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.
Tuesday, 12 March 2013
Saturday, 2 March 2013
After the surgery last month I had to learn to walk again without part of my lung & diaphragm. The very first day they had me sitting up. The second day I took my IV pole, two vacuum-suctioned chest tubes, a portable motor that sounded like a shop vac and 3 nurses in tow for a walk (if you could call it that) down the ICU hallway. We even tried climbing stairs, but the tubes from my IV only allowed me to take 3 steps up, which I think would be manageable for even the most feeble degenerates among us. I stopped practicing the stairs after that. But I kept walking, and 3 or 4 days later I was doin' laps like lance armst--- I mean, like a pro. It's amazing how fast the body can recover.
After I was discharged from the hospital I went right into chemo cycle #5. I think the extra pain meds have made me extra nauseous this time. There are lots of other "extras" that pain meds give you, like extra hard poop. extra heavy eyelids. extra street cred. extra helpful friends.
For the last few days, Jon & I have been editing the final version of the comic. It's come so very far from the hair-brained scheme we hatched years ago. I had time to kill in the waiting room before one of my (many) doctor appointments, so I pulled out a test-print and started to read. In no time I was sucked into a colorful world that echoed, in a surreal way, the hospital around me and issues I was immediately facing. Jon's drawings are delightfully intricate; you can take your time on each page and notice new details with every read. I was disappointed when my name was finally called, because it meant a transition from this magical cancer-comic world to real world-- and real cancer. Bottom line: great for making hospitals more bearable. I can't wait until issue #1 is finished.
I suppose I should mention: I will be featured on Season 2 World of Jenks on MTV, which premiers this Monday. The crew followed me for a year as I moved from San Francisco to NYC to pursue my career and a cancer-free fresh start. I'm horribly embarrassed about the whole thing, but I remind myself that I participated in this project to promote young adult cancer awareness and issues of survivorship. When I was first diagnosed I felt so shamefully alone-- my cancer happens to one in a million, and it's even rarer in young adults. The prognosis is grim, but there are a few survival success stories out there if you look hard enough. I wanted so badly to find someone I could relate to, someone to learn from, some lucky soul who had found the light at the end of the IV drip and was ok now. I wanted to be ok too, someday. What I needed was empirical hope. I needed proof through personal experience that my cancer was survivable, that pain is surmountable, that the future is inevitable. I needed accounts of young adults overcoming the physical & emotional upheaval of cancer so that I could be better equipped to navigate my own tumultuous journey. Trouble is, until very recently, people have rarely been encouraged to open up (I mean really open up) about Cancer due to negative social stigma, fear of vulnerability or judgment, or outmoded cultural mythologies of illness. Eff that, let's talk about it! Let's set the record straight and help the newly diagnosed. Empirical hope, knowledge, camaraderie-- this is what I wish to give others by sharing my story with MTV.
Hope creates strength, and with strength we can survive. to ride ziplines.
Monday, 4 February 2013
Sunday, 3 February 2013
I awoke to find this balloon hovering suspiciously close to my face, obviously mocking me with its grotesquely stretched mylar smile.
I punched it.
[EDIT: Don't get me wrong, I love smiley balloons! Keep them coming!]
Thursday, 31 January 2013
If you're curious to know what I look like right now in ICU after Friday's surgery, this Iranian space monkey depicts me perfectly, from the velcroed-in leg restraints and little socks, to the bald head and sad face of pain and pure terror of his fate in life. Thank you space monkey, for making my life a little easier. Now I don't even have to take a picture.
|Saddest picture ever.|
Monkey business aside (yah I went there), surgery went fantastically well and I am slowly healing. They took out what was left of my tumor, the lower right lobe of my lung, part of my diaphragm muscle, and scraped some cancer from the vena cava that leads to my heart. I've had an epidural & two chest tubes put in, and I'm of the opinion that three is enough for one lifetime. That shit HURTS.
It is very hard to walk due to weakness and shortness of breath, but I'm working with a physical therapist every day to strengthen my stamina. I'll be inpatient at SK for the next week.
I hope your fate is as good as mine, space monkey.
Monday, 21 January 2013
Thursday, 10 January 2013
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.