I was diagnosed with melanoma on my right arm at 26 years old. At the time, I was about to graduate as a Physician Assistant. I couldn’t believe it! As I was leaving my appointment, I pulled over the car and cried. I was about to start a career in medicine and I was getting married! How did I get skin cancer? I was terrified.
Luckily, my melanoma was superficial, Stage 1, so it could be surgically removed without significant damage or scaring. I knew it could have been worse. Much worse. Melanoma is the leading cause of cancer death in women ages 25-30, and the second leading cause of cancer death in women ages 30-35. I was 26, and about to be a licensed medical professional and I was a part of a cancer statistic.
The one thing that saved me was my knowledge of medicine. I knew enough to go in and get a skin check when I noticed something was off. Early detection makes a big difference in someone’s diagnosis. Finding out at 26 that I had cancer also helped me reevaluate my relationship with the sun. I was born and raised in sunny Florida and loved being outside and sunbathing by the pool when I was younger. I rarely used sunblock because I tanned easily and therefore assumed I wasn’t susceptible to skin cancer.
It took my diagnosis and surgery to finally change my sun habits. It happened immediately. I started investing in sun protective clothing. I kept accessories like hats, sunglasses and umbrellas with me so I’d never be without shade or protection. I started wearing an SPF of at least 30 on my face and lips daily. I stopped all tanning right away, no tanning beds or sunbathing. And I do my best to avoid sun exposure between 10am – 2pm.
After my diagnosis, I also started working as a Dermatology PA. It is my job to educate, evaluate, diagnose and treat patients with skin cancer. The most rewarding part of my job is being able to empathize and understand what my patients are going through. Getting a cancer diagnosis is hard. I’ve been there! But thanks to that diagnosis I’m able to help and support others.
For some it can seem daunting to kick off a sun-safe lifestyle. But, there are small but significant things you can seamlessly weave into your daily routine.
Keep a hat, umbrella and UPF 50+ elbow-length gloves in your car so you can grab extra protection when you need it.
Switch out your lotions and chapsticks to make sure they have an SPF of 30+
STOP tanning, whether it’s in a salon or at the beach. Just stop! Embrace your natural skin tone! Porcelain is pretty!
Get yourself some quality sun protective clothing for sunny days. It’s made to block UVA/UVB rays while keeping you cooler out in the sun.
In addition to helping avoid skin cancer, all of these steps will help prevent early aging in your skin. If you ask any medical provider in a dermatology clinic what their #1 secret is to beautiful, healthy skin, we would say sun protection!
At the age of 38, Tracy Callahan received a phone call that would change her life. It was her dermatologist calling with good news. She had melanoma, but they caught it early. Her obvious first question, ‘How is this good news?’. As a nurse, and a mother of two young boys, Tracy’s life as she knew it had changed.
Over the next three years, Tracy would receive that same phone call another three times. It never got easier, but she eventually came to realize that ‘catching it early’ was indeed good news. When caught early, the survival rate for melanoma is 92%*. She is reminded daily that she continues to be one of the lucky ones.
After Tracy received her third diagnosis, she decided to do something. Inspired by the name ‘Polka Dot Mama’, given to her by her two boys after numerous wide excision surgeries and biopsies, Tracy started a blog and began to network with survivors and skin cancer organizations across the country.
“The more educated I became, the more I wanted to educate others. Unlike so many other cancers, scientists have actually figured out the secret to avoiding most types of melanomas—protect yourself from the sun and avoid tanning beds. But as simple as it sounds, I discovered that people have so many misconceptions about melanoma.”
A few months later, Tracy’s simple blog quickly morphed into an idea for a non-profit organization that could fund research, raise awareness and promote the early detection of melanoma. In September of 2015, she officially founded the Polka Dot Mama Melanoma Foundation, a federally granted 501(C)(3) non-profit, and appointed a board of directors.
In its inaugural year, with the help of many incredible supporters and volunteers, the organization was able to fund-raise over $70,000. More than half of that money was donated specifically towards melanoma research. In 2018, the foundation increased that amount and raised over $500,000. It began focusing on education and awareness efforts with projects like the Shade Shuttle and free skin cancer screenings.
In 2019, Polka Dot Mama set a new Guinness Book of World Record for the most skin cancer screenings—32 dermatologists and over 150 volunteers worked together to screen 963 patients over the course of 7 hours! The team of volunteers reached people of all ages, races and socioeconomic status. They even had a dedicated team for Spanish speaking patients. In the last two years, Polka Dot Mama has helped screen over 1,500 patients and identified some form of skin cancer in about 15-20% of those patients. Although this statistic is scary, it has reinforced the need to keep providing as many free skin screenings as possible.
“You never want to identify melanoma in the patients you see; but knowing that our efforts are saving lives is what keeps me motivated”.
For those who have connected with the amazing team at the Polka Dot Mama Melanoma Foundation, they know that their community is at the heart of what they do. They take pride in being a grassroots organization with a national reach—including an appearance on the Today Show with Al Roker! The organization is passionate about coming together for one common goal—the prevention and detection of melanoma. And Tracy and her story are at the center of this. Everything Tracy has experienced helps her live each day with a grateful heart. She often says, “If I can make a difference in someone’s life by sharing my journey, then these scars will be given purpose”.
“We’re going to keep stepping up and doing our part to prevent skin cancer through early detection. When it comes to making a difference, it’s all about showing up.”
I went to the beach with my children for a summer holiday in 2018. When we returned home, I noticed a bump near my nose. My first thought was, “A pimple? At this age? I better ramp up my face care routine”. After a week of scrubbing, and trying other blemish remedies, the bump was still there. It was time to see a dermatologist.
The ensuing (my first ever) appointment with a dermatologist changed my life. She started out by asking some background questions.
Doctor: What’s your personal skin history?
Me: Fair skinned guy that grew up in Florida during the 80’s.
Doctor: What was your SPF use while growing up?
Me: Cocoa butter and tanning oil.
Doctor: What is your family skin history.
Me: Older brother with multiple skin cancers including melanoma.
Doctor: Arches her eyebrow and responds… Let’s take a look.
Thirty seconds later…
Doctor: You have skin cancer.
I remember thinking, “Wow, she gets right to it”. But then my years of military training kicked in and my thoughts switched to, “OK, how do we take care of this?” She walked me through my options:
Measure it and see if it grows
Biopsy it and find out what it is
I asked, “How is number 1 even an option?” Apparently, it’s not, but they’ve gotten feedback that people liked to have options for treatment, so they added number 1. I had the sense to choose to cut it off.
When the pathology report came back, I was stunned. I had malignant cutaneous squamous cell carcinoma. Years later, I’ve learned that there are much more severe and aggressive types of cancer that are more difficult to treat. But in that moment, I was terrified. I had cancer. There is a common theme in conversations I’ve had with others about their own cancer experiences: the moment when you learn you have cancer is as significant an emotional event as you will ever have.
So what now? I lived in the DC area, so I was sent to Walter Reed Medical Center to undergo MOHS surgery to remove the cancer. The fantastic team there got all of it. It was the most amazing news I think I’ve ever heard. And just like that, my cancer story shifted from that of a patient to a survivor.
My cancer story is a positive one. I know full well it could have been far worse, but I had paid attention to changes in my skin and I had access to health care. Those two things made all the difference. I began to wonder about those that aren’t aware of the importance of prevention and self-exams, and who don’t have access to health care. Having survived skin cancer because of early detection, I set out to find a way to do something about it.
The fact that really caught my attention was this…
Skin cancer is the most common form of cancer in America, but it is also the most treatable, with early detection.
Awesome…then why don’t we just detect it early for heaven’s sake? If the cure for skin cancer is to find it early, then why do we do vision checks every year but not skin checks? Why is a skin screening a C priority in peoples’ lives, instead of an A priority? I knew there had to be a way to get educated eyes looking at more people’s skin. I had a conversation with an artist friend that helped me switch the lights on and find an answer.
I had approached Pat McGee, a singer/songwriter/friend of more than 20 years, about playing a one-year cancer free show for me and some friends. Our initial conversation was pretty…real.
Me: What do you think Pat?
Pat: I think it sounds remarkably self-indulgent.
Me: What if we raised money at the show and gave it to a charity.
Pat: Getting better.
A friend in the medical philanthropy world jumped in with the idea of doing multiple concerts to raise money. LIGHT BULB! The three of us outlined a plan for an organization that would focus on skin cancer awareness AND would get people started by giving them much-needed free screenings. We Rock Cancer was born.
That one-year cancer free concert morphed into a We Rock Cancer launch event where half the attendees opted to be screened, and half of those that were screened had issues identified that required a dermatologist follow up or biopsy. We were amazed. We had found a way to enable early detection and provide people with the information they needed to take action in a timely manner. All while they were attending a rock concert. At the end of the event, one of our volunteer dermatologists observed:
“You guys have found a way to make skin cancer screenings cool!”
Since that night, a team of amazing volunteers has come together to grow our mission capability and our reach. We immediately identified a mission goal to conduct free screenings for those that work in sun-intense occupations—landscapers, construction workers, lifeguards, golf course workers, etc. We also started an outreach program to provide screenings focused on musicians and those in the music industry. The artists and techs that are the key to our public engagement often have extremely limited access to health care.
We also started a Youth Ambassador Program, so that we could help students and young adults be the messengers of sun safety in their school and athletic team environments. We provide them with information and checklists to identify opportunities to improve sun safety and to work with organization leaders to make improvements. Getting this information to young people at an age when they are first making decisions on their own regarding sun safety is essential to successfully prevent future skin cancers.
What’s next? We are gratified that our message is resonating with those that realize spending a few dollars on prevention and early detection is the key to avoiding the dangers and expenses that come with skin cancer. We’re going to keep stepping up and doing our part to prevent skin cancer through early detection. When it comes to making a difference, it’s all about showing up. We’re grateful that our efforts garnered the attention of Coolibar. We’re in this mission together and are so grateful that they continue to show up for non-profits like us. We look forward to sharing their support with our community!
David Aizer, a South Florida TV personality who has hosted TV shows for Nickelodeon, CBS, The CW, Fox Sports and more, has taken his stage III Melanoma and turned it into a tool to motivate and inspire others. His five-year journey through PET scans, brain MRI’s, CAT scans, a two-year clinical trial, numerous vials of blood and constant anxiety showed him that everyone has two options in life:
Be scared, angry and self-conscious about the challenges you’re facing.
Embrace life’s challenges and be grateful.
He recently gave a motivational TEDx Talk where he challenged everyone to look at their battle scars, whatever they may be, and realize that they’re part of what makes you, you. Every scar is an opportunity to educate, motivate and inspire others. It’s a great listen for anyone, no matter the diversity you’ve faced in your life.
David also wrote a memoir about his experience. His first-person account of how battling melanoma impacted him is full of honesty and heart. His ability to look back, reflect and find the humor in his experience is something we all need. Be ready to laugh and cry, then call your doctor.
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.