Radiation to my brain and entire spinal column was absolute hell, that is not hyperbole. I'm still experiencing the effects almost a month out. I have scans on June 9th to see how my cancer has progressed/regressed at this point. There's no more viable treatment options and they have recommended me to hospice. I'm still hoping to try a clinical trial if it fits. We'll see. Right now, after being in nonstop treatment for the last year, I just want to live life feeling as well as possible.
Which leads me to my art show opening this Saturday in Gramercy park-- I hope any readers from the NY area can come. Here is a flyer, and I'm also posting my artist statement below.
I believe that a human being is fundamentally a spiritual being, and that our visible world must be extended to encompass all of the invisible energies with which we have lost contact, or from which we have been alienated.
To make art is to take from one's inner world and make it material, to give it life in the physical realm. Keats said that poets are the midwives of reality. Our thoughts and feelings are diaphanous and ephemeral, yet our creation can be sensed and shared. With this we can communicate what is otherwise unknowable and save what would otherwise be lost.
As the artist or midwife functions as a bridge to another world, so, too, does the Medium vacillate between material and immaterial. In the nineteenth century, Mediums would display an emesis of cloth from various orifices, known as ectoplasm—the physical manifestation of the soul.
In Brazil there is a long history of Spiritism, a mysterious mélange of Catholicism and shamanistic mysticism— the belief that the medium is a conduit for spirits, and those spirits have the divine ability to heal. After the trauma of battling cancer for almost a decade, I set out on a pilgrimage to see the renowned Spiritist medium Joao de Deus.
It is said this faith healer conjures the spirits of the greatest doctors throughout history to perform psychic medical miracles. I was, and still am, in need of a miracle. My journey to Joao was as much about finding hope as it was about finding a cure.
Viaticum is the receiving of the Eucharist, the bread and body of Christ before death. In times before Catholicism, pagans would place a coin in the mouths of deceased to provide toll for the underworld. The viaticum can be considered provisions for a journey— it is meant to provide spiritual victuals and safe passage.
According to Beuys, art possesses curative properties; the function of art is to heal. The creation of this series is my own Viaticum— sustenance for the spirit, fuel to keep going.
Oh beautiful Little One. No words exist to express how sorry I am that you are going through all of this. I only went through it as the wife and caregiver.
What a brilliant artist you are! What an amazing accomplishment to have pulled this show together. Your artist statement speaks to my soul and reveals what a bright, shining star you are. “I believe that a human being is fundamentally a spiritual being, and that our visible world must be extended to encompass all of the invisible energies with which we have lost contact, or from which we have been alienated.”
Oh how I believe in that too. I also believe part of the purpose for this life here in time and space is to obtain connection of the human spirit, and that the love stays here, just as it goes with the one entering Eternity. I feel the love of my husband still. I hope that you will have the strength to write about your pilgrimage.
I pray for miracles, hope, and peace for you and the strength to complete your work. Please know that you matter; all you have done matters. Your feet walking upon this earth have created wondrous ripples that will continue to spread, your words have opened deaf ears, and your art has brought wonder to hearts as hard as stone.
I wish you peace, Beautiful Little One, and for all who love you.
You don't know me and you probably never will. I watched your story on TV several years ago and started following you then. You story breaks my heart but also proves that you can overcome anything! Your such a beautiful person inside and out! You have overcome so much in such little time and was able to get through it all no problem. I just wanted to say that your very strong and I am praying for you. Also that you have a complete stranger in your corner rooting you on! You got this boo! Don't let anything tear you down!!!
So bummed...I will be getting into NYC July 2! So hoped to see this...as a fellow Askin's Tumor/Ewing's Survivor/artist and art therapist....If you want to meet up, let me know!
You are such a beautiful and talented soul. And as Deborah said, you have created wondrous ripples - your words and courage and wit have touched so many. You are in our hearts forever.
There are many instances of full remission through faith, and or alternative medicine; CBD oil, juicing with cannibas, vitamin C IV therapy, LDN (low dose naltrexone) plus amino acids, ESSIAC tea, cold sheet treatment, macrobiotic diet- Kushi institute in Massachusetts, lycopene, trace minerals, ozone therapy, lemon juice/ baking soda, near infrared light, just to name a few. Western medicine is not the only way to treat yourself. Cancer loves an acidic environment and sugar. It hates oxygen and heat. You can try more than one of these treatments at a time, like western medicine.
You seem lovely and talented. Keep a positive attitude, faith and never give up. All my love, Billy Sea
Hi Kaylin, sorry to read this news. I don't know if you remember me, but I was getting my primary treatment at MSKCC the same summer you were getting irinotecan/temozolomide. I was the then 31 year old guy with a prosthetic left leg. I've since moved out to California, relapsed twice, and am on treatment for the second one. After relapse #1, for which I got cyclophosphamide/topotecan (I had irinotecan and temozolomide during my primary treatment), I thought I'd be out of chemos if it came back again, but I'm on another combo that's been able to alleviate my symptoms: trabectedin and irinotecan. There's also a phase I trial of a targeted Ewing's drug that should be starting at MSKCC very soon. Don't give up!
hi kaylin-- i'm so sorry that you're suffering right now. you are a witty, talented, strong person who is making a tremendous difference in this world through your writing and art-- and all while facing an illness that most of us can't even fathom. thank you. you're incredible, and i appreciate your candor and strength. wishing you the very best, no matter what. much love from a stranger.
My name is Ellen Preston. I am the marketing arm of a group working on a compound to address Ewing's Sarcoma. My friend Lauren Otsuki licensed a compound currently in clinical testing and I am helping her recruit for a clinical trial. I came across your blog and would like to connect you to a clinical trial. This is the press release on the trial.
June 15, 2016 in News
Tokalas has started Phase 1 clinical trial with TK-216 in relapses and refractory Ewing Sarcoma patients. Details can be found at Clinicaltrials.gov under Tokalas or Ewing Sarcoma. Patients are needed to reach out to Joseph Ludwig at MD Anderson in Houston (email@example.com), Paul Myers at memorial Sloan Kettering in New York (firstname.lastname@example.org) and Noah Federman at UCLA (NFederman@mednet.ucla.edu) to join the trials.
If you do not meet the trial requirements, then I have asked that you be able to proceed under what is termed "compassionate use". Paul Meyers (Principal Investigator (PI)) must agree to treat you and he can get compassionate use since he has an open study at his center; the PI simply has to file a additional paperwork. PLEASE LET ME KNOW IF THERE IS ANY DELAY AND I CAN EASILY GET INVOLVED.
I wish you well and you inspired me with your thoughts. Please let me know if you encounter any delays whatsoever.
how was trabectedin/irino? I will be starting soon. would love if we could talk via email, tried to find yours to no avail...
Hi ellen, have talked to Meyers about this study but he says I am disqualified due to having previous cancer in the brain. Apparently there are only 3 ppl currently in trial and it is closed now. I keep asking about TK216 (4th time now) and every time he strongly says it's not for me :(
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