Tuesday, September 30, 2008

On Sept. 28th, 7:30 pm

a chunk of my hair fell out as I was styling it for photobooth pictures.

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.

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Sunday, September 28, 2008

putt putt

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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.
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Friday, September 26, 2008

gonna work it on out

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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


Never youtube search your specific cancer at 2 in the morning. You will get memorials and it will scare the bejeesus out of you. And why are they all dubbed over with Celine Dion?

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

Adventures of Cancer Girl

The MRI last night was hell. Imagine being stuck in a tube with aliens bombing it from the outside and robots screaming in your ear for an hour. At least, that's what I imagined with my eyes closed.

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.

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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?).

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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.
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Tuesday, September 23, 2008

into the fire

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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."
-Niels Lhyne

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.

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Sunday, September 21, 2008

self-portrait today:

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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

Internal Affairs

chemo kicks your ass.


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.

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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 forget you exist, and then. here you are.

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I was able to see the cat-scans of my tumor today. It looks like this:

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It is roughly this size. Rather like a killer tomato, don't you think? All the better to smash...

Monday, September 15, 2008

the chemohawk

have you heard of it?

it's all the rage.

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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.

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Saturday, September 13, 2008

notes on friends

I can feel his body next to mine, smelling my hair, his arms around me in the most comforting way he knows how- and I realize he could be any number of people and it wouldn't be any different. I could be any girl. Our relation to each other is not the point- it is the pure necessity of having someone. anyone. Our need to be touched becomes heightened when we are in pain... we are living because we have to. The decision was not given to us. We do the best we can.
we hold on tight.

Friday, September 12, 2008

Wig Shop Baby

I will begin a 5-day/week chemo treatment starting Monday- My hair should start falling out in a couple of weeks, so... wig shop!

When I think chemo wig I think of this hot mama:
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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:
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Most of the wigs were god-awful and all of them were light. I had to choose and order my usual dark color...

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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.
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blogger cluster-fuck

I recently had a look at Kairol from planetcancer's blog-
everything changes

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...

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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?

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who will make me a "happy 1st chemo" cake? maybe with a little fondant bald head?

Wednesday, September 10, 2008

on trading sewing needles for hypodermic ones...

I have two self portraits today:
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The first is after emailing my professor to say that I'd have to miss real class tomorrow in lieu of "chemo class". I get my port put in tomorrow as well. One of the only things I can't take- the only thing that breaks me down- is the very real possibility that I won't be continuing school. I cry every single time I email my teachers.

I also got a call from the surgeon this morning- the cancer has not spread to my lungs. joy! We have two options: surgery or radiation. Surgery would involve taking out half of my pelvic bone. It would be years of recovery, and I most likely would need to walk with a cane. Radiation involves some very unpleasant side effects and the possibility of me turning into Rogue or having some sort of nuke superpower. Needless to say, I chose this option.

I am grappling with the issue of infertility due to radiation. It's fucking depressing, let me tell you, because I would make such a rad mom. They will save my little eggies for me just in case, but really, it's like having your womanhood stolen from you.

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Later on the sister and I went to the super AZN mega mart in south sac to buy ancient chinese secrets and jolly jelly shooters.

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always match your shirt to your trolley.

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I bought ol' san lazaro so I can light him up and meditate on the fact that at least I'm not that guy.

Tuesday, September 9, 2008

Picture of the day:
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Today I went in for CT scans to see if the cancer has spread to my lungs. CT scans are like a really shitty amusement park ride- you hold your arms out above your head and hold your breath for... nothing really. The bed moves a couple feet. I want my tickets back.

My conversation with the technician went as follows:

her: "You have cancer, right?"
me: "uh, yeah."
her: "oh but you're too yooouuung to have cancer..."
me: "that's what they tell me."
her: "do you smoke?"
me: "no."
her: "see, that makes me feel so bad (laughs). I smoke but you're the one with cancer."

ahhahaha hilarious, I know.

Monday, September 8, 2008


I have decided to take a self portrait every day from now until remission. My appearance will change, I will have highs and lows, my poses will refect what mood I'm in. In the end, I hope to compile all of them and use them as some sort of art project.

Here I am with dirty hair and no makeup, about to go to my first appointment with the oncologist Monday afternoon.

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Hair, eyebrows, eyelashes, awkward slight happiness. I have a feeling this will change in the months to come. I start a rigorous chemo and radiation plan next week...

Friday, September 5, 2008

Last Weekend of Freedom, part 1

This past weekend was my last of relative normalcy in SF. I went to my first day of school- senior collection- with a weight on my shoulders that was unrelenting. How will I tell people? Will I have to quit school? What will my professors think? Fashion design is my livelihood, passion, my entire identity. Without this medium of expression my life feels pointless. In short: I WANT TO FINISH SCHOOL, regardless of cancer. I felt welcome and accepted by my peers and teachers, which was a great comfort. I can do this.

I am learning quickly how to deal with people who have just learned you have cancer. The response is often awkward. People are sympathetic, of course. Overtly so. They like to tell me about their gran or aunt or boyfriend's stepmother's friend's dog that got prostate cancer and died and shit, was that sad, that dog was so cute.

I find the most helpful reaction is a sincere "my thoughts are with you" followed by something funny about fake hair or du-rags. No stories of old people you know who died, no "but you're too young to have cancer" (how on earth is that helpful?), and DEFINITELY no "I'm so sad, you're making me cry, why me?". Why you? If I can deal with it, you can deal with me dealing with it.

I remember when my friend Sara told me she had non-hodgkin's lymphoma when we were attending community college. I was shocked at how stoic she was. All I could do was ask questions about treatment and say "I'm sorry to hear that, I hope you get better." I get it now! We have to tell 50 million people the same story over and over. It gets easy. Dealing with people's reactions does not...

Wednesday, September 3, 2008

Quote of the Day

"See, this is why I don't believe in god... totally rad awesome sexy girls get cancer but kelsey grammer gets a fucking emmy?!"

Tuesday, September 2, 2008

Livejournal Post, 9/2/08- The Diagnosis, dun dun dun..

Kaylin Marie has cancer at 23.

I always knew I had a crappy immune system, but really, I thought I'd last a little longer. I get to see the oncologist on monday so they can "stage me" and see if it's localized or if it has spead. I will likely need surgery and chemo.
I am an agnostic but... pray for me just in case?
It is an ewing's sarcoma. wiki says:

Because almost all patients with apparently localized disease at diagnosis have occult metastatic disease, multidrug chemotherapy (often including ifosfamide and etoposide)[9] as well as local disease control with surgery and/or radiation is indicated in the treatment of all patients.

Treatment often consists of neo-adjuvant chemotherapy generally followed by wide or radical excision, and may also include radiotherapy. Complete excision at the time of biopsy may be performed if malignancy is confirmed at that time. Treatment lengths vary depending on location and stage of the disease at diagnosis. Radical chemotherapy may be as short as 6 treatments at 3 week cycles, however most patients will undergo chemotherapy for 6-12 months and radiation therapy for 5-8 weeks.


Staging attempts to distinguish patients with localized from those with metastatic disease.[12] Most commonly, metastases occur in the chest, bone and/or bone marrow. Less common sites include the central nervous system and lymph nodes.
Survival for localized disease is 70% to 80% when treated with chemotherapy.[13] Long term survival for metastatic disease can be less than 10% but some sources state it is 25-30%