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.

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’re seeking board members who care about cancer survivorship

Are you passionate about helping young adults affected by cancer renew life and thrive after cancer? Do you have professional talents that can help our organization?
Athletes 4 Cancer is seeking individuals who are passionate about our mission and willing to harness their skills & talents to help on our advisory board and board of directors. We are seeking board assistance in each of these areas: legal, fundraising, executive leadership, marketing, and recruiting.
We think a little of your time can go a long way in helping our organization. Here’s what we ask of our board members – check out ‘Commitments’ below. Want to get involved or apply?
Commitments:
  • Attend 4 board meetings / year, ideally 2 in person and 2 via phone or video: February, May, August, November
  • Financial donation of $500 annually or 50 volunteer hours / year
  • Complete Board of Directors questionnaire
  • Be passionate about cancer survivorship and our mission:
    Athletes 4 Cancer helps cancer survivors find healing and empowerment through movement and connection.

Please email Tonia @ athletes4cancer.org with questions or apply. Thank you for your interest!

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.

“Kiteboarding Brought Me Back to Life in Every Way Possible”

By: Brianna Hirsch

Chance often plays an all too important role in life. It was chance—and the generosity of a total stranger—that brought me to Kiteboarding 4 Cancer.

One evening last summer, I was kiting near my home in North Carolina when I crashed. My kite deflated, and I had to be pulled onto shore by a friend. He happened to know the woman sitting at the dock we landed on and she kindly invited us in to warm up. After talking with her for hours, I began to share my cancer experience with her.

I am the fourth generation in my family to be diagnosed with cancer. On April 10, 2011, ten years to the day of my mother’s diagnosis, I got a taste of just how precious life is. I was having my junior prom dress fitted and suddenly passed out. Hours later, I learned I had a massive tumor sitting on my heart, filling up my whole chest and crushing everything between my heart and my throat. Had I not passed out, the tumor would have crushed my trachea in another day or two.

My world turned upside down and came to a grinding halt.

The next day, doctors pulled a quart of fluid from my heart and told me I had cancer: Non-Hodgkin Lymphoma.

The next two years were very long, as I underwent various courses of chemotherapy, antibiotics, steroids, hair loss, spinal taps, blood transfusions, bone marrow extracts, pneumonia, collapsed lungs, and other physical complications and breakdowns.

Brianna KiteboardingThen I discovered kiteboarding.

To my and my family’s complete and utter surprise, the Make-A-Wish Foundation contacted me about, well, “making a wish.”

It was on a 10-day Make-A-Wish trip to Greece that I happened upon an ad for a kiteboarding school. I had never even heard of the sport, yet I instantly knew I wanted to do it. For the next seven days, I took lessons in the crystal blue waters of the Aegean Sea.  The moment I got up on the board, I knew this sport was something I wanted to do for the rest of my life.

Kiteboarding brought me back to life in every way possible.

It gave me the feeling of being in entire control of my body. To go from no power during cancer to suddenly full power over my body was the most thrilling experience for me. Never before had I realized this potential.

KiteboardingWhen I heard about Athletes 4 Cancer’s Kiteboarding 4 Cancer, I knew I had to be there. My passion, cancer experience and desire to help other survivors come together in this one incredibly inspiring event. That’s why I had such a desire to go last summer when I crashed my kite.

That women that invited me in to warm up, the one I talked with for hours, she was so moved by my story that she instantly offered to help me get to Kiteboarding 4 Cancer. Her generosity gave me the opportunity to participate in an event that has changed my life, and I can’t wait to get back for a second year.

To learn more about Kiteboarding 4 Cancer, or to donate, click here.

Camp Koru Gave Me Back my Long-lost Belly Laugh

Kelly and Tonia, Athletes 4 Cancer's Executive Director, smile for the camera after Kelly finishes her big run.
Kelly and Tonia, Athletes 4 Cancer’s Executive Director, smile for the camera after Kelly finishes her big run.

By: Kelly, power name “Zephyr”

When I was declared cancer-free, my worries and fears didn’t magically go away. While my friends and family were celebrating that I was finished with cancer and getting back to ‘regular’ life by working again, I felt more alone than ever.

Gone were the days of hosting epic St. Patty’s Day parties. (I didn’t invite close friends over for dinner anymore.) Gone were the days of laughing out loud with co-workers at the lunch table. (I ate alone at my desk.) Gone were the days of happy hours with friends. (I didn’t even reach out to the amazing people who supported me through my treatment.)

I had endured stage 2B IDC breast cancer at the age of 36: four months of chemotherapy, a double mastectomy, dozens of medications, hormone treatment, radioactive scans, uncontrollable pain and lots of side effects.

Those things were behind me, yet still with me. I was dark and miserable and lost and fearful. I didn’t know who the real Kelly was, and I wasn’t sure I wanted to.

These feelings were with me as I entered the lodging facility for Camp Koru Snow in March 2014.

Trying a new sport with a new body was intimidating. I was frustrated. I cried. I wanted to quit many times. But one day, it finally clicked. Nalu, a camp counselor, noticed I was having trouble with my turns on the bunny hill. “Just curl your toes!” she shouted. I tried it, and it worked! From there, it was smooth sailing—at least on the bunny hill.

On my final day, I tried the real run. I was terrified of this uncharted territory. People were zooming by and I was getting pissed off and intimidated. Nalu coached me along the way. At some point, I lost control and started down a black diamond route. “Heels! Heels! Heels!” shouted Nalu, encouraging me to stop.

Nalu pulled me back out of the abyss and back onto the easy run. My legs were tired, and I needed to stop a few times. But the next thing I knew, I was at the bottom of the hill and the feeling of celebratory accomplishment and pride overwhelmed me to the point of tears. “I can’t believe I did it!” I remember crying to Nalu. “Thank you so much. This is an amazing moment.”

After a week with the camp staff and fellow young survivors—supporting each other on the slopes, connecting individually, laughing over meals and sharing in our nightly circle—I found a new family. I discovered strength, hope, confidence and courage I thought was lost. I was even reacquainted with my long-lost belly laugh.

Most importantly, I started to feel like Kelly again. My Camp Koru experience gave me the push to take the next step in a post-cancer life, and I will be forever grateful to those who gave me this opportunity.

[Editor’s Note: Kelly is fundraising to send another young survivor to Camp Koru through our Alive365! Campaign. Help her here!]

What could be better for healing for a cancer survivor than surfing, music, art?

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Changing Fate partners with Athletes 4 Cancer to put ukuleles in the hands of Camp Koru participants for healing through musical art.

CHNGNF8.org, or “Changing Fate”, is a nonprofit organization whose sole purpose is dedicated to providing cancer survivors and their caregivers free access to the tools they need to communicate what it means to survive, through art. Athletes 4 Cancer inspires life renewal through the healing powers of outdoor adventure in the ocean and the mountains. Together, the two organizations are uniting their gifts of survivor empowerment to impact 60 young lives at Athletes 4 Cancer’s Camp Koru in Maui, Hawaii, starting next week.

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Changing Fate reached out to Athletes 4 Cancer with their 1,000 Ukes of Light campaign, which seeks to put a ukulele in the hands of cancer survivors and their caregivers, as a means to promote wellness, healing, and self-expression. Recognizing that surfing and ukuleles go hand-in-hand, Changing Fate found Athletes 4 Cancer’s Camp Koru Surf & SUP Camp for Cancer Survivors to be the perfect home for ukuleles to help change lives.

Changing Fate donated 30 ukuleles to Athletes 4 Cancer’s Spring camp program, and hopes to donate 30 more to their Fall camp program.

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Tracy E. Thomas, CEO and founder of Changing Fate explains –

“These small, simple, and easy to learn instruments give the user the ability to transform themselves from victim to Survival Artist. Once those in need receive their gift of healing, we reach out to them again by providing quality knowledge, instruction, and guidance in how to play their new instrument, provided by professionals in the field.”

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Thomas is a cancer survivor himself and is lead guitarist and vocalist for the group. Whether drawing, painting, doodling, filming, screaming, pounding or strumming, Changing Fate wants to help survivors make that happen as a means to communicate their story to the world at large.

Athletes 4 Cancer runs six Camp Koru sessions each year for cancer survivors, funded solely by individual, corporate and private donations. Adventures range from surfing and paddling in Hawaii, to skiing, snowboarding and yoga in Oregon. For more information, check out athletes4cancer.org and CHNGNF8.org.

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