‘We Are All Family.’

By Katie | Power Name: ‘Sisu’, Camp Koru 19

I was diagnosed at 27 with stage 3b invasive ductal carcinoma breast cancer. I now have Stage 4. It has spread to my bones.

I heard about A4C from my friend Allie. She had applied and told me I should to. It sounded like a lot of fun and to be with people who have experienced cancer as well. I thought, “Why not try it out?” I could make new friends and help heal some open wounds the cancer leaves on you—mind and body.

Katie QuoteI was pretty open minded going into camp. I didn’t really know what to expect. I was concerned about the minor things like showering and where we were going to sleep. I am not a camping type of girl! But I’d go back there in a heartbeat.

Camp Koru changed my life in many ways. I realized I am not the same woman who was diagnosed at age 27. I’m now a 32-year-old survivor with a different outlook on life. I try to appreciate today and hope for a better tomorrow.

When I got home from camp, I found out that my cancer was back and it had spread to the bones. I was still in such a great mind space that I think it helped to accept that news.

I now have about 16 new friends that I can reach out to at anytime, for anything. There are a few I talk to on the daily. I love my Ohana. We are all family. This experience was by far the best thing that came out of having cancer. Gives you a chance to heal your mind, body and soul while getting out there and facing your fears!

Camp Koru: More Than I Could Ever Imagine

By Becky White

I am a fiercely-independent single mother of three very active school-aged children.

Four years ago, at 37 years old, I was diagnosed with stage II breast cancer (December 2011) and in January 2012, discovered I am a BRCA1 carrier. Following my initial lumpectomy, I found out that the cancer had already spread to my lymph nodes, which meant I would need chemotherapy and prophylactic bilateral mastectomy, or a preventative mastectomy.

Unfortunately, one year later, the cancer spread to my bones and liver, changing my diagnosis to metastatic breast cancer, or stage IV. Metastatic cancer means that I will be on some kind of cancer treatment (mostly chemotherapies) for the remainder of my life. It sounds bleak, but I looked at this situation as a challenge and was determined to live past the statistics (average 2-3 year survival rate), and push myself to try new things.

That’s where Athletes 4 Cancer came into my life.
Becky White Quote
I had already run a 5k with my daughter, completed a mud obstacle course and hiked into the Grand Canyon. Learning to surf had never crossed my mind, but I have always loved watching surfers. A woman in my cancer support group had just returned from a similar camp. Hearing her energy and enthusiasm, I immediately applied for Camp Koru surf camp. Not only was I going to learn how to surf, but I was going to meet other people surviving cancer! I was excited and ready to jump in feet first!

Camp Koru was more than I could have ever imagined. In one week, I learned to surf, I made amazing friendships and worked with dedicated staff and volunteers! It was a time to relax and challenge myself—challenge my determination and will. We were there at that moment to challenge ourselves and support those who were going through the same situation.

I came home with a sense of hope, a sense of community or “Ohana” (meaning family) and a sense of pride.

Athletes 4 Cancer created a life-altering experience for me by fostering community and safe space to bond over a challenging and fun activity—surfing! I am still connected to Athletes 4 Cancer and the other campers and have created a strong, supportive network.

Athletes 4 Cancer is a vital organization to those who are living with cancer.

What’s just as hard as fighting cancer for young adults? Surviving cancer.

By Tonia Farman

It’s ironic that my younger brother, Scott, passed away of Leukemia nine years ago today on National Cancer Survivors Day. He was 19.

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What’s also ironic is that I’ve learned more about surviving cancer as a young adult after his death. That part has come through his legacy. What I know is this: Survivorship is just as hard as fighting the disease itself for young survivors.

There’s the depression, body insecurities, incurred debt, false appearance of health, infertility, fear of recurrence and a lost sense of purpose.

‘Surviving cancer’ is wracked with stigmas survivors can’t shake, and this assumption that once the remission party confetti is swept up and the extra cake is plastic-wrapped, everything in the survivor’s life goes back to “normal.”

That’s not even a little bit true.

For the approximately 70,000 young adults diagnosed with cancer each year in the United States, the truth is that they’re not the same person they were before cancer, and they face challenges that other survivors don’t.

Take dating for example. There’s a stigma attached to cancer that drapes over dating life. Do you just drop, “Hey, I had cancer.” on the first date?

That’s not easy to unload, and it’s not exactly light conversation. If that situation goes sour, imagine what that would do to a survivor’s self-confidence.

Or, consider the social challenges. Survivors get ghosted by their own friends because they feel uncomfortable talking about cancer.

The National Cancer Institute (NCI) says a “desire for normalcy” can keep AYAs, or adolescents and young adults, from sharing their cancer experience with heathy peers, which adds to their sense of isolation. That’s why NIH says follow up care to address the late effects and psychosocial needs is particularly important for young adults.

After treatment, young survivors return to a world that expects them to snap back into the mold, into their old selves and the life they once lived. Everyone’s like, “You’re healthy, you’re young. You’ll get back after cancer, no problem. You’ll beat this. You got this!’”

But it’s not that easy.

We harm survivors when we question why they don’t act or feel the same as they did before cancer because it creates a culture of shame. It shames them for feeling weak and ungrateful, even though they have every right to feel whatever they feel.

Our society’s adoption of this belief that young people—no matter the circumstance—are indestructible has led to a lack of resources to help young adult survivors sort through these feelings. Historically, young adults have been “left behind” by research and support from the medical community, forgotten between the pediatric and older adult treatment settings.

I know how this goes because as my brother struggled through chemotherapy and a short-lived remission, there were almost no resources out there that addressed his unique needs as a young survivor. He briefly returned to college at one point and felt this total disconnect among his friends. He had no interest in partying; he was like 18 going on 30 and burdened with sickness.

After Scott passed, I became determined to help young survivors heal in a way that the healthcare system alone couldn’t.

One of the ways Scott found solace during treatment was through the outdoors. In Scott’s honor, I founded Athletes 4 Cancer, a nonprofit that helps young adult survivors reclaim their lives after cancer through the community and connections made through outdoor adventures. We teach them how to surf, ski, snowboard or standup paddle, and it’s through overcoming this challenge with their “cancer body” that many survivors find a renewed sense of purpose, confidence and hope. More important is the camaraderie they find with other survivors and the healing power of accepting, and even feeling inspired by, their “new normal.”

This is my brother’s legacy, and I’m proud of it, but we can all do more to help young survivors accept their “new normal” after cancer.

  • Refrain from discussing your own personal struggles that aren’t relevant to cancer.
  • Offer to take them to do something completely out of routine.
  • Encourage the survivor to share what life been like since treatment. (“How are things different for you?”)
  • Respect their post-treatment struggles rather than discounting them.
  • Offer an ear to listen. Listen intently and be open-minded.

Let’s let go of our expectations for young survivors to be as they once were, and be there for them as they are now.

Help us spread the word about the challenges of young adult survivorship by sharing this article!

 

We Talk About Cancer, But We Can Still Make You Smile: Testimonials from Camp Koru

By: Tonia Farman

For each one of you who has ever given a dime to Athletes 4 Cancer, thank you. It has transformed lives. Here’s a quick reminder of what you’ve done. 

 I see your donations at work every time a survivor stands up on a surfboard with their post-cancer body; every time a survivor plucks up the courage to share their cancer story around the campfire; every time I read testimonials from Camp Koru alumni.

KORU_TKraftLeboe_AO0W2910-LRReading testimonials from our camps makes me smile, cry (with happiness) and laugh. I hope it will do the same for you. Here are some of the latest testimonials we’ve received from our 2015 camps:

I was feeling stuck in a rut after treatment. Going to Camp Koru tossed me out of that rut into the ocean! The supportive community that was around me helped me to relax deeply and challenge myself! I returned home feeling peaceful, invigorated, and loved. –Star

Everything about Camp Koru is beautiful. Beautiful Maui, the ocean, the surf, and the people who exude a beautiful, peaceful, positive healing environment for the campers. The best thing about Camp Koru is there’s no pressure. No pressure to share stories, until you’re ready, no pressure to surf if your body achy. As an introvert, I felt comfortable in my own skin from the minute I arrived. That doesn’t happen often. The staff is laid back, witty, and caring. The food is out-of-this-world. Life long friends were made, sleeping under the stars, on a beach in Maui. How much better can it get? Camp Koru was a time for me to heal, reflect, and finally move forward from my cancer diagnosis and treatment. –Mino

I met so many incredible cancer survivors and cancer survivors at Camp Koru.  Their friendship is what I value more than anything else. –Scuba

I made some lasting friendships, thrilled to the stunning natural beauty of Maui, got to surf and SUP and try some new things, and was surrounded by love and support and understanding for a full week. It was invigorating and rejuvenating, and it gave me strength to move forward. –Ripley

Koru was the positive force I needed to help me through treatment for triple negative breast cancer. As a surfer, I was crushed to be out of the water over a year and, though I barely had strength to stand up with lymphedema at 5 weeks post-surgery, having the help and support of the Koru Camp 6 Ohana fellow survivors was an essential step. –Koa

IMG_1176 (2)Thank you to all the donations, support, guidance counselors, and all those who helped make this trip become such a life-altering trip. I now have upwards of 20 new friends thanks to this camp. I would do anything for them and welcome them to my home as part of my family. –Renegade

I attended Camp Koru’s surf/SUP camp in Maui. What an amazing experience! It’s been a dream of mine to learn to surf and travel to Hawaii, and I never thought a cancer diagnosis was the thing that was going to bring me there. It was a truly unique experience to be able to live out this dream with other survivors who I was so inspired by. Since having this experience it has impacted my life by gaining strength and inspiration from other survivors to continue to live life to it’s fullest. –Flora

These words are proof that Athletes 4 Cancer is achieving what we set out to do: help survivors reclaim their life after cancer! We’re feeding souls and giving inspiration and healing. It’s truly incredible.

You can support us by making a donation here.

Putting My ‘Old Normal’ to Rest

Samm's latest haircut.
Samm’s latest haircut.

By: Samm Newton

After chemo, I had this conversation frequently with friends:

Friend: “Your hair is so curly.”

Me (In my head): “Yeah, it’s not supposed to be this curly. I fucking hate it! You know, I don’t know how to deal with this. It took me 25 years to learn how to deal with my own hair, and then now I have brand new hair that I don’t know how to deal with!”

It was just this thing that I was kind of angry about.

Because before cancer I was one way and now I am another.

I used to be able to do this and now I can’t.

I used to like certain things that now I don’t.

This new normal isn’t what I want, I want the old normal.

The younger me, before cancer changed my life forever.

My former hair.

My former self.

My former self is idealized by a wig that sits on a high shelf in my bathroom. It is composed of about two feet worth of long, brown, wavy, perfect, beautiful, synthetic hair. Almost two years after my own hair fell out, and with a solid set of new locks growing in, I still haven’t been quite able to part with it. What if I need it again?

So there it sits, startling plumbers, guests, and occasionally, even myself, floating on its faceless styrofoam pedestal. I had picked this specific wig because it most resembled my favorite hairstyle before diagnosis, and when I remember myself in my twenties this is the hair I remember.

But recent revelations have forced me to reevaluate both the person I remember and the one I am now.

Experiences such as Athletes 4 Cancer‘s Camp Koru, where I met other young cancer survivors, helped me realize that they too struggle with reconciling their old and new normals. This has helped me learn that comparing now to then is a roadblock to personal growth after trauma. I’m not the same, and I’m never going to be the same because, yes, cancer changes you. Really though, life changes you. It changes all of us.

Honestly, if I had to choose a wig again it’d probably be different. Shorter, curlier, more like my current hair. I’ve recently noticed that my hair has started to flatten out a bit, and I feel like it’s a sign to start a new chapter after cancer. That chapter begins like this: “I can embrace it. This is the new me. This is my new normal. This is my new life.”

How Cancer Camp Made Me a Better Artist

Written by Bri Sabin

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.

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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.

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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.

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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.

 

All About Hair

Brianna Barrett is one of five Camp Koru ambassadors contributing to the A4C blog sharing her experience about life and cancer.


I refused to shave my head for a preposterously long time. In fact, I refused to shave my hair until after my treatment was over. I was this scrawny, sickly-looking person with creepy long strands of hair over my mostly-bald head. I theorized that it was still enough hair that when I was wearing a beanie or something, it at least looked like I still had some hair (I was probably wrong about this). I often wore a wig, but sometimes wigs are itchy, and you still want to feel like you’re not bald!

Brianna-during-a-California-road-trip-two-months-after-treatment

The day before I was heading to Seattle to see one of my all-time favorite musicians in concert, my friend Ryan (who never saw me without a wig or hat before) insisted on seeing what my head looked like. Then, upon viewing my disturbingly mangy scalp, he marched me into his bathroom and shaved my head himself. Turns out, I looked way better completely bald than weird-creepy-almost bald.

Brianna-on-a-date-shortly-after-her-last-treatmentThe next day at the concert, I still wore my wig as I usually did in public. I’m not sure how it happened, though I suspect it had something to do with the fact that I was right next to the stage, but a group of girls at the show started to pick a fight with me. Alcohol-induced, I guess. They were really rude to me and trying to get me to leave.

I have always regretted that I didn’t pull off my wig for just a second to show them my bald head and freak them out. I could’ve said, “Leave me alone. I just beat cancer like two weeks ago and I’m celebrating.” That would have been awesome.

So if you’re reading this and you have cancer and you’re bald, I recommend using that vacant noggin to put rude strangers in their place as needed.

Brianna-catching-a-wave-in-HawaiiBrianna Barrett is a writer, filmmaker, and artist living in Portland, Oregon. Currently, she is directing a new play, 36 Perfectly Appropriate Mealtime Conversations, for the 2015 Fertile Ground festival and will donate $1 of all ticket sales to support fellow young adults cancer patients and survivors at OHSU. During treatment, Brianna also kept a video journal about her experience.