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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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.