Facing cancer and self-doubt

In 2005, on April Fool’s Day, I was diagnosed with a late stage melanoma, an incurable and often deadly form of skin cancer. My prognosis was grim, 6-9 months, perhaps a year, at best. After many debilitating surgeries and a clinical trial, I lived my life from scan to scan, three months at a time. Eventually that interval stretched to living one year at a time. I can’t recall when that changed, but, at some point, melanoma no longer crossed my mind on a daily basis. Clearly this “birthday thief” had picked the wrong girl!

The longer I survived, I kept wondering why I was still alive, when so many of my “melanoma friends” had died. Only one answer made sense–I was here to do something about melanoma. That sounded pretty vague at the time. But this message was so loud. My inner voice was shouting and refused to be ignored. Ultimately, I found my calling or maybe it found me. Volunteering to be a voice to help newly diagnosed melanoma patients and their families, along with educating the public about this horrible cancer, became my goal. I researched melanoma foundations to see which one fit my expectations. I started out slowly and carefully, to make sure I had made the right choice. Why do I doubt myself…seriously?

Becoming an advocate

The precise sequence of activities escapes me. So, in no specific order, I attended a volunteer summit, became a phone buddy and certified melanoma educator. The more people I met through the MRF, the more I knew this was my place. Every year, in early March, MRF volunteers, like me, head to Capitol Hill in Washington D.C., to lobby our senators and congressmen for whatever pressing issues make the legislative agenda for that year. My daughter and I are lobbying partners. I’m beyond grateful to her for joining me in the war against melanoma. Last year, we stepped it up and completed training as support group facilitators.

It was through the MRF that I learned of A Fresh Chapter (AFC). I was thrilled when I spoke with the amazing Terri Wingham, AFC’s CEO, and she told me I had been accepted as a participant in ReFresh, their pilot program for cancer advocates. The thought of traveling to California and being part of this once-in-a-lifetime experience seemed like a dream come true. In fact, I didn’t really believe it was happening, until I landed in San Francisco.

As I carefully studied the details about the ReFresh program, and after my phone interview with Terri, I started to feel a little concerned. What could I bring to this group? Would I belong? I’ve always described myself as a “grassroots worker bee.” I did not start my own foundation, nor was I on the board of any cancer organizations. Words like “burnout” and “broken” were not how I would describe myself. But there were other parts of the program with which I could relate, like learning best practices, leadership goals and how to achieve them. These were the areas for me. 

A huge lesson

Life is funny and, more times than not, the joke is on me, which is okay, because, who yearns for a boring life? This time life had a huge lesson waiting for this unsuspecting student.

After 13 years of, as I like to say, living with cancer, not dying from it, I thought fear had left my restless soul, and I had made peace with my melanoma. Not so fast, said life. It was only after sharing my deepest thoughts with a group of complete strangers that reality hit. Suddenly, I had to face the truth–there was no peace treaty between me and my melanoma. I was broken and burned out.

While I love my volunteer and advocacy work, it can weigh heavily on my physical and emotional health. As an advocate, I cannot share my thoughts and fears. I am there to listen and usually find myself carefully dancing along a fine line of knowing what is too much to say and what is not enough. These are the same things I could not and still cannot share with those closest to me. Frankly, they have no idea where I’m coming from or any interest in finding out. On some level, I understand. Most of their lack of interest is rooted in fear. Cancer is scary, and living with it gets real messy. Oh no, everyone worries silently, please don’t talk about death or quality of life issues. So I’ve kept my fears to myself. We all know that’s never a good idea.

Learning from the tribe

Listening carefully to the experiences shared by this incredible group, whose lives have been permanently changed by cancer, I realized that I was not being true to myself or others. The masks I wore–strength, positive attitude, and “big, bad melanoma warrior”–were too heavy and holding me back. They had to go. So I removed the masks and threw them away. The burden I’d been carrying was lifted, I felt freer and, yes, even a little scared. But my “tribe” accepted, welcomed, and valued me…just me. They helped me to acknowledge that I was enough. With the gentle comfort and non-judgmental support of this incredible group, I am now working on healing my brokenness. It’s the only way I can embrace my true being.

As I’m writing this, I realize how much I miss my tribe. Frankly, I miss them every single day. How strangers became trusted confidants and dear friends in a matter of days is still a mystery to me. Like I said earlier, life is funny and full of surprises. What I do know is a very different “me” came home from San Francisco, a new and improved “me” who is working on being true to herself and able to admit her shortcomings. This passionate, funny, kind, and inspiring group of unique individuals, along with the exquisitely orchestrated program, made me a stronger person and therefore a stronger advocate and leader. The melanoma world needs strong leaders. Now I feel ready for that role.

Yes, I am still a “work in progress.” I don’t want that to change, because it will mean life is out of lessons for me. Thanks to everything I learned, and continue to learn from my ReFresh experience, my personal and professional growth will be coming from a place of truth and strength. Ready or not world, here I come! 

Olivia “Libby” Kistler participated in the 2017 ReFresh Experience For Cancer Advocates and Leaders in San Francisco. She has had melanoma (an incurable form of skin cancer) since 2005 and is a melanoma advocate and educator. She is a member of the Melanoma Action Coalition and a volunteer with the Melanoma Research Alliance In Washington, DC.