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!

 

And sometimes fishing happens

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There are times at camp when someone might not want to surf. Or they just physically can’t. They may, however, be able to lay on a paddleboard and snorkel-fish!

This is what happened at our most recent camp. Santar didn’t have the strength to surf. He had recently undergone treatment, and weakness permeated through his body. This is quite common at camp, but Camp Koru offers activities that anyone can do, even while lying down. So that’s what Santar did.

While Santar pointed out fish from the surface on the paddleboard, one of our surf guides, Ola, swam and speared fish below. It was great teamwork and symmetry, and a beautiful celebration of connecting with the ocean. Santar brought fish back to camp and like a true local — we ate freshly caught fish over a fire.

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Attempting to scale and filet the little buggers.

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.

Ready! Fire! Aim! is sometimes what you have to do

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Ready! Fire! Aim!  Sometimes that’s just how you have to do it for the first time. No one’s done it before. There is no precedent. There are no books or google searches that give you the steps. No YouTube how-to videos.

Taking risks and breaking trail means you might hit some big rocks and unexpected challenges along the way.  Calculated intuition (that’s a thing, right?) helps. I like pickles and yogurt, not together. That helps with the gut, as in… what does your gut tell you? Mine is strong and speaks volumes. I follow it. I also listened to others’ guts. About 300 of them, in fact.

Sounds far from a scientific study on how to run a cancer survivorship retreat, huh? Yup, pretty much. This was the approach for our latest survivorship program, Ohana Mana, designed for cancer survivors who have attended our first survivor retreat, Camp Koru, and seeking a deeper experience that can help them find a great sense of purpose and accountability in all areas of life after cancer.

After running 18 camps of our first survivorship program, Camp Koru, we realized that many survivors needed something to help sustain and build upon the transformation that happened at that camp. Their lives after cancer were kick-started through Camp Koru, and they could use some additional long-term tools to keep that going. Our 300 + camp ambassadors spoke to us, their needs and feedback shaping a new program. There was no how-to for this new program, so we simply listened, and executed.

On September 24, we launched that first Ohana Mana retreat. We were open  with the participants from the beginning:

“This is a pilot retreat. It’s success, as much as your experience, rides on not only how much you put into it, but your input and feedback to help shape it. This is your opportunity to be a part of creating something amazing, long-lasting, and life-changing. Own it.”

This was the first task for the group as they started their journey of creating meaningful and purpose-driven experiences in life after losing that to their disease. When you empower people to take ownership and build something as a group, magic can happen. This was our approach to Ohana Mana. We’ll keep you in the loop as to how it unfolds, but so far, we’ve received great feedback.

There is a stigma in the non-profit world to focus only on what’s safe and working while avoiding risk to appease supporters. Running programs that return proven results is absolutely essential but sometimes you have to take risks to be innovative. And you have to be innovative in order to inspire change in the world. We want to inspire that change, with our supporters hand-in-hand in that success just like our survivors. Thank you for inspiring change in the world with us!

~ Tonia
Executive Director
Athletes 4 Cancer

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