Warriors Advocate for Skin Cancer Prevention and Protection During a Pandemic
Coolibar launched This is Brave in 2018 when a young girl stepped up and reminded us all of the importance of advocating for and supporting individuals with skin cancer. When Quinn told her brother Graham to Be Brave, she was reminding us all that we can do this! We can battle through and no matter what the outcome might be, we’re better when we can Be Brave together.
In 2020, the third year of our This is Brave campaign and first year as the Official Apparel Partner of the Melanoma Research Foundation (MRF), our mission remains the same but the need for support is even greater. In the past few months, the world has shifted significantly in terms of patient care, research funding, and non-profit outreach. Key fundraising events like Miles for Melanoma have been postponed, and we’re working with the MRF and our community to find ways to continue funding life-saving research, and support patients and advocates across the country.
One in five Americans will develop skin cancer in their lifetime whether there is a pandemic or not. #CancerHasNoCurve. The good news, the MRF and the greater melanoma community continues to be strong and active. Patients and advocates have done everything from taking the message of prevention and protection cross-country, to telling a neighbor to care for their skin and get checked. You are amazing. Everything you’re doing counts!
A lot will change forever in 2020, but the need for skin cancer prevention and protection will not. If you’re able, we’re asking you to support skin cancer awareness and the MRF this May, Melanoma Awareness Month. Here is how you can help:
Read the awe-inspiring stories of our Brave warriors and share them with your friends and family. Awareness can save lives!
Consider donating to the MRF. They’ve created wonderful virtual programs to ensure that the funding for research and education remains strong.
Purchase a 2020 This is Brave UPF 50+ T-Shirt for yourself or send it to someone as a sun-safe gift for a cause. The proceeds go directly to the MRF.
Thank you for all that you do and remember…together we can BE BRAVE!
As long as I could remember, I’d had a red spot on the white of my left eye. In my late teens, it started to grow, change and become raised and irritating. After years of following this up with my general practitioner, I finally got referred to an ophthalmologist when I was 20. He did a biopsy, which came back benign (non-cancerous). Six months later, three very dark spots that resembled a skin mole grew on the same eye. I had the second biopsy done on these new spots and was officially diagnosed with conjunctival ocular melanoma at the age of 21 in January 2015.
When I was told I had ocular melanoma, the room became blurry, an overwhelming sea of emotion and fear came over me and drowned out everything he said following my diagnosis. Cancer, on my eye?! Can that even happen? Isn’t cancer for old people? Is my life basically over now? It had barely begun!
I felt nauseous, trapped and confused. I didn’t feel or look sick so how could my life potentially be on the line? I wondered how long it would be until this illness caught up with me and actually made me look and feel unwell. However, a few weeks passed, and nothing really changed.
I had a lot of check-ups until they informed me that my treatment plan would be watching and waiting. No chemo, no radiation, nothing. I was so confused. Grateful, but confused. It almost felt anticlimactic, such a scary diagnosis and yet all I needed to do was see my oncologist every six weeks.
Six months went by during which I had more biopsies which all came back benign. We started to relax, my appointments became less frequent and life went back to normal. Then, what felt like it happened overnight, I noticed five new spots on the white of my eye and a small lump underneath my eyelid in August 2015. I went to my general practitioner first and he called my ophthalmic oncologist’s office right away. I was booked in to see him a few days later.
I could tell my oncologist felt unsettled at this appointment, he didn’t like what he was seeing and booked another biopsy. All the new spots he removed came back positive for malignant melanoma. This was when the tune changed. Things escalated quickly and I was being told I was going to have to lose my eye and eyelids, and that they’d close over the socket for good in order to save my life.
I still remember the pain and anger I felt in the moment. The very normal life I had imagined for myself—the typical, all-American family life with a husband, a house and a great career—was ripped away in that moment. I went home that night and thought about my options. Very quickly, I realised that I would do whatever it took to save my life. The only real choice I had was whether or not I’d let this break me. Would I hide away from the world or would I find a way to embrace it?
Well, within a few days, I decided I wanted to embrace this new look and make it my own. I went online and found beautiful, bright eye-patches that were going to be my fabulous new fashion accessory. It took me less than 24-hours to embrace my diagnosis and the opportunities it presented.
On October 9th, 2015 I had an exenteration—complete surgical removal of my eye and the contents of my eye socket. The first few days I was in a lot of pain. I couldn’t keep food down and I slept in 90-minute cycles. On the fifth day I had the dressing taken off and got to see my new look for the first time. To best describe how I felt, I’ve taken an excerpt from my book Eye Won: Powerfully Positive, Ridiculously Resilient…
“I almost bounded out of bed to see my new face. I expected to see someone foreign staring back at me, but I saw my bright familiar smile, my freckled cheeks, my button nose, my on-point eyebrows. The only difference, there was one eye staring back not two.”
I analyzed my face and saw a soft beauty in it and my smile brightened as I accepted the woman in the mirror as me. I silently told her that she was beautiful, strong, courageous and most importantly…still me. I tried out my new eye-patches and explored the world a little, embracing my new fashion accessory.
Life quickly went back to normal. Within a month, I was working, driving, studying and socializing. The only thing that had changed was I had a fun new accessory, my eye patch. Most importantly, it looked like we had eradicated the cancer! While the surgery had been challenging both physically and emotionally, I was grateful we’d done it and I could go back to living life as a twenty-something-year-old woman.
On September 9th, 2016 I remember sitting at home with my mum planning out how we were going to celebrate my first annual eye-versary when I had a seizure. I was raced to the hospital and told that the melanoma had spread to my brain and had become Stage IV Melanoma. My heart sank, I knew that everything I had faced up until this point had been child’s play in comparison to what I was about to face.
After having brain surgery to remove the cancer, I had to relearn how to walk and start an ipilimumab plus nivolumab (Ipi/Nivo) blend to prevent the development of more tumors. Looking back on that time, I know I felt terror. To get through it, I focused on what I was grateful for, the blessings I had and the things that made me smile.
More than anything else, the overwhelmingly beautiful feeling of gratitude is the first emotion that comes to mind when I think of my cancer journey.
Three and a half years after my brain surgery and I am thankfully still stable. I have such a beautiful appreciation for life and have accomplished so much. I completed my university degree during my treatment for Stage IV Melanoma. I hiked the Kokoda Trail in 2018, exactly two years after taking my first steps. I wrote and published my book Eye Won, which became a best seller in October 2019. And I got engaged to my incredible fiancé!
Cancer has taught me so much about myself and about the world. While it’s not something I would ever wish on anyone else, I would not be the woman I am today without it. For that I am grateful.
October 8th, 2006. I remember the day quite vividly. A week prior, I had been to my dermatologist to have a small bump on my head looked at. Not overly concerned since it didn’t have any of the typical signs of melanoma. My doctor scraped off enough for a biopsy and I went back to work. Then, on October 8th, I was in a conference room and my phone buzzed. It was my dermatologist’s office calling. I excused myself from the meeting and stepped into the hallway to take the call. It was my actual doctor and not the physician’s assistant. After an exchange of pleasantries, she paused, “I got the results of your biopsy. It’s cancerous. You have melanoma”. I was stunned by the gut punch. The rest of the day was a blur. At that moment, my cancer journey had officially begun.
Two months later in December, a surgical oncologist removed the tumor along with some adjacent lymph nodes on both sides of my neck. The tumor was deeper than expected and diagnosed as stage III melanoma, but it was removed. Margins were clear and I had no cancer activity in my lymph nodes. I felt fortunate and believed that I dodged a bullet.
In 2008, after two years of being NED (no evidence of disease), a follow-up routine chest X-ray showed shadowing and spots on my lungs. The melanoma had returned and had reached a stage IV diagnosis. Over the next 18 months, I had three lung surgeries to remove new tumor growths and wedge resection surgeries that took away 25% of my lungs. I tried to stay positive and committed to outrunning the cancer, literally. I took my exercise to a higher level, enhanced an already good diet, and made a conscious effort to mitigate the stress in my life.
After my third lung surgery, I completed 30 days of Interferon treatment (a form of chemo). It was challenging and I’d never felt worse in my life. Despite the steps I’d taken, by May of 2011, a CT scan revealed that I had tumors on both lungs, pancreas, liver and behind my heart. My stage IV diagnosis became more severe.
I met with my oncologist to map out a treatment plan. I wasn’t going down without a fight. Unfortunately, another surgery was not an option and my doctor didn’t know of any clinical trials. Basically, there was no plan. My doctor looked at me and said, “there is nothing more I can do for you”. Those words pierced the air. Emotions ran rampant, but reality had a way of setting in quickly. I had stage IV melanoma and there is no stage V.
After trying to fully comprehend the odds I was up against, I promised myself that I would find someone, somewhere to help. I wanted to give myself the absolute best chance for survival, so I sought out arguably the best place for cancer treatment – MD Anderson in Houston, TX. They are ranked No. 1 in cancer treatment year after year and are known for advanced cancer treatment options.
My wife and I flew from Atlanta to Houston and met with Dr. Patrick Hwu, a highly respected oncologist specializing in melanoma (today he is the Division Head of Cancer Medicine). When we met, it was clear that he had already reviewed my case as he said, “We’ve got a growing number of options in the melanoma treatment toolbox and I think we can help you. It’s never a good time to be diagnosed with melanoma, but if ever there was a time now is it”.
Amongst the options available, we talked a lot about a relatively new treatment category at the time called “immunotherapy” – training the cells of your immune system to seek out and destroy the cancer cells. After weeks and weeks of various testing, certain treatments were ruled out since my cells did not respond. Ultimately, the best option was a clinical immunotherapy trial that combined high dose IL-2 interleukin (a standard of care treatment option for melanoma at the time) with the Mage 3 vaccine. IL-2 by itself had a pretty low rate of response, but the clinical trial was to see if tying it to a vaccine would improve the response rate. The treatment had drawbacks – side effects, physical hardship, mental challenges, a long duration, and of course, the fact that the trial was new and nobody had completed it at that time.
To fulfill the inpatient treatment requirements, I would travel to MD Anderson in Houston for a week at a time, then return home for one to three weeks. I did this for about eight months. The biggest criterion of the trial protocol was that after each week of treatment I underwent a full CT and a brain MRI. If tumors were stable or shrunk, I continued with the trial. If they grew, then I was removed from the trial.
I started the first week of October 2011. The treatment was tough. Each time I was in intensive care hooked up to multiple machines monitoring every vital you can think of. I gained about 40 pounds of water weight each week and then would have to lose it before I was discharged. I experienced uncontrollable chills and muscular spasms. My heart rate would spike into the low 200’s after each dose of IL-2. My taste buds all but disappeared and I hardly ate. Somehow, in the haze of it all, my immune system responded, and my tumors began to slowly shrink. Week after week, month after month, my CT and MRI results showed progress and I kept going back to Houston for treatment.
I finally completed the inpatient portion of the trial over the eight-month period. Although extremely happy to finish, I wasn’t done. I continued head, neck, chest and pelvic CTs and brain MRIs immediately prior to each return trip to Houston. Every three months, then every six months to get lab work done, meet with my research nurse to answer a litany of questions about how I was doing physically and mentally, meet with Dr. Hwu and, of course, get my vaccine. On February 14th, 2014, in Houston for my checkup and scan results, I received the news I had been dreaming about. My scans and MRI showed no tumor activity. I was in remission.
After that landmark day, I continued getting CT scans, MRIs and the vaccines for another year. In July 2015, after 4+ years of countless hours in the ICU and flying back forth from Atlanta to Houston for the vaccine, I become the first patient to complete the IL-2 & MAGE 3 clinical trial.
It’s now May 2020 and I am 13+ years removed from my original melanoma diagnosis. I’ve had a combination of 16 major and minor surgeries. But most importantly…I’ve been cancer-free for six years.
My advice to you after all of this is to accept the facts and realize that no one is immune. More people are diagnosed with skin cancer each year in the U.S. than all other cancers combined.
Melanoma is the third most common cancer among men and women ages 20-39, and on age-related cancers, melanoma is the #1 most diagnosed cancer among 25 to 29-year old’s in the United States. So be smart! PLEASE wear sunscreen and sun protective clothing, check your entire body for changes in your skin and see your dermatologist regularly. Most importantly…enjoy life and take care of your body – it’s the only one you get!
For those still battling cancer – keep the faith, keep fighting and don’t ever give up. Above all, always believe that miracles are possible.
Melanoma is one of the deadliest cancers in the world. When someone becomes diagnosed with melanoma, or any type of cancer, it changes them. It changes not only their world, but the world of their loved ones. There are a lot of feelings that bounce around during that time. A lot of pain, anger, frustration, and fright, but mostly: strength and courage. These feelings, and those changes happened to me when I was diagnosed with melanoma at the age of eighteen.
A lot of people are familiar with my story due to the fact that I was able to use my title and platform, as Miss Illinois USA 2018 to raise awareness, and promote prevention and healthy living. Although people are familiar with the story of my diagnosis, they are oftentimes not familiar with the struggle my diagnosis caused me and my loved ones, along with how I’m doing now that I am melanoma free. To me, those two things are just as important as the story of my diagnosis. If you are unfamiliar with how I got diagnosed, I encourage you to read this piece on the Melanoma Research Foundation website, which shares my story before continuing on with this blog.
Like I mentioned before, a diagnosis affects not only the individual being diagnosed but also the loved ones in their lives. When I found out about my diagnosis, I had to stay strong. I couldn’t show that pain, anger, frustration, and fright that I was feeling. Not because I didn’t feel it, but because I needed to be tough for the people I love. I was eighteen at the time, a senior in high school, and did not understand what was happening to me, and why it was happening to me. I always knew about cancer and how horrific it is, but like most people, I never thought it would happen to me. But it did.
This diagnosis nearly broke my mom. I never saw her so afraid, unsure and just upset. It consumed her, which consumed the rest of our family. I couldn’t let my fear and anger make things worse. I had to keep telling myself not to cry, and not to let my fear of the unknown show so that she could at least see that I knew things were going to be okay, even though I didn’t. Even though I don’t regret bottling up those feelings and pretending I was alright to my family and my friends, I know how psychologically harmful that was for me. Thankfully, once I was melanoma free I was able to go to therapy and let those bottled up emotions out. Therapy helped me move past feeling embarrassed and thinking I am “ugly” due to the scars on my body. It helped me stop wearing a Band-Aid on my thumb even though I was all healed up. It helped me gain the confidence to win Miss Illinois USA, and walk across the Miss USA stage in a bathing suit. And it helps me continue to spread awareness and prevention towards this awful disease.
Although I am melanoma free, and although I’ve gone to therapy, I’d be lying if I said my diagnosis and that scary time in my life didn’t affect me today. Although I am doing much better and feel more confident, I still catch myself covering up my thumb when I talk to people. I still catch myself picking out a shirt that covers the scar across my chest rather than the one that doesn’t. I still catch myself holding my breath every time I go to see my dermatologist for a checkup. Although I am melanoma free, almost every time I have that checkup, I need another biopsy because something looks “off”. Waiting for those results is always excruciating for me, but thankfully they’ve been coming out benign.
I’m very thankful for the position I’m in that allows me to share my story, and spread the message of early detection and prevention. You cannot always prevent cancer, but there is so much you can do that helps. It kills me when I still see my friends going to the tanning salon. I share with them my concern and how I would hope they know better because of my story, but all they say is “they know but need to be tan”. There are so many alternatives. It is safe to go get a spray tan or buy self-tanner. If you have the ability to avoid unnecessary UV rays, then you should be taking it. You should be making sure you’re wearing sunscreen and sun protective clothing when you’re outdoors and making sure you add a dermatologist to the list of doctors you see each year. Early detection possibly saved my life. I know it’s easy to read this and think that it won’t happen to you, but please remember that I didn’t think it would happen to me either, and although I was so lucky, the pain of that diagnosis affects me every single day.
In December of 2013, my wife Terry and I were living in Prague where I had been working for four years. We had returned to the states for Christmas break and were looking forward to seeing and spending time with our family.
I had also scheduled an appointment with my dermatologist as I had a small pimple that turned into a cyst type bump on the top of my head. On December 23, my doctor took a biopsy and three days later I had a diagnosis of Spindle Cell Melanoma, a rare subtype of malignant melanoma. He advised that I get to a specialist immediately as it was large and very deep and needed to be acted on quickly.
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 (MRF). The knowledge base on melanoma is quite extensive, and frankly a bit overwhelming so the MRF website was an invaluable resource for us.
The process from diagnosis to surgery with daily radiation treatments took three months. As we were planning our return trip back to work in Prague, I discovered a small bump just outside the radiation area. A biopsy confirmed the melanoma had already returned and further testing with a PET scan showed that the melanoma had spread throughout my liver and lungs. I now had Stage IV Metastatic Melanoma.
In 2014, that diagnosis had a very poor prognosis. My doctor said my best chance was a clinical trial that was being offered at Moffitt Cancer Center in Florida. We went back to educating ourselves on what all this meant! Then, armed with more information, I chose to participate in the clinical trial. With that choice, I knew that being a part of cutting-edge research in a clinical trial was just as important as finding a solution for my situation.
From June 2014 to November 2015, our time was filled with long drives to and from treatments, side effects, and a significant adverse reaction that resulted in a hospital stay. But, all of it was in the hopes that we were forging a path to a remarkable outcome.
On November 13th 2015, we finally had a reason to celebrate. We heard the words I wasn’t quite sure I’d ever hear, “Doug, your scans show no evidence of disease”.
Throughout my journey from Stage IV Melanoma to No Evidence of Disease (NED), I felt it was important to help others understand the value of education, research and advocacy for this disease. My experience on a successful—albeit challenging clinical trial—led me to develop a passion for ensuring that the necessary research continues to be funded and findings shared. I am thankful for the scientists, doctors and organizations that bring this disease to the forefront.
In retirement, I’ve taken up a role on the MRF Board of Directors and I am dedicated to helping the organization that is best positioned to educate patients and caregivers fund research grants to find a cure and build a strong, supportive network of advocates. As part of the board, I have the opportunity to contribute to a worthwhile organization that I am certain will make a significant impact in finding a cure for melanoma.
My journey started almost fourteen years ago when my mom noticed a raised pink bump on the base of my right ring finger. I was only a year old at the time. For many months, my mom took me to numerous doctors to try and find answers. Each one told her it was nothing; however, she thought otherwise. She thought it looked like a melanoma lesion my grandfather had years prior. Her continual pestering to doctors finally worked, and I was called in for a 30-minute “cosmetic” surgery to just remove the bump. The 30-minute surgery turned into two hours, and afterwards the doctors sent the tissue they removed to be biopsied at several leading cancer centers. All of the results came back inconclusive. After weeks of back and forth, I was finally referred to MD Anderson Cancer Center. It was there that my melanoma was confirmed, and my cancer journey began.
Being that melanoma was known as an old person disease, people didn’t take me seriously. One time, someone told my mom to get me out of the melanoma clinic because children weren’t allowed to be there. Little did they know that I was the patient.
At MD Anderson, I met the doctor that saved my life, Dr. Jeffrey E. Lee. At this point in time, for a melanoma diagnosis like mine, the life expectancy was just six months. And this was for adults – I was only a toddler. However, that was not the plan for me, and I write this 156 months after my diagnosis, living life to the fullest because I wasn’t even supposed to have a life at all.
Following my surgeries, I had a port put in and year-long treatment with interferon. For a solid year, I experienced extremely high fevers (up to 105!), night terrors and was a very sick little girl. But, I survived, and for that I am grateful.
Surprisingly, I have no memories from my cancer treatments. It must be God’s way of protecting me from those bad memories.
Although my family and I were thrown down a path that no one would ever want to go, we decided to make the best of it. In the year following my treatment, my mom and grandfather, the one who had a melanoma like mine, established the Marit Liv Peterson Fund for Melanoma Research with the goal of raising half a million dollars to support melanoma research at MD Anderson Cancer Center. We began by asking family and friends to contribute, but half a million dollars proved to be too difficult of an amount to raise with them alone. That’s when we decided to hold our first golf tournament to help raise money. Since we began, 100% of every dollar raised has gone directly to Dr. Lee and his melanoma research team. And every year, Dr. Lee and his team join us for free skin screenings and to report back on the research that was funded by the golf tournament. To date, we have raised over two million dollars and have caught five melanomas and numerous other skin cancers on our players through the skin screenings.
Although my melanoma was likely genetic, I do all in my power to help educate others on melanoma prevention. In 2016, the Melanoma Research Foundation (MRF) reached out to me and my family and invited us to go out to Washington, D.C., to advocate for melanoma research. We were taught about needs in the melanoma community such as funding and education. Then, the next day, we went to Capitol Hill and spoke with our senators and representatives about these topics relating to melanoma. We have been going to D.C. for the past four years and through this, we have connected with Coolibar! When I was in 8th grade, I was invited to go to the MRF’s Pediatric Summit in Colorado Springs, Colorado, where I took place in a mini fashion show wearing Coolibar clothes. It was super fun for me and all the little kids there.
The path that someone takes when presented with a challenge can say a lot about who they are as a person. When my family and I were presented with cancer, we decided to make the most of it. As weird as it sounds, my cancer has given me so many amazing opportunities that have given me a greater look on life and how I should appreciate every day that I have.
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 Melanomawith 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.
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.
Skin cancer is something that runs in my family. My grandfather has had basal cell removed and is constantly having biopsies on his face. My mom has had Mohs surgery on her forehead and had melanoma on her left calf as well. Growing up, my mother always warned everyone to stay out of the sun, but I was always about tanning. When I reached my early 20’s, I pulled back from the bronzing and started to take better care of myself. In all honesty, I did it to preserve my youth.
This past summer when I was 30, I went on a trip with a big group of friends to a camp in Wisconsin. The first two products that went in my bag were SPF 50 and bug spray. I was the most careful one on the trip—constantly reapplying both products—but of course, I returned home covered in bites on my legs. 43 bites to be exact. 43 bites that itched so badly I couldn’t sleep. Two weeks later they were still there, mostly concentrated in one area of my left calf.
I was getting ready for my cousin’s wedding, carefully applying my anti-itch cream, when I noticed a spot in the middle of all the bites. It was a freckle the size of the tip of a permanent market. It looked strange. Sort of scabbed. I was pretty sure it was always there, but it had never looked like this. I sent a photo to the doctor who does all of my facials. She said the scabbing could be from scratching the area and to apply Vaseline daily until I could come in to get it checked. When I realized that it was the same spot on the same leg where my mom had melanoma removed, my gut told me it was cancer.
After returning to Chicago, I went into the office to have the doctor look at my leg and was sent directly to Northwestern Skin Cancer Institute. I was nervous. At 31 years old, I admittedly had never had a full-body scan before. I was always careful, so I didn’t think I needed to. Two biopsies and seven days later, I received the news that the funky freckle was indeed melanoma. I tried not to cry but I was terrified. I also felt fortunate. I had found my spot extremely early and with an excision, I would fine.
I called my mom and said “what are the odds” that I had melanoma in the same spot, same leg. It turns out the lower calf is actually an extremely common spot. It’s right where those slightly cropped workout pants end. A place often missed. A place I never thought to apply SPF when I was out and about!
The day of my excision was nerve racking. My new doctor explained the procedure. I couldn’t believe that this freckle, that was maybe a 1/4 of an inch, required a cut that was about 4.5 inches long, an inch wide and deep enough to cut to the muscle!
Physically, it was a difficult healing process. The excision was just below my calf, which meant it was pulled every time I took a step. There was a lot of swelling, but elevating was hard because it hurt to even rest it on a pillow. And I wasn’t healing well. Mentally, it was difficult as well. I couldn’t really exercise which is a big part of my mental health. Then there was the fear. Fear of being outside and exposed to the sun. I felt so fortunate to have caught this early, but the pain made me terrified of finding more spots on my body.
Throughout the process, I decided to share parts of the experience through social media. I was nervous at first, but the feedback and comments I began receiving were so up lifting. People began to share their stories with me, and I realized I wasn’t alone. But the best part was the amount of messages I received from people—friends, acquaintances, strangers—thanking me for sharing and telling me they just booked a full body scan because of my story.
I am now six months out of my excision and my mindset has completely changed. I realized I cannot live operating from a place of fear of melanoma. I have to live my life and take the necessary precautions. I am much kinder on my body, placing less stress on looks and weight. Instead, I am grateful for my health. I have also changed my ideas on what “influencing” means to me. My goal is to spread knowledge and awareness about melanoma and help people stay uplifted and informed. If sharing my story inspires others to book an appointment that could save their lives, then I know I am doing something right.
Our warriors are many things…grateful, connected, thankful, determined, enlightened, educated, strong…BRAVE. They are part of a greater community of amazing individuals faced with the massive hurdle that is cancer. Through reading all their stories, they’ve proven that one thing is absolutely certain…we’re stronger together.
In that spirit, past and present warriors have shared personal messages to each other. Some are related, some have never met each other, but they’re all connected by a shared journey and determination to BE BRAVE.
What a unique and challenging time we are dealing with right now. The good news is…while many of us are self-isolating at home, we are less impacted by the sun! But I know when we are able to return to some sense of normal life, many of us will rush to participate in outdoor activities. By nature we are all sun worshippers, it has been a very difficult transition in my life to realize that the sun can hurt me. But thanks to protective clothing and great companies like Coolibar, when we do finally get to bask in the sun, we can do it responsibly and with great protection.
For all the nearly diagnosed, stay strong and try not to let the worry of what is happening in our world coupled with your new diagnosis be overwhelming. There are many improved treatment options that can help you and positivity is key in overcoming this new challenge. Just know you have an army of fighters, survivors out here rooting for you, supporting you and here to listen. Together we can accomplish anything!
To my husband Steve. Love, Marilee.
Steve Hamilton is my husband and one of the strongest people I know. Since the day of his melanoma diagnosis in 2006, he has handled this unexpected journey with grace, strength, positivity and determination. I don’t recall a day where he appeared defeated – and there were many days he easily could have been. He willed himself to beat this beast and did so with a positive attitude that I am still in awe of. I know in my heart of hearts that in addition to the phenomenal medical care he received and the support from family and friends, his positive attitude was a critical part of his survival. There were times when HE was the one actually keeping ME – his caregiver – upbeat. Please read his story and if you or a loved one is battling a melanoma or any serious disease, please do everything that you can to be determined to stay positive. There is hope.
To my Melanoma brother Pat. Thank you for being on this journey with me. Love, Bethany
I have a brother, not in the literal sense or by blood, his name is Patrick Guddal. Patrick and I have been walking a nearly identical path for nearly four years now. Patrick and I were both diagnosed with stage III melanoma in the summer of 2016. When I finally met Patrick at a skin cancer event here in Austin, TX I felt an immediate kinship. For cancer patients, it’s hard to find someone who truly understands what you have been through and how it changes you. Patrick “gets it”. He understands the trials and tribulations that a cancer diagnosis brings with it. During his fight Patrick chose to become a melanoma advocate and educator. He has spoken at multiple events sharing his story and the importance of early detection. His strength and self-awareness became a pillar to support his newfound mission to educate others about skin cancer and how dangerous it can be. I am inspired by his openness, perseverance, and willingness to share his story to help others. I hope you are too
To my friend in advocacy Robyn. Your unbeatable positivity is incredible, Susanne.
I met Robyn for the first time at the yearly MRF Hill Day in Washington D.C. and was immediately impressed with her positive spirit, her great strength though her melanoma journey and most of all her natural involvement in advocacy. Robyn’s own melanoma story, as well as her brother’s, speaks to the heartache of the illness but also of the amazing stories of recovery and how to find new purpose in life during and after a cancer diagnosis. Robyn is involved in advocacy in several ways; with children, with adults, in the workplace and all efforts are both locally, in her neighborhood, and on a state level with the MRF. Clearly, advocacy has become a calling for Robyn, which is truly to the benefit of the melanoma community as she clearly excels at bringing awareness and education about melanoma. Robyn has an inner strength that has allowed her to stay positive and strong throughout her journey. This shows in her great smile, unbeatable positivity, and her direct and friendly interactions with anyone she approaches regarding the melanoma cause. I look forward to all of you to read Robyn’s amazing story, to follow her on social media and to meet up soon in our Be Brave Coolibar shirts.
To my friend and mentor, Doug. Thank you for your leadership, Cheryl.
When the going gets tough Doug Brodman steps up to lead the charge. I met Doug when he was elected to the Board of the Melanoma Research Foundation and it was there, we connected as fellow Stage IV survivors. Our stories were similar as we both had received Christmas-time diagnosis that set our worlds on fire and landed us in clinical trials that would not only change our lives forever but ignite a quest to help find a cure for melanoma. Doug has brought a great energy to the MRF by incorporating his mad business skills to energize the group. He has worked to initiate new strategies to grow the MRF that will ultimately fund more clinical research and help advocate for patients looking for resources to survive. Melanoma is the most competitive race you’ll ever run, and Doug understands how to help win the marathon. I am honored to know Doug and to call him a friend and mentor.
To my incredible daughter Marit. We are so proud of you! Love, mom.
Some friends lament that Marit pulls out her ‘cancer card’ a lot. And, I say, thank goodness she does! Her commitment to the fight against melanoma has been her living legacy, and at the young age of 15 no less. As she has grown up, so too has her message and purpose. It’s been a journey from promoting awareness that pediatric melanoma actually exists, to imploring politicians to fund critical melanoma research, to most recently serving as the self-appointed ‘sunscreen queen’ among her friends at her all-girl high school; these friends now diligently practice sun safety for fear of Marit guilting them. I’m beyond proud to be her mom and hope she continues to play that ‘card’ to the benefit of us all.
To Jess, the Ocular Melanoma sister I’ve never met. Your gratitude is inspiring. Thank you for your story!
Like Jess, all I wanted was an all-American life full of adventure and happiness. I never imagined ‘full of adventure’ meant adding in the ‘cancer adventure’, but it did. I also, would not wish this adventure on anyone, but it has made me a better person. The journey, the whole journey – the highs and lows, the peaks and valleys, the moments I couldn’t stop crying in fear to the moments when the good in so many people made my heart feel more gratitude than ever. My life before cancer, during treatments and now living with cancer – the ‘cancer adventure’ has been the best one yet and that shines so clear in Jess’s writings too.
Initial treatment of ocular melanoma does not involve chemo, we don’t lose our hair or look like we are battling the biggest journey of our life like others – but internally we may be a mess, many of us lose our sight or our natural eye and for months if not forever we walk around wearing a patch and/or a prosthetic eye. That is when we can’t hide our cancer. The patch is a forever accessory for Jess or for me I pray I don’t accidently touch my prosthetic the wrong way and it flips upside down in public or pops out! 😊
After my initial treatment, I never wanted to look in the mirror – I didn’t know who I was – I could only see tumor filled eye looking back at me. But then a year and a half later my tumor began to grow back, and my next treatment plan was enucleation. I didn’t know what to expect when I awoke and removed my eye dressing but when I did, I finally found peace. Jess – I loved that you shared you expected to see someone foreign, but you saw your bright familiar face, your smile, your on-point eye-brows and you saw you again. After enucleation – I too saw myself again – even my on-point eye-brows. Just one eye not two.
When you read someone’s writings and you laugh, you cry, and you feel like the same words could come from your mouth you know they have felt and traveled on your journey before and with you even if your physical paths have never crossed. Jess – your words are truthful and honest, they are brave, courageous – your gratefulness is inspirational. Living with cancer and one eyeless in your 20s, I in my 30s is not fair but I admire you for finding the best and not missing out on anything and everything life has to offer. The only choice you believed you had was whether you’d let this break you. You choose to find ways to embrace your journey the whole journey and I am honored to share our stories together. Life is too good to not enjoy the ride and thank you for taking us on your ride. Be brave my friend, my OM sister! Let’s celebrate #BeBrave #BeGrateful #BeYou together. #youcantakeoursightbutnotourvision