In the spring of 2016 I felt a small bump on my scalp. I didn’t think much of it, that maybe I scratched myself in my sleep. Instead of healing, it got bigger, and eventually my barber identified it as a mole. I went to the clinic and was immediately referred to outpatient surgery for a punch biopsy. I got the call early the next day to return to the hospital where I was told of my stage 2 melanoma diagnosis. I was completely blindsided. I was the first diagnosis in the entire history of both sides of my very large extended families, one side with six family practice physicians. Preventive medicine was a priority in my family, and the word “melanoma” was never uttered. I grew up in an era before sunscreen and video games, where we played outside until the street lights came on. I was also surprised that men my age were the segment with the second-highest rate of occurrence for melanoma in the US.
After removal of the mole with clear margins and a positive sentinel lymph node biopsy, my diagnosis was advanced to stage 3b nodular melanoma and subsequently faced another surgery removing 81 lymph nodes from my neck. Fortunately, all tested negative for melanoma. I had started a new position as a librarian in between my two surgeries and was about to start a three-year immunotherapy regimen the following month. The combination of healing from two surgeries, a new position at work, and three years of upcoming treatment with unpredictable side effects was a lot on my plate in the summer of 2016.
That fall I had no idea my life was about to change, again. I was working an “Ask Us” shift at the library I wasn’t even scheduled for, and I receive an inquiry about the availability of a meeting room in one of our branches. I paste the link into our conversation and politely add the reminder to review our policies. We’re practically past the pleasantries and about to disconnect when I see a comment that the purpose of the room was to start a melanoma support group. I answered back “Stage 3 Warrior here” and I receive an invitation to attend. There I met Robyn (my fellow Be Brave Warrior in this campaign), and my door opened into the world of melanoma education and advocacy.
It started small, getting involved with an online support group, and slowly learning what others were doing with regard to efforts in raising awareness, teaching prevention, and advocating for research funding. I became a Certified Educator through the Melanoma Research Foundation, and in May 2017 posted a blog on the library’s SharePoint page with statistics about the disease I thought were important. I was then asked by my employer’s health and wellness division to do the same for the county page, and the response was overwhelming. I received many emails containing personal stories from colleagues, some of which were very heartbreaking. At that point I was asked if I could teach a couple of classes on awareness and prevention, which I have the last three years, in addition to working a table at my employer-sponsored health fair each spring, handing out the sunscreen and teaching sun safety.
In March 2018 I took my first trip to Hill Day in Washington DC, an event sponsored by the Melanoma Research Foundation which creates opportunities to speak with our state legislators asking for their support of measures to fund research and education. I also created my own event at the Minnesota State Capitol on Melanoma Monday, where we wear black to raise melanoma awareness at the state level.
In 2019, in addition to Hill Day and my own “Rock Your Black at the Capitol” events, I had the honor of participating in With love, Me, a national peer-to-peer cancer support campaign offered by Merck as part of their Your Cancer Game Plan. I had the opportunity to meet fellow patient advocates and participate in this important work at the national level. Also, and perhaps the most gratifying of all my work has been my nomination to the last two Congressionally Directed Medical Research Program peer reviews, where I participated as a consumer reviewer alongside reviewers in the scientific and clinical communities to critique and score research proposals in the hopes of being awarded federal funding.
2020 will be bigger than ever. I quit my job at the library to form a nonprofit, Connect Melanoma, home of the Black Ribbon Army. We plan to develop and pilot a K-12 sun safety curriculum, with the hopes of making it compulsory education nationwide. In addition are plans to wrap a car and conduct popup sun safety at outdoor events, as well as continued efforts to advocate for research and education funding.
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