Monday, October 27, 2008
on holding one's breath
Some of you will see me around on my good days, or you'll see self portraits and say "You look great and healthy and happy as ever". This is not entirely untrue- for those precious few days I am very, very happy.
I am not acting but you are still seeing a show.
here is my reality:
My life now is hooked to an IV 24 hrs a day, five days a week. My life is nausea, my life is too tired to speak. My life misses the comfort of fingertips along my back, taking my mind off of pain. These days I am not touched without gloves. My life now is a ritual of treatment, my place of worship the hospital. Every Sunday offering up my blood to white-robed oracles and praying my counts will be ok. In Sunday school, long ago, didn't I accept the blood of christ? emanation, martyrdom. I can't help but draw parallels. You get to the point where you can do no more unless it's for others. That's what I'm feeling now- I wouldn't be doing this if it were not for others. If I was alone I'd be content with an untimely end. I'm sacrificing for all of you.
blasphemy.
It's day one. I will hold my breath and come back up for air four days from now.
wish me luck.
Saturday, October 25, 2008
moving day, moving on
People often ask me if having cancer is a surreal experience. Can you imagine only having a year or two to live? Neither can I. I usually say that I've acclimated by now and grown accustomed to the "realness" of my situation. When I awoke today in my beloved apartment for the last time, third story sun shining through my big victorian windows, everything felt like another dimension. In a way, it was- I was waking up to my past. The life I lead before cancer is history, and I'm having a hard time letting go. I want to hold on with white-knuckled desperation because at 23 I was finally coming into my own, for the first time in my life. There was an inclination of something monumental just upon the horizon, and I was right, though it was not what I had expected. Because of this I've started to ruminate on fate, or purpose, or whatever you'd like to call it. I felt cancer coming intuitively, and now I believe it is a roadblock I am meant to overcome. My fate has more glorious and catastrophic things in store.
now you see it
now you don't.
Moving day is today. I've always loved the idea of leaving things behind to be found in old houses. I want to find something or leave something- little pieces of the past, a sentence to a story you'll never know. The idea of a legacy left behind, even to a stranger. Other people's lives fascinate me. I always thought I'd have a child eventually, and I could leave all my writings and odd things behind to be passed down. I'd be someone's crazy great-great-great grandmother that left all of her love-letters and ramblings. Now I'm faced with the very real possibility that this won't happen, that I'll die prematurely in some hospital bed and slowly be forgotten. My story will rot in a box somewhere, just as I will. Perhaps the only way for me to move on from this is to leave a part of me behind.
I need to pry up some floorboards and get to it.
Thursday, October 23, 2008
The people all call her Alaska
I have been writing a lot lately, not here, but in my notebooks, gathering phrases and ideas. The idle hands have a lot to do with it- I am pretty much stuck in this house without a car. I still feel like the odd one out in suburbia. It makes me stir-crazy. People stare at my tattoos and strange dress. I miss the homeless yelling at me, I miss the hot tranny messes spilled all over the sidewalk. I miss the beautiful houses and trees and weather. I miss the gays. I miss designing things. God damnit, I miss San Francisco.
I have a wonderful friend who recently bought me a remote to my Nikon, so here are a couple of self portraits today. The odd one out and soooo not kosher:
Now off to drink something I have invented that is the greatest thing since ever:
Soy hot cocoa with liquid morphine and whipped cream on top.
Try it sometime, you will not be sorry.
Monday, October 20, 2008
technicalities
Also, letters have been received and I am awaiting my boxes of things from SF so that I can return the generosity. You guys (even those I've never met) know me surprisingly well... art projects and old things really do float my boat!
<3
Sunday, October 19, 2008
things on strings
"Planet Cancer: We've done drugs Keith Richards never heard of."
My insides feel like Keith Richard's face right now. Recovery after each cycle seems prolonged, replacing recuperation with utter frustration. Not feeling strong enough to get out of bed or eat for weeks at a time just sucks ass. I can't really sugarcoat it.
One of the things I initially thought when searching the web for other twenty-somethings with cancer was, "Fuck, now I'm going to have to start smiling in all of my pictures." Everyone smiles, lots of bald shiny heads smiling to show they're getting through it with optimism. I have always been a bit dramatic and at times thoroughly pessimistic (hey, it makes good art). Where will my sarcastic pouty half-smirk fit in cancer land? NOWHERE.
So, something that truly makes me smile every time I watch it: Le Ballon Rouge. Lamorisse, 1956.
This is the end, which is my favorite. All of the other balloons come to save the boy. I have always been fascinated with childhood perceptions of flight- balloons, kites, zeppelins- all vehicles for an imaginary escape plan, all reaching places one can't quite reach. I use them as metaphors in my writing quite frequently. I have often cited this guy as my hero:
Just a guy, a lawn chair and a dream.
So, when I feel a bit better, I want to do a series of self portraits with balloons. It has potential to be both whimsical and cynical. After all, what do cancer patients receive at their bedside? Things on strings.
Wednesday, October 15, 2008
LEANNE WON!!!
yay.
Ironically, I've never watched project runway because I've been too poor at school to afford cable.
vicarious joy. Her collection was the only one that was truely cohesive and innovative. It is paaaainful that I can't be designing my senior collection right now.
I just keep telling myself that good things come to those who wait...
Monday, October 13, 2008
me and the devil blues
Chemo today. Adriamycin. They call it the Red Devil because of its color and inherent nastiness. During my three hour powwow with the devil I read a small article on Robert Johnson and his elusive history. I wrote a paper a couple of semesters ago on persona poems based on Leadbelly, having been a fan. I had never heard of Robert Johnson though. Oh, is he good. soso good.
"she got a lein on my body now, mortage on my soul..."
His history is convoluted with folklore. They say he died at 27 after drinking poisoned whiskey by a man jealous of his wife's affection. They say that he recorded his 78 with his chair facing the corner of the room, back to everyone. They say he sold his soul to the Devil for his talent.
I have always had a love affair with music rooted in blues. It comes from my dad singing and playing his guitar for me as a little girl. I don't think he knew many songs, but House of the Rising Sun was the one I remember most. I didn't understand the song. I knew it was sad. New Orleans was a place I'd never been to, but my family had roots there, so somehow it felt personal. I reveled in the stories my dad told me about his guitar, how he bought it on a Vietnam stint, how the inlaid dove was real ivory, shiny and smooth. When I got older I tried to learn to play. The strings hurt my hands; I could never press hard enough. It never occurred to me that there was anything else to learn on but steel.
Here is a little playlist of my favorites, including Leadbelly's version of House of the Rising Sun, and a song from Dylan & Cash's Nashville sessions.
Wednesday, October 8, 2008
a memorial for something or another
I feel obligated be candid on this blog, despite the desire to protect myself. Voyerism is a vulnerability. So is cancer, so is life. And, life is all about other people, living things, only diffused through one's self and then back again, sharing, hopefully infinitely. The lack of blood is making me crazy.
So I write, even though earlier I kept my face firmly planted in a bathtowel crying, sobbing hard, so that my family in the next room wouldn't notice. I am broken down. My body is a mess, my mind slowly slipping into the grips of phobia. The thought of having a needle biopsy in my neck tomorrow is terrifying. I will simply. refuse.
I am only two decades long.
and so much more pain to come
What thread do I have to hold onto? Little mediocre things to satisfy.
my shoulders are numb
no great weight, just
lack of bloodflow
feeling
my heart beating
my body senseless
literally.
incessantly
trying to make it up to me
it's ok baby.
i dont mind if you
let me down
again.
i can
pick myself up
just fine baby my
shoulders are numb
anyway.
Tuesday, October 7, 2008
I will be in sf this weekend.
My heart breaks for little insignificancies while my body only breaks for the monumental. For some reason I thought that my dire situation would heal me of all past insecurities and mental calamities- your priority will cure what ails you. How wrong I was. I am still the same.
Chemo has made me anemic- I can feel my heart beating hard, trying to make up. Parts of my body are numb due to this inadequacy. I will need a transfusion soon. This is such an odd thought- someone else's blood inside me. I could make so many epic metaphors right now it's disgusting.
Monday, October 6, 2008
communication 101
I am sending out an open letter to anyone who reads this. Send me something. Anything. A heart-felt confession, a joke, your deepest darkest secret, a toy soldier you found on the sidewalk, a piece of a puzzle.
I will send you something back. I probably won't have the energy every time for a hand-illustrated masterpiece, but you can bet it will be something. Maybe a Polaroid. Maybe a receipt with pornographic cartoons drawn on it, maybe some of my extra percocet. Maybe a page from my journal.
And MAYBE, if you give permission, I'll post one or two on the bog.
Happy Sending.
Email kaylinmarie@gmail.com to get my address...
Sunday, October 5, 2008
tumor justice league
What would have been a much-needed reunion with one of my favorite people this weekend collapsed anti-climactically into a one-woman sleep/puke fest.
It is the most miserable thing my body has ever been through. Death, essentially. Drugs teasing your body with the hot, muddied sensations of death. I wouldn't wish this on anyone.
Luckily my lady made me a special talisman with a glittery gold tooth.
rawr.
Thursday, October 2, 2008
Adventures of Cancer Girl, pt. 2
One night, hopped up on Decadron and robbed of sleep, I decided to draw out a comic entitled "The Cancer Girl Chronicles". This basically involved my tumor with a hitler moustache trying to invade my body after Poland. I will scan the original story line eventually.
Here is what my improper illustrator and I came up with:
My kitty looks great on roids. We have at least 5 stories in the works. Click the donate button if you want to see more, as these things take a hell of a lot of time! Or specify that you'd like to donate to Cure Sarcoma, another great cause :)
Upcoming stories include scenester alien fetus possibilities (oh thank god that's just a tumor in my pelvis), how god sucks at bingo, and more medical marijuana smoking exploits.