Tuesday, December 23, 2008
Hey guys, I feel great. I am single-handedly making cancer my bitch and I've also got this great Linsdsey Lohan hairdo. I will be back before you know it!
oh, hey, an eskeemo only a mother could love. Right after chemo; I've just puked. I'm really scared of dying right now. My eyebrows are falling off. I'm hopefully half way done but I cry at the thought of enduring this for another 3 1/2 months. I cry A LOT. I feel I've lost all of my friends and I miss them dearly.
Unfortunately the latter has become the norm.
Lately I have succumbed to numbness- perhaps I've just become used to my situation. When the pain becomes too much to bear, my mind just pops right off from my body like a balloon. I feel separated from everything, just floating and unfeeling. I span time like this. Nothing else matters. Great coping mechanism, huh?
Friday, December 19, 2008
Even though I 've only known him a short while, he has provided me more comfort during this ordeal than people I've known for years. He was never afraid to tell me to smile; he had been there before.
It's surprising how much I am mourning- I was praying, errr, sending good energy out into the ether in hopes that he'd make it to christmas.
fucking bone cancer. eat my ass.
Thursday, December 18, 2008
It is fitting, as I found out this morning that my tumor is almost completely gone. The Radiologist can barely see it. There's still cancer in the bone, but we're working on that...
To pass the days, I've been obsessively coloring in Gray's Anatomy with my Prismacolors. It took me awhile to realize the significance of this- adding bright colors to otherwise mundane medical imagery as a way to cope. It also brings back a certain childhood nostalgia. I think when I'm done with the whole book I'll cut everything out and make some sort of collage.
Thank you to everyone who has sent me mail. It is SO encouraging getting those little treasures during treatment- I could be having a crap day and it will completely turn around due to a letter. I'm slowly getting around to mailing things back...
Monday, December 15, 2008
I've also begun radiation, which has made me incredibly tired- I go home and pass out every day. The actual procedure only lasts a minute or so. It's freaky, like something out of a Kubrick film- they play piano lounge music, the lights dim. You pull down your pants. Lasers come at you from all angles. A huge machine rotates around you, buzzing and clicking. It's like a crazy space disco party. But way less fun.
Saturday night I went to a local bar with good friends. I saw people from my past- kids I remember from elementary school, jocks from highschool. They all look the same, same haircut, same clothes, just fatter. I wondered where their lives have taken them (I doubt very far). And then, for a split second, I felt lucky that I have cancer. I was grateful for the experience, the chance to grow eons above these guys in highschool who used to make fun of me. Even though I am a skinny, weak, hairless mess, I feel as though I could lift a ton above my head. In a way, I am more confident in my own strength than I have ever been. So, here's to personal growth.
vicki and kaylin in younger times
Wednesday, December 10, 2008
winter woman, you are a
pale shade of red
watching, still in bed
the crocuses offering upwards
like innumerable paper cups
how did you get in the business
of not being born?
how did you inherit
this endless passing time
the count of broken lines
on the folds of your palm
you are a cold reader, you are
under the knife
the slivers of a past life
submerged under skin
tiny sunken ships are
just beneath the surface
i remember them still.
winter woman, a humble and
healthy shade of dead
watching, from your bed
the cruelty of a sunrise
the amputation of your holidays through
a picture window
shiny sunken bulbs are
just beneath the surface
waiting to bloom
i remember them still.
A friend recently introduced me to the band Deerhunter, and I am in love. A good deal of the lyrics refer to the hopelessness of chemo and radiation treatment, isolation, etcetera. Here is an except from their blog:
"When I was sixteen I was hospitalized for extensive surgeries on my chest ribs and back because of marfan's. That entire summer was like completely erased. I was in a coma for a couple of weeks. I got to really understand what its like to not be well. I've always sort of understood, growing up with marfan's, but this was hardcore shit ... Anyways, I was trying to transpose the concepts of illness (in this case I was writing from the perspective of someone going in and out of consciousness during chemotherapy, and how they would miss their friends, their past experiences, and anything that reminded them of normalcy, or a time before misery. Nostalgia as anesthetic."
Tuesday, December 9, 2008
got my radiation tattoos yesterday.
I am hanging in there... day by day.
Had a dream that I was floating down a river made of gold. Almost falling down, as if through a chute. It was incredibly intricate. I was washed up on the bank when a friend appeared and swam to me. I saw a rabbit run off and wanted to point it out, but felt a deep sadness for the moment being gone before I could do anything.
so it goes.
Saturday, December 6, 2008
I start 30 rounds of radiation on the 15th, concurrently with chemo.
I don't even know what to expect.
I've just finished my 6th cycle, 5 days of chemo (today is my first day off) and I feel barely alive. I am a shell of the person I once was. I can't even do those things so vital to living- eating, sleeping, etc. all deny me their pleasures.
oh well. another day.
Sunday, November 30, 2008
For once in my life I am surrounding myself with people who want to be with me, instead of chasing ghosts. A realization of mortality will do this to you. You find yourself grasping the present with frantic enthusiasm.
I have no more illusions.
Besides, who needs illusions with sunsets like these?
Tuesday, November 25, 2008
-whilst driving my mom's car.
This is a cancer patient's equivalent of an all night binge-drinking extravaganza ending in you convincing your best friend to flirt with some dude to get the W hotel pool key and swimming at 3 am. Basically, EPIC.
...even if it is just coffee. come visit me!
Monday, November 24, 2008
I got high last night (family-deal with it) in an attempt to feel better and remember what hungry felt like. Leave it to me to end up scarfing down tangerines all night and obsessively googling "hemipelvectomies" for hours on end, scaring myself shitless.
I am slowly realizing the severity of my situation. It takes time to research, for everything to settle in. Hopefully things will go exactly as planned- I'll never need surgery, the cancer will go away with radiation, and I'll be in remission/cured forever. Realistically, though, one must confront the possibility of not-so-favorable outcomes. One must confront death. I had a dream a couple of nights ago in which I did just that.
You see, I've had a conversation with death. At a Denny's, no less, which I can only assume signifies purgatory or hell or some other horrid sterile place. We sat at a booth and had a cup of coffee. I had a sense death was a man, but with no discernible body. Just fuzzy blackness. I never looked directly at him, just stared at the speckled beige tabletop.
We worked it out. We've reached an understanding. I'm not going to die anytime soon. I was conscious that it was a dream, but still terrified in the beginning, as if thinking about it would usher death in. It was like a nervous first date, I slowly becoming more comfortable as the conversation progressed. In the end, I was left with a feeling. Just a feeling, indescribable, but I will try to anyway:
the only thing that matters is to be happy by making others happy, to love by being loved, rather than being controlled by desire.
I'm not sure if I even subscribe to this (isn't desire so much fun?), but this was my overwhelming feeling upon waking up.
Friday, November 21, 2008
I have a lesson for you today: appreciate your body.
Your body, this amazing thing that houses your consciousness. Touch something right now with your fingertips- the keyboard, the surface of the desk, your face. Feel it. Know that I can't. I will never be able to hold your hand and feel it in mine like I did before. Walk around today, feel the sun on your face. I used to walk around everywhere. I miss it. Taste something today, really taste it. Feel how satisfying it is. I haven't even been able to chew food for the past few days. Oh, what I would give to be able to eat curry again.
I've been hesitant to describe my chemo side-effects on the blog, if only because they're THAT horrible and there are people who read this thing that I miss kissing. I suppose that's why I don't want to show anyone my baldy head either. But... fuck that. I'm here, all alone, going through this alone. We're all human, and what I'm experiencing the most intrinsic, human thing of all- suffering. Probably more extreme mental and physical anguish than most people ever experience, but relatable non the less.
Plus, I would have been grateful to know what really happens before I started. I went into chemo thinking my biggest issues would be hair loss and nausea. Hi-fucking-larious.
Here is an example of my last two weeks with the adria/vin combo. Adriamycin is a powerful antibiotic, killing all of the good bacteria in your body, while vincristine is a nerve toxin:
1.) Mon-Tues: The actual chemo days are not so bad. You sit in a chair for 8 hours hooked up to a machine and feel slightly flu-like when home. Fun times in the near future!
2.) Weds: Wake up vomiting. Extreme nausea and fatigue that lasts about a week. Trip to the ER due to vomiting, fever, and an internal infection.
3.) Thurs-Fri: Drug induced stupor in bed. The fatigue feels like you've got cabin fever within your own body, or restless leg syndrome, but all over. Your body is exhausted and nauseous but your mind is healthy and awake. This disconnect is horrible. Minutes seem like hours. Around Thursday the nerves in my feet begin to hurt. By Friday it is excruciating to walk.
4.) Sat-Tues: Still can't walk, still fatigued and in bed. The nausea finally subsides.
5.) Weds-Thurs: Finally, my feet feel normal, but now I wake up with a mouth full of sores due to thrush. The sides and back of my tongue are covered, and they go all the way down my throat. I can't chew anything. I start to slur my words. The pain is horrible. Also, be grateful your shit is normal and lasts 5 seconds and is generally uneventful. Those chemo mouth sores don't just stop at my throat... They go all the way down my digestive tract. So be grateful your shit doesn't feel like satan riding a motorcycle straight from hell and out your ass twice a day. It is seriously THE WORST pain I have ever experienced.
So.. here I am, Thursday with thrush. You get to read it for 5 minutes, but I get to live it for the next four months. Jealous much?
Friday, November 14, 2008
I found out Monday that my tumor has shrunk from 7c to 3.4c. It's halfway gone and I haven't even begun radiation yet! Also, no metastasis so far.
I wish this meant that my treatment will end sooner, but alas, that's not what the oncology gods have in store for me.
Recovery after the vincristine/adri weeks is always hell. My feet have started to hurt due to nerve damage. Luckily they have given me an extra week due to Thanksgiving, so maybe I'll get a little relief...
Sunday, November 9, 2008
Taking a walk in Half Moon Bay this weekend was inspiring. Reuniting with friends in the city was equally so. I can't help but feel removed when I visit- everyone carrying on as normal, and I with the big red "cancer" stamp on my forehead. It is an unavoidable part of me now.
The question is, will the people I love let cancer be a part of them?
So much inspiration lately. Writing lyrics, poetry, prose. Drawing all of you little gifts. Absolutely no fashion design. I have remembered the things most vital to me. I feel heavier than I ever could have felt without this diease; the crushing weight of experience now resting on my shoulders. I have more focus and direction than I ever could have dreamed. Momentum. I hurl myself a million miles an hour at happiness, if only because I have to. The combination of weight and velocity renders things unstoppable, no?
Monday, November 3, 2008
I do not know why the idea of Seal disguised as barak Obama tickles me so. But it does.
The results seem to overwhelmingly point to McHale as winner, though I will give props to those who obviously put in their own names and also that of Buster. Even though MY elections are over, I have to put in a little word and encourage everyone to vote tomorrow. I've only voted in one other election, Bush v. Kerry, and it was like having to choose between a monkey and a shar-pei dog. So obviously I am excited.
yes to animal rights, no to more constitutional amendments, and yes to a kick-ass bullet train...
Sunday, November 2, 2008
The Make a Wish Foundation does not grant wishes to those over 18. This is arrant ageism, and particularly cruel due to the fact that my kind of cancer typically effects the pre-pubescent. To be honest, my wish would be adult and way-lame, like scoring a job interview with Alexadre Herchcovitch or something. Nothing like celeb-dates or closing down Disneyland like Miley Cyrus did for her birthday. We'll save those wishes for the leukemia babies.
But, if I did get a celeb dream date, who would it be with? I can narrow it down to a battle between The Soup's Joel McHale, and former daily show corespondent Mo Rocca. Let's compare, shall we?
While Joel McHale wears 2k suits and underwear made entirely of vintage baseball cards (Jose Canseco, you have a whole new kind of streak coming!), Mo Rocca has nasally sarcasm and the deadly Italian/Colombian hafsies combo that makes any girl wish she was a cartel boss' trophy wife. McHale has the Soup and Rocca has the Smoking Gun. McHale is married and Rocca is, I'm pretty sure, like 95% gay.
Who would win?
I think I'd have an easier time getting into Joel's pants than Mo Rocca's, thus being able to procure his baseball card underwear, sell the cards on eBay, and appropriate enough money to cure my cancer. This is no pious endeavor, mind you- the curing of Ewing's Sarcoma would be purely selfish. Basically, I'd win.
So that's pretty much what I've been thinking about lately. Cast your vote now!
Monday, October 27, 2008
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.
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
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
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
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!
Sunday, October 19, 2008
"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
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
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
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
my heart beating
my body senseless
trying to make it up to me
it's ok baby.
i dont mind if you
let me down
pick myself up
just fine baby my
shoulders are numb
Tuesday, October 7, 2008
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
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.
Email firstname.lastname@example.org to get my address...
Sunday, October 5, 2008
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.
Thursday, October 2, 2008
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.
Tuesday, September 30, 2008
I don't think you'll ever forget the first time your hair falls out. It is like an anvil to the head. It's the realization that yes, I really DO have cancer. This hasn't just been a dream. I am a sick person.
Sunday, September 28, 2008
Perception changes when life is threatened. I liken it to getting your first pair of glasses- your moments are a blur and then, all of a sudden, clarity. At least, this has been my experience. I have no choice but to abandon past and future and simply accept the sharp, clear edges of what has been placed in front of me. The present.
My past is another person, another life. My future is so uncertain I can't even fathom it. Now "going through the motions" attains a whole new meaning: every sense, every small minute function of the body and mind is acknowledged and felt- savored, even- rather than abandoned.
just little things
the miniature matters.
Friday, September 26, 2008
The great thing about cancer is that the pharmacists know it's tough-times u.s.a for you, and subsequently send you home with enough painkillers and anti-anxiety/depressants that even wall street would be jealous. Suffice to say it keeps one adequately hammered.
The thing is, 95% of the time I'm sad and self-medicating these days isn't the fact that I have cancer... it's the same shit that's always made me a sad pathetic mess.
People who disappoint you before Cancer will still disappoint you after you have Cancer.
The things that hurt you before Cancer will still hurt you after Cancer.
The friends that listen to you bitch about your boy troubles will stick around to listen to you bitch about chemo farts, but you'd be kidding yourself if you think relationships will change and people will magically love you once you get some weird fatal disease. I know you've fantasized about it. Don't lie.
cancer girl still has the same achilles' heel as regular girl...
except now she has better drugs.
Thursday, September 25, 2008
I would really, really like for the cancer not to kill me too soon. It can kill me 40 years from now. I'd be totally cool with that. Is that too much to ask?
Wednesday, September 24, 2008
A friend recently called me "cancer girl" and suggested we hang out soon, "assuming you don't die of cancer". I know he was joking, but I was offended (please do not call me this). Cancer girl. Cancer girl... sounds like a superhero name, no?
I began thinking of my favorite comic book characters from childhood; mostly boys I thought were attractive (gambit, tuxedo mask, mmm) and then BAM! Nostalgia hit me like the proverbial H-bomb. I was obsessed with Tank Girl comics in my pre-pubescence and early teens. I would draw her incessantly, substituting the characters for my friends. In fact, my fashion illustration croquis today are totally reflective of this.
I saw in Tank Girl what I wanted to be as a grown-up: an untouchably tough nonsensical kick ass punk rocker ready to annihilate anything that stood in her way who still remained undeniably cute (remember camp koala?).
I wouldn't quite call myself this girl now. I went through my "I hate the world" phase back in high school and left it there. However, when it comes to this tumor, I feel some of this old idealism bubbling back up. The fighting spirit, if you will.
I completely see it when I look in the mirror: buzzed head, body scared, bruised, bloodied and bandaged from all of the blood draws, tank top stained from my inability to eat otter pops with the necessary au fait.
Enter Cancer Girl.
Tuesday, September 23, 2008
You know that Tom Waits song Yesterday is Here? The foreboding lyric "all our dreams come true" has been stuck in my thoughts. The idea that our conscious or subconscious dreams and nightmares will manifest, absolutely. The more we think about them, the more real dreams become.
I've always been terrified of cancer, the idea of something eating you from the inside. In high school, when my lymph node swelled up to golf ball-proportions, I was sure it was some kind of lymphoma. The nightmare was that cancer would strike me early, for some inexplicable reason. Cancer was up there with my "top fears", only preceding being eaten by a large predatory animal or getting stuck in an Egyptian sarcophagus as it crumbles down on me (major claustrophobia). Come to think of it, watching the Discovery Channel at the tender age of four was not such a baby genius idea.
be careful what you dream of?
or live like you dream?
"He was weary of himself, of cold thoughts and intellectual dreams. Life a poem! Not when you perpetually went around inventing your life instead of living it. How meaningless it was, empty, empty, empty. This hunting for yourself, slyly observing your own tracks- in a circle, of course; this pretending to throw yourself into the stream of life and then at the same time sitting and angling for yourself and fishing yourself up in some peculiar disguise! If only it would seize him: life, love, passion-- so that he wouldn't be able to invent it, but so that it would invent him."
What will my dreams and nightmares invent in me? I'm living them both. It is undeniably better to live through what you fear most, in your darkest imagination, because it becomes human experience.
Experience is the catalyst that takes us from smoke to fire.
And I will only accept fire.
Sunday, September 21, 2008
Check out ma weeeave... ok it's not really a weave but I like calling it one. Long hair is difficult. Shit gets stuck in it. I went to a movie today and kept dropping popcorn in it. ugh.
Tomorrow I'll be at the hospital most of the day for bone scans. Let's cross our fingers that it hasn't spread. I wonder if bone scans are as inherently joyous as CT's? I do know that I have to get a shot beforehand that will make my skeleton glow, which is pretty rad.
I apologize if I am late with calls/texts these past couple of days- my phone has not been proper and won't show my missed calls. Sucks being away from you all <3
Saturday, September 20, 2008
Four days later and I still feel weak, still nauseous and generally crappy. My tastebuds have started to go. It feels as though my tongue is covered in plastic wrap. I will be craving spaghetti all day, but after it's prepared I can't bear the taste or smell. I've lost a little bit of weight already, unfortunately.
I am NOT looking forward to cycle 2 (very much not antm), which will be 5 days straight of cyclophosphamide, etoposide, and ifosfamide.
To counteract the loss of white blood cells, I've got to give myself shots every day. For some reason (I of all people should not be afraid of needles) this freaks me out. Self-inflicted pain is no longer fun! praise be! Being the anal-retentive tard I am, I set everything out in front of me exactly the same way each time. like so. It is a little ritual.
While incapacitated and miserable have been researching some major lifestyle changes to aid in my recovery. Let me explain:
I have always put my body second. My goal for most of my adult life has been design and success at any expense. Work and school full time lead to stress and performance anxiety, which lead to depression, which lead to drinking, et cetera, a veritable smorgasboard of toxins and bad habits ensue. I am aware that none of these things caused my sacroma, but HELL. I even cancelled an ultrasound that would have revealed my tumor back in May because I didn't want to miss work at the precious and all-formidable Goorin Bros.
This isn't to say I haven't been "good". I've been vegetarian for the last six years, mostly cooking my own food. When I lived in the city I would walk everywhere. I have always been active and felt strong.
I have started yoga. Nothing impressive because I'm still fatigued- just 30 minutes every morning to stretch and breath. As time goes on I'd like to get into tibetan yoga practice- there is a temple here that offers classes in exchange for donations.
Fish. Yes. I'm going to start eating meat again after 6 years of strict vegetarianism. Fish only. I've always said I'd eat meat to survive, and now is the time if any. Omega 3's! I need to take so many meds as it is, I'd rather get my nutrients in natural, non-supplement forms.
In addition to the fish, I'm juicing the soul out of every vegetable I can find. For the enzymes, of course. Not because I feel omnipotent pushing little baby carrots into the bowels of hell.
Tuesday, September 16, 2008
I was able to see the cat-scans of my tumor today. It looks like this:
It is roughly this size. Rather like a killer tomato, don't you think? All the better to smash...
Monday, September 15, 2008
it's all the rage.
1st chemo sesh was mild- I feel nauseous and heavy now, much like a bad fever. In a way I can feel the poison flowing through me; my whole body pulses with my heart. My brain is too tired to make art. This worries me. For now, until the words begin to flow, I'll post more pictures. Remember the stilettos and red lips? Gone are the days of kaylin's vanity (for now). We ripped it right out of her.
Saturday, September 13, 2008
we hold on tight.
Friday, September 12, 2008
When I think chemo wig I think of this hot mama:
Or maybe even a little Raquel Welch? She models all of her own wigs! Bless her soul. This one is called "excite" and oh, does it deliver:
Most of the wigs were god-awful and all of them were light. I had to choose and order my usual dark color...
The operation for my port was performed last night. A port is exactly what it sounds like- a passage to a major artery to deliver meds to your bloodstream.
I was fully conscious for the procedure and my surgeon was a complete shit-head. He could tell I was in pain, shaking, crying because they had to try 4 times to shove the stupid thing in... and he wouldn't say a word to me. He'd just yell at the nurses to find him a smaller VAP. Now I'm all bruised and in incredible pain. Fuck that guy.
It's a great resource of information and I wish her well with the book. The community that I've been jolted so mercilessly into is incredibly inspiring- the more we are forced to confront our own mortality, the more selfless we become. Our instinctual urge is to ease the kind of suffering that one's own self has endured.
On said blog is a link to another blog, cake wrecks. examples below. The night of my diagnosis I made my mom to go buy me a whole birthday cake...
This is supposed to be p-diddy's b-diddy cake. I can only assume that's a fondant-elephant baby version of himself on top, but why is there also a picture of himself between his legs?
who will make me a "happy 1st chemo" cake? maybe with a little fondant bald head?