Thursday, June 2, 2016

viaticum


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.









































Viaticum

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.
 —Joseph Beuys

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.



23 comments:

Deborah said...

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.

Lovelovelove,
Deborah

Amelia Smith said...

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!!!


xxoxx
-A

Obsessedwithlife said...

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!

Anonymous said...


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.
Kathleen

Anonymous said...

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

Hormozd said...

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!

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

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.

Rubyenzo said...


Kaylin,
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 (jaludwig@mdanderson.org), Paul Myers at memorial Sloan Kettering in New York (meyersp@mskcc.org) and Noah Federman at UCLA (NFederman@mednet.ucla.edu) to join the trials.

Kaylin,
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.
namaste
Ellen Preston
office 619-501-5059
cell/text 415-754-5351
ellenpreston@gmail.com

kaylin andres said...

how was trabectedin/irino? I will be starting soon. would love if we could talk via email, tried to find yours to no avail...

kaylin andres said...

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 :(

Danielle Martin said...







I was diagnosed with breast cancer and i lived with that diagnosis for more than 3 years, spending all I have and losing my self in the process, its what I wouldn't want to see any person go through, Luckily i had an encounter with Dr Jose, a renowned Italian doctor that helped me overcome my cancer in less than two and a half months, just with the use of herbal medicine and spiritual help, i can now boldly say I am cancer free and a proud living testimony,he is known to be able to tackle any type of cancer found in the human body, God forbids any one should suffer here on earth, thats why I believe he created all these herbs, if you also want to clear your doubts and fight cancer to the barest minimum, take the bull by the horn and avoid death, you can contact my Doctor, by his email joseherbals28@gmail .com

anne said...

cancer
In Dec. of 2013 I was diagnosed with terminal
cancer at the age of 39. The doctors could give
me no hope. I did have chemo and radiation, the
doctors thought that could prolong my life for a
little while. In March of 2014 I had surgery, thats
when they found that the cancer had spread to
my lymp nodes in my right hip area and couldn't
get it all with the surgery. Now it looked like 3-6
months is all I would live. It was a very
aggressive form of colorectal cancer. But WhenI came across doctor Kumar from India he cured my terminal cancer with herbs I'm living very healthy today you too can be save or someone else contact the cancer and kidney doctor via email: DR.KUMARDAVID42@GMAIL.COM

chirag devansh said...

WE WELCOME YOU ALL TO DEVANSH HERBAL HEALTH CARE.
We have Quality Rick Simpson Cannabis oil and medical marijuana for smokers, all types of cancer cure, insomnia,fibroid,Diabetes,back pain,we also have the herbs that reduces stress and other illness. We are selling our products at very negotiable and workable prices. Apart from our very magnificent prices, when you buy from us, you are assured of the highest quality and purity available in the market,and we are 100% sure of our product, with a guaranteed discreet courier shipping or a special 24 hours confidential overnight delivery of the product to your address. We respect and value your privacy and will dont share your information with anyone. We offer discreet and Reliable packaging and delivery. -Fast and reliable shipment within 24hours within the US and 48 hours internationally, using courier service. Call or Text::::: +1936-2283-155, Email: devanshherbalheathcare@gmail.com for more information

karen dish said...

WOW ALL THANKS TO DR WILLIAMS I HAVE NEVER BELIEVE IN HERBAL REMEDIES.
my 28 years old daughter have been a patient of breast cancer . I had tried a lot of anti viral med prescribed to me by doctors over how many years now but I could not see any improvements in my daughter symptoms. One day when going through the internet , i got to know about this great Herbal Dr who uses his herbal remedies in curing people from cancer,quickly i contacted him and he prepared a herbal medication for my daughter which i received and she used it as instructed by dr williams. After few weeks the improvement were very visible.the redness and nipple discharge gradually stooped ,on thing now she is so full of life. I would recommend this to all my friends,families,around the globe suffering from cancer.you can contact him through his email on drwilliams098675@gmail.com.for advice and for his product THANKS TO YOU ONCE AGAIN DR WILLIAMS

thepinoyflix said...

Both sites listed here allow you to search for car shows by year. This means you can check out shows that happened Pinoy Flix New Videos years ago.

thepinoyflix said...

TV in 2011 promises many with individualism, unless you are waiting for the new take of "Shameless" Pierce "Mildred", "Human Being", "Skins", "The Killing" Wilfred "or" Camelot.Abrams Super 8 "comedies for adults are plentiful, Jennifer Aniston has been busy with five new films and filmmakers from the first level as Wes Anderson, Steven Soderbergh, Martin Scorsese, Joe Wright and Cameron Crowe are great films. 2) This is a gallery of photos and no pictures available.And however, as Hitfix presents its 30 most anticipated Pinoy Flix HD Video of 2010.

thepinoyflix said...

The majority of ordinary people find that eating out in a price Atlanta bistro is way too pricey. The great news for them is that any individual can learn tips on how to Watch Pinoy Flix HD Channel conserve costs as well as always dine well in a wonderful Atlanta restaurant.

thepinoyflix said...

In fact pretty much anything can be manufactured with a USB connector on the end. These customised versions make a Pinoy Flix Latest Video real impact and are ideal when there is a particular product to launch or promote.

thepinoyflix said...

Having a professional could help a family avoid the deputes that occur in Pinoy Flix Online Serial comes and could save money in the long term, since so many families have to pay extra to fix their DIY mistakes.

thepinoyflix said...

Aside from cooked food, Filipino food is also richly enhanced by the wide variety of fresh fruits available in the country. Pinoy Flix Online Tube and lanzones are among the most popular and most loved of these fruits.

thepinoyflix said...

Also available for experimentation from lutong bahay website are other free Filipino recipes like Jollibee style spaghetti recipe, siopao sauce recipe, hopia recipe, sylvanas recipe and best ube chiffon cake recipe. Food articles can be read Pinoy Flix HD Video, such as the Lanzones Festival 2010.

Jessical Alba said...

ALL THANKS TO DR WILLIAMS WITH HIS HERBAL PORTION I WAS COMPLETELY CURED FROM BREAST CANCER.
I'm here again to appreciate. DR WILLIAMS God will always continue to bless you more abundantly, for the good works you done in my life, I will always keep on writing good and posting my testimonies about you on the Internet, I’m Jessica from Orlando, Florida. I was tested breast cancer positive, I saw a blog on how DR WILLIAMS cured people with his herbal portion, i did not believe in natural medicine but i just decided to give him a try, I contacted him,and explain my situation to him,few day later he sent me the herb, after taking doc Williams herbal medicine for few week i also got my healing with his herbal portion, i am so happy. If you have any type of cancer problem ,you can contact him on Drwilliams098675@gmail.com for advice and for his product,i hope this testimony also help some one out there .