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Wednesday, 7 August 2013
|Portrait of me and scar by Melissa Carroll|
It's been an eternity since I've last posted. It's been 10 months of chemo and after this week, I'll only have one cycle left. It's been rough, but we have no choice but to move forward.
I haven't felt like writing about myself-- this blog has 5 years of my story documented, and with the mtv show I feel I've said my piece. For the past year I've just been going through the chemotions, the same old, same old. Now that treatment is almost finished, I am starting to look forward. I want to use this blog as a platform for other young adults with cancer. I want to showcase their talents and encourage others to create.
Since moving to New York I've had the enormous pleasure of making friends within the young adult cancer community, and without them I doubt I'd have made it through my recurrence sanity intact. I can't stress enough how important it is to have someone to vent to, someone who understands what you're going through, someone to commiserate with, someone to party with (cancer patient style: drinking 4 seltzer waters and home by 12). I noticed early on that all of my cancer friends have an unnervingly low bullshit tolerance-- we skip the smalltalk and go straight for the meaningful conversation, whether it be about death, hope, fear, or of course, cancer. We share our scars and our stories eagerly. There are things I'd never be able to express to anyone else in my life, but my cancer friends get it.
My cancer friends are also amazingly talented and strong individuals that have managed to balance the rigors of treatment with their respective creative endeavors, from poetry to journalism, painting to songwriting, photography to social activism. Like me, they've used their skills to express their cancer experience to the world. Here are just a few:
|hanging by a thread, Melissa Carroll|
I met Melissa through this blog-- she contacted me years ago and we became fast friends with much in common. We both have Ewing's Sarcoma and both relapsed around the same time. We also live together and look similar-- we're like the Doublemint gum commercial but with cancer. Melissa is a brilliant painter and lately she's been doing a heavily introspective series of watercolor self-portraits that capture the feeling of cancer like nothing I've ever seen before. She's a master of subtle expression; that look in your eye when you're too nauseous to speak? She can capture it.
|Another Friday Night, Melissa Carroll|
Melissa is having a solo 1-day show at Andrea Rosen Gallery 2 in NY August 22nd. I will be at the opening, come and say hi!
This is a portrait Melissa did of John. I met John at Sloan Kettering where we're both getting treatment. He's 21 and has AML leukemia, but more importantly, he's a talented skater and songwriter. John has a blog that continues the tradition of candid cancer confessional, and I find myself relating to so much of what he has to say. You can find it here: http://johndschmidt.tumblr.com/
|Kristin, Erika, Suleika, Myself, Melissa: cancer babes|
I met Suleika earlier this year. She is battling leukemia (soon to be in remission) and has accomplished more at 25 than most achieve in a lifetime. She writes a regular column in the New York Times about her cancer experience and addresses issues important to the young adult cancer community. She's also the spokesperson/ambassador for numerous charities, lectures at colleges nation wide, is writing a book... I am in awe of her energy; I'm tired just from writing this paragraph!
|memento mori: death rules all men|
And a small progress shot of some work I'm doing for a group show scheduled for early October featuring 5 artists/cancer survivors. I'll be designing a small capsule collection and showing embroideries with the hair I grew during 3.5 years of remission, stitched on hospital gowns.
All of us have shared our story for the same reason-- an overwhelming desire to ease the suffering that we ourselves have felt, and a desire to connect. I've felt a genuine connection with every young adult cancer survivor I've met and even though at times it feels like there is no future, only a dead end... that end is false. The future is mutable and ever-changing. There is ALWAYS hope. We are the future until our last breath, and I want to encourage others to continue creating, even with cancer.
Have you had cancer and channeled your creative energy into expressing your experience? Did cancer help you find your voice? Post links in the comment section, I'd love to see everyone's work!
Monday, 25 March 2013
Thank you to everyone who has donated to my special-needs trust. My heart swells.
It occurs to me daily that I am almost entirely surviving on the kindness of strangers.
I think of old wildlife documentary footage showing altruism in social animals like elephants, taking care of their sick & old because they still offer some kind of benefit to elephant society. I feel like a sick elephant sometimes.
Since the show started I've been getting heaps (hundreds) of emails and messages from all walks of life, sharing personal stories in matched intimate detail to what I share on the show. It's humbling, heartwarming, and surprisingly-- emotionally exhausting. I've read each one but haven't even begun to crack the surface of responding to them. When someone takes the time to tell you their life's story, one feels the need to respond with the appropriate intimacy, which takes time and consideration. So apologies if it takes awhile to get a response from me. I'm going through chemo. Sometimes my friends & family don't even hear from me for a few days!
Thanks again to everyone who has reached out thus far-- I love reading every message & they definitely make my day!
Thursday, 14 March 2013
currently on my second week, 6th cycle of Irinotecan & Temozolomide.
six more months
and countless hours of pain & nausea
but we do it for that glimpse of light-- of living again. however short it might be, we soak it up.
tonight I am on a Gen P-Orridge lyric binge as I try to distract myself from chemo effects. Headphones on, too many drugs to name coursing through veins.
in the morning
after the night
we fall in love with the light
you can download a little chemo playlist of PTV favorites here. perfect for neutropenic fevers and astral projections.