A man standing on a beach in Hawaii looking out over the ocean with a surfboard next to him with lightning bolts on it

Project Koru: Remembering That Life Is More Than Just Bladder Cancer

In part one of this blog, I discussed my struggles getting to Maui and how anxiety tried to hold me back. Maui was the place I developed human connections, personal growth, and inspiration to get busy living with bladder cancer.

Coming up with my 'power name'

Before arriving in Maui, we were supposed to come up with a power name. A name that made us feel influential and vital every time we heard our power name. I decided on the power name "Lightning" because it made me feel strong, substantial, energetic, capable, and beautiful. Once I chose my power name, from that point on, everyone called me "Lightning." My first name could no longer be used while in Maui.

I felt my spirit starting to heal

Once I arrived at the camp, I was able to keep my anxiety at bay. I met my fellow campmates, who were all cancer survivors, thrivers, or face going back on treatment when they return home. Taking in the views of Maui's sunset was breathtaking. I could feel my spirit starting to be healed, and that night, there was beautiful lightning a reasonable distance out to sea, but we could still see the illumination. It felt like a sign that this is where I am supposed to be.

I was scared to give in after my recent surgery

After a beautiful and restful sleep, our O'hana (family) headed to the surf shop to get a lesson on surfing before jumping into the ocean. Now, I have bladder cancer and have not done anything this physical, so I was apprehensive and fearful. I have an incision from my sternum down to my belly button from a pretty recent surgery, and I have a port in my upper chest. On top of all that, I have a fear of water, not knowing what's underneath me.

Telling my anxiety to go away

This rush of anxiety kicks in; my mind starts telling me, "You have metastatic bladder cancer; you can't do this; you can't surf or get in the water." Many of my O'hana is encouraging me, telling me, "Lightning, you can do this." Hearing my power name said over and over helped me to tell my anxiety to go away - I am more powerful than fear.

I jumped on my surfboard

So, sure enough, I walked to the water with my surfboard, saying my prayers, of course. Once I got into the water, it felt refreshing; it reminded me that water is powerful, but today, as Lightning, I was going to be more powerful. I jumped on my surfboard as instructed. The waves were coming at me, making me fearful.

My camp counselor was by my side

As I started to paddle out to the surfers, one of the camp counselors paddled to me. She told me, "We are going to do this together." She stayed right by my side until I felt safe enough to venture on my own. I started to feel peaceful. I realized I wasn't alone; my O'hana had me all the way. Also, the beautiful sea turtles swimming around me just made the whole experience more charming.

I felt like I didn't have bladder cancer

I got in the surf line, and on my first day in the water in Maui, I was surfing! I was riding the waves! I couldn't believe it; I felt like I didn't have bladder cancer for once. It was, indeed, a magical moment in life for me. I, a bladder cancer patient who had fears of the water and doing something out of my ordinary routine, just surfed in Maui.

Taking in the beauty around me

Then it was time to try paddleboarding, which looked gentle and relaxing. I was able to get on a paddleboard and paddle, taking in the beauty of the water, the sky, the sea turtles swimming around me, the mountains, and my O'hana around me. The sea turtles were gentle and appeared as protectors as if they were there with you encouraging your journey.

Making connections with other cancer patients

Each night at camp, we gathered around a campfire and had discussions about our day, how we were feeling, how being on Maui made us feel, and our cancer journeys. It was an excellent and meaningful way to connect with other cancer patients. As cancer patients, we need those meaningful connections with other cancer patients who get us, who understand what we have been through and what we may be going through.

Finding the humor in our cancer journeys

I felt so comfortable by the end of the week with my O'hana. There was a talent show planned the last night. One thing I did with my bunkmate is told cancer jokes as our talent. We pulled this together in five or ten minutes, and I improvised most of my jokes as I was up there. It felt awesome to make people laugh and find humor in our cancer journeys. Often, we are so serious we forget laughter is the best healer.

I need to get busy living

I went to camp as one person, and I left camp as a renewed cancer thriver. As I reflected on all the things I accomplished, I realized I don't just have bladder cancer; I do have a life to live. I need to take my healing, growth, and personal connections, and get busy living.

Learn about Project Koru

If any of you readers would like to learn about Project Koru and the incredible work they do for cancer patients, visit www.projectkoru.org.

Editor’s Note: With heavy hearts, we regret to inform readers that on February 27, 2021, Curtis passed away from stage IV bladder cancer. Curtis’s advocacy efforts and writing continue to impact many. He will be deeply missed.

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