Showing posts with label chemo' money mo problems. Show all posts
Showing posts with label chemo' money mo problems. Show all posts

Thursday, March 14, 2013

dreams less sweet


currently on my second week, 6th cycle of Irinotecan & Temozolomide.

six more months

and countless hours of pain & nausea

but we do it for that glimpse of light-- of living again. however short it might be, we soak it up.


tonight I am on a Gen P-Orridge lyric binge as I try to distract myself from chemo effects. Headphones on, too many drugs to name coursing through veins.

in the morning
after the night
we fall in love with the light

you can download a little chemo playlist of PTV favorites here. perfect for neutropenic fevers and astral projections.



Saturday, March 2, 2013

mtv is using my golden tears to raise cancer awareness, and I'm ok with that.




After the surgery last month I had to learn to walk again without part of my lung & diaphragm. The very first day they had me sitting up. The second day I took my IV pole, two vacuum-suctioned chest tubes, a portable motor that sounded like a shop vac and 3 nurses in tow for a walk (if you could call it that) down the ICU hallway. We even tried climbing stairs, but the tubes from my IV only allowed me to take 3 steps up, which I think would be manageable for even the most feeble degenerates among us. I stopped practicing the stairs after that. But I kept walking, and 3 or 4 days later I was doin' laps like lance armst--- I mean, like a pro. It's amazing how fast the body can recover.

After I was discharged from the hospital I went right into chemo cycle #5. I think the extra pain meds have made me extra nauseous this time. There are lots of other "extras" that pain meds give you, like extra hard poop. extra heavy eyelids. extra street cred. extra helpful friends.



For the last few days, Jon & I have been editing the final version of the comic. It's come so very far from the hair-brained scheme we hatched years ago. I had time to kill in the waiting room before one of my (many) doctor appointments, so I pulled out a test-print and started to read. In no time I was sucked into a colorful world that echoed, in a surreal way, the hospital around me and issues I was immediately facing. Jon's drawings are delightfully intricate; you can take your time on each page and notice new details with every read. I was disappointed when  my name was finally called, because it meant a transition from this magical cancer-comic world to real world-- and real cancer. Bottom line: great for making hospitals more bearable. I can't wait until issue #1 is finished.




I suppose I should mention: I will be featured on Season 2 World of Jenks on MTV, which premiers this Monday. The crew followed me for a year as I moved from San Francisco to NYC to pursue my career and a cancer-free fresh start. I'm horribly embarrassed about the whole thing, but I remind myself that I participated in this project to promote young adult cancer awareness and issues of survivorship. When I was first diagnosed I felt so shamefully alone-- my cancer happens to one in a million, and it's even rarer in young adults. The prognosis is grim, but there are a few survival success stories out there if you look hard enough. I wanted so badly to find someone I could relate to, someone to learn from, some lucky soul who had found the light at the end of the IV drip and was ok now. I wanted to be ok too, someday. What I needed was empirical hope. I needed proof through personal experience that my cancer was survivable, that pain is surmountable, that the future is inevitable. I needed accounts of young adults overcoming the physical & emotional upheaval of cancer so that I could be better equipped to navigate my own tumultuous journey. Trouble is, until very recently, people have rarely been encouraged to open up (I mean really open up) about Cancer due to negative social stigma, fear of vulnerability or judgment, or outmoded cultural mythologies of illness. Eff that, let's talk about it! Let's set the record straight and help the newly diagnosed. Empirical hope, knowledge, camaraderie-- this is what I wish to give others by sharing my story with MTV.





Hope creates strength, and with strength we can survive. to ride ziplines.


Friday, May 1, 2009

last chemo.

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One of the nurses brought me a balloon, which was quite touching. I did shed a tear or two.

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Now I'm lying on the living room floor intermittently puking and watching Showgirls. And slowly, sllooowwwly waiting for my hair to grow back...

Tuesday, March 10, 2009

miss misery

as soon as the ifosfomide begins to flow, so does the puke.

misery, misery, misery.

for some reason the drugs cause spasms in my lungs, making me hicup endlessly.

The mesna pump I've got to have hooked up to my port 24/7 does not help- I can barely sleep with the constant "katchha katchha" by my side, reminding me of my nausea and strange foreign poisions running through my veins.

One more month of hell.

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here is my baldy head.

Saturday, January 10, 2009

can't sleep because I'm too busy barfing

I have been consistently wretching and vomiting for the past 7 days straight, which I'm sure not many of you can claim unless you are equally afflicted with the cancer bug, or perhaps also malaria.

You adapt. It goes a little something like this:

"Hey, did you catch the GAME last Sunday?" (Because I watch games.)

"Whaa.. nooBLAAARGGGuhhgh. No, I didn't."

"Oh man, sorry. You need a towel or something?"

"Naw it happens all the... theBLEGHHAARGRGohholymotherofwhooa time. I'm totally cool. Maybe a napkin though."

See, I have it under control. come over and we'll have us a chat!

Tuesday, December 23, 2008

Alter Egos

The mutant radiation-chemo combo has given me the power of the Alter Ego. Observe:

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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!


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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?

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Tuesday, October 7, 2008

I will be in sf this weekend.

I feel so weak.

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.

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.
bummer.

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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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