Saturday, April 26, 2014

New Year, Same Fear.

Ewings is a nightmare that refuses to end. Some of us, for some unknown reason, are granted the reprieve of remission-- we wake up in a fog, only remembering bits and pieces of the terrible dream, but the feeling, the overwhelming exhaustion of the struggle, the terror of confronting something so threatening and horrifying, remains with us. We are so relieved to see the day break, we go about our waking hours with a new appreciation for light. We try to forget the night, but deep down we know that eventually, sooner or later, our bodies will grow tired and this terrible dream will find us again.

How's that for an update?

I finished my year of chemo, surgery, and radiation in late October. I am in remission for the third time, but the indelible stain of the past five years remains fixed.  I don't understand why I'm still here while my loved ones are gone. It's not for lack of spirit, or fight, or hope. There is no reason and we must accept that. I feel like a veteran of war, except the war is inside my body, never-ending, and there is no escape. How to live, then? I've learned the art of detachment and it has served me well-- I am able to laugh, feel happiness, make half-hearted plans for the future, fall in love, travel, visit friends, make art, make mistakes, and not think of cancer. I pretend to move on and I pretend to be "all better", partially because it's what everyone wants, including myself,  and because it's the only way I can survive. Fake it 'til you make it. Or break it, whichever comes first.

So this is what I've been doing since my last update-- enjoying life as best as I can, pursuing new opportunities, blocking out the past. I'm still trying to make sense of this monstrous struggle that has consumed most of my twenties. Despite everything, the pain and the loss, I am happy with life.



Something noteworthy: After two years of fighting, appeals, and endless paperwork, I finally received my disability approval last month. TWO YEARS-- during which I relapsed, went through 12 months of treatment, was truly disabled, and desperately needed monetary support. Better late than never? Since finishing treatment I have taken a string of freelance jobs to support myself, now finding a niche working on production for visual artists in the NYC area. The pay is negligible, but I am able to set my own hours and invest my time working with artists I respect on projects that inspire. It makes me truly happy collaborating with amazing minds.

Which brings me to this show.

More detailed post to follow, but if you're in the NYC area Thursday May 1st please join me for the opening of Chemosynthesis, a visual and performance art show benefiting Ewing's Sarcoma research. Together with poet and fellow survivor Max Ritvo, we attempt to confront the complexities of a terminal cancer diagnosis in our twenties. Opening 6-10pm with a reading and performance at 8:30.



My next scans are scheduled the morning before I hang the show. It will be... a long day.

20 comments:

Anonymous said...

Do you ever reply to people? Id like to get a little more info on your condition/treatment options up to this point.

cancer said...

Figting....

Anonymous said...

It's great to hear from you. (:

Stacey Beck said...

Once you know someone who has cancer it changes all your views on it. It has always been bad but it's different when someone you know gets diagnosed. My best friend is just starting cancer treatments today but it's always helpful to hear stories of success.

http://www.cbsnv.com/services.html

dani-pack said...

I'm so sorry that all of this has happened to you, and I'm so grateful to you for sharing your story. I work in a pathology laboratory and am constantly surrounded by tissue biopsies from patients whose lives are in flux. It is very easy to become detached and desensitized, but I always try my best to focus my work and love on our patients. Your energy and will are monumental, and I hope you realize how much your words touch everyone who reads them. I just wanted to thank you, and wish you beautiful and full moments from here to the end. Life is terribly short and bizarre to start with, let alone when you are dealt biology that is a gross misrepresentation of your soul's strength.

Lauren in GA said...

Kaylin, I just want you to know that I think you are incredible.

I also follow you on Instagram and am praying for you.

I don't know who dani-pack is (who commented right before me) but I wholeheartedly agree that, "Your energy and will are monumental."

I started to cry when I read your poignant words here of, "Despite everything, the pain and the loss, I am happy with life." I am truly touched by, and admire your attitude. In a world full of whiners (me included) you express your gratitude about life...I really learn a tremendous amount from you.

Green Monkey said...

I am just finding you... so I'm late to the party but not to the dance. AND, I'm in the NYC area. would have loved to have seen your work. After two melanoma's, breast cancer in both breasts, and advanced rectal cancer, (and waiting on a thyroid biopsy) I struggle with the fear of what I can not see (thank you Natalie Merchant). Will research Ewing's... my origins are currently unknown but i have narrowed it down to two possible, semi rational explanations. 1. I was abducted by aliens or 2. I had sex with two men on good friday and one was a jew.

glad I found you. any chance you have burning man plans?

Sherman Morrison said...

Kaylin, your writing is fantastic and you have an unquenchable spirit in spite of all that you have to deal with. I'm always on the lookout for fresh thinking and new perspectives on cancer because it just doesn't seem right that after so many decades of research we still don't understand how to effectively treat the disease. Your blog is an inspiration. Keep it up. -- Sherman Morrison

Anonymous said...

Hi. My name is Kristi. I recently found your blog and I love how you express yourself. Funny stuff and the dark parts.
I was diagnosed with breast cancer on my 31st birthday. It has been 12 years from my diagnoses and I haven't had a recurrence so far.
I have a group of girls also that have been everything. I found the young survival coalition online (bc under 40). I still have a close relationships with the core group we had online when we were all going through chemo at the same time.
Five of my close friends from that group recurred and have passed away.
I feel 'why am I still here'? It bugs me out.
So even though I am far out from my diagnoses and I don't have to deal with what are dealing with right now,I just felt the need to write something to you.
It is great to read something where you can say to yourself. I get that. I felt that way. I still feel that way now.
Funny thing is I found your blog when searching about Kris Carr. One of my bc girls gave me her book signed. I looked her up and was trying to figure out what kind of cancer she had. I felt it was a little false.
Your blog came up but I never read anything on your blog about her so far. lol
Kristi Collins
admin@therook.org

Alyson Hadley said...

Where can we buy terminally illin?

Anonymous said...

Kaylin:

I am glad to hear your story. I had ewings sarcoma, back in 1984 (age 16), the tumer was on the chest wall attached to a muscle and rib. Surgery, chemo, radiation...yuck. I am 47 now been in remission, like 30 years now.

Please don't give up...cause there must be a purpose in life, and yours maybe to advocate for Cancer, and just sharing your story gives hope to all who read it. I will say some prayers for you..please keep the faith.

Also, Vitamin C...need to take it...1000mg a day (or every other day) and lots of fruits and veggies.

Good luck and god bless.

mike
mike3892002@yahoo.com

Anonymous said...

Hi Kaylin,
I have a request. I love following your blog and have even been inspired to take many years of random journaling that I call my Organized Chaos and try and start a blog of my own as soon as I figure out how...LOL...my request, or I guess two, are...1) do you have any pointers to a successful blog? And 2) you recently accepted my instagram invite and I accidentally unaccepted you. Could you please reaccept me? I felt so stupid LOL.
I hope you are doing well. If anyone deserves a little peace and normality to their life, it's you...I'm not usually one to wish for a little boredom or normalization but I do know what it's like to live a life where that can be craved...if that makes sense.
Thanks for everything you share with us and your brevity...you are admired and appreciated.

Genna Egan
aka
angelkizzez74
angelkizzez74@hotmail.com

Los Angeles Hospice said...

Thanks for sharing the story with us

Anonymous said...

You are an amazing woman. What you have to deal with daily in your life seems unbearable to me. Best wishes for your future and quality of life!

Anonymous said...
This comment has been removed by a blog administrator.
newton juma said...

Be encouraged, the information is helpful.Newton@Kenyatta University School of medicine

Scorpius said...

This is my first comment to you, all I can hope, with this post being a year ago, that the sentiment still stands. There is a beauty, a still-life of life and death that you have created here, and there are still people that wonder about you. You have every right to your life, but my only question is, are you still here? Not here in life, how can I ask that? But are you still here to blog and share your beauty some more? I truly hope so.

If blogging days in this domain are over, then thank you so much for sharing it. Just...thank you.

Take care Kaylin. Kick ass.

Anonymous said...

Amen, Scorpius. Wonderful comment and exactly my feelings. Best wishes, Kaylin. Totally understand if you have moved on from this blog, but I also thank you for the beauty and truth of your postings. Kick ass, indeed.

kaylin andres said...

I want to say thank you everyone for your comments. I have no idea how to answer comments individually, so if you have a specific question please feel free to email me at kaylinmarie at gmail dot com.

love and health to you all <3

Sharon Welch said...

Kathleen has just expressed my heart! Love and prayers coming your way
Love you
Aunt Sharon