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This is Brave

This is Brave: Bravely Raising Awareness Through a Pandemic

Hello, my name is Bethany Gambardella-Greenway. I was diagnosed with stage 3a melanoma in august of 2016. I have been supporting “This is Brave” since it first began.

In 2018, I introduced everyone to my journey. It was a big leap forward for me in terms of sharing my story and helping others: http://blog.coolibar.com/bethany-greenway.  

In 2019, I worked through the physical and emotional impact of my diagnosis and learned what I needed to do to stay strong and present for my daughters.

In 2020, I was invited to help introduce you to my amazing friend Patrick Guddal: http://blog.coolibar.com/this-is-brave-warrior-to-warrior/.

This year, in 2021, when Coolibar invited me to write again, I was somewhat stymied. I haven’t done anything! In the past year, I haven’t done any speaking, volunteering, or public fundraising. The activist part of my life was put on pause along with normal life thanks to the pandemic. 

Like a lot of others, the past year was extra challenging. In order to feel some level of normalcy and feel like I was making a difference, I started making masks for friends, family and a local business. All the time I would have spent the year before helping fundraise for melanoma research, I spent making masks.

Still, as an activist, I felt somewhat lost and without purpose. I know I wasn’t alone in this. I kept blogging and talking about my own skin cancer journey, with the added variable that COVID-19 brought into the mix. I put off my six-month skin check and seeing my oncologist. It was a very scary time for me and other cancer survivors.

Before the pandemic, my melanoma treatment has been immunotherapy, Yervoy, which really did a number on my immune system. It’s been more than a year since my last infusion and still when I get a cold or virus, I’m sick for double the time a normal person would be sick for. My immune system basically goes bonkers.

Knowing what we knew about COVID in the beginning, I was so fearful of what could happen if I got it. I am a single mother of two girls, Luciana (9) and Arabella (6). I was beside myself with fear. I’ve now gotten my vaccine; the fear has become less but it’s still present. I fear for my friends and family who haven’t gotten their shots yet, and I wonder what it will be like once we truly find our new normal as a society. Raising awareness in 2021 is definitely going to be different than in years past. At this point who knows what’s going to happen. However, what I am hopeful for is people coming together for the greater good and all those things everyone had to put off during 2020 finally come to fruition.

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This is Brave

This is Brave: Education and Support for Patients and Caregivers

One of the most important messages the Melanoma Research Foundation shares is:

You Are Not Alone.”

Melanoma is diagnosed in more than 196,000 Americans each year, and the numbers continue to rise across all races, ages and genders. Anyone can develop skin cancer. One of the MRF’s key roles is to support newly diagnosed patients, survivors and caregivers.

Doug Brodman, current board member, turned to the MRF as his first source for information and help when he was first diagnosed:

“Our family realized we needed to educate ourselves about this disease in order to better understand and prepare for the battle ahead. That’s when we discovered the Melanoma Research Foundation.”

-Read more about Doug’s story.

The “Newly Diagnosed” page starts with this advice:

You have been given a diagnosis, not a death sentence.”

When found early, melanoma is one of the most treatable cancers. In later stages, treatment may be more challenging but no matter how advanced your diagnosis is, the MRF has a plan for you. They’ve carefully outlined what you need to know, what you need from your treatment team, advice to help you get through appointments, access to information about clinical trials and financial assistance, and more. If you need it, it’s there. If it isn’t there, the MRF is connected with an entire community of medical professionals whose life’s work is to provide life-saving care.

Knowing what to do and who to talk to is huge, but many people will tell you the thing that got them through was the community. Patrick Guddal, melanoma survivor, MRF advocate, and founder of Connect Melanoma, likes to say:

“The skin cancer community is like a club that you never ever wanted to be admitted to. But once you’re there you never leave. The friends you meet and connections you make start to feel like home. I’m forever grateful for their role in my life.”

Read more about Patrick’s story.

There are a number of ways the MRF brings the community together. It hosts an online patient forum where you can connect with other patients and caregivers. It holds ongoing patient & caregiver meetings to provide opportunities to learn from leaders from major academic medical centers. It partners with other organizations like CancerCare, Imerman Angels and Patient True Talk to connect people to support groups or one-on-one help.

If you are, or know someone who is newly diagnosed, we strongly encourage you to visit the MRF’s Patients & Caregivers page. It can make all the difference in helping navigate a diagnosis.

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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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