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.

beautiful passing

It is with a heavy heart that I announce another cancer friend's death.

This one is hard, because I've never met another cancerite who reminded me so much of myself; I loved her from the moment I met her last February through a mutual friend (you MUST meet Diane!). We bonded instantly, and when she had a recurrence (in the form of a rash-- weird, right?) we talked on the phone for hours about how difficult it is to be young and ill and to have your future snatched so suddenly out from under you.

Let me tell you of the awesomeness that was Diane: She was a historical fashion dynamo which none could rival. She knew her hemlines, decades and artists, a jabot from a cravat, and I looked forward to gushing with her about fashion's obscure geniuses. She published a magazine called Zelda (presumably inspired by Fitzgerald) about 1920's deca culture, of which several copies are still strewn about our house. Even though she was only 5 years older than me, I looked up to her as this monumentally beautiful, stylish, funny, intelligent, accomplished woman. She had a black bob, just as I did. It was like looking in the mirror. And, even when she had cancer, remission, and recurrence... she never stopped working towards her passions.

I cry as I write this because I am so utterly sad I wasn't able to know her better.

Diane died suddenly last week after complications with pneumonia, which was due to chemo and her lowered immunity. She battled aggressive breast cancer and recurrence.

The day I found out was the day before my fashion show, so, in my head, it was dedicated to her. Afterwards I spent time with her good friend J, and D, at our home. We talked & drank cider well into the night. Diane had told J that I was of great comfort to her, an inspiration, and that touched me deeply, because I'm not sure she would've ever said that to my face. These things are hard to talk about.

So, Diane Naegel, I am honoured to have known you.

confessions of a cancer patient

I've always loved confessional writing. From the very first time I read Sylvia Plath whilst in the scalding throes of puberty, to my current obsession with Joe Orton's diaries and Jonathan Ames' 2009 show "Bored to Death"... I've always found truth more interesting than fiction. Maybe it's a generational thing, maybe it's because my parents were so tight-lipped about their own lives and I needed something honest to relate to. I'm not quite sure. All I know is... I like reading about people's problems.

My guess is you do too.

I've been thinking a lot about Devon lately. He came to visit me here by the beach around this time last year. I played him some Velvet Underground, my go-to crowd pleaser, and surprisingly, it was all new to him. I was glad he liked it. [side note: Muse is playing on Pandora as I type this, which was his favorite band. I take this as an omen that it's permissible to write further...]

Devon is dead now. There's nothing entirely significant about this fact-- he battled Ewing's Sarcoma on and off from ages 19 to 28, his health slowly declined as treatment options ran out, and he died. We related to each other in ways that no one else possibly could, forming our own secret cancer club. We were both realists with a dark sense of humor, prone to depression, suffering immeasurably due to one stupid translocated chromosome. Here's looking at you, 22.

Devon was a bitingly truthful writer with an ascorbic wit, authoring essays that sucked the reader into his own personal hell of illness and the oft bitter loneliness that goes along with it. Not the most pleasurable Sunday reading, but important, I think, to the collective experience of humanity. Devon SUFFERED with a capital S-- more that I can even imagine. He removed his writing from Planet Cancer sometime before his death, so it is impossible for me to re-read his thoughts, mind, soul. You see, Devon was very protective of his personal revelations, and told me he didn't think most people deserved to read them.

He did something that I find absolutely terrifying- he left without leaving anything. Except, I guess, an impression on me. His confessions are lost to us. I regret not encouraging him more towards his end of life. I was not as compassionate as I should have been.

My point? Talented insightful people die for no reason all of the time. I repeat: NO REASON. You've got to create your own reason to live. And you've got to live as if everything you care about is dying. Because it will, eventually.

I never even took a picture with Devon, just this ugly grey seascape that we both shared for a small moment.

so... that was my confession for today.

After-cancer is hilarious

When the joke is over, and the applause have ceased, when does one... carry on? When do I let go?

It's been almost two years since dear old Ewing's entered my life. I have lost a lot of brothers (I say this because, for some reason, only my male cancer friends have died), and I have grown immeasurably, to the point that I don't even recognise the pre-cancer Kaylin. Now, having graduated college and thus far avoided recurrence, I have a chance to start fresh. Completely anew. I can move away from the dimly lit Kaiser infusion rooms, the memory of suffering, the old ties and past faults, onto a life (dare I say) without cancer.

A friend sent me an email a few months back, asking for advice. She had prepared herself for death, was comfortable with its immanence, had presumably tied up all of those loose ends within one's self. And then, a second chance, balloons and bouquets, be off on your merry healthy way! What. the. fuck. do. i. do. now?

The transition between death and the "second life" we've been given is massively confusing and distressing, almost as much as the task of readying oneself for death. I didn't really have an answer for her. I am only just dealing with this now. I had my senior year to focus on, and I dove into my work with a calculated frenzy, well aware that I was using school as a distraction.

Now, school is done, forever, and I have the task of rebuilding all of those hopes and dreams that I abandoned when I was bracing myself for a premature death. I really, really thought it would come back. Maybe it will. But... I've resolved to go on living as if it won't.

So, a cross-country move is in order. I'll be moving to New York by the end of summer, and hopefully secure an Assistant Designer position. Exciting times! I crave a stable job and routine after the insanity of the past few years. Here's hoping.

Here are a few pictures of a recent Hawaii trip, courtesy of my bf's mum. It was one of the happiest times of my life. I learned how to surf... something I've always wanted to do. Yes, my hip hurt, but it felt so nice to USE my body, to be active again. No pain, no gain. That's the understatement of the year.

Everything will be Alright.

No word yet on test results.

I found out Friday that one of my Ewing's buddies died. Not "passed away" or "went to a better place", but stopped-breathing-doesn't-exist-as-a-living-being DEAD. We went through treatment together, relaying philosophy on illness, life, and death. We both subscribed to the Taoist notion of "go with the flow", as it were. When he started learning the piano, I followed suit. We were both stong and vegetarian and cynnical twenty-somethings. I had no doubt he would be fine.

If you are lucky enough to be initiated into the Cult of Cancer, your brethren will soon become your support system, your best friends, your partners in chemo crime. And, inevitably, some of them will die on you, and you have to accept it.

I am in the midst of mourning for my cancer companions, to whom I relate in experience more than anyone else, more than my best of friends, more than my own family. I think of you every day. You live inside me now, in my thoughts and actions henceforth. I live for you. You are me.



Everything will be alright.

Long time no update!

I have been busy... real busy. Moving back to SF next weekend, still job hunting, fixing up the scooter, purging all of my posessions and old memories. Life after cancer is a wonderful and terrifying thing- my body feels stronger with every passing day, but my psyche is taking quite the beating. I feel hollow and numb. When anxiety builds up and becomes too much to handle, I simply shut down. At times I'm unable to run simple errands, or even update the blogs I'm committed to. Though chemo was the toughest trial of my life, I was able to revert to a safe, catatonic state in which I had no responsibility other than getting well. Now I've got to start living again, hurrah.

I see that this blog has been listed as a Top 50 Cancer Resource on asbestosnews.com. To whoever wrote the article and the touching review, thank you! I recommend checking it out, it's got links to many other fantastic blogs in the young-adult cancer community.

Occasionally I will get emails from others who are just beginning this journey and have somehow stumbled upon my blog and found inspiration in my story. I LOVE receiving these letters. I am humbled and deeply grateful that this blog is doing exactly what it was intended to do. It validates my entire cancer experience.

In other news, my hair is gowing back! IT COMES BACK, trust me. It took about a month, but now I've got eyebrows and armhair and little downy fuzz all over my head. Lately I've been having frightening hair dreams- last night I dreamt I had an afro, while last week my hair came back in a ring around my head. Terrible!

Oh, another thing. I recieved my retroactive disability check yesterday! Holy. Crap. I am so, so thankful that I took the time to fill out all of those forms and pester my oncologist for weeks to get a testimony. I urge any of you who haven't considered SSD to talk to a social worker and see if you're eligible. I hadn't worked "on the books" since 2007 and still qualified. Without it, I couldn't possibly start my life again so soon. More info at www.ssa.gov.

Here are video/pictures from my surprise birthday party last month. It was ridiculous, the amount of love I felt that day...

The trick is to minimize wind resistance.

Sarcoma Fun Run, 3/22/09



It really was fun, I'm not gonna lie. You wouldn't think "sarcoma" and "fun" deserved to be in the same title together, but alas, there it was. We arrived about an hour late and sauntered around Golden Gate Park for the afternoon. The Fun Run didn't cure my cancer, though, and certainly didn't heighten my awareness of sarcoma. I'm already pretty aware. All I got was a pot cookie and a sunburn. it's cool though.

They ran out of free t-shirts by the time we arrived, and there was this wee little man that was furious he wouldn't get his shirt. How else would anybody know he was there? WHY DO IT WITHOUT A FREE T SHIRT?? I know little man, I was thinking the same thing. We ran into him again later and he complained that he'd gotten lost and taken a cab to the finish line. Such a grumpy little thing. I wonder if his nipples were chafing? I bet that's it. I'd be grumpy too.



Thank you Vicki and Rach, you are both amazing.