how cancer camp made me a better artist

I have been a participant and a volunteer staff for cancer camp, and the experiences all have led to tangible personal growth for me. Much of that growth has been related to my self-confidence and the way I interact with others, but along with that has been my growth as an artist. Camp Koru offers an art table, where supplies are made available for open-ended artistic endeavors. It was at that art table I ended a four-year stretch of keeping my lifelong love of art at arm's length and started painting again. Last fall, I opted out of a traditional career path in order to pursue my love of making art. The following are some of the things I learned from my time so far with Athletes for Cancer that have made my art more daring, more engaging, and more satisfying to make:

The soul speaks many languages, many have no words at all. It's hard enough for most of us to fully express ourselves with words alone. When you add chemo brain to the mix, there are times it feels nearly impossible to talk about how we feel, what we have been through, what we hope for. Thankfully, there is a plethora of other ways to get it all out. Music, adventure sports, creative high fives, theatre, photography, pantomime,  dance, painting, sand sculptures, and on and on and on. When you put your soul into something, you find you are speaking clearly without having to speak at all.

Open up and be vulnerable. Let them see your scars. Port scars, shingles scars, surgical scars, all the places your spirit tore and was stitched back together or left to heal on its own over time. Announce when you are scared, when you are frustrated, when you are filled with joy. Push past all your hang-ups, all the boxes you live in, all the ways you guard yourself. Put your story on the table. Tell the gross stories, the strange stories, the bodily function stories, the loss stories, the giddy pleasure stories, the gallows humor stories. Let go of what other people think about your stories. Someone outside your inner circle may need to hear what you have to say.Offer something of yourself to others so you can make room for their stories.

Close your mouth and open your ears and eyes. You have lived and you have a lot to share, but the same is true of the world around you. Turn off your inner monologue, set your own stories aside, and pay attention to the stories being told. Connect with friends, strangers, the pulse of the city, the rhythm of the ocean, the opera of a storm, the whispers of the trees. Really hear what's being said. Take it in. Ask questions. Turn a conversation into a an interview for "Most Interesting Person in the World Magazine," with the other party being your cover story. The things you will learn and the connections you will make will be significant.

Embrace silence, quiet, and pregnant pauses. Prolonged silence can channel new pathways of creative thought; quiet can lead to clarity; pregnant pauses and awkward silence can say so much more than the words not being spoken. All are important to human connection and artistic endeavors, but our own anxieties, eagerness, or misunderstandings about communication can cause us to undervalue such moments. Likewise, the "empty" areas in a piece have as much to say as the places one fills with detail or line or color.

Take breaks. Stretch. Eat a snack, hydrate, and reapply. It's amazing to paddle out and catch waves over and over and over, and it can be wonderful to sit at the drawing table for nine hours at a time, but you need to be nice to your body or you will get hurt. No matter what you are doing, you will do it better if you stop every once in a while to stretch well, refuel with something healthy, drink lots of water, and put on more sunscreen. Okay, maybe sunscreen isn't necessary for painting indoors, but it doesn't hurt to use a stretch break to also sweep eraser crumbs off the desk, walk the dog, or wash the dishes. You will come back to it reinvigorated and ready for more.

Challenge yourself. Push through discomfort. Standing up on that first wave, pushing past the crux on a climb, talking about things you are used to choking down; all of these take strength of will and a little faith in yourself and those around you to get to the next level. Similarly, sticking to what I am already comfortable with artistically tends to yield unsatisfying results. Taking on the challenge of improving my technique or learning a new discipline may be more difficult, but the reward of finally getting the hang of something new is a rush of small victory endorphins and another set of vocabulary with which to communicate. It's okay to suck. You probably won't stand up on your first wave, but you can't get to headstands and tandem rides without trying until you nail it. Every painting won't be a masterpiece...in fact, maybe none of them will be. It doesn't matter. What matters is the trying, the little victories, the culmination of hard work and patience that leads to a breakthrough.

Art heals. Enough said.

on being fired and cleansed of some self-doubt.

The job fell out of the sky and into my lap. It seemed stupid to reject opportunity, and I am glad that I took it. I learned important things about my (gag) "new normal" as it is right now, about what I want for my existence right now. The job left as swiftly as it appeared, and after a few days of existential crisis dotted with pools of ennui I am relieved.

For certain people, that was a dream opportunity. A foot in the door at the most technologically-advanced stop-motion animation studio. Regardless of the endless low-rung grunt work, it is a good gig for the right person. Someone whose sights are set on a career in animation or film. The pay is good, the people are mostly awesome, the setting is regularly jaw-dropping thanks to the thick concentration of talent employed there. It's not my opportunity. Partly because I still have chemo brain moments where the synapses fire the wrong way and I don't remember if I am coming or going, or think I have done something just because it happened three previous days in a row. Partly because I don't care if I work in animation. Animation and film are the extended families of theatre, writing, and fine arts, but they are not the parts of the family where I belong. I like to design sets for the stage,  paint trees/skies/dreamy scenes, write short stories and poems/prose and letters. Yes, those things have a role in animation when there are puppets and massive set pieces at work, but my ambition is not to work for a studio, no matter how cool a job that might be. So when I was "asked to resign" to make room for someone who can get along with the corporate aspects of the place, who had ambitions to be an animator, I didn't take it personally.

I was hard on myself for a couple days, not for the rejection but because there was a time that I had enough drive and just the right amount of self-deprication to flagellate my spirit in order to be a rockstar at work. I had an incredible capacity for a wide spread of attention, a desire to be at the top of the heap, a brutal eye for detail. It hurts that some of these have softened or changed. The adjustments that have happened to my personality take time to recognize and embrace. I am constantly updating the list of what I can do and what I need to let go, and there is a lot to reconcile. I chased an opportunity because I swore I would say yes when opportunities appeared, but in doing so I had to let go of my resolution to live a full, satisfying, present life. So I am relieved to be let go.

There are ways in which I lead a blessed existence. Not the least of which is my intimate, reliable network of close friends and family. I was mortified and nervous telling people I had been canned, but a truly healing thing happened: I fell and was caught in a net of loving arms. I didn't want to tell them I had failed, but I did and was met with, "is it really failure? You tried something that sounded promising, and it wasn't a good fit. Breathe now and be kind to yourself." There have been hard whole years recently, harder than what a lot of people ever have to face and the people who love me most dearly have seen that and watched me creep away from cancer like a whisper, shoot into my new life like a cannon, and won't let me see this as a set-back if I don't also appreciate it as a nudge in a different direction.

"I'm sorry this happened, I'm sorry you're sad, but you are kickass and I know it won't stop you," said my mom.
"I'm proud of you for giving it a go, and I know you will find the right thing. Be easy on yourself," said my dad.
"Now you are free! Follow your heart!" Said a best friend.
"Take a beat. Don't rush into anything out of fear or frustration. Make art," said my love.
"All I want is to paint. All I want is to run into the woods and take photographs. All I want is time to write when my brain is most fertile," said me.

The next step is no grand thing, no demanding 9-5 or foodstuff job. The next step is to breathe and do what I set out to do at the start of summer: paint, draw, write, adventure. This life is ephemeral. This life is what I fought for, and not to be squandered feeling inadequate and impotent. The letdown of being fired lifts and the gift beneath is the chance to do exactly what I want to be doing. And so I have committed the rest of 2014 to writing and making art, exploring and adventuring, nurturing my relationships. My new life is mine again.

on surviving.

I have lunch breaks now. Lunch breaks, a commute, a time sheet, a department, a 401k, obligations, a workplace. I drive about a half hour to a suburb where there is a huge warehouse-type building full of people who collectively produce wonderful stop-motion features, and I am perched on the very lowest rung where things need to be cleaned, fixed, installed, stocked, and polished.

But perhaps I should rewind.

This summer was going to be all about wandering about outside. Being cooped up for multiple years was a struggle, was a prison. I just wanted to be where I belong with water, mountains, trees and sky. I wanted to slowly sort through the newness of my survivorship, assess where I wanted to head, reconnect all my disparate parts and ease into life on the other side of my time in stasis. Instead, a friend of my brother's suggested I take over the job he'd been promoted out of, and before I knew it I was being called in to interview. They must have liked something about me because here I am three months later, blogging on my lunch break.

Why has it taken so long to update? I have not stopped moving since Maui. Now that autumn is here, I find myself scaling back on the hyperactive pace with which I have been careening through my days and actually taking the time to reflect. 

Imagine you have spent three years in a dimly-lit room with very little exercise or stimulation. You have infrequent opportunities to interact with people outside a very small subset of those closest to you. You have a limited diet, and every so often you are in some way drugged, maimed, or poisoned. One day, the forces at play decide to back off and give you respite. You are slowly eased into basic tasks, and the poisoning et. al have been discontinued... but the lights are usually off or very low. As soon as you have regained enough strength to perform the basic tasks of survival and your body can function without intervention, you are pushed through a door at the end of a friendly enough hallway out into the open air. The simple daylight is blinding. Everything is louder, chaotic, feels more. You have to remember how to do all the things you took for granted before. You have to remember how to interact with people outside of the room. You grip fiercely to whatever hand will hold yours and wobble about, or run at full speed until you slam into a wall. Eventually, your eyes start to adjust and your legs get firm beneath you, but it takes time to feel like you are a whole unit that takes up space and deserves to be away from that room and is a dynamic presence in the rest of the world. There is a quiet, giddy power that starts to fill every small space between your organs and overloads your synapses. Maybe you start to shoot laser beams from your fingertips. Maybe you can stop time. Maybe you are bulletproof. The fear of being back in that room slowly is overshadowed by the euphoria of being away from it. You are hungry all the time; for every sensory experience, every challenge, every sweeping vista. But you find a number of blurry spots in your brain that don't always take to sharpening and sometimes you wave your arms about and forget that in all this space there are so many people and objects. That's when the euphoria dulls and you find yourself feeling overstimulated or confused. The road doesn't look right. The sky is an off color. Nothing has changed, but now you don't belong to any of it. It's time to stop, reassess, and figure out where to go from here.

This is me in the first year of surviving the cancers. I've had a bit of a hard time adjusting to working at the studio. I have to think five steps ahead all day, which is taxing when it's a rusty skill. I now have breaks mandated by HR, which has eased the stress of reworking lost synapses quite a bit. I am actively dating, which has been a weird experience as not only a cancer survivor but a woman in her 30's who hasn't dated in about four years or more. Dating has been an online freak parade and a couple of pleasant-but-meh dates with guys with whom I've been set up. There has been one lovely exception, one truly delightful interruption of a string of "I don't think I want to date if this is what I slog through," but I am not going to tell you about it right now because we just had date numero un and I am not keen to kill the mojo with the internet. I will tell you he's just so awesome I floated into work on a cloud chariot pulled by two dozen tiny birds this morning. But that's it. Everything else is none of your business because I don't know what's going to happen next and blabbing all over the internet about it with my typical semi-candid verbosity is just uncouth.

That is pretty much where I am at, folks. So much has happened over the summer that I would love to go on and on but here my lunch is coming to a close and I need to prep the weekly Friday Party. Until next time, well-wishers...

Impossible.

You are a young adult and you have cancer. You have cells in your body that have gone haywire, that are defective, that are going to kill you. You are going to have to have chemotherapy/surgery/radiation/a bone marrow transplant. You are going to feel worse than you have ever felt, pray to die, pray to live, lose relationships, have your career/family plans completely derailed. You will have to watch for a recurrence of your disease the rest of your life. You will have to deal with the physical and emotional ramifications of treatment the rest of your life. You will wonder how much is left of the rest of your life. You will feel isolated. You will fight quietly, trying to participate in as much as you can to spite this disease. You will fight loudly, crying and yelling, laughing in the face of cancer. You will develop stronger bonds with the people who stay close. You will have small victories that lead to bigger victories over your cancer. You will have setbacks. You will see your priorities lit like spotlights on a dark stage. You will learn to stand up for yourself, speak for yourself, trust yourself. You will get to know your body better than ever. You will know your mental happy place and how to live in the present. You will channel inner strength from a well that seems to have no end.

And if you are lucky, you will go to surf camp and you will meet impossible people.

I spent a week at Camp Koru, surf camp put on by Athletes for Cancer. A4C is a non-profit that provides surf- and snow camps for young adult cancer fighters, giving them a chance to meet other fighters, reconnect with the natural world, and feel like more than a patient. My week at camp changed my life. I came home confident to start this new life, no longer scared and lacking in self-confidence. I came home with a most powerful community in my heart.

Camp was a rustic cabin set-up at Oluwalu on Maui, right on the edge of a popular snorkeling reef.  I showed up nervous: would there be cliques I would have to navigate? Would my cancer journey be cancer-y enough? Would I have to (shudder) talk about my feelings? To my immense relief, I found myself in a tropical paradise surrounded by people I had been waiting to meet for years. Fighters, survivors, ass-kickers, kind hearts, warm smiles, gallows humorists. We spent all morning on the ocean and the afternoons snorkeling, relaxing, and taking trips into Lahaina or the little store up the road from camp. On my birthday, we paddled outrigger canoes and visited Paia. We ate every meal like royalty, thanks to the incredible talents of our volunteer chef... who just so happens to work at one of my favorite restaurants in Portland. In the evenings, we sat around a tiki torch campfire and talked about our lives.

This would have been a marvelous vacation on its own, but it was so much more than that. The staff was warm, welcoming, and fun. Most of them have been affected by their own cancer experience, or the cancer fight of a loved-one. My fellow participants - all of us women except one lucky guy - are the definition of strong. Strong-willed, strong-spirited, strong-hearted. We talked in the ocean, in the vans, at meals, on the beach, at campfire. We swapped war stories, jokes, love stories, and tales of heartbreak. We whooped in encouragement when someone caught a wave, we cried together when shit got real, we shared comfortable silences. All of us people who were given horrifying diagnoses, who refused to submit to tragedy, who insisted on being more than our diseases. I marveled all week at the people around me, who rolled their eyes at terms like "inspiring" despite the fact that every one of them is. We spent a week just being ourselves, fully and without being "the brave cancer survivor" of the group. I found myself talking about the things I can't name with my family and friends, and learning a ton from what other people shared with me. As the week went on, everyone pushed past their own obstacles. Everyone took care of one-another. Every one of us have been living with diseases that wanted to take our lives and our happiness, and every one of us are defiant. On our last day of surfing, I looked around at all my new friends in amazement. Here were people who would have died without treatment and walked through fire just in case it worked. People who understood like no one else the truth of their own mortality. People who were riding the ocean, laughing and cheering and spotting sea turtles. Impossible people. My ohana.

transitional post about reality

Why has it been so hard to write about my experience at Camp Koru?

I thought I didn't have the words, that I needed to process my experience before I could give it form. But you know me, I struggle trying not to be verbose. I thought I couldn't do it justice, that I didn't possess the voice or vocabulary to honor the place and the people. But I know the one thing I can do is write.

The fact is, I have been hanging on to every precious bit of that trip. Trying to describe it means analysis and definition, and for the time being I have enjoyed keeping it pure. I have enjoyed snippets of camp washing through my memory, and reliving it aloud puts it in the past and me in the present, and I haven't been ready for that. I came home to the half-unpacked apartment I had left, tired but happy. I tried to finish unpacking but kept having to nap. I went to a play, then out after with my friends and the cast, and I woke up barely able to rise. Was I hungover? I only had a beer and a whiskey, plenty of water. Maybe I was still recovering from my trip. I slept most of the day, dreaming of Maui and the ocean, missing the people I had met there.

The next evening, a spot I thought was an irritation from my bikini turned quickly into a prickly rash. I could feel it spreading. I thought it was typhus or some other tropical malady I had contracted when I unpacked my suitcase. I cried a little, called my family, got a ride to the ER. Four hours of waiting and watching a drunk college student's hand bleed three times through his bandages before they finally wheeled him back, I gave up and went home to sleep on an ice pack. My oncologist diagnosed shingles the following morning.

The post-camp glow is over. I am in bed with no appetite or energy, with the feeling that I was struck in the ribs with the broad side of a white-hot poker. This is the present, camp is the past, and now I can talk about it.

...in another post, so I don't taint it with my disgusting shingles problem.

fully-grown adult human becomes adult human again after years in limbo.

I have finally moved back to Portland. I have an apartment, a roommate, a gas bill. I get myself all the places I need to go. I have good blood counts and enough of an immune system to allow me to be a regular participant in life outside doctor's offices and carefully-orchestrated ferry rides and trips to the grocery. I do not hyperventilate when I see someone sneeze without covering their mouth, but I do still wipe the grocery cart handle down before I can touch it. I make sure I am taking my last couple medications. I make sure I eat. I exercise: I work out with my resistance bands and hand weights; I jog some; I hike; I surf again.

Unpacking has been difficult. I have three lives melding together in a shared apartment. There are scraps of my life before, including mementos, outdoor gear, a surprising number of CD's, and shoes. During-cancer life is full of clothes meant for someone reduced to skin hanging on a tiny frame, toiletries that were left behind and then packed into a storage unit, hair accouterments for long hair that hadn't yet fallen out, trinkets and tidbits that serve no purpose other than to remind me of a tragic romance. Unpacking has meant sifting through boxes and boxes and boxes, deciding what to hold on to and what to let go. So far, it's half of one and half of the other. Now that I am about 85% finished (aside from my books, whose bookcase broke when I moved out in November), I am becoming less tolerant of items that can't be thrown into a frame pack or trunk at a moment's notice, of those things that clutter my corners and don't move me forward.

I moved in at the end of April, but I went to surf camp for the first week of May. I only got half my unpacking done before I had to leave, and the emotional process was perhaps what I needed going into camp. It opened up a lot of things I had locked down in order to get through the transition from Cancer Patient to Regular Adult Human. I thought I wasn't ready to deal with any of what I still hadn't let go of, that the things that hung on needed to be suffocated. I heard, "you are so inspiring" and it made me want to start a bar fight. Not inspiring. Fawn-legged, lost, uncertain. I was far away from myself and stuck on the fact that the BMT had taken so much from me. But then I went to Camp Koru run by Athletes for Cancer and closed the book on feeling less-than. That is a whole other blog post.

Now I am back and chucking piles of waste out of my life. Bags of garbage, boxes of donation items, a steady stream of what I don' t need. Just in time for summer. Just in time for something new.

left it all at the top

My body is on a weird sleep schedule lately. The Ambien they put me on in Seattle has been perfect for the last six months or so when I wanted eight solid hours of sleep. The last few days have found me awake at 4:30 in the morning to use the bathroom, though. Then, of course, I am wide awake despite attempts to bury my face in my pillows and get my body in exactly the position it was in when I was asleep. If I know anything about me, I know this is a good time to write in this-here blog and free up some brain space.

New birthday is July 19th, so I have my long-term follow-up visit at SCCA scheduled for the week before then. I am actually excited to go to Seattle. July is a nice time to be there, and tests to see where I am on the righteous path of bodily healing are the same as the tests to determine my fitness for a bone marrow transplant, but the psychology is different. Everything about this year is different. I'm taking steps and leaps in the direction of my optimum health instead of bracing against the onslaught of surgery after surgery and the inevitable transplant. That is all behind me and I keep shedding the hang-ups of that experience like layers of clothes on a sprint to skinny-dip.

Angel's Rest was a good place for me to leave a lot of that behind. A few dear friends and I hiked the 5-mile up-and-back in the Columbia Gorge last Saturday. The hike is 2.5 miles up with a 1,500' elevation increase along the side of the Gorge that switchbacks through deep green forest and along exposed boulder falls. Every turn of direction opens a view of the Columbia River or Cooper Falls, and this time of year sprinkles much of the lower part of the trail with trillium blooms in white, pink, and purple. I have done this hike quite a few times, and I usually ascend without stopping until the half-way point amid one of the rock falls. We must have stopped three or four times on the way to the summit, which was mildly frustrating for me as a reminder that I am not yet where I want to be in my physical fitness; my friends are gracious and kind and helped me see that being up there was a major accomplishment in of itself. All the way up, I pushed myself to climb a little further than my comfort zone. It's always been my way, at least as an adult. I was a timid kid but as an adult I have found the only way to get what I want is to shrug past that initial discomfort to see what the limit really is. The more life I have, the less interested I am in coddling the little voice inside me that wants me to stay within the confines of what is easy and comfortable.

The last few years of surgeries and my transplant have forged that in me deeper: taking on more pain than I wanted so I could be stronger than a potential painkiller addiction; letting go of long-held, unhealthy, imbalanced relationships so I could increase my exposure to my own good nature and appreciation of the caring, brilliant people in my life; walking miles' worth of laps around the BMT ward to keep my muscles from atrophying; taking ballet to rebuild the muscles prednisone wasted by 25 percent; wading back into my hobbies a little at a time, even when my cognitive skills were impaired, because I was depressed without them. The pushing past where I was to get to where I am trying to go has led to a lot of growth, but it's also saddled me with some empty- and half-full baggage to drag around with me. It made the climb up harder, but I left a lot of it at the summit. I left the "Cancer Patient" identity on the bench at the top of Angel's Rest because despite my bi-weekly oncology check-ups, I'm not much of a patient anymore. Sure, I am on a few medications, but I am not the sickly thing I was before my marrow went into remission and my new immune system started destroying the HPV. I left "needing a caregiver" on the bench because I have taken every step to being an autonomous adult again and have the strength and faculties to take care of my own life again. I found an apartment and a roommate, I take Amtrak and Trimet with only a little bit of germ-related hyper-vigilance. I can cook again, read without getting tired after three pages, take crazy long walks for no reason again, knit complicated patterns, maintain a conversation. The last bit is actually still a little hard but not because my brain is healing from being poisoned; I haven't had much in the way of conversation for a while, and less in experiencing life outside my bedroom or a hospital or cancer clinic. It's a practice thing. I also have a hard time talking to attractive people, which is new for me and something I left most of on that bench. I have felt "undatable" for a while, even though that worry has been fairly irrelevant most of this time. I went through a needlessly dramatic break-up, gained a little belly pooch from the prednisone and all the sitting, part of my vulva was removed, and I've been largely mystified at how I am going to get back to being a contributing citizen of my community. The drama of the break-up is over, I exercise five days a week, I'm going back to school, and I know how to make the new landscape of my bikini area work for me. I left "undatable" on the bench. I won't take the leap from "datable" to "dating" until I am settled back in Portland completely ...and even then being able to feel things about people in that way is a new development in healing and will have to be reciprocal and not some surprising crush feelings that turn me into a big idiot dummy when I try to converse with the object of my interest. Nonetheless, I felt my mojo coming back on my way back down Angel's Rest.

The hike down was light and springy. My friends and I chatted happily and I felt all these hang-ups that have been waiting to molt flutter off my back. This time last year, I was in Seattle for my initial testing. I spent a week there before they decided I needed a right-side radical vulvectomy and sentinel node biopsy before I could have my transplant, in case vulvar cancer had metastasized. This time last year, I was a ball of anxiety over the unknown and the imminent, clouded by pain medicines and constantly worried about the balance between my health and my partner's declining ability to deal with everything happening. It was not a good place. Now I am getting back to my old life, a new life, a life with strength and hope and excitement about what is ahead. I am proud of how far I have come in this little bit of time, and thankful for everyone and everything that have contributed to my being here and being unstoppable.


This, like so many other blog posts I put up, is mostly a stream-of-late-night consciousness, so I am not going to bother editing it. I think one day I will actually go over all this brain dump and feels-baring and edit it with my personal journals (on paper!) and make a book out of this experience. I don't feel a distinct theme or thread when I look at it all now, save for my constant need to find homes for the ideas and thought fragments and images that crowd my brain. We'll see. I'd really like to make this into something real and whole.