Thursday, April 7, 2016

a bad hand.


here it is.

my cancer has moved to my spinal fluid.

I woke up last week with numbness in my foot & pain in my legs, which I chalked up to overexertion from vacation. An MRI yesterday revealed the real culprit.

They immediately stopped my chemo, as it has not been effective.

Now we're looking into palliative radiation.

I know what this means. I've watched all my friends go through the same. It comes back in the lung, then brain, then spine, and then you die. It could be a matter of months. I'm hoping for longer.


In one of my most beloved films, Jean Vigo's l'atalante, the first mate is divining his future with a deck of cards. "all spades! must've been shuffled wrong". 

And this is all our life has been, Jean Vigo and mine-- a bad shuffle of cards. but still a shuffle, still a chance to make something with our hand. better than no cards at all. 

I just can't stop hoping.


57 comments:

Caroline said...

Well DAMN! But never give up hope.

Deborah said...

I am so very sorry. Lifting you in prayer. Sending all my love on the wings of a desert sparrow.

Lovelovelove,
Deborah

Yasmine said...

you have definitely made the most of your cards Kaylin. Life can be so unfair. wishing you all the best

Unknown said...

Oh, how my heart truly hurts for you:( I was told about you Kaylin, so have read your story from the beginning. You have gone through so much! And have been so, so strong through it all! It makes me ashamed for my complaints about pain:( I am also sure you have inspired COUNTless others with your absolute bravery and pure, innocent honesty regarding your trials. You did for me, that's for sure. You are in my thoughts and prayers, and always will be. God Bless you. You are unbelievably special.

Adollybird said...

🙏🏻❤️🙏🏻❤️🙏🏻❤️What a remarkable strong woman you are!Thinking of you in my prayers.Never give up hope!🙏🏻❤️🙏🏻❤️🙏🏻❤️

Tink said...

Kaylin - i don't know about you, but in me there's an internal drive to just keep going. I've got a progressively fatal neuromuscular disease called mitochondrial myopathy (I have 3 different forms of it) & while there's no cute & really no treatment, I still wake up each day with the will to keep going. Doesn't mean I climb Mount Everest lol, in fact I barely got out of bed today, but there's something in me that won't give up, that keeps on hoping & keeps on going. I wish you as much quality time as possible & hope that the palliative radiation helps with the leg pain & numbness. I live w/ extreme leg pain daily from the mito & it definitely provides a series of challenges... Thanks for the updates, hoping to keep hearing from you as long as you feel up to writing them. 💚 Sending love & prayers 💕🙏 to one of the toughest 💪 Bad-ass chicks I know! ✌️👍👍

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All the love to you Kaylin. You are a strong beautiful spirit.

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Sending you strength to be with each moment to your utmost and thoughts of fire and peace at the same time. Wish I could change things for you.-a devoted reader Also I think you would like this image. Know that you are being held by many.
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audare said...

the phrase under the picture was written in greek but translates as: “Many people are afraid to empty their minds lest they may plunge into the void. They do not know that their own mind IS the void.” — Huang Po Somehow I feel you'll get that that's meant to be comforting and not terrifying.

Unknown said...

I don't really know what words to offer. I don't know you, but have been checking in on you since your World of Jenks appearance. I wish you peace and as much quality time as possible in this lovely world we share. It will surely be a darker place without your light.

Anonymous said...

We will hope for the best. Buy some time... I hope the radiation is successful in doing that for you. You are a brave-heart to run the gauntlet once again. And who knows what treatment breakthroughs may be just around the corner...
Keep breathing! You are in our hearts forever, no matter what!
Yours truly, Ada P. Nutt

Unknown said...

I have been following your blog since World of Jenks. You made your mark on the world then with your quirky intellect and deep artistic impression. Thank you for allowing us to follow your journey through your witty and reflective musings on your blog. I had a friend who went through palliative radiation and it really improved her quality of life and gave her several months that she took complete advantage of. Wishing many more panda moments. You mentioned the poorly shuffled cards and it reminded me of a quote by Robert Louis Stevenson. Life is not a matter of holding good cards, but of playing a poor hand well. You have played your hand more than well. God bless.

Unknown said...

Your mom shared the news with the E-Sarcoma group. You started fighting Ewings the year before I did at Kaiser Morse. I didn’t exactly get along with Dr. H***N, as he could never answer my questions or even givee the exact drug treatment protocol. So I went to Roseville for my chemo even though it was a heck of a ride to get there with the nausea during rush hour traffic, especially on the 5 day chemo weeks. I was not supposed to see 2010 much less be alive today. It took me 3.5years to reach NED and 3 times they wanted to hospice meand I declined. When Kaiser could do no more for me I moved to UCD, where I should have been sooner rather than later. Needless to say in Dec 2012 I started dialysis and Jan 2013 I reached NED, now I have about 2 more years before I can try to get listed for a kidney transplant. Anyway, I just wanted to say you are and have been an inspiration to me for years. I love how you have fought for your independence and have lived your life on your own terms rather than what cancer has thrown at you. Much love and good vibes to you, your mom and your care team. 💛💛💛 - Jenn Stefanick Sacramento CA

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Unknown said...

I very sad to read this. I always check your site, hoping to hear good news. I don't know what to say but try to make the best of your time.

Anonymous said...

this sucks. what a shit hand.
keep hoping, though. i wish you all the best.
like so many others, i've been following your blog since jenks. you've touched so many with your wonderful art and writing, and your fire to do things that matter and leave a positive mark on the world. keep kicking ass!

Anonymous said...

I have checked in on you, even though I don't know you, for a long time now. I liked when there was no news because I knew it meant you were having a good life and didn't have time to blog. I am so sorry that you are at this point. Know that you have touched lives. Your shuffle has given people hope, strength and inspiration. Your shuffle meant a lot. I will remember this story always. I am really sorry.

Eve said...

I have been reading your blog for years, but never before left a comment. And now that I am I don't really know what to say. I don't want to say all the usual cliches, but I guess I don't know how else to say how sorry I am to hear this news, but how glad I a that you are not just giving up. I know you have inspired so many people, and I am just one more. But I guess what I wanted to say is that, while I've been going through some quite difficult stuff lately (losing my best friend to suicide, a sexual assault, my mum getting cancer...), whenever I read your blog it helps me I guess to see someone else who is dealing with a far harder situation, and still going out and living life and not giving up. So i guess what I'm saying is it helps me to stop sitting round feeling sorry for myself and get out and live my life when some many people such as your self would do anything to have more time...
Good luck, I will be watching from the sidelines and cheering you on :)
(p.s. I also followed your friend Melissa's blog, and it was so clear how much you loved her, and I was so sad to read what happened with how you were treated by her family. I actually went to college with your friend suleika, which is how I started reading suleika's column/ blog, and then yours and melissa's. You guys are all amazing:) )

Anonymous said...

i'm so sorry. you are an incredibly strong and talented woman, kaylin, please don't forget that. sending love and prayers. xx

Unknown said...

Kaylin,
I just want you to know that I love you very much and I've been praying for you and am going to ask my bible study ladies to pray for you. Lots of hugs! May God wrap his arms around you and all of your family and friends!!!
Aunt Sharon

Teresa said...

Wishing you love, beautiful flowers, good food, starry nights, peace...

Teresa said...

Wishing you love, beautiful flowers, good food, starry nights, peace...

Anonymous said...

What an amazing woman you have grown to be.......God love and hold you always

Unknown said...

I don't know you personally but I have prayed for you & will continue to do so.

Unknown said...

I don't know you personally but I have prayed for you & will continue to do so.

Anonymous said...

Hi Kaylin, this is Gini <3 I emailed you but I am not sure if the act is still correct....there is no space here for everything I want to say...I am thinking of you constantly and am sending you all of my love and wishes and continue to do so! The more private things are in the mail....My whole family and toula& friends are sending you love and support! I wish I could book a flight and just get over there....I miss you...I hope this finds you. Gini

jdanel said...

This is a shit hand, but I am going to hope alongside you.
I have never commented on this blog, but I have been following it off and on since 2010. April 7 is my birthday, so I guess I sort of saw it as a sign to say Hi.
I love yr humor, the art, the ways that you exposure yourself for our sake.
My heart is breaking. I am grateful that I have been able to get to know a little bit about you over the years and I will look forward to that next post.

Unknown said...

I'm Ashamed to complain about anything....your one mighty strong women! Don't fold.....your a winner✨💗XO

Anonymous said...

Good bless you, read about colorectal cancer

Unknown said...

Have you ever considered CBD oil? It's showing lots of promise for many different types of cancer, way more than chemo/radiation. Google that along with "Phoenix Tears". Best!

Anonymous said...

Your ok?

Unknown said...

Kaylin
I want to say thank you for the insight and honesty you have openly shared with the world. I have a young 15 year old friend I have known since he was born on recurrence cycle two on ERMS. He has found guidance, and solace knowing your story. He has a hard time reaching out to those he meets at the hospital and to those around him who are not going through what you both have been through, he hides the truth from them. Your essence is creative, cynical with the right infusion of self deprecation and humor. You have made a huge difference sharing your story through the tunnel of narratives the internet has blasted at us. His chemo stopped this week too. You have made a large difference for both Dylan and myself.

Margaret said...

Kaylin, please post again. We are worried about you. I'm so sorry for the shitty hand you've been dealt. Can we help? Please ask.

Let me recommend said...

I was close friends with Melissa Carroll. I found your blog randomly and realized I had see her painting of you in her show before she passed. Your story is inspiring, thank you for sharing with the world

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