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.

cancer comrade or internet impostor?

I'm taking a break from my break to warn you about this growing compendium of losers:

(image from Gawker's own article on Warrior Eli)

http://warriorelihoax.wordpress.com/

Be wary of cancer fakers, my friends! Trust your intuition & arm yourself with the knowledge that, yes, there are people out there that lie about this stuff.


From my own personal experience, here are a few "tells":

1.) People lying about cancer online often add inconsequential medical jargon to their stories to make them seem more credible. If you're a cancer survivor, you can usually sniff this out fairly easily-- do the diagnosis/treatments add up? Is their story *almost* too outlandish to be true? Does it sound like they're getting cancer treatment from Wikipedia General?

2.) Cancer Fakers almost always place extreme emphasis on exact dates-- i.e. "I was in remission for 6 years 4 months 8 days and 41 seconds exactly before I relapsed and had surgery at eleven-forty-five-pee-ehm on Tuesday December 12th 2012 and while they were taking out my malignant tumor I gave birth to a beautiful healthy eight-pound-thirty-two-ounce baby girl who's birthday is now 12-12-12 which is also my great-grandmother's birthday and therefore a sign of luck that I will beat cancer miraculously". Somehow they all think this will add credibility to their scam. You know you'd be too groggy to remember that shit. Or care to repeat it at all.

3.) They have brand-new Caringbridge, Facebook, Tumblr, Blogger, and charity pages that pop up immediately overnight. Usually this happens organically, over time, through family members as the *real* patient goes through treatment. Look at the wording, sentence structure, and misspellings of the entries and comments. Do they ALL seem to come from the same person?

4.) On the topic of family-- Cancer fakers usually make theirs up. Often with really stupid trendy-fantasy names like Gideon, Elijah, Braiden, Destinaijah, Meridian. It tends to reek of a tween girl's discarded game of MASH. There are Fakers who create sock-puppet accounts on social networking sites for an entire fictional support circle in order to boost credibility. Seriously.

5.) The pictures posted are all closely cropped, purportedly in a hospital, but you'll never see machinery or an IV pole (which, as we know, becomes inseparable to us during chemo). Look out for STUBBLE on a supposedly bald-from-chemo head, and acne/redness in the cheeks, which chemo absolutely does away with. Chemo makes your skin clear & pallid. Cara had red, craggy acne all over her chin--I shrugged off clues like this without even raising a (newly grown in) eyebrow.

6.) They readily publicize an Amazon wishlist or pry for gifts/money/sympathy. The majority of Cancer Fakers seem to be young, very bored, insecure girls with nothing else going for them & probably not much love in their lives. boo hoo. Get a hobby.


Has anyone else had an encounter with a Cancer Faker?

**Please do not take this list as definitive "proof" that someone is lying about having cancer-- it is meant only as a mildly amusing guide to help you identify predatory behaviour and avoid being duped. Use your intuition & common sense out there in the YA cancer community! 

For that Badass, Becca Babcock.

Last month I was perusing the blogs that I follow, and I was sad to realize that our Becca is gone. I say "our Becca" because she was a vocal (and super-awesome) young adult cancer blogger, who shared her journey and followed along as we shared ours. She was part of our collective voice, and she will always be, thanks to her writing.  I am extremely touched that her mother continues to post her journal entries, so that we may benefit from Becca's private insight. I have years and years of journal entries just like Becca's, and I would hope that my mom would do the same. I think our shared goal is always: I want to be of benefit. I want my life to mean something to someone.  I think that by sharing our deepest fears and pains, we can accomplish this in an especially intimate way.

I met the fiercely intelligent Becca in 2008 through Planet Cancer. She commented occasionally on this blog and she always had good advice. I guess it was as if she'd done 5 successive tours of duty-- she'd been at war for awhile, and she knew the ropes. We all exchange battle stories, but in the end it seems we still feel hopelessly alone. We fight alone. Nevertheless, there are things that Becca wrote, privately, that make me feel not-so-alone:

"You know what one of the most awful parts of cancer is? Knowledge.Of course, that is an odd statement, because at first I would be inclined to say that is one of the gifts of cancer. When trying to appease myself somehow with the thought of cancer and all that it entails, I would find a very small amount of comfort in certain knowledge that comes with diagnosis.That knowledge includes things such as: I KNOW the true meaning of the phrase 'Life is Short'."

[I often feel that I "know too much" for my own mental health, due to what cancer has taught me.]

"I think often how I don't think I'll be alive very long. not like I think I may keel over, say, tomorrow. but unless a miracle happens very very soon, I feel inevitably, I'll be defeated :(  (incidentally, it's now tomorrow & I didn't keel over...). I sometimes wonder why i can't just get it easy & fall asleep one night & just not wake up? I wonder if people that has happened to, if they could ever appreciate how lucky they are to have that happen. they not only have no idea that's coming, they don't have to spend time agonizing over unfinished business... they don't have to worry about the pain and suffering associated with a sudden violent death. I really envy those people. Anywho, I'm kinda just weary on life today. I can't wrap my mind around my life at this time. I don't seem able to find motivation in order to "care" about things. & in general...I'm just tired of people. normal people. they bother me without even trying or attempting to. oh, that, and it's back to cold.  BAH."

[link to Becca's amazingly articulate, literally bad-ass blog here]


I want to dedicate my life, somehow, to young adults with cancer-- there is nothing else I feel passionate about anymore. I've spent the last few months in an incredibly deep depression. It has been difficult coming to terms with life in the afterglow of cancer. It has left an indelible mark of uncertainty and finality upon my life. It has left physical and mental pain that has yet to resolve, and at times is overwhelming. I am still searching for a life after cancer. Turns out it doesn't just come to you naturally, like breathing, as one would expect. You really have to fight for stability and your own ideal future. You have to come to terms with the knowledge you've been given-- that pain endures, and death is imminently unknown, and therefore life is precious and bullshit is insufferable. Right now, that's what I'm working on. If I can get past those things, and stay healthy, I'll be golden.

I am unsure what role I will play in cancer advocacy, but I'd like it to be an ongoing goal. For now, Jon and I are continuing with our Cancer Comic. If things go as planned, we should have the entire graphic novel finished by September, just in time for the MTV documentary to air. We are adding some of my personal writing to the final publication, and I've been thinking about opening up a submissions process to allow fellow cancer writers and artists to be published. Thoughts? Anyone interested in submitting an essay or illustration to Terminally Illin? I feel that it could have a monumental effect on the future cancer community if it became a communal, collective effort... but I'm unsure of how to facilitate this.

I am also planning on being much more active here on CIH, because I've realized that my writing continues to positively effect people's lives. I want to say that I appreciate immensely the feedback that my readers give-- there are many visitors largely unknown to me that have been following my story for years, probably out of morbid curiosity, but also out of compassion and a genuine appreciation for human expression. People like me, people like Becca. People like you. Let's keep sharing, no matter what.

Interesting article about the difference in survival rates of pediatric vs. adult patients. It mentions Ewings Sarcoma and ALL, among others. Statistics are so terribly enticing- I know I shouldn't read on, but I just HAVE to...

"...for teenagers and young adults like her, the prospects for survival had barely budged..."

*EDIT*

This link is MIA but if you search for the file "InTheirPrimeandDying.pdf" you'll be able to read it in google reader.