I may be a little sensitive because I am about to start radiation treatment myself, but I am sad and angry that three wonderful and beautiful souls recently died of lung cancer. Mark, Lisa and Chip were all in their 30’s and had full lives ahead them with their spouses and young children; eight children under the age of eight will grow up without a parent. It’s tragic and disturbing, but it does give me comfort to know that they, and their loved ones, didn’t have to fight alone.

DSC_3582There aren’t words to explain the feeling of helplessness that I felt as I watched my mom, dad, aunt and two grandparents suffer and die of lung cancer. I didn’t have support, there was no compassion and nobody understood. There weren’t any grassroots lung cancer walks or events anywhere in the country, and there certainly weren’t any lung cancer support programs. In fact, no one even talked about lung cancer. 15 years ago there was no lung cancer community at all.

Coincidence or fate, LUNGevity was started in my community and it was the first organization in the country dedicated exclusively to funding lung cancer research. I met Melissa Zagon at the first meeting I attended in December, 2001. I knew Missy was one of LUNGevity’s co-founders, she was 33 years old and she had stage IV lung cancer. What I didn’t know was the extraordinary way in which Missy responded to her illness and how that would change me. As Missy took her journey with lung cancer from personal to public, she became the face of courage for thousands of people, and she changed lives with her hope and wisdom.

My relationship with Missy quickly evolved into a unique friendship that extended beyond LUNGevity. My brother and cousin both asked me how I could befriend Missy knowing that I would suffer another loss to lung cancer. Honestly, I hadn’t thought about it. Missy and I discussed many times that lung cancer would kill her; we just didn’t know when. Plus, I found incredible support and empowerment through my friendship with Missy and my work with LUNGevity.

It may have been easier to walk away, but I couldn’t. I knew in my heart that lung cancer was so much bigger than my story and what lung cancer had done to me.
Through my friendship with Missy I learned that I didn’t have to cure lung cancer to change a life. Missy shared with me feelings and fears that she didn’t want to burden her family with. As painful as it was, helping my friend live and die with peace in her heart was a gift I will cherish forever.

And, then it came full circle and I was diagnosed with lung cancer six years ago. Even though I knew I was at high risk because of my family history, I was shocked and upset. But, I was not helpless — and I wasn’t alone. My involvement with LUNGevity armed me with weapons (knowledge, friendships, and relationships with doctors and nurses) I needed to face my own lung cancer diagnosis with courage and not fear. Boarding that roller coaster ride of uncertainty, it was reassuring to know that there was finally an incredibly large and caring lung cancer community fighting with me and for me. More importantly, my kids would never have to suffer in silence…like I did.

While I teeter a lot between the caregiver/advocate role and my survivor/advocate role, the connections I make with others continues to be the most meaningful thing I do. I don’t have to be best friends with someone to change their life. If I can help one person, it matters. My mom always said, “It takes one candle to light a darkened room.” Conversely, finding meaning in tragedy helps give a purpose to any physical and emotional suffering that I feel, and it helps me make sense of all that I have gone through.

Randy-Elles-Photography-4253-X2I can’t stop thinking about my Hope Summit tribe, a group of lung cancer patients and caregivers from all over the country that LUNGevity brings together annually for a weekend to learn, have fun, provide support and share hope…and then we communicate through an online forum the rest of the year. We are not a support group per say, but cancer fosters an instant intimacy. There is nothing like connecting with someone else in the trenches. From the outside looking in, no one can understand, and from the inside looking out, it can’t be explained. None of us voluntarily joined the tribe, but all of us belong. Comrades in arms; we get it, in a way that no one else can who has not lived it.

Humor, fun and celebration are a large part of the tribe, but the losses hit hard, and often force us to look in the mirror and face our own mortality. It’s painful, but fighting alone is more painful. Lung cancer can be very lonely. I have been fighting lung cancer indirectly and now directly for 32 years, and for 18 of those years my family and I fought lung cancer without support, without a fighting chance! That is why I am overcome with so many emotions when I see and feel the undeniable strength, love and spirit that is woven together and wrapped around each person; it is firm and fierce. That is hope — knowing you’re not alone and believing that nothing, even cancer, can defeat the human spirit.

The song For Good from the Wicked soundtrack has always reminded me of my friendship of Missy. We saw the play together, but only after she died, and my journey continued, did I come to understand the message behind those words; it was up to me to carry on the struggle for what is right, and with each soul I touch, a piece of mine is renewed.

Missy left a beautiful story that has become part of my story. There is both good and bad, but every step of the way and every person along the way has been woven into this story. I had the honor of giving the eulogy at Missy’s funeral and I ended with some of the lyrics from For Good:

I’ve heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don’t know if I believe that’s true
But I know I’m who I am today
Because I knew you…

Who can say if I’ve been changed for the better?
But because I knew you
I have been changed for good

It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You’ll be with me
Like a handprint on my heart
And now whatever way our stories end
I know that you have re-written mine
By being my friend…

Who can say if I’ve been
Changed for the better?
I do believe I have been
Changed for the better

And because I knew you
Because I knew you
I have been changed for good

I believe that I have been changed by every person I have met throughout my journey. I think I have been changed for the better. I know I have been changed for good.