Tuesday, November 17, 2015

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 about 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.

Most of all I miss Melissa. I haven't been able to talk about her since her death and the way it was handled with her parents. In the end she developed animosity towards me because I was in remission at the time while she was the one dying (at least, this is what I was told by friends). I tried to understand it-- 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. I was happy to be the scapegoat if that helped her cope. And then her parents banned me from attending her funeral-- the funeral 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. It felt like I wasn't allowed to mourn my own sister's death. I wrote an elegy that I never published. It just never felt right. 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 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!

Thursday, September 24, 2015

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.

Saturday, April 26, 2014

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.

Wednesday, August 7, 2013


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!

Monday, March 25, 2013

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!

Thursday, March 14, 2013

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.