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.

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.

Serenity

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.

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.”

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!]