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.




--------


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.

Chemo 3.0

Just had my first round of Cyclofosfomide and Topotecan-- my last hope defense against the Ewing's Sarcoma that I've been fighting for the past seven years. My hope is that this yearlong regimen will give me another remission, perhaps a year or two, and in that time a promising clinical trial will finally come to fruition. For now it seems like a pipe dream, but it's my only hope at extended life. If this chemo doesn't work, it will be palliative radiation and surgery as tumors arise, until they become too numerous and dangerous, and then I will be considering hospice, and my own death.

But for now, I'm back to the middle, back to purgatory. The brain radiation worked-- my scans look promising. I have no active tumors in my body, but it is obvious Ewing's is floating around waiting to take hold again. I will come to Sloan for my daily communion and pray it extends my life.

First day of Cyclo/topo was mild & I didn't need nausea meds. The hardest part is psychological-- back to the infusion suite, the familiar chairs and IV pumps and sugary apple juice. Every fixture the same, yet everything has changed. Most of the nurses I used to know have gone in the last few years (except my favorite, Louise, aka Weezy, who is still here twice a week to take care of me like old times). The most poignant difference is the loss of all of the friends I've met and loved here. My mind goes back to the last chemo year and our little group of young unfortunates, how we'd congregate in the dark, back recliner area and pass the time talking about popular culture, gossiping with the nurses, and complaining about cell counts. They were a light in the middle of those dark days, and they are not here anymore. And not for the reasons I'd like. I'd like to say they've been cured and have moved on with their lives. But that hasn't been the case with anyone I know. Ewing's either kills you, or you survive a little longer until it tries to kill you again. The closer you get to the end of the book, the easier it is to predict the ending (or will there be a twist?).

Most of all I miss M. I haven't been able to talk about her since her death and the way it was handled with her parents. In the last few months she developed animosity towards me because I was in remission while she was dying (at least, this is what I was told by friends). Whatever it was, she never told me, just cut me out of her life. I tried to understand her thought process-- I understand the anger of having your life cut short for no reason, and I understand the frustration of having nowhere to put that anger, no one to blame. It was painful, but I was happy to be the scapegoat if that helped her cope. And then her parents banned me from attending her funeral-- the memorial of my best friend, roommate, ewing's sister. That I could not understand or forgive, I can't even express the pain I felt during that time. I wrote an elegy that I never published. It just never felt right-- as if I didn't have permission to mourn this person who had such an impact on my life. To this day I don't speak with her parents and I have no idea what caused that animosity in those last days. I'm just left with unbelievable pain. And that pain is front and center now that I'm back at Sloan, getting chemo like we used to together, as sisters.

I'm here hooked up to the IV getting premeds as I write this. The idea of chemo for another year doesn't make me cry. Writing about the pain that came with a best friend's death and the rejection I felt from her family-- that makes me cry. I'm not even sure why I am finally sharing this. I've carried it with me for the past year, maybe this will release some of that pain. Maybe I will publish that elegy soon.

I promise I'll write something more upbeat soon. New projects and new developments.

If you look back through my archives, you'll notice I used to joke about everything.

7 years later and I'm a little burned out.


Thank you for all of the well-wishes in the comment section, I wish there was a way for me to respond to comments individually. Rest assured I read them all and appreciate every one. Your love & support have gotten me through, the least I can do is keep writing. Follow me on instagram @kaylinandres if you can, I tend to update there more than here!

Dynamite or Curtains

It has been over a year since I've updated this blog. I've never been a particularly gregarious person, generally I am quiet and keep to myself. I started this blog in 2008 because I couldn't find a single YAC voice out there in the internet ether that matched my own. No one was sharing their story openly, honestly, in a way that might help fellow young cancer warriors prepare for their own fight. I created what I needed to exist at that time. Now there are thousands of YAC blogs, twitters, tumblrs and instagrammers candidly sharing their respective journeys. I felt my voice was no longer needed. Plus, I was in remission after four cancers and desperately trying to rebuild a normal life, yet again. In the interim I worked freelance art production with some amazing artists, and planned a new series of photographs and sculpture centered around themes of healing and renewal. After two years of remission I was finally allowing myself to consider healing, to consider the future.

And then the headaches started.

The first one, early this summer around my 30th birthday, I assumed to be a migraine. Though I'd never experienced a migraine in my life, I knew from friends that they often came with light sensitivity and could be intense enough to leave one bed-bound. This headache did just that. But it resolved by the next day, and when I had another one a few weeks later, I popped some Exedrin and thought nothing of it.

... Until they got worse.

The day-long headaches turned into weekend migraine marathons that kept me in bed in a pitch-black room. The pain was so severe it caused me nausea and vomiting. And then, just as suddenly as it came on, it was gone again. After a few months of these gut-wrenching brain-aches progressively getting worse, I gave in and went to the ER for a CT scan and MRI. Doctors soon told me I had a mass on my pituitary gland that was pressing on my optic nerve. The neurologist reassured me that pituitary adenomas are benign and extremely common, especially in women. He confidently proclaimed that my migraines were a separate issue and had nothing to due with the mass. Now, if you know my history, you know how many times I have been misdiagnosed (like the time Bellevue doctors told me my giant lung tumor was a hernia), so of course I knew he was full of shit immediately. Problem is, you're still at the mercy of your doctors, so I had to wait three weeks before being re-scanned. By that time the headaches had become constant and I can honestly say it was the most intense pain I have ever experienced. So, I was relieved when the neurologist frantically called me after my scan, telling me to come to the ER immediately.

Turns out the mass had grown, which means cancer. They wouldn't know the type of cancer until after the surgery-- they thought it would likely be ovarian or thyroid (both of which I have had, and have hormones controlled by the pituitary). The dark horse in this race was good 'ol Ewing's Sarcoma-- though they had never heard of it setting up shop in the pituitary, it was possible. Just very, very unlikely.

For the surgery they went up my nose and drilled a hole in the back of my sinus cavity. They removed 75% of my tumor, while the remaining 25% was left in-tact because it surrounded my delicate optic nerves. The neurologist said I was very, very close to losing my eyesight permanently. It's amazing how lucky I've been in these strange, small ways throughout the years, amidst so much misfortune.

Surgery was terrible and painful, but I healed without complication and started immediately on 6 weeks of radiation, of which I have only two days left. Brain radiation has left me incredibly tired, nauseous, weak, and forgetful. My hair is falling out, but not noticeably to anyone else, thank god.

So... is it a boy? Is it a girl? No,  it's Ewing's!

Now that my very aggressive and deadly bone cancer has come back for a third time, I don't have many options. It is almost a certainty that it will kill me. There is one regimen of chemo left that might prolong my life, but of course chemo is absolute hell, and I am on my own here in NY with no family or husband to take care of me. I'm not entirely sure I can handle it on my own, for the third time. So now I am trying to decide what the rest of my short life will look like: do I stay in NY? take a break to feel healthy and enjoy myself before chemo? Or start right away to maximize my chances of remission? Should I move back to CA where I have family to take care of me? Should I be planning my death? How should I spend the rest of the life I have left? All questions swirling in my head, all questions I might never have an answer to, until life unfolds.

One of my favorite books is a little known novel by Jack London called The Star Rover. I discovered it two years ago, right as I was beginning my last remission. It has nothing to do with the outdoors or adventure, at least not in the physical sense. It's about a man in solitary confinement who is forced to endure torture in a straight-jacket for months at a time, weakened and sensory-deprived. He learns to project himself outside of his body and through time to past lives that he recounts in vivid vignettes. With this meditation he escapes the jacket and is able to survive, mentally and physically, torture that would normally kill a man. I related to this novel on such a deep level, because his description of solitary and torture in the jacket is so, so much like going through intense chemo and illness. The man in the book is being tortured because the warden suspects he has hidden dynamite somewhere (he hasn't, of course, he is our enlightened protagonist and remains truthful). The Warden doesn't believe him and tries to kill him several times, all unsuccessfully. Throughout the book the Warden says the phrase, "Dynamite or Curtains", and he echoes back, "Dynamite or Curtains". I think of this saying often and have adopted it as a battle cry: I can either accept the extraordinary, the spark of life, the fire, or I can accept death. I will always choose the former.

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.

ALEA IACTA EST

Portrait of me and scar by Melissa Carroll

It's been an eternity since I've last posted. It's been 10 months of chemo and after this week, I'll only have one cycle left. It's been rough, but we have no choice but to move forward.

I haven't felt like writing about myself-- this blog has 5 years of my story documented, and with the mtv show I feel I've said my piece. For the past year I've just been going through the chemotions, the same old, same old. Now that treatment is almost finished, I am starting to look forward. I want to use this blog as a platform for other young adults with cancer. I want to showcase their talents and encourage others to create.

Since moving to New York I've had the enormous pleasure of making friends within the young adult cancer community, and without them I doubt I'd have made it through my recurrence sanity intact. I can't stress enough how important it is to have someone to vent to, someone who understands what you're going through, someone to commiserate with, someone to party with (cancer patient style: drinking 4 seltzer waters and home by 12). I noticed early on that all of my cancer friends have an unnervingly low bullshit tolerance-- we skip the smalltalk and go straight for the meaningful conversation, whether it be about death, hope, fear, or of course, cancer. We share our scars and our stories eagerly. There are things I'd never be able to express to anyone else in my life, but my cancer friends get it.

My cancer friends are also amazingly talented and strong individuals that have managed to balance the rigors of treatment with their respective creative endeavors, from poetry to journalism, painting to songwriting, photography to social activism. Like me, they've used their skills to express their cancer experience to the world. Here are just a few:

hanging by a thread, Melissa Carroll

I met Melissa through this blog-- she contacted me years ago and we became fast friends with much in common. We both have Ewing's Sarcoma and both relapsed around the same time. We also live together and look similar-- we're like the Doublemint gum commercial but with cancer. Melissa is a brilliant painter and lately she's been doing a heavily introspective series of watercolor self-portraits that capture the feeling of cancer like nothing I've ever seen before. She's a master of subtle expression; that look in your eye when you're too nauseous to speak? She can capture it.

Another Friday Night, Melissa Carroll

Melissa is having a solo 1-day show at Andrea Rosen Gallery 2 in NY August 22nd. I will be at the opening, come and say hi!

This is a portrait Melissa did of John. I met John at Sloan Kettering where we're both getting treatment. He's 21 and has AML leukemia, but more importantly, he's a talented skater and songwriter.  John has a blog that continues the tradition of candid cancer confessional, and I find myself relating to so much of what he has to say. You can find it here: http://johndschmidt.tumblr.com/ 

Kristin, Erika, Suleika, Myself, Melissa: cancer babes

I met Suleika earlier this year. She is battling leukemia (soon to be in remission) and has accomplished more at 25 than most achieve in a lifetime. She writes a regular column in the New York Times about her cancer experience and addresses issues important to the young adult cancer community. She's also the spokesperson/ambassador for numerous charities, lectures at colleges nation wide, is writing a book... I am in awe of her energy; I'm tired just from writing this paragraph!

memento mori: death rules all men

And a small progress shot of some work I'm doing for a group show scheduled for early October featuring 5 artists/cancer survivors. I'll be designing a small capsule collection and showing embroideries with the hair I grew during 3.5 years of remission, stitched on hospital gowns. 

All of us have shared our story for the same reason-- an overwhelming desire to ease the suffering that we ourselves have felt, and a desire to connect. I've felt a genuine connection with every young adult cancer survivor I've met and even though at times it feels like there is no future, only a dead end... that end is false. The future is mutable and ever-changing. There is ALWAYS hope. We are the future until our last breath, and I want to encourage others to continue creating, even with cancer.

Have you had cancer and channeled your creative energy into expressing your experience? Did cancer help you find your voice? Post links in the comment section, I'd love to see everyone's work!

Thank you to everyone who has donated to my special-needs trust. My heart swells.

It occurs to me daily that I am almost entirely surviving on the kindness of strangers.

I think of old wildlife documentary footage showing altruism in social animals like elephants, taking care of their sick & old because they still offer some kind of benefit to elephant society. I feel like a sick elephant sometimes.

Since the show started I've been getting heaps (hundreds) of emails and messages from all walks of life, sharing personal stories in matched intimate detail to what I share on the show. It's humbling, heartwarming, and surprisingly-- emotionally exhausting. I've read each one but haven't even begun to crack the surface of responding to them. When someone takes the time to tell you their life's story, one feels the need to respond with the appropriate intimacy, which takes time and consideration. So apologies if it takes awhile to get a response from me. I'm going through chemo. Sometimes my friends & family don't even hear from me for a few days!

Thanks again to everyone who has reached out thus far-- I love reading every message & they definitely make my day!

dreams less sweet

currently on my second week, 6th cycle of Irinotecan & Temozolomide.

six more months

and countless hours of pain & nausea

but we do it for that glimpse of light-- of living again. however short it might be, we soak it up.

tonight I am on a Gen P-Orridge lyric binge as I try to distract myself from chemo effects. Headphones on, too many drugs to name coursing through veins.

in the morning
after the night
we fall in love with the light

you can download a little chemo playlist of PTV favorites here. perfect for neutropenic fevers and astral projections.

Vintage Cancer #2: Beware the Quack

mtv is using my golden tears to raise cancer awareness, and I'm ok with that.

After the surgery last month I had to learn to walk again without part of my lung & diaphragm. The very first day they had me sitting up. The second day I took my IV pole, two vacuum-suctioned chest tubes, a portable motor that sounded like a shop vac and 3 nurses in tow for a walk (if you could call it that) down the ICU hallway. We even tried climbing stairs, but the tubes from my IV only allowed me to take 3 steps up, which I think would be manageable for even the most feeble degenerates among us. I stopped practicing the stairs after that. But I kept walking, and 3 or 4 days later I was doin' laps like lance armst--- I mean, like a pro. It's amazing how fast the body can recover.

After I was discharged from the hospital I went right into chemo cycle #5. I think the extra pain meds have made me extra nauseous this time. There are lots of other "extras" that pain meds give you, like extra hard poop. extra heavy eyelids. extra street cred. extra helpful friends.

For the last few days, Jon & I have been editing the final version of the comic. It's come so very far from the hair-brained scheme we hatched years ago. I had time to kill in the waiting room before one of my (many) doctor appointments, so I pulled out a test-print and started to read. In no time I was sucked into a colorful world that echoed, in a surreal way, the hospital around me and issues I was immediately facing. Jon's drawings are delightfully intricate; you can take your time on each page and notice new details with every read. I was disappointed when  my name was finally called, because it meant a transition from this magical cancer-comic world to real world-- and real cancer. Bottom line: great for making hospitals more bearable. I can't wait until issue #1 is finished.

I suppose I should mention: I will be featured on Season 2 World of Jenks on MTV, which premiers this Monday. The crew followed me for a year as I moved from San Francisco to NYC to pursue my career and a cancer-free fresh start. I'm horribly embarrassed about the whole thing, but I remind myself that I participated in this project to promote young adult cancer awareness and issues of survivorship. When I was first diagnosed I felt so shamefully alone-- my cancer happens to one in a million, and it's even rarer in young adults. The prognosis is grim, but there are a few survival success stories out there if you look hard enough. I wanted so badly to find someone I could relate to, someone to learn from, some lucky soul who had found the light at the end of the IV drip and was ok now. I wanted to be ok too, someday. What I needed was empirical hope. I needed proof through personal experience that my cancer was survivable, that pain is surmountable, that the future is inevitable. I needed accounts of young adults overcoming the physical & emotional upheaval of cancer so that I could be better equipped to navigate my own tumultuous journey. Trouble is, until very recently, people have rarely been encouraged to open up (I mean really open up) about Cancer due to negative social stigma, fear of vulnerability or judgment, or outmoded cultural mythologies of illness. Eff that, let's talk about it! Let's set the record straight and help the newly diagnosed. Empirical hope, knowledge, camaraderie-- this is what I wish to give others by sharing my story with MTV.

Hope creates strength, and with strength we can survive. to ride ziplines.

Stupid Cancer

I wore this Stupid Cancer wristband during my surgery as a good luck charm. Still in hospital but hope to be freed soon. Flipping the bird at cancer, not you...

more things on strings

I awoke to find this balloon hovering suspiciously close to my face, obviously mocking me with its grotesquely stretched mylar smile. 

I punched it.

[EDIT: Don't get me wrong, I love smiley balloons! Keep them coming!]

It's like looking in a mirror...

If you're curious to know what I look like right now in ICU after Friday's surgery, this Iranian space monkey depicts me perfectly, from the velcroed-in leg restraints and little socks, to the bald head and sad face of pain and pure terror of his fate in life. Thank you space monkey, for making my life a little easier. Now I don't even have to take a picture.

Saddest picture ever.

Monkey business aside (yah I went there), surgery went fantastically well and I am slowly healing. They took out what was left of my tumor, the lower right lobe of my lung, part of my diaphragm muscle, and scraped some cancer from the vena cava that leads to my heart. I've had an epidural & two chest tubes put in, and I'm of the opinion that three is enough for one lifetime. That shit HURTS.

It is very hard to walk due to weakness and shortness of breath, but I'm working with a physical therapist every day to strengthen my stamina. I'll be inpatient at SK for the next week.

I hope your fate is as good as mine, space monkey.

Wig Post

A good wig is hard to find, amiright?


This time around I'm really liking South Korean-made wigs from Gabalnara-- cute styles & a very realistic quality... you just have to look past the creepy "Ulzzang" faces.