Sunday, November 30, 2008

Sometimes you are forced to take a step back in order to move forward.
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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

get this...

I am about to go see not one, but TWO different friends today

-all alone
-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.

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...even if it is just coffee. come visit me!

Monday, November 24, 2008

death and diners

I weighed myself today- 130. Down from 145. I am officially skinny. I think I was this weight at age 14.

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.

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Friday, November 21, 2008

a little more truth...

Holy crap, this video made me cry so hard.

all I can say is... exactly.

I haven't been able to walk since last Friday. I am so relieved the pain finally went away a couple of days ago- being stuck in bed is so disheartening.

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.

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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 don't have much energy for a full post, BUT

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


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My vivid dreams are always of the day I will be free of chemo.

a lesson in physics.

I will know the results of my new bone and CT scans tomorrow morning before chemo. It is always harrowing waiting for scan results- is the mass shrinking? Miraculously gone? Or has it spread to my lungs and I have a month to live? My disease is so fast-moving and under-studied that no one can make an accurate prediction. We will cross our fingers and wait.

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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?
Would you?

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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

fantasy cup finals

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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

It's time for the "if I could make a wish" make a wish dream date debate. 2008!!

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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!

who should kaylin go on a celebrity date with?
joel mchale
mo rocca
some other dude (add an option)
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