MRF Blog

In Wayne's Words: Advocating as a Team

October 20, 2016 | Categories: Events, Patient Stories

I’m Wayne Conners, and my wife Missy Rand and I live in the Washington DC area, where we both work in the not-for-profit arena. Both of us believe in the value of volunteerism and community involvement. 
 
In March 2015 I wasn’t expecting to find a new community to get involved with when an itchy spot on the top of my head turned out to be melanoma. After sentinel lymph node biopsy and surgical resection, I thought I had caught it in time, dodged a bullet, boom, done. Then in-transit metastases appeared and it was back into the whirlwind. I am stage IIIB and 14 months into treatment with Keytruda, which seems to be having positive impact, with minor and manageable side effects. Like many people, I was overwhelmed by the initial shock and panic of diagnosis and the craziness of the ensuing weeks, and my response was to learn as much as I could as fast as I could. A dear friend and longtime cancer fighter, Karen, advised me to stay away from Google, because a lot of what you find out of the gate are horror stories. So I read some books, Googled only in moderation and then attended a patient symposium at Georgetown Lombardi Cancer Center. This was my first contact with the MRF and it temporarily slaked my thirst for melanoma information. It was packed full of valuable information focused on the state of the art in melanoma treatment, presented by physicians and researchers who were right there on the front lines. They even used language that regular people could understand. 
 
Since the MRF was now on my radar (and I was now on their mailing list!), when I heard about the Advocacy Summit and Hill Day, I talked with Missy and we decided it was time to do a little more than receive treatment. This seemed like a good opportunity to get more involved and make a contribution so we went and, thanks to the MRF, the entire event was energizing and educational. Along with a large and diverse group of committed advocates from across the country, we learned about the issues facing the cancer research and treatment field, the ins and outs of interacting with our legislators and other ways to advocate. I met the other members of the “Virginia delegation,” and over the two days we became a close team. One was even planning her wedding in the same historic house where Missy and I were married! Our delegation met with the aides of our legislators, educating them about melanoma and the issues of funding for research and treatment. It was both easier and more fun than I had anticipated, as we found receptive and interested audiences for our message.
 
After my amazing experience at the Advocacy Summit and Hill Day, I started a team for the Miles for Melanoma DC 5k Walk/Run and we raised over $5,000 for the MRF. Team Conners included one of our Virginia Delegation friends from Hill Day who walked with us and brought some relatives along. 
 
When I was first diagnosed, I was surprised to find very few melanoma-focused support groups. Apparently this is typical, because Missy and I were recently part of the first group of trainees for an MRF initiative to seed new melanoma peer support groups. Through the two-day training, we learned techniques for talking with fellow cancer fighters and how to start and run peer support groups for melanoma patients and caregivers. We renewed connections with some of our Virginia delegation friends from Hill Day, and expanded our network of melanoma friends. What connects us all is this very nasty disease. Yet, through the activities we’ve gotten involved in, we’re creating a support network of strong, empathetic, fun people.  
 
Soon after the training, Missy and I held our first support group meeting, in Alexandria, VA, where we live. Attendance was sparse, but we are undaunted and will continue to spread the word to build our group over the coming months. We have also already signed up for Hill Day 2017, and are looking forward to catching up with the Virginia delegation and our peer support group warriors.
 
I wasn’t expecting a new community and a new cause, but that’s what I got. I have found value in my involvement as an advocate, fundraiser and supporter as a means to helping other fighters like me navigate the madness of diagnosis and treatment and to contribute however I can to the eventual end of melanoma.
 
 

 

 

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