Kiteboard 4 Cancer is another tool I use to define my fight with cancer

My name is Igor Alvarez, and I am a kiteboarder and a cancer survivor.

I was just beginning my first semester of P.A. school at MUSC in Charleston, SC when I was diagnosed with Stage 2 testicular cancer. For some reason, my diagnosis was not a shock to me. I was given the option to drop out of school with a guarantee that I would be able to join the upcoming class. For multiple reasons, I continued to attend school full time, scheduling my chemotherapy and surgeries around my classes. During my treatments and hospital stays, I had the honor of meeting others with the cancer diagnosis. These brave woman, children, and men continued on with their daily lives and did not let their situation stop them. So, neither did I and in September of 2014, I graduated with my class.12A570C0-1568-45A5-B2F1-96160B2D6C5A

In the fall of 2013, I had completed chemo and was recovering from a long complicated abdominal surgery when I found out about a new Kiteboarding movie that was premiering in a few weeks. I was stoked to go see the Charleston premiere of With A Kite; to be honest I was not a huge fan of the movie, but it did introduce me to Athletes 4 Cancer (now called Project Koru) and I was immediately interested in the organization. I spent some time looking up what Kiteboarding 4 Cancer and Camp Koru were all about. I quickly decided that I would get involved with the organization with the goal to kite in the following year’s event. Although at the time, I had been a kiteboarder for a few years, between work, school, and no wind, I knew I did not have the skill to compete in the competition. I vowed to myself that I would be well; and a good enough kiteboarder to participate in the next year’s event.

The following year, I registered for the 2014 Kiteboarding 4 Cancer and that July I flew out to the Pacific Northwest to see some great friends and to participate in the my first Kiteboarding event. My first stop was Tacoma, Washington to meet with a good friend who had lost his wife to cancer just earlier that year. I then took the train into Portland to meet up with my best friend. We spent the next two days mountain biking some of the many trails Hood River has to offer. Being in the outdoors and getting to a “normal” routine was instrumental to my recovery.

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Prior to being diagnosed, I had organized 3 teams of my fellow PA students to compete in the Marine Corp Mud Run in Colombia, SC. My first surgery was on a Friday 8 days prior to the event. I had the surgery on Friday, went back to school on Monday. The following Saturday with the help of several tubes of Dermabond (medical grade crazy glue) 14 of my classmate plus me completed the course with reputable times.

Anyway, I digress; here I was at the event site for my first ever Kiteboarding competition and it still did not sink in that I was riding in it. I was stoked to just be there, but it was mind blowing to be a part of it. The day before the event, as I was volunteering at the event site, I met my future teammate Brianna Hirsch; it was not until later that I discovered she was the survivor featured in the movie. Brianna introduced me to Steve Fisher (“the lefty to my righty”), and James Erjavec. They adopted me into their team and we became Two Ballers and Two Lymphomas.

2114977F-F7C3-4B19-B8E4-C875C9B78506Since that year, I have come back to Hood River to participate in Kiteboarding 4 Cancer each year. This November, I look forward to being a camper at Camp Koru; with the ultimate goal of becoming a camp counselor. KB4C is another tool I use to define my fight with cancer. Assigning purposes to my cancer experience has helped heal me and has made me a better person and practitioner. These tools give me the ability to turn my experience into something positive and empowering not only for myself, but for so many other cancer survivors, those fighting other medical battles, family members, and the patients I have the honor of treating in my practice.

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Riding waves is riding life

~ Tonia Farman, aka “Nalu”
Executive Director, Athletes 4 Cancer

Surfing is more than just standing up and riding that surfboard. You are riding life.

Life is just a series of waves — sets, really — that come and go, all the time. There are peaks and troughs, some big, some small; some exhilarating, some intimidating.

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You can choose to face the wave or turn your back to it, but some wise one once said  “never turn your back to the ocean.” It’s true. Once you turn your back to it, you fail to see what’s coming and are unprepared for the fallout ahead. I have learned that the hard way so many times in surfing. That said, there is one common ripple in all waves that serves as a metaphor for life: How you react can determine your outcome.

Learning to face those waves can be physically and emotionally daunting. Ripples of fear and anxiety permeate through the body. The heart races, the mind takes over and you’re faced with a decision to be made in seconds….

Do I paddle over it and pass it by?

Do I turn a blind eye and hope everything will just work out?

Or do I turn and paddle with all my might and intention to pull up, get up and ride the energy moving below me.

This is life. 

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People sometimes ask me how surfing helps people who have been through traumatic cancer battles.  I’ve heard… “it sounds like summer camp,” or “surviving cancer doesn’t sound so bad!” Let me tell you.

When I watch anxiety take over a participant at Camp Koru, sitting on that board in the water — someone who has lost all confidence in their body to function, let alone provide any strength to paddle — then see them choose to give everything they have to get up on that wave and ride it, experiencing physically moving forward under moving water… and when it’s over they break down in tears of joy, struggle, empowerment, disbelief… then belief. Belief that they did it. Belief that they can do it.

This is what the ocean teaches at camp.  It’s one of the most beautiful and powerful lessons from Mother Nature.

I am continually inspired by what happens at camp. I hear the struggles these young people have gone through to get here — we’ve had women in their 20s who have lost their ability to have children, sarcoma survivors who are learning to walk and run again after losing a leg to cancer, leukemia survivors recovering from bone marrow transplant complications and breast cancer survivors who firmly attest that this is not a “good cancer”, and so many more. Every cancer and story is different with each individual facing unique challenges. Their experience on the water is as personal as their experience with cancer.

The best part, however, is that when camp participants come off the water, they have others to connect with about what they are going through. They are not alone. They have a community of peers that understand, empathize, and high-five! There is a sense of normalcy found in shared struggle and community is the product.

The community created at camp from the surf experience is unparalleled to anything most of these young survivors have at home. So when they do go back home to the waves of life, they do so with a lineup of peers cheering them on, supporting them through the peaks and troughs of life.

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Matt Scott Joins Athletes 4 Cancer Board of Directors

Athletes 4 Cancer welcomes Matt Scott to its Board of Directors. Matt is Cofounder and Chief Development Officer of CauseMic, a cause marketing firm that helps nonprofits develop and execute their digital marketing and fundraising strategies.

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Matt and team raising buckets of bills at Kiteboard 4 Cancer

As a long-time supporter of Athletes 4 Cancer, an Oregonian and an experienced leader in the nonprofit space, Matt brings a passion for helping Athletes 4 Cancer grow its brand awareness and diversify its funding sources to achieve programmatic growth.

We asked Matt a few questions so our supporters could get to know him.

What excites you most about Athletes 4 Cancer?

Athletes 4 Cancer is entering an exciting growth period, and I love the thrill of contributing to a growing organization. With 28 camps completed and a half a dozen programs, there is a huge opportunity to leverage the lessons learned over the past decade to expand the reach of the organization. There are hundreds of thousands of young survivors looking for renewal through Athletes 4 Cancer’s programs, and I believe that Athletes 4 Cancer’s staff, volunteers and donors are fired up to expand the impact we have on young survivors. That’s pretty motivating.

What drew you to the nonprofit space?

While an undergraduate at Loyola Marymount University, I fell in love with the fulfillment that came from being a part of a mission-driven team. As my career in marketing and technology began to take shape, I looked for opportunities to fuse my passion for business with the needs of my community. One thing led to another and it became clear to me that I had more to gain and contribute from devoting my life’s work to nonprofits than other options before me.

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Strategy meetings with Matt and A4C ED Tonia at a local Gorge winery.

What’s your fondest memory at Athletes 4 Cancer?

Being a part of the tenth annual Kiteboard 4 Cancer is certainly near the top of my list. It was thrilling to watch survivor after survivor be removed from the waitlist to attend camp throughout our record setting campaign. But if I had to choose, I’d say the early morning weekend strategy calls with Tonia and Mindy are among my favorite moments. There’s just something awesome about collaborating with passionate and talented people when the outcome is so meaningful.  

Snow or Surf camp?

Definitely surf camp! Though not the best swimmer, there’s something about Mt. Hood staring you down with a cold grin that makes me shiver in my boots.

 

‘We Are All Family.’

By Katie | Power Name: ‘Sisu’, Camp Koru 19

I was diagnosed at 27 with stage 3b invasive ductal carcinoma breast cancer. I now have Stage 4. It has spread to my bones.

I heard about A4C from my friend Allie. She had applied and told me I should to. It sounded like a lot of fun and to be with people who have experienced cancer as well. I thought, “Why not try it out?” I could make new friends and help heal some open wounds the cancer leaves on you—mind and body.

Katie QuoteI was pretty open minded going into camp. I didn’t really know what to expect. I was concerned about the minor things like showering and where we were going to sleep. I am not a camping type of girl! But I’d go back there in a heartbeat.

Camp Koru changed my life in many ways. I realized I am not the same woman who was diagnosed at age 27. I’m now a 32-year-old survivor with a different outlook on life. I try to appreciate today and hope for a better tomorrow.

When I got home from camp, I found out that my cancer was back and it had spread to the bones. I was still in such a great mind space that I think it helped to accept that news.

I now have about 16 new friends that I can reach out to at anytime, for anything. There are a few I talk to on the daily. I love my Ohana. We are all family. This experience was by far the best thing that came out of having cancer. Gives you a chance to heal your mind, body and soul while getting out there and facing your fears!

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.

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