Journeys!

Journeys. Was. Amazing.
Journeys? Journeys? What's THAT? The band?
Journeys is an annual benefit for the Melissa's Living Legacy teen cancer foundation, and Teens Living With Cancer (TLC), based in Rochester.
A lot of the nurses and oncologists come, as well as families, friends, and anyone else who wants to attend.
This was my first year. Me and some of the teens from TLC had been working with Lauren Spiker and a whole crew of people, starting some time in August or September, to create a short performance about our own personal experiences with cancer. We each came up with a character to represent cancer and ourselves. The process was really cool, and also sweet, fun, and deep.
We met pretty much every Tuesday evening, and some Saturdays. We spent hours writing, making collages, talking (LOTS of that), recording, learning how to be marionette puppets, thinking, drawing, laughing, contemplating, discovering, reminiscing, tossing ideas around, listening, doing photo shoots, interviews, looking, creating, changing our minds, comparing experiences, supporting each other, and plenty of other stuff.
The people we were working with. Amazing!!!
The PUSH Theater company (http://www.pushtheatre.org) was REALLY fun to work with, and we got so much out of their help choreographing and being in some of our pieces.
We got to work with a photographer, graphic designer, sound engineer, writer, video people, and of course Lauren, who started the group, and Leah, who received the Make A Difference award this year.
Anyway, I could go on forever about the group, and all that, but I'll just put a links to the websites and Facebook group. =)
http://www.melissaslivinglegacy.org/
http://www.teenslivingwithcancer.org/
http://www.facebook.com/group.php?gid=37673471877&ref=ts

Anyway.
My little piece of the show (we each had about 2 to 3 minutes) was this.
A girl in a snow globe. At first she doesn't know she is in it (Life B.C. =D Thanks, "Side Effects" (Book. Go read it.). She's sitting cross-legged inside, playing a flute. The tune is fairly cheerful, a semi-bouncy jig (one that she's written). As she plays, shadows start coming around the globe, glaring menacingly at her and showing claws. She keeps playing. They crouch around her and watch, she doesn't see them. Then the globe starts to rock, and suddenly shakes and shakes, and is set back down. Snow is falling, but not ordinary snow (or snow globe snow). It's made up of gauze, alcohol prep pads, syringes, needle wrappers, parking passes, biohazard bags, numbers, and words like "Hematocrit" and "Platelets". She tries to keep playing flute through it, but the notes falter, and stop. She looks up at the things falling on her, and grabs, reaches, shields herself, and is even a bit curious. Slowly she picks up her flute again, and starts playing a low, minor, slow, gentle (but firm) tune. She falters at first, but eventually picks up confidence, and the shadows start backing away. The "snow" has started to settle around her, though there is still plenty falling. Some of it is sticking to her, some is just brushing past her, and some is missing her entirely.
And that's sort of where I'm at now.
But wow, going back and reading that, I see how dramatic it makes me sound. Not everything works out quite as easily as it sounds. I hope I captured it more at the performance.
So. PUSH members were the shadows. They were brilliantly menacing and shadow like. =)
I really did play my flute, almost as I described it there. And when the stuff starts falling, the shadows dropped handfuls of gauze on me. The rest of the stuff was done through animation!
That part was really cool. We all spent two meetings at Penfield High School, with Dave, in the computer lab (something like 20 Macs, it was great). We used "Motion" for my piece. And he found a snow animation effect! And we could use images as the snow instead of little white smudges. So I brought in a bag full of random stuff I'd collected. All that stuff I mentioned earlier, and more (never did use the syringes, though). And I scanned them in, and dropped each one into the program. Overlapped them, started them and stopped them in different places, played with sizing and quantity... It was fun.
And then we took a video of a snow globe being shaken (Lauren brought one, and it only had one little statue thing in it, which Dave managed to take out (the globe was a bit leaky after that, but it still worked).
He put together the finished video, and it was projected onto a screen on the stage, like everyone else's. Oddly enough, I still don't know exactly how the video looks, because I couldn't see it while I was on the stage, and there wasn't really time before, since we were all pretty busy. But I hear it's pretty nifty. =)
Dan, the sound guy, did little recording sessions with each of us. Everyone recorded themselves reading the pieces they'd written, though in my case I played flute. Played long tones, low-ish notes, and some where I was trying to sound shaken up. We also did a little talking piece, basically for me to describe my story.
Then he put everything together, used some cool effects and overlaps, to make this eerie soundtrack of random words (I had been describing all the stuff falling on me), eerie flute tones, and the sound of water dropping and swirling. So that was playing during the snow globe shake up, and after, so I was kind of harmonizing with myself when the shadows were leaving. It was so cool!

Everything really came together, right at the end. It was hard, because there was SO much material to choose from. We changed our minds so many times, and the stories twisted, transformed, and got tighter and tighter every week. It was really cool getting to see the creative process like that, and getting to know each other while we were at it.

One of the big highlights for me was the photo shoot. One week we met at Carrie's studio, and created our costumes. Mine was a long sleeved black leotard with black pants.
Simple, right?
NOT. Catherine and I used Steri Strips to attach all sorts of junk to me. Like cotton swabs, hospital measuring paper, alcohol prep pads, biohazard bag fragments, masks, gauze galore, and a syringe attached to a tube wrapped around my arm (Jessie, my home care nurse, let me raid her supplies for all sorts of stuff. It was great). Johanna did a fabulous job with my make up. Around my eyes was mostly white, with black, silver, and a little bit of red under them. My lips were half dark red, half shiny gold, but they were split up kind of like a checker board.
The photos came out AWESOME.
I was throwing extra junk into the air, grabbing it, biting it, being scared of it, being fascinated with it, sitting in piles of it, hiding behind it, and ripping it. Then some PUSH people came on, and we had a series where I was covered in random hands, and they were "injecting" stuff into me, supporting me, and surrounding me. We also had a series where they stood off to each side and stretched two pieces of plastic wrap all the way across. I did things like stick my face into it, push my hands forward through it, and eventually I ended up getting wrapped up partly in it.
The last one was with my flute. I sat on the floor "playing" my flute, and some PUSH people lay next to me, out of sight, and put their hands on the flute too, so it looked like I had about 6 hands. Of course, I couldn't resist playing a little bit, which was funny due to the circumstances.
Anyway, I think I'll have the photos soon, which I can't wait for.
I didn't get to see much of anybody else's shoots, but I did get to see some finished products (we each had a poster at the event). They were ALL ABSOLUTELY AMAZING. Gorgeous, brilliant, thoughtful, full of attitude and snazz, It was great.

At Journeys.
The whole huge room was set up all fancy and shiny. There was a silent auction, and live music (a small high school jazz group, and I think a high school chamber music group, though I didn't get to see them), and quesadillas that were being made to order right there.
We got to "mingle" for about an hour. It was nice getting to see people in a setting other than the hospital. We mobbed Eric, the awesome social worker who arranges all sorts of things, and is just really... awesome. Anyway, we mobbed him to find out if he knew any exciting/interesting places in the hospital that we could include in the hospital jaunt that we're planning. We want to find that tunnel again (I told them about the painting on the wall), and possible visit an old office that is supposed to be cool, and of course visit 4-1400, the unit that we were all in at one point.

Then we went back to our lovely lounge and got ready. For my make up Heather did a really nice, kind of subtle gold and black thing with my eyes, and I didn't do lipstick because lipstick and flutes just don't mix. :)

My costume was just all black, which was enough because of the stuff being dropped on me.
Everyone's costumes were so well done. Paige with Dorothy, a Dorothy-ish dress, rainbow striped socks, impressive red high heels, and a cool head scarf. Jessica was all out glamour, with a sparkling dress, long blond wig, fish nets, and plenty of glitter. Bryn's show, with sequined dress, arm fishnets, shiny gold leggings, and awesome top hat. Micaela's angels, with a pretty pastel colored dress and scarf, with light blue eye makeup. Bethany's safeness, looking wonderfully cozy and comfy. Brittany's soccer cleats, with her Live Strong hoodie, soccer shorts, socks, and shoes. Amber's two sided person, with her blue overalls, white dress, and amazing pink eye makeup. And Leah's boat, with her night gown, gigantic green rain boots, and green makeup.
You girls, you're amazing. <3

Eventually it was time to wait backstage, in the little creepy-ish "green room". We sat in there and tried to feel ready, some of us whispering, joking, or just being quiet with our eyes closed. We passed a squeeze or two around the circle, thanks to Bryn for suggesting it. Once it got started, everything went pretty quickly (unlike at the dress/tech rehearsal earlier that day, of course. ;P ). We noticed how much the mood was in the air, just by stepping part way up the steps to the stage.
It was incredibly emotional, for lots of people, in different ways.

One by one, we went out, performed our piece, and came back. I was near the end, though before Bryn and Paige. For some reason I wasn't really nervous. I stood in the wings, as Bethany was on. I hung on to my flute, and blew air through to warm it up. Then the stage was empty. I walked out and sat down center stage. Picked up my flute and started playing "The Icy Drive", a tune I wrote a while ago. The lights were bright, I could barely see all those faces. But I could see the candles, their little flames sprinkled all over the place, one at every table. And of course the little red lights of the camcorders. :)
The shadows crept onstage, circled around me, crouched. I kept going, ignoring them at first. I played about one and a half times through the tune, but then they had stood up, and started dropping gauze on me. I could barely hear the sound effects. I tried to keep playing, but faltered, and stopped. Anyway, it was basically the same as my description earlier.
I was having such a good time, sitting there playing flute while stuff was dropped on me.

I guess in a way I'd missed being on stage, with real lighting and everything. I was diagnosed about 2 weeks before my last dance recital ever (we do recitals every other year, alternating with a tech year), so I didn't get my stage fix this year.
It went really fast. I had a bit of a hard time standing up, since my balance is still a little iffy, and I was holding my flute, but I managed. Carried my flute off-stage, but stayed in the wings.
There's more about the next pieces, and stuff, but I'm tired, so I'll post this and write the rest later. :)

I Remember...

I remember the bus, full moons, the Carbondale Colorado Mountain Fair, tents, streams, typing tutors, Gravitz's jam sessions, climbing rocks, selling jewelry, making yarn dolls, crocheting bookmarks, being a unicorn in ballet, tiny tutus, "Satin Hands", face paint, fire poi, hula hoop contests, small bridges, the backstage tent, the main stage gazebo, driving across the country, sand dunes, Mexico, the Emerald Coast, cheese, fresh made tortillas, lying in the pine needles, the spontaneous wordplay project, that green paint, this cat ring, Daisy and Rascal, don't quote that, Java's, dance classes, Dance Arts, All the World's a Stage, Prairie Players, family visits, cousins' weddings, the pumpkin patch, playing with dolls behind the couch, piano, sliding glass doors, the smell of her house, cutting my own hair, the tail I left in the back, being three, the pop-top, the van, mountain passes, winding roads, hot springs, hot springs, hot springs, Big Bend, raccoons, my toolbox, my crib, the ceiling, snow at Tehachapi, being sick, a gold-covered rose, old friends, pajamas, playing in the refrigerator box, playing the Hobbit, the penny wishing well at the Champaign library, the old Urbana library, the bay area, play group, park day, chasing Mason around the gym, Meadowbrook Park, don't touch the woodchips, science experiments, the ridiculous carpet in the kitchen, vacuuming, Skip-Bo with Sadie, water fights, soccer, the reversible jersey, mud, Lake Shelby, camping, climbing Mt. Sopris, sunrises, fog, deer crossing, elk, bison, marmots, the tundra, tree lines, the rope-tow, being on the road, Red Mountain Pass, Tucson, Bisbee, Terlingua, Nederland, swimming in the salt lake, picture albums, starting flute, recorder, sharpies, henna-ing my hair, long hair, shampoo, hairbrushes, sleepovers, bunk beds, Central Illinois Children's Chorus, pliers, wire, learning chain maille, GirlZone, zine-making, coloring books, crocheting, kittens, linoleum, wood stoves, stove pipe, kindling, campgrounds, my little bike, getting a bigger bike, swap meets, rust, hiking, boots, camp fires, clouds, hot springs at night, Glenwood Springs, Peroxide, frost, cows, wind turbines, the Altamont Pass, airplanes, bees, the Compaq, tetris, violin lessons, Spanish, the restaurant game, the dress that Beverly gave me, Bridget, Berkeley, Oakley, addresses, miniature golf, plastic giraffes, lobbying, toy cars, the black widow spider, Bethel Island, bears, a mystery lollipop, nothern lights, the big dipper, Salamander, going to the Muramatsu flute place, Flute World, bass flutes, fish, learning to drive at twelve, the first time I used the clutch, the road test, colds, moving, the house on Barnum Rd, Rock City, walking to the library in Olean for the first time, waiting, the squirrels, the Ramona books, Fudge, Little Britches and Sneakers, Bombadil, mailboxes, walking up the road, Kaitlyn's house, badminton, pine trees, sledding, walking to Crosby's for ice cream, Tickletown, light up keyboards, auditions, dress rehearsals, The Theater Workshop, Krypton, the elements, improv, stages, tape, S.T.A.R., burritos, Don Lorenzo's, hats, Indian food, Thai, making sushi, CSI, Doctor Who, going back to visit, scarves, Metaldrop on Nevadan, the Nevadan, walking to ice cream with Autumn, yawns, typing, Dance Flurry, promises, movies, quarters, the bowling ball fire, marble, Cafe Lena, The Parting Glass Pub, organic, ice, leaning heads on the cold brick wall, breathing, contra, dust, aching, fire alarms, water bottles, quilts, Ashokan, the wiggly bridge, rain, rain, rain, the percussion workshop, cartwheels, sand, turtles, towels, Fire Island, crickets, waves, the dunes, Jr. Ranger programs, don't feed the wildlife, Davis Park, sand castles, sand dolphins, salty hair, yogurt, coconut popsicles, the bay, projectors, thunderstorms, lightning, lights.

Gahhh

Ohhh, lookey, a frustrated post! Because I'm just so FRUSTRATED. I got half an hour of sleep last night. And for the stupidest reason. That whole mega-spit thing was completely out of control. It's been pretty bad for a while, but it's never kept me up all night. And it's still happening. All the time. Everywhere I go, everything I do, is always accompanied by saliva, and it tastes awful, and I can't just SWALLOW it, because then it makes me feel sick. I've tried chewing gum, several different flavors, I eat pickles and tomatoes and crackers and chips and nothing dries it up. I can hardly even play flute, because I have to stop and SPIT every ten seconds. To top it off, I have a hard time walking, because my joints are ceased up from Decadron and chemo and I have to think long and hard about whether it's really worth it to go up the stairs. Even when I'm sitting, it's all just pain and spit, and I'm just so TIRED. I want to go to sleep, but I can't. I'm going to play the Rochester dance tonight, and TS is going for sushi first, and I can't WAIT. I hope some crazy company and miso soup and music will distract me from this nightmare.

My Hospital Bracelet Matches My PJs: Recent Goings On and Events

The blechy-est of blechs sometimes bring on the coziest of afternoons.
I'm alone in the house, wearing my beloved pineapple PJs, curled up on the couch, blaring Crowfoot's newest CD (Footpath) throughout the house. I feel gross, magnificently so, and it's given me a great excuse to stay in today.
But not in all day. I'm saving my energy to play the Rochester contra this evening with Jane and Tim. I'm really excited for it. Really excited.

I spent the last few hours reading "The True Confessions of Charlotte Doyle," and finished it about half an hour ago. I missed reading those sea adventure books. I read both the "Beyond the Western Sea" books, also by Avi, a while ago, and several others by different authors.

I haven't read much the last few months, even though I have no shortage of books around me. I'm in the middle of "The Thirteenth Tale", which is really good, but I haven't picked it up in a while.

Ok, I mentioned Crowfoot earlier. Go check them out! www.crowfootmusic.com

But, if you live anywhere near Rochester, you won't have to go far to hear them live!
Because...
THEY'RE COMING HERE! FROM QUEBEC AND MAINE! AND YOU SHOULD COME AND SEE/HEAR THEM! BECAUSE THEY'RE AMAZING!
Right. Erm... Caps lock key got stuck on. =P

Basically, they're amazing people, and musicians, and they're coming to Rochester, and they're playing on November 1st, 7:00 PM at Harmony House in Webster.
It's going to be wonderful.
Here's their website: http://www.crowfootmusic.com/
Once I have more info, I'll try to make an event or something. =D

Dose #12 of 30 for Asparaginase. I've got something like 5 cycles of the big chemos left. Stuff evens out and slackens up, supposedly, sometime in February.
My bone marrow biopsy came back clean.

OK, another plug. GO TO JOURNEYS! IT WILL BE AMAZING! Saturday October 17th, 6:00 PM
Be there, be square triangular.
http://www.teenslivingwithcancer.org/2009/08/10/journeys-2009/
There will be theater and music and costumes and stories and general amazingness and understanding and information and teens involved and me involved and laughter and tears and I want you to be there. <3>

Crazytalk Pt. 2

Continued from previous post. :)

So, mom just randomly woke up (no, really, I wasn't being noisy, or even having trouble not laughing out loud), and saw that I was still up, and of course, she said I really need to go to sleep. Ok, so I already knew that, and I tried, a while ago, but yeah. I really do need to sleep.

I have to get up in an hour and a half (I've been telling you how long until I have to get up, but not actually telling you when I have to get up. I have to get up at 7:45. Or at least, that's when I set the alarm for. Because I have to be there at 9, and it takes about half an hour to get there, and I want about 45 minutes to get ready, because I have a lot of things tomorrow (ok, in this case just the two, but clinic is time consuming), um, excuse me, today. Yeah. But I CAN sleep (potentially) at clinic, there's a fully reclining chair in every room, and I have a long transfusion (it can take up to 3 hours per unit, and I've got 2 units, so if I try I might be able to get 6 hours in right there (yeah, cancer is definitely a big time-sucker, it sucks time in quantity, but yeah... Anyway, it's kind of hard to sleep at clinic, but I bet if I've had none until then, I'll sleep. And then after that, whenever that is ('cause we never know), I have flute choir at 5, but I really hope I can go, and that clinic doesn't last THAT long (though I think they close at 5, so that would be fine.)

"I'm really worried about getting sick."

Mom "You are."

Yeah, ok, thanks mom. I know.

'Cause she just got up, and I warned her, BEFORE she looked at the time (it's about 6:30 AM now), that it was later than she thought (she thought it was about 4). And we talked (whispered, rather, I don't know the sleeping status of the others in the house, I'd imagine they'll all be getting up soon) for a little while, and now mom says she completely understands, she's had it happen too. So she's still sitting next to me, but she can't see the screen, I guess because of eyesight and my low-brightness setting, so she'll have to wait to read all this!

AAAAAAAHHHHH backrub, THANK YOUUUUU! I've been sitting here in the SAME position for yeah... Only 6 and a half hours. Oh, minus the twenty minutes that I lay down for... NO, 5 and a half hours, yeah, ok. Sorry. ONLY 5 and a half hours! Wow!

Anyway, love you mom, thanks!

She's gone back to bed.

So yeah, now that I've got her approval (at least, right now, or, hey maybe she already disapproves again... Guess I'll find out later.).

Whoops. Sounds like someone's up. I hear footsteps, and a door squeak. Ok, that's REALLY made it official that I've stayed up all night. Oh, and wouldn't you know, the blinds have this slight glow behind them. What could THAT be?

They might hear me in here typing, and think, "Oh, they're up early too! Ok." Noooope, wrong. One of us hasn't gone to bed yet, actually... Guess I'll have to explain that one too.

But at least I'm writing about it, can't say I'm being all stealthy and secretive. =D

I just opened the blinds. Sorry mom, I know you tried to go back to sleep, but I couldn't resist. It's a lot lighter than I'd thought, I guess these blinds are pretty light-blocking, for white, kind of papery ones...

There's a sunrise out there. A nice one, with some clouds, kind of light yellow on the horizon. Ohhh wow, yeah, I've always loved sunrises, but I hardly ever see them. Since usually I'm asleep at this time of day. In fact, for most of the sunrises I've seen it's been after staying up all night. Yeah, this isn't my first time or anything. I don't have an exact number for you, but there is definitely a handful of times, maybe two handfuls, I don't know.

Anyway, I don't see the sun yet, but it's getting brighter and brighter... It's not a great view out this window, or at least, not from my angle. I moved closer, trying to see more of it, but there's a little table in front of the window, and it's kind of hard to get around it to see more around the edges.

And now I'm typing all through it (though I am, of course, glancing up often. But no, I'm going to take a break, which I'm sure won't hurt me, and look closer, because this is rare!

Well, I managed to get it so that I'm sitting near the corner of the bed, with my legs in between the bed and the table, and I'm right next to the window, and I've got a good view of the sunrise. Perfect! I was going to just watch, but I couldn't resist commentary.

Of course I couldn't resist commentary, am I really going to watch the sun rise and not have anything to say about it? Anything useful, maybe not, but definitely something. Ok, I think sunrises are pretty meaningful, and so maybe something useful will come from talking about them. And anyway, define useful. There are all sorts of ways of defining that word. Or so I think. But right now I'm going to talk about sunrises, not defining useful.

Of course it's gotten a good deal lighter while I typed that little sidetrack.

But THANKFULLY I've been typing for a very long time (not just today, but ever since I can remember, I was always into it, I thought it was a game when I was little to learn to type and be able to type words without looking, and such. So I can touch-type fairly confidently. Anyway, the sky is more overcast than I realized at first, except I think the reason I didn't realize is that way over there in brightandshiny-land where the sun is rising, it's actually clear, and the clouds just start closer home. Good old Rochester, our eternally cloudy skies... Not eternally, just very often.

Anyway, those clouds that start closer, but still a ways away are just getting brighter and brighter. They're a lot more orange now than they were before (again, wow, deep thinking! Sorry, can't resist giving myself a hard time there). I'm commentating! Yes, I am, Nadine, good catch!

Now ALL the clouds are some shade of orange, or pink-ish, though still grey on top, I can see the depth of the ones further away, it's neat. Just their bottoms are orange and bright.

Still can't see the sun, but it's just brighter and brighter!

(6:53 AM) Oooh, timestamps now, there's an Idea (I accidentally capitalized it again!!! I think it's something about that word that just wants capitalization. Wow. Idea has been such a big word for me lately anyway, because of all the ones I'm getting, and that's pretty cool how I capitalize it without thinking.

Of course, a lot of this is without thinking, but really it's also REALLY with a lot of thinking, all I've been doing is thinking. So I still call it without thinking (but that capitalization is without thinking, so it seems).

Ok, sorry, you're sitting there wondering about the sunrise, and I'm talking about THINKING? Are you kidding? I mean, am I kidding? Ok, no.

The sunrise. Right.

Brighter! Wow, wouldn't have guessed...

(6:56 AM)

Ohhh, I just love this.

It's hard to look right at the brightest clouds now, the sun's about to show it's beautiful, wonderful, amazing face, and it's just suspense all over the place as it... hasn't come yet. Hasn't come yet. But I can't look too well, so maybe it has, though for some reason, I just don't think it's quite come yet.

(6:58 AM)

Great, it's me right here in semi-live timing (I mean, it's NOT exactly accurate, because the clock doesn't have a second hand, but I think that would be going too far anyway, and I'd waste time with seconds and stuff when I could be watching the sun rise!

*Watches sun rise*

Hasn't come yet, I can tell, but those brightest clouds are pretty bright. OoooooooHHHHHH, I SEE THE SUN, a big globe, but I can't see the whole big globe (I know it's there, behind that tree, though!)

Bigger! And brighter too, ouch. Ok, I'd better not look too close again, it's not as gentle as it was before, and my eyes are pretty sensitive. But I know it's there, and I can feel the light get brighter and brighter.

So I was thinking, what if the sun just went and turned around right now, and started going back down. Maybe it had a bad night, and wanted more sleep. "Nope, you know what, I didn't sleep very well, I'm just gonna, y'know, go back and grab a few more zzz's, k?"

Yeah, so since I'm practically sitting in the window, and things (I don't know what things, I just put it there because.... I don't know, I think it's become a bit of a habit, using those words "and things" or "and stuff". I dunno, maybe I should try to break the habit. We'll see.), I could see George go out and get the newspaper at the end of the driveway that I noticed was there (noticed a little while ago, actually, typed a little side note with all the other little side notes I've been typing, in a list, further down this post, which has grown a lot, now that I really look at it. Oh, both the list and the post, I hadn't specified. Well, my sentences haven't been entirely grammatically correct throughout, but I stopped stopping to fix them a while back. Don't know how bad it is, haven't checked. I'm trying to do it as I go, but of course, I always miss things.

And imagine my shock, when I went to save a draft, and discovered that for who knows how long I've been typing in the TextEdit window instead of the Facebook window. Oh, well, I guess it's understandable, because, I guess since I've been copying from Facebook into the TextEdit (don't ask why, I could be doing it in the program first and THEN putting it on Facebook (oh, well, no, I like to see the red one if it pops up, ok, that's fine). Got lost in the sentence again, hang on. Ah well, I'll just start here... Since I've been copying into TextEdit, I guess it took the font along with the words, and the little red line still pops up and everything! (Haha, with "Facebook" there, three times in the paragraph (four now). Great, so I get to see how many times I've said "Facebook" in the last paragraph (five now). That really gives us confidence about life outside of the computer. Unless it's only me, in which case we'll say that I may or may not be off my rocker anyway, so it's not an issue. (See, this stuff makes perfect sense to me! Maybe it's just me. I won't really know, unless somebody tells me, or I witness it in someone else. =D

One thing for sure, though, I like just going "control+s" for saving. I don't know if that works in Facebook (though sometimes I try "control+z" for undoing, and it works! Heh, I call it control, even though I'm using a mac, and have been for a while now, or so it seems. I like them a lot. I still use a PC sometimes too, that's all that we used to have, but one computer too many broke (though they were older, and cobbled together sometimes because we like to do that, and they were definitely interesting, possibly more interesting, to have, and I enjoyed it some too).

So I like this, I can type in TextEdit with Facebook's font (because I'm REALLY used to it after all this typing, and I like it, and yeah...) but I can still see the red one that pops up and see that SYLVIA'S UP, and now I can talk HER ear off TOOOOOOO! *Supper happy excited and grinning*

"But really, how have you been!

?

I mean."

Yeah, this chat will be interesting. And looook, my font changed, because I copied and pasted from iChat! I don't know if you can really see it, but I can (and I tried to type a capital "I" for emphasis, but obviously that isn't going to work... I guess

"deen-girl, you REALLY need some sleep... you're INSANELY HYPER!!!"

Sylvia, thanks, yeah, I was trying to explain that part. <3

deen-girl, you REALLY need some sleep... you're INSANELY HYPER!!!

Ohh, oops, I meant to get another quote, but I guess I forgot to copy it first... So you get to see it again!!!

Smooth.

"so, yeah, I want you to go to bed EARLY tonight (and not the kind where you stay up past midnight), and then SLEEP IN!!!"

YAYYY! I guess I kind of do need people to tell me to go to sleep.

But at least I don't need people (yet) to tell me to get ready to go, because I just noticed that it's 7:45 AM, and that's when my alarm was going to go off. I say "was going" because mom's now talking on the phone that I had set the alarm on, so I guess it wasn't going to go off, and didn't. Or maybe it'll go off in the middle of her conversation, and they'll be there on their (ohh, I'm proud of my "there" "their" "they're" skillz) phones listening to my ringtone choice of extra jazzed up "When the Saints Go Marching In". I set it to that because it was the most obnoxious sounding ring on the phone, and I figure that'll get me to get up and turn the thing off. =D

And now I'm actually in danger of not getting ready to go, because I'm still sitting here typing like I have been since 1AM. Yeah... 6 hours yeah! More than, actually, 'cause it's 7:49 now, and I have to goooo (goo? I have to goo... Ok.) in less than 45 minutes. Ok. Bye!

But ohhh, I'm not done. Well, I'll just have to bring the laptop to clinic. There's even wireless there... But then I won't sleep there like I planned. We'll see. Anyway. Ok. Bye.

P.S. (nooo, I can't have a P.S. I have to gooo (goo. Gah.) Too late.

Ok, quick, then.

I'm leaving the tidbits following this for your potential enjoyment, because they're my disorganization of having somehow ended up with that stuff where it is, and then there's the "side notes" which are really bottom notes, with stuff I planned/plan on writing about (and maybe some of them I've already done...)

HAHAHAHAH I NEVER GOT PAST THE ONE. THE RED ONE. The little red one at the bottom of the screen. Way at the beginning. Wow. (Or maybe I did, and just don't remember...)

Ok. BYE!

WHOAH, it's really shining now, right in my face, 'cause that's where I put myself, asking to be right in it's glow.

Typing window change

Clouds gone now

Kid walking to school

Map of my post idea

Reasonable-unreasonable

Sharing so much

Thinking of it right as I go to save the draft, and then already being on to something else by the time I get back to typing.

Embrace it while it lasts (how long will it last?)

Commas/punctuation

Sun going back down.

Newspaper on the driveway now

Yeah, anyway, copy/paste, and save drafts, and sometimes copy it into a separate program entirely and save it there.... yeah, definitely really worried. I'd really hate to write a whole bunch and then lose it all. That has happened to me too many times, and it's pretty upsetting for me....

Crazytalk Pt. 1

SOOOO, as promised, here is "Crazytalk," me typing through the night on Wednesday, September 16th, starting at roughly where the post "The Words Flow On" ended.

-Note: I was originally typing it for a Facebook note, so that's why it's got some Facebook references.-

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September 16th, 2009 4:30 AM

-->Wow this is crazy. I don't really know what you'll think of it, it kind of feels like something I haven't really done and shown people (a lot, putting it here on my Facebook.......) before, so bear with me... Or not bear with me (is that how you spell "bear" when it's used that way? I dunno. I'll check or ask sometime. Oops, guess I just did ask!). =P <--

----

So, I was about to start writing, because that's just what I DO lately, and the red one popped up. Heheh, the red one. That one over there, that is red. Anyway, you know what I mean, I hope, the red 1 at the bottom of the screen. Ok. Of course you do.

And now I'm just laughing at myself, because I dunno... I just strike me as funny, though of course that could totally be the combination of NO sleep for a while (and no sleep in a while ahead too, so it seems), and this ridiculous mood (that I keeeeeep mentioning. Because it just keeps occurring to me. Again and again and again. Yeah. Ok.), and other things... that I can't think of right now.

AAAAAANYWAY, the red one popped up.

Oh jeez. This is not working. I keep starting to laugh. Because I'm thinking about how funny this is to me (duh. That was really profound, I just thought I'd mention).

I don't think I'm going to get past the red one.

*Pause*

Maybe I will.

*Preparing self to get past red one. "Preparing-self" posture.*

I don't know if it's working. I think I'm making it worse. A lot worse.

I really hope you're enjoying this, because I DEFINITELYNODOUBTABOUTIT am, and I don't want to be annoyingly happy or anything...

I feel like now would be a good time to have a conversation with the world.

Firstly, I've just got SO INCREDIBLY MUCH TO SAY (I guess it would be a slightly mis-balanced conversation, between me and the world, you know, me being the one with more to say... I don't know. But the world has a lot to say. A lot. So incredibly much, so many people, wow. Maybe it WOULD be balanced... Yeah, that's how I feel right now. I feel like I've got a world's worth of stuff just asking to be said.

Oh, and it's 5:15 AM, and according to ummmm, me, once it gets into the 5ish area of morning, it's morning, and I've stayed up all night, and I have clinic in 3 hours and 45 minutes, and I was planning on getting up in 2 and a half hours, some of the people here may already BE up, because they have been in the past, and yeah. Whooooopie yay (that one was actually sarcastic, I feel kinda bad about not getting any sleep. Ok, more than kinda. But I have some reasoning, which is probably pretty unreasonable, now that I think about how reasonable I've BEEN.)

I was trying to go to sleep, and I was thinking a lot.

That sentence is just so blatantly (I spelled it "blantantly" at first, and was looking at it, and the red line of spell-check was under it bugging me, and I just couldn't see what was wrong. And I secondary-clicked on it, and it kindly told me that it SHOULD be "blatantly" and I was like... oh. Right. Ooops. So I already knew that I haven't got all my capacities right now (and I've got bonus ones galore)) obvious for me right now. That was, "That sentence is just so blatantly obvious for me right now. Because, for your ease of reading, I decided that I should break up a perfectly simple sentence with some perfectly NOT simple sentences about blatant mispelling. <--- Heheheheheh, which I neatly misspelled (not on purpose!!!!).

Now I'm trying really hard not to let any sound of my ruckus of laughing escape into the part of the world where other people can hear me. Like, four feet away, where my mom is sleeping (we're sharing a room here, but there are two beds).

So, for a bit, I'm calmed down from my laughing, had a chance to warn Ronny that I have another post coming, and it's titled "Crazytalk."

"Crazytalk" was just what I typed in real fast for the title before I saved a draft, but I guess it's going to stick.

I do that, save drafts, while I write. I'm really paranoid that I'll click on something wrong (and I'm using a track-pad mouse, with touch-clicking, so it wouldn't really be that hard, if I got excited and wasn't careful (which is actually pretty likely, believe it or not...) and lose the whole thing. So I copy-and-paste it. Or at least do a "copy" command, as a quick back-up, so that I can do a paste if I have to (that one's not too reliable though, since I sometimes copy something small, and forget. And then haha, one time I lost something semi-long, but I had done that just-in-case copy, and so I proudly and confidently did a paste command and I just got this little thing, a random word or something. Yeah. Major disappointment. I'd have MUCH rather had that semi-long thing, y'know, almost finished, and maybe it hadn't been the easiest thing to write... And this little word comes up instead. Like, "monkey", or "potato" (I don't know WHY I'd copy those words, but who knows.... ... <--Usually, when I'm writing (typing, really, though, lately. <--Wow, all separated by commas. Nice going, Nadine. I have to talk about the commas. But I'm talking about typing right now, so I'll wait with the commas. Just so I don't forget about them, though. Oooook, prioritizing now, are we. RIGHT. Typing. Ok, so anyway, usually when I'm typing, and I get something like those periods all there, with a space in between them, and there's too many (way too many), because I've gone back and changed something, or removed something, tweak, you know (I meant "tweaked", there, but kinda like how strange the "tweak" seems, so I'll keep it for you). Ohhh wow, now I can't remember where I am in the sentence, and can't remember what the sentence even WAS, because I was too busy with putting stuff in parenthesis. I'd say this is getting a bit out of hand. What d'you think? But it's really really really fun. For me. Yeah. I'm really having the time of my life here, sitting in the dark, on the edge of my bed for what... WHAT ALMOST SIX HOURS????????? Almost six hours. That just blows my mind, for some reason. Six hours. Of typing. Words. Just me and the keyboard and the screen (well, not quite, I had a couple of breaks, to comment-converse with a few people, because of that awesome red one). At least the screen's brightness is set as low as it'll go (though it seem's bright, I guess because of all the dark around me haha, what an Idea (and that just happened to come out capitalized! How quaint. I'll keep it for you. And me, as it happens.)

Anyway, time just FLEW. Wow, I wouldn't have thought it's been that long, but I guess it could have been... Maybe possibly. Oh wait, it hasn't. I don't think... Yet, I mean, I said "almost", right? Almost, anyway, a few minutes ago. I think I started at around 1 AM, maybe a bit before... Now it's 5:54 AM, according to my lovely computer. Oh, good. 5 hours. Ok. Well, yes, 5 hours? Hang on. 1AM2AM3AM4AM5AM6AM ('cause it will be in 2 minutes). Well that really seems like 5 hours to me, because see, if I count them, the ones I've completed, I get 12345 (I'm not counting six, because it hasn't been completed yet! Wow! Deep thinking, Nadine!) Ok, so that was done mostly in humor, because It's kind of silly, and..... I don't think that sentence needs finishing, I think I should start a new one and just ignore it there all sad and hanging....

*Laughing and trying not to make a noise again*

Wow, this is just so much fun. I can't believe how much fun I'm having here.

Oh, look! I capitalized that "It's", just randomly. And now you get to go and try to find it. Oooooh, scavenger hunt! For the randomly capitalized words! Noooooooo this is going way too far! It really is. But there's so much possibility. That's it, I just keep seeing possibilities, ALL OVER THE PLACE. Maybe I'll be distracted from the scavenger hunt one by another one, because I seem to be distraction-prone lately. Nooo, because the thing is, you won't know if I decided to do the hunt or NOT, so you'll have to start looking for randomly capitalized words, and I could be sitting here while you're doing that, just laughing, because I really haven't made any capital and special words. Except for the two that I told you about. But maybe those really aren't there (but you'd have noticed if the first one, Idea, wasn't done, because I pointed it out pretty clearly (or so I thought). And lookeylookey, there's another one! Right there, that Idea again. And again. Oh my!

This is too much fun.

Ok, so, moving on (maybeeee, heheh, but maybe I'm really capitalizing words in random spots instead (y'know, I'm not counting ALL CAPS ones, 'cause I use those anyway... Maybe too much, but anyway. Yeah. Just the ones that are Randomly capitalized (like that one! Yay!) Anyway, the thing is, you've been reading this (maybe), and you'd probably have noticed the ones I'd done in stealth and secrecy, maybe. So it's really just me being crazy in the way that I am and feel ok being (for now), in a note entitled "Crazytalk".

------------

Continued in "Crazytalk Pt. 2" =D

A Rare Sunrise

Watching the sun rise, a few weeks ago. I ended up staying up all night, typing. The whole night. I wrote roughly 9,000 words that night, just whatever came to mind. A few posts ago ("The Words Flow On") was the first part of what I wrote. But after trying to sleep for about 20 minutes, I realized that I just couldn't, so I kept going.

And I love sunrises, but hardly ever get to see them (only really when I've stayed up all night).

Anyway, I'll post "Crazytalk," the second part of that night, soon.

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...

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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