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Skin Diaries

Skin Diaries Together We Will

The Inspiration Behind the Enright Melanoma Foundation

By: Mark I. Zimmerman, MD, Founding President Enright Melanoma Foundation

On the 20th anniversary of the Enright Melanoma Foundation, I’m retelling the story of a friend I lost over 20 years ago to rekindle the passion of a foundation that continues to work in his name.

It started with four of us…

Rich Nelson and Peter Colucio were young physicians at the Summit Medical Group (NJ) when Joe Enright and I joined them in 1991. The four of us quickly became friends. Pete was a confirmed bachelor (and scratch golfer), and Rich, Joe and I were married with growing families. We ate lunch together, we played golf, and we often met up at Joe and his wife Kathy’s house for birthdays and barbecues. While Joe coordinated what he fondly called “male bonding weekends”, our wives often took a “spa” vacation together. Life was good.

Shelley, Joe’s 3-year-old daughter, scratched a mole on Joe, which bled. He saw his physician and the biopsy revealed melanoma. Joe went back for the “wide and deep” surgery that was hopefully going to remove all of the melanoma. It didn’t. Over time, while life continued and little Shelley got a new brother Nicholas, we learned the melanoma had metastasized.

Joe and Kathy went to MD Anderson Medical Center in Houston for what was the most promising treatment option at that time – interferon. To support him, I collected the signatures of close to 500 coworkers on a “get well soon” banner and Rich and I flew to Houston to be with our friend. While he went through a brutal interferon treatment, we watched the Superbowl together. Even as physicians, it was painful for us to see what this treatment was doing to our friend.

When Joe came home, it was clear that he only had a short time left. The four of us played a final round of golf even though Joe could barely hold a club, but he never complained. I arranged for a “make-a-wish” type of event and we met one of Joe’s favorite teams, the New York Rangers. Joe took pictures with his favorite players (including Mark Messier!) and got a hockey stick signed by the players. It was great to see a moment of joy on the face of my friend who was rapidly losing weight, and his battle.

Through it all, Joe maintained his courage and what appeared to be an inner peace. He never gave up, and he would not let the melanoma define him. My last memory of Joe was of him lying on his couch and apologizing to me for “not getting up and seeing me to the door” when it was time for me to leave. We lost Joe in 1996. Joe’s death was devastating to me. I had experience dealing with death as a physician, but I had never lost someone as close to me as a brother.

I thought about the things I learned from Joe – his loyalty, courage, dedication, calm demeanor, his love of family and friends, stoicism, and his love of life. But it was the quirky things that have stuck with me. Joe taught me…

  1. It is okay not to shave every day. 
  2. You don’t have to wear a tie all the time.
  3. It’s okay to leave your wallet in the car and let your friends pay for lunch!

Joe was loved by his family, friends and patients and I wanted the world to remember him. I wanted his children to grow up and learn about who their father was and what he meant to his friends and coworkers. And most of all, I wanted to do something so that no one else would lose someone in the prime of their life from something that is both preventable and curable if caught early enough.

Rich and I, along with co-workers at the Summit Medical Group, started the Joseph E. Enright Foundation in 1999 to raise funds to contribute to worthy causes in Joe’s name. Over the past 20 years, our passionate Board of Trustees has evolved and we have narrowed our focus and the redefined Enright Melanoma Foundation’s vision—to live in a world free of melanoma. Our mission is to raise sun-safety awareness and help prevent melanoma through education and early detection.

Over the years, the Foundation has held a variety of fund-raising events including golf outings and bike treks. Joe’s mom, Catherine, has always been at these events and was my “walking” partner. She could not have been prouder of the work the Foundation had done which in some way, had eased the pain of losing her son.

Everyone involved with the Enright Melanoma Foundation has been touched by this devastating illness in some way.  We understand the need to be vigilant, both in terms of sun protection and skin checks. Since starting this foundation, my own father has had four separate melanomas removed simply because of my insistence on a skin exam.

Our ask is that you become an advocate for your friends, family, teammates and coworkers – become a free member of our foundation, take our sun safety course, do business with our sponsors and business partners, donate time and money, network and spread our message.  Help prevent this from happening to someone you know and love.

To learn more about the Enright Melanoma Foundation, please watch the 20th anniversary video below, then visit: www.enrightmelanomafoundation.org/.

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Skin Diaries

Born with Sturge-Weber Syndrome and Thriving

By: Julia Terrell, Community Relations Director for The Sturge-Weber Foundation

It was the start of our 10th year of marriage and my husband and I were going to be a family of three! We were enjoying every moment of our perfect pregnancy and preparing for our first baby to arrive. I had just turned 37 and I remember the doctor asking me about testing. My response was, “No worries! If we find that our baby girl needs treatment, we will do our homework, get the right specialists and it will be okay.”

On March 23rd, 2009, I got up, got dressed and went to work. I was sitting at my desk when my water broke. Then, 20 hours of labor and a c-section later, Marissa arrived! The first thing I remember was everyone’s facial expressions while I waited on the other side of the curtain to see my daughter. In a conversation with my mother and husband, the doctor said, “No, the redness won’t go away. We will talk more tomorrow.”

What did that mean? I wanted to see Marissa even more to figure out what they meant. When I looked at her and saw the port wine birthmark and her swollen eye I thought, “She can’t go to school like this. We are going to need help.” I knew our world was going to be different than other new parents, I just didn’t know yet how different.

The next morning at the crack of dawn, our hospital room became a revolving door. Doctor after doctor arrived. Every doctor that came by left me with the feeling that more was coming, and I needed to prepare. When a dermatologist arrived, I thought, “Wow! They’re taking Marissa’s ‘birthmark’ pretty seriously to send a specialist so soon!” Finally, the pediatrician explained what could, should, or might happen with Marissa… starting with a CAT scan. I was screaming on the inside. “What does all this mean? Yesterday, they said it was just a birthmark and bruising, now my day-old baby needs a CAT scan!”

The results came back. They had been looking for calcifications (whatever that meant!) and luckily didn’t find any. The neurologist explained that she may have Sturge Weber Syndrome.   My head was spinning. I had no idea what that was, but we focused on the good news and started to relax and get ready to take Marissa home.

As the weeks turned into months, Marissa had check-up after check-up. I started to learn all I could about Sturge Weber Syndrome. I wanted to understand her port wine birthmark and the treatments for it, and to learn more about what I needed to look for in the future, like glaucoma and seizures.

I came across The Sturge Weber Foundation and we decided to attend a conference as a family. When we arrived, a larger-than-life lady came out of nowhere, scooped up my baby girl and loved her so tight. My shock turned to joy as she was the first person that didn’t look at Marissa with any judgment. I never felt so comfortable or free to talk about the syndrome Marissa might have and what we were going through as a family. We’d found a new home.

Thank goodness we had them because when Marissa reached 10-months our world turned upside down. Marissa cried and moaned all morning, then out of nowhere she vomited, and back-to-back seizures began. It took nearly five days to control the seizures. It was official. We had a Sturge Weber Syndrome diagnosis and we were sent home with medication.

It happened again when she was two and a half years old. These seizures were even harder to control. We were sent home again after five days with even more medications. She also developed glaucoma around this time. Everything they said could happen with Sturge-Weber was happening. Luckily, we weren’t alone.

Today, Marissa is 10 years old and is holding steady. She may have more doctors than the average 10-year-old and has a harder time doing the things her friends can do, but her life doesn’t stop every time she gets sick. She’s a champion for positivity and hope and she teaches me something new every day.

We always try to keep Marissa protected. We slow down when she’s sick to reduce the risk of seizures. We also protect Marissa’s skin, especially her birthmark from sunburn as it can burn easier, with clothes and hats from Coolibar. She needs protection all the time, so helping her develop a habit of covering up has been easier than constantly applying sunscreen. With Sturge-Weber Syndrome Marissa has still accomplished so much in her 10 years. She’s gone on vacations, advocated on the hill, participated in dance, sports and music, and she swims every week with her Special Olympics coach. Yes, she will struggle physically because of her syndrome, but she’s not afraid to tell her story and she believes in herself!

Every day, I am so proud of her.   We don’t know what tomorrow will bring for Marissa, but we’re so grateful that we have the blessing of watching the rest of her story unfold.

To learn more about Sturge-Weber Syndrome and hear more stories about wonderful people like Marissa, please visit sturge-weber.org.

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Skin Diaries

Julie Smith: “I may have Stage IV Melanoma, but it doesn’t have me.”

I was first diagnosed with melanoma on April 11th, 2013. I had a mole on my right shoulder blade that itched and would bleed. My family physician removed the mole, then called to let me know it was melanoma. A surgeon removed the rest of it and I was labeled “cancer-free”. At the time, I was grateful that I didn’t need to remove any lymph nodes or get a CT scan, I simply needed to visit my dermatologist every six months. I felt relief and followed the doctor’s recommendation.  

Then, in December 2017, I was experiencing pain around my stomach and had a hard time breathing. I thought I had pulled a muscle in my back. I visited a chiropractor, but I was still in pain. In March 2018, I contacted my family physician who checked me out and requested a CT Scan. He was initially checking to see if I had a blood clot in my lung, but instead, the results showed a 15cm mass on my right adrenal gland. It was pushing up against my lungs and making it hard for me to breathe.

At this point, my husband and I paused, looked back to my experience in 2013 and completely reconsidered my cancer-free diagnosis. Five years later, after meeting additional oncologists and medical professionals, we knew more and questioned everything that had happened in 2013. Had we been given the opportunity to go back to 2013, we would have taken every additional precautionary test or scan to make sure that the cancer-free diagnosis was accurate. While we had enjoyed five years with a false sense of safety, my cancer had metastasized.

That April, an oncologist biopsied the growth to see what it was and what we’d need to do next. Before the biopsy even happened, I knew I had cancer.  My faith in God has always been very important to me and I’d had a vision where God told me what my diagnosis would be and that I was going to share my story. I could see myself sitting in a room getting chemotherapy while sharing stories with other patients. God was preparing me for my upcoming journey.

I visited my neighbor down the street who was a pastor and asked him to pray with me. He asked me, “If this is cancer, what is your prayer?” I told him that I wanted to pray for the strength and the ability to help others with my story, and vice versa. I wanted to be able to make sure all of us are never alone while we go through this.

On April 9th, my husband and I saw my Oncologist and he gave us the news. He told us that I had Stage IV Melanoma that had metastasized and landed on my right adrenal gland, but it was curable and treatable. Just over a week later, I had surgery to remove the mass. I was cut from the bottom of my sternum to just past my belly button. They didn’t get all the cancer out, so I started immunotherapy and Opdivo and Yervoy at the beginning of May. I ended up in the hospital from mid-July to the beginning of August because the side effects made me severely sick. But, a PET Scan on August 6th showed that the mass that started at 15cm had been reduced by almost 6cm! We were making progress. The side effects continued to the point where I ended up having a hysterectomy in September.

A PET Scan in November showed that the mass, which had reached 6.2cm had stopped shrinking. They put me on oral target medicines called Mekinist and Tafinlar that I take daily. I’m truly blessed to be able to take this as it only works on someone with the BRAF gene. If I didn’t have that gene, I would not be sharing my story right now. By February 2019 the mass had shrunk to 4.5cm and I was officially in “partial remission”. My scan in May 2019 showed a reduction to 2.2 cm. By August of this same year, I received news that it had reduced another 24%! 

Already this year, I have been stronger and doing a lot more. I had previously lost my job because of the cancer, but I’m happy to report that I was able to go back to work in July 2019. I am working part-time and getting stronger day by day.

I have been asked numerous times what keeps me going and how I keep a smile on my face. The answer to that question is this…

Faith. Family. Friends.

We are all put on this earth for a purpose. My story helped me do something dear to my heart… glorify God by helping others along their journey. Without the support of my family and friends and knowing that God is with me always, I don’t know where I would be right now. There have been times when I’ve been so depressed that I’ve told God he could take me anytime. I didn’t want to go through anymore. But He has bigger and brighter plans for me. He’s not done with me and I’m not done fighting.

Every day, I’m amazed at how far I have come. Today, I am working, able to get outside and enjoy some of the many wonderful things God has created and enjoying time with family and friends, which absolutely means the most to me.

I may have stage IV melanoma, but it doesn’t have me.

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Skin Diaries

Couple Faced with the Hardest Decision of Their Lives

Staci’s journey started back in August 2018 when she had a large mole removed from her leg. It came back positive for Melanoma. By September, we’d learned that she had a particularly aggressive type of Melanoma and her diagnosis was Stage IIC. She had the tissue around her mole removed leaving her with a hole in her leg the size of a hockey puck. They also took a lymph node from her groin to see if the cancer had spread. It had.

More melanoma moved her diagnosis to Stage IIIC. In October—two months after her initial diagnosis—the rest of her lymph nodes in her groin were removed and tested for cancer. Three out of nine had cancer.

At this point in Staci’s cancer journey, she was 20 weeks pregnant with our son Boone (about halfway to a typical full-term delivery date). We had three options:

  1. Terminate the pregnancy and begin treatment immediately
  2. Wait to start the treatment when the baby was at 32-34 weeks
  3. Start a form of treatment that is safe for pregnancy, but not necessarily effective

As you can imagine, this was an incredible decision to make. We sought the opinion of a second doctor, who specialized in Melanoma at Northwestern Memorial Hospital in Chicago. We ultimately decided to wait on any treatment and induce the delivery early.

Between October and February—an incredibly short four months—we focused on preparing to be new parents as best we could. The baby was healthy and growing, although there was still a chance the Melanoma could spread to the placenta. Then on February 1st, we welcomed our son into the world. Boone Anton quickly became Staci’s greatest joy. After two weeks in the NICU, the test results came back negative for Melanoma. Knowing he was safe was a HUGE relief! After recovering from delivering Boone, Staci had another PET/CT scan on February 5th to get an updated baseline of the cancer in her body. In the short time we had waited to deliver the baby, the cancer had spread to the bones in her back, lungs, liver and spleen. Her diagnosis was Stage IV, meaning no longer curable. She started an immunotherapy treatment and went in every three weeks for about three-four hours with the hope that the treatment would shrink the cancer spots. All the while marveling in our precious little boy like a new mom.

A week shy of Staci’s 30th birthday on April 26th—only six months after her initial diagnosis and just short of two months after Boone’s birth—she lost her battle with Melanoma.

Since then, Boone and I have received an overwhelming amount of love and support from all the people who loved Staci. It continues every day and we’re blessed to have this community in our lives.

Right now, we are focusing on making goals each day. Some things are getting easier, some are getting a lot tougher. But I have Boone to keep me going. Many people have made an impact on his life and future already with love, donations and support. I can’t thank you all enough. He’s one special little guy and I don’t know where I’d be without him. Boone is not only our son, but he’s also a reminder of her.

Words can’t explain how much I miss Staci. I’m beyond honored to say that she was my wife. I will always miss and love her, and she will forever be in my heart. Not only because she gave me the best years of my life but she also gave me—and all of us—Boone.

I thank everyone who has taken the time to reach out and see how life is going for Boone and I. With your help and support we can continue to share Staci’s story. Boone will know his mother through all of you. He’ll also grow knowing that his mother’s battle and story helps save lives every day. In Staci’s words…

“I’m telling my story because this is a part of my life and always will be. There will be good days and there will be bad days, but I’m always doing my best to stay positive. Please remember to wear sunscreen and get any suspicious moles or marks on your body checked as soon as you notice them, don’t wait!

To keep up with Dustin and Boone and to share your support, please visit Staci’s Story on Facebook. Words of love, support and encouragement are very much appreciated.

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Skin Diaries

25-Year Battle With Melanoma Leaves Warrior ‘Fortunate’

My personal journey with melanoma began long before my first skin cancer diagnosis. I grew up near the Gulf Coast beaches of Florida in the 1960s and 1970s. A time when sun protection consisted of a floppy hat, a white t-shirt, and suntan lotion. Several trips to the beach ended with red, raw shoulders and a burned nose. I have light-brown hair, blue eyes, and a seemingly infinite number of freckles, moles, and skin blemishes. This places me in the high-risk category for skin cancer. Several years ago, a dermatologist told me that with my skin type, I should have grown up in Minnesota, not in Florida.

In the 1980s and early 90s, I continued to abuse my skin. Like many young people in those days, I worshipped the sun and spent too many weekends out by the pool baking in the early afternoon heat. I never used enough sunscreen and, when I did use it, I certainly never thought about re-application. In addition, I fell into the trap of occasionally using tanning beds to get a base tan.

In the mid-1990s, I decided to have a mole on my right shoulder checked out. A biopsy revealed that I had melanoma in situ. That decision in 1995 probably saved my life. It also started the next phase of my journey. From 1995 to today, I’ve had 8 melanomas – ranging from in situ to Stages I and II – diagnosed and removed. I also had a basal cell carcinoma removed from my upper left cheek. (You can still see the small divot in my face.) For the next ten or so years, I routinely visited dermatologists and general surgeons. I took precautions – putting on sunscreen and wearing a hat – but by then the damage to my skin was done.

A major twist in my journey occurred in 2011 when a previously biopsied lesion tested malignant, and I underwent immediate surgery to remove a Stage IIC tumor along with a tennis ball-sized area of surrounding tissue from my upper back. The surgery included an extensive skin graft and the removal of several sentinel lymph nodes from my neck (which, thankfully, were clear). I was in physical therapy for 6 months, and I still have stiffness in my back and limited range of motion. Years later, the hole in my back – as I call it – is very ugly and the scar tissue still tender. As my plastic surgeon once joked, I wasn’t going shirtless to the beach any longer.

On July 24th, 2013, another major turn in my journey happened when a PET scan revealed that melanoma had spread to my lungs. The likely source of the metastases was the malignant tumor removed in 2011. The oncologists believed that a tiny bit of melanoma escaped from the primary site via my bloodstream. I was told that if the cancer didn’t respond to treatment that I would likely die in 9 to 12 months. Naturally, I was in shock as I left the clinic that day. It was completely surreal.

Even with a metastatic melanoma diagnosis, however, I was fortunate. Following my 2011 surgery, protocol dictated that I would be scanned every three to six months for the rest of my life. So, I now have a permanent oncologist along with new dermatologists who understand my circumstances and are diligent in their skin exams. Anything in question is immediately biopsied.

A final twist to my journey is based on simple genetics. My metastatic melanoma is somewhat atypical. Following the 2013 diagnosis, two separate labs confirmed that my cancer has a c-Kit mutation, which is found in less than 7 percent of all melanoma patients. This rare mutation, however, responds well to a specific oral chemotherapy drug. Once I began taking the drug, some of my tumors actually shrank.

It sounds strange to say that I am fortunate, but I am. It is 2019 and I am still here to continue this journey. The metastases in my lungs remain relatively small and stable. In the past six years, I’ve been able to watch both of my children graduate from high school and college. My wife and I travel extensively and, yes, we go to the beach or the mountains every year. I still garden every spring. I will not let skin cancer keep from doing the things I love!

Finally, I use my circumstances to reach out to others with this dreadful disease and to advocate for more skin cancer research. In addition, I volunteer my time with national skin cancer organizations and local cancer charities. I maintain a blog that details my journey (from 2013 to the present): In Difficulty Lies Opportunity. My present journey continues with curves and bumps, but I now appreciate the small things in life that truly mean the most.

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Skin Diaries

Amy Nichole: “Love the Skin You Were Given”

My name is Amy Nichole. I’m a fine art portrait photographer specializing in children’s & teen photography. For my career, I’m always outdoors and occasionally in the studio. Since birth, I’ve always had very pale skin with freckles and a reddish tone to my hair. At the age of 8, I received an awful sunburn that actually resulted in a birthmark looking design on my right arm and parts of my back. Following the incident, my mother brought me in to see a doctor, but they just pushed it aside and chalked it up as a bad reaction to the sun.

Let’s fast forward to my teens, it was the IT thing to have tan skin. Being of British and Irish descent, my fair skin wasn’t going to tan easily. From laying out in the sun for hours covered with oil to using the tanning spray alternatives, I tried everything you could think of! With all my attempts of trying to fit in, my “birthmark” only got darker and that’s when the moles and spots started to appear.

At this point, I scheduled an appointment to have a dermatologist take a closer look at all these odd-spots, which lead to biopsies left and right. Every single extraction the doctor performed and examined came back as pre-cancerous. Although disheartened by the results, I’m thankful that this first scare educated me on the importance of constantly checking your skin and prepared me for the future I had ahead.

I’d begun getting skin checks every 3-6 months and made my skin health a top priority following my time with the dermatologist. During a personal ABCDE (Asymmetry. Border. Color. Diameter. Evolving.) in June 2016, a spot on my upper chest had drastically changed in size. I expressed my concern to my dermatologist and she agreed that biopsying would be appropriate. THANK GOODNESS I was so proactive! 4 days later, she personally called me to say that it was melanoma and was at Stage 1B and very close to transitioning to Stage 2. We scheduled my first excision quickly and successfully removed the melanoma before it worsened.

Since that day, my life revolved around taking care of myself while outdoors. I started always wearing long sleeves, hats, pants, you name it! That’s when I was introduced to Coolibar from the surgeon who performed my surgery. With my line of work and living in Nevada, I’m always outside and it gets difficult to cover up with the extreme heat, but I’ve been able to make it work.

After two years of being cancer free, I had my next scare. I began seeing a new dermatologist that was very highly recommended in the area, working with celebrities and high-profile individuals. After switching though, I just never felt like we were on the same page. For months I was still doing the 3-month check-ins to be safe but at one point he’d insisted for us to make it a checkup once a year – I declined this suggestion quickly. In February 2019, I was still with the same dermatologist and we came up to our eventually agreed upon 6-month appointment and I came in with concerns of a new spot that had randomly appeared. There was a little back-and-forth on next actions but I requested he take no chances and biopsy.  Just a few days later, he called me to let me know that “random” spot was, in fact, Stage 1A melanoma. While having my first Mohs surgery, they had to go in 3 times, so the whole operation was over 6 hours. During the visit, I requested the surgeon biopsy one other spot that had grown over a scar I had from a pre-cancerous removal. Guess what! Those results also came back as a 3rd melanoma diagnosis.

I’ve finally been upgraded to an oncologist for further testing. I’m not going to let this bring me down or define me whatsoever. I have an amazing support system and know it’s not going to be an easy road ahead. But, the scars and the love I have from everyone is what’s going to help me get through this. I even put on a special portrait session for 12 kids, that was inspired by the “This is Brave” Campaign, and we raised $900 for the Skin Cancer Foundation. You can see a lot of the images from the photoshoot within my blog! I wanted to help the younger generation be more aware about protecting their skin.

After reading my journey up to this point, I want you to take a little advice. We do need to put our faith in the doctors but also you NEED to be your biggest advocate. You are the one that sees your own skin 24/7. Protect yourself, love the life you live, scars are beautiful, and they will never define you. But most importantly, love the skin you were given.

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Skin Diaries

A Mission That Goes Beyond a Career

“Dry skin, maybe psoriasis, it’s nothing”, that’s what 3 different dermatologists told me when I asked about a small patch of skin behind my left ear. It came and went over at least 10 years and sometimes itched and felt dry. Sometimes I could barely feel it. I obviously couldn’t see it and they were the experts, so I assumed it was just my sensitive skin acting up. Maybe I didn’t wash behind my ears enough?

The itchy, dry patch behind my ear was basal cell cancer. Ironically, I was diagnosed 2 weeks after I started working at Coolibar. As VP of Brand Marketing and Creative Services at the time, I was immersing myself in the mission, sun-facts, warrior stories and education about prevention and our unique sun-protective clothing and accessories. It was kind of like Googling “skin cancer” except the knowledge I had gained in my first few weeks at Coolibar was completely factual. I had a heightened awareness of the potential consequences of my diagnosis. Although basal cell cancer is slow growing, I’d had it for over a decade. The voice inside my head immediately began cussing every derm who has ever looked at it and not taken the step to biopsy, even when I was advocating for myself. I was really angry! But that quickly turned into thankfulness for my primary care doctor who had referred me to Dr. Mary Meighan, who listened carefully, asked thoughtful questions and took her time during my annual skin check. I wasn’t even going to say anything about that itchy patch, but I did. Thank goodness.

I have practiced sun-safety for the majority of my life. During my teen years, I realized that even if I was tan, no one noticed because my skin is naturally very pale. So, while everyone else was tanning, I decided to be a rebel and achieve the palest skin possible. That said, I remember getting burned. In fact, there is a family story about me falling asleep curled up in a fishing boat and getting sunburned across the exposed strip of skin between my top and pants around age 3. I personally remember getting a brutal burn on my back as a teen, after spending the day at a surfing lesson with only SPF 30 lotion to protect me. My father got diagnosed with melanoma in his late 70’s. I knew it was in my cards. But, as they say, nothing prepares you for that diagnosis.

The suspense was killing me. How bad was it? I felt humbled by my vanity. I didn’t want a big scar. But the bigger fear was that I didn’t want cancer or any limitation from being a mother to my 10-year old daughter. Dr. Meighan referred me to her colleague at Zell Clinic, Dr. Karl Vance for Mohs surgery. I arrived for surgery and told him that I worked at Coolibar and that I was going to write a blog about my experience to help educate and support others. He was immediately all in and couldn’t have been more accommodating, narrating his every move. He even let me go behind the scenes where he was literally looking thru a microscope at the skin graft he’d just taken from behind my ear. He was making sure he got all the cancer in his first cut and wanted to see a minimum 2mm edge of clean cells all the way around the cut and he said, with some well-earned pride, that it was important for him to retain his stellar record. 99% of his Mohs surgeries got the cancer with the first cut. His record remained intact and so did my ear.

The cancer hadn’t gone very deep and only a little over an inch around. It was tiny compared to the skin cancer warrior’s I’d met on the Coolibar blog. I didn’t need to experience skin cancer to want to work at a mission-driven company like Coolibar. I already knew that tan skin is damaged skin and sun protection promotes anti-aging. My friends who worshipped the sun in their younger years now look their age and I, the eccentric pale girl, often pass for younger. But here I am, a cautionary tale, waiting for the next diagnosis. Hoping it’s not the big M. Take care of your skin! Get skin checks by a qualified dermatologist. Check your loved ones. Self-advocate with your doctors. Spread the word. That’s what I’m doing at Coolibar.

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Skin Diaries This is Brave

This is Brave: Holly Rowe

In 2014, I had a suspicious mole on my chest biopsied and was told it was fine. Nearly a year later, the scar was healing in a raised, strange way. I didn’t really notice until I went to an event in a sheer evening dress and the scar appeared to be a huge lump. I went back to my dermatologist to get a second biopsy.

THE call came while I was in NYC shopping for an Emmy Awards dress in honor of my nomination for a national Sports Emmy. The doctor told me I had a rare form of Desmoplastic Melanoma. I wasn’t really that worried because I was so uninformed about this deadly disease. I thought they would just cut it out and all would be well. Instead, I have been in the fight of my life since that day.

As it turns out, the type of melanoma I have is rare. 3 in 1 million people get Desmoplastic Melanoma and its usually farmers or people who work in the sun. I am not making that up. I was so DUMB not to cover up and protect my skin. I don’t believe in living in the past, but I REALLY wish I could go back and change things. Specifically, the following…. which I hope you take to heart:

  1. DO NOT TAN I was a tanning queen in high school and have worked outdoors at college football games for more than 25 years. Melanoma is 86 percent preventable. WE MUST PREVENT IT!
  2. TAKE YOUR DIAGNOSIS SERIOUSLY I didn’t in the beginning. I always thought “It will be fine” and then it wasn’t. At every stage, I was presented with more aggressive treatments the doctors didn’t push so I declined to not miss any work. Looking back, I would have chosen THE MOST AGGRESSIVE treatments at every turn.
  3. GET A SECOND OPINION I wish I had every step of the way. Doctors, while well-meaning, CANNOT KNOW what is truly happening inside of your body. What I have learned is that melanoma spreads quickly and is DEADLY. Attack it aggressively, be vigilant in screening.

The initial spot on my chest turned out to be a large tumor under the skin, it was removed along with several cancer-free lymph nodes. Yet, six months later, I had another tumor under my arm. A more significant surgery removed the tumor and 29 lymph nodes. Still, no sign of another spread even after a high dose of interferon chemotherapy. Then we found a tumor in my lung.

Through all of these surgeries and treatments, I don’t think it really dawned on me that melanoma could kill me until a nurse practitioner said, “Tumors in your lung used to be a death sentence.” That caught my attention. Later, another doctor told me to start considering how I was spending my time in life. I started waking up from dreams where I died. SO grateful that they were just dreams… But were they?

I am one of the lucky ones. The immunotherapy is saving my life. After two years of treatment—which involves infusions every 21 days—the tumors in my lung are shrinking. I am so grateful to Aim at Melanoma and the Melanoma Research Foundation for funding research to help eradicate this deadly disease. I am feeling so much better and have been able to keep a busy work schedule covering more that 80 games a year for ESPN. It hasn’t been easy working days after surgery with drains still stitched into my side or being bald on TV.

I had a wig named “Wanda” to wear on camera but had to get rid of her due to itching and being too hot. I went to a Texas football practice bald thinking I wouldn’t see too many people there. Then the World’s Sexiest Man sauntered into practice. I have only one picture of me with Matthew McConaughey and I look like Mr. Magoo.

Throughout all of this, I have had so much love and support from the teams, coaches, athletes and their families. The head coach of the University of Alabama, Nick Saban and his wife Terri sent me a box of specialty apples to keep the doctor away. WNBA MVP Breanna Stewart designed shoes for me and wore them during a Seattle Storm game to Stomp Out Cancer. My son, McKylin has been a huge help and support. Everyone has helped me stay positive.

As I keep fighting, there have been some crazy moments that, even in the fight of my life I have thought, “Oh, I need to get a little sun. I need to get a base tan.” I am shocked at how conditioned I am—we are—to keep thinking a tan is beautiful. What I know now is that tan can kill.

I’m changing everything about the way I work in the sun. I researched clothing to help protect me while I cover games and found Coolibar. Since we’ve connected, they’ve helped me put together cute, sun-safe outfits.

My takeaway for everyone reading this…

Melanoma is the leading cause of cancer death in young women ages 25-30 and the second leading in women ages 30-35. Be protective of your skin, get screened and be persistent. “It’s probably nothing” nearly killed me. PLEASE… When in doubt, check it out.

Thanks to all I’ve been through, I am a better person and am living my best life.

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Skin Diaries This is Brave

This is Brave: Eric Martin

It all started in 2011 with a stubborn scab-like spot on my back. I ignored it thinking it would go away on its own, but after it started to change colors and even bleed I decided to see a dermatologist. While in the waiting room, I was surrounded by posters of melanoma. It looked just like the mark on my back. Before the doctor had even said a word, I knew I had it.

“Am I going to die? What’s going to happen? What’s next?”

Up to this point in my life, I had never really been to a doctor before. I’d never even broken a bone! I was confused and scared. Even more so when my oncologist told me I had a 50/50 shot. Thankfully, my response was to have faith and put my game face on. I found a doctor who specialized in melanoma, Dr. Gregory Daniels at the University of California San Diego Moores Cancer Center.

Treatment started with surgery and adjuvant interferon, but it was soon discontinued when another lump was found with more melanoma. The cycle of surgery and interferon was repeated – but the reprieve was short lived. In August 2012, follow-up scans revealed 20 ‘relatively small’ tumors all over my liver. This time, surgery and interferon weren’t going to be enough. My doctor and I decided that the best bet was enrolling in a promising trial investigating tumor-infiltrating lymphocyte – or TIL therapy – at the National Institutes of Health with Dr. Steven Rosenberg. Some patients were seeing incredible results, which of course were not guaranteed.

At this point in my life – late 2011 – the stakes seemed higher than ever. My wife just found out she was pregnant with our first child which would be my second. Luckily, the TIL therapy worked. In fact, it was considered a “complete response,” meaning that I wasn’t necessarily cured, but signs of cancer had disappeared. It was a great year for me. My beautiful son was born, I was cancer-free, and things started to look up. Then, three green dots appeared on my right pectoral.

Immediately, I started a second clinical trial examining the experimental combination of nivolumab + ipilimumab. After my first infusion of ipilimumab, I landed in the hospital. The side effects of the immunotherapy were so extreme that I had to drop the ipilimumab altogether. Nivolumab and surgery kept the tumors at bay, but eventually, the spots came back. Tumors were now visible under my skin, and biopsies confirmed, every single one was melanoma.

I started interleukin-2 (IL-2) and over two sessions had 50-60 doses of the medication infused into my bloodstream. Once again, the side effects brought on by activating the immune system reared their ugly head. In all honesty, I wanted to die. It was horrible – easily the worst treatment I’ve ever gone through. I had every side effect that they warn you about. What’s worse, it was all for nothing. The IL-2 didn’t work.

The next two clinical trials I enrolled in were based on vaccines that were injected into my tumors. We saw some results, but the tumors continued to grow. We then tried Keytruda by itself, but after six doses the tumors still continued to grow. At this point, Dr. Daniels had run out of trials to enroll me in, but I was determined not to give up or lose hope.

In late 2017, I tried a new approach and a new clinic three hours north of San Diego, Dr. Omid Hamid at The Angeles Clinic. I’ve been through two clinical trials with Dr. Hamid now and our battle to keep my tumors at bay seems never-ending. But there is a silver lining. My experience motivated me to start my own prevention-focused non-profit organization called Stage FREE Melanoma. I don’t want people to have a story like mine. I want to make a difference. Stage 1 stories are so much easier. If we make early detection easy, fewer people will reach an advanced stage of cancer.

In 2019, we’re launching our mobile dermatology bus to offer free skin screenings and education on melanoma prevention at local parks and beaches in Southern California. We had an amazing “Build the Bus 5K” to raise funds to outfit the bus and get started. It’s going to be a great year for early detection and prevention!

People ask me how I stay positive after nearly a decade of trials and surgeries. I have faith. I know that researchers across the globe are working every day to crack the code and find a treatment that will work. Even if they haven’t beaten my cancer, clinical trials have kept me alive. After nine clinical trials, ten surgeries and more infusions than I can count—I’m still here, eight years after being diagnosed with melanoma. I’ve had ups and downs and have tried practically every FDA-approved therapy for melanoma – but the crux of my story, which all readers need to understand, is that my fight isn’t yet finished. I’m still searching for my silver bullet and the elusive letters N.E.D. (no evidence of disease). In the meantime, I have no intention of letting melanoma get in the way of life. I have faith and I’m going to put it to good use.

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Skin Diaries This is Brave

This is Brave: Bradly Tomberlin

I was the third person in my family to get melanoma. Not because my family had a genetic form of it…I was simply the third.

My dad Paul had a spot removed from his hand in his 30’s (the 1980’s) and on his scalp and face after he had a heart transplant in 2008. The anti-rejection drugs he had to take effected his immune system and put him more at risk. My sister Natalie also had a melanoma removed but was lucky to catch it early. So, we all knew about melanoma, but generally never thought too much about it.

Throughout my adulthood, I’ve been a male model. Which, for the sake of this story, means that I have had regular visits with a dermatologist – who did, in fact, remove a few moles and things to stay “on the safe side”. Although I was keeping up with my regular appointments, I still was outdoors a lot trying to get a tan and keep what I thought was a good color for modeling. In my younger days when I did more fitness jobs, I was always tan and laying out and even went to tanning beds. It was what you did to get and keep jobs. Just part of the career.

When I lost my mother Sandra to pancreatic cancer in 2016, I was checked to make sure I didn’t have the gene that linked pancreatic cancer and melanoma. Luckily, I didn’t have it.

Then, in January 2017, when I was 42, I had a weird bump on my head that almost felt like a pimple. I kept scratching at it for months thinking it would eventually go away. I finally showed it to my wife Julie, who is a pediatrician and she had me get it checked.

My dermatologist saw it and seemed to know pretty quickly; it was melanoma. She biopsied it right away and rushed the results. Yup. Melanoma. At this point, I was pretty shocked. Finding out you have melanoma is a pretty big bummer. When they said they’d have to cut in wider and deeper around the mole to makes sure they got all the cancer, I got pretty scared and anxious.

They ended up taking a pretty deep-sized cut from my head and creating more scars when they removed the closest lymph nodes in my neck to make sure it hadn’t spread. Thankfully, this is where the fear over my mortality and not knowing how sick I was started to pass. I had a great plastic surgeon help put my scalp back together and my fears moved to my career.

At this point, I was 42 and had been a model for 25 years, but I’d never considered ending my career yet. When it came time to face surgery and plan for the aftermath, I had enough sense to try to salvage my career. My plastic surgeon repaired my scalp in an ‘S’ shape to reduce the visible damage. He did a great job! You can still see the scars if I cut my hair too short, but thankfully my hair covers most of them.

Since the procedures, when I’m not working, I still enjoy being outside. I play golf with my Dad – I’m terrible but it’s a great time together – and I often hike with my wife or go mountain biking. We live in Texas and Utah throughout the year and I always try to wear long-sleeve shirts, sunscreen and hats now. I also see an oncologist every six months and dermatologist every three months. Both my wife and I have increased our awareness of the risks.

Reflecting on all of this, I remember when my mother was diagnosed with pancreatic cancer and doctors said there was really nothing they could do. They gave us a set period of time that we might have left with her, and that was that. I remember telling her, “You know, none of us are guaranteed a tomorrow.” I’m grateful I’m still here. Grateful that I DID get regular skin checks and found my melanoma in time.

Ultimately, you never know when it’s over. It’s an idea that crosses my mind a bit. For this reason, I’m all the more grateful that I still have more time.

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