Lifelines

Here's the plan:

I am to get 12 cycles of chemo-- 2 weeks on, one week off, over the course of a year. I have 10 cycles to go. During this time, due to the Irinotecan,  I will feel weak, nauseous, and have extreme abdominal cramping. I've already lost most of my hair, so 2013 will be a relatively hairless year. I get infused from 9am-12:30 daily, and am then left to my own devises, which usually means sleep and netflix. I want to find income of some sort & am (very tentatively) considering re-opening my etsy shop & sewing up some samples.

My bills from the epic one-week uninsured stay at Bellevue add up to over $6,000... I haven't looked at all of them, to be honest. You'd think for 6k I'd get better inpatient meals than a corn muffin and a saran wrapped piece of american cheese on a styrofoam plate, as I was served for breakfast one day:

If you'd like to help out with my egregious debt to the City of New York Public Health Services, please click the donate button to the right-- I need all the help I can get right now and I left my shame at the infusion room door. 

I had to cut off my hair a few weeks ago & it was more emotional than I thought it would be-- presumably because I hadn't cut my hair since it started growing back in 2009. That hair represented 3 years of remission, now gone. I saved the braids, I'm not sure why. I labeled the bag "RIP Kaylin's remission, 2009-2012".  It was a private affair, no camera or chemohawk, which would've felt cheap and exploitative to my tresses this time around. Something has changed. I'm no longer documenting my treatment with nervous excitement, I don't feel like making fun of everything cancer-related. I should change the name of my blog to "Cancer is Annoying as Fuck, Please Leave Me Alone (the cancer, not you)". 

pre cut

back to bald

So here I am in purgatory again, the space between. I'm resigned now to the idea that my cancer is a chronic affliction, something I will have to deal with on and off until I die. I am a professional cancer patient. This is my fate. On my left hand my lifeline splits dramatically in half, with each end arching in different directions, away from each other . When I was a kid I wondered what this meant-- would I be in a car crash half way through my life? Would I almost die? The thought was terrifying. Now I know: it represents life before cancer, and with cancer.

Now I just need to learn to live with it. 

please let this be true.

nothing creative to say, just that a little cancer came my way.

Welp. Nothing lasts forever, not even N.E.D.

I have been diagnosed with a recurrence of my original Ewing's Sarcoma from 2008. This time the tumor is growing from my right lung pleura and is completely taking up the right side of my chest, pushing on my heart. It's roughly the size and shape of a dinner plate, which is to say... it's HUGE. Over the past few weeks I've had a chest tube put in (thankfully out now) to drain 3 liters of fluid from my lung. I've started chemo, which seems milder so far than what I went through three years ago. Still, the side effects remain, especially weakness & vomiting, my dear old friends.

Right now I'm being treated at Sloan Kettering thanks to the hard work of my dedicated family, friends, and... Medicaid. I cannot express how magical SK is, especially Pediatrics, where I am being treated. It's like the Disneyland of cancer wards. I feel I'm in the best, most capable hands possible.

My next chemo is on the 19th, just in time for Thanksgiving & watching everyone around me eat delicious food while I desperately grasp the puke bucket. Each cycle will consist of 10 days Irenotecan and 5 days of some other drug I can't remember. I won't know of any progress (i.e., is it working?) until after my second cycle. This will go on for 12 months, with breaks for radiation and surgery. Yes, I get it all this time!

I promise to keep you all updated, but please keep in mind-- sometimes I don't even have the energy to write. There is an apathy that falls upon you after your 3rd cancer diagnosis. I saw it happen with friends, and now I understand. Why bother to write this time? Haven't we been here before? Why am I suffering through this again?

Hi everbody, I have cancer again, awesome right?

I'm waiting... still waiting to let you guys know a definitive diagnosis. It will be soon. Currently applying for Medicaid in hopes that I can get into Sloan Kettering. It's been 3 months now that I've been experiencing symptoms, which have gotten progressively worse, to the point that I find it hard to walk, eat, sleep, breathe. If I had insurance I'd probably already be in treatment right now, a sad thought. I'm in a lot of pain, but the Public Health Hospitals here in NY (even the oncologists!) are not allowed to give an opiate-tolerant patient proper relief. For a tumor the size of a small cantaloupe, they're only allowed to give me 5mg oxycodone. That's one step above giving me a rag to clench my teeth on, so I'd say Bellevue has made considerable strides these past 100 years.

 I've been listening to the This American Life archive recently and comedian Tig Notaro totally hit the nail on the head for me, what I've been feeling, a weakened but still bitingly sarcastic "great, now what." She's funny. Listen to it.

I will update you completely after I get my (hopefully) full diagnosis this Weds. Until then, feel free to send me your "awwwwww"s.

delirium

I'm kind of delirious right now due to pain, lack of sleep and general malaise, but I remembered something:

Sometimes I get so wrapped up in my own personal world that I forget that great call of duty to express the tiny scrap of knowledge I've gained in this hard-knock-life.

Mini Update:

-- been in the process of applying for disability since June & still waiting...

-- aged out of my Mom's health coverage in May, have been uninsured for almost 4 months. (feeling very grateful to have had it at all.)

-- have since waged a mostly failing (and flailing, at times) battle with NY public health services, HHC, SSA, ETC ETC.

-- illness is a full time job, my friends, and I've been killing myself just to support myself. The American Healthcare System is beautiful in that way! It's a mystical paradox that, with a little bit of faith, we can all buy into. Just like... oh shit.

-- due to no insurance, I stopped my chronic pain regimen. plus: clear head. minus: pain.

-- been to the ER several times in the last few months due to ongoing medical issues that I KNOW are symptoms of my body fighting something... been dismissed just as many times.

-- as a last ditch effort for help, went to the ER a few days ago and dramatically exaggerated my symptoms: crying, coughing up a storm, limping, gasping for breath, clutching my side. All real symptoms & reactions, mind you, but normally I'd hide them and stay classy.

-- FUCKING FINALLY they give me a chest x-ray. I wanted to bow down to the tall nordic resident physician who suggested it and kiss his shoe in a gesture of gratitude, but that would've been icky.

-- I have a softball sized "thing" in my chest cavity that is "probably a hernia" but "might be a tumor". As we all know by now, this means "probably tumor but I probably shouldn't tell you that".

-- CT scan scheduled for next Thursday, and I will know more then. How much is a CT scan, exactly? Just add it to my tab.


In Conclusion: I will be posting more soon & I might regret publishing this in the morning.

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! 

hello old friend

I haven't posted in a few months, why?

I've been going to therapy since May & have made an important personal discovery: almost all of the problems I've had in my life, whether it be with work, friendship, relationships, mental health, everything-- all of my choices in the last 20 years-- have been due to my low self-esteem issues. Have always been due to low self-esteem. I'm tempted to write an entire dissertation but will just leave it at that.

I wish someone had told me this 10 years ago, but alas. I had to figure it out on my own.

So, it's been necessary to work on other things besides this blog & cancer advocacy-- problems that existed before cancer, but have been exaggerated by the trauma of chronic illness. For years now I haven't been able to put my finger on my own unhappiness. I'm starting to get it now.

this book is written for middle-aged housewives but totally changed my life. 

I have been freelance designing and am still looking for a stable job. Still waiting for a disability decision. Still in chronic pain. Still don't have insurance & have been turned away from care several times because I can't pay out-of-pocket. I've looked into getting insurance through the freelancer's union but they don't accept pre-existing conditions (yet). what bullshit.

Still trying to figure it out, 3 years later.

On a positive note, here are two rad girls that have both survived Ewing's Sarcoma. I met Melissa at the beginning of the year and already feel so close to her-- like a sister. She found me through this blog, which is true confirmation that I'm doing something right by sharing my life. Feels like fate. I'm so glad she reached out to me. Another one of us in remission, fuck yeah.

I'll figure it out eventually.

June & July have been full of the usual minutia of a young, broke(n) cancer survivor trying to earn a living in a creative field. Mainly... looking for jobs, interviewing for jobs, doing unpaid projects for jobs, and then not being called back, ever, for jobs. On the upside, my portfolio is bangin' & every time I do unpaid work for a company it increases its bangin'ness.

The downside is that I can't afford a living, still. Barely making it through rent every month, barely paying my cc minimums, barely affording food (I usually dig up quarters every evening to buy some produce for dinner from the local bodega). Forget about medical care, because I have none. I had a sinus infection a few weeks ago that required treatment, and luckily I was able to find a great Free Clinic here in Brooklyn that would dispense antibiotics at no cost-- the catch is you have to wait 8 hours to be seen just like the other 30 people in the room. Doing that once every now-and-then for an emergency is totally bearable, doing it every time you have a medical issue? not so much.

Honestly-- everything I've been going through is normal for someone my age with self-inflicted creative goals. I could've been an accountant, right? (yeah right.)

I knew it would be difficult moving to NY and I did it anyway. Struggle is requisite to personal growth & fulfillment, I say to myself as I try to avoid conversation with the homeless gentleman with gonorrhea seated next to me. We both left that day with a gigantic gift baggy of condoms & lube, swag from the city health initiative. I hope he used his, and not just for water balloons like I did.

What I didn't bargain for, here in NY chasing the design dragon, was Cancer. If I could've known about my future cancer/chronic pain/medical issues, I would not have spent my life learning the art of the cloth. I would've sensibly found myself a steady job that left me unfulfilled but offered medical insurance, peace of mind, and a decent quality of life.

oh well.

Anyone need a freelance designer? I have a bangin' portfolio...

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.

on Ruysch and his mummies, death, and pleasure.

Some time ago a friend introduced me to the NLM's Dream Anatomy Catalogue, from which I've found many amazing anatomical engravings and illustrations for inspiration. This is where I stumbled across Frederik Ruysch (1638-1731), a Dutch anatomist and a pioneer in techniques of preserving organs and tissue (a precursor to the BodyWorlds franchise?). Ruysch made artistic arrangements of his material and had his own museum of curiosities. Among the displays were a number of dioramas assembled from body parts and starring melodramatic fetal skeletons, flora and fauna. He was one of the first anatomists to venture completely from scientific documentation to ars moriendi, making surreal collages from the dead and discarded.

In Giacomo Leopardi’s "Dialogue Between Frederik Ruysch and his Mummies", written in 1824, Leopardi imagines Ruysch being awakened in the middle of the night by his specimens, who for a brief interval, are granted the power of consciousness:

RUYSCH. …but since time is short and leaves no choice, let me know in brief what kind of sensations of body and mind you experienced at the point of death.
MUMMY. I didn’t notice the actual point of death.
THE OTHER MUMMIES. We didn’t either.
RUYSCH. How come you didn’t notice it?
MUMMY. Just as you never notice the moment you begin to sleep, no matter how much attention you pay.
RUYSCH. But to fall asleep is natural.
MUMMY. And you don’t think dying is natural? Show me a man, or an animal, or a plant that doesn’t die.
RUYSCH. I’m no longer surprised that you go on singing and talking if you didn’t notice when you died. ‘Unwitting of the blow, he went ahead/Combating still, and yet already dead,’ writes an Italian poet. I thought that on this question of death, those like you would know something more than the living. But going back to our subject, at the point of death didn’t you feel any pain?
MUMMY. What kind of pain can it be if one who feels it doesn’t notice it?
RUYSCH. At any rate, all are convinced that the sensation of death is extremely painful.
MUMMY. As if death were a sensation, and not the opposite…
RUYSCH. Then what is death if it’s not pain?
MUMMY. Pleasure rather than anything else. You should know that dying, like falling asleep, does not take place in an instant, but by degrees. True, these degrees are more or less greater or smaller according to the variety of the causes and to the kinds of death. In the last moment, death brings neither pain nor pleasure, no more than does sleep. In the preceding moments it cannot produce pain because pain is something alive, and, at that time, that is, after the beginning of death, man’s senses are moribund, which is like saying weakened in the extreme. It may well be a cause of pleasure, for pleasure is not always something alive; in fact, most human pleasures consist in some sort of langour, so that man’s senses are capable of pleasure even when they are near extinction since very often langour itself is pleasure, especially when it frees you from suffering; for, as you well know, the cessation of pain or discomfort is in itself pleasure. So, the langour of death ought to be the more welcome as it frees man from greater suffering…

Something to think about and explore...

southern comfort

bonaventure cemetary, savannah GA

Here are just a few pictures of the spanish moss from my trip to Savannah & Charleston. A friend is looking to buy a house down south, so I went with her, hoping to deter the chance of getting harassed while waiting at 4am in the Charleston bus station. The 20 hour bus ride was miserable for my body. Looking at decrepit historical houses and experiencing the strange but hospitable southern milieu was beyond fascinating. We went to several cemeteries on our trip, and they were all gorgeous. 

"after life's fitful fever, he sleeps well."

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.

chronically chillin'

It's so exciting to see the amount of support that our comic project is getting! A BIG THANKS to everyone that has become a backer so far. Every time I see a new donation in my inbox I jump for joy. Someone even donated in palindrome! mmm symmetry. 

Today I want to talk about chronic pain (again, forever, we are always together).  I don't think people talk about it enough, considering how drastically pain can effect daily life. Are young adults too embarrassed? I am. I've always been the independent perfectionist personality type, so admitting to people that I can't handle the physicality needed to do something is always heartbreaking. Often I don't admit my pain and trudge on-- a decision I sorely regret the next day.

Currently I have a friend staying with me that wants to go on all of the amazing tourist excursions one takes while visiting NY-- and I fear I just don't have the energy.

Chronic pain steals your energy and holds it hostage. You've got to ration. If my friend wants to go to the MET & Natural History Museum, (which I'd love to see, btw) I have to plan my energy/pain needs for the day. I have to rest the whole day before, and whole day after.  I can't just decide that morning that I'm going to go. It's hard to explain to "normal" people, because I used to be "normal" and I miss the freedom it implies, even though most people take it for granted.

Imagine feeling exhausted 24/7 from the drugs you take to manage your pain, which is also present 24/7. Now imagine doing everything you do in normal life-- walking to get groceries, working overtime, entertaining friends, cleaning the bathroom, cleaning yourself. Chronic pain turns all of these menial tasks into colossal events that must be planned for. And I really, really dislike planning!

Awhile back I found a superb explanation of this dilemma from a woman living with lupus. You can easily substitute lupus for cancer or chronic pain in her example. If you are struggling to understand the needs of anyone living with chronic illness, especially young adults, I highly recommend reading this "spoon" analogy, cheesy as it might be. Here is an excerpt:

"It's hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing [sic] a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”."

My point is that I don't have enough spoons to go to the MET today, even though I would like to. It's impossible to understand living with chronic pain if you haven't before-- but it's important to try to understand those who do, and take it into consideration when you're with them. Not in a verbose sickly-sympathetic way, but just... keep them in mind. Us chronic pain sufferers are REALLY good at hiding it.

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!

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.

Vintage Cancer #1

thorazine for your cancer woes!

this sanatorium used lye to burn tumors off! 

we've been slashing & burning since the Victorian era. 

...

death is not the end of this song

it's been stuck in my head lately.

"How astonishingly (here I must premise that illness, as far as I can judge in so short a time, has relieved my mind of a load of deceptive thoughts and images, and makes me perceive things in a truer light),--how astonishingly does the chance of leaving the world impress a sense of its natural beauties upon us! I think of green fields; I muse with the greatest affection on every flower I have known from my infancy--their shapes and colours are as new to me as if I had just created them with a superhuman fancy. It is because they are connected with the most thoughtless and the happiest moments of our lives. I have seen foreign flowers in hothouses, of the most beautiful nature, but I do not care a straw for them. The simple flowers of our Spring are what I want to see again."

Keats 1821

reflections and predictions

Since I was too busy with work to properly reflect on New Year's resolutions, I'll do so now.

But first, a little catch-up:

Monday was our a/w 2012 fashion show at Betsey Johnson, and sadly, my last day with the company.

backstage

this plaid was my doing (via style.com)

1/2 of the assistant design team

Working at BJ (however brief a stint it was) has proved to be one of the highlights of my life-- purely for the amazing people I've met, and the chance to know Betsey herself,  a personal idol of mine since I first resolved to navigate a sewing machine. How many people can say they've fulfilled a dream job they had at age 13? 

Unfortunately mine was a temp position, and my body ultimately couldn't sustain the 12 hour workdays for more than 5 months. The day after show I flew out to CA for scans to determine the source of my increased pain. I'll see my oncologist one last time this Tuesday for the results.

This break in Work brings up many questions about my future, which is something I am always reluctant to think about since Cancer. How can I find a job with a lower physical impact? How can I find a position that actually offers health coverage ( i.e., how to escape freelancer's purgatory)?  On a broader scale, what do I want to do with my life, now that I know my body can't quite hold up to 7th ave fashion industry? Now that I have crossed a life-goal off the proverbial list?

My thoughts scan back and forth between what has made me most happy in life, and what I could do to make others most happy.

Sometimes I settle on my past, on faults and bad coping mechanisms, or physical pain, but only briefly, as I remember all of the good I am capable of doing if I so choose. Without intending to sound melodramatic-- every single day is a struggle. But the days seem to keep coming.


So, what now?

what happens after cancer?

Symptoms of PTSD

Symptoms of PTSD fall into three main categories:

1. "Reliving" the event, which disturbs day-to-day activity

• Flashback episodes, where the event seems to be happening again and again
• xRepeated upsetting memories of the event
• xRepeated nightmares of the event
• xStrong, uncomfortable reactions to situations that remind you of the event

2. Avoidance

• xEmotional "numbing," or feeling as though you don't care about anything
• xFeeling detached
• xBeing unable to remember important aspects of the trauma
• xHaving a lack of interest in normal activities
• xShowing less of your moods
• xAvoiding places, people, or thoughts that remind you of the event
• xFeeling like you have no future

3. Arousal (heh)

• xDifficulty concentrating
• Startling easily
• Having an exaggerated response to things that startle you
• xFeeling more aware, hypervigilance (to health issues)
• xFeeling irritable or having outbursts of anger
• xHaving trouble falling or staying asleep

You might feel guilt about the event (including "survivor guilt"). You might also have some of the following symptoms, which are typical of anxiety, stress, and tension:

• xAgitation or excitability (these next 5 only happen in hospitals)
• xDizziness
• xFainting
• xFeeling your heart beat in your chest
• xHeadache

I've found that most PTSD information available online doesn't mention cancer at all. Perhaps because 30 years ago the survivorship for agressive cancer was much lower, or age skewed more towards the elderly, or there aren't enough cases to merit any research. Or no one cares. I'm sure it depends on the subjective experience-- how threatening the cancer was, how drastic the treatment, a person's predisposition for anxiety, genetics, etcetera. The only solution to PTSD: a shit ton of therapy.

I mention this because most of my week has been spent in NY City hospitals, and my god. my. god. It's a whole different type of crowded. It's like the airport in a snowstorm. It's every anxiety I could imagine. I sat on the dirty floor in a packed room for 3 hours waiting for my prescription. It's a lot like I imagine Ellis Island felt like; tons of helpless people stuck in a tiny dirty room, no one speaks english, and everything smells really... funky. Bad funky, not good funky. Going from insured in CA to uninsured in NY is like Dorothy going from Kansas straight to the second circle of hell (my favorite circle btw).

I didn't think this part through very well. because I avoid hospitals. because I have a little ptsd problem. see what I did there?

look i drew you a map

I've just looked through the last few years of entries. It's something I do very rarely.

life has been hard these past 3 years.

Thankfully in my life there will always be family, friends, iceman and ukeleles.

updates from the babe in toyland

It has been confirmed that I will have a job until our A/W12 Show this February.

I'm not sure I could've lasted longer anyway, as much as that breaks my heart to admit.

After this I hope to devote more time to our comic and YA cancer advocacy, and perhaps freelance writing to pay the bills. Any suggestions? What should I pursue?

I've been having severe hip pain lately, much more than usual; I think it's the joint. I know several people who suffer from avascular necrosis after radiation, and am concerned it is this. I was able to sign up for HHC discounted medical service here in NY, so I will be seeing an orthopedic oncologist next Monday, after spending all yesterday in the Bellevue ER. For now I'm taking an increased dose of pain meds, although it's difficult to work when they make me so groggy. I often find myself trying to communicate, searching for a word that just won't come out. It's embarrassing. I hate opiates.

I'll miss the BJ team; they've become like a family to me; an overworked and overstressed but pizazzy family.

Here's a picture from our Xmas party last month.

betsey quit toying with me!