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.

May: cancerversaries, birthdays, and NPR shits & giggles.

May is both the anniversary of my release from the Abu-Graib of all cancer treatments, and my birthday-- the one where I turn 27 and lose the health insurance I had through my mom. It's a complicated month.

Here's the post from my last chemo, May 2009

I've been thinking a lot about after-care. It's been two years since my last cancer remission, and I'm only just beginning to see a therapist to unload all of this emotional baggage I've been carrying around. It's hard to get [free] help from resources like cancercare.org and SamFund because there's so much red-tape & many, many exclusions.

I am of the opinion that everyone should stop mindlessly running, walking, and buying for Cancer Non-profit Monoliths who have lost their way... who have minimal outreach services compared to the millions they make as a non-profit organization. They profit from our collective guilt and ambivalence. What we should be doing is investing in finding a less invasive, less brutal way to cure cancer, and providing palliative services for the millions of young adults dealing with the aftermath, as well as studying the long term effects.


As of now I don't have health insurance, and that's really scary. I should have never gone to art school. I've racked up a few medical bills so far, which of course I can't afford to pay and so they go to collections, where they will languish until I either die or become filthy rich. Thank god for HHC and Planned Parenthood!

Despite everything I had a very nice 27th birthday. We went to Coney Island for the first time, rode rollercoasters til we were dizzy, ate icecream, and saw a guy wearing a shirt that said "SIT ON MY FACE AND I'LL GUESS YOUR WEIGHT". All in all an enchanting evening.

blending in 

I was on NPR's The Takeaway this morning talking about the comic, and I was so focused on trying not to use "fucking" as an adjective, as I am wont to do, that I said "shitting" instead. I also completely forgot what I was talking about several times & totally derailed. 7:45am is a fucking ungodly hour to be articulate. I refuse to listen to it, but you can find it here. Don't judge me dudes.

I laugh everytime I think about Celeste's face as I mention how funny vomit and shit can be.

PSA: being a cancer survivor is fucking cool.

Couple of things:

1.) Our kickstarter has four more days left-- get your butt on over there if you'd like some hand-made cancer merch! (I tried the scarves on personally to make sure they'd fit bald heads everywhere.)

Right now, Jon & I are fleshing out the "Cancerland" chapter of our comic-- there are just so many parallels to be made between amusement parks and cancer. For instance, both require you to waste an exorbitant amount of time waiting in lines. Both involve riding scary machinery, causing you either to giggle or puke your guts out (or both simultaneously). Many jokes will be made about CT scans (hold your breath, exhaaaleee), MRI's, and radiation lasers. We'll have an old-timey side-show freak section as a nod to our Last Gasp publishers. Every backer gets a ticket!

What would be your ultimate Cancerland ride? The grossest one I've thought of so far is Splash Mountain: the colon-cancer log ride. That one's for Becca. I'll fast-pass it to the front of the line every time.



2.) i2y is having its annual Stupid Cancer Ungala on June 7th here in NYC. If you're in the area, I'd love to meet you there. I'll be handing out copies of our preview comic, commiserating, and getting sloshed. The only thing I disagree with is this whole "no black tie" business-- I'll be dressed to the nines as usual.

About Our Comic

I want to make a post to let my readers know about our comic-book project that was funded by Kickstarter last year, and I want to be very direct & honest, as usual. We grossed $7,000 in funds to finish the project, and this went into our living expenses for 3 months as we worked, supplies for backer prizes, and supplies to produce a professional comic, including drawing materials and a scanner.

The plan was to have everything done by the time [ehm-tee-vee] airs a documentary series focusing on my life as a young cancer survivor. The show also covers our production of the "preview" comic & how we found our awesome publisher.

Unfortunately, our money ran out before we could finish the book. The reasons for this are many-- some personal, some not. Originally our goal was to publish a 26 page comic. But as we went along, Jon, our illustrator, wanted to make it bigger-- 100 pages bigger. I have always expressed my concern over this, that we should edit to stay in budget & meet our deadline. Jon is very enthusiastic about this bigger, more involved comic, and assured me that he'll finish the illustrations. I share his enthusiasm, because the story & potential to help people is great. However I feel very uneasy about asking the community for more money to finish this project.

The money would go to backer prizes, and Jon's living expenses as he finishes this 100-page comic.

What do you guys think? Do you want to see another Kickstarter fundraiser, or are you happy with the "preview" comic we have published? The story that Jon & I have developed has a lot of potential, and I want to see it finished. But is asking the cancer community for another $5,500 morally acceptable? Am I reading too much into this?

I would really appreciate your input. I feel the project was somewhat mismanaged, and I am partially to blame for this, because I've got a lot of other cancery things on my plate-- I don't have the energy to micromanage. I put it all in Jon's hands, and although he's done an amazing job so far, the scope of the project has overwhelmed its creators.

thoughts? I want this project to be for you, and I want you to have a say in its fate.

here is a link to check out the new project.

Thanks for reading, guys!

my heart soars on the streets of Brooklyn

(via josh derr flickr)

So, I am here, fucking finally, after 2 years of failed planning, doubt, and illness getting in my way. I mean, it's still in my way, but from now on I'm going to be that rude bitch on the street that just elbows past it, never even looking back or apologizing, because I HAVE SOMEWHERE I NEED TO BE. So there.

(It's taken me a very long time to get to this point.)

I've had a lot going on lately. A documentary crew, which I am forbidden to speak of, has been following me since late April. They even filmed my flight here with iceman. It's incredibly surreal and exhausting. I'm doing this because I hope people will benefit from it in the same way as this blog; here is a girl you can relate to, whose had struggle and suffering and pain and is somehow stubborn enough to keep pursuing a dream, and most importantly, willing to let you into her life. Seriously, everyone is welcome. I invite you all to share my life with me. I feel it would be a waste if I didn't share it.

My health is stable right now. I'm currently on an oxycontin/codone regimen that works well enough. I'm not pain free, but I can get out of bed in the mornings. It does make me drowsy & I'm trying to get an rx for Nuvigil, which my doc said would combat the fatigue. Has anyone tried this? I worry that I won't have the stamina to work the normal 8-12 hour days required in the fashion industry. We'll see... I need to secure a JOB first, a task I am finding heartbreakingly difficult so far.

Keep trying, keep working, keep moving. Keep your chin up, kid. Many, many artists and writers that I admire struggled with countless rejections and few published works during their lifetime. The shared human experience is surprisingly consistent.

The comic is going well, I have left Jon with all of the final illustrations and we are preparing to finally send out backer prizes, yay! We are planning to release the 1st issue in conjunction with the airing of this "documentary series" who's name we dare not mention.

What else? I'm enjoying the beautiful weather and my working body, walking right foot, left foot, cognizant that I might not have the chance someday. Happy despite great faults. Hopeful to nurture new friendships and meet kindred spirits. and stuff.

that pretty much sums it up.

blogaphobia

When ever I haven't blogged for awhile I get anxious, thinking I have to blog, enduring a massive writer's block and forgetting all of the things I wanted to say in the first place.

meh.

I've taken a few weeks month off to attend to personal issues, i.e., the rearranging of my life. I've made some progress. I am short one life-partner at the moment, which saddens me. To stuff the pain I've also been purchasing an unfortunate amount of socks from this store.

Our project has been funded and we're delving deep into the world of comic book production, from learning spacial layouts, to composing an epic story with a slight (hopefully not too cliché) nod to the hero's journey. As we come up with new ideas, the story keeps getting richer, more coherent, more inherently awesome. I really can't wait to see it in its final form.

In addition, I'm designing a small capsule collection of metal free dresses & separates to go with the printed scarves that we offered our backers. These pieces are meant to be an alternative to the lowly hospital gown, but beautiful enough for a night out. We plan to launch the collection and comic together. Ok, enough gushing!

Here are a few photos of my sketchbook and our project board:

Health-wise, I've been having the same problems-- scar tissue/nerve pain, GI issues such as vomiting, cramps, weird BMs, depression, and many side effects from the methadone, which consequently makes everything else worse, I suspect. Side effect I hate most from methadone: sweaty palms!

I'm still on the hunt for a pain regimen that works.

Had a lung scan last week and I'll see an oncologist about it on Wednesday.


That's about it for now. très intéressant, I know.