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.

on Ruysch and his mummies, death, and pleasure.

Some time ago a friend introduced me to the NLM's Dream Anatomy Catalogue, from which I've found many amazing anatomical engravings and illustrations for inspiration. This is where I stumbled across Frederik Ruysch (1638-1731), a Dutch anatomist and a pioneer in techniques of preserving organs and tissue (a precursor to the BodyWorlds franchise?). Ruysch made artistic arrangements of his material and had his own museum of curiosities. Among the displays were a number of dioramas assembled from body parts and starring melodramatic fetal skeletons, flora and fauna. He was one of the first anatomists to venture completely from scientific documentation to ars moriendi, making surreal collages from the dead and discarded.

In Giacomo Leopardi’s "Dialogue Between Frederik Ruysch and his Mummies", written in 1824, Leopardi imagines Ruysch being awakened in the middle of the night by his specimens, who for a brief interval, are granted the power of consciousness:

RUYSCH. …but since time is short and leaves no choice, let me know in brief what kind of sensations of body and mind you experienced at the point of death.
MUMMY. I didn’t notice the actual point of death.
THE OTHER MUMMIES. We didn’t either.
RUYSCH. How come you didn’t notice it?
MUMMY. Just as you never notice the moment you begin to sleep, no matter how much attention you pay.
RUYSCH. But to fall asleep is natural.
MUMMY. And you don’t think dying is natural? Show me a man, or an animal, or a plant that doesn’t die.
RUYSCH. I’m no longer surprised that you go on singing and talking if you didn’t notice when you died. ‘Unwitting of the blow, he went ahead/Combating still, and yet already dead,’ writes an Italian poet. I thought that on this question of death, those like you would know something more than the living. But going back to our subject, at the point of death didn’t you feel any pain?
MUMMY. What kind of pain can it be if one who feels it doesn’t notice it?
RUYSCH. At any rate, all are convinced that the sensation of death is extremely painful.
MUMMY. As if death were a sensation, and not the opposite…
RUYSCH. Then what is death if it’s not pain?
MUMMY. Pleasure rather than anything else. You should know that dying, like falling asleep, does not take place in an instant, but by degrees. True, these degrees are more or less greater or smaller according to the variety of the causes and to the kinds of death. In the last moment, death brings neither pain nor pleasure, no more than does sleep. In the preceding moments it cannot produce pain because pain is something alive, and, at that time, that is, after the beginning of death, man’s senses are moribund, which is like saying weakened in the extreme. It may well be a cause of pleasure, for pleasure is not always something alive; in fact, most human pleasures consist in some sort of langour, so that man’s senses are capable of pleasure even when they are near extinction since very often langour itself is pleasure, especially when it frees you from suffering; for, as you well know, the cessation of pain or discomfort is in itself pleasure. So, the langour of death ought to be the more welcome as it frees man from greater suffering…

Something to think about and explore...

For that Badass, Becca Babcock.

Last month I was perusing the blogs that I follow, and I was sad to realize that our Becca is gone. I say "our Becca" because she was a vocal (and super-awesome) young adult cancer blogger, who shared her journey and followed along as we shared ours. She was part of our collective voice, and she will always be, thanks to her writing.  I am extremely touched that her mother continues to post her journal entries, so that we may benefit from Becca's private insight. I have years and years of journal entries just like Becca's, and I would hope that my mom would do the same. I think our shared goal is always: I want to be of benefit. I want my life to mean something to someone.  I think that by sharing our deepest fears and pains, we can accomplish this in an especially intimate way.

I met the fiercely intelligent Becca in 2008 through Planet Cancer. She commented occasionally on this blog and she always had good advice. I guess it was as if she'd done 5 successive tours of duty-- she'd been at war for awhile, and she knew the ropes. We all exchange battle stories, but in the end it seems we still feel hopelessly alone. We fight alone. Nevertheless, there are things that Becca wrote, privately, that make me feel not-so-alone:

"You know what one of the most awful parts of cancer is? Knowledge.Of course, that is an odd statement, because at first I would be inclined to say that is one of the gifts of cancer. When trying to appease myself somehow with the thought of cancer and all that it entails, I would find a very small amount of comfort in certain knowledge that comes with diagnosis.That knowledge includes things such as: I KNOW the true meaning of the phrase 'Life is Short'."

[I often feel that I "know too much" for my own mental health, due to what cancer has taught me.]

"I think often how I don't think I'll be alive very long. not like I think I may keel over, say, tomorrow. but unless a miracle happens very very soon, I feel inevitably, I'll be defeated :(  (incidentally, it's now tomorrow & I didn't keel over...). I sometimes wonder why i can't just get it easy & fall asleep one night & just not wake up? I wonder if people that has happened to, if they could ever appreciate how lucky they are to have that happen. they not only have no idea that's coming, they don't have to spend time agonizing over unfinished business... they don't have to worry about the pain and suffering associated with a sudden violent death. I really envy those people. Anywho, I'm kinda just weary on life today. I can't wrap my mind around my life at this time. I don't seem able to find motivation in order to "care" about things. & in general...I'm just tired of people. normal people. they bother me without even trying or attempting to. oh, that, and it's back to cold.  BAH."

[link to Becca's amazingly articulate, literally bad-ass blog here]


I want to dedicate my life, somehow, to young adults with cancer-- there is nothing else I feel passionate about anymore. I've spent the last few months in an incredibly deep depression. It has been difficult coming to terms with life in the afterglow of cancer. It has left an indelible mark of uncertainty and finality upon my life. It has left physical and mental pain that has yet to resolve, and at times is overwhelming. I am still searching for a life after cancer. Turns out it doesn't just come to you naturally, like breathing, as one would expect. You really have to fight for stability and your own ideal future. You have to come to terms with the knowledge you've been given-- that pain endures, and death is imminently unknown, and therefore life is precious and bullshit is insufferable. Right now, that's what I'm working on. If I can get past those things, and stay healthy, I'll be golden.

I am unsure what role I will play in cancer advocacy, but I'd like it to be an ongoing goal. For now, Jon and I are continuing with our Cancer Comic. If things go as planned, we should have the entire graphic novel finished by September, just in time for the MTV documentary to air. We are adding some of my personal writing to the final publication, and I've been thinking about opening up a submissions process to allow fellow cancer writers and artists to be published. Thoughts? Anyone interested in submitting an essay or illustration to Terminally Illin? I feel that it could have a monumental effect on the future cancer community if it became a communal, collective effort... but I'm unsure of how to facilitate this.

I am also planning on being much more active here on CIH, because I've realized that my writing continues to positively effect people's lives. I want to say that I appreciate immensely the feedback that my readers give-- there are many visitors largely unknown to me that have been following my story for years, probably out of morbid curiosity, but also out of compassion and a genuine appreciation for human expression. People like me, people like Becca. People like you. Let's keep sharing, no matter what.

death is not the end of this song

it's been stuck in my head lately.

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.

when everything is connected

I've stumbled across the astonishing blog of Derek K. Miller, a tech writer from Canada who intimately chronicled his battle, and recent death, from stage 4 colorectal cancer. He was a mere 41.

I say astonishing because I find myself relating so closely to his insight, the way he adapts to his disease, his matter-of-fact logicality and humor. He was able to prepare for his own death, and even had a living wake- basically, one final chance to party it up. The last post on his blog was published posthumously a few weeks ago, a somber summation of his life and what its really like to die.

"I haven't gone to a better place, or a worse one. I haven't gone anyplace, because Derek doesn't exist anymore. As soon as my body stopped functioning, and the neurons in my brain ceased firing, I made a remarkable transformation: from a living organism to a corpse, like a flower or a mouse that didn't make it through a particularly frosty night. The evidence is clear that once I died, it was over."

I'm so grateful that Derek had the resolve to share his cancer with the world, with the infinite interwebs, with me.

It reminds me that this blog is important too, for just that reason.

So, some people are dying right now, and some are still fighting , but I am living. Really living, moving on, trying to forget the scarred past, the residual pain, the uncertain future. Filling my head with the scent of new summer rain on unexplored Brooklyn streets.

I can't forget it, but I can build on it. I will add new layers. I will stabilize my crumbling foundation like this old brick wall outside my window. Still standing, somehow.

I'm happy for every miserable second of my life.

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.

I'm so high maintenance

pain status: same as before, but now a lingering fatigue. I can sleep 14 hours and wake up tired. Also, my bones hurt. It feels exactly like the pain I got from Neupogen injections, like hot lava in your bones, burning and radiating out. It makes me restless, I want to stretch and shake the pain away. My fingertips are tingly. I yawn a lot. I've had a constant nausea for the last few days, which makes food unpalatable.

I've been having a tough time keeping up with life. This is a hard thing for a perfectionist to handle. Harder, harder, work harder to be normal. You must hide your physical pain, you've got to fight off your anxiety, you need to combat fatigue. Take your pills.

My collection due date is in exactly one month and one week.
work work work

My friend is dying slowly, but much faster than me. This is terrifying; to have a window into what will probably (50%) be your own unwanted fate. A flip of the coin. Every moment my mind is left to wonder, it wonders about death.

It crosses my mind frequently that this collection may be the last I ever design. So it's got to be good. It's got to be. perfect.

Anais Nin once wrote, "I postpone death by living, by suffering, by error, by risking, by giving, by losing".


I postpone death.

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.