i am here, where are you?

today has been hard.

Since October my work-week has averaged 60-70 hours; I'm unable to take breaks/lunch because of the tremendous workload. I am paid (an embarrassingly) flat weekly sum as a freelance assistant designer for Betsey Johnson. This Monday I worked from 9:30am-2am, and on Tues had to be in again at 9:30am for our line review. This is not uncommon.

I've developed a cold that seems to linger melodramatically, and no longer have the privilege of free time or time alone (two very different and equally important things). I also find it hard to accept the severity of the industry-- everything must be done yesterday at any cost, and if you fuck up, it's your head on the neon-leopard-print platter. Fuck up = accidentally ordering a 16mm charmeuse instead of 19mm. Digging through an office load of trash to find a printout of a BOOT because your boss forgot to save the image to her desktop. I love the job but it's ridiculously stressful. And no health insurance, of course.

At times like these I wonder... whatthefuckhasmylifecometo?

And I realize that virtually no one I work with (except Betsey herself) has an iota of understanding as to what it's like to be a cancer survivor, to accept death, to drown in chronic pain, and try to continue on as "normal". I'm not normal, I'm another species. I can't relate. You can't relate.

Lately I've been mourning those few people I've met that could relate, and that made me feel connected. Devon, for instance. Diane. And this chap, Justin. Remembering him, I revisited his old blog and rediscovered his writing. I was still going through treatment when I started getting to know him, and I couldn't grasp his jaded-yet-reflective veteran perspective. Now I get it, and now his words sink deeper than ever.

http://superfluke.typepad.com/

here's something he wrote me that rings especially true right now, and brings tears to my eyes:


"I hope the best for you. I've been through a lot over the past five years of treatment and ICE was by far the worst of my experiences. How much of the bone are they looking at? The hip, right? I've been reading some of your blog. It's always weird for me to hear people say things like this but at the risk of sounding bland and uninformed... I love your words. I think we all get to a point when we think we are professionals and know all there is to know about this disease and it's effect on our entire beings. In my case, I have made this disease somewhat of a profession. However, I am always learning something new and regardless of how many times I've heard the same words from so many people our age - it is still encouraging to know that I'm not alone here. Whether it be my head in the clouds, my heart in the pit or my soul in the darkest regions of what seems to be the end of all creation, I know someone is floating close by. A blip on a map perhaps - but at times a beacon to find my way back to the mother ship. This probably makes no sense what so ever. But in plain English, I'm glad you still express yourself. And I'm grateful that I can witness that expression. Currently, I am sitting in the lobby of the National Institutes of Healthin Washington, DC, waiting for my cab to take me to the airport. From there I fly to Dallas, TX where I will stay for a week working 14 hour days on a fashion shoot. Next Saturday I return to NYC for the first time in four weeks to drop of some equipment, change out some clothes in my bag, sleep in my bed for a night and then return to DC for a week of radiation. It can be cold and dark and lonely out here. And every day is a fucking battle. I hope it's not too crazy that I write you. Feel free to do the same."


So Dusty, I am picking up where you left off in 2009, here in brooklyn, here with 14 hour fashionable work days, here trying to survive. I wish you were still around. Here's proof that sharing ourselves through words can reach far beyond our own lives.

{This blog seems to have become more "letters to dead people" than "cancer is hilarious". Do I relate more to the posthumous, or is it that posthumous writing grips us more intensely, knowing the mind that made it is gone forever?}

Suprise Disease

Listen to this haunting song by my friend & soul-mate-poetess Elaine Kahn-- I'm glad my suprise cancer inspired something so good.

I'm sorry for my lack of posts.

I've been working 70 hour weeks for the last 2 1/2 months.

I hope to pick up blogging again soon... there's so much to tell!

more soon.

faking illness cheapens mine.

I've recently found out that a fellow cancer blogger, who I have mentioned before, has been thoroughly faking the whole thing. I'd recently sent her a gift but hadn't heard from her in a week or so. She said she was in hospice and I thought she had died, quite frankly.

What makes me nauseous is that she used my blog as a textbook on how to have cancer. She studied my blog diligently, as well as many others. She took advantage of dozens of real cancer patients like you and I.

Here is a link to her (fake) blog.

I skyped with her, sent her texts and gifts. I treated her like all of my other cancer friends who were dying, with the utmost compassion and respect. We even talked about cancer frauds -_*

A quick google search turns up many more. CANCER IS TOTALLY TRENDING RIGHT NOW.

look here:

example A

example B

example C

and so on...

Fuck you, Cara Goodman of Sugarland, TX.

ps... unfortunately I am not faking.

beautiful passing

It is with a heavy heart that I announce another cancer friend's death.

This one is hard, because I've never met another cancerite who reminded me so much of myself; I loved her from the moment I met her last February through a mutual friend (you MUST meet Diane!). We bonded instantly, and when she had a recurrence (in the form of a rash-- weird, right?) we talked on the phone for hours about how difficult it is to be young and ill and to have your future snatched so suddenly out from under you.

Let me tell you of the awesomeness that was Diane: She was a historical fashion dynamo which none could rival. She knew her hemlines, decades and artists, a jabot from a cravat, and I looked forward to gushing with her about fashion's obscure geniuses. She published a magazine called Zelda (presumably inspired by Fitzgerald) about 1920's deca culture, of which several copies are still strewn about our house. Even though she was only 5 years older than me, I looked up to her as this monumentally beautiful, stylish, funny, intelligent, accomplished woman. She had a black bob, just as I did. It was like looking in the mirror. And, even when she had cancer, remission, and recurrence... she never stopped working towards her passions.

I cry as I write this because I am so utterly sad I wasn't able to know her better.

Diane died suddenly last week after complications with pneumonia, which was due to chemo and her lowered immunity. She battled aggressive breast cancer and recurrence.

The day I found out was the day before my fashion show, so, in my head, it was dedicated to her. Afterwards I spent time with her good friend J, and D, at our home. We talked & drank cider well into the night. Diane had told J that I was of great comfort to her, an inspiration, and that touched me deeply, because I'm not sure she would've ever said that to my face. These things are hard to talk about.

So, Diane Naegel, I am honoured to have known you.

I'm just going with the flow.

it probably won't lead me to happiness

but it'll lead somewhere, at least.

OT

here's some thing I helped do.

rachel antonoff spring 2012

rachel antonoff spring 2012

playing [cancer] detective

have you ever done this? Gone through every seemingly insignificant reason why you could've possibly gotten cancer, every other illness in your life, how they might be linked, because a part of you feels like your doctors don't know shit, or don't give a shit? Because you want answers that no one, save yourself, has the energy to find?

I do.

List of things wrong with me:

1. I was born 2 weeks early at 5 lbs via c-section.
2. I had asthma as a child.
3. I've had eczema my whole life (chemo cured it!)
4. At 14 diagnosed hypothyroid, hashimotos's disease
5. At 16 started getting chronic sinus infections
6. At 16 my lymph node on neck swelled up for weeks like a golf-ball (9 years later cancer is found in the same exact place).
7. At 20 diagnosed with chronic depression, which notably heightened at the same time each month.
8. At 20-23 suffered fevers and sinus infections monthly, as well as (or due to?) insomnia & stress.
9. flashes of pain start in pelvic area & are misdiagnosed as ovulation pain.
10. At 23- 7.8 cm tumor found, Ewing's Sarcoma left pelvis diagnosis
11. At 25- lymph node in neck swells up like in high school. dx thyroid cancer
12. At 26- sharp abdominal pain and heavy irregular bleeding are explained away as "your period" even though I've been in premature menopause for 3 years.
13. At 26- ovarian cysts (assumed benign) found on both ovaries.
14. Also found- sinus cavity cysts deemed insignificant in CT scans & left lung spot

**I left out all ailments related to cancer treatment, which is a whole 'nother beast.
****also omitted "things awesome about me", which would take up too many pages and probably make your eyes sore, or just your ego.


Currently:

-Ear/throat/tonsil/sinus ache. a cold? or EAR CANCER?
-Abdominal pain from cysts & free fluid.
-The usual chronic joint/muscle/bone pain.
-I'm nightmaring again. [PTSD rears its nasty head when you're the most stressed-- like today, I was slicing prosciutto at the deli, and the cut was uneven & slid, my pinky sliding with it. It wasn't too deep but bled A LOT, filling up my glove. I near-fainted and had a flashback of my sliced throat and that nerve pain... such a specific pain. A queue soon formed of disgruntled yoga-moms waiting for their post-workout-cheesewheel, so I sealed it with superglue to stop the blood, slapped a hello-kitty bandaid on, and went back to work.] But I digress.

I've come home from work now and can't stop thinking about my earache, cysts, throbbing pinky finger, problems problems problems. Always fear looming because I've gotten too attached to living again, having lived another full 3 years, working to the bone in hopes of future happiness. Wondering why it is that I must work so much harder than others... just to stay alive.



Anyone have a clue?

to assure you that I am not dead yet

or that someone has murdered me and is posing as me in text form, which is what my mother assumed.

I have just been so damn busy and broke. I go to sleep as soon as I hit the floor (because up until now I couldn't afford a mattress). Unfortunately there is no energy to wax poetic about the specialness of life, have a relationship, or f... un. fun? What does that mean again? Someone please save me?

Things I have been doing:

-interviewing 2 or 3 times a week. Everyone loves my work but won't hire because I haven't enough official experience. Apparently the school of hard knocks does not count.
-unpaid internship with R. Antonoff, which is surprisingly fun and gratifying, but kicks my ass.
-ehm tee vee filming and meetings, working with their ACT program to promote YAC awareness.
-finding a publisher for our comic (Last Gasp!), discussing a contract, and finishing the preview issue with Jon.
-getting scans, which showed no sign of disease other than an iffy lung spot and many large ovarian cysts thought to be benign. All kinds of pain from all kinds of work. Arthritis in my right hand from illustrating/writing/sewing.
-saw the McQueen exhibit on closing night, which was a transcendental experience.
- met Betsey Johnson yesterday and had a great interview, but still waiting to hear back. (!)
-creating a lesson plan for a Saturday fashion class for 7-12 year olds I will be teaching in September through November.
-kickin ass and taking names, but then forgetting them because I am too exhausted.


a few candids to prove I'm alive and relatively well:






these days I spend a lot of time waiting underground.

...

what's new with you?

On Wednesday I had 2 interviews and handed out resumes door-to-door, soliciting myself unmercifully (we will omit the ER bit).

On Thursday I helped Ambit set up their trunk show at End of Century.

On Friday I went to Planned Parenthood for a check-up, which is very much like waiting at the DMV.

On Tuesday I had 3 interviews in one day. In 5 hours I need to get up and get ready for another.

unpaid internship= check. http://rachelantonoff.com

blisters & bruises from lugging my 20 pound portfolio around Manhattan= check.

things looking up= /halfcheck.

so much has been going on the last few days & I will provide a full update soon, but I just wanted to say...

to the lovely readers that reached out to help, thank you SO much, it warms my heart and makes me want to return the love every day. I'll answer emails as soon as I can. I'm going to PP for a check-up tomorrow & will let you guys know how it goes.

most often I blog to vent, and I realize it must seem like my life is one stressful disaster after another (which is not entirely untrue), but please know that I'm very, very happy to be living my life.

more soon.

I'm having a mondo-crying fit right now. it happens occasionally.

I don't understand how I keep going on interviews and keep failing to land a job.

Even minimum wage jobs for which I've had years of positive previous experience with the Company, i.e. Crossroads, have turned me down. RETAIL JOBS ARE TURNING ME DOWN, not even the design industry.

I DON'T UNDERSTAND.

Is it the gaps in my employment history from having cancer/being in college? Is it because I'm honest about being in remission for cancer? Does that scare you, employer? Is it because I only worked at Bloomingdale's for 6 months during the summer, and Goorin for 8 months before they laid me off?

I really... I'm really discouraged.

I will not be able to pay for July rent. My credit line is maxed. I have $42 to my name. I have an interview on Weds that seems promising, but it's for an unpaid internship.

I'm doing the best I can, I'm showing up articulate, positive, absolutely willing to work, honest, with a resume and portfolio I poured my heart into and a smile on my face.

the reality? reality doesn't care much about me or my problems.

/rant.

live fully or surrender

I'm feeling really down today.

I went to visit an old school friend this afternoon at his studio, which was great; I forgot how much we had in common and I've always admired his knowledge of proper clothing construction. He is the professional I wish I was. So we were catching up, and of course it was requisite that I talk about my cancers. I explained the neck surgery, the chronic pain, my medication regimen, how I really want to find a job that offers health insurance. The documentary, and how I hope it will somehow help others. All with a casual insouciance that no doubt disturbs people who don't know me well. I may as well have been talking about a paper-cut.

But under all of those flat recitations there was a tightening of my chest, my eyes started to water, I felt a pain bubbling up within myself that was definitely NOT the Thai curry I was eating. Here's the comment that did it, and if you are a cancer survivor you've heard it countless times: "Wow, you're so strong! You're such a badass! Most people can't even handle normal life stress, let alone cancer". I know, I know. Believe me, I didn't choose to be a badass, it just happened.

I always think to myself, "If you had cancer you'd have done the exact same thing", but I never say it because people unanimously reject that statement. "Oh no, I don't know what I'd do!" Let me tell you: you'd do what you need to survive, you'd bear your pain and try your best, no matter how ugly and messy it gets. Everyone has to do it at some point. Cest la vie, and shit.

I'm not a badass, I've just had some bad luck. And this is why I'm feeling down today.

I don't want any more back luck for awhile. A central struggle for me since moving here has been the fear of cancer returning, just as I've made the life-changing decision to continue on with my career aspirations. I have hip pain, I fear an Ewing's recurrence. I have ongoing digestion troubles, I fear colon cancer. After you have two primary cancers, nothing is improbable. The rain-cloud looms incessantly overhead. Sometimes it chokes me.

I am afraid only because I am happy, because I have something to lose now, and to be cancer-free seems too good to be true. My instinct is to refrain from savoring the freedom and happiness I feel due to a sinking feeling, deep inside, that I must prepare myself for the next big storm. It's a struggle to get past this.

I will close with this, from fellow cancer blogger Cara/growthandtransition, whom I've been following lately and admire greatly for her openness:

"This tiny bird reminds me, still, that Courage has a face - it doesn’t come in feats of strength, but in fear and longing, in pain... I’ve come to the conclusion that we need not differentiate circumstance, only response. One person’s measly splinter may be another’s downfall. Regardless of experience or level of pain, everyone must make a choice to live fully or surrender."

(full entry here, check her out.)

homebody

just a few of my favorite views around the new apartment:





kitchen window looking out into a vacant lot, which is actually a rare wonderful thing.






growing up I had a very gender-neutral bedroom of yellow walls and blue carpet. I have been repairing the damage ever since.





found on the subway, keepin it just in case. magnet is my grandmother's old, it says "never too thin" but I think the bear has body dysmorphic disorder.


and yours truly trying to bear the humidity.


oh yes... I am feeling much better, save for a few aches and pains. I made an apt. with my local planned parenthood though, which does cervical/pap screenings for sliding scale fees, just to make sure everything's nothing. if you know what I mean.

p.s. I really wish this blog was formatted for big beautiful pictures

book club

I'm blogging more because I have no one to talk to here.

spending my nights in quiet solitude, which is so refreshing after living at the beach house and never having a minute to myself.

finished Goethe's The Sorrows of Young Werther and collected poems

now starting the Bell Jar again... this is perhaps the 5th or 6th time I've read it (typical, right?). I figure it's fitting for a lonely summer in New York. The only other book I've read as many times (once a year practically) is Jens Peter Jacobson's "Neils Lyhne", although I think I've grown out of his idealism.

I didn't have the energy or concentration to read during treatment, which is partially why we wanted to make a comic book. It's easy on the chemo-brain :)

have you read anything good lately?


oh yeah... my birthday is in 2 days; I will be the ripe old age of 26.

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.

when everything is connected

I've stumbled across the astonishing blog of Derek K. Miller, a tech writer from Canada who intimately chronicled his battle, and recent death, from stage 4 colorectal cancer. He was a mere 41.

I say astonishing because I find myself relating so closely to his insight, the way he adapts to his disease, his matter-of-fact logicality and humor. He was able to prepare for his own death, and even had a living wake- basically, one final chance to party it up. The last post on his blog was published posthumously a few weeks ago, a somber summation of his life and what its really like to die.

"I haven't gone to a better place, or a worse one. I haven't gone anyplace, because Derek doesn't exist anymore. As soon as my body stopped functioning, and the neurons in my brain ceased firing, I made a remarkable transformation: from a living organism to a corpse, like a flower or a mouse that didn't make it through a particularly frosty night. The evidence is clear that once I died, it was over."

I'm so grateful that Derek had the resolve to share his cancer with the world, with the infinite interwebs, with me.

It reminds me that this blog is important too, for just that reason.

So, some people are dying right now, and some are still fighting , but I am living. Really living, moving on, trying to forget the scarred past, the residual pain, the uncertain future. Filling my head with the scent of new summer rain on unexplored Brooklyn streets.

I can't forget it, but I can build on it. I will add new layers. I will stabilize my crumbling foundation like this old brick wall outside my window. Still standing, somehow.

I'm happy for every miserable second of my life.

Rest not...

"...life is sweeping by; go and dare before you die. Something mighty and sublime, leave behind to conquer time."

(Goethe)

environmental chchanges

The radioactive iodine 131 being found in rainwater from Japan is the same kind I had to ingest for thyroid cancer. Interesting. Does this mean I can go singing in the rain, holding my tongue out? Is this what my healthcare will come to?

Isn't it fascinating how we combat disease by prescribing what causes it? Radiation for cancer, inoculations and vaccinations for infectious diseases. We cheat death with his own devices.

The port removal was a great success. It hurt, but only in the moment, which is more than I can say for chronic pain. My surgeon was a professorial old black gentleman with massive white sideburns and a striped bowtie. He told the nurse all about the Prince concert he'd just attended. David Bowie's "changes" played on the radio in the background, which I am inclined to take as a good omen despite its ubiquitousness.

Here it is, looking rather like a purple heart:





The view today:




just so I don't forget it.

bad weather

I've just taken a bath. It's a ritual I am practicing more and more, a kind of cleansing of the self, a time for unhindered introspection, a warm moment. My baptism to the bed.

As I lie in the bathtub looking at the body below me I was struck by how similar it was to all other women, in shape, tone and size, my hipbone disfigurement barely noticeable now, just a lopsided permanent tan and some atrophied muscle. I feel increasingly alienated from my body, as though it's something entirely separate from my mind. It doesn't accurately express the disfigurement within, all that scar tissue and all of that pain. It's normal, it's not mine. It is the archetypal woman, it's not mine. If I expressed outwardly what was inside, I'd look like the elephant man.

I foundLucy Grealy today through a friend- she lost half her jaw from Ewing's Sarcoma as a child and wrote a book entitled Autobiography of a Face. She died of an opiate overdose in 2002.


Out of bath. Into warm bed. I am grateful that my body remains intact. Port comes out tomorrow.

ouchies

It is Monday, and my port is scheduled to come out this Friday. I'm going alone, as no one seems to be available to escort me. I'm hoping it will be much, much muuuuch less painful than the operation to have it put in, see this post from 2008.

For the insertion of the port-a-cath they only gave me localized anesthesia. I was AWAKE for everything, from threading the catheter into my jugular vein (terribly weird sensation) to the stretching of my skin for port placement (which was so painful I was tearing up, whimpering, telling the nurses I could feel it all... to no avail).

It goes without saying that I'm slightly nervous, but I've been assured that the removal will be easy. For those of you who have never had a port, or were lucky enough to be under and have no memory of the procedure... there are tons of videos on Youtube that allow you to experience it vicariously!!



Skip to 4:00 to see the painful part I still have nightmares from... no wonder the surgeon dubbed it over with dracula music. ah ah ahhhh.

apt statement.

question.

My fellow cancerites, bloggers, readers:

How do you stay strong enough to keep going?

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.

oh come on.

Heath Care Repeal vote passes house...

It's terribly ironic that this happened the day I was being interviewed about healthcare. I grew up with the idea that my culture inherently meant well and had some sort of moral compass. I am increasingly disillusioned. We are all so detached.

ok, I'm convinced that sharing my story will help somehow. I'll do it.

Kaylin: An Update

My doktor switched me to methadone for my chronic pain.

Scary sounding, huh?

The thing is... it really seems to be helping! I started last week, taking 10mg 3x a day. No crazy side effects yet besides grogginess, but of course, it's too soon to tell. @__@

I already have more energy, and I suspect it's because I actually woke up PAIN FREE today.

Thanks methadone!

here's my hair 20 months post chemo:



An opportunity has been presented to me that would allow me to share my story, in intimate detail, with millions of people. Is this good? Will this benefit anyone? Is my life even interesting enough to share? Hm. If the answer to any of those is "yes", then I'll do it.

Kickstarter: An Update

I am deeply humbled (and amazed) at the tremendous outpour of support we've received for this project. It reinforces the notion that we're doing something right -- something that will heighten awareness of the Young Adult Cancer community while simultaneously providing laughter and support. I am also REALLY FREAKING EXCITED!!! You'll be helping me focus on my health and creative output -- two things that I've been sorely missing lately.

I encourage everyone to keep spreading the word for this last week, even though we've reached our minimum goal. Every pledge helps us make it better -- I, for one, would LOVE to see this comic in full color!

Below is a picture of our workspace for the comic. We put up drywall to create a massive mood/story board to help us organize everything. Inspiration, jokes, working sketches, page layouts -- it all goes here. My sewing machines are even set up in the opposite corner! I look forward to sharing our entire process with you.

In conclusion: YYYYAAAYYYYYY!!!!!!!!!!!!!!!!!!!!!!!!!!!

oh and p.s.-- if we don't reach our funding goal in the next 14 days, the cancer comic won't be published, and the hundreds of fellow cancer-ites & YA foundations I have on my mailing list will not receive this awesome, wickedly funny, free work of art. PLEASE PLEASE PLEASE, share our kickstarter page! I still have a tiny bit of faith in humanity, don't make me lose it.

p.p.s-- I plan on drawing Dev in for a cameo.

;)
He's still alive in my head & we're still on this journey together.

confessions of a cancer patient

I've always loved confessional writing. From the very first time I read Sylvia Plath whilst in the scalding throes of puberty, to my current obsession with Joe Orton's diaries and Jonathan Ames' 2009 show "Bored to Death"... I've always found truth more interesting than fiction. Maybe it's a generational thing, maybe it's because my parents were so tight-lipped about their own lives and I needed something honest to relate to. I'm not quite sure. All I know is... I like reading about people's problems.

My guess is you do too.

I've been thinking a lot about Devon lately. He came to visit me here by the beach around this time last year. I played him some Velvet Underground, my go-to crowd pleaser, and surprisingly, it was all new to him. I was glad he liked it. [side note: Muse is playing on Pandora as I type this, which was his favorite band. I take this as an omen that it's permissible to write further...]

Devon is dead now. There's nothing entirely significant about this fact-- he battled Ewing's Sarcoma on and off from ages 19 to 28, his health slowly declined as treatment options ran out, and he died. We related to each other in ways that no one else possibly could, forming our own secret cancer club. We were both realists with a dark sense of humor, prone to depression, suffering immeasurably due to one stupid translocated chromosome. Here's looking at you, 22.

Devon was a bitingly truthful writer with an ascorbic wit, authoring essays that sucked the reader into his own personal hell of illness and the oft bitter loneliness that goes along with it. Not the most pleasurable Sunday reading, but important, I think, to the collective experience of humanity. Devon SUFFERED with a capital S-- more that I can even imagine. He removed his writing from Planet Cancer sometime before his death, so it is impossible for me to re-read his thoughts, mind, soul. You see, Devon was very protective of his personal revelations, and told me he didn't think most people deserved to read them.

He did something that I find absolutely terrifying- he left without leaving anything. Except, I guess, an impression on me. His confessions are lost to us. I regret not encouraging him more towards his end of life. I was not as compassionate as I should have been.

My point? Talented insightful people die for no reason all of the time. I repeat: NO REASON. You've got to create your own reason to live. And you've got to live as if everything you care about is dying. Because it will, eventually.

I never even took a picture with Devon, just this ugly grey seascape that we both shared for a small moment.

so... that was my confession for today.