Wednesday, August 7, 2013

ALEA IACTA EST

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!





41 comments:

John Beaver said...

I express my feeling thru music! Like you all going thou everything cancer brings is quite the heart-felt load and I always used music as an outlet. I play at local venues and clubs thruout the bay in hopes of traveling the world with my music one day

Here is a video we did of myself right before I went in to have my cancer removed

http://vimeo.com/50569439

Kenny Kane said...

Hope your summer is going well. Thanks for the update!

Natalie Newman said...

I'm not artsy, but I do have cancer. I have MEN 1 which is a genetic mutation. It seems as though I have had a series of unfortunate events since I was a junior in high school. I lost my best friend that year. About 2 years later I lost another very close friend. Both due to car accidents. Then about 3 months after that I found out I have MEN 1. This was about a year and a half ago and since I have gone through 3 surgeries. One was to remove islet cell tumors from my pancreas and removing 2/3 total of the organ. Things went well for a while until this March. I was diagnosed as Diabetic and am now taking insulin. I totally relate with you, I have a box of my daily medicines that I take too! Through all this though I have accomplished so much! I graduated college (in 3 years) from Iowa State University! But more importantly I remained hopeful! I am about to start a new journey and move from Iowa (where I have lived my entire life) to Colorado at the age of 21! I am very much inspired by you and you're hopefulness and your way of looking forward.

Best of luck!

Natalie

sedatedbeauty said...
This comment has been removed by the author.
Ashley Myers-Turner said...

I love Melissa's work. Beautiful.

I have astrocytoma and use photography/digital art as my art therapy, often incorporating my MRIs. This spring I had a show with other cancer survivors here in LA. You can see some of my work here: http://www.ashleymyersturner.com/mri-project#/i/1

Anonymous said...

You should get in contact with Diem Brown.

Seamus said...

Great update...beautiful art and beautiful words. See yall soon I hope

Rhi Jenkins said...

Hey, Im Rhi,am 26 and a photographer from the UK.

I agree with SO much that it is important to be surrounded by people who know what you're going through - since being diagnosed just under 2 years ago with ovarian cancer I haven't so much as spoken to another cancer patient/survivor for more than five minutes. I've only ever seen a handful of people near my age at the hospital where I was treated and, despite being an inpatient for much of my treatment, I have never had the chance to speak to any of them - It's amazing that you have had the opportunity to meet such inspiring people! Your exhibition sounds like it is going to be incredible and Melissa's paintings are beautiful!

I'm currently working on a series of prints using paint thinner and lots of other lovely chemicals to transfer and layer digital prints of my photographs. I'm inspired by all of your energy so much, I've been out of treatment for a year and I still find it hard to put my experiences to any kind of use!

I'll post a link when they're done! :) Wishing you all the best Kaylin x

Unknown said...

Kaylin,

I am a young adult cancer survivor! I had your sister cancer, osteosarcoma. I am 23, and was diagnosed when i was 20. I was in the midst of transferring to a brand new college, and pursuing my degree in physical therapy.

I learned about you through the MTV show. I cannot tell you how much of the emotions we share. It really takes on to know one, right? I absolutely love your sense of humor, as that was always how I lived. My nickname was "Bossy, Bald, Bitch" or as my dad called me, B cubed.

You're amazing, and I'd love to meet you one day. It's crazy how little there is out there for young adults. I think Terminally Illin would be a HUGE hit at the hospital I was treated at called City of Hope in Duarte, California.

Thank you for opening yourself up to the world, and hopefully making the word "cancer" not so freaky to some people.

Love always,
Hannah Komai

DollsInDystopia said...

Kaylin - it's Nikki. We haven't talked in awhile! I'm glad to see you blogging again. I wanted to share something very personal to me. I actually commissioned an artist friend to make an urn for me - she is working on it now. It will be very "me" - a blend of the things I love and hold dear in life. Here's a link to a post she wrote about working on it: http://www.leemalerich.com/2013/06/30/a-commission/

Stay well, my friend. - Nikki

Obsessedwithlife said...

I really enjoyed this post! I'm also a fellow 3-time Ewing's survivor and just graduated with my Masters in Art Therapy (b/c it was so helpful to me during many long years of treatments)...inspiring!!

Unknown said...

i am fascinated for you courage and your talent
.good vibrations is all i wish and nothing is impossible..you got that cure ! I also live in NYC and would love to get to see your art. I am from Brazil and couldnt miss any episode os world.of Jenks. I dont know why i thought about you and looked for your blog on google wondering how.you are feeling. I wish a life full of joy and a.lonnnng life.

Moniqur

Anonymous said...

I've been reading your blog for years but I've never commented before. I'm a 19 year old Australian osteosarcoma survivor and I've found your blog so helpful over the years as a reference point to relate to. I especially love this post and all of the links to cancer survivors and their artwork... it's really cool, and your friend's watercolors are beautiful.
I do portraits of my cancer-friends and some artwork with medication - http://milked-from-a-thistle.tumblr.com
Sophie x
PS. Is there a link or DVD to watch the MTV show?

kaylin andres said...

that is awesome!! I considered going into art therapy as well right before I relapsed. Always good to hear a fellow 3x'er is happy & healthy! gives me hope!

Becki McGuinness said...

Would you like to add your cancer blog to cancer brochure/book I'm making to help others? My email rcm11uk@icloud.com
X

Anonymous said...

So very glad to hear from you again. What an inspiration to any young cancer warriors. You have still been able to live and create so fully in the midst of everything. My daughter is now 20 and going into her third year of battling the "easy" cancer, thyroid, and is not yet clear after 4 surgeries. She hasn't let it slow her down, continuing in college, theater, and singing, risking her voice with every surgery. Reading your blogs has been so uplifting.

Monica L. said...

I didn't have cancer, but I did have a brain tumor and both adrenal glands removed. I was recovering from my surgeries and the illness the tumors caused around the same time you started your blog. I've been reading since the beginning and reading your journey really helped me to understand what I was feeling facing my own potentially fatal disease. So thank you. I'm a professional musician, and someday I'll be brave enough to post some links.

Malika said...

Kaylin I don't have cancer but I had chemo for lupus 7 months of it and it sucked. I also threw up everyday all day for 12 months straight. I have end stage renal disease and get hooked up to a stupid dialysis machine three times a week just to live. So I can identify it all sucks. I just thank God I am here to talk about it and even tho it sucks I have faith. I just want to encourage you! You are smart and beautiful and you will beat this stupid cancer. I am so inspired by your strength. Keep going.....

Alan (sloan kettering) said...

Hi Kaylin,

When I saw the mtv show, i recognized you from Sloan Kettering. My 2-year old daughter Janie was being treated there for Rhabdomyo Sarcoma. You may recognize us if/when you see us.

My wife and I appreciated your openness and attitude in sharing with the world. Cancer has turned our world upside down and seeing you share felt like you were telling our story for us too, so thank you for that.

Janie passed away last Thursday. I was thinking about commissioning someone to design a tattoo for me about Janie. I know you're an artist and thought it would be special to have a fellow cancer fighter involved. If not you, maybe you know someone? Even if not, feel free to get in contact. My email is below.

Here is a link to the blog we've kept if you're interested in who we are:
http://www.caringbridge.org/visit/gong

We will be praying for you.

Alan
agong029@gmail.com

Ingrid said...

This is awesome!

Anonymous said...

You are a strong and incredible human being. You are such an amazing person and designer. You are an inspiration and role model to me. Always be strong and never give up on yourself.

By the way, have you heard of graviola fruit?

http://www.ehow.com/facts_5005879_what-is-graviola.html

Also read up on some "home remedies" for Ewing's sarcoma.

http://www.godlikeproductions.com/forum1/message1798174/pg2

Onwards!!

Anonymous said...

I have been checking your blog every now and again. So good to hear from you!

Anon said...

This is a fabulous blog. Thank you. I LOVE the paintings. Very unique and impactful. I cannot believe how terrible it is to have a close relative diagnosed with breast cancer, a young relative at the peak of her life. I don't know what to do. I've done a ton of research, which is how I ended up here, looking for solutions. I think I am getting confused. I have found SOME very interesting and sort of off-market sites, some more interesting than others, but really only one or two that I'm going to look into. I'm keeping a notebook. I'm writing down everything! Have you ever heard of the website called mybxprotocol.com/bx ? This looks like it could be a real solution beyond the chemo or when the chemo doesn't work. There is another site, rather disturbing about a doctor who can turnaround cancer but when I tried to get into the Burzinski website my filters started screaming that there was a trojan attached to that site, so that was a dead end. I'm going back to the mybxprotocol.com/bx site and listen to the testimonials. Could you tell me what you know about any, off-market treatment that might be worth trying? Since chemo is a dirivitive of AGENT ORANGE, it worries me to have her use it unless it's a last option. Any suggestions would be most appreciated. I know there ARE other options, but I am limited in my knowledge and time for serious research. Thanks much!

Loretta said...

Love the photos. They are beautiful.

Wendy Wilson said...

I was fighting against a stage IV cancer and i won, lucky my husband who helped me all the time.I think it is very important that family support to win, because i was very weak;really helped me participate in one group of victims of cancer, so my mood improved, also helped me a adviser of advisercancer-diseases.com.I recomended not surrender, because sometimes the first treatment does not work as me, and change doctors if it is necessary.Read positive thinking books gave me more energy.During my cancer,i changed my diet,now i eat vegetarian organic food(now i not eat meat).I think is a set of things that help me.
Xoxo
Wendy

amelia said...

Hi Kaylin,

Sending best wishes to you. I began reading your blog in Feb. 2013 shortly after being diagnosed with stage 3 inflammatory breast cancer and Li Fraumeni Syndrome. I was 28 years old at the time of diagnosis and was living in Brooklyn when I had to come back home to the midwest for my treatment. I've enjoyed reading your blog and admire your efforts to help raise awareness to young adult cancer!! It surely needs and deserves much more attention. Thank you for doing this. I am a photographer and have been making work about my cancer along the way. I post some of it here: http://ameliacoffaro.com/my-walk-with-cancer

You are in my thoughts! xo

The Hairless Hairstylist said...

okay I am kind of obsessed with you. I am 29 and was diagnosed with stage 3 breast cancer in May. YOU inspired me to start a blog. I have videos of my entire family shaving their heads and break downs in my closet. I would love if you checked it out!! TheHairlessHairstylist.blogspot.com

Dr William Mount said...

Ech, horrible scar. My dad and my wife's mom died from cancer....the Morphine Drip. Then the Army gave me the cure....we knew about it since Hiroshima. I got mad. I published it. Damn the AMA and full speed ahead. APFN THE FURE FOR CANCER UPDATE 4. Ambassador Mount. 253-686-6290. Get mad, get better, and tell everyone.

MarioStelzner said...

To all you cancer survivors, you are perhaps just lucky, because there are a whole lot more cancer victims who didnot or will not survive their disease. But morn not because they just may be the lucky ones. FREE AT LAST. FREE AT LAST. HAH, HAH, HAH, HAH, HAH. Enjoy the rest of the journey.

MarioStelzner said...

If I my make a suggestion, instead of running to every "FUN" run for a cure for this cancer and that cancer, why don't you cancer victims start complaining to your governments to pressure them to release life saving treatments that may be far more effective than what is now available!?

You may also want to complain to other organizations like the Canadian and the American Cancer society whom you seem to blindly entrust with the money you send them to find a cure for cancer.

Cancer is a multi billion dollar industry and you are all being victimized by.its cancer predators.

obat kanker payudara said...

Good morning all :)

MarioStelzner said...

I have been around for a lot of decades where I have heard that a cure for cancer is just around the corner. I have also heard that one form of cancer treatment or another form of cancer treatment will be available in the next ten years. Unfortunately, these break through treatments never seem to be heard of ever again. It seems as though these researchers who make these claims disappear as fast as their cancer cures. Could it be that these researchers are trying to milk the public and government for research dollars!?

For the most part cancer treatment has remained the same for over fourth years (the same old drugs and radiation therapy are being use).

Now here is the multi-billion dollar question, "Why is it that cancer researchers, assuming that every country in the world that can do and is doing cancer research in government, private, hospital, and university reaseach laboratories, cannot come up with one form of cure or effective treatment for cancer?" Is it corruption? Is it that these researchers are so smart that they are really stupid (in other words, they can pass a lot of academic tests but they have no ideas of their own)? Are they to busy playing with their laboratory toys that they cannot do their jobs? What is their problem?

Maybe thes organizations where these researchers labor should be investigated by the authorities if these organization accept public funding to see if the money that they receive is really going to find cures for cancer!

If you want a cure for cancer, organize and start complaining to the people in charge. Dying of cancer is not a pretty sight.

MarioStelzner said...
This comment has been removed by the author.
MarioStelzner said...

while many people, like myself, know that we are nothing more than worthless eaters, could there be anything more useless than a worthless eater.

Why yes there can be; they are the cancer researchers who think that they can feed on a bottomless trough of cash and contribute nothing to finding a cure for cancer.

To all you cancer researchers and administrators, I say, enjoy feeding at that bottomless trough of cash you have found at the end of the rainbow. Just remember eventually people are going to wake up to your game and you are going to land in prison, because nobody is going to keep putting up with 50 more years of your bullshit.

MarioStelzner said...

Just to let you know, most of those off-the-beaten-path remedies for cancer are ways to "prevent" cancer, if you want to believe that, while those others are probably nothing more than "snake oil" sold by modern day tonic salesmen pirates and gypsies. Unfortunately, when it comes to cancer we are all between a rock and a hard place. However, don't take my word for it because I'm no expert. I suffer along with you. Good luck with with your internet search.

Casey Mackay said...

Sophie, if you still check this page you can watch the mtv series on sbs on demand. It aired in Australia late last year so don't know how long it will be available online for. That's assuming you missed it when it was on! ;) Casey - 2001 dx metastatic ewings, 2012 dx melanoma, 2013 dx pilomatricoma, 2014 hopefully nothing?

Casey Mackay said...

*cries* after seeing world of jenks online last week I found this blog. After 3 cancer dx 's in my late teens and 20's (the first being terminal metastatic ewings at 17), I feel like we are the same. Every thought, every feeling, every fear I have experienced is here. I have had a few cancer friends over the years but have always felt alone as no one's story has ever been so similar to my own. Alone until now. I am so grateful to have found this blog. Oxox
P.s. yes I did mean terminal ewings. Too long a story for this forum I think but yes I'm still here (some days more than others). Even with 18 months of high dose chemo and radiation the doctors said I wouldn't make it. Guess I proved them wrong for now at least

MarioStelzner said...

Wouldn't you know it, I just recently discovered a new way you can die of cancer. When your oncologist runs out of his small bag of tricks, he/she tells you to go home and die.

To you cancer/medical researchers, try rubbing two sticks together and catch up to the rest of the modern world.

Jennifer Clark said...

Thanks for sharing your views about cancer. My friend is a young cancer survivor. She was diagnosed with ovarian cancer a year ago. She is fighting with the cancer strongly since one year. She lost all her hair and many other side effects attacked on her in many ways but she did not lost the hope to win the cancer. I want every patient must be strong enough to fight with the cancer.

Wampascat said...

Much love to you and Iceman.

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