everything was beautiful, and nothing hurt

One year.

Without a doubt, it's been the saddest and fastest-moving year of my young life. Kaylin died on November 21, 2016 in NYC, the day before she was set to fly home. For good. One of the last things she texted me was "I'm in trouble..." and "in so much pain... just want to die." I was at work that Monday morning when our mom called and said "hi, Rhoni" in that voice I've grown to know all too well over the past nine years. It was the voice I heard eight years prior, when she called while I was in line at Best Buy picking up season four of The Office. Kaylin was crying and googling "ewing sarcoma survival rate" when I got home. I was only 19, I didn't know what to say and I was too afraid I'd say the wrong thing. So I made a joke about our mom's cat that was staring at us. We both laughed and then we watched The Office.

This call wasn't all that different than that first one. With the first call, she was only 23 and I thought she was going to die. With the last call, she was 31 and I knew. Our parents and I tried to get to New York as soon as we could, but it wasn't fast enough. We're all very grateful that she had her friends with her at the hospital. She was far from alone. One of her closest friends called me, our dad, and our mom and left his phone to Kaylin's ear so that we could each say goodbye. We have no idea if she could hear us or if she knew what was happening, but it meant a lot.

We spent the next couple of days packing up Kaylin's apartment. Ice flew back with me and he's enjoying his new forever home at our mom's. I still try to pet and speak to him in the very particular way Kaylin always did.

It seems like all of this just happened a couple months ago. In reality, so much has happened in this past year that I've wanted to talk to Kaylin about, both good and bad. I got laid off the day after her funeral. I found a great new job that I'm really happy with. I got my first tattoo (on what would've been Kaylin's 32nd birthday), a copy of the spade she had on her wrist. We lost an uncle, very unexpectedly. The most difficult one was probably when I got engaged this summer. Four years prior, my fiancé gave me a promise ring while we were at Disney World, in the same place he would later propose. Kaylin was the first person I told, and while she thought promise rings were kind of dumb, she was so happy for me. I'm sad that she's not here to help me plan my wedding, which she was really excited about doing one day. I'm sad she's not going to be there when I try on wedding dresses so she can tell me what's ugly (I'm just being realistic). I'm sad about a lot of things. I imagine I will be for a long time, especially as I hit these adulting milestones that Kaylin was always so excited about or proud of.

I've harbored a lot of guilt for not posting on here sooner. Kaylin explicitly asked me to continue posting for her. However, as I was looking through some of her writings to post today, I realized that she also asked me to do so when I'm ready. Considering I've only just recently stopped crying myself to sleep every night, I feel like she would be understanding. I do apologize to you all, though. I promise future posts won't detail my experiences; rather, this will be where I feature Kaylin's writing and artwork, as she intended. Apparently, I just had a year's worth of grief that I needed to articulate.

I find relief knowing Kaylin's not in pain anymore. I wish we could have seen her one last time, but she had to let go. And that's okay.

- Rhoni

"wondering when I will decide enough is enough. wondering if my eyebrows will turn white. wondering if it's the dilaudid that makes me grind my teeth at night. 

wondering if there is an afterlife

(did she really say dublet?)

wondering what will kill me? an infection to my brain? the pain? alone"

- Kaylin, 11/11/16

The headline of a new paper article published last month:

"Discovery of peculiar periodic spectral modulations in a small fraction of solar type stars."

Alien life in the form of light flashing from 243 stars out of 2.5 million.

1 in 10,000 objects with unusual spectra

It can't be coincidence-- it's more concrete than my cancer odds.

So I think it's finally time to say I'm dying, really-- I'm moving back to CA on the 22nd to be with family. I can no longer even get up on my own anymore so being alone in this apartment is pointless. There is no more that they can do for me as far as radiation or palliative chemo-- it's spread throughout my bone marrow at this point. I'm just done and I have to wait to die and I don't know how long that will take.

I'm so sad it's happening so soon. It seems like every day and week my body gets worse so much faster. And I have so much within me that I wish I could get out. So much. There is just no time.

I have writing on my phone that I hope my sister will someday share-- favorite movies or music that have been so important to me.

I hope someday my friends can make a book of my work & writing that inspires them-- I guess I'm hoping my loved ones will take on the endeavor, whatever they choose it to be.

As for me, I'm trying to control the pain with steroids & dilaudid as much as possible. I'm bedridden mostly. I'm composing and posting this from my phone so forgive my brevity & lack of pictures or composure. I would like to post more. I will try for more. I love you all.

I wish Planet Cancer still existed.

Now more than ever, I need that community to get me through this new phase of my life. The message boards and personal pages were a wealth of information for kids going through the dying process and it's commiseration I sorely need right now. I met my first friends with Ewing's on PC.

Then it was sold to LiveStrong (evil), totally dismantled into a content/ad-making machine and everyone left.

I'm dying.

It's happening faster than I thought-- a landslide that started with a few small pebbles and now gravity has hastened the destruction.

I'm in extreme pain all over my body. I have bone tumors in my hip, femur, up my spine, and most likely my arm.

There's no hope for treatment, only managing pain and trying to prolong function. I'm currently on fentanyl and dilaudid.

I had a phenomenal summer traveling all over Europe-- somehow, over the course of two months, I managed to suppress the cancer and pain-- I walked everywhere and did everything-- discovered new places, friends, and art. I started in Paris, wandering around, meeting new friends and discovering museums. Then took the train to Florence, Rome, Praiano, and Naples. I saw Herculaneum and Pompeii (again!). I climbed mountain stairs on the Amalfi coast to secluded beaches and rode scooters to nearby towns. I discovered Naples, my new love, and wandered the strange and superstitious alleyways for days on end. I met a friend in Paris who invited me to St Tropez, an invitation I readily accepted. After Cote D' Azur sunbathing and amazing home-cooked meals, I travelled to Berlin to stay with a beloved friend for a few weeks, before attending the wedding of another friend, in which I read a passage to her and danced all night (something I haven't done in years).

It was a magical summer.

The pain started immediately after I got home a few weeks ago.

Over the last 8 years I've watched all of my friends die from this horrible disease, and it appears to be my turn. I can't stop the landslide. Everyone handled their death in their own way. And so will I.

I'm currently starting palliative radiation for the hip & considering the move back to CA for my last months. It will be so hard giving up my dreams, finally, to this Monster. And yet, I feel incredibly lucky to have survived 8 years past my first diagnosis-- I hope I've inspired some of you to make it even longer. I've made little pieces of my dreams come true in the past 8 years, and that's more than some get. I feel blessed.

The pain is severe & I feel like recoiling but I will try to blog more in the coming weeks/months. I know you are curious, I know you want more of my story. What can I do but give that to you? My goal is to make it to New Year's-- let's hope.

More to come. I promise.

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.

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.

heart bones

In my last post I wrote about a close friend and the unfortunate intricacies of human emotion. We must all be allowed to mourn-- to rob someone of that right is selfish and inhumane. My reason for finally opening up about this deep wound I've been concealing is as follows: this is a confessional blog about young adults with cancer, and this is something we all go through yet never share. I've watched many of my brilliant friends die unfair, painful deaths at a young age, and I know I await a similar fate. Each person/family deals with trauma in an entirely different way. Some need you more, and you feel guilty for not being able to be there enough. Some push you away out of misplaced anger, or due to a coping mechanism, or simply to conserve energy. With such a delicate and confusing subject, you try to take cues and read between the lines-- you try to do what's best for your loved ones. Sometimes you get it wrong, sometimes you never know. Sometimes there is no closure, or their family denies you closure. The key is communication and empathy: the feelings involved in end-of-life decisions are never easy, and all of them are ok. We must be mindful that everyone mourns in their own way. Even anger and irrationality play a part in the mourning process. However-- it is not ok to deny someone the right to love, mourn and find the closure they need. Don't let anyone bully you into thinking you've no right to mourn: it is their own irrational & misplaced anger, not any fault of yours.

Throughout the past 8 years I've realized that there are so many variations to how the story ends. And also that it never really ends. Through the blur of pain we must keep our focus on love. I feel sorry for the people that succumb to anger (especially the ones that endeavor to cause others pain just to relieve a bit of their own) but I will love them just the same. We're all in this together.




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Chemo update: I'm on my 5th cycle of 12. It is the hardest thing I've ever had to do-- go through this intensive chemo alone and still manage to take care of myself. As the years go by, the more chemo I take, the more my body just disintegrates from the inside out. Every new relapse is harder than the last. I need a blood transfusion after every cycle. I'm too weak to get out of bed most days. I've fallen behind with friends, keeping up relationships is impossible-- I think of them daily but don't have the energy to visit or even converse. I sleep a lot. As always, I'm just trying to get through it and praying for another remission.

Usually the last 2 days before I start another cycle are my best, which means I have 4 days a month wherein I'm feeling ok. ish. Let me tell you-- I'm trying to make the most out of those 4 days. I recently took a trip to Washington D.C. to see the National Gallery, Smithsonian collection, and pandas (!!!)... life-long dream realized! I've also resumed work on an art project involving the journey to healing and death that I'd put on hold, ironically, after my relapse in July-- I'll be having a show in June, stay tuned.



Tian Tian!


I know my posts are as rare as my bowel movements as I go through treatment-- follow me @kaylinandres on Instagram for slightly more regularity.