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...