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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Uncategorized

Together We Will… Help All Children with Sun Sensitivities!

By: Karene Boos, founder ZeruZeru Simama Sasa!

ZeruZeru Simama Sasa! has two meanings. Literally, it means “People with Albinism Stand Up Now,” (encouraging them not to be afraid); secondarily, it can also mean “Stop Prejudice Against People with Albinism Now!” 

ZeruZeru, Inc. is a non-profit 501c3 organization incorporated in the United States. ZeruZeru was started by attorneys Eric and Karene Boos in 2013 for the purpose of securing human rights of the poor and vulnerable in Tanzania–especially persons with albinism.

Albinism is a genetic condition that results in a lack of the production of the pigment melanin. This means that people with albinism are very sensitive to light and sun exposure. They are at risk for severe sunburns leading to skin cancers, other skin disorders and sun-damage thickening of the skin. People with albinism also have vision impairments related to the lack of melanin.

Beside the increased skin cancer risk, people living with albinism in Tanzania are living in fear for their lives. In Tanzania, those with albinism are at risk to be hunted, abducted and mutilated for their body parts for use in traditional medicine and mystical belief practices. A complete set of body parts from a person with albinism can bring in up to $75,000 on the black market, according to a 2009 report by the International Federation of Red Cross and Red Crescent Societies. The Government of Tanzania has taken important steps to tackle the problem of ritualistic violence against people living with albinism, but extra protection is still needed.

Often the families of children with albinism cannot provide security for their children in rural areas. The primary goal of ZeruZeru is to establish a sustainable, self-sufficient, safe-haven campus for children with albinism and some children with physical impairments. With the help of Helena Ntambulwa at Mary Mother of God Perpetual Help Center in Tanzania and her staff, ZeruZeru is currently caring for nearly 70 children.

The Center provides a safe environment for the children to learn, grow, play and be integrated into local life. The children are provided with access to education, general health care and daily preventive skin care. The Center also educates the families and friends of these children about the health risks associated with their lack of pigment and the importance of proper sun protection. Children often arrive at the Center with severe burns on their skin. Because of the lack of melanin, it is vital to their health that they wear UPF 50+ clothing that blocks 98% of all UV rays.

UVA rays, which penetrate the skin more deeply than UVB rays, contribute to and may even initiate the development of skin cancers. As opposed to UVB rays, UVA rays can also penetrate most fabrics.

Skin Cancer Foundation

We’re grateful to Coolibar for its commitment to helping protect our children by donating hats, gloves, long sleeve shirts and beautiful dresses and tunics. Beyond keeping them safe, it’s our job to help these children thrive. With UPF 50+ clothing, they can get out and play, learn and explore!

Please visit our website at www.savethealbinochildren.org or contact us at info@savethealbinochildren.org for more information.

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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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Experts Say

All T-Shirts Are Not Created Equal

A cotton tee may not safeguard us at the beach, let alone on the street. Dry, a white cotton shirt provides and ultraviolet protection factor (UPF) of 7*, and wet from the pool, the protection level drops to about UPF 3, exposing us to UV radiation.

Today, 90% of skin cancers and premature aging are a result of UV exposure. As skin cancer rates are on the rise, this is one easy way to keep your skin safe from UVA and UVB rays. Coolibar’s ZnO t-shirts, tunics, dresses, hoodies, polos, and pants are super soft, comfy and UPF 50+, blocking 98% of both UVA and UVB rays. All our fabrics are guaranteed UPF 50+ from the first time you wear a shirt to the day you retire it. We may be t-shirt and fabric geeks, but the right fabric matters.  

What is ZnO?

ZnO is a proprietary Coolibar fabric, a blend of cotton, bamboo viscose (a natural UV fighter) fabric embedded with millions of zinc oxide minerals. What makes our ZnO fabric unique is the zinc oxide minerals are inserted at the fiber level and can never be worn or washed out; they protect you as long as you need them for the lifetime of the garment. Zinc Oxide protects against UVA and UVB rays and has many skin comforting qualities, often used on the most sensitive skin types.

Why are clothes called UPF instead of SPF?

Between UPF and SPF, the concept is essentially the same, to protect your skin from ultraviolet radiation. What SPF is to lotions, liquids, and serums, UPF is to fabrics and clothing. Beyond the obvious difference between lotion and clothing, SPF measures sunscreen protection from UVB rays, the burning rays that lead to cancer. When applied correctly, an SPF of 30 blocks 97% of UVB rays (don’t forget to reapply too).  SPF doesn’t account for UVA rays which also can cause cancer and aging. Look for the broad spectrum on the label on your sunscreen.  UPF measures light transmittance, and Coolibar UPF 50+ blocks 98% UVA/UVB rays. Coolibar fabrics exceed all U.S. standards and are tested to the Australian standard, the highest rating standard in the world. All Coolibar fabrics are UPF 50+.

Stop settling for just a plain shirt. When shopping for your next t-shirt consider going with a tee with UPF power to keep your skin safe while you enjoy all of your adventures.

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Live Wisely

The Secret Advantage of Long Sleeves

On a hot, sunny day, long sleeves get a bad wrap. In fact, when it’s hot out, a wearer in long sleeves will endure laughter and ridicule on the golf course and the endless question, “Aren’t you hot in that?” Here’s the good news, if you wear UPF 50+ long sleeves when the rays are pummeling you, you no longer have to contend with those who simply don’t know the secret advantage of long sleeves.

The fact is that when the sun is shining and temperatures rise, UV protected long sleeves keep you safe from sunburn and keep you cooler. Doctors have long recommended wearing UV sun protective clothing as a way to prevent sun damage and protect against skin cancer; however what science is now proving that blocking UVA/UVB rays in combination with long sleeves actually keeps us cooler too.

A number of years ago, an inquisitive research team led by C Richard Taylor and Virginia Finch of Harvard University and Amiram Shkolnik and Arieh Borut of Tel Aviv University were puzzled by the ability of the Bedouins of the Sinai to minimize solar heat loads in a hot desert. The study, aptly called Why Do Bedouins Wear Black Robes in Hot Deserts?, measured the people’s overall heat gain and loss in the robes, considering their amount of coverage, long sleeves and the color of their robes.

A volunteer wearing different levels of coverage and different colored clothing was faced into the midday sun in the desert for 30 minutes. Withstanding 95F, the volunteer placed in the Negev desert at the bottom of the rift valley between the Dead Sea and the Gulf of Eilat wore either: 1) a black Bedouin robe; 2) a similar robe that was white; 3) a tan army uniform; or 4) shorts (that is, he was semi‑nude).

The results were surprising, but not surprising. Long sleeves and more clothing kept the wearer cooler. As the report puts it: “The amount of heat gained by a Bedouin exposed to the hot desert is the same whether he wears a black or a white robe. The additional heat absorbed by the black robe was lost before it reached the skin.”

As far as desert temperatures in our everyday world, when it’s hot, our bodies sweat as a natural cooling mechanism. Let’s face it, sweat sitting on skin feels sticky and damp. Then often, the temptation is to “release” heat by removing clothes or wearing short sleeves, leading to damaging sunburn. Comfortable loose fitting UPF 50+ long sleeves in a wicking fabric transfers sweat away from skin so it can dry, and it creates a small air flow between skin and fabric to keep it cool while protecting against sunburn and UV damage.

While long sleeves can actually keep skin dry and cool, when it’s exceedingly hot, long sleeves are not a replacement for drinking liquids. Medical professionals will always recommend wearing a sun hat, UV clothing, taking frequent shade breaks, using a UV umbrella for portable shade and drinking plenty of hydrating fluids.

So, the next time friends question if you’re too hot in your long sleeves, you have your answer. Recommendations are for sleeves that are loose enough for some air flow. Long sleeve styles like UPF 50+ wraps layered over a tank top or accessories like UPF 50+ scarves channel air in, around and flow heat out, like a bellows. As for the color debate, it appears dark is not an issue as far as staying cool in the deserts. Nor, would we suppose, it be an issue around the pool or on the boat either.

Sources:

Strange, but true: science’s most improbable research, The Guardian.

The heat and the hazard: 9 facts about summer health, The Washington Post.

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This is Brave

This is Brave: The Inspiration Behind the Campaign

In 2018, we were introduced to a young girl who inspired our entire organization to “Be Brave”. When her brother Graham was ready to give up after five years of treatments and surgeries for his pediatric melanoma, Quinn reminded him to be brave. He could do it!

Quinn and Graham’s entire family continues to show us, and everyone in the greater melanoma and skin cancer community, what it means to “Be Brave”. Since Graham was first diagnosed, they continue to advocate for education, prevention and research. In fact, they got their start by raising more than $34,000 for cancer research by selling bracelets, which got the attention of President Barack Obama. To learn more about their work visit: www.facebook.com/Grahams-Gift.

This April, Quinn, her mother Cheryl, stepfather Bob, and brothers Graham and Charlie, stopped by the Coolibar offices to talk about the past year and what it has meant to them to “Be Brave”.

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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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