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Diagnosed at 25, Building a New Life in the Sun

Renee Burch Coolibar Melanoma Survivor

By Renee Burch

Note: Each May, Coolibar highlights melanoma survivors to call awareness to the dangers of melanoma. Here, Renee tells her story.

I used to think skin cancer was something that happened after decades of excessive tanning (not to young, otherwise healthy 25-year-olds) or to those living in sun-laden states (not in places like the perpetually-rainy Northwest).

Unfortunately, in March of 2013 I was diagnosed with malignant melanoma on my left thigh. And I quickly learned that, like most other young adults, what I thought I knew about the dangers of the sun and skin cancer was way off.

About Melanoma

Unlike other types of cancer, a la pink ribbons and saving the ta-tas, most people know very little about skin cancer. And they seem to know the least about the most deadly type of skin cancer: melanoma. Even more concerning is the fact that melanoma is the second most common cancer in young adults – and the number of yearly diagnoses is increasing, particularly in young women.

Part of what makes melanoma so deadly (and different from other types of skin cancer) is that it can quickly spread, which is why yearly screenings for every person, young and old, are necessary for prevention and early diagnosis.Renee Burch - Coolibar

The Diagnosis

Let me tell you, it has not been easy – my life was turned upside down the day I found out I had malignant melanoma at the age of 25.

I remember being very confused. I was unsure what it really meant. I didn’t realize right away that having melanoma was going to be the basis for rebuilding my routines – from hiking, athletic events and boating, to walking the dog, looking forward to traveling and starting a family. And, it took me a while to figure out how I was going to continue to do all these things while being “safe” in the sun.

For a while I tried to justify why I got the disease and other people I knew who were my age did not. “Back in the day” I always kept a healthy tan (turns out, it wasn’t healthy after all!), but I didn’t burn often, so I figured I was lucky to tan easily, and didn’t worry much about skin damage.

I shelled out extra money for the tanning beds I was told were the best “because they didn’t have the bad UV,” or because artificial tanning was beneficial to increasing vitamin D absorption.

My parents vaguely warned me about the dangers of overexposure to the sun, but never had any type of skin cancer. So, I lived life under the veil of belief that skin cancer wouldn’t affect me. My uncle had Stage IV skin cancer more than 20 years ago. I figured if he had it, removed it and has never had a reoccurrence, that’s how it worked: get skin cancer, get it removed, and move on.

I spent many months feverishly researching online, reading books, talking to other survivors, and testing a myriad of sunscreens (a trial-and-error that often left me covered in a ghostly white sheen). I completely switched my skin products, certain foods and supplements — everything in my daily life was impacted by melanoma in one way or another.

Renee Burch - Coolibar Melanoma Survivor

I found it difficult to decipher how to lead a normal life versus how to lead a normal life with melanoma. I struggled with the fact that the damage I had previously done was irrevocable. Right now, I have a one in 10 risk of developing malignant melanoma again. If I don’t take care of myself I could be a one in five, or a one in three. But the best I’ll be is a one in 10 risk.

And, I could not possibly spend life holed up indoors, or wearing thick and bulky, dark-colored, long-sleeve clothing on sunny summer days.

After months of angst, I realized I had to stop worrying about tomorrow’s challenges, and take charge. I was only 25. I want to travel, I want to have kids one day, and it was unrealistic that this disease was going to stop me from getting outside and enjoying day-to-day activities. I was determined: melanoma would not control my life. I was going to control it.

A New Life in the Sun

Thankfully, after recently celebrating my one-year melanoma free anniversary (a really big accomplishment for me!), I find myself achieving peace of mind with my diagnosis. I am continuously learning how to navigate life in the sun, without hampering my previously active and outdoors lifestyle.

I have vowed never to purposely seek out a tan – whether in the summer sun or in a tanning salon bed – and I am an advocate to my family and friends about practicing “safe sun”. Perhaps most importantly, I seek shade whenever possible and limit my sun exposure, particularly during peak hours between 10 am and 4 pm (even in the winter or on overcast days).Renee Burch - wears Coolibar

Without UPF clothing, I know my path to a healthy balance would have been much more difficult. I have sun protective clothing for nearly every scenario. In fact, I have a special dresser drawer designated specifically to it! I have UPF 50+ baseball caps for hiking and biking, sun hats for summer boating and leisure, beach cover-ups, running leggings, swim skirts, and a variety of other pants and shirts for whatever activities life throws my way.

I am a die-hard loyalist to my favorite brands of sunscreen (and let me tell you, physical sunscreen that isn’t pasty white sure is hard to come by). I seek out the shade, but when life happens and sun exposure is unavoidable, I know I am “safe” because of my go-to sunscreens and sun protective gear.

I continue to advocate and show others by my example the ways in which it is possible to practice safe sun: apply SPF of at least 30 and reapply regularly, and fake a glow that is actually healthy. (Believe me, self-tanners have come a long way since the days of streaky orange hand prints!) I wear my scar with pride. It’s a 3-inch scar on my thigh. People see that and say: “Wow that looks serious, what happened?” I tell them: “It’s from melanoma, and that is serious, but this scar could be worse – it could be on a more delicate area of the body, like the face.” That comes as a shock to most people.

If you do nothing else, see your dermatologist once a year. With my diagnosis, I visit mine every three months. But if you notice any changes in your moles, even freckles, get them checked out immediately!

Melanoma is a lifelong battle. One that is not, nor ever will be, easy. But I am fortunate to have caught mine early, to have supportive family and friends, and to have access to an increasing range of sunscreens and sun protective clothing.

I also feel optimistic that one day skin cancer will be as well-known as other cancers. With the support of Coolibar and other skin cancer advocates, I imagine a world where melanoma 5Ks and fundraisers, mobile mole-checks and UPF clothing are commonplace.

 

Renee Burch is a native of Seattle, Washington, and serves as an example of youth overcoming fear. Renee has created clear messages about melanoma, including the misperceptions about its seriousness, the dangers of indoor tanning and the necessity to reach people while they’re young about ways to prevent it. Renee is a proponent of dressing “cute and sporty,” and considers Coolibar a tried-and-true sole resource. She owns swim leggings, sun hats, half-zip shirts, jackets and sun hats, and more.

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It’s Melanoma Monday. How Much Do You Know?

Coolibar - Knowledge for Melanoma Monday

As it does each year, the American Academy of Dermatology has designated the first Monday in May as Melanoma Monday®. This chance to promote melanoma awareness and prevention is important to us at Coolibar, because we meet people who live with their melanoma diagnoses every day – and because we meet people who are not familiar with melanoma at all.

Knowing about melanoma can save your life – and sharing what you know can save others! Here is a short list of what we’d like people to understand about melanoma.

Melanoma is the Deadliest Form of Skin Cancer.

Some people understand skin cancer treatment as “you find a mole on your skin, you have it removed, that’s it.”

In fact, the majority of melanoma cases involves wide-excision surgery and a lymph node biopsy to determine if the melanoma has spread to other organs. This may be followed by a regimen of immunotherapy, chemotherapy or radiation treatments. In all cases, the possibility of recurrence must be carefully monitored. For melanoma survivors, the letters NED (no evidence of disease) become vitally important for many years.

Melanoma Affects Young People Too.Melanoma affects young people - Coolibar

The AAD says that melanoma is the most common cancer for young adults 25 to 29 years old, and the second most common for adolescents and young adults 15-29 years old.

It’s Easier Than Ever to Prevent Melanoma.

The single best way to prevent melanoma and other skin cancers is to limit exposure to the sun. But some people think that means giving up their favorite activities. Instead, here are a few simple tips to keep you active and healthy:

  • Apply a broad-spectrum sunscreen of at least SPF 30, and reapply after swimming or strenuous activity.
  • Wear sunscreen every day – up to 80% of the sun’s ultraviolet rays can reach your skin even when it’s cloudy.
  • Seek shade when necessary.
  • Wear sun protective clothing!

Meet Some Amazing Melanoma Survivors.Coolibar Melanoma Survivors May 2014

Each week during Melanoma/Skin Cancer Awareness Month, we’d like you to meet several very courageous people who can tell you about melanoma much better than we can. Their stories are powerful, personal and inspiring (and, unfortunately, similar to many others from people all over the world). But each one will change the way you think about your health and your life.

We’ll introduce the first of these people on Thursday, May 8.

In the meantime, help us spread the word about melanoma!

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Success Stories Wellness Warriors

Melanoma Survivor Timna

During Skin Cancer Awareness Month, Coolibar invites skin cancer survivors to share their stories in their own words. Hope, determination and drive to educate others play a major role in these individuals’ lives. Skin cancer doesn’t discriminate, it can happen to anyone. Prevention and early detection can be life saving! We hope you share these stories with your friends, family and colleagues. Be SunAWARE. Read Timna’s story.

I have been asked by many people about my story as it relates to melanoma, a disease that has changed me from the moment I got the call with my first diagnosis.

Here it is, in brief, with pictures to help…

I was born a baby with fair skin.

I grew up with hippie parents in the late 60s and early 70s. We lived in New Mexico and California, spending a LOT of time outside, dressed in minimal clothing.

I spent my time with my mom in Pacific Palisades, my dad in Venice, and my grandmother (Nonnie) in Marina Del Ray…on the beach.

Sunscreen was not a thing then…at lease that I knew of. It was all about just being outside, in nature.

(I know, weird that hippies let their kids play with toy guns…but they did)

Fast forward (but NOT to forget the 20+ years of sun loving, laying out, skin burning, beach going, roof-top pool visiting, and much more)……

At 38, I was sitting on my bed, studying the bottom of my right foot. Yes, I can see the bottom of my feet. Maybe it’s the yoga, but really I think it’s just my body…because below you will see me, at age 4, eating my foot…..

So, yeah…I was inspecting my right foot and saw a TINY black speck. I actually thought it was a baby tick, and with my fabulous surgical skills, I proceeded to remove the “tick” with a cuticle clipper…GROSS, I know. It was done. The “tick” was out and life went on….until a few weeks later while catching another good look at my foot, I noticed this black speck was back. Somewhere in the back of my head I remembered hearing the words, “If you have a freckle on the bottom of your foot, it is not a good thing.” And I knew I needed to get to my dermatologist ASAP.

I got in as soon as I could, seeing a physicians assistant, who removed the dot and told me to have a good weekend.

Over a week later, a nurse called me. She starts talking to me….about melanoma…my oncologist (I DON’T HAVE AN ONCOLOGIST)…my appointment for blood work and chest x-rays at UNC…surgery…cancer center. I left my body at those words. And when I came back, I told the nurse she needed to stop talking because I was not hearing her, and that I needed to get a pen and paper to write all of this down. This is not real! It’s JUST SKIN! Why x-rays and surgery and new doctors, etc? I mean, it is just about skin, right?

It was then I quickly became an expert on all things melanoma. I knew that when my oncologist LOUDLY stated to me, “THIS IS SERIOUS!” that my life was changing fast and forever.

Fast forward (but NOT to forget the dermatology visits every 3 months with multiple biopsies, most of which coming back severely atypical and needing further excision, the anxiety, fear, post traumatic stress, obsession with checking my moles all day long, 3 months for the hole in my foot to close after the wide excision, and the incision in my groin to heal after the lymph node biopsy, and more fear, and more terror, and, and, and……….oh, and practicing safe sun in all ways)

Three years later (no, I didn’t reach the 5 year mark. so bummed!) I have my second melanoma. This one is on my right forearm, found at one of my regularly scheduled dermatology visits. Back to fear, back to crazy, back to wide excisions.

And then, a few months ago, I started seeing flashes of light in my left eye. So I decide to study my eye ball, something I had never done in the past (surprising!). And sure enough, I see THE TINIEST dark fleck on the white on my eye, and I sink into melanoma fear knowing that tomorrow I will be in my eye doctor’s office no matter how booked and busy she is.

My eye doctor tells me that what I had found were just a few pigmented cells. Well, after you have had melanoma, the words PIGMENTED CELLS don’t jive well, no matter how few there are. She tells me it’s nothing, but that if I want to see an eye tumor specialist because I’m “so anxious”, she would make the call. OF COURSE I WANT HER TO MAKE THE CALL!

After weeks of waiting to get in with the eye tumor guy, and after a FIVE (yes, FIVE) hour appointment of dilation, pictures, exams, different residents, I finally got to see THE specialist, who tells me this: “The reason you came in here today is actually fine, but right next to it is something called Primary Acquired Melanosis, and because of your history with melanoma, we are not going to wait and watch, we need to biopsy it and freeze around the area.”

Um…with shock having taken over, I blurted out, “ARE YOU KIDDING ME?” The thought of a portion of my eye ball being cut and frozen and…It’s all just too much. I break. I break down right there with this nice eye tumor specialist and his nurse. I just sob.

When I went for my 6 week post-op visit I was overflowing with joy to be given the green light on returning to contact lenses. Ready to run out of the office and home to my little, delicate, disk-shaped, polymer wonders that I have missed so much. I was told that I would need to be refitted in my left eye for lenses…because my eye is forever changed.

A new set of eyes? Hmm. Yeah, I can see that. A piece of eye taken out = shape changed forever. And it was then I realize that not only is my eye changed forever, but I am.

And so it is with these experiences, and this new life, that I hope to raise awareness and help to educate others about what might just be something they can hear about rather than experience it firsthand.

As the summer is fast approaching, I am now in planning mode for a 7 week trip to Europe (to include MANY beaches)!  Here is how I do this with melanoma on my mind…I gather up loads of sunscreens, hats, UPF clothing, parasols, etc…and GO.  You can check out my packing list on Respect the Rays!
Wherever you go, you can do it with sun safety in mind!  Whether it’s the pool, the park, the beach, an island, whatever, always practice safe sun!

-Timna
Founder of Respect the Rays

“Out of difficulties grow miracles.”
~Jean De La Bruyere

A special thank you to Jen Jones and Cynthia Hornig of Women You Should Know who introduced us to Timna and her inspirational story of survival.

 

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Success Stories SunAWARE Wellness Warriors

Melanoma Survivor Tim

During Skin Cancer Awareness Month, Coolibar invites skin cancer survivors to share their stories with us in their own words. Hope, determination and drive to educate others play a major role in these individuals’ lives. Skin cancer doesn’t discriminate, it can happen to anyone. Prevention and early detection can be life saving! We hope you share these stories with your friends, family and colleagues. Be SunAWARE. Read Tim’s story.

Like the day my wife and I were married, and the days our children were born, Thursday, August 18, 2011 will forever be burned into my memory. We were on vacation in Maine. My wife, son and I were leaving to sneak in nine holes of golf before the day was over when I got the call from my doctor. He confirmed that the suspicious looking mole on my arm was melanoma. Melanoma, the deadliest form of skin cancer, was on the top of my right forearm. Wow. The prognosis was good, the melanoma was .62mm in depth (generally if the melanoma is thicker than 1mm it is more likely to have spread) and therefore was considered an “early stage” and would require an excision surgery to remove surrounding tissue to check for spreading. I was scheduled for this surgery just five days later and although the surgery showed that all of the melanoma was removed, the pathologist suggested another surgery to obtain the proper margins; 1 cm of clean tissue around the melanoma is required to be removed and be clear of cancerous cells for a pathologist to consider it a clean excision. A month later, I had another excision surgery and this time the margins were met. My doctors determined that with these successful surgeries, no further treatment would be necessary at the time.

The physical healing is progressing well; the mental and emotional healing will take a bit more time. A cancer diagnosis is a very scary. This disease can strike at any time, to anybody without prejudice. It can take your world and turn it upside down. Support of friends and family is critical.

I am currently scheduled for full-skin examinations every three months for the next three years. If I am fortunate enough to not have a re-occurrence of melanoma, then I will move to six month examinations and eventually annual examinations.

My diagnosis not only came as a shock to me, but because melanoma can be hereditary, my family was impacted. They scheduled skin exams since their risk was now elevated. As a result, my older brother recently had a procedure to successfully remove a squamous cell carcinoma, a non-lethal form of skin cancer but alarming just the same. With a new outlook on skin protection for my family and myself, I am very thankful for my early detection and now am focused on keeping us all sun safe. There is an acronym being used now concerning the prevention and detection of skin cancers, SunAWARE. A=avoid unprotected exposure to the sun, W=wear protective clothing and hats, A=apply broad-spectrum sunscreens year-round, R=routinely check for changes in your skin and E=educate yourself and family about sun protection.

I have been working on farms and in the construction industry since I was 13 years old. The days of my youth were as many others, careless and carefree. I was never a lay around in sun kind of person but kind of lived my life with the motto “no shoes, no shirt, no problem”. Always outdoors and rarely protected! Eight years ago, with the passing of my friends father from cancer, a group of friends and I signed up for the Pan Mass Challenge to raise money and awareness for the fight against cancer. This event, which is the most successful cancer fundraiser in the nation, was started by a gentleman named Billy Starr after losing his mother to melanoma back in 1980. It is this event that had brought so much good in my life. It became an annual tradition my whole family took part in. The event was most likely caused the damage to those skin cells on my arm. The top of your forearm is 100% exposed while riding a bike. I am on my bike hundreds of hours a year riding over 2000 miles in preparation and before 2010 was completely unprotected from the sun. I have included a picture with my family form the 2012 ride (pictured above) and for the record; I removed my Coolibar Full Zip Bike Jacket a mile from the finish so I could cross the finish line with my team jersey.

Now, as a 42-year-old father of two and an outdoor enthusiast with activities that take me through all 12 months of the year, the protection of my family and myself has become a daily occurrence. Our leading defense against the suns damaging rays is with UV protective clothing and sun protective lotions for the exposed skin. I am similar to most, once I received my diagnosis I enveloped myself with what melanoma is, every aspect of it’s being and mostly how to prevent a re-occurrence, or in my families case an occurrence! That is how I found Coolibar — my leading defense against re-occurrence. I cannot be found outdoors with out a piece of clothing with that distinct logo on it. My other line of defense is sun protection lotion and I have found another ally in that battle, the Environmental Working Group (EWG). The EWG is the nation’s leading environmental health research and advocacy organization. Their mission is to serve as a watchdog to see that Americans get straight facts, unfiltered and unspun, so we can make healthier choices and enjoy a cleaner environment. I research different products on this site for me and my children, and then can usually find those products on the Coolibar website.

As previously mentioned, my diagnosis has rippled through my family and friends. My brother successfully had squamous cell carcinoma removed and is currently on a yearly check up. My children’s pediatrician is on heightened alert to anything that might be remotely suspicious. Most of my friends have gone to a dermatologist for a skin check and have also increased their protection levels. I am not one to soap box, but when it comes to skin cancer awareness, I will stump all day. So many cancers are not preventable and although melanoma might fall into this category we can all greatly diminish our risk. It is becoming increasingly easier in this country to protect yourself, your friends and loved ones, so why wouldn’t we? Awareness over the last five years has significantly skyrocketed. In 2011 the FDA issued new requirements for over-the-counter sunscreens concerning their labeling with regard to their protection levels, what type of UV protection they offer, the terminology used like “sunblock” and “waterproof”. The ability to be protected is ever-present. My hope is that everyone absorbs as much information as they can and use it to protect themselves and their families.

This year I will be adding another acronym to my list, the ABCDE’s of skin cancer. This acronym is concerning moles on your skin and what to look for: Asymmetry (each of the mole’s halves should be identical. Is the mole flat or raised)
; Border (an irregular border is abnormal)
; Color (dark and/or multiple colors signify a potentially dangerous change)
; Diameter (if the mole is larger than a pencil eraser, it may need evaluation)
; Evolution (a sudden change in the mole can indicate a problem).

Tim

“I’m not a dreamer, and I’m not saying this will initiate any kind of definitive answer or cure to cancer, but I believe in miracles. I have to.” …. Terry Fox, October 1979, in a letter requesting support for his run

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Success Stories Wellness Warriors

Melanoma Survivor Vanessa

During Skin Cancer Awareness Month, Coolibar invites skin cancer survivors to share their stories with us in their own words. Hope, determination and drive to educate others play a major role in these individuals’ lives. Skin cancer doesn’t discriminate, it can happen to anyone. Prevention and early detection can be life saving! We hope you share these stories with your friends, family and colleagues. Be SunAWARE. Read Vanessa’s story.

I grew up in small town Idaho where life revolved around nature and the Great Outdoors. Any and all free time our family had was spent outside: camping, fishing, hiking, skiing, riding horses, and playing sports. I naturally excelled at athletics, and my family was amazingly supportive as I bounced around from court to court trying out the newest sport that inspired me. But eventually I picked up a volleyball, and it stuck.

Volleyball has guided me through life. I played DI collegiate volleyball, I coached DII collegiate volleyball, and within the last few years, I learned to love a new format of the game that was introduced to me while living on the east coast – beach volleyball. I quickly discovered that beach was a perfect match for my game as it enhances my speed, agility, smarts and well-roundedness on the court. So I threw myself into training and competing against the best beach athletes in the region, and nation. My career yielded great results and in summer 2012. I competed in18 tournaments in seven different states. I was, and am completely addicted to the game, so at the end of the year I decided to further pursue my dream and passion of playing professional beach volleyball at the top level. In January 2013 I relocated to Hermosa Beach, California – the hub of professional beach volleyball in the US – to start a new life. I am happy to be much closer to family, much closer to the mountains, and much closer to the best in beach volleyball athletes where I can train and continue to build upon a new and exciting career.

Summer 2011, I was enjoying a day of waterskiing with my family when my older sister (who is a doctor), noticed a mole on my stomach that she thought looked questionable. For precautionary purposes, she suggested that I have it removed. It was a mole I had seen every day of my life and I hadn’t ever thought twice about it; but trusting my sister’s advice, I agreed to do so. Within the next week we had removed the mole, sent it off to the labs, and returned to our normal lives. At the time, I was living across the nation from my family, so when the lab results came back, I received a phone call from my older sister with startling news – that small mole was in fact melanoma.

I have always been an active, outdoorsy person, and on top of that I am the perfect candidate for skin cancer as a pale, freckled, red head. But I had never in my life gone in for a skin check, and I most certainly did not have a doctor lined up in Washington D.C. where I was living when I received this news. It was a frightening moment, but I had comfort in talking with my sister and together we researched reputable doctors in the area and I was able to get an appointment not too long after.

The first day I visited Dr. Ali Hendi’s office was eye opening. I was alarmed to see the impact melanoma had on so many patients as they came and went from the office. Most of them were decades older than myself, and walked out of the operating room having lost parts of their face, their ears, their nose, and more. It was a huge reality check on how sun exposure adds up over time.

I was informed that my case of melanoma would require Moh’s surgery, which I knew nothing about, but I was quickly acquainted. Moh’s surgery involves cutting out layer upon layer of skin, and testing each layer, until the Doctors determine that they have gone deep enough and the Melanoma is no longer present in that part of the body. Assuming the Melanoma is caught early enough, Moh’s is the final step in removing the skin cancer.

In my first Moh’s appointment, I left with 21 stitches that went two layers deep into my stomach, and a precautionary removal of 2 other moles. But not too long after, I received another phone call with news that one of those moles came back positive with Melanoma as well. So I schedule to have my second round of Moh’s surgery and thankfully this one wasn’t as deep. I was lucky enough to have caught mine early and never had to undergo radiation or further treatments, but I witnessed hundreds of others that weren’t as fortunate as myself, and I immediately made substantial life changes.

I am the perfect candidate for Melanoma – a fair skinned red head. But unlike most red heads, I tan very well. Throughout my life, I’ve been told many times that I am lucky that I get color. But having had this experience, I would argue the opposite. Because I tanned more than your average red-head, growing up, I likely didn’t pay as much attention to sun exposure than most carrot tops that burn like crazy. But I am just as susceptible. In years past, I wore sunscreen if I was outside for long lengths at a time. But I also liked how I looked with a tan. I liked to get color. And like most young females, I went through a stage where I would visit tanning salons.

Since then my life and views on sun protection have taken a 180. My participation on the professional beach volleyball circuit, and my passion for the game, make sun an inevitable factor in my life; however I have made substantial changes to my training routines to ensure I am being as safe as possible. Not only am I paying more attention to my skin, and taking steps to stay protected, but I have also made skin care awareness my main mission for the 2013 season I have coming up. I am thankful to have incredible Sponsors that believe in me as an athlete, believe in me as a person, and believe in my mission as well which falls in line with what they do as well. KINeSYS Performance Sunscreen keeps me protected in the sun. They produce a variety of sun protection products including a Zinc based ointment, spray on sunblock, facial sunblock sticks, and more that I wear religiously. I will be incorporating Coolibar sun protection clothing to my volleyball wardrobe for a physical block. And the Dermatology team of Moy-Fincher-Chipps in the South Bay of California, also encourage me to be as proactive as possible with their medical support. Since my diagnoses, I have had regular skin checks in 3-month increments, and I have had two other pre-cancerous spots removed. I don’t plan on having any more issues with Melanoma and I will do everything I can to keep my skin cancer free, and educate others on what they can do as well.

I still love the outdoors, and I still love beach volleyball, so being in the sun is an inevitable for me. But if I am not willing to compromise time spent outside, then I have to be, and AM more cognizant of how I prepare to do so. I am a freak about sunscreen, I always have protective layers with me, and I wear a hat nearly everywhere I go. I have two substantial scars of my stomach that act as a reminder of what I went through, and what could easily happen again if I am not careful. Those scars not only act as a reminder for myself, but they act as a conversation starter for other beach volleyball players who spend too much time in the sun. Hopefully my stories inspire them to be more proactive as well.

My advice for everyone is get a skin check – even if you are dark skinned, or barely spend any time in the sun, or think you are fine. It is better to be safe than sorry and a quick skin check will give you peace of mind.

Know the characteristics of irregular moles, and pay attention to those that you have. It is too easy to not pay attention, and not all of us have Doctor sisters looking out for us on the ski boat. If something looks funny, or starts to change, see a Doctor immediately. Wear sunscreen, hats, UPF shirts, and be safe. It doesn’t matter what your skin tone, it isn’t worth the risk.

Photo credit: Scott Allison Photography

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SunAWARE

Isn’t it Time to Live SunSmart?

This month is Melanoma Awareness Month, which provides an excellent opportunity for foundations such as ours, LiveSunSmart.org, to educate the public about the importance of living “Sun Smart.” We know that melanoma is very curable when caught early, but we want to teach everybody ways to minimize their risk when out in the sun without curtailing the fun! It’s pretty simple, actually, we know that staying in the shade and avoid the peak sun hours when possible isn’t always realistic, so use your sunscreen every day, and reapply it often. Wear hats – with the big, wide brims if possible–wear sunglasses and protective clothing. Get your skin checked regularly, learn the signs of melanoma and most importantly make sure your friends and family do the same!

But, melanoma awareness isn’t just limited to the month of May. We want you to protect yourself year-round by making the proper application of sunscreen a routine part of your day, and encourage your family and friends to do the same. That means whether you are on the ski slopes or the beach, the athletic field or the construction site—if you are spending time outdoors eating, recreating or spectating, sun protection is essential. We are all at risk because skin cancer does not discriminate against color, race, ethnicity or gender.

At Live SunSmart.org, we are passionate about our mission and work diligently throughout the year to educate everyone on the importance of early detection and the prevention of melanoma. The foundation honors my father Ray—an athlete, community leader and friend to many—who tragically lost his battle with melanoma at the age of 53. Ray loved interacting with everybody and the best way to celebrate his life is to create a dialogue about skin cancer prevention that could save others.

Nobody should ever have to suffer from skin cancer the way my father – and consequently all of us – suffered. Just a few simple steps integrated into your daily life can change behaviors that may reduce your risk.

The best way to safeguard your skin is to:

• Wear a broad spectrum sunscreen of at least SPF 30 every day
• Apply properly and reapply often
• Wear protective clothing, hats and sunglasses
• Get annual skin cancer screenings
• Tell your family and friends to do the same

At LiveSunSmart.org, we offer a variety of programs to inform the public about easy steps to safeguarding one’s health.

Did you know that UV radiation can damage the eye, affecting surface tissues and internal structures, such as the cornea and lens? Long-term exposure to UV radiation can lead to cataracts, skin cancer around the eyelids and, in some cases, can contribute to ocular melanoma. Our Look SunSmart™ program, encourages people to wear sunglasses year-round to protect your eyes and the surrounding skin areas from UV light.

Another program, Team SunSmart™, was designed to promote the health and wellness of student athletes by making the application of sunscreen a normal pre-game routine. After all, athletes often are outside participating in sports during the peak sun exposure hours. Packing sunscreen in an athlete’s equipment bag should be as important as packing cleats, water or a sports drink. A change in a student athlete’s behavior now will ensure a healthier future since anywhere from 23% – 75% of our lifetime UV exposure occurs before the age of 18.

Ski SunSmart™ works with ski resorts, outdoor winter sports pavilions, and skiing and snowboarding organizations to encourage winter sport enthusiasts to make the application and reapplication of sunscreen a normal routine on the slopes. At 8,000 feet above sea level, you are exposed to 40% more UV radiation than you are at sea level.

Another exciting program we have aims to educate non-medical and salon professionals to recognize the signs of melanoma. Pro SunSmart™ trains these professionals to spot signs of change in their regular customers or notice unusual moles in new customers. Whether it’s during a back adjustment, massage, physical therapy session, athletic training, shampoo and styling, or a pedicure, these professionals have the opportunity to visually examine our backs, scalps and bottoms of our feet.

Throughout the year, we offer on-site school and workplace skin screenings with Board-certified dermatologists. This health initiative helps to demystify the screening process and to broaden everybody’s awareness about the necessity of annual skin checks. So far, we have detected dozens of cases of skin cancer, several of which were melanoma.

There are so many positive benefits to spending time outdoors in the sunlight. At LiveSunSmart.org, we want to create awareness about melanoma and all skin cancers, without creating fear by offering you realistic strategies that allow you to live a sun-compatible life. That’s why we call our annual gala, Celebrate Living SunSmart! This year’s event, which helps support the development and implementation of our family of Live SunSmart programs, will be held on May 30th at Maritime Parc in Liberty State Park, NJ. We will be honoring NFL Coach and CBS NFL Today analyst, Bill Cowher for his tremendous efforts to educate the public, especially men, about the risks of melanoma. As a testament to his diligent work, NFL Commissioner, Roger Goodell will be on hand to present the Apollo Award. Set against the backdrop of the amazing New York City skyline, the gala promises to be a wonderful night of excellent food, entertainment and awareness.

If you would like to learn more about our organization, support our efforts or attend our Celebrate Living SunSmart Gala, please visit www.livesunsmart.org.

Teri Festa is Executive Director and Founder of LiveSunSmart.org, formerly known as the Ray Festa Melanoma Foundation, based in Montclair, NJ.

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Success Stories SunAWARE Wellness Warriors

Melanoma Survivor Capt. Harry

During Skin Cancer Awareness Month, Coolibar invites skin cancer survivors to share their stories with us in their own words. Hope, determination and drive to educate others play a major role in these individuals’ lives. Skin cancer doesn’t discriminate, it can happen to anyone. Prevention and early detection can be life saving! We hope you share these stories with your friends, family and colleagues. Be SunAWARE this month and all year long. Read Capt. Harry’s story below.

I am fifty years old and run a saltwater charter fishing business out of O’Neill’s Marina in St. Pete, Florida. I had always spent a lot of time on the water, but not like this. In 2005, I started going to the dermatologist two times a year. In March of 2012, the dermatologist told me to keep an eye on a spot in the upper middle of my back, not to worry about it, but just watch it. This spot was in a place that I could barely see, even with two mirrors. I made the mistake of forgetting to tell my wife what the doctor said about keeping an eye on that spot.

While on a vacation in October, my wife noticed that spot on my back and said it did not look right. I went to the dermatologist in early November and the doctor said it was great that my wife noticed the spot. It did not look right to him and a biopsy was done.

I was on a fishing charter just off St. Pete beach when the doctor’s office called and told me that I had a Clark Level 3 Melanoma and to schedule an appointment with Moffitt Cancer Center. I didn’t know what to think. I was scared, angry, nervous and just wanted to get off the boat. As much as I tried not to let my clients know what that phone call was about, I’m sure they noticed a change in my attitude. I was so mad and angry that I told my wife that evening, “I don’t want to tell anyone about this, that it was my business, and it stays between us.”

We were reading everything we could about Melanoma and Clark Level 3 diagnosis. All this information was making the both of us more anxious, nervous, scared, angry and upset. Knowing and keeping this a secret was not the right thing to do. After a week or so, we agreed to tell two of her brothers that live close to us and my dad, and at some point my brother and sister who live in other states.

After Thanksgiving, we met with our team at Moffitt Cancer Center, and they told us what the procedure would be and scheduled the surgery for December 13th. While in a tree stand hunting one morning, I finally came to grips with what was going on and decided it was fine to talk about it, and totally changed my attitude. It took me three weeks to get to that point, but the anger was gone. I was still anxious and nervous, but not mad and angry.

After sitting in that tree for three hours, I got down and took a walk through the woods. I came upon a guy who was spraying invasive plant species to get rid of them. We talked for four hours and while talking he tells me that his wife went through breast cancer and Moffitt Cancer Center helped her beat it. She was cancer free and doing great. After about three hours, I told him I had just come to grips with my diagnosis, and I told him about it. He asked if it was alright with me if I would join him in a prayer for me. I told him it can’t hurt, so we prayed. It really was something that I ran into this man just after coming to grips with my situation.

I went in for the surgery on the 13th, and the first step was to inject a dye around the biopsy area to determine where and if the cancer had gone to any lymph nodes. The dye showed that it had gone to one lymph node in my left armpit and three in my right armpit. The surgery went well and they removed one under my left arm and three under my right. They also removed a large area around the biopsy. They scheduled my follow-up visit for December 31st. It was going to be an anxious two and a half weeks waiting for the lab results. After about ten days, my wife said let’s call and get the lab results. This was an anxious call but a great one. The nurse told me that all the lymph nodes came back negative and all of the area around the biopsy was also negative. Hallelujah! Christmas was so much better.

Words to the wise:

I had never heard of Coolibar before having to research melanoma and UPF clothing. Living and boating in Florida, you are going to be in the sun. I think, like myself, a lot of people have never heard of Coolibar. I spend over 200 days on the water, and clients as well as others in my industry, pay attention to what others are wearing. Regular cotton tee shirts just will not hold up, so people need to see others wearing sun protective apparel. Lead by example.

Capt. Harry

Capt. Harry’s Website: Hook Em Harry

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SunAWARE Wellness Warriors

Melanoma Survivor Lauren

During Skin Cancer Awareness Month, Coolibar invites skin cancer survivors to share their stories with us in their own words. Hope, determination and drive to educate others play a major role in these individuals’ lives. Skin cancer doesn’t discriminate, it can happen to anyone. Prevention and early detection can be life saving! We hope you share these stories with your friends, family and colleagues. Be SunAWARE this month and all year round. Read Lauren’s story below.

My name is Lauren, and I am 25 years old.  I grew up in a small Colorado town where I was devoted to my family, friends, and sports. I lived outside, and under tanning bed lights.  I went to college on a volleyball scholarship where my tanning addiction only got worse.  Realizing that skin care was my passion, I gave up college classes for cosmotology ones.  Sitting in my esthetics class is when I realized that I could very well be suffering from Melanoma, and I was right.  Four months after my first mole diagnosis, I completed four rounds of biochemotherapy.  Since then, I have been cancer free and plan on staying that way.

Growing up in a small town that consisted of mostly prisons, antique shops, and bars made it easy for any child to know that almost all activities were meant to be outdoor adventures.  Whether it was swimming at the local pool, riding bikes, or swinging from ropes across a creek; they were all under the blistering Colorado sun.  Back then, wearing sunscreen was advised but never forced.  Oh, how I wish it was.

It all started before I was even in high school.  I realized that my skin always turned into a beautiful tan after only a couple days of suffering a sunburn.  That was not a problem for me; beauty is pain, right?  Any chance I had to roll up my pant legs and arm sleeves to let the sun beam down on me, I took.  I can remember a handful of severe sunburns ranging from scabs on my shoulders, blisters on my legs, and even my lips, but that never stopped me.  All these imperfections would go away, and I would soon have that perfect tan.

Not only did I love to feel the natural sun shine, but I loved the fact that I could get even better results from a tanning bed. I learned that lying in a tanning bed for just twenty minutes was equivalent to laying on a beach for four hours; so I made sure to include the twenty minute sessions of UV rays into my daily routine.  Sometimes I would even let the time run out and start it all over again.  After all, I wanted to have the best “glow” at prom, be the darkest on the volleyball court, and Lord knows, I couldn’t let my true shade show during the winter.  Using tanning beds was a part of my life for nearly ten years.  I was addicted.  Nothing felt better to me than to lie in the warm bed, close my eyes, and doze off to wake up to an even darker complexion.  It was just too easy.

I attended cosmetology school to become an esthetician-someone who works in skin care and is knowledgeable in the best ways to care for the epidermis, go figure.   I remember the week we learned about skin disorders and diseases, a light bulb turned on in my head.  We were going through the ABCD’s of Melanoma, and I realized that a certain mole on top of my head had these exact characteristics, but still, I didn’t think to go to the doctor.  No one ever thinks, “Why yes, this is probably cancer.” Just like when you have a tooth ache, the last thing you think about or want to do is go to the dentist.

Lauren in her Coolibar at the Richard David Kann Melanoma Foundation Offices

A couple months had passed, and this mole was only getting worse.  My grandma finally made it clear that I had to see a doctor, so I went just a couple days later.  I explained to the dermatologist what this mole was doing.  Whether it was oozing, bleeding, or peeling, something was not right.  Without hesitation, the doctor insisted a biopsy be done.  He numbed me and removed it faster than I could say, “Ouch.”  One thing that still pops into my mind when I think about this appointment is near the end of the visit, he told me that he would pray for me.  What?  I’ve never heard a doctor say that.  Did he know something was wrong?

About a week later, the phone finally rang and it was the call my family and I had been waiting for.  We were sure it was nothing, that he would have only good news to tell us.   How wrong we were.  The mole he had removed was a Melanoma, a Stage 4 on the Clark Scale.  He pointed us in the direction of a head and neck surgeon to have a wide excision done on my scalp, as well as a sentinel node biopsy.

Before this procedure, the surgeon was confident that there would be no spread.   He told us there was only a twenty percent chance it would have gone anywhere.  With this statistic, it was easy to feel the slightest bit of comfort.   The surgery went well, but there we were again, waiting.  Another week had passed, the phone rang, and everything changed.  I remember like it was yesterday; he said, “We did an amazing job on your scalp, the margins were perfect and there was no Melanoma found.  But, they did find a little Melanoma in the sentinel node.”  Getting that news once is hard enough, but twice?  There are no words to explain.  I was back under the knife exactly a month later for a complete neck dissection to remove all remaining lymph nodes, and I was officially a Stage III Melanoma patient.

Just nine days after the dissection, I was admitted to UCH in Denver for my first round of biochemotherapy, the most aggressive strategy against Melanoma.  This consisted of three types of chemo, and two bio medicines.  I was hospitalized for five days with a twenty-four hour drip.  I would have two weeks in between cycles, so just enough time to feel almost normal, and then it was right back to where I started.  I completed four of these cycles, and I am so thankful to know that biochemotherapy cannot be done twice.  Nothing makes me happier than to know I will never have to go through that again.

Recovering was hard; I was weak, and I am still weak.  But, my attitude and outlook have never been so strong.  I never let the thought of death cross my mind; it was not an option.  No matter how miserable I was, or how alone I felt, I knew that this was just a huge lesson for me, for people I love, and for people I’ll soon meet.  I couldn’t have fought this battle without all the love and support from my family and friends, especially my mom and dad.

I strive to be a role model for others that have dealt with or who are dealing with Melanoma:   patients, patients’ families, friends, neighbors, anyone who has been affected.  Understanding this disease and how to prevent it is crucial, and I am ready to spread the awareness and make a difference. Know your skin.  Check your skin.  Love your skin.

Lauren

Lauren and her mother at the Richard David Kann Melanoma Foundation Fashion Show Fundraiser 2/12/13
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Events SunAWARE

Skin Cancer Awareness Month 2013

May has been declared Skin Cancer Awareness Month by the Centers for Disease Control. They remind us to increase awareness of the importance of the prevention, early detection and treatment of skin cancer. Each year, approximately 2 million persons in the United States are diagnosed with non melanoma skin cancers. Exposure to ultraviolet (UV) radiation and a history of sunburn are preventable risk factors. With a little pre-planning it is easy to be sun safe all season long, and we’ve gathered a few ideas to help get you started.

1. Be SunAWARE and Be Safe! Use the easy to remember SunAWARE acronym to help keep in mind all the steps needed for sun safety. Remember it, use it and share it!

2. Get a Free Skin Cancer Screening at the Road to Healthy Skin Tour. The Skin Cancer Foundation’s Road to Healthy Skin Tour will make its way across the U.S. The mobile Tour kicks off in New York City in May for Skin Cancer Awareness Month. Check the Tour Schedule to see if it’s visiting your community.  If you go, say hi to the Tour event managers, Chris and Christie, protected by Coolibar Sunwear.

3. SPOT Orange™ on Melanoma Monday.  The American Academy of Dermatology designates the first Monday in May as Melanoma Monday and asks you to SPOT Orange™ to raise awareness of skin cancer. Visit the Academy’s website to find free screenings in your neighborhood.

Coolibar proudly supports the AAD’s SPOT Orange™ Skin Cancer Initiative and you can too.  We donate $10 for every Coolibar UPF 50+ SPOT™ Tee sold.

Coolibar UPF 50+ SPOT T-Shirt Coolibar UPF 50+ SPOT T-Shirt

 4. Attend a Skin Cancer Prevention Event.  Throughout the country there are walks, runs and golf tournaments that all benefit skin cancer prevention efforts. A few of our favorites are MRF’s Miles for Melanoma, MIF Safe from the Sun and the Stay Out of the Sun Run in MN.

5. Celebrate Don’t Fry Day. The National Council on Skin Cancer Prevention declares the Friday before Memorial Day (May 24, 2013) as “Don’t Fry Day” to encourage sun safety awareness. Because no single step can fully protect you and your family from overexposure to UV radiation, follow as many tips as possible.

Do you have other suggestions?  Share how you plan to make May and the rest of your summer sun safe. ‘Leave a reply’ below or visit our Facebook page.

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Wellness Warriors

Melanoma Survivor Kari

I am in my tenth year of battling the beast called stage IV metastatic melanoma, and I am still just as determined to win as I have ever been!

I was originally diagnosed with Stage IV metastatic melanoma in April 2003 just as my daughter Emilia turned one. At diagnosis, disease had spread to my lungs, femur and multiple sub cue locations and my prognosis was grave. I completed two and a half years of bio-chemotherapy and surgery at California Pacific Medical Center in San Francisco and had no evidence of disease in 2004. In recognition of the fifth anniversary of my diagnosis, I spent the first five days of May 2008 walking, with my father (pictured above with me), from Napa to San Francisco (77 miles) to personally thank my physician, Dr. David Minor, and celebrate the gift of life. It was truly the walk of my life!

In May 2009 (the same month as my original diagnosis in 2003), I discovered somewhat ‘by accident’ a lump on my side. It was sudden and unexpected by all, doctors included. A biopsy quickly determined the lump was melanoma, surgery was done with no other cancer found, and I launched into an inpatient IL-2 protocol. Unfortunately, three month progress scans (September 2009) showed a new mass, launching a five month bicoastal diagnostic and potential protocol obstacle course. Our search ended as of March 2010, when after three attempts, I was accepted in the phase II PLX4032 trial at the UCLA. I was an early and complete responder to the drug; however, the side effects were severe and unfortunately the disease returned by the end of the year.

With few options available, I had surgery again in January 2011 to remove a tumor, muscle and nodes in my shoulder and was confident we finally had the upper hand. Despite our determination, melanoma is a crazy beast and it quickly returned. After much discussion and debate regarding quality of life, impact on family, and attempts to forecast the future (ha, ha!), we made the decision for me to start on the newly approved drug “Yervoy” (Ipi) in May 2011.

The response to treatment was positive and we enjoyed a few months “in the clear” only to have the end of the year bring the news that the disease had progressed to my brain. Brain zapping commenced (gamma knife) and was followed with another course of Yervoy. Thankfully my brain is showing signs of improvement (that is shrinking tumors!) but the disease in my body has not been stabilized. 2012 began with a storm of research and investigation on “what next” and it was determined that the immediate course of action called for the surgical removal of a mass in my duodenum. The surgery was a challenging one but I have recovered well. Radiation of seven additional tumors followed in conjunction with another round (third) of treatment with Yervoy (Ipi) that will continue until mid summer. Our fingers are seriously crossed as well.

As always, we remain guided by hope, astounded at the community that continues to surround us, very grateful for the incredible scientific advances that continue to provide us with treatment options and determined to live as full and “normal” of a life as we can.

Kari Worth on Caring Bridge

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