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Skin Diaries This is Brave

This is Brave: Patrick Guddal

In the spring of 2016, I felt a small bump on my scalp. I didn’t think much of it. I figured 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 a call early the next day to return to the hospital where I was told of my stage II 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, but the word “melanoma” was never uttered. I grew up in an era before sunscreen and video games, where we played outside until the streetlights came on.

After removal of the mole with clear margins and a positive sentinel lymph node biopsy, my diagnosis advanced to stage 3b nodular melanoma, and subsequently I 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 pasted the link into our conversation and politely added a reminder to review our policies. We were nearly past the pleasantries and about to disconnect when I saw a comment that the purpose of the room was to start a melanoma support group. I answered back “Stage 3 Warrior here!” and I received 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. I started with an online support group, and slowly learned 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 (MRF), and in May 2017 posted a blog on our 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 so 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 for the last three years, in addition to working a table at my employer-sponsored health fair each spring, handing out sunscreen and teaching sun safety.

In March 2018, I took my first trip to the Advocacy Summit & Hill Day in Washington DC, an event sponsored by the MRF 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, Rock Your Black at the Capitol. We wear black and share educational materials and information with our representatives and visitors to raise melanoma awareness at the state level. In 2019, Coolibar joined our event to help us reach and educate even more Minnesotans.

In 2019, in addition to Hill Day and my own 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 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 just launched a nonprofit, Connect Melanoma with the support of fellow This is Brave warriors, Robyn Fine and Cheryl Adams. It’s the official 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.

Through all of my previous networking to future endeavors, I plan on continuing to remain connected but also help as many people as I can to not feel alone in their own melanoma journey.

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Skin Diaries This is Brave

This is Brave: Robyn Fine

I was diagnosed with Stage I Melanoma in 2009. In February of that year, I noticed a mole on my back had turned from brown to black. My doctor took a biopsy and called three days later to tell me it was Melanoma and that I’d need surgery. At that time, I had no idea what Melanoma was, much less what the stages were. They removed it and advised me to see my dermatologist regularly and wear sunscreen.

I followed the doctor’s orders until September 2012, when I noticed a small lump in my left breast. I thought I had breast cancer! I went back to my doctor and had imaging done, an ultrasound and a biopsy. Again, my doctor called on October 1, 2012, to inform me I had Melanoma. This time it was Stage IV.

Since my Stage IV diagnosis, my melanoma has metastasized (spread) to five places in my brain, my breast, back and lymph nodes. I have undergone immunotherapy, chemotherapy, surgeries, two craniotomies and gamma knife radiation. Surprisingly, with all of this, my fight had just begun.

My brother Jason was diagnosed with Stage IV Melanoma on April 23rd, 2014, after finding a lump under his left arm. At this point, I really dug in to learn everything I could about Melanoma treatments and ways to beat this cancer. It’s amazing how the illness of a loved one calls you to act. Sadly, my brother lost his battle with Melanoma on March 20, 2015, just three days shy of his 45th birthday. He went from being a healthy, active, vibrant CrossFit competitor to gone in a year’s time.

Since his passing, I’ve had many more treatments and surgeries, but I’m happy to report that I’ve been NED (no evidence of disease) for six years! Part of what has gotten me through has been my mission to protect and prevent. I haven’t been able to say no to an opportunity to teach and spread awareness. Everyone needs to understand the importance of sun protection and skin cancer prevention. If there is an opportunity to speak or share my story, I am there. It’s too important to pass up!

I’ve been able to present to middle and high school students, college students, city workers, fellow survivors and advocates, and get out and fundraise alongside others. Each year, I’ve participated in local 5K’s including the Stay Out of the Sun Run at the Mayo Clinic Cancer Center and the Melanoma Research Foundation’s (MRF) Miles for Melanoma. Other Minnesotan’s and I, including Michelle Rivard from Coolibar, have traveled to Washington D.C. the past two years to speak with our representatives about the importance of funding melanoma research. Every time we share our stories, we secure vital funding that is saving lives.

My passion to protect everyone under the sun also motivated me to become a trainer for Ramsey County Parks and Rec Public Works and Lifeguards. We need to do a better job of protecting our city workers! Helping these individuals change their habits hasn’t been easy, but it’s worth the effort. Coolibar has even armed me with clothing samples to actually SHOW these workers what their sun protection options are. I was recently asked to speak at the American Traffic Safety Services Association in Fargo, ND. I’m advocating across state lines!! There I’ll be able to educate road workers from all over Minnesota, North Dakota, South Dakota and others.

While my role as an advocate is so important to me, first and foremost, I’m a survivor. In order to help others like me I’ve become a Certified Melanoma Educator through the MRF and completed an MRF Phone Buddy and Facilitator Training. I launched a local support group where we can share our stories and support each other. Connecting makes a difference! We’re able to share resources, helpful tips, and we’ve also been able to direct people to doctors, advocates, and mission-based brands like Coolibar who are always willing to help where they can.

All of these outreach opportunities and connections helped me meet other survivors and advocates like This is Brave warriors, Patrick Guddal, Cheryl Adams, Susanne Milne, Cassie Biesel, and more. Cheryl, Patrick and I have just launched our own Minnesota-based non-profit, Connect Melanoma. I am hoping to make Melanoma Awareness and Advocacy a full-time job soon!

A lot of people ask me, “How do you do it all?” In all honestly, advocacy comes naturally. This cancer has hurt my family and taken my brother. It also helped me realize I have a calling to help and protect others.

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