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.
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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.

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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.

Camp Koru Set A New Bar for How to Experience the Rest of My Life

By: Serenity Shanklin (“Redwood”)

On the eve of my 35th birthday, I had no idea that my world was about to be flipped upside down and shaken like a snow globe. All of the little things that I felt secure about were all out of place. Like anyone who is young and has a cancer diagnosis, I had instantly leapt out of the shelter of youth. I went from being 34 to 54 overnight.

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A few years later, after everything I’ve been through to survive, my illusions about life are gone and I’ve had no choice but to grow up. At first I was simply mortified about what had happened to my body after an extremely invasive and painful surgery that left me with large scars externally and a Frankenstein digestive system that made socializing over food embarrassing. I worried about what I would look like and who would want to date me. I was self-conscious about what I’d been through, my fatigue, and how I was perceived at work. Unfortunately, none of this was misplaced.

Although I was supported and loved by many people, I was judged at work and I lost some friendships. Eventually, I realized that the few people that really loved me and thought that I was awesome for being a cancer survivor were the only people that mattered. I accepted love from a man who is supportive instead of chasing after men that were unreliable. I was discriminated against at work for the last time and I had the guts stand up for myself. I’ve made some really wonderful changes in my life, just in case, life really is short, I’m finally living a life for me. I hate cancer, but this is pretty liberating.

Camp KoruSurviving cancer takes everything you have. At first, I was so exhausted that I had to evaluate the effort anything would take. For instance, if I washed my hair I would not be able to do much for the rest of the day. That way of thinking transcended into everyday life, friendships, work, and activities. Lots of things that I used to enjoy just didn’t make the cut anymore and I couldn’t afford to feel apologetic about it. I had to do things that had a big payback if I was going to do them at all.

So, after my gastric surgery, I decided to do something I never would have done before. I signed up to fly really far away from home by myself, and go hang out with a bunch of complete strangers on surf boards [Camp Koru] in Maui. This gave me something to look forward to as I healed from my surgery, and it motivated me to get stronger so I could do it. I met witty and creative survivors. We had the opportunity to learn about the healing strength of the ocean at Surf Club Maui. We chased after sea turtles on paddle boards, held impromptu photo shoots on the beach, ate shave ice, and slept under the stars. I made a best friend. I felt empowered and gained a new sense of hope. The experience at Camp Koru continues to inspire me and set a new bar for how I want to experience the rest of my life. Taking risks on things that make you happy is what life is all about.

A4C’s Funding Goes Straight to Our Mission

By: Tonia Farman

A few weeks ago, the Federal Trade Commission, all 50 states and the District of Columbia accused four cancer charities of scamming donors out of hundreds of millions of dollars. It saddened us to see the generosity of donors abused and the field of cancer nonprofits smudged. It angered us to see survivorship mocked by the very existence of these scams. That’s why we just want to take this opportunity to say: Athletes 4 Cancer (A4C) is an authentic and full-time nonprofit serving cancer survivors every day, making real, positive change in their lives.

We know every scar, every strand of hair loss to chemo, every sharp, shooting pain and every tear among our campers is real, and we would never take advantage of that. All of the funds raised for A4C goes straight to our mission of helping young cancer survivors reclaim their lives after cancer through outdoor adventures. HopeTransparency builds trust, and we want every one of our donors to know that their donations give energy, love and new life to many survivors who are at a tough place in their life. Here’s what your dollars have done through Athletes 4 Cancer since it’s beginning:

  • 306 cancer survivors directly-served, having learned life-transforming techniques to move forward after cancer
  • 1530 friends and family of survivors served through our Circle of Influence impact, in which the lives of those closest to our cancer survivors have been positively impacted by the services we provide
  • 18 outdoor retreats & ambassador connector events
  • Achieved through 1 full-time employee, 2 part-time employees and a volunteer staff of 75

But “results” can’t always be so tangibly measured. Sometimes, it’s the beauty of transformation that reflects the real impact of donations. A4C campers’ testimonials express that transformation.

“Camp Koru changed my life. Only a year out from treatments I didn’t realize how broken I was. The last thing I wanted to do was be with a group of cancerites. Little did I know the best thing I ever did was be with a group of cancerites! I felt like it was ok to be my true self, a side I hadn’t shown in years. The staff and other campers truly helped the transformation from cancer victim to cancer survivor.” –Kiko “Camp Koru…it’s good for the Soul.” –Vida “Camp Koru is the most positive thing that could have ever happened to me. The lessons I learned far exceeded how to surf and paddle. It taught me my strength both physically and mentally. It allowed me to form an amazing bond with others around the world who get it. I learned to get busy living! Koru energized my mind, body and soul. I gained more than just friends, I gained a family, memories and the knowledge that although I had cancer, it doesn’t have me.” –Dragon   

These are the stories that hit home, that show A4C is using our funding (responsibly!) to change lives. We’ll keep sharing them with donors so they know how their dollars help young cancer survivors. If you’re interested in sending a survivor to Camp Koru, check out our Alive365! Campaign or email us at survivorship@athletes4cancer.org.

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.

 

The faces that kissed cancer goodbye

Yesterday was World Cancer Day –  a day we fully embraced here at Athletes 4 Cancer with images of our Camp Koru survivor ambassadors “kissing cancer goodbye.” These beautiful faces have gone through some serious physical and psychological challenges in their young lives. Some are still battling the disease and fighting for their lives. All of them are seeking or have found a new normal after cancer. Life is never the same, but you move forward.

This is the face of cancer. 

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FACES, from left to right, top to bottom : D’Lontae, Virginia; Brianne, Oregon; Jessica, New Jersey; Chelsea, Oregon; Arieana, Boston; Christina, Oregon; Lakin, Oregon; Elise, Ottawa Canada; Rhonda, Maryland.
Athletes for Cancer's Camp Koru survivors kissing cancer goodbye on World Cancer Day
More FACES: Kelley, Oregon; Lauren, New Jersey; Molly, Minnesota; Nina, Seattle; Leah, Oregon; Marnie, Oregon; Michelle, Montana; Michael, Oregon; Kristina, Maryland
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And more FACES: Brianna, Oregon; Olga, Somewhere cold; Trish, Washington DC; Rachael, Pennsylvania; Yvonne, Oregon; Rachael, Oregon; Rhonda, Maryland; Sheryl, Seattle; Steve, Oregon

World Cancer Day was started by the Union for International Cancer Control to promote a positive and proactive approach to the fight against cancer, highlighting that solutions do exist across the continuum of cancer, and that they are within our reach.

I really like their positive and proactive approach to eliminating cancer globally. Their basic points of focus should be something we all strive toward:

  • Choosing healthy lives
  • Delivering early detection
  • Achieving treatment for all
  • Maximizing quality of life

Seems simple enough, right?