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!