Holidaze...

Merry Christmas, Happy New Year, and all of those other greetings I have so egregiously missed for the past few months of not blogging. I hope you will forgive me.

For those interested in the numbers: I am now almost done with chemo cycle 4 of 12, the scans are showing that the lung tumor is shrinking nicely and I have surgery scheduled for Jan 25th to remove it-- something I am thoroughly dreading. Afterwards, more chemo and radiation until September.

I am having a much harder time emotionally this time around. Something to do with the unspeakable bummer of a 3rd diagnosis while still in my 20's, feeling jaded and weak and furiously angry at my lot in life. An impalpable sense that I am being cheated wafting all around me at all times. I have no healthy way of disposing this anger and frustration so it comes out surreptitiously in the form of constant grumpiness, which I'm sure makes me a pleasure to be around. It's probably not you, it's me. I've been craving a lot of time alone and I'm not sure people understand why I need it, but I do.

Grumpiness aside, I am so incredibly grateful for the support system I have & all of the wonderful people who have donated money to help smooth the rough path to remission. These donations help me afford a car service to chemo in the mornings (so I don't have to take the crowded flu ridden subway), healthy groceries, and medical deductibles. I wish I could thank every benefactor personally but I realize the biggest act of gratitude is to keep writing and sharing-- the things that brought you here in the first place.

I'm planning a bunch of new posts soon, but to tide you over, I'd highly recommend checking out this book, The Emperor of all Maladies, a surprisingly intimate and fascinating amalgamation of case studies, the history of cancer, its significance in culture throughout the ages, and how modern cancer treatment came to be.

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.