something wrapped in cloth, stepping repeatedly on something hollow. It didn't last long, now it's silent again.<--

But the thing is, this time I'm wondering. Because I SHOULD be feeling less energy than usual. Of course, I can't complain about feeling good when I should be feeling not-so-good.

Anyway, tomorrow at 9 AM I'm going to clinic for a blood transfusion (packed red cells). Two units (don't know exactly how much that is, I'll find out later). My hematocrit is 21, they transfuse at 25 and lower (if it's 24-26 though they go based on how the patient is feeling). Just looking it up now, the first thing I found about "normal hematocrit" is something like 36-44 for women.
So yeah... And my neutrophils/ANC/something immune related (sorry I'm being so vague, it was just over the phone, and I'm a bit sleepy right now, and so on) were 400, "severe neutropenia" starts at 500. Yeah! 
And I still feel pretty good. Mostly mentally, I guess. Still interested in things, got stuff to say, even though I have a hard time getting up the stairs...

Stairs. Wonderful stairs. LOVE stairs. The thing about stairs is that they're pretty fun for a lot of different things. Waaaaay back when, when I was around 8 years old, and lived in IL (Champaign-Urbana), and would spend almost every day playing with my next door neighbor, Sadie, after she got home from school, we'd have a blast on the stairs. Sadie had carpeted stairs, and they were REALLY COMPLETELY CARPETED, with the under-carpet foam and everything (I'm assuming). Anyway, we thought it was really fun to slide down the stairs, going down in every way we could come up with. We'd go, of course, just sitting, bumping down each step, still in a sitting position. We'd also slide down on our backs, and fronts, head first, feet first, you name it... Not sure we managed going sideways while rolling... 
We'd get rug burn up the wazoo, but we'd still do it. It was literally hours of amusement.
Up and down, bounding up, sliding down. I don't think we ever even got hurt. Somehow. Besides the rug burns...
Stairs are also great for just sitting on. Different kinds of stairs. Front steps, sitting outside and watching people drive by and walk by. Attic stairs that are REALLY STEEP, and small, and you feel like you're just going to tumble down with every step. Basement steps, wooden and creaky, or concrete and cold. Back steps, sitting where it's less open, seeing the parts of houses that DON'T face the street, their other personality. Fire escape stairs, iron, black, cold, TINY, maybe even just a ladder coming from a second story window. Big, sweeping, marble stairs, in a mansion or something. Hard wood, simple, slightly creaky stairs, in an old-ish house. 
SO MANY KINDS OF STAIRS! I didn't think I'd just list different kinds of stairs, but it was fun.

Anyway, continuing on stairs (sorry!!!! If you really don't want to read about stairs you can skip over that part. Oh. Haha I guess it's too late for that, if you've been reading straight through. But at least you can stop now and go on to the next thing (or just stop altogether if you want!).... I brought the subject of stairs up because now that I have things like low hematocrits and such, I really appreciate what stairs are used for. Getting from one floor to another, or even just up the front steps and into the house. And of course, in a two-story house, my bedroom is up a decent sized flight of them (not in all two-story houses, but most, and this one). It's not really a big problem, or at least it hasn't been so far. I can usually get up them just fine, if a bit slower than I used to be. And it was only really the last few days recently that they've been noticeably worse.
It's only that as I go up them (and recently it's been quite slow, three or four steps at a time at best) I get out of breath (pretty fast!) and my heart rate goes up a lot. 
So tonight I stopped halfway up, just for a breather, and then continued up. Another time tonight, I sat at the top after making it up, and looked down the steps, and thought about stairs (heheh I keep switching around, using steps and stairs. I'm not really thinking of them differently, just randomly deciding to use one word or the other). So that's kind of where all of this stair-talk came from. =P

Wow, I just wrote a lot about stairs. Ok, glad to get that out, then!

Today.
Actually, wait. First, last night. I decided to take a bath, because they're nice, also because I needed one, and because I thought it would help me maybe get to sleep sooner, and easier. Well, first I had to decide where to take it. This house we're staying at (sorry, haven't talked about it much, we're staying with some friends, the Thurstons (really cool, nice, awesome people!) just until we move into our place, wherever that is (close, but haven't quite picked yet/gotten it to work)) has two bathtubs, one down in the basement, and one upstairs just across the hall. The basement one seems pretty nice, it's a finished basement. And I was thinking that it would be good to use that one, so I didn't hold up the one where people brush their teeth and use the loo. 
But after talking to Sally (the mother of the kids), I found out that it really wouldn't be a problem to use the upstairs one, there was yet another bathroom that they could use. And we thought it would be a LOT better for me to be upstairs where everyone else was, in case I needed anything. And I even thought, after taking a bath I tend to feel both super-relaxed and also pretty weak because of the hot water soak, and TWO flights of stairs would probably be a bad idea.
And oohhhhmygoodness was I right. I really like a good hot bath, and had had kind of luke warm ones in the past that were pretty disappointing, so I poured it hot. Way too hot, actually, at first. I put some cold water in, since I did want to get to sleep soonish, and it would have taken forever for me to get in all the way (and it probably was better off being more bearable anyway =P ).
So it was really nice for a bit. And I like lavender a lot, and I have this lavender soap/"foam bath" that's in liquid form. I forgot to put it in before I started pouring the bath, so there weren't any bubbles (I didn't put it in at all), but it was a good smelling soap. =D
Anyway, I started getting that feeling where you've been in the bath too long, or a hot tub, or hot spring, and you start feeling a bit fainter than usual, and super-weak, and just SO warm (or at least I get that feeling...). And I just had to get out. Which of course was pretty hard, because of the combined effect of my low counts (which I didn't know about at the time) and the really hot water.
But I managed to be sitting on the edge of the tub with my feet still in the water. Sat there for a while. Well, I don't know how long it was, maybe 5 or 10 minutes. A bit harder to breathe, because of all the steam in there, and my tiredness. But I didn't feel like getting up to open the door a crack. I really wanted cold air though. But I made do with cold water, splashing it around a bit. And sitting there, I was SO HAPPY that I was upstairs. I don't know if I would have made it up two steps, let alone two flights. I seriously think I might have passed out. 
I was still covered in soap, so I knew I'd have to get back in and finish. But I waited until I felt better, at least enough to be back in the water (which I cooled down some quickly with cold water). Got out as soon as I could, dried off, and AHHHHHHH FRESH AIR COLD AIR BREATHE.
Kind of lurched into our room and onto my bed. Lay there for a good ten minutes, letting my heart get back to normal. And then it was normal, and I got ready for bed, couldn't sleep (yes, I tried. And I was thinking so much, and hated the idea of forgetting the ideas I was getting), and started typing.

This morning I got up around 10:00, maybe 10:30. Got downstairs and felt pretty weak. Margaret (the girl here) was there, looking like she'd woken up recently. I felt something was off, couldn't really tell what, and it was just a vague feeling. Then it was explained that Margaret wasn't at school because she had fainted this morning. I knew she had been up late last night with homework, and had finally put it away to do in the morning. But anyway, I don't know exactly how it was, but something like she got really dizzy, after someone had said something about fainting. Kind of like the power of suggestion. Anyway, then a bit later she had just fainted. And it was a bit uncanny, because even though I was feeling weak, and a bit off as well, the feeling was not that strong. But then a little later I started feeling a bit more dizzy, and a lotmore faint, and weak, and shaky, and I went straight to lay down on the couch. Where Margaret had been laying earlier. With basically the same problem. Welllll, apparently fainting/feeling faint is contagious, then! =P
Anyway, she was appearing to be feeling better, and she said she had gotten some more sleep afterwards. 

I remembered that Jessie, the visiting nurse, was going to be coming at 11:45 for a blood draw/check up. When she got there I was still eating oatmeal with brown sugar (lots of brown sugar, yum) while sitting on the couch. I told her about my ridiculous time talking a lot and stuff, and how great I've been feeling. We got a kick out of a bunch of different things. I really like her a lot.
My blood pressure was something like 88 over 45. Low, for me. So yeah, I hadn't really thought about what it might be, except maybe a bit about during my bath last night.
She accessed my port, drew blood, and checked my wound from the port-removal site on the other side. It was looking a lot better than the last few times we've seen it (it was awful a few weeks ago, and hurt like never before last time we changed the dressing). A LOT better. And when she cleaned it, it hardly hurt AT ALL. I was really surprised. 

Last time we looked at it, it was with the wound care people and I was in clinic. 
The wound care people.
Oh my goodness. Or even better, by the drawstrings of my wonderful pineapple pajamas, the wound care people were a HOOT.
Here's what happened. 
On Friday, I had to go in to clinic (usually my clinic day is Wednesday) to see the "wound care lady" (Beth). But then I was feeling pretty off, it was the day before I got the hyper mood, and we decided to get my blood drawn to see if I needed a transfusion (ohh, I had forgotten about all of this amidst my happiness...). And we were really close to being late, so mom dropped me off at the door and continued on to find a spot in the parking garage (oh the lovely parking garage). And I was feeling a bit off, as I said, so I kind of ambled up to clinic, after stopping at the hand sanitizer/mask/glove/cleanliness station to grab a mask and some sanitary goop. Continued to amble over after getting off the elevator at the 6th floor. I was about to sit down on one of the benches lining the wall, to rest and maybe just wait for mom, because they probably wouldn't let me really go in without her because I'm not 18 yet (I don't know, I haven't tried, but we did try once to leave me there once I was in, when mom had to get to something. She had to figure something else out though, because they couldn't let her leave.) But then I saw up ahead that Beth was there, so I kept going. She was in the waiting area, and I was right on time. But we decided to wait for mom, so we sat in some chairs (of which waiting areas have PLENTY, of course). With her was a shortish woman with kind of poofy black hair and possibly glasses (I kind of picture her with glasses, but I don't remember if she actually had them or not). She was introduced, either by her or Beth, as Beth's boss/head of department. And ohhhh, I can NOT remember her name. *Sigh* I've noticed that I've been a bit worse with names than usual... Oh well.
Anyway, we talked for a bit, about stuff, can't remember what, and then she said something like, "I bet you're wondering why I'm here." Or, "I bet you don't know why I'm here." Anyway, it actually hadn't occured to me to wonder at all, which seems a little odd now, but oh well.
She said she was there because she'd heard from Beth how nice we were, and wanted to come meet some nice people. Awwwwwww, that was sweet of her!
Just then mom showed up, and we all went in. 
The wound care people don't usually come to clinic, though it was the second time for Beth, because she'd come to check mine a while back. We were just going to use a room, Beth had asked if she could get one real quick, just for checking my wound. There were a few open, though, and it didn't seem too busy.
Went straight back, into one of the semi-central ones (a few doors off from being in front of the nurses station). One that just had a curtain, no sliding glass door (there are a few with doors, they're nicer since the doors block a good amount of the sound). 
Anyway. Beth's boss was really lively, quite funny, and a bit strange. In a good kind of way.
We took the dressing off of my wound. I'm repeating their descriptions, mostly, since it's an awkward angle for me. I can just barely see it. It's on the right side of my chest, about an inch below my collar bone. Anyway, it looked pretty shiny, wet, and a normal color of reddish, with a bit of blood. The blood isn't necessarily bad, but it's not always there, and it's not great either, or so it seems. So the black-haired woman got a syringe of saline and some gauze, and got the gauze wet with it, and held it for Beth as Beth did her thing. "Her thing" being looking at it, and talking, and pointing at parts, and sometimes measuring it, and prodding it, and answering our questions, and hearing about how it has been doing (she doesn't see it that often). She took the wet gauze and cleaned the wound. Usually that hurts a bit, stings some, but it has never been truly painful. Until then. And ohhhh wow it was SO painful. Like I said, it's never been like that. I think that may have been the most painful thing that's happened to me so far. But at least it was short, only a few swabs. And it's just the swabbing that hurt that much. The rest of the time it was just definitely there but not too bad.
And I was SO THANKFUL that we don't have to stuff it with that "Aquacell Ag" stuff anymore (I think I wrote about it a while back, it was this silver impregnated felt-like stuff that had to go inside the wound when the wound was still a hole). I don't know if I could have taken that, if it hurt so bad just to clean it (I think she was swabbing it pretty gently, though I couldn't tell how much pressure there was through how it felt).
It's not a hole anymore! It filled in from the bottom up (it even had an overhang, which is gone now), exactly how it should have, and now it's just a big indent that's not quite healed.
Really not healed, at that point.
She put something new on it for a dressing. We'd been using this stuff called Allevyn, which is an adhesive bandage thing with a special absorbent pad to soak up any moisture, and it's got special "breathing" capabilities, and is pretty nice (about $4 per bandage, or so Jessie says, but it's taken care of by them). More recently we've been cutting them though, because the ones we got were pretty big. 5 inches across, square shaped. A while ago I needed them that big because I had two holes to cover. But the other hole, the much smaller one, has been completely healed for a while now. But we still have more 5 inch ones.
Anyway, we cut them into pieces that fit just over the wound and a bit around (usually about 2 inches by 1 inch) and then use "Hypafix" tape to tape the piece down, since we cut off the sticky on the Allevyn. It's a set-up that's worked for a few weeks now. And what goes under the Allevyn used to be Aquacell Ag, but a few weeks before this episode that I'm writing about Beth had given us a little tube of gel with silver in it, that's supposed to be good for stuff like this. That was when it looked really really good, and even had a bit of skin-like stuff over it, and we didn't need to use the Aquacell. She rolled it on, and then put the Allevyn over it. And ohhh wow, the next time we saw the wound, about a week later, it looked a lot worse. It was at home, mom was doing the weekly dressing change (it had gotten to weekly, at the very beginning it was every few days). I think it was actually a bit more than a week, I don't remember why that was. Anyway, we weren't too worried, especially since it had looked so good the last time. But after we looked at it, it was just yuck. It was really goopy (maybe the gel, but for some reason not-right looking), and weird, and painful, and we called someone to ask about it, I guess.... It wasn't the first time mom's done the change, she does it sometimes when that's the easiest thing to do, and had when it needed a lot more maintenance.
Anyway, it really looked like the silver gel had messed it up. I don't know if that was it at all, maybe it was my counts, or something else. But we sure weren't going to put that stuff on again.
We cut a little piece of Aquacell and lay it on top of the wound, and put Allevyn over that, I think after calling Jessie, who's seen it a lot more often than Beth has.

ANYWAY, I was going to write about the black-haired woman, just because she gave me such a good laugh after we'd gotten the wound all covered with this fancy new Allevyn with silver in the Allevyn itself. 
She had picked up the half-used syringe of saline again, and was pointing it at things like she was going to squirt it at something. Or someone. She started peeking out the curtain, and then brought it back over to the sink that was in the room. Pointed it at the sink from about two feet away and squirted it in. But it kind of missed, and got all over the counter too. She said kind of quietly, but amusedly, and in this strangely funny voice (can't quite pinpoint the tone she used, why it was so ridiculously funny), "I was going to squirt it at the first person who walked by." Oh, actually, I think it was right before she squirted it at the sink/counter. Anyway. I was laughing so hard, so so hard, it just made my day. Which really needed making, at that point.

It occurs to me that these posts have been really long, and maybe kind of daunting in their longness, and then there's been me talking about the flow of words, which might make it even more daunting. I don't know, obviously for me it's not that daunting, right now at least, but maybe I should try breaking them up into several posts, so no one has to feel like there's this incredibly long post from Nadine that might have a smidgen of interest in it but it's lost among all of the stuff. And I could also try maybe for shorter sentences sometimes. ;P
Opinions? Will I get any, if they keep up being this long, because no one has time to make it all the way to the bottom, where I'm talking about longness and asking for opinions?
Maybe I'm just being silly! Like THAT never happens. Heheh, these last few days have been a whole huge silly-fest.
But really, I'd love to hear opinions about length and breaking it up and stuff like that.
You all always seem to have wonderful stuff to say, whether it's cheering me on or joking about fish in IV bags or reminiscing about cucumbers and salad and henna and yeah... I don't know if I've really said much about that. Thank you! 

Thank you so so so much, it means the WORLD to me. And a lot of the time that is what's pulling me through.

Typing the Flow

So, I've gotta take advantage of this while it lasts. I've got a ton of random stuff flowing out of me it seems. (Ohhh goodness, I just meant words, sorry. Nothing else. :| )
First, I occasionally take Fenergan for nausea (not very often, and in a small dose). And I took one tablet (don't remember right now how much that is) two days in a row last week. I dunno if it could still be affecting me, but anyway, maybe that's where this mood came from... Strange stuff.
But anyway.
Today I was here by myself for a while. Until around 3. Anyway, the night before I had been thinking of all the stuff I could get done today. Lots of practicing, maybe some tune writing, and who knows what. All sorts of stuff. 
I woke up around 8. Noooo, not just spontaneously popping up and going, "Ooooh, up early, yay, bounce bounce." Mom woke me for something before she left for the day.
And I couldn't get back to sleep, so I got up. 
Anyway, I hadn't really spent much time on Facebook for a while, especially last week. So I did that for a bit, and of course we know what happens when available time occurs and Facebook is checked for a "brief update" (sometimes even when available time doesn't occur, though this time there was plenty).

I got to talk to Sylvia though! First time since she'd moved to UW (University of Waterloo, Ontario). That was wonderful, catching up a lot.

I had salad for lunch. I was GOING to just have some salad before eating whatever I decided to eat for lunch, but I ended up having three helpings of salad, and then for some reason I didn't feel like having anything else. I had expected to eat a lot more, since my appetite has been pretty good lately, but I just didn't. (And now I'm looking at that sentence and thinking about tenses, and how I switched back and forth... And I'm trying to decide if that bothers me, or if I think it's kind of cool (even if it's wrong), or if it's even wrong at all.
So, it turned out that my mom was awake, she couldn't sleep either, so I asked. And we decided we like it.
Anyway, it's stuff like that, sidetracks and curiousness, that I like. And it's something to talk about, so I end up talking about it. 

At around 3 mom got back, and then we left right away to go look at a few places. Turns out the one we were going to see first didn't work out, and we ended up with some time before the next appointment. Kara called while we were driving, and I picked up, and as I've mentioned so many times, I was REALLY TALKATIVE. So we talked for a while (I did some not-talking too!), it was really good to catch up.

So, the thing is, I'm really worried about if I'm obnoxious. This totally has potential to be really obnoxious. It's NOT that I just want to go on and on and on and on about everything and not let anyone get a word in edgewise. It's that I have things to say, and I'm generally pretty excited about them, but I'm also excited about what other people have to say, and listening to them.
Also, I feel like I'm thinking pretty clearly. But wouldn't it be way wacky if to other people I was all chaosy and confused and stuff? (Chaosy. Spell check definitely doesn't like it, but I kinda do. =D Ohhh, heh, it wants to change it to "choosy". Well, then. Really. No, I really meant chaosy.)

I met a turtle today. It was a very small turtle, and a beautiful one. This turtle was in the place we looked at. 

The place we looked at was a small-house-with-a-big-yard-near-the-lake. There's also a cute-little-house-with-a-big-yard-near-the-lake, that's the "Blue House" that I mentioned in a previous post. But this one we saw today was just a small-house-with-a-big-yard-near-the-lake (not really that cute).
Anyway, it's a good size for us, cozy and small (but you already knew THAT (the small part)).
The landlord showed it to us, and the tenants were there too. 
Anyway, the girl (a bit younger than me, not much), after we had been talking for a while, showed me her pet turtle. Introduced me, I should say. However, I can't remember it's name (or gender). I suppose I should be a lot better about remembering that vital information next time I meet one. It WAS a very brief meeting, but that's no excuse. :\
But I DO remember that this turtle was rather small (I'd say a little smaller than the size of two-and-a-half ping-pong balls, though not quite the shape). And very cute. And beautiful too. So I've got that info on looks here, but not much on behavior. It looked at me in a turtleish way and that's about it. Oh, the girl said it wouldn't get any bigger. I guess it's a small turtle for life.

At around 9:30 PM I started practicing flute. And played for an hour and a half. And just worked with tone and some technique (mostly tone though, that's the biggest thing I noticed), and a little bit of the Dutilleux. 
Things felt shaky, unstable, uncomfortable, weird, tentative, strange, not-quite-right, resistant, dry, and finicky. This was not, however, how it was the whole time. 
It changed frequently between being pretty solid and being unsettled.
Anyway, by around 11 I felt a lot better with how my flute felt in my hands, and that was fun.

And now I'm sufficiently tired out, and I bet I'll be able to sleep!

This Kind of Mood

I feel... Kind of hyper, I guess... A bit chatty (you've been warned). Bouncy, yet stationary. I feel good.

Two days ago: Really. Lousy. Before that? It was basically a week of icky. Not enough ick to keep me home, but plenty to keep me company wherever I went. Words didn't come easy. I felt like I was having a hard time holding a conversation, concentrating, thinking, talking, and creating. It was pretty daunting. I wondered if I'd ever get any of it back. It didn't help that I had that super-saliva problem again (did I mention it before? It was like something inside me was going, "Hey! We can produce saliva! Ok, so if we can produce saliva, we should! A lot! And we'll just keep doing that, because it's fun!". You get the idea. It was really annoying. And the more I swallowed, the more my stomach was unhappy, and spitting got old after a while (especially because I had to haul around a bucket). So I got a Scopolamine patch, a little sticky dot that goes behind one of my ears. It works beautifully. But a few days ago it kind of stopped working for a little while.

Anyway. I had chemo two weeks ago come Wednesday. And felt fine for a bit afterwards. 
I can't remember when I started feeling the yuck. 

My feet! They were huge. All swollen and funny looking. I guess fluids shift, things like that. But man, they were impressive for a while. 

So I'd thought we had found an apartment, but it turns out that one had too much iffyness. For one thing, it was a second floor apartment, and we realized that having a flight of stairs between me and the apt. every time I got home might not be the best thing ever. It wouldn't have been a huge issue, but since we're only going to be there during my treatment, and I tend to have a harder time with long flights of stairs during treatment... Anyway, it also didn't feel quite right to either me or my mom, we decided against it.
Next hopeful is a cute little house somewhere near the lake. It has blue carpet, so we call it the "blue house", even though the rest of it isn't blue (in fact, there isn't even very much blue carpet, but somehow it stuck). =D I'd be able to paint that one too.

Today (Sunday... I have fun thinking about whether I should call it "today" or "yesterday", since technically it's Monday. It might be less confusing for you if I call Sunday "yesterday", but I still think of it as "today", and I'd rather confuse you than me. =P ). 
Right, back on my train of thought... Today was the Irish festival. Mom was accompanying the Kanack School fiddlers for their performance. And at the last minute I joined them too. It was fun. We played for ohh, maybe an hour. Standing and playing that long was interesting for me. At first (at the morning rehearsal) I didn't think I'd be able to. But then I kind of.... did. Yeah. Anyway, it was good to play with a group. I also did a "solo" thing with mom (short, just Frank's Reel two times through), like some of the others were doing.
I love being around fiddlers. And I love standing in a group of fiddlers, playing my flute, pretending to "be a fiddle". It's fun, 'cause my flute is very shiny, narrow, a bit pointy, and round, and fiddles are... not (though I guess the bows are pretty pointy).

After we were done I sat on the dirt and watched the Irish dancers (they were dancing on a dance floor, which was in front of the stage. The rest was hard, packed dirt). I used to take Irish dance, way back when. Just for a year or two... But I'd forgotten most of it. And I remembered it all, watching them. Realized that it's going to be a while before I can do anything remotely as bouncy as that. 
The hair is incredible! It's SOOO curly, and yes: Bouncy. And fun to watch. And as I was watching the shoes in the air and the lines of girls (mostly girls, one or two guys in some of the groups) bouncing all over the place (heh, no, they were pretty coordinated), I was imagining them without any hair at all, what that would be like. Because the hair seemed like a huge part of it. I couldn't decide if they were wigs or not. I guess you can curl hair that tight... When I did the dancing I tried, but it didn't come out too good. 

The festival was entirely under a tent. A really really really big tent. Like a circus tent, I suppose. There were some vendors, food and other stuff. I love looking at festival clothes. Cool skirts and dresses to admire. But I've already got my share, so I just looked. 
But especially I like looking at the metal jewelry and such. 

We stayed for a while, listened to the music, and sampled: "greens and beans". I was wandering past the food vendors, and saw that on one of the big menu boards. It was basically the only thing I could see that wasn't meat or fried or sweet (none of which I felt like having (except I was pretty tempted by some french fries, which mom and I would eat occasionally back when I was in the hospital, enjoying their wonderful blatant unhealthyness).
So I asked the guy sitting behind the counter (the one reaaaaally long counter that all the food booths were behind... It was kind of strange.) if they were "greens and beans" or "green beans". I figured it was pretty obvious that they were greens with beans, but I felt like randomly asking. So I did. And then he tried to describe what the greens were (some sort of green leaf (can't remember what he called it) that is bitter, except not bitter when cooked. Kale maybe. But I didn't recognize the name. Anyway, he tried to describe it some more, and then just said, "it's an Italian thing, it's good." 
So I tried to give him 5 dollars, but he said I had to get tickets, and he pointed. He'd already given me the bowl full of greens and beans, so I just left it there and went to get tickets. They were one for one, non-refundable. So you trade money for tickets and then go get food, and end up with say, two extra tickets that you can't sell back. But I knew how many I needed.

Annnnyway, the greens and beans were pretty good. For a while. (They were still good, but I felt like they were just the kind of thing that would upset my finicky stomach.) I made it through a bit less than half the bowl. Mom seemed happy to have the rest, though. She also got some potatoes (I'd missed those somehow). 

Alice (the director of the Kanack school, wonderful woman) passed by on her way out, and gave us two and a half extra tickets that she hadn't used. We hung on to them for a while but didn't use them either, so as we left we gave them to another fiddler.

Anybody who lives in the Rochester area should think about coming to "Journeys", a big event for TLC - Teens Living with Cancer. It's going to be really wonderful, and we're putting on a show. It's on October 17th, more info here:http://www.teenslivingwithcancer.org/2009/08/10/journeys-2009/

I'm finally starting to tire out. Fast. I got side tracked when I went to find a link to more Journeys info. Read some articles on the TLC website, really good stuff. =)

So anyway, I'm going to sleep, now that I've lost most of that hyper stationary bouncyness. =P

OH, WAIT. NO! I forgot about the yellow paint!!!

The yellow paint. I've started having to take this wonderful medicine every day to prevent a certain kind of pneumonia. For most people, the pneumonia (not just pneumonia, but I can't remember what it's called) is not a problem, but for me it is extremely serious. It was explained to us, but I can't remember exactly why it's so serious. Anyway, there are several different antibiotics that I could take for it. I started out taking Bactrim (I think that's it), a pill three times a week. But the problem with that one is that it can potentially suppress blood counts. And mine were definitely suppressed last cycle. So we had to change to the second choice. Yellow paint. That's exactly what the doctors call it. (It's really called Mepron.)
It is fluorescent yellow, and very much the same consistency as many kinds of paints (kind of runny, but goopy, with weird seperations). INCREDIBLE stuff. Incredibly... blechy.
I have to take 9 mL daily. But actually (I was very surprised by this-->), it's totally do-able. 
When I saw it (and even before I saw it, when I HEARD about it), I wondered if I would be able to keep it down, with all my stomach-upsettedness.
But it doesn't smell that bad, and sure, the texture is kind of awful, but the taste is only bad in a weak kind of way. So I make sure that I've got some kind of yummy food ready, down the 9 mLs in one go (though I have to scrape out the cup, so I can't REALLY do it in one go...), and go on my merry way with the yummy food.

Ok, now I can go to sleep. =D

Stuff To Do

To Do Soon-ish/Goals/Things I Want to Get Done:

->Get my jewelry business up and running again.
->Practice flute more -- get back in flute shape.
->Learn the Dutilleux Sonatine, Cimerosa concerto, and the Hindemith flute Sonata.
->Play contra dances more.
->Strengthen foot percussion again.
->Visit friends I've been meaning to visit.
->Sort my things and get rid of a lot of them.
->Henna tattoo my head.
->Go to acro in Olean.
->Write letters, reply to friends' letters.
->Set up a very cozy, nice space in our new apartment.
->Think about college visits and timing.
->Compose more.
->Make a tune-book of my tunes/write them all down in one place.
->Write more blog entries.
->Fill in my spaces on the TS recording.
->Be super prepared for the RFA competition.
->Study for SATs/take SATs.
->Be in normal physical shape.
->Practice piano.
->Get more sleep.

Life Is Moving Right Along

Sooo far behind, I've been really bad about keeping you updated. 
Here's what's up!
Last few weeks have felt kind of normal, in a strange way... 
For one thing, my chemo was delayed for about three weeks. A 6 week long cycle instead of a 3 week one. My counts didn't come up enough to start again. So we checked, and checked, and my red blood cells went up, and my platelets went up, but my neutrophils/white count didn't. Every time I got a blood test, I was sure they'd be up. But three weeks went by. So I was really neutropenic for a while. Didn't get any chemo, and I felt fine. Great, even. 
I played an entire contra dance with one of my bands, Tunescape. The Rochester contra. It was a complete BLAST. I didn't even feel much more exhausted afterwards than way back when. Sooooo much fun. And we went out for sushi before the dance, which is kind of a tradition, though I didn't have any sushi (sad, but unknown raw foods were a no-no for neutropenic me). But the miso soup was AMAZING. 

I have gone to three TLC (www.teenslivingwithcancer.org) meetings so far, and I'm loving them! The people are wonderful, and I've been really enjoying meeting them. 

I saw two of my really close friends off, in the last few weeks, as they took off for college for the first time. I've been really involved especially with helping Sylvia. I spent a huge amount of time at her house, keeping her company during the packing/moving out process. I felt really glad that I got to do something important for her in return for her crazy amount of time spent with me this summer, especially in the hospital. And besides, it was a good excuse to spend extra time there!

I healed well after the insertion of my second port (the central line that I had put in over a month ago), and the big hole that was where my old port was is almost completely filled in.
Yay!

It was likely that I got some sort of virus last cycle, which some of the doctors at clinic think could have held my counts back. And now I've been sneezing a LOT, and snuffling, and it feels like what I imagine allergies feel like, but I've never had them before. But I've heard things like that can start with chemo. 

It's been fun noticing the foods that I really like/have liked lately. 'Cause food means a lot right now, especially since my appetite has been slightly lacking/weird. 
Yum list: Soup (mostly vegetable), green beans (sautéed, with or without other stuff, though with soy sauce especially), cucumbers (raw, by themselves. Mmm. But you've probably already heard me talking about them), carrots (dipped in salad dressing or by themselves), SALAD, pickles (whole crunchy dill pickles), salad, tomatoes (just whole, by themselves. Wonderfully messy!), zucchini, corn on the cob, rice with stuff, potatoes, bean burritos (with some cheese, tomatoes, salsa, and sour cream), baked tofu, that green juice that Odwalla makes, sour gummi worms (don't know where that one came from, considering all the healthier foods I've been thinking about), salad. Salad, as in dark, crunchy, wonderful, fresh lettuce, with some sort of salad dressing (vinaigrettes, Annie's Goddess dressing, garlicky, yummy). I don't usually make the salad with any other vegetables, for some reason. I think because I'm so eager to eat it right away...
But as I obsess with the salad, and veggies, and things, everybody keeps telling me that I need caloriescaloriescalories. So, a few days ago Sylvia said something like, "Ok, before you have your salad, you have to have some ice cream." So I did just that. The ice cream (vanilla, my current favorite) was nomnomnommy, but as soon as I finished it I went straight for the vegetable drawer in the fridge. :D

I went home for the first time since sometime in May a few weekends ago. It was WONDERFUL. I live about two hours away from Rochester, and I am pretty tied to being in Rochester for the next two-ish years. 
But mom and I took a weekend and drove home. It was great. I cuddled my cat a LOT, and my dad and I curled up on the couch and watched a bunch of movies. We also went to Bradford for the weekly anti-war protest, and hung out with those people for a while. 
I drove the Cabriolet with the top down, which was a blast. I adore that car. It's old, and tiny, and fun to drive, and it's a standard, and it shifts nicely. <3

I've been also having fun monopolizing the shiny Mac laptop that my mom got in exchange for the lemmon iMac we got last year. I adore this keyboard. Nuff said.

Today, after watching Sylvia ride off to another life, one in college in Canada, Mom and I drove over to the Waymans' place. Mom swam in the lake, Betty windsurfed, and I sat on the grass next to the lake and worked on a bracelet. Finished it. Then I started feeling a little icky, and cold, so I moved into the sun, put on a hoodie, and curled up on the side of the hill. I slept for over an hour. 

Some things that are really exciting, that should probably have been earlier in this post, because of how exciting they are.
Ok, well, this first one is possibly the most exciting just to me...
About a week ago I finally took out my seed bead collection. I used to make a lot of jewelry with them, especially in the car on long trips. I would sell them wherever I got the chance, especially at the beach. But I went a long time without making anything. Then, when I went home a few weeks ago, I brought my whole bead collection back with me to Rochester. And the bead loom and beadweaving supplies that I was sent while in the hospital. I'd been wanting to try bead-weaving for a while. 
I went to work on it, and came out with a bracelet that I was extremely happy with. And then I made another one. And another one. And I love to make them, and I already have three commissions. 
So this semester I'm only taking one class at MCC, calculus. I'm planning on spending my other time on music, some college-searching, and re-starting my jewelry business. I had mostly focused on chain-maille over the last few years. I still have a lot of that inventory. I want to combine these new bracelets with chain maille, and do art shows and things again. 
This may be crazy, but I really want to do it.

Other exciting thing...
I got chemo yesterday! FINALLY.
I got another blood test on Monday. Not high enough. I think the problem counts had even gone down. If they hadn't really gone up a lot by Wednesday, I was going to have to get a bone marrow test on Thursday.
Went in for labs at 8:30 Wednesday morning. Got a phone call several hours later from Margaret (one of the Nurse Practitioners, she's been really involved with all of this, and she's really awesome). She was so excited. They'd come up!!! I could get chemo that day!
So we drove back to clinic Wed. afternoon, and I got the whole lot: Doxorubicin, Dexrazoxane, Vincristine, and E-coli Asparaginase. 
I spent that time in clinic working on another bracelet. (That was where the commissions came from, especially from Laurie, the other NP.)
And so far, after this chemo I've felt fine. A little ickier, but not too bad. 

Some of us teens at TLC are planning on a little tour of the hospital sometime soon. Some of it including the tunnel, and the painting, and maybe a trip up to 41400 to say hi to the nurses. 

Ooooh we got an apartment up here! We haven't moved in yet though, the landlady wants to fix it up some more first. And she said that I can paint my room whatever color I want. And I want to paint it bright, with different walls being different colors. Excited. 
It's a cool little apartment. It's on the second floor of an oldish house right in Rochester, and the best thing is that there's a room up on the third floor that we get too. That'll be good if the downstairs people are noisy, or if we bug them too much with our playing tunes at strange hours, and me doing foot-percussion (it'd probably sound like the ceiling was about to cave in).
It's all wood, and simple, and has potential for being colorful and cozy.

My hair started growing back. Not drastically. There's just a shadow that's consistent instead of patchy, where my hair would be. And it's soft now, instead of occasionally prickly. But it's gonna get knocked out again. :P

I've been reallllly liking being bald. I'm totally used to it. It's ridiculously easy to take care of non-existent hair, and it feels so good. But hahaha I was cracking up so bad when we went into a hair salon for my mom. I did NOT ask for a haircut, much as I was dying to.

And I have an appointment in less than 9 hours, and I need to sleep. 
G'night!
And NBTSCers, I missed you all a lot this week, and wished I was there at Camp Myrtlewood, seeing your lovely faces. But hopefully I'll be able to make it next year. :)