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.

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.

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

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.