When our son Carter was 11 months old, we found out that he had Oculocutaneous Albinism Type 2. (Or OCA2) What that means is that he has less pigment in his eyes, hair, and skin. So basically, it’s the reason for his insanely cute blonde hair and eyelashes. But it’s also why we made protecting his skin a main priority. After the diagnosis, we soon learned that Carter’s chances of getting skin cancer were greater because of his Albinism. That word. Cancer. As parents, hearing that was terrifying, but it also made us want to do whatever we could to keep him (especially his skin) safe.
When we found out about this, we were a month away from going on our first family vacation to the Virgin Islands. We met with a dermatologist who stressed the importance of sun protection. He talked to us about sunscreen and told us not to forget areas like the scalp and the tops of Carter’s ears. I immediately began searching for the perfect hat for him to wear. We needed to know that our baby was going to be completely protected. Not only on the beach, but anytime that our family ventured outside. We didn’t want to take any chances of him getting the slightest sunburn. My mother in law was the one who discovered Coolibar, where we found so much more than a hat. We found swimwear and clothing, but most importantly we found a peace of mind.
5 years later, we are still using and loving our Coolibar gear. Not only do we have the Albinism to worry about, but our son was also later diagnosed with Autism. Due to both the Albinism and the Autism, Carter struggles a lot with light sensitivity. Being in the bright sun for too long can really shut him down and cause him to get headaches. Therefore, Coolibar’s Kids All Sport Hat is a favorite of ours. Not only does the bill of the hat help shield his eyes from the sun, but the flap protects his ears and neck from potential burning.
While we still use sunscreen, it’s hard to always remember to reapply as often as is needed. Coolibar has taken the pressure off, by providing additional UV protection. It’s nice to know that there is a product out there that meets all the needs that our boy has. When he initially got the diagnosis, we were afraid he wouldn’t get to experience the outdoors as much as we would like him to. Now, two of Carter’s very favorite things are water and adventures. Thanks, Coolibar, for allowing us to still have these experiences, worry-free.
My name is Lisa Pace. I’m a college basketball coach and a licensed massage therapist. I found out I had skin cancer at 23 years old. I had just gotten my first division 1 college coaching job.
I was talking to my mom one night about my job and all the responsibilities, and in conversation she told me now was a good time to see the doctors so they have a baseline of my health moving forward.
So, I made an appointment to a dermatologist. They did a skin check and found a couple places, small light brown spots, that they wanted to biopsy. They did the biopsies and told me they would call and let me know the results. I figured since I had fair skin, red hair, and freckles, this was probably common. I didn’t know. I think at my young age I was trying to rationalize and justify why I had skin cancer. Later on, I found out anyone can get skin cancer.
It was time for recruiting. I couldn’t wait! July was finally here and I got the opportunity to travel from state to state, gym to gym watching young women play basketball. I was headed to Las Vegas. This was a huge tournament. I sat beside the legendary Pat Summitt and watched some games, and went from gym to gym all day. I couldn’t believe this was my job.
Later that night when I returned to the hotel room, I checked my messages. The dermatologist had called and said they had the results. When I spoke to them they said my biopsies came back suspicious, that they were skin cancer, possibly melanoma, and that I needed to come in and let them take more out.
I remember thinking, the last time I was at the dermatologist, it was a little bit of numbing medicine, a small cut, and a band-aid. There is no way I am leaving Las Vegas to go back and let them do that again. I am recruiting. I am watching future division 1 players. It can wait. So I waited. I finished up recruiting in July and made an appointment when I got back home.
This time it was different. I went to a specialist for a second opinion. They went back in the same spots, but took a huge amount out of my leg. It was my right upper thigh and my lower calf. I had stitches, bandages, bleeding, bruising, swelling, and I had crutches. Well, that was definitely different. I knew I would have these crutches for a day or so but as a former athlete, those things had to go. I didn’t have time to be “injured.” But the good thing was, they said they got it all. This meant no more skin cancer, so I thought.
It took a while, but I healed up fine. I continued to coach, and I continued to tan. Tanning beds were popular. I had tanned a lot in college. There were all kinds of promotions with free lotions, buy 5 visits get 5 free, one month unlimited, etc. I enjoyed going. As I got older, I didn’t go as much. However, the damage had been done and those times I was still tanning was just adding to my future surgeries. I had no idea that the tanning bed was causing so much damage to my skin. I never saw any tv commercials warning about tanning bed use and skin cancer, there was no social media platforms warning me of the danger and consequences. I don’t remember much being said about it at all in the beginning.
One morning I found this white spot on my left cheek. I watched it for a couple weeks and noticed it was getting bigger. So I went back to the dermatologist. This changed my life. They took a huge chunk out of my face. I was devastated. I couldn’t look at myself. I spoke with my doctors and after much discussion, I found out that all those times going to the tanning bed had caused me to have skin cancer. This was the first time anyone had discussed this with me. Remember, this was almost 20 years ago. I had done this to myself. I questioned every time I had ever wanted to go tan. Why did I do this? I didn’t lack self-confidence, I just wanted to have a bronze look and to “fit in.” I knew better than to “follow the crowd.” I was supposed to be a leader, to set examples for others. Now look at me. I was so angry at myself. And this was just the beginning, more and more surgeries would come.
Fortunately for me, I was coaching college athletes and we know we have a choice every day. When we wake up we choose to have a positive or negative mindset. We choose to win the day or wallow in self-pity. We outwork our competition. And skin cancer was my competition.
Fast forward almost 20 years, I have had 86 skin cancer surgeries. My skin cancers have been basal cell, squamous cell, and melanoma. I won’t tell you that I was positive every minute of every day. The mental aspect after surgery can be draining. I did have moments when I didn’t want to get out of bed, when I would look at all my scars and get discouraged. I dreaded looking in the mirror because I thought I would find a new skin cancer. But those moments didn’t last long.
I know I’m going to win this battle. I know I do all the right things as far as protecting my skin and getting skin checks so I am confident in knowing skin cancer has met its match. It’s going to be a battle with me. And I want people to be proud of their own skin. I own my scars now. They have given me wisdom, they motivate me, and they remind me that even though I was knocked down 86 times, I got back up 87 times.
I can only hope my story will inspire someone else to make the necessary changes in their life to protect their skin, to get regular skin checks and to win the day.
At 26 years old, Grace Pophal is a daughter, sister, niece, partner and friend. A lifelong competitive swimmer, she entered Ohio State University in the fall of 2010 as a Division 1 swimmer with a lifetime of possibilities ahead of her.
During her time at school, she struggled more than ever and no one could figure out why. In October of 2015, they received the answer. After experiencing prolonged and severe back pain with migraines, a doctor’s appointment was made and x-rays were performed. Within a week, Grace was diagnosed with Stage 4 Metastatic Melanoma. Five tumors were found in her brain, while her back pain was caused by a tumor on her lung so massive that it was putting significant pressure on her spinal cord. Tumors were also found in seven of her other organs. Subsequent treatment with radiation caused swelling, and Grace underwent emergency brain surgery to remove the two largest tumors causing pressure on her brain. By November 2015, Grace’s future looked hazy.
Moving forward, Grace is still here and continues to fight every single day. She was treated with an aggressive form of targeting pills and has been hospitalized several times with side effects, but her tumors have all been significantly reduced in size. A successful second brain surgery was performed in June 2016 and she would shortly after begin her first course of Immunotherapy treatment.
Her journey has been filled with blood, tears, heartache, celebration, a pup named “Otis”, hospital socks, ice cream binges and too many body scans to count; and there is still a long way to go.
Today, Grace has no active tumors in her brain, is a yoga teacher and receives immunotherapy treatment every other week. She’s faced every challenge this diagnosis has given her with unbelievable courage, strength, humor and determination, and continues to fight for her future.
I never thought I would hear the words that I had been diagnosed with melanoma, the deadliest form of skin cancer. And I admit, the first thing I did was cry. And then, I felt really sorry for myself. It took some time but then I realized that as a wife and a mother, I had to be strong.
But it is difficult to be strong when one feels incredibly vulnerable. My diagnosis was the first time I confronted my own mortality. It was also the first time I think my children did as well.
“So, wait, you have cancer?” asked my 8-year-old daughter Riley.
“Yes, but we are going to cut it out!” I replied optimistically.
“Is there any chance you can die from the surgery?” asked my 9-year-old son Henry
“I’m absolutely not going to die,” I assured him. “I mean, eventually I will. But not from this surgery.” When I left my daughter’s bedroom I felt horrible for sharing with them that I was having a relatively minor surgery. There was no need for me to worry them.
But I was scared and, perhaps selfishly, really appreciated their deep concern. Over the next few months after the surgery, my daughters, Riley and Grace, took turns at putting a healing ointment on the scar on my back, which I couldn’t reach.
“Oh mom, it looks soooo much better today,” my darling Riley would say, providing such positive feedback.
My dermatologist, Dr. Elizabeth Hale, made the diagnosis early. I had the surgery January 2017, which included a 3-inch incision and about 25 stitches. The scar has healed, but is still quite visible. It is a reminder that early detection saves lives.
Part of my preventative care now means that I return to Dr. Hale every three to four months for full-body checks to make sure there’s nothing out of the ordinary. Each visit requires the strength to confront the scary possibility that she will find another malignant mole.
The reality is that I can prevent a truly devastating diagnosis now with frequent check-ups. The harder truth I’ve come to learn is that I could have prevented the cancer altogether.
“More people develop skin cancer because of tanning than develop lung cancer because of smoking,” Dr. Hale told me. Just think about that.
Well, I am doing more than just thinking about it. I’m telling my children that while skin cancer is the most common form of cancer, it is also the most preventable.
I grew up in San Antonio, Texas, where jumping in the pool wasn’t just leisurable, it was one of the only ways to cool off! With the temperature pushing 100 degrees in the summer, we spent hours in the pool, many times without sunscreen. In high school, I would visit a tanning salon during the winter. I confessed this history to Dr. Hale who told me, “People that indoor tan before the age of 35 years have a 75% increased chance of melanoma.”
I know I made some bad choices. Those attempts to get a tan likely led to my cancer. But by sharing this with my children and others, I hope that my story can help all of us learn some valuable lessons and have the strength to embrace prevention.
The word I’ve chosen to represent my melanoma journey is Aware.
My name is Bethany Greenway, I’m a stay at home mom to two amazing little girls. I was diagnosed with stage 3a melanoma August 2016. I wasn’t surprised about the diagnosis because my mom had melanoma at my age, it was just my body’s genetic timer going off.
I had a spot on my forehead that looked like a light brown liver spot, it made its appearance while I was pregnant with my second daughter. I went for my annual skin check when my little one was 9 months old, and got the all clear. I thought nothing of the spot and chalked it up to hormones until it grew a mole and the mole started to ache.
I went to see my dermatologist who sent me to a plastic surgeon for a biopsy. Three weeks later I got the call from my surgeon, I had two types of melanoma: desmoplastic melanoma, which is very rare, and regular melanoma surrounding it.
At this point, I’ve had two surgeries to remove the cancer and the nearest lymph node removed, which tested positive for melanoma and that put me at stage 3a. With melanoma being such an aggressive cancer, I had to begin treatment to prevent recurrence. I started immunotherapy October 4, 2016 and won’t be done with it until October 2019. The type of immunotherapy I’m on is called Yervoy, and it has a whole host of nasty side effects. Reading the list of them is worse than the drug ads you see on tv. I’ve been lucky in that department, so far, just fatigue and itchy rashes for me. After my first four infusions, I did radiation therapy for six weeks on my head and neck because this was the possible path the melanoma traveled in my body.
Most of what cancer patients go through is mental. Yes, we endure so much physically, but once the hard stuff is over we are left with merely a shell of what once was. It also teaches us a powerful lesson in self-awareness and how to truly listen to our bodies. Discovering the new “normal” during treatment and feeling your body change in ways that you never thought possible is an eye-opening journey. It tunes you into who you are at your core.
Following the surgery on my face, I felt overwhelmed by the change. This wasn’t an optional cosmetic or aesthetic surgery, like a nose job or breast augmentation, this was done to save my life. It was also 100 times more obvious. How do I handle this? I kept asking myself over and over. So I chose to show my face to the world and show them how scary skin cancer can be and started my Melanoma Photo Diary on Facebook. If I can reach just one person and inspire them to go see the dermatologist and get that biopsy done, then that’s what I need to do. So I did. I took pictures and wrote daily. I still do. Mostly, I keep the diary so I can enjoy spending time with friends and family and not have to give them a medical update every time I see someone new.
Why am I telling you my story? So you can learn from me and to raise awareness about the black beast we call melanoma. Listen to your body and pay attention to the changes it makes.
Most of my life, I would not have associated the word ‘passionate’ with skin cancer, but here I am, passionate about skin cancer. Sounds odd, I agree. How did that happen, you ask? The answer is this: I have had skin cancer for over twenty years, and it won’t go away. I have had numerous surgeries to remove cancerous areas. Each day I am looking in the mirror, checking for new areas. And each time I find a suspicious place on my skin, it causes anxiety.
The truth is, skin cancer can largely be avoided by practicing good sun habits – protect your skin from over-exposure to the sun, use sunscreen, wear hats and sun protective clothing, avoid being in the sun during its strongest hours, and above all, do not use tanning beds. Yes, there can be a genetic factor to skin cancer, but largely, it can be prevented. And this is why I am passionate about raising skin cancer awareness. When I was growing up, there wasn’t much, if any, information about the dangers of overexposure to the sun. Kids played outside all day long. Sunscreen, if we had it, was SPF 2 or 4. Sunburns were common for fair-skinned people like me. Then along came tanning beds, which were introduced to us as being much safer than the sun (and which we now know is not at all true). Now we have more access to information. Now we see the results of generations of people who had over-exposure to the sun and went to tanning beds. Now we know better, and now we can do better. I don’t want others to have to go through what I’m going through, and helping to raise awareness about skin cancer is high on my priority list.
I must admit, being an advocate for skin cancer awareness at times puts me out of my comfort zone. I’m not used to having my life, complete with photos of my surgical wounds and healing process, ‘out there’ for all to see. But I need to be brave and continue to tell my story. And you as well, dear hearts. Be brave. If you are battling skin cancer, keep fighting. Keep telling your story. Keep raising awareness. And if you are someone who isn’t practicing the best sun habits, be brave. It’s okay to not have the ‘perfect’ summer tan. It’s okay to not go along with the crowd in thinking that you have to have a tan to fit in. One story at a time, one person at a time, we can raise awareness, passionately and bravely.
I’m “that girl”. The girl who begged her mom to sign a permission slip so she could use the tanning bed at 16. I’m the girl who would proclaim that “tan fat looks better than white fat” as she would hop into the tanning bed before heading out on summer vacation. I’m the runner girl who trains and runs half marathons without wearing a hat or sunscreen. I’m also the girl who never thought skin cancer would happen to her. So when I was told that I had basal and squamous cell skin cancer on my nose, I was shocked to say the least. I didn’t even have a spot that I thought looked suspicious!
Before I knew it, I had a dime size hole in my nose and I was talking to a plastic surgeon about the procedure to pull a vein from my forehead to feed a skin flap that would be placed on my nose. I would have two surgeries within a month. One to create the forehead flap that would remain in place for three weeks. The other surgery would be to fix all the damage they were about to create.
Every doctor I saw during this process reassured me that it was “just basal cell”. Those words, “just basal cell” led me to create a Facebook live video showing off an up-close look at my forehead flap because “just basal cell” sure did mess up my face.
The hard reality that no matter the type of skin cancer, it’s impact will change your life. Soon I was receiving messages from all over the country from people who went thru the exact same procedure. People who didn’t leave their house for three weeks because of the way they looked. People who felt all alone during their entire process. They told me that my story brought them comfort and that they admired me for being brave. Let me tell you this, I didn’t put my story out there because I was brave. I put my story out there because I was loved. I was loved by so many people that I didn’t know I should hide out. I was showered with the type of love that pulls you out of a dark valley and places you high on the mountain top… Where you’ll be sure to wear sunscreen! Since I was so loved, it was my duty to share that love with others. Love allows you to be brave, be strong, be vigilant, be a light… BE LOVE!
Hearing the words “You have melanoma, the deadliest form of skin cancer” shakes your entire world, no matter your age. Everything seems to stop as you absorb what it means, what’s at stake and how your life will change.
I am embarrassed to admit a skin cancer exam was not top of mind when I was diagnosed with melanoma at 29–years-old. I was working as an investigative TV reporter and interviewing a dermatologist about an unrelated topic for a local CBS TV station in Florida. He pulled me aside to stress that with my fair skin, multiple moles and family history, (my grandfather had been diagnosed with melanoma) I should schedule my first skin cancer exam. I honestly felt I was “too busy” to take the time to schedule an annual skin cancer exam. I reluctantly followed up and quickly learned that a biopsy of an unusual spot on my stomach was in fact, stage one melanoma.
This wake-up call dramatically changed my entire life as I learned the likelihood of recurrence is high. I didn’t want to waste my life worrying and waiting. I was motivated to stay healthy! I put my investigative reporting skills to work to find the best ways to boost my immune system and protect my skin—those are two things I can control.
Melanoma motivated me to overhaul my entire diet and focus on eating fresh unprocessed foods that strengthen my immune system. Garlic, turmeric, fish oil and every green vegetable imaginable are all a part of my new lifestyle.
My melanoma diagnosis also motivated me to find the safest and easiest way to protect myself from the harsh Florida sun. That’s how I discovered Coolibar’s UPF 50+ thin, comfortable sun protective clothing—my top choice for protection.
Today, 16 years after my melanoma diagnosis, I feel better than ever! I have a 4-year-old son and 7-year-old daughter, who my husband and I are proud to say know about the importance of sun protection.
Melanoma has motivated me to focus on what’s important in life. I have simplified what I can control, cutback on a demanding career and learned to appreciate everyday moments with my family.
I hope you will be motivated to make your annual skin cancer exam appointment. It just might save your life the way it saved mine.
Heather Van Nest is a former evening news anchor for the CBS affiliate in Tampa, Florida, natural health advocate and proud producer of the award-winning documentary, “Risky Rays: Don’t Get Burned.” The skin cancer awareness and prevention program aired on the local CBS TV station and was donated to the local school system.
It was the spring of 2014. I remember my doctor escorted me past the examining room, straight back to his office, where he closed the door behind me. I may not be a card-carrying member of Mensa International, but I knew something was up. He opened his laptop and started explaining the results from the biopsy he’d taken from my body three weeks prior. Unfortunately, I read three paragraphs ahead of my doctor, and scanned two words that took my breath away, “malignant melanoma”.
I didn’t hear anything he said after reading that.
Fast forward to February 2017. I was diagnosed with a very rare, infiltrating, aggressive basal cell cancer, whose “fingers” wrapped around the nerves in my face and were headed towards my brain. To make matters worse, it metastasized over my entire body. In addition to the aggressive basal cell cancer, melanoma was found on my back. Cancer had challenged me to a fight.
I accepted the challenge. I wasn’t going to fight cancer, cancer was going to fight me! Instead of “why me,” I embraced “try me” and braced myself for the fight of a lifetime.
In life, you can be the bug or the windshield. I challenged myself to be the windshield. I also challenged myself to share my cancer journey openly, utilizing my public image as a former radio/tv personality, to help bring awareness to skin cancer prevention. I challenged myself to be a loud voice in St. Louis, Missouri, to raise money for skin cancer research with the hope that one day we find a cure.
After nine surgeries in the last 13 months (including a 9+ hour facial reconstruction), over 400 stitches, radiation, chemo, physical therapy and occupational therapy, I’m here to tell you that I am on the road to recovery.
I challenge all of you to be kind, stay humble, do more than is expected, give more than you take, dream big, make a difference in this world and GET REGULAR SKIN CHECK-UPS! Your Vibe Attracts Your Tribe!
My journey began with a very small, brown spot on my nose that looked like an age/sun spot. My “spot” did not itch or burn and was asymptomatic, other than the fact that it would not go away. As a former sun-worshiper, I was no stranger to these “spots”, but I put off seeing my dermatologist until AFTER a holiday trip to Mexico because I didn’t want a small scar on my nose for the trip.
My biopsy indicated the presence of melanoma, but early stage 1. Within a couple of Weeks, Dr. Jerome Potozkin performed the surgical procedure to ensure all margins were clear. Looking at my face right after the procedure made me feel scared and anxious, and wondering if I would ever look the same. The procedures the doctors were discussing for reconstruction sounded barbaric, and I found myself wondering how such a small spot could cause such major surgical procedures to repair. But I knew the journey had just begun.
Seven days later, I went under general anesthesia for the 1st of several surgeries. Dr. Jonathan Sykes, my plastic surgeon, utilized cartilage from my ear and a skin graft flap from my forehead to rebuild my nostril. My “trunk” provided a live feed to help regrow my nose and allow the cartilage to settle into the open space. This “trunk” remained on my face for 3 weeks, which was painful and humiliating. I went back to my doctor every 2-3 days to ensure there was no infection and to clean the wounds. I was terrified to leave the house during this time. After the removal of my “trunk” and 9 months of healing, I went back to see Dr. Sykes for another reconstruction.
The entire process, from the “sun spot” on my nose to the photo you see here, took one year. I am grateful to Dr. Potozkin for the early detection. It could have been so much worse. I am grateful to my plastic surgeon, Dr. Sykes for reconstructing my face. I am grateful to be sharing my story with you today. If my story motivates you to call your board-certified dermatologist today to make your annual skin exam appointment, then my heart is full.
Cindy has been cancer free for 2 years and continues to have her skin checked every three months, as early detection is key.