Thursday, May 15, 2014


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

Monday, May 12, 2014

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.