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Skin Diaries

Skin Diaries This is Brave

This is Brave: Bethany Greenway

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.

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Skin Diaries This is Brave

This is Brave: Judy Cloud

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.

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Skin Diaries This is Brave

This is Brave: Janet KJ103

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!

 

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Skin Diaries This is Brave

This is Brave: Heather Van Nest

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.

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Skin Diaries This is Brave

This is Brave: Brian McKenna

Chal·lenge

“A call to fight, as in a battle, a duel, etc.“

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!

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Skin Diaries This is Brave

This is Brave: Cindy Brodie

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.

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Skin Diaries This is Brave

This is Brave: Beth Allgaier

It takes some time to settle into a melanoma diagnosis.

In early 2016, my father had extensive melanoma surgery, which prompted me to schedule a second full body skin exam within the year.  During my exam, the doctor froze a few “spots”, decided to biopsy a few others, and advised me to keep an eye on a small freckle he discovered on my abdomen.  Something about this “small freckle”, and my dad’s diagnosis, alerted me to do more than keep an eye on it.  I urged my doctor to do a biopsy of this “small freckle”.

One week later, I received the call and it was Stage 1A melanoma.  We caught it early.  With the news of my diagnosis, I was instantly overcome with emotion.  I felt totally out-of-control and paralyzed with fear of the known and the unknown.   Thoughts whirled in my head, “I know melanoma is dangerous, and yet, I don’t know how bad mine is? Will it keep coming back?  Will it become something I cannot stop?  Can I still be outside when it’s sunny?” Anxiety and fear suddenly controlled my life.

I learned everything I could about skin cancer and melanoma for comfort and my own peace of mind.  It was my way of controlling a path I had not chosen.  Educating myself with information and accepting the care and advice of skilled and experienced healthcare professionals, like Dr. Atkins at Georgetown University Lombardi Cancer Center, empowered me.  I felt armed and ready to embrace my diagnosis.

Melanoma is not a choice, but living with a positive attitude is.  I parlayed my diagnosis into a career with the Melanoma Research Foundation, where I am passionate about the work we do and as a patient, I know first-hand the difference this organization makes.  In addition, every morning I journal the 3 things I am grateful for and the 3 things that will make my day great. It’s amazing how much this simple routine launches my day in a good direction and reinforces my mind set on gratitude.

I will continue to research melanoma, but it will never consume me or compromise my positivity. I will always rely on the best specialists available to support my treatment and continue to be proactive with my frequent skin exams and sun protection practices.  Being positive makes me who I am, not melanoma.

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Experts Say Skin Diaries

Ian Leonard – Let’s Get Gross

As someone in the public eye, I have never been one to shy away from the camera.  I feel very blessed to be doing work that I love. I feel obligated and truly rewarded when I know I can make a positive difference in our community. I am not being compensated for this but I know this is so vitally important. If we can empower one person and inspire one family to practice better sun safety then my cancer journey will have changed lives for the better. I hope my story, as gross as it may be, will encourage everyone to have their skin checked this year, practice a sun-safe lifestyle and share their own story so we may all unite to fight this ugly battle.

It started with a small pimple on my bottom lip. Almost imperceptible unless you are a manscaping Metro like me. A small pimple that caused inordinate amounts of pain when touched. The dermatologist knew right away. The biopsy confirmed it. Squamous cell skin cancer. Wait, what? It’s just a pimple. It was actually the tip of the tumor buried in my bottom lip. MOHS surgery came two weeks later. Seven MOHS procedures in 6 hours. Then home for the night. Home with a gaping wound where my bottom lip was supposed to be. That was Monday, Plastic surgery was Tuesday. Two days of surgery, 42 stitches and the loss of a third of my bottom lip.

For more on Ian’s skin cancer journey please check out his blog at:  https://ianmn.wordpress.com/

 

This May, we are getting gross. The ugly truth is that skin cancer is not fun or glamorous. We want to share the not-so-wonderful side of what happens after a skin cancer diagnosis. Coolibar’s mission is to keep the world safe from sun damage and we thank each selfless warrior for boldly sharing their story. We hope you bear with us as we share stories to provide awareness, education and spur prevention. We’re among friends–now let’s get gross.

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Experts Say Skin Diaries

Judy Cloud – Let’s Get Gross

I never intended to share my skin cancer journey with anyone outside of my Facebook friend group. Like everyone else, most of my posts depicted a happy moment in time – an event forever captured to share with family and friends to stay “connected.” My skin cancer was so invasive, time-consuming and emotional, I posted it as a warning for the people I love most.  I never wanted anyone to experience what I endured, and continue to live with, from over-exposure to UV rays through tanning bed use and sunburns.  My doctors have told me my skin cancer was largely preventable.  While I have risk factors (blonde hair, blue eyes, freckles, light skin) that I can’t change, over-exposure to the sun and the use of a tanning bed are things that I could change.

Even today, pictures of my stitches, scabs, and scars are very difficult for me to look at and I cannot believe the response they have had across the globe.  Almost daily I have a message on Facebook from someone who has been touched by my story.  Most people want to know if I am doing “ok” and how my life has changed since my skin cancer diagnosis.  The truth is that although I am feeling fine, my life has changed fairly significantly.  Every morning I look in the mirror and self-check my skin for new spots or visible changes.  Given my history and knowing early detection is key for effective treatment, this routine puts me more at ease and reminds me that I am responsible for my own health.  It’s not paranoia that causes me to do frequent skin checks; it’s now a part of my daily routine out of necessity.

Prior to skin cancer, I was a sun-worshiper in my younger years.  What I loved most about the sun was how relaxing the warmth felt against my skin.  And when I was young, kids (including me) played outside for hours each day, without sunscreen. Now I am much more cognizant of the sun.  I am not going to hide from it, but I am much smarter about my time in the sun. Being outdoors reading a book on my porch or working in my flowerbeds is still very relaxing to me, but I have changed my lifestyle habits to include the following:

 

  • Avoid direct sun exposure from 10 am – 2pm
  • Wear sunscreen daily; I have sunscreen in the make-up I apply every morning
  • Skin checks every 6 months by my dermatologist

 

Sometimes the Facebook message I receive is from someone who is sharing their own skin cancer story with me.  They tell me they are grateful to know they are not alone.  In all honesty, I have found skin cancer to be a lonely cancer.  We are diagnosed, the doctor treats us and we are sent on our way.  I have been unable to locate a skin cancer support group, which I believe is greatly needed.  When I was growing up, our generation was not warned about the damaging effects of tanning beds, and a sunscreen beyond 2-4 SPF was not available.  It is hurtful to hear that I (along with other skin cancer survivors) have “brought this on myself” from strangers and even family members when truly skin cancer awareness and education was unheard of when I was growing up.  My mission today is to raise awareness so people don’t have to go through what I have gone through. We now have access to better information, and as the saying goes, knowledge is power.  I would also like to create a community of support for those of us who are skin cancer survivors so nobody ever feels like they are alone.  I will continue to share my story and encourage everyone to do the same so we can save lives.

This May, we are getting gross. The ugly truth is that skin cancer is not fun or glamorous. We want to share the not-so-wonderful side of what happens after a skin cancer diagnosis. Coolibar’s mission is to keep the world safe from sun damage and we thank each selfless warrior for boldly sharing their story. We hope you bear with us as we share stories to provide awareness, education and spur prevention. We’re among friends–now let’s get gross.

 

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Experts Say Skin Diaries

Summer Sanders – Let’s Get Gross

Growing up in the California sun, I was outside every day of my life swimming. I loved the water.  Formal swimming lessons began at age 18 months and I was swimming competitively by the age of 4.  Later I swam for Stanford University in Palo Alto, CA and eventually won 2 gold medals, a silver and a bronze medal at the 1992 Olympic Games. I never thought anything of the endless hours of the sun beating down on my skin while I practiced my sport year-round. For me, sunscreen was used for “vacation sun” because I never wore sunscreen during my daily swim practice routine. I do not recall being sunburned as a child, but I know I was very sun-tanned, especially during the summer months.

I was blindsided in 2014 by my first melanoma diagnosis from my dermatologist, which resulted from a mole that had been recently removed from my calf. Swimming was my life and my love, it was who I was. After this diagnosis, my relationship with the sun changed. I became hypersensitive to skin cancer and to the sun. Being outside and in the sun was something I loved so much, but then I would feel the sun and it bothered me.  My belief is my melanoma was attributed to prolonged and consistent exposure to the sun, specifically the harmful UV rays I’d been exposed to for many years due to my swim training.

While I am grateful for the doctors and surgeons who have helped me with my skin cancer journey, I have learned to become more vocal and grown stronger by becoming my own health advocate.  The little black dot on the back of my arm was something my doctor was not initially concerned with, but the nagging feeling in my gut told me it was something that should be biopsied and I had my doctor remove it.  That little black dot turned out to be my third melanoma.  Early detection is paramount when it comes to skin cancer treatment. My goal is to inspire friends and strangers to become their own health advocates.  Hearing that someone went their dermatologist after a self-check discovery of a suspicious mole is why I continue to share my story.  In support of skin cancer awareness month, I encourage everyone to become their own health advocate and make an annual appointment to have your skin checked by a dermatologist today. It may save your life like it did mine.

This May, we are getting gross. The ugly truth is that skin cancer is not fun or glamorous. We want to share the not-so-wonderful side of what happens after a skin cancer diagnosis. Coolibar’s mission is to keep the world safe from sun damage and we thank each selfless warrior for boldly sharing their story. We hope you bear with us as we share stories to provide awareness, education and spur prevention. We’re among friends–now let’s get gross.

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