Ohana

A cool breeze rifles my hair from the hammock under the vanilla tree just steps from the aqua blue waters of the Pacific ocean off the coast of Maui. A week ago I arrived as a newcomer to this island, and a stranger to the fourteen other cancer survivors who shared this special place with me. Now we, as well as the staff and other teachers we have had the good fortune to interact with this week are ohana – “family” in Hawaiian.

This incredible experience was provided to us through an organization called Athletes for Cancer whose mission is to enrich lives impacted by cancer through the healing power of the elements and the tenacity of the human spirit. They fulfill that mission with surfing, stand up paddle boarding and snowboarding camps for cancer survivors in Hawaii and Hood River, Oregon. Camp Koru is healing in so many ways. At the outset, just the connection with the incredible beauty of this place and its natural wonders: the water, fragrant flowering plants and the towering volcanic peaks provide a sense of peace not readily available in the fast-pace of the mainland.

For some, just being in the ocean was a new experience that required them to overcome a fear of the unknown. For others, sharing their story for the first time with other survivors was an opportunity to connect with those who have been there. Putting words to an experience that engenders such turbulent emotions is not always easy, but definitely feels safer with someone who has walked a mile in your shoes. With our scars, buckets of meds and all their assorted side effects, sometimes unusual diets, prosthetic and missing parts, not to mention the emotional impacts of facing your own mortality, we can sometimes feel like misfits among the general population. But here, we are just like everyone else, or even realize perhaps that we didn’t have it so bad, after all.

As it is National Young Adult Cancer Awareness Week (April 1-7) it is appropriate to reflect on how far we've come. Thirty, or even twenty, years ago, there were no services for young adults with cancer, and probably most oncologists wouldn't even recognize that young adults got cancer at all. Now, there are a number of programs, camps and other services for those of us diagnosed between the ages of 18 and 40.

The natural world has always been healing for me, the water especially. Just hearing the waves lapping against the shore as I drifted to sleep at night soothed my soul. Returning to camp each evening after surfing and paddling all morning and hiking or exploring coastal towns in the afternoon with aching muscles and a kind of satisfying weariness made sleep welcome and easy despite less than luxurious, though completely adequate, accommodations. The food, however, was world-class. As someone with a really healthy diet, I always give a fairly significant amount of thought to what and where I’m going to eat. It was so great to have incredible, gluten-free, veggie-laden meals with vegan options prepared for us each day by an amazing chef who volunteers his services for the camps.

Excited to paddle an outrigger canoe, I had no idea how much the blessing and Hawaiian ceremony conducted by a native before and after our paddle would impact me. With tears streaming down my face, I listened to the prayers in wonder even though I didn’t fully understand their meaning. Kimokeo’s presence alone was so powerful, and his chants, songs and blessings filled me with hope and peace.

I came to Hawaii to rest, and to learn to trust. We were each tasked with choosing a power name for ourselves during camp, and I choose Kale`le`, which means “to have faith” in Hawaiian. At the beginning of the year, I left my job of five years with a nonprofit I founded in order to serve single cancer survivors. Even though I have accepted the fact that I am a “starter,” it is still scary to take the risk to start something new, again. A six-month consulting gig ends in June, and I don’t know where my income will come from after that or how much it will be or what my work will look like.

An intuitive told me once that I was like a dolphin (an animal I have strongly identified with) confident that there would always be more fish. I haven’t quite been able to embrace that philosophy yet as fear of having enough money and being able to pay for my health insurance is ever present. Coupled with that is the fact that I am currently in the middle of a recurrence of ovarian cancer with six masses in my abdomen that aren’t causing any problems yet, but could at any time, requiring surgery. It definitely requires all my trust and faith that things will work out, that I will land on my feet, that I will have the opportunity to make a difference and serve single survivors while supporting myself in the process.

Kalele.

Survivorship

Survivorship is a relatively new term in our collective vocabulary. It represents both a positive direction in medical advancements, and at the same time, a host of new long-term impacts from traditional cancer treatments as people are living longer with the disease. My friend Matt just published a great article about this on the Huffington Post.

Many people are confused about what to call themselves or others when they are diagnosed with cancer. If you just found out yesterday that you have the disease, are you a survivor today? I say absolutely YES, and many others agree with me. Surviving the diagnosis is nothing to sneeze at, and those initial days can truly be the most difficult part – emotionally, if not physically. Wrapping your head around the idea that your life is now changed forever is no small task. Staring your mortality in the face is scary.

Being a survivor and living strong are empowering. Wouldn’t you rather be called a survivor than a cancer patient or worse, victim? We can borrow some wisdom from other areas like sexual assault or other forms of abuse. Being a survivor rather than a victim is always preferable. The minute you receive the diagnosis, you are surviving cancer, and every day you keep on breathing after that, you will be a survivor. June 7 is National Cancer Survivors Day, and believe it or not, this day has been observed for 22 years now. I hadn’t heard of it until last week, which was, incidentally, my 3rd Cancerversary (May 23).

My friend Ethan Zohn was recently diagnosed with a rare form of Hodgkin's. You may recognize his name as the winner of Survivor Africa. His new status gives a whole new meaning to his moniker as a "survivor." I was always proud of Ethan for the way he played and won Survivor, and for what he did with the prize money - invested it in a non-profit he founded called Grassroots Soccer which utilizes soccer players to do AIDS/HIV education in Africa. I'm sure cancer hit Ethan especially hard since his father died of the disease when Ethan was only 14-years-old. As he has overcome other challenges in his life, I know he will do so with this one as well. Watch him talking about cancer on CBS's Early Show here.

National Cancer Survivor’s Day is an annual, worldwide Celebration of Life that is held in hundreds of communities throughout the United States, Canada, and other participating countries. Participants unite in a symbolic event to show the world that life after a cancer diagnosis can be a reality, according to the website.

I met a pediatric neurological oncologist at a 4th of July party days before I was scheduled to begin chemo in 2006. In addition to pumping him for information about my chemo drugs and what kind of side effects I could expect, I shared my awe that he could do his job day in and day out. “Working with kids who have brain cancer must be so hard,” I mused. “Actually,” he said, “it’s way better now than 20 years ago when I started – many of the kids actually live now.”

Wow! Medicine really has come a long way. Many of those kids are experiencing side effects later in life from the toxic chemicals used to treat their illness, but at least they are alive. Survivorship brings up a whole host of new issues for us to focus on, such as fertility issues for young adults, long-term side effects of treatment, emotional issues and financial ones too (all these new medical advancements cost ALOT of money). These are good problems to have because they mean that the “patient” is still alive to have them, but they need to be addressed nonetheless.

I am proud to be a survivor, and whatever issues I have to deal with pale when measured against more time with my family and friends, important work to do, writing something that might help someone else going through a challenge, and great adventures and travel to experience – the joys, and sorrows too, of life. And I can’t say enough about the wonderful people that I have met along the way on this cancer journey. It’s a club that no one wants to join, but an amazing community once you are part of it. Here’s to the survivors!