From My Random Place of Words

Journeys!

2009-10-22T10:33:00.001-04:00

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...

2009-10-20T16:34:00.000-04:00

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

2009-10-15T12:34:00.001-04:00

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

2009-10-08T15:44:00.002-04:00

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

2009-10-05T00:10:00.001-04:00

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

2009-10-04T23:37:00.002-04:00

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

2009-10-04T23:23:00.002-04:00

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.

2009-09-24T09:22:00.007-04:00

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

2009-09-16T04:16:00.000-04:00

-->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

2009-09-15T03:05:00.000-04:00

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

2009-09-14T02:22:00.000-04:00

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

2009-09-04T04:06:00.001-04:00

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

2009-09-04T01:22:00.001-04:00

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. :)

Address Change and a Little Extra

2009-08-17T20:19:00.000-04:00

Soooo.
Sorry for the long lack of posts! I'm getting back into writing, though...
There were a couple of things I wanted to post soonish, but I was trying to get a full post along with them. Well, that part is taking me forever, so I'll just start with this...
My address has changed, so if you would like it, e-mail/message me. :) My e-mail: nadine@nbtsc.org

Yeah.... It's changed a lot. At this point we're looking for something a bit longer lasting (in Rochester), but for the summer (which we weren't planning to spend in Rochester) that's how it's been.
It's pretty awesome, though, 'cause I'm staying in an apartment in the Kanack School of Music. Yeah!
Anyway... I have been enjoying a week-long delay in my chemo, since my counts hadn't come up enough to start the next cycle on time. I went contra dancing TWO WEEKS IN A ROW, and had a blast!

There's a lot of stuff to write about, but the tasty smells of dinner are wafting up to my room, and I think they get my attention first. :)

Cheated of Cucumbers! And Other Stories

2009-07-18T23:12:00.001-04:00

This post is broken up a bit, because I actually started writing it a while ago. But finally I came back to it. And I apologize for taking so long.

---Written Friday July 3rd---

Time for a post. It's been time for a while, a lot has been going on. I'm back in the hospital, have been since Tuesday. And, again, it's my last night here (if all goes as it's supposed to, of course).

On Monday, we went to the hospital to get my "labs" drawn. It was the easiest blood test I've ever gotten. The lady used a baby needle, which probably helped, since my veins are tiny. So that went pretty quickly. I'll be doing that twice a week for a long time (not sure if it's for the whole two years of my treatment, probably is), though we can go to other places outside of the hospital.

I spent my last day out of the hospital mostly outside. Rafi came over, and we walked on the bike trail along the Erie Canal (after mom attacked me with the sunscreen). Mom and Diana walked too, though they left later than we did.

Tuesday was a big, long day. I had to be at the hospital by 9:30 AM. I was going to the clinic this time, though. Which is where I will be going every week (probably Wednesday) for the next two years, for various things (chemo, pokes, check-ins, stuff like that).
We (my mom, Erek, and I) took the Silver elevators to the 6th floor, stopped at the first desk we found, got directed to the right place, checked in.
After she recorded my height and weight, a nurse led us to a little room. One of many little rooms, of which hospitals have PLENTY. We met Margaret, the other nurse practitioner, who is really awesome, and very nice. We talked for a while. She wanted to hear the whole story, from the beginning.
Finally, a crew arrived for my operations. I was going to get a PICC (Peripherally Inserted Central Catheter) line put in (the "super-IV" I mentioned in a previous post) and a bone marrow biopsy, as well as chemo injected into my spinal fluid. The biopsy would determine if I was in remission, and whether we could go on to the next phase of chemo (which would start as soon as we found out, in a few hours).
They had to put an IV in, to give me sleeping potion. That was a delightfully easy IV insertion. Yay baby IVs and talented nurses! Propofol, the sleeping potion, was given through my right hand. The lady giving it to me said it might burn a bit. Um, understatement. It made my whole hand ache a lot, and burn a lot, and to add to it, the IV leaked white stuff all over my hand.
But finally I went to sleep, and woke up, and had what just looked like an IV in my upper left arm (but with two tubes sticking out instead of one).
They gave us pizza, and we hung out for over an hour, until they got my biopsy results back. Good! I was in remission! If we stopped chemo now, the leukemia cells would come back, but they still call it "complete remission". At the end of my treatment, when the leukemia shouldn't come back, they'll call it "molecular remission".

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Continued on July 4th

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Ended up going to bed without finishing the post.

Anyway, after they determined I was in remission, I had to get the chemo nasties. Doxorubicin, Dexrazoxane, Vincristine. And later Methotrexate. But first I had to go down for an x-ray, to make sure the PICC line was placed right.
I was still feeling a little off, probably from the Propofol. While we were waiting (in a little room, because mom was worried about me catching something from the many other people in the waiting room), I fell asleep. It was kind of cool, it felt like my head wanted to drift up and back, even when I was sitting normally and not even trying to sleep.

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Continued on July 18th

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So, I've been continuing these posts on different days... It's just that I kept getting interrupted, and then I didn't pick them back up for a while. In this last case, for a much longer while...
Anyway, it's been so long that I can't remember all the details starting right from where I left off. And even if I could, there are just so MANY. So I'll do the best I can to give an idea of how these last few weeks have been going.

It turned out the PICC line was placed right, which we found out after we went back up to clinic for my chemo. Straight back to the same little room we had originally been in. I sat in my reclining chair, still exhausted.
The nurses came in, prepared the chemo IV bags, and gave me the lovely stuff. I don't think anyone put on that flattering smock/dress/papery thing this time.

Later that day I was re-admitted into the hospital, for my High-Dose Methotrexate. A big bag of yellow fluid that runs for 24 hours. It's a whole process though. There was other stuff they had to give me first to protect, and then after the 24 hours, they had to flush it all out. I had to stay in the hospital as long as there was still a certain amount of Methotrexate left in my system. Usually a few days.

That hospital stay was a lot different from my long one.

The main thing was this time I had a roommate. 'Cause I wasn't neutropenic! I was in a room on the circle around the nurse station, instead of slightly further down the hall.
I was glad I had the bed closest to the bathroom (furthest from the door), because I knew I'd be using it a lot (they had told me all about the many IV fluids I'd be getting). And with Winnifred, it would have been annoying for the other girl, me rolling past every 45 minutes, dodging chairs and beds.
Jessica, my roommate, was nice. I never really got to know her at all, though, since she was hardly ever in the room (I think she liked to hang out a lot in the rec room).
Erek stayed overnight there most of the time, sleeping on the comfier-of-the-chairs-in-t

he-room chair, which was able to be converted into a full-length bed.
We watched "Benny and Joon" with mom one evening (it was unusual, because she's not much of a movie person), and I loved it. Such a sweet movie.

During my stay I just felt really nasty. Thanks, chemo. But also, the doctors said that being taken off of Prednisone (my first cycle of Prednisone had ended the day before I was re-admitted) could make me feel like that too. My whole body was aching, I was tired, and just generally felt yucky. Didn't go out for long hospital explorations like last time.

My Methotrexate levels were close to low enough to let me out of the hospital on July 2nd. I think they were something like 1.7, and they only let people go when they're below 1.0 (I don't know what the units are for those numbers). But the nurses and doctors said the last bit can hang on for a while. By July 3rd, they were down to 1.2. And when they drew labs the morning of July 3rd (it takes a while for the results), which would determine if I could be out that night, they came out at 1.1. So close! But I would probably have been staying anyway, because there was another problem.
I had noticed that all of my aching was gone. Except for in my left arm, which was where my PICC line was. I really noticed it when Chrisanne, my nurse (and another really awesome one), was in doing something or another, and talking to us (my mom was there too). So she got out her measuring tape-ish stuff (kind of paper-like, actually), and measured it (the nurse from when the line was inserted had measured my left arm, and given us the measurments, for comparisons later), checking for swelling. We compared it to the original. In one place, it had swollen 1 cm.
I think the doctors were brought in, and it was decided that I should have an ultra-sound done, to check for blood clots. So eventually they got that set up, and Transport came and hauled me off.
Once I got back, we just had to wait for the results. There was a pretty good chance they had found a clot.

Ever since I had stopped taking Prednisone, and there was no more of that huge appetite stuff.
But I think Methotrexate also helped. Anyway, I definitely lost my appetite. I could hardly bear the thought of anything on the menu, or almost any other food. I managed to eat some simple foods and drink kefir.
That evening (July 3rd), Erek and I were poring over the menu, trying to figure out what I should order.
I finally decided on a veggie sandwich, with some sort of side dish and lemonade. I dialed 7-3663 into the hospital phone and listened to their hold sounds for a bit. And JUST as someone picked up the phone, Erek said something (I don't remember what) that set me into a HUGE fit of laughter. We had been joking around a lot earlier, even while trying to decide what to order, and this just set me off. I couldn't stop laughing. I desperately tried to communicate to the poor person on the other line that I was LAUGHING, not dying. I even managed to blame it on my brother too. And then I had to tell her my last name (which usually means spelling it out) and my date of birth. I just hoped she could understand me. Anyway, the insane laughter kept going, and I didn't feel the end coming, so I shoved the phone at Erek and asked him to order for me. He did. It was kind of a complicated order (since I'd modified the sandwich a bit), but he knew it well, because we'd gone over it so much.
When I got the sandwich, I really couldn't imagine eating it. But I decided to try a cucumber slice off of it anyway. And as soon as I took the first bite, I knew......... I could eat CUCUMBERS!
This was because: a) They tasted SOOO good (I've always loved cucumbers), and b) my stomach was apparently happy with them, unlike most of the other food I'd tried.
I promptly ate all of the cucumber slices on the sandwich. And was sad that I didn't have more (there were only 2 or 3). Erek and I had a great time joking about trying to order a whole plate of cucumber slices from the cafeteria.
And after fifteen minutes or so, I actually decided to try. I was really worried about having another laughing fit while on the phone, especially since somehow asking for only cucumbers felt ridiculously funny. But I dialed 7-3663 anyway, and waited. When someone picked up, I gave my name and date of birth clearly and calmly. And then proceeded to ask if I could have a plate of just cucumbers. She said, in a surprised, yet oddly calm way, "oh." And followed it with, "alright."
But after the "half hour or forty-five minutes" that she said it would arrive by had passed, I was slightly worried. After an hour and a half, I was more worried. Anyway, they never came. :(
But here's the thing. The next day, I tried to order them again, this time just as a special side with my lunch. My lunch came. But no cucumbers!!! And they were even printed in BIG BOLD LETTERS on the reciept. I was sad. I even called back, and after I gave her my last name, she asked if I'd gotten my lunch. And I explained about the cucumbers, and she was really apologetic, and said they'd send some up. I felt sort of weird calling back, but it was scary how much it felt like cucumbers were the only things I COULD eat. Anyway, they never came.

That morning, Cheryl had written on my dry-erase-board, "Methotrexate levels: .067!" Yes, I still remember the number.
It turned out there WAS a blood clot in my arm, and the PICC line would have to be pulled. Eventually, a Resident came and pulled it out. It couldn't be used if there was a clot in its vein. The line just sort of slid out. Almost a foot (yes!) of small blue tube appeared. Didn't hurt coming out, though my arm still ached a lot.

We hung out, went for a walk (I was feeling better. Better-ish. Not a LOT better, but better enough to go for a walk. You get the idea.). I wanted to show my parents the tunnel and painting, so we went in search of it. Found it! But it was locked. I guess because the Nursing School was closed since it was the 4th of July. So I showed them the courtyard, and then we all wandered outside the hospital.

That evening, all three of them (mom, dad, Erek) went back to RMH for dinner. I enjoyed some quiet time, and then started thinking about cucumbers. I was actually imagining their cold, juicy, crunchiness, and tastiness, and all their wonderful cucumberness. I didn't even try ordering them. I called mom and asked if there were any cucumbers there, but there weren't, so I asked if she'd be willing to pick some up at the grocery store. She said she would!

When they got back, it was mostly dark. We had asked around about where the best place would be to try and see the fireworks. The popular vote, especially at the nurse station, was the top floor of the parking garage.
At around 9:30 we got blankets and cameras, preparing to go. I got one of the cucumbers they had brought (YAYYYYY!!!!!!!), scrubbed it, and we headed out. Me wielding the cucumber, whole, and wonderfully dark green.
There weren't too many people out when we got there. Maybe 10 or so. The air was cool, it was a good thing for the blankets. But it was really nice. I munched on my cucumber, holding it like a banana. We could see fireworks from all sorts of places. The main ones we could see were the downtown ones. A few families with kids, mostly little ones, came out, and the kids were very loudly appreciating the fireworks. That was a lot of fun to hear, their shouts of happiness going along with especially spectacular explosions.
The evening was a very nice one. Another really good time hanging out with the family.
My last night there, for a while.

I'm going to leave off here, even though I'm 14 days past where this ended. I think 14 days can go in another post.

Cool Night Air Does Wonders On a Bare Head

2009-06-28T03:16:00.003-04:00

Now that I've posted last night's post, I can write one for today.
I'm using the one computer here, and the keyboard is really loud. I'm hoping that I'm not keeping anyone awake.
Anyway, being out of the hospital has been WONDERFUL.
Today was relaxed, and just nice. We worked on the puzzle for a while, and hung out. Played Settlers of Catan.

Peggy Popp, the weekend home-care nurse, came today. We went over which meds I need to take when, which ones are compatible with each other, and so forth. And she checked my vitals ('cause I missed that real bad), and we talked about how my heart rate has been going up randomly, even when I'm not really doing anything. So far, no worries, though if it gets higher than 120 bpm (which it was at earlier today), I should call.
Then she changed the stuffing in the hole in my chest. It was uncomfortable, but not unbearable. And now it's all fresh and nice.

I've met a few of the other families who are staying here. Haven't really talked to any of them a lot, but they all seem very nice.
There are about 8 little girls running around, though I'm not sure they're all together. It's sweet.

I've gotten used to throwing on my mask everytime I walk into a room with people I don't know.
Today I was sitting on a couch, trying on scarves, and this lady started giving me techniques for pinning them on without ruining the fabric (I hadn't even thought about pinning them, and I'd have been too nervous to anyway). It was really cool.

All five of us (Mom, Dad, Erek, Kate, and I) took a trip to Goodwill. I hardly fit into any of my clothes anymore, because I ended up losing a scary amount of weight during my month in the hospital.
Then, we went to the mexican restaurant again. And again, it was amazing.

At around 9:30 this evening, we decided to take a walk down the bike trail that runs along the Erie Canal, right behind the RMH.
It was SO nice. The air was cool, but not too cold, and it was really nice walking in the dark. We walked quite a ways, at a good pace. My legs were still a little stiff, especially at my ankles. I did some stretches today, though. I still don't think I can run, which is kind of scary.

Anyway, I'm really tired. This whole sleep thing is weird. I can't get to bed before 3 AM, and I can't sleep later than around 6:30. But I'm going to try (I'm too late for getting to bed before 3 this time, but I'm going to try to to do better tomorrow).
Ok, g'night.

Whoahhh, Out Of the Hospital

2009-06-28T02:47:00.001-04:00

**Note: I actually wrote this early yesterday morning (June 27th). Couldn't post it until now.**

Well, I’m out of the hospital!
I’m sitting in the dark, at 2:30 AM, at a table in the kitchen of the Ronald McDonald House (RMH). It’s kind of like a youth hostel, but for people with family members who are in the hospital, and Eric managed to wangle us a room. It’s where my family has been staying over the past month.
It’s a really nice place. There are comfy couches scattered all over the place (I’m not in one right now because I’m having a snack, and food isn’t allowed on the couches), and the kitchen is gorgeous. Our room is sweet, with musical instruments bordering the walls.

Anyway, there’s been a change in plans. Or, I guess Dr. Bruckner never completely decided on how the next week is going to go.
I’m going to go ahead and get chemo-nasties this Tuesday. Which means being re-admitted this Tuesday. Only 3-ish days out of the hospital, then.
I’m going in to get blood drawn in clinic on Monday. Then, on Tuesday I will get a bone marrow biopsy, something injected into my spinal fluid, and a “Pick Line” (not sure that’s how they spell it, I’ve never seen it written) inserted.
The “Pick Line” is, to my understanding, like a super IV. It goes into a vein in my arm and threads all the way up to near my shoulder. Weird! Normally they put it in while the person is awake (I hear it’s not that bad), but since they’re giving me sleeping potion for the biopsy anyway, they’re going to do it then. The line can last over 6 weeks, which is awesome, and they’ll be able to use it for the chemo. But apparently I might be able to feel it in my arm, unlike an IV. Well, I guess it sort of is going to be all the way in my vein.

We still haven’t resolved this port business. And we have time to decide, since nothing is going to be put in this week anyway. Gahhh, it would have been so nice just to have been able to keep my old port in. I LIKED it, it was working, and it was nice to me.

My cytogenetic (sp?) results (not sure that’s the right terminology) finally came back (it’s been about a month). I hadn’t mentioned it, I didn’t know much about it. Anyway, they came out good. My parents were INSANELY relieved. I didn’t realize it was that serious.

Moving out was an operation, but really not that bad. Erek and I packed up a lot Thursday night. It took a long time to get out today though, because of all the stuff that had to happen.
My nurse, Emily (who is very very awesome), wanted to make sure that my stuffing was ok, and we thought it was a good idea to have Beth, the wound care lady who came to change my dressing on Thursday, come and look at it again. So she came, and I was sure she would want to change the stuffing before I left. But she said it looked fine, and I was very happy about that.
Then Emily went over a sheet with an overview of my stay, diagnosis, everything that had happened (there was a decent list of scary stuff that had happened, and I have it, and I might type it up. I find it really interesting) with us.
We also went over all of the medicine that I will have to take while I’m an out-patient. Looong list. Later, I made a chart for myself to make sure I keep track of what pills I’ve already taken throughout the day. Uncharacteristically organized of me. :P Also, we’re going to get a pill box.

There was a doctor party, which doesn’t happen quite as often anymore (usually it’s just two or three of them who come in and talk to us in the morning). We asked some questions, got them answered, and I talked to Dr. Norman a little bit, which was nice. She’s really sweet.

Finally, I was really anxious to leave.
We had lunch there. It took us until about 3:30 to get out.
I went to the nurse’s station and said some more goodbyes, though I’m going back in 3-ish days, so it wasn’t really goodbye.
Once we left my unit, we had to go down to the pharmacy to pick up my Prednisone, which they had forgotten to order with my other meds.

I hadn’t ridden in a car for over a month. It was strange strange strange. But not too unfamiliar. We opened all the windows, and the wind blew on my bare head. It was wonderful.
Freeeeeeee!!!!!!!!!!!!
We drove straight to the RMH. Mom and Erek gave me a tour.
We went outside, and started to walk to the Mexican restaurant, which I had been wanting to go to for about 3 weeks. Then I realized that I needed to get together my meds, and figure out what needed to be taken when. I had a few questions about today’s doses, because a few had been missed while we were packing up. It took a while to get through to a doctor and figure it all out. But finally we made it to the restaurant.
It was SO GOOD. The owner was really nice, and mom chatted with him in Spanish for a while. We instantly loved it there. And there weren’t really any other people there, so I didn’t have to worry about wearing a mask (which would have been tricky to eat with).
When we got back to the RMH, Dad and Sue were both there. It was awesome seeing them.
This evening was sweet and relaxed. After a while Mom took a nap, and Dad, Erek, and I started a 1000 piece puzzle. But we soon discovered that there was part of ANOTHER puzzle mixed in (the pieces were significantly different, both in style and texture, so it wasn’t hard to separate them). Haha, we started to do both, and then realized that one of them was incredibly incomplete.
Later we discovered more pieces from a different puzzle altogether.

We decided to go rent a movie, before picking up Kate from the airport (her plane was coming in at around 10:30).
So we all piled into the Cabriolet (dad found this old black convertible somewhere a while ago, and it’s really awesome), and drove through the warm evening with the top down.
Picked up Kate (yay!!!), and drove home. We watched The Royal Tenenbaums.
And then we went to bed, and I couldn’t sleep, so I came out here with the laptop.
There is no wireless here, so I’m typing this offline. I’ll try to find a way to post it tomorrow.

Last Night Here?!

2009-06-26T01:16:00.002-04:00

Well. This is my last night in the hospital. That's a really scary thought. Today was around my 30th day here.
I took down all of the posters and cards from the walls this evening, since I'm leaving in the morning. It was definitely sad. I've been living here for the last month, and I didn't really mind it all that much. I tried to make it my own space, and in doing so, I became a little attached to it.
Not that I MIND getting out, it's just... strange.

Yesterday morning I got my port taken out. They rolled me, on my bed, over to the PICU, which is where they do stuff like bone marrow biopsies and spinal taps. And also remove ports. The surgeon who put it in was the one who removed it. They gave me the same white sedative that they used for the spinal taps. But first they gave me a little bit of clear stuff, and it made me feel really strange. For about 5 minutes, while they got stuff ready, I sat there feeling kind of loopy, almost like I was floating. Then they gave me the white stuff.
I woke up portless, with two IVs in my left arm. I had a huge wad of fluffy gauze stuck to my chest, with a clear bandage over it.

I was free of Winnifred after while, so Erek and I went and explored some more of the hospital. We were trying to find the tunnel again, so that I could show it to him, and also so we could take pictures. But we never found it.
We power walked through the halls, and outside.

It's weird, I'm having a really hard time remembering what else I did yesterday.

Rosie, the music therapist, came in the afternoon, and we did some really cool relaxation stuff.

Later, Tom and Hope came and played fiddle and guitar in my room. It was one of the most wonderful things that has happened while I've been here. I felt so alive as they played.

The decision making process for what to do about this port business has been very interesting. I'm going to try to get it as accurate as I can, but I can't promise. There was a LOT of information given.
Dr. Salloum, the surgeon, was very set on the idea of putting a Broviak in next week.
But yesterday we talked with Dr. Mullen, the oncologist who diagnosed me in the first place, and he had another option. He thought that we could use regular IVs for the next week, waiting until a good time to put in another port on the other side.
Today we had a conference with Dr. Bruckner, my main oncologist. She hadn't talked face-to-face with Dr. Salloum yet, and so she couldn't understand why he was so against putting in another port. Apparently, he REALLY didn't want to, he thought that it wouldn't work again. She said she'd try to talk to him today. She wants to go ahead and use IVs next week, postpone chemo for a week so the port-removal site can heal, and so the new port can sit and heal for a week before use.
So I'm actually planning on being out of the hospital for 10-ish days, instead of 3, before I come in for the 5 day intensive chemo.
Then we all asked a lot of questions of Dr. Bruckner, mostly about being an out-patient. I asked about what kind of places I should stay away from (sickness, basically. I have to try not to get the flu. I probably will have to wear a mask when I'm around lots of people). And if I could get a henna tattoo on my head (Kate is coming this weekend, and she's bringing henna!). Answer is yes!

Today, the hole where my port was was re-stuffed. A wound care lady came, and put this felt stuff with silver (silver!) in it into the hole. I won't give details, lets just say it was, and is, very strange looking. Not pleasant at all. I think it will only have to be re-stuffed a few times a week. Ugh, though.

The Zendarskis came to visit, and so did the Waymans. I gave a little tour of this floor, and we all hung out on the playdeck for a bit, playing air hockey and sitting outside. 'Twas fun.

I've been hugging and saying goodbye to all of the nurses I've had since I've been here. I love them so much! Every single one is so sweet, and I'm going to miss them. But I'll be back, and I can visit anyway, when I come in for clinic.
I stocked up on Mickey Mouse masks, when Cheryl came in to say goodbye. She suggested using them as slingshots. :D

Anyway, Erek is staying here. We packed up most of my room this evening, and now we're watching movies and eating soup. Why sleep during my last night in the hospital? :P

Where to Send Mail

2009-06-25T09:00:00.001-04:00

So, it looks like I'm getting out of the hospital tomorrow (but coming back for 5 days next week). I'm not actually going home though. I live two hours from here, and that's just not going to work. I've been living in Rochester part-time for the last few semesters, since my class load got a lot heavier, so it's not like I'm not used to being here.
I'll be staying in Rochester for most of this summer.
Some people have asked me about where to send mail, now that I'm going to be out of the hospital.
So here's the address I'll be staying at for the month of July:
293 Brooksboro Dr.
Webster, NY 14580

I'm not much of a morning writer, so I'll try to give an update later. :)

Possible Second "Bump"

2009-06-24T03:14:00.001-04:00

Whoah, so today there was news. Not so great news, actually pretty scary news.
My port, the thing they put in surgically when I first got here, has to be taken out tomorrow morning. Because the incisions never healed. It's been a month, and they never healed.
I was due to be re-accessed today. Which is a weekly thing. They take out the needles that go into the port and replace them.
So I was de-accessed for two whole hours, which was wonderful, and I'll write about that later.

When they went to put in the new needles (with the little black butterflies), they (the nurse and doctor who came to re-access it) got worried about the oozing that was still coming out of the cuts. And they thought they saw a hint of infection. They sent for blood cultures, and more people for more opinions. Called in the surgeon who put the port in. He didn't like the look of it, said he hardly ever saw the incisions go that long without healing. They talked about it for a while.
Came up with this plan: Tomorrow morning, take it out. The whole port. Use an IV to continue my meds. Still send me home on Friday, with a stuffed hole in place of the port (the idea of that kind of blew my mind).
On Tuesday, I'm going to get a Broviak put in, which is the other option for giving chemo. It's easier for it to get infected, because it's always open, which is why I got the port, but at this point it's less likely to get infected than my un-healed port. So, more surgery.
I'm really sad that I'm not going to be able to use the port. At first, I was nervous about it, because unlike the Broviak, every time I come in for out-patient treatment, I have to get poked. But today, when they re-accessed it, I realized that I don't mind it that much at all. And I was getting used to the idea. The nice thing about the port is that when I'm home it's completely healed over, and everything feels normal. The Broviak, on the other hand, always sticks out. No pokes, but stuff hanging out.

Now I'll talk about how awesome I've been feeling. I've had energy, I've been completely awake, I've been out and about, I've been DOING things, I've been happy, I've been just plain great.

Yesterday was beautiful.
Rafi and Sylvia came over, and mom accompanied us down to the "Specialty Shop", where I got to try on wigs.
As soon as I walked in there, I realized that I probably would NOT be walking out with anything to seriously plan on wearing to cover my head. They were so... styled. Nothing felt like ME. But it was an absolute blast trying them on. I tried on red ones, black ones, grey ones, strange styles, all sorts of stuff. We took pictures and laughed a lot. Then I got into the bin of free ones. They were not in perfect shape, and all of them were definitely meant for someone a LOT older than me. Those were the most fun to try on. And I left with five of them. Two salt-and-pepper ones, a short, grey, curly one, and two short, curly, red ones. The lady there assured me that she had plenty, and no one was taking them, and that I shouldn't feel bad for taking five. They're just so much FUN!

After that we had a tie-dye party in the rec room. Rachel, one of the awesome "Child Life" people, was organizing it. Basically, we cut up sheets into bandanna sized squares, and tie-dyed them. And some people dyed socks. Anyway, it was fun. Buckets with colorful water and soggy masses of fabric sat in my bathtub for the next few hours.
Meanwhile, Paige (another Leukemia patient), Sean (another patient), and Jessi (another awesome Child Life person) were going for a walk, and invited Sylvia and I to tag along. Paige and Sean were somewhere around my age, maybe a bit older.
We went down to the lobby and out one of the doors. Past the bus stop, down to the sidewalk. I had no idea we could just walk down the sidewalk. We walked almost half way around the hospital (at one point Sylvia had to go back to catch her bus). It was interesting, maneuvering Winnifred over all the cracks and curb cuts. We turned into a random driveway of the hospital, and wandered in through some random door. Jessi seemed to really know her way around. I was completely disoriented. This place is huge. She led us to this cute little courtyard, with brick paths and lots of squirrels, birds, and benches. It was fun getting Winnifred to roll over the bricks. We sat there for a while, talked a bit, and then headed back. Lots of strange hallways later, we got back to 4-1400.
Kind of drained of energy, I sprawled on my bed for a while. Then I got up and started rinsing out the tie-dyes. They came out awesome. I love tie dye for that. It looks so muddy and messy until you take off the rubber bands and un-twist/un-fold the fabric.

That evening, around 6 fiddlers from the Kanack School of Music and RPYO showed up, as well as a few other visitors, and we had a jam session. It was sweet, getting to play with people. I had hardly played flute at all, and then suddenly we were playing for at least an hour and a half. It was great.

Sooo tired out after that day. I thought I would crash, and sleep well that night. It sure felt like I was about to. But after everyone, including mom, left, I was pretty awake. I tried to sleep, failed, had a snack (Kefir and a bagel), and took out a notebook and all the writing utensils in my drawer (a LOT). I had discovered earlier that day that I had sort of lost my handwriting. It was really scary. My hand was shaky, the pen felt slightly uncontrolled, and my letters were really sloppy. I realized that I had hardly written anything for a few weeks. I felt really bad that I'd let that happen. Hand writing things has always been a huge part of me. I love to write letters, and I journaled regularly. I always loved the feel of the ink going onto the paper.
So I started to practice writing (!). I rambled on paper for a long time, and tried different angles. Even now, it's still shaky. So yeah, I'm going to work on that. :)
Cheryl, that night's nurse, came in at one point, and I was sitting cross-legged on my bed, bent over paper, writing. I was really enjoying myself, reuniting with the pen. I paused.
She was fiddling with Winnifred's buttons, and then said something like: "Well, y'know, I think Winnifred needs an attitude adjustment." Apparently he wasn't letting her do some sort of programming option. So an attitude adjustment is what he got. She turned him off, and then turned him back on, and he grudgingly agreed with her.
Anyway, we had some good laughs about that one. She stayed for a while, and we talked about all sorts of things. We decided that I should take some of the Mickey Mouse masks home, some for me to keep as mementos, others, we joked, for me to give as birthday presents.
We talked about favorite words, after she noticed the poster that TuneScape and the Shinglehouse Festival sent me, with all those strange and cool words written on it (strange and cool words are one of my things).
She told me about how much she loves Biology, and the classes she had taken in college, and we got me all excited all over again for the Bio class I'm taking in the fall.
We laughed a lot over random things. I felt so happy and light, and not tired.
At around 2 AM I went out for another snack, and then I finally got some sleep.

Up at around 6:30 this morning. Just in time to order breakfast, which was top priority.
It was sooo good, I was so hungry, and I felt wonderful afterwards.
And I had a plan. The nurses had told me there would be a gap between 10 AM and Noon today, where I wouldn't be given any antibiotics through my port. And I was due to be re-accessed. Which means being de-accessed first. Which means freedom for two hours. Which means a shower free of biohazard bags and tape and worries, and all that stuff. And then I had all that time before I had to be re-accessed. So I thought it'd be really fun to go exploring around the hospital, both inside and out (though mostly out, because it was such a nice day), without Winnifred. I'd gotten a taste of it yesterday.
So, at 9:45 I got clean clothes and towels ready, Emily (my nurse) came, and I was de-accessed. It took a while to get the site cleaned up and find out if I could get the stitched up part wet, and all that. Finally it was decided that I didn't need any of the dressing on at all. So I really had a free shower.
Rafi and Sylvia showed up while I was in the shower. I had to make sure that my head was covered, and that I had a shawl or something to cover my shoulders, because the Vincristine really increases sun sensitivity, and the nurses wanted to make sure I didn't get sun burned.
So I put on the fuzzy pink hat that Victor brought me, and grabbed a huge, beautiful scarf that Pamela sent me, and signed out.
It was a blast, leaving the hospital with just my friends, and exploring. I felt like I was playing dress up, wearing the pink hat, and having the scarf tied around my shoulders like a cape. It was fun.
We walked down the same sidewalk as the day before, and turned into the same driveway, but this time we tried to figure out how to get into the playground that was locked. There were people in there, so we thought we could find a way from inside somewhere. We wandered for a while. Found the same courtyard that I'd sat in the day before. Didn't stay long. We went back in through a random door, and ran into Eric, the amazing social worker who has been by my family's side through this whole thing. He does things like: being awesome, arranging for the room that my family has at the Ronald McDonald House, knowing lots of things, being awesome, did I mention being awesome? Anyway, we told him we were looking for adventure, and he showed us to an inconspicuous little door that led to a flight of stairs going down. He told us to take that tunnel, and we'd get to the nursing school.
The tunnel was amazing. It was entirely painted grey, and had a low ceiling, and all sorts of pipes running along the walls. The hallway was slanted slightly down.
There was this random painting on one of the walls. It was very colorful, and had lots of celtic knots and a sort of celtic knot bird. Completely out of context. Made me very happy. We tried to take a picture, but Rafi's phone died, and I had (foolishly) left my camera in my room.
We ventured down the tunnel. It was very warm down there, and wonderfully eerie. At the other end, there was a staircase leading up.
At the top, the door opened into this fancily carpeted entry-way. The nursing school. There was a big, high-ceilinged room with an oriental rug and a baby grand piano. Several students were eating lunch and studying. We went out the doors and into another courtyard. Saw a balcony somewhere over the building we had just exited. We went back inside, and tried to find a way to it. Going up the little carpeted stairs, I tried to take them two at a time. And collapsed. It was really strange. I didn't trip, I just sort of ended up on the floor. A little disturbing. I wasn't tired or anything, I guess my muscles just gave out. Sylvia had to help me up. I really don't like the idea of that sort of weakness. I felt completely fine.
We took the elevator to the top floor. Found another staircase, took those. But they dead-ended at a locked door. No balcony there. We wandered the carpeted halls, past open office doors. A couple of people asked if we needed help finding something.
We tried several different staircases, never found the balcony. I had no problem with the stairs! Heh, a big improvement from before I even got into the hospital (that's one of the reasons I got a blood test in the first place).
I needed to be back in fifteen minutes, so we started to make our way back. We exited the nursing school, crossed the street (we'd crossed under it through the tunnel), and ambled back to the hospital. Going up a grassy hill, I felt that weakness in my legs again. Was very careful not to fall.
That outing just made my day. We took the stairs back to the 4th floor, and I was hardly tired.

Then came the re-accessing, which was when I got the bad news that I started this post with.
Since I've already written about that, I'll skip over it.

Sylvia and Rafi were in the rec room, because of all the doctors, nurses, and the surgeon in my room. When I was free, I went out to join them. We did a puzzle on the air-hockey table, and listened to music from the jukebox (which has a lot of stuff on it, it's really cool). I was a bit shaken, but felt happy to still be with friends, and doing a puzzle. Which I get addicted to doing really fast. Sylvia had to go. Rafi and I finished that puzzle, and started another one. Nearly finished it, and then he had to go too.
I went back to my room, and kind of crashed. I had dinner, which was good, and then, at around 7, I fell asleep. And it was the deepest sleep I've had for a long time. It was really strange, and kind of cool. I dreamt that I was given anesthesia. And so I felt like I was given anesthesia. And I wonder if that is why it felt like such a deep sleep. Haha, I don't know.
Anyway, I had some other dreams, strange ones. Which I've been having lately. Can't remember them very well.
Woke up at around 10. Mom had gone home, and everything was quiet. I actually tried to go back to sleep, but couldn't. So I had a snack (because that's what I do), and did stuff (can't remember what, not much). At around 11 I decided to watch a movie. So I went to the fridge to get the last food I'd be able to eat until tomorrow (because they're giving me some sort of anesthesia, I can't eat anything past midnight). I watched "Hitch" on the hospital TV. Part way through, I realized it was midnight, and quickly ate my soup.

And now here I am. I think this is the first time I've written right up to the moment.

Cheryl has come in a couple of times while I've been writing this. We had some more random conversations. I really like talking to her.

Well, in around 6 hours I'll be deportified. Yikes.
G'night.

I Saw a House Today

2009-06-22T01:02:00.001-04:00

It's been a week! I didn't realize I'd gone that long without writing.

First bit of news: It looks like, if all goes well, I'll be out of here next Friday. That's only for 2-5 days though. Then I'm back in the hospital for 5-ish days, for another round of the nasties (chemo nasties, that is).
But man, it's crazy realizing how soon that is. This Tuesday is the 4 week mark of my stay here. It does NOT feel like it's been that long.

So, I'll try to remember how this week went. I have a feeling there's going to be some generalizing, since some of it is kind of a blur.
Until around Thursday night, I kept on feeling lousy, sick, exhausted, and overall not-so-good. I stayed in bed most of the time. I had the wonderful company of family and friends, many of whom I'm sure I fell asleep on (not literally, of course :P ).

I got another spinal tap on Tuesday. Had chemo injected into my spinal fluid. That operation involved being transported, on my bed, to the ICU, where they gave me sleeping potion (fun stuff!).
The doctor took a while to get there, so we had a fun chat with Laurie first, who is awesome (I forget exactly what she does, but she's on my team of doctors, and participates in the doctor parties).
I was super happy to find out that my port was due to be re-accessed on the same day, which meant they could do that while I was asleep. It's done every week. I've only experienced it awake once. Basically, they take out the little black butterflies that have needles stuck into the port in my chest, and replace them. Which means two big pokes.
But this time the big pokes were done while I was asleep. I felt so sneaky for it.

I can't remember which evening it was, but one evening this week, I suddenly felt better. It was weird. I realized that I wasn't in pain, I was awake, and I actually felt pretty good. Mom, Dad, Erek and I played two games of Hearts (a card game) that night.
And the feeling has more or less lasted.

My counts are going up. Which means that I'm making neutrophils, red blood cells, AND platelets. Awesome!

I absolutely fell in love with the Minestrone soup that someone sent over. I don't think any kind of food has ever made me that happy before. Which is kind of strange. And I've been having cravings for green beans. I can't really stand the idea of cookies or sweets right now. My mom is super happy about all of it.
And, I didn't get a menu after I got back from the PICU last week. I didn't even ask for one. I basically had it memorized, and could order without needing it (and I ate a lot of soup anyway). But today I decided that I probably had forgotten about something, so I asked for a new one. And WOW, it was DIFFERENT! It had this whole section with stuff like tofu ravioli, Chile over rice, and eggplant parmesan. And just overall, it was huge.

I was disconnected from Winnifred (my IV pole, in case you missed it in previous posts) for about 4 hours today. So mom and I took a walk. It was so weird, not having to pull anything along with me. I'd gotten so used to it, I felt a little imbalanced at first.
For the first time since I've been here, we went down to the lobby, and went outside. Not just the "playdeck". Out, in front of the hospital. I didn't even know I was allowed to do that. It was amazing feeling the breeze on my bald head. I got to take my mask off, and enjoy the sunshine.

Some people in the halls stared, I guess at my hairlessness. Or maybe it was the Mickey Mouse mask... It was kind of amusing, and a little disturbing.

Speaking of hairlessness. Every time I look at a reflective surface, especially windows from far away, I remember that I'm bald. It's weird, forgetting like that. It feels pretty natural by now.
I haven't worn any hats or scarves or wigs yet, besides trying them on (I haven't even gotten my complimentary wig from downstairs yet (because I haven't asked. Tomorrow we're going to.)). But then again, I haven't been out in the world yet, besides right out the front doors. It's going to be interesting, seeing how I feel about my head once I'm out of here.
There's still stubble there, though it's coming out. Someone suggested lint rolling my head, which I think is hilarious. Apparently it's been done. I'm very tempted. But it's fun to pet my head!

Today I got stitches in the upper incision for my port, because it had gone three weeks without closing up at all. So a surgeon came up to my room a few hours ago, poked me with a syringe full of numbing stuff, and sewed me up.
Yeah, I've kind of gotten used to this stuff.

My room is bubbly. They put a little humidifier thing in, because it's so dry in here, and it bubbles away softly all of the time. Kind of like being in a fish tank. It's a sweet sound.

I hardly slept at all last night. Dad and I watched a movie until 2 AM, and then I was hungry (I can thank Prednisone for the appetite). So I went out to the fridge, heated up some soup ( <3 ), and took it back to my room. Ate in the dark, slept a bit, had some weird dreams. Woke up again, hungry. ANOTHER trip to the fridge, drank some Kefir (yummy yogurt drink), had some more soup. It was an interesting night. Up at 7 AM, breakfast, and finally, I slept until around 11:30.

Mom, Dad, Erek and I took a lengthy walk today, exploring the hallways. We went up to the 5th floor, and just wandered around. We ended up in the University of Rochester section, with narrow hallways, lots of research labs, and different views out of the windows (Me: "I haven't seen a house for so long!"). It was fun reading the signs on the doors, with their intimidating warnings ("Do not enter, do not knock, do not disturb").

Dad was up here just for the weekend. Erek flew back to DC today, though he'll be back in a few days. So tonight it was just mom and I, which hadn't happened yet. We had a nice, relaxed evening, with me getting the dressing for my port changed for the third time today, and stitches.

I'm back in normal clothes! Normal, as in, pajamas and a tank top. No more hospital gowns.

Well, I'm going to go have some soup, and then hopefully get some sleep.

The First Big "Bump" in My Treatment

2009-06-14T23:56:00.001-04:00

Oh jeez, I'm really behind.
Lots and lots of stuff has happened since the last time I wrote a real post. A lot of junk, but also some really good stuff.
One of my excuses for not writing is that my hands hadn't been fully free until a few hours ago, because of several things, and it was a real pain to type.

OK, so I had a pretty lousy day on Thursday. I spiked a fever Wednesday night, didn't sleep much at all, had burning stomach crampy things, felt nauseous, and at some points was shivering hugely and uncontrollably. Yeah.... overall, not too fun.
For part of Thursday I felt ok. Then in the afternoon I started to shiver again. My teeth were chattering CRAZY loud, and I was shaking more than I ever have before. My fever got to about 102.6 F.
Sylvia and Bronwyn were there to hold my hands and give support, which was wonderful. At one point I found it highly amusing to sing through my chattering teeth, getting these rhythmic long notes with fun textures. But for the most part it was just really frustrating, having my body doing those things without my permission. So that went on for a few hours. Finally a bunch of doctors came in, and "listened" with their stethoscopes (like they do all the time), and talked about stuff (can't remember what).
I got to use a bedpan, which was an experience in itself. Not really fun. Very weird. Definitely uncomfortable. Not easy to do.
They didn't want me to get out of bed. My blood pressure was really low, and my heart rate was really high, and I was still shaking. They told me they didn't want me to pass out.

After some more talking, and a couple of re-visits from the doctors, they decided to take me to the PICU (Pediatric Intensive Care Unit). They were pretty sure I had an infection, which is not a good thing at all.
They said I might not get this room back. So we actually had to pack everything up. Well, my family did, I wasn't allowed out of bed.
The walls appeared again, and the surfaces were cleared, and everything was put into "Personal Belonging" bags. Sad!
They wheeled me down a few hallways, through some sets of doors, and into this glossy, shiny set of halls. No more paintings of squirrels eating peoples' picnics here. Even the ceilings had dark glass and little light patterns. Very snazzy place. My new room was much bigger. It was cleverly shaped and crafted, with interesting paint designs. Even the TV screen was fancy.
The nurse/doctor ladies/dude (three main ones) were really really nice, and cool.

One of the first things they did was put one of those clear in-the-nostril oxygen tubes around my head. It made me feel sooo much like a patient (as if I didn't already). But the gentle air flow was nice (even though at that point I didn't really need it).

I had to have an arterial line put in, so they could constantly monitor my vitals. The idea freaked me out. They were going to stick an IV-like thing into the artery in my wrist?! Yeah, they were. Even one of the doctors said it would be awful. I thought she meant "awful" as in painful. I asked about it. Turned out she meant "awful" as in "really annoying". I relaxed a lot after that. "Annoying" hardly bothers me anymore.

So, the dude (really nice guy, fairly young, can't remember his name) got all his equipment ready, put a blanket under my arm to protect the sheets, and every nurse/doctor gloved up. He syringed (is it a word? It is now.) some numbing stuff into my wrist. He tried to put the line in twice on that wrist (my left one, so that I could keep my right hand free). The first time just didn't work. The second time he got the tube in, but when he tried to put the wire in something exciting happened.
>Warning< If you don't like to hear about blood stuff that is kind of gross, you might want to skip over the next few sentences.
I wasn't really watching, but I felt a small fountain of blood LAND back on my hand. It had actually SQUIRTED! And I have NO clue why this didn't bother me. Instead, I found it really fascinating. I knew arteries had lots of pressure, but I'd never seen it (or rather, felt it) in action.
Anyway, they gave up on that wrist. Moved everything over to my other side. Numbed my right wrist. Got the IA (I think that's what they're called) in, finally. Relief.

So here's a crazy thing. There was something about my veins stretching, shrinking, and doing some weird things, because of who-knows-what (ok, I just can't remember). So they speed-pumped roughly two and a half gallons of fluid into me. Gahhh, I felt sooo puffy, over-full, and weighed down. It was harder to breathe. My right lung (I'm pretty sure that's what it was) started hurting, and made it even more painful to breathe.
So yeah. I slept there that night, but not very well and not very much. The overnight ICU (really PICU, but they kept calling it the ICU) nurse (one of the ladies who was there when I got there) was really sweet, and super cool. Since it was the ICU, she only had one other patient (a baby who is apparently very cute), and she spent the night doing paperwork on the other side of the glass in my room. The doors of my room were glass (though there was a curtain for when I used the commode (another interesting new experience)).
I was really weak. It was hard to stand, because my legs felt achy and jelly-like. It would have been very hard to get across the room to the bathroom, even with help from a nurse. I hated feeling that helpless.

The next day (Friday) was long, but I started to feel better. I stayed in bed all day (of course).
People came to visit.
Claire, Sue, and Betty came in the morning. Claire played part of her senior flute recital (which had been the evening before) for me, which was really sweet and really awesome.
We hung out for a while. They (the moms, (mom, Sue, and Betty)) went for a walk. Eventually they had to go. We had some family time.
At one point, Dan (from the Rochester Contra dance) came and hung out for a while. It was nice having visitors while I was in the ICU.
Even some of the nurses from 41400 came and visited, which was really sweet.

That evening they pronounced me stable, and said I'd get to move back to 41400 that night.
My arterial line was going to come out. And for some reason I wasn't excited about it. Once it was in, I liked it better than the blood pressure cuff squeezing my arm. But out it came, and I couldn't even feel it when she slid it out. The nurse put pressure on my wrist for over five minutes, to make sure it stopped bleeding. It didn't really even bleed that much. Then I got a pressure bandage (just a stretchy piece of really sticky bandage, with gauze underneath).
We packed up our stuff again (much less this time, and they even gave us a cart), and they wheeled me out. It was nice to be going back to my unit (and it turned out I got my old room back!), but for some reason I wasn't super excited. I dunno why... I guess I kind of liked it in the ICU. But of course, I didn't need to be there, and other people did, and it would have been silly for me to stay there.
I did get a warm welcome when I got back. The nurses seemed really happy.
My room felt so small after the ICU! I even felt a little claustrophobic.
So I'm all moved back in now. And I AM happy to be back.

Yesterday (Saturday) was kind of a lie-low day. People visited. I can't even remember what I did all day. My lung started feeling better. I had some stomach crampies at some point, I think. I was able to stand up again, gradually getting stronger.

Oh! Yesterday, I was sitting on the loo, and I ran my hand through my hair, and.... more hair than usual came out! It was so exciting. I started pulling gently, and it just sort of slid out. I called out to whoever was in my room, and as soon as I was decent I had them come in and watch. I was overly excited. I know a lot of people would have been devastated. But I had been waiting for this.
I spent the next half hour sitting in my room with a bucket on my lap, sliding my hair out. It didn't really come out in patches, like they said it would. Instead, lots of strands would come out together. It didn't even really look like it was thinning, and I didn't get obvious bald spots.
Eventually I got tired of doing that. It didn't come out a lot on its own, so I didn't have to worry about making a huge mess all over the place. It did become a bit of a habit to run my hands through my hair and pull it out, though.

Today (Sunday) has been pretty good. I'm feeling a lot better. I got out of my room, walked around a bit, had visitors.

Very exciting event: I cut my hair, in preparation for shaving. It was sooooo much fun. I've been wanting to do it for a while, but never got up the nerves.
I got a pair of scissors and another bucket, and went at it. My dad held a mirror for me. My whole family, and Bronwyn, watched. I sat on my bed, and just took random chunks out. The scissors weren't great; they were just whatever the nurses had on hand. But they worked.
I gave myself funky layers, then merged it into a spiky pixy cut (my hair was especially good to spike, because I hadn't washed it for a while). We teased it into all sorts of strange shapes, and took lots of pictures, and had a blast. And the best thing is, I LOVED how it looked. I really wish I'd gone for it a long time ago.
Then my dad got out the buzzer, and started to give me a mohawk. But we didn't charge the shaver enough, so I have a sort of half-a-hawk now.

This other patient down the hall, a seventeen-year-old girl named Julia, has been wanting to know how I've been doing ever since she found out I was being taken to the ICU.
She's INCREDIBLY sweet. Her dad is too, and has become fast friends with my parents. They've been getting a lot of food brought to them too, more than they can eat, and he's been bringing it over for us. It's just been unbelievable how sweet and caring they've been.
Julia had a sort of tumor growing on her chest, and had to get some major surgery done a little bit ago. She seems to be recovering nicely. She's going home around Tuesday. She has come over for brief visits a few times, and today she gave me a beautiful painting of flowers that she painted for me while she was here. I'm going to make her a friendship bracelet.

I'm getting an ultra-sound (a kind of x-ray thingy that is interactive, or something like that) of my legs tonight, to check for blood clots. My feet are really puffy and funny looking. They think it's from all the fluids, but they're going to check anyway.

I sort of gave up on wearing real clothes (aka, my pajamas and a tank top), since the whole ICU episode. It's just so much easier to wear a gown.

I have a collection of disposable oxygen sensors stuck to my window like little electronic bug things. They go around one of my fingers, and plug into a little machine, measuring how much oxygen I have in my blood. When it gets too low, the machine beeps, and I have to take some deeper breaths to bring it back up to the mid-90s. I was using that during my whole time in the ICU, all of yesterday, and some of today. That was what was making it hard to type, even once the artery line was taken out. Finally got to take it off today.

My belief that all hospital food is bad (or at least semi-bad. I have had some good things here) has been washed down the drain ever since the default meal they brought me for dinner today (they bring food to everyone who doesn't order, and it's basically random).
It was stuffed pasta shells with amazing sauce and lots of goodies packed inside. And it was AMAZING. I wasn't even all that hungry, so I can't use that as an excuse. They still sent me super-soggy-green-bean-del

ight though, so don't worry, they haven't completely turned around.

I'm still not feeling great (I haven't felt great for a long time). My stomach is complaining, I have a bit of a headache, and I'm sleepy most of the time. But this sure beats Thursday.

I'm going to leave off for now.
Keep on being the amazing people that you are, know that you ARE amazing, and don't completely write off the idea of giving yourself a hair cut. It's so much fun, and you might like how it turns out!

The Clock In Here is Slightly Crooked

2009-06-08T00:30:00.001-04:00

So, it's been a while since I wrote last.
I can't find my nifty chemo calendar, and I can't quite remember, so I'll have to generalize about the last few days.
I got "big" doses of chemo Wednesday, Thursday, and Friday. The Vincristine was bright yellow and probably caused the nasty mouth sores that I had over the next few days. Dexrazoxane and Doxorubicin probably also helped in making me want to do nothing but sleep and look at my sheets for two days.
So yeah. That's about what I did. Exciting, huh? But really, I did feel pretty yucky, and I probably wasn't the most lively person to visit.
Good news is that I'm not getting any more "big" stuff for a few days (someone said it wouldn't be until the 16th, but I'm pretty sure it's sooner than that).

Highlight (from before the stuff kicked in): The flute choir that I play with at the Eastman Community Music School came HERE to practice. It was absolutely amazing. On Wednesday at 5:30 PM, Sophia (our conductor/teacher), Christina, Lucy, Victor, Kerry, and Melissa came trooping up to my door. We all went over to the lounge-ish place, set up our stands, put our flutes together, and serenaded the fish (in the fish tank, yeah). It was so wonderful getting to play with them (it was our last rehearsal this semester).

Ok, so I know you've been waiting. The dinos in the IV fluid. Overall reaction: "What is THAT?!" To which I reply: "Oh, that's my dinosaur incubator." And they say: "Ohhh."
But I think it was the pharmacist who was the most confused by it.
Some people would look at it for a bit, try different angles, give it a squish, and finally ask me about it. Some poeple have suggested other things to try too, like sea monkeys, fish, and other hatchable fake critters.
Anyway, I took it down on Friday (?), because I was feeling nauseous, and every time I looked at it I would feel even more nauseous (I don't know why...). But I'm planning on trying something else soon.

During the last few days I didn't eat much. Mostly because I was afraid I wouldn't be able to keep it down (I only failed once!). And then someone sent some AMAZING soup (yesterday? The day before?), and I got my appetite back. And THEN the home made Chinese food came today. I hadn't eaten a full meal for days, and it was amazing.

I finally took a shower today. I (obviously) didn't feel up to it the last few days, and honestly, I didn't really care. But then I woke up at around 4 AM this morning, feeling blechy and dirty and gross, and almost took a shower right then. But showers are complicated when there's a mass of bandage on your chest that you're not supposed to get wet. So I didn't actually take one until late this afternoon. I feel human again.

I've been wearing these bands that go around my wrists, called "Sea Bands", to help with nausea. And I think they really work (sooo many people have said they do, too). Or maybe I'm just done being nauseous for now.

Today one of the "incisions" they made to put my port-thingy in kind of exploded. Ok, it didn't really explode, it just opened up and bled a lot. Didn't hurt much, luckily. Some different people came in to look at it (doctors, a surgeon, nurses), and then one of them put another liquid bandage over it (so cool. It's roll-on, feels kind of like glue, and dries clear). I think it might have happened because I tried to shoot hoops with the basketball yesterday. Right. Guess I'll have to let it heal a bit more before trying again.

Bronwyn is flying in from Illinois tomorrow. I'm SUPER excited. I haven't seen her for so long, and I'm honored that she's making a special trip out to spend hours in a hospital with me.

Is it ok that I write mostly when I feel good? That might make it seem like I always feel good here. It's just that when I don't feel good, I generally don't feel like writing.
Also, I find it a little crazy that I haven't mentioned a word about this in my paper journal. I haven't written at all in there since I got here. And I've been consistently journaling for years. I feel like these posts are doing the same for me, even more maybe, than pens would. Which is completely different from what I would have said two weeks ago. I guess I really need people to read it, and once I've written it once I can't do it again.

Feeling a little dizzy and stomach-achy, so I think I'll go try to sleep it off. G'night.

Dinos in the IV Fluid

2009-06-03T00:50:00.001-04:00

So, I set up a bit of amusement (I guess you would call it a prank) today, with the help of Rachel, Erek, and a few nurses. Rachel sent me an impressive envelope full of stuff. It was awesome, and made me laugh a ton (thanks Rachel!). Included was a package of expanding foam dinosaurs in little capsules (just add water).
I thought it would be fun to have a big dinosaur in my IV fluid for the doctor party tomorrow morning (the doctor party is what I call "rounding", a morning meeting in my room with the group of people who really influence what goes on with my treatment. This meeting is headed by Dr. Bruckner, with a sort of commentary from Tina (awesome person!)).
But of course I couldn't put a dinosaur in my ACTUAL IV fluid...
It turned out that right when this idea was forming in my head, Heather (one of the many really cool nurses) was changing my IV fluid.
Apparently they needed to adjust the amount of Dextrose in the mixture, so she was going to get rid of the bag that was currently going. I asked if we could keep it. And told her about the idea. She got all excited, and brought tape and scissors for us to use.
Much later, Erek and I were in the bathroom, emptying the old IV fluid (salt water, basically) into the sink (we had inserted the capsule, through a slit we had made, directly into the fluid, but it wasn't expanding). We re-filled the bag with warm water (just as the dinosaur package suggested), and added a new capsule. That one expanded nicely. I put three more in. But they kind of floated, and weren't too obvious. So, after telling Jamie (the night nurse) about the plan, I asked if she could think of anything blue that we could put in there. About half an hour later she came in with a bottle of blue Gatorade and a large syringe.
Now an extra IV bag hangs off of Winnifred, containing foamy dinosaurs and blue fluid.
Apparently Heather requested to be my nurse for tomorrow morning. She seemed really excited about all of this, and wanted to be there for the doctor party (all of this is mainly for them).
I really hope they notice!

So. Today the chemo included 4 chemicals, three of which were completely new. These came at around 5 PM. Two nurses were there, Heather and another one (can't remember her name). Heather put on this insane suit made of light blue papery material, rubber gloves, and a mask with an eye shield attached (clear piece of plastic). We complimented her on the new fashion, and she agreed that it was simply smashing.
One of the chemicals (Vincristine) was added to my IV line through a little syringe. They had to make sure it was inserted over the length of one minute.
Next was a chemical starting with "Dex," which would protect my heart from the Doxorubicin (which would be next). It was in a cute little IV bag.
Finally it was Doxorubicin's turn. Red (like cranberry juice), foreboding (with the biohazard symbol on its container), and coming from another cute little IV bag, Doxorubicin slid through the tubing and into my veins.
It took about 45 minutes for all of that to happen. After everything they gave me another cute little IV bag full of stuff that would prevent the nausea and other things that were likely side affects.
Anyway, I never really felt any different. One more round done.

Raymi finally got to come visit today! So did Alex (I hadn't seen her since we first met, around 5 years ago), Jane, Rafi, and Diana. That sounds like a lot, but really it was pretty relaxed.
I went to the "activity" out at the playdeck, which was paint splattering. Spinny style. We (one other patient and someone who does the activities) taped four huge pieces of paper to the floor, filled Styrofoam plates with paint, and put on white plastic smocks. Then we each grabbed a wooden top, coated the edges with the colors of our choice, and spun the tops on the paper. Paint flew everywhere, and it was really fun.
I met a few other patients. One of them was going to college in one of the cities a few hours east-ish of here (Syracuse, Binghamton? Can't remember...). Not many people came, though. We played Uno after our knees started hurting too much.

I've been having a hard time believing that I've been here for a week. Man, it flew! Sure, it feels like forever since my life was "normal", but it also feels like I've hardly been here at all.
It's sad thinking of what I would have been doing this week, and the next... I'm missing my last dance performance ever, which is next weekend.
But I've accepted that this is what I'm going to be doing, and I'm moving on.

You Can't Have My Vitals

2009-06-01T01:07:00.000-04:00

"I'm just here to take your vitals" --Cheryl (the night nurse)
"I like them. You can't have them" --Me

Erek (one of my brothers, for those of you who don't know) and I were just watching Wall-E, until the silly hospital TV/movie/internet/other device stopped working (well, it still worked, it's just that it was kind of in slow motion, and was really hard to understand). So now Erek is downloading it, and it's got 14 minutes left (oh, now it has 15 minutes left. Time works strangely in hospitals, as I've mentioned before. :P ).

Yesterday and today have been pretty laid back. No hauling off to get poked under sedation, no big doctor parties in my room with question-and-answer sessions. Chemo started Friday, but it wasn't anything big and mean and un-comfy. But it DID kill cancer cells! I've been getting that stuff since then (three days, I guess). The first day of the next "phase" is tomorrow. That phase is 4 weeks long, called "Induction". It's when the stuff with more side affects starts. But at least the first time I'm given that is around 9 PM tomorrow, which they said is usually best for people.

I finally went out to the "play deck" yesterday, with dad, mom, and Erek. While mom ate lunch, the guys played basketball, which was quite fun to watch. I tried shooting a few hoops, but my port cuts hadn't quite healed, and it didn't feel very good. It was just really nice to be outside, partly in the sun, with a nice breeze.
Kara came out onto the deck and we actually got to hang out, which was awesome. She brought tons of movies, which I'm slowly working my way through (ok, I've only watched one so far (The Corpse Bride), but I'll get there eventually).
I found out that I can play both Foosball and Air Hockey. So Erek and I played each of those a couple of times. I discovered that playing Air Hockey with my right hand (I'm right handed) was painful, but that I could actually play better with my left hand all around. So that was fun, and I finally beat dad too. :)
The Womaks visited today, which was awesome. We all chatted for a while, and took pictures with Winnifred.
I slept until around 2 PM today, which was wonderful. It's not like I got tons of sleep, though (and I didn't stay up very late). Another discovery I made is that I wake up when the door opens and the nurse comes in. And that is NOT very loud. So I got woken up a lot (not at all her fault), and had to go to the bathroom a LOT (continuous IV fluids does that).
I took a shower today, the second one since I got here. It was a bit of an operation, covering up the IV equipment. The nurse (Cheryl) unplugged me from Winnifred, cut open a medium sized plastic bag (which was red, and said "Biohazard" on it), and taped it over the port, bandage, and tubes. We laughed at how I was a biohazard. It feels so good to be clean.
Raymi (my other brother) flew in from San Diego yesterday. But the problem is that he's got a cold, and can't visit yet. Sad! Apparently he hung out at the gaming store for a lot of today.
Someone has been playing pop music on the jukebox in the rec room for several hours. So I went on Pandora and blasted the speakers (heheh, not really) with Niall Vallely (an awesome concertina player).

Anyway, these are just some random tidbits, since I don't have any big exciting events to write about. :)

My Arms are Free of IVs

2009-05-29T23:40:00.001-04:00

Not writing too much tonight. I'm going to try for an earlier night, so that maybe I'll be more awake during the day.
And also, I just wrote a bunch, and somehow lost it.
Today I got a spinal tap. They drew some spinal fluid and some more bone marrow. They also injected the first chemo stuff into my spinal fluid.
They took off all three of the IVs on my arms, so now they're just using the big one. Today stuff like the usual fluids (salt water and glucose), two units of blood (one quart total), and something else that I can't remember was running through the lovely clear tubing into a vain near my neck (not necessarily at the same time).

Winnifred now has a flamingo wrapped protectively around his neck. Her name is Gladys. I think she's there to keep me from jerking him around too much. But she's pretty cool, so I haven't given her a hard time about it. Also, one of the nurses suggested decorating Winnifred even more. I'm thinking something like a feather boa, if it doesn't get in the way too much.
I feel kind of bad that I haven't been outside for three and a half days. There is a deck, but whenever I feel like going out, it's too late (they close it fairly early, I don't know why). I'm definitely going outside tomorrow, if I can manage.
I hope this port stuff heals up soon. It hurts a lot. I took Tylenol for the first time ever yesterday. And more today. It actually WORKS?! Yeah, it did. That was in place of the kind of opiate that they ordered for me just in case. There's no way I'm taking that unless I'm in serious pain. I hate feeling weird, and they said it would probably make me feel that way.
Today and the next two days are called "Pro-phase". The stuff being put in me doesn't really have side affects. I can't remember what it's doing exactly. On Monday the nastier stuff starts. That's what I'm nervous for.

I played flute for the first time in a week today. It felt soooo good. But I was also really out of practice. I played Mozart a few times and did some long tones and scales. I'm definitely going to keep it up. My room actually has pretty good acoustics!
It was cool seeing my blood pressure change (it went up, I think) when I started playing. I was getting blood at the time, so the cuff was around my upper arm, and a machine checked my vitals automatically every fifteen minutes.
Then Jane came in, and that was awesome. We all (parents were there too) chatted for a while. She gave me Gladys!

Sylvia came this morning, and we got to hang out for a while, which was really good. We kicked my parents out, so they went across the hall and started to vigorously play air hockey. It was quite amusing. They were REALLY going at it.

Anyway, I'm going to at least try to sleep. Good night!

Stylin' in This Outfit

2009-05-29T03:06:00.000-04:00

Currently wearing: My pineapple pajama pants (COVERED in very bold, large pineapples, facing all sorts of directions), a light blue hospital gown with darker blue, purple, and red strokes, a pair of towel like socks with grips for walking, my friendship bracelets, and two plastic ID wristbands.

Today was long. But what can I really compare it to anymore? People have said that time runs differently here. And man... it does.

I'll try to get everything written. I'm kind of tired (so we'll see how easy I'll be to understand), but there's no way I'm sleeping before this is done.

It's hard to sleep past 7 AM here. The nurses came in and drew my blood (for tests, routine now, I think). In the middle of the night one came in and tried. She tried both of my IVs, and didn't get much. My vains are extremely stubborn, and multiple people have called them greedy. In the ER on Tuesday, they ended up using baby size IVs and syringes (yes, jokes were made). Anyway, the nurse gave up. Several hours later another one came in and actually got a good sample (I was SO relieved that I didn't need another poke).
I can't entirely remember my morning. I was fasting because I was going getting an IV port put in (explained later), so you don't get any exciting descriptions of hospital breakfast (you'll get some later though, I'm sure).
Kara and some of her family came to visit, and I got all excited and bouncy (as bouncy as one can be when they're attached to stuff). We got to chat a little bit, and be excited, but practically right after they got there Doctor Bruckner (the main Oncologist) came in, and we had to have a conference about the next few months. Visitors couldn't really be in there, so they had to go wait out in the rec room (I think that's where they were...). Sad!
The conference was really interesting, kind of scary, and long. She (Dr. Bruckner) talked us through 16-ish pages of what to expect. Mainly about the types of chemicals (is that the right word for them?) that are going to be inserted into my bloodstream during the next few months. Sososo many. With long and involved names, and purposes, and side affects. First, she talked about how chemotherapy is about poisoning the rapidly dividing cells (Leukemia cells). She also talked about how that poison can kill other cells too, like the good ones. She also talked about A LOT OF STUFF. And I can't remember it all, and I don't think anyone is supposed to.
There are several phases I'll be going through, ranging in length from 3 weeks to something like 180 weeks (I'm not going to be in the hospital that long though!!!). Each phase has cycles, which involve taking specific chemicals on specific days. It's all very neatly planned out (but the Dr. said that they will change it for each case if needed).
There was a very long list of all the known side affects for every single chemical used. They were arranged with rows and columns, a column each for Very Likely, Likely, Not Likely, and Rare (different words were used, though).
So many side affects. Simple ones, complicated ones. And a few of them did have ones that seem really unpleasant listed as "Likely". I don't have the list here right now. I don't really feel like listing them, anyway. But yeah. It is pretty scary.

I had surgery done today, for the first time ever. It was fairly minor, I guess, but the term "surgery" got used, and it felt big. I had an IV port put under my skin, on the right side of my chest. It goes into a fairly large vain (can't remember the name, sorry), and they will use it to get the chemo stuff into my blood. This way I won't be getting poked with IVs forever. It's going to be there for a long time. They say I won't be able to feel it, and that I'll forget it's even there. But it's a pretty strange concept for me, having a piece of something put inside me (I know it happens all the time, and on MUCH bigger and more serious scales, to other people. But this is me, and well... I've never even broken a bone!).

At around 1:30 PM "transport" came (no more nurses playing bumper-beds, this was official!) with another rolling bed, and they took me down to the anesthesia place. Nervous. My wonderful parents came too, and we waited for a while in the pre-anesthesia room. A couple of people came and talked to us a bit about what would happen, and checked my vitals and fun stuff like that. Then, amazingly, Meghan (from the Rochester contra dance) walked in. Turned out she was the anesthesiologist! That made me SO happy. I was really nervous, and it made a huge difference in how I felt just knowing that someone I knew would be there for the whole operation.
So, the surgeon came and talked to us, and answered questions. It was time. I got some injected through my IV, and Meghan said it would make me feel loopy. I felt loopy, as she rolled me through some hallways, and it was pretty fun. And soon I was waking up. I was being rolled back to my lair. Felt very strange.
Not long after I got back, Sarah Kramer and her mom came. I got all happy and bouncy (as bouncy as one can be when they are attached to things AND feeling very strange and not quite un-loopified). It was lovely seeing them. I felt kind of bad that I wasn't my usual self, but I guess there wasn't much I could do.
Something funny happened to my throat and breathing. It felt like my throat was suddenly swollen, and breathing was weird and kind of hard to do. This was all very sudden. I pushed the call-the-nurse-in button, and she arrived. I tried to describe it. It went away fairly quickly, but felt like it could happen again. They had mentioned that I might be nauseous. I didn't think I quite was, but they offered me the medicine they would give if I was (and wanted it). I took a few minutes to process everything, and finally decided to take the pill, since I had a stomach ache anyway, still felt weird, and wanted to be able to actually talk to the Kramers. Felt normal soon.

I can't remember exactly how the rest of the day went...
At one point some of the Pryntz-Nadwornys came: Diana, Brian, Rafi, and Kaniel. Got all happy and bouncy (as bouncy as one... heheh, I'm being repetitive. You know the rest. :P ). I had very awesome time hanging out with all of them. They presented me with a photo album with all sorts of lovely people and crazy-good memories. As well as several notes, which were/are amazing.

Sylvia and Sue brought some necessities over this morning while I was off getting something done to me. These included: A big piece of sky-colored shiny paper to write messages on (on the wall next to my bed), a box of markers, sticky tack (putty for putting paper things on walls), poster tape, a ton of heart-shaped post-it notes, and some more books.

How I feel right now: Weird. Stuff hurts. The places they cut to put in the IV port are really sore (it's hard to move my head around sometimes). But besides those aches and stuff, it's ok. Mentally I feel fine. I feel like I can do this. I was definitely not feeling good all day today. But so far it's been bearable.

Over the last two and a half days (how long I've been here) I've gotten three units (a unit is a pint, so six cups) of blood (other people's blood!) inserted via IV into my system. It made me feel so much better. More energy (sometimes) than I've had for weeks. I've also had several doses of platelets (again, other peoples', I believe). But wow, it's another strange concept I've had to adjust to.

Something I'm really excited about is plastering these walls with anything from anyone who wants to send something. The tan colored paint shall not be visable! People have been asking if there's anything they can do. And I don't really know what to say most of the time, but this is something.
My address is:
Nadine Dyskant-Miller
601 Elmwood Ave.
Rochester, NY 14642
4-1400

Winnifred (in case you missed it in previous posts, he's my IV stand (I knowwww, that's a girl's name. I guess you'll have to deal with it.)) and I have been having some pretty steamy arguments. He doesn't like to walk with me. When we take strolls down the lovely corridors, his wheels stick and he turns in awkward circles, complaining. I've been pretty forceful with him, but I don't think this is how our relationship should be. *Sigh*

Soooo, this turned out to be longer than I expected... I'm really sleepy now, and it's late, so I guess I should go ahead and post this.

My Wristband is Shiny and Green

2009-05-29T00:24:00.000-04:00

~*~This was written yesterday at around 7:00 PM~*~

Wellll. The last six-ish hours:

I got my bone marrow biopsy, and I definitely have Leukemia. It's the better of the two kinds they were talking about, and everybody was very happy about that (it's all relative, right?).

So I WILL be here for at least a month. And a few people have asked, so here is my address:

Nadine Dyskant-Miller
601 Elmwood Ave.
Rochester, NY 14642
4-1400

(That last bit is important, it tells them what room I'm in.)

So...

At around 1:30 PM two nurses wheeled me (on the same bed that's in my room, it's really cool) through a bunch of hallways, and several sets of doors. I saw another young-ish patient, the first I've seen, and so far the only. He looked to be about 14. We exchanged amused smiles, as the nurses tried not to run into anything with my bed.
They kind of failed.
Then one of them remembered that I needed to be wearing a mask when I was out of my room (because I have a low amount of white blood cells, which means my immune system is not really working, and I can't be exposed to anything). It was so strange realizing that people couldn't see my smile (and a smile was definitely there, mostly because of the bed randomly bumping into stuff).
We finally arrived at a random (hopefully not to them) room with random equipment, most of which I can't remember. They talked to me a bit about what they were going to do (get a sample of bone marrow and a piece of bone (I think?)). Then they talked to me about the stuff they would use to put me out for a bit (it had a fancy name, which I can't remember). Supposedly it would make me go to sleep in 5 seconds (!!!), and I wouldn't remember anything.
They hooked up a syringe to my spare IV (yup, I've got a spare IV), and started inserting it (cloudy white stuff in the syringe) into my bloodstream. I amusedly informed everyone that I was still awake. Still awake. STILL awake. And then I fell asleep, and I kind of remember falling asleep. Then I woke up, but not entirely, and they wheeled me back to my room. And I felt like there were several hundred pounds of weight over me, and I slept a bit more. And then I woke up, and now I'm up (and it's about 4 hours later), and everything is normal.
I do indeed feel like I "slipped and fell on an ice-skating rink", which is exactly what Lauren, one of the doctors (Oncologist, I think?), told me it would feel like. Not bad, everybody keeps asking if I want to take Tylenol, and I'm like, "NO, it hardly hurts!".

I met Rosie, the music therapist, today. She was very nice (um, everyone here is nice on some scale, mostly very), and we talked about music therapy a lot, since she knew I wanted to possibly be a music therapist. She offered to give me guitar lessons, which made me very happy. She also told me that there is an inter-faith chapel that has good acoustics, and that when there aren't any services going on I can play in there. And there's a piano. Yay!

There are two people named Eric who come in a lot, both of whom are very cool people. And there are just generally a lot of different people popping in and out. It's nice, and it's also amazingly nice to not have anyone in here at all (!!!).

I start chemotherapy on Friday. I'm already trying to decide what color wig to get. From what I hear, there are a lot of possibilities. Suggestions? If I really don't know, I'll go by popular vote, so get your vote out! =P
One of the doctors said that he has seen peoples' hair grow back different from how it was before! Apparently a blonde turned into a brunette. That's crazy, I kind of can't wait to find out what mine looks like.

I still can't believe I'm going to be here for a month. I'm going to stick all sorts of things to the walls for sure, and actually use the closet. I haven't unpacked. Not sure I want to, yet.

And now that you've read all of that (maybe...), I just want to say, you're all such amazing people. I smiled so many times reading your comments on my last note, and hearing your voices on the phone, and seeing you in my room. But especially it's the words. It's hard to imagine NOT getting through ANYTHING, with all of the support you're giving me. And I love you all.

--Note: This is copied from the "note" I posted earlier on Facebook (when I mentioned comments, that is where they are). Most of the people I know are on Facebook, and it's the way that I communicate with them, but I know that plenty of people aren't.

Explaining Un-Happy Things

2009-05-27T20:21:00.000-04:00

This post is also on my FaceBook profile in a note, just to let everyone know. =) I wrote it at 11:30 AM this morning (Wednesday, May 27th 2009).

OK. So, it's kind of hard figuring out how to get the news out to people. I could use the phone, e-mail, bird, message strapped to an aardvark's back, whatever. But this seemed like an ok way to start.

I'm in the hospital (Strong Hospital in Rochester, NY), and have been since yesterday. I could be here for a month, probably more.
I feel absolutely fine. Seriously. Nothing hurts (though the IVs are a tad bit pokey sometimes. =P ).

There's a reallyreallyreally good chance that I have Leukemia.

And it almost sounds over-dramatic now that I've written it there. Oh well...

I had gotten blood tests last Friday, because we thought I had Anemia.
My energy was practically non-existant, my heart would pump really fast and loud when I went a flight of stairs, and everyone said I looked unusually pale. I was getting random bruises all over me, without any idea where they had come from. My feet were spotty.
The results came back three days later that my platelets (in the blood, have to do with clotting) were only 13 (thousand, I think, it's still confusing), when they should have been 150, and a couple of other things were abnormal. The people at Olean General Hospital (OGH) couldn't figure out why I was still able to walk (I walked roughly 4 miles on Sunday, and did fine). They said I should go to the emergency room.

My mom did some quick researching, and we decided Strong Hospital was right, and we were already in Rochester anyway. So off we went to the ER, and they gave me another blood test to make sure the first was actually right (OGH doesn't have that great a reputation).
An Oncologist came in to talk to us once some of the labs had gone through. And he said that what I had was most likely Leukemia. He said the chance was about 75% that I had it. Later they found Leukemia cells that had been spit into my blood. So now the chance is almost zero that I DON'T have it.
I'm getting a bone marrow biopsy today, and then we'll know for sure.
And yeah. I don't think it has sunk in completely yet.
I don't know how many details you guys want. I might keep a blog/frequent notes, in case people are interested in what goes on (would you be?). Some of this stuff I find really interesting.

I'm SUPER excited to meet the music therapist. I finally realized yesterday that music therapy is something I want to seriously consider for an occupation. One of the nurses here said I can probably learn how (at least partly how, anyway) while I'm here. And that makes me extremely happy, because I don't think I would have pursued it if this hadn't happened.

Random note: They provide a TV with movies, TV (duh), games, and internet. But they don't allow Facebook. Yay laptop!

I changed out of the hospital gown today, and that's made me feel a bit more normal. I still haven't met any of the other teens on this floor, but I really want to. The rec room is right across from me. =D

I get to walk around pulling the IV stand along with me. It is a pole that is taller than I am, with six wheeled legs, and a bag full of the fluids they're pumping into me (salt water and glucose right now, I think). I named him Winnifred. We're deeply connected. In the form of a straw stuck into each of my arms. Charming.

The eraser on the whiteboard (which is telling me who the nurse is today, who is the tech, what number to call for food, and what the date is), looks exactly like a computer mouse. And, seeing as there's internet, I intelligently pulled it down, turned on the screen, and began moving the "mouse" around on the table. The little yellow arrow on the screen was not moving. I examined the bottom of the "mouse", and discovered there was only black felt on it. Ohhhhhhh it's an ERASER! Right. The keyboard has an attached trackball sort of mouse, but believe me, it does NOT look like a mouse. And the buttons are way on the other side of the keyboard. And the whole system is called "getwell:)network".

We called the Rochester dance booking person, there's no way I'm playing the dance tomorrow. And there's no way I'm playing Toronto on Saturday. And basically I have to cancel everything for at least a month. That's a LOT of stuff, as some of you are definitely aware of.

Anyway, there's some things for starters.
<3

The Windows Here Are Really Cool

2009-04-14T23:51:00.000-04:00

One of my favorite feelings is running on a flat road at night, with a full moon, trusting that the pavement will be there for every step, feeling it pound up against my feet. Wearing my pajama pants and a sweater, my dad next to me. Two minuscule people in the middle of the night on top of a hill, away from any city, running mindlessly through the dark. Sometimes it feels like running away, in a sort of fun way. We get to the top of the hill, slow down, amble along, usually to the first stop sign, and then turn back. Coming around the curve before the hill drops back down is amazing at night. The single (completely randomly placed) streetlamp reaches only far enough to show there's more there than what you can see.
This has become a sort of routine for us, and it's really nice.

I'm in Rochester alone this week. Compared to other weeks, anyway. I drove here myself this morning (7AM), had stuff until 4ishPM and then came home (is that what I should call it? It's one of two, I guess...). Lauren (the woman who lived here, just moved) is here this week, she's getting ready for her sister's wedding, which is this weekend. But I had the house to myself for a long time, and that was awesome. Of course, in this nice block of alone-time, I only did homework (except for a few apple breaks (going to the kitchen, chopping up an apple, going back to the couch)).

--> Inserted after re-reading: What I wrote there sounds like it could be misinterpreted as this: I would go to the kitchen, chop up an apple, LEAVE it there, and go back to the couch. Then later, I would get up again, go to the kitchen, chop up another apple, leave it there, go back to the couch. Repeat process. Resulting in a mountain of apple slices, which, in an image generated by my sleepy mind, would eventually overflow the counters. This image of apple slices flooding the kitchen is very vivid. *Must sleep.* <--

I parallel parked in a fairly tight spot today, on my first try, and it made me happy. I got to literally 2 inches from the curb, too.

I walked around Olean yesterday while the tires were getting changed (no more snow tires! Yes, snow, I know you're listening, and yes, snow, I know you will be back soon now). It was interesting being in a smaller town again, after being used to Rochester. I re-discovered the thrift store there, and wandered in, and came out with an awesome skirt for contra-dancing (which I did not expect to find there). And now I'm thinking I didn't really need another one. Ah well, what's done is done.

In the post office, mailing something, I'm pretty sure the dude behind the counter remembered me from when I took forever putting together the package for the composition competition. It had been twenty minutes before 5:00, the deadline for postmarking things on that day, and I had a large selection of things I needed to include in the huge manila envelope, including ANOTHER manila envelope.
I was a little bit more together this time, but not much. I refuse to put everything into the envelope, address it, stamp it, and seal it before I'm at the counter. It's so much more fun letting the postal dude watch me shuffle everything around on the tiny counter space.

I suppose sleep wouldn't hurt too much, now that it's past midnight.

Day of Mis-Matched Eyes (a.k.a. My Day At Home)

2009-04-10T16:46:00.000-04:00

I haven't had a whole day with hardly anything planned for such a long time. I forgot what it's like. I went to class this morning, got back around 11:30. Then I did my homework, took pictures of an awesome chess set, did back-bends and handstands, and composed a bit, and now I just feel lazy and yucky. I need to practice flute, and I need to clean my room (which will take about 10 minutes, it's really not that scary right now), I need to be off of the computer. And after I practice and clean, I can only imagine how good it will feel to be done with everything for today. Which hasn't happened in ages.

Jack-the-dog's eyes are the coolest eyes. One is bright, bright blue, with an icy glow, and the other is dark reddish-brown. He's curled up on the rug in front of the (empty) fireplace, looking at me now, and they're beautiful. Whoever picked this rug picked well. It's tan and extremely fluffy, just a fluffier version of Jack-the-dog's fur. I'm picturing all of the dog hair that's probably in the rug sort of floating out. It would be a two inch thick rug of pure fur rising out of the normal one. Cool. 'Cause it hardly shows up.

Why Do I Do This?

2009-04-08T23:06:00.000-04:00

I can't figure out why I do this. I like to type, but I sort of prefer paper-journaling. I have no idea if anyone even reads this at all. That may or may not be a hint.
OK, I'm going to sleep now. Maybe. If I can?

Jelly Keys

2009-04-08T16:47:00.000-04:00

I just have to describe this keyboard.

It is made out of gel-stuff, and it can roll up, and the keys are islands that my fingers can miss (getting stuck in-between, not fun). The keys also don't necessarily press straight down, making my typing sort of wobbly. They are completely silent. There are two spacebars, one for each thumb. The whole thing is sort of clear, and I can see the wires inside, which is veryvery cool. Anyway, I'm in the Eastman computer lab, since I was early for flute choir. This is the only keyboard like this in the whole place.

And y'all are probably thinking, "So, it's gel roll-up keyboard, move on."

But it's exciting to me, I've never used one before!

Ok, off to play flute with other people playing flute.

Title Eludes Me Right Now

2009-04-07T18:41:00.000-04:00

Being at Eastman for four hours every Tuesday is good to get things done, but once I've gotten the things done that need doing, I get antsy. Or, once I get the things done that I can stand in one sitting...

And since when was chocolate with espresso and more chocolate supposed to make me TIRED?! Oh right, I already knew it would. This is why I don't drink coffee much. Gahhhh.

Of course I'll have to do more homework when I get home because I left the math textbook home. Smart going. I left the headphones home too, so I can't work on my composition in Margaret's (my composition teacher's) office (she teaches a class in the next room over, and if I don't use headphones I'll annoy the daylights out of them all, which I really don't want to do). I could practice flute, but I'm not motivated. I really should be motivated. But it's ever so much more fun talking about how un-motivated I am than actually trekking over to the annex and pulling out the flute. And don't get me wrong, I love flute.

Maybe I'm just still tired from this weekend.

This weekend I: Played at the Fiddlehead Frolic, an all day contra dance in Ithaca. Brought Rafi and Sylvia, saw Ben, Alex, and lots of other people, had a wonderful time dancing and hanging out, and basket swinging. Then stayed up until 5AM, which was awesome, and drove back to Rochester on Sunday morning w/ mom, Margaret (different from my composition teacher at ECMS), and Rafi. Went to RPYO rehearsal. Stayed overnight in Rochester in the big house on Trafalgar St. with Jack-the-dog and mom. Drove home to Hinsdale in the warm sunshine on Monday, drove back to Rochester in the snow on Monday (yes, the very same), because mom wanted to drive at night in the snow rather than early in the morning in the snow (go figure). Jack-the-dog decided that 5AM was a lovely time to bark, and that 6AM wasn't early enough to stop (resulting in an hour of near-continuous barking. He has a loud voice that travels through floorboards insanely well). And I was kind of freaking out, thinking maybe someone is breaking in, Jack-the-dog hardly ever barks, is that a creaking step, yikes. That was this morning.

Had a math test, chem class, no english class today. Got to see Sylvia at Java's, and when she gave me a ride to Eastman, and talk with her. Had my flute lesson, and did homework for a few hours, and now here I am, doghairy and sleepy, with well-exercised fingers from flute-playing, hand-writing a near-essay for chem, and typing on this stubborn keyboard.

I safety pinned my chem assignment together today because I didn't have my stapler with me. It felt ridiculously funny. I hope Prof. Gulde doesn't mind too much.

Of course someone commented on my having random safety pins with me. I just use them for a lot of things, I told her. Like sewing my backpack back together, because it tends to break. I've gone through many safety pins that way, mangling them completely, re-attaching the straps. It's fun.

Me Now

2009-03-06T16:10:00.000-05:00

I want to write so bad, but I can't think. I'm trying to write a story for a class (creative writing), and it's not coming. It's like I'm trying to write something that isn't there, and I don't have the energy to find it. I need a rough draft by Tuesday, and that doesn't even feel like much (only a few pages), but I'm just not motivated. So I came back here again, and realized that I haven't blogged for so long that I've forgotten what it's like (I've been doing lots of paper journaling). And I wonder if anyone will even read this.

Me right now: Water in my ears; clean and dry from a shower; frustrated at my procrastination habits; eyes dry; sore nose; satisfied at caught-up-ness of math homework; looking forward to playing a contra dance tonight with Tunescape; missing you ("Who?" you ask? Lots of people.); trying to find that song; alone; liking the dark; liking the not-cold weather with a heart that's tired of cold; remembering sitting by the pond today facing the wind and loving it's feel on my face; ready; not ready; wondering if you think about me (Who? Lots of people.); wondering about the future (both near and far); worried about choosing; not understanding; sure I missed something; in Rochester; realizing that lists are easier for me than trying to write everything out in coherent sentences; smiling inside when I remember that time; missing it; wanting to play guitar; wanting to hear guitar played in person; getting ready to go; not aching so bad anymore; missing you (Who? Lots of people. Yes, I know I'm repeating myself.); mellow; going.