When someone discovers that I am the Communications Director for FIRST, the Foundation for Ichthyosis & Related Skin Types®, typically, I am greeted with the same three questions: “What is ichthyosis?”, “Is someone in your family affected?” and…“What brought you to FIRST?” From a clinical perspective, I may respond by saying: ichthyosis is a family of genetic mutations of the skin characterized by dry, scaling skin that may be thickened or very thin, and most forms of the disorder are very rare. Each year, more than 16,000 babies are born with some form of ichthyosis and it affects people of all ages, races, and gender. Ichthyosis may also severely affect someone’s emotional health and it can lead to a host of other illnesses such as bacterial infection, heat stroke, and immobility.

And, no, I do not know anyone on a personal level that has been affected with ichthyosis.

However, there is more to the story – much more. So what is ichthyosis? It is a genetic skin disorder, yes, but it has also been the catalyst that has lead me on a worldwide journey of meeting the bravest and most inspirational people of my life – a young mother from Illinois, whose baby was born with ichthyosis last December, who has not only accepted her fate of grueling skin care routines, a daily parade of doctors and therapists, and caring for an infant through unprecedented surgeries – but considers it a wondrous blessing; one that she is delighted to share, daily, with the entire world. The young woman from Australia with ichthyosis who has turned her strife into a worldwide “appearance advocacy” effort, changing the way people perceive disability by offering words of empowerment and guidance to all those who “look different” everyday. The teenager from Canada with ichthyosis who only recently shared with us his moment of enlightenment – when he finally realized that because he beat the odds of not “dying by age three,” as doctors had predicted, his life was not a merely ordinary existence, but a destined one. Or, the twenty-year old woman from Arkansas who is the second oldest living individual, with one of the most severe mutations of the disorder – who has not let ichthyosis steal a single moment of her life – and in fact, is now expecting her first child. And of course, the team of medical doctors, stowed away in a clinical laboratory at Yale University, for nearly 31 years, fueled by one and only one thought: finding a cure. Each day, they defy the odds and travel their paths alongside a disorder for which, presently, there is no cure. And they never lose sight that accompanying their every step is hope, support, and the tireless team of advocates at FIRST.

In fact, it is their hope that is the driving force behind mission of FIRST – to educate, inspire, and connect all those affected by ichthyosis. It is their hope that inspires this 31 year-old organization, that has affected so many lives, to be the only national non-profit foundation located in the United States dedicated to assisting families affected by ichthyosis; the only patient advocacy organization funding medical research specifically targeted toward finding advanced treatment as well as a cure, and an organization that has funded 13 projects granting over $1.4 million in research since 2006.

And it is their hope that expands the definition of ichthyosis to the far corners of the human experience – far beyond the diagnosis of a rare genetic disorder.

So what is ichthyosis? It is a message; a call for human compassion; an invitation to experience the authentic awareness of “other.” It is the doorway to unprecedented medical advancements and, most remarkably, it has become an opportunity for worldwide connections…and the chance for global unity.

But the question that is my absolute favorite to answer is this, “What brought you to FIRST?”
If only in these moments I had glamorous, compelling tale of high seas adventure that lead me to their door – but actually, I do not. In truth, the position for Communications Director was actually posted online. The beginning, clearly, is not exactly what you may call riveting. However, as I would not know for several months whether or not the position would be mine, I had the opportunity to discover that this organization was filled with the extraordinary. And what I can also tell you is that I never dreamed, when I was first invited to join the staff, a mere seven weeks ago, having neither friend nor family member affected with ichthyosis – that I would be brought into a community that has felt like the warmest embrace a family could offer.

It is a privilege to work alongside this team of intelligent, passionate and unwavering optimists and I will be eternally grateful for the opportunity to meet all of the unforgettable individuals with ichthyosis; to answer questions about the disorder and to spread the word about our work, our mission and, above all, to raise awareness for this rare disease, so that someday I may be answering the question: When did they find a cure for ichthyosis?

The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) is invited as a guest blogger and does not endorse or serve as a product representative for Coolibar.

Maureen Neville – FIRST

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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

April 26, 2013

Dear Coolibar,

I’ve never felt like writing a fan letter to a company before, but I do now.

Recently, when preparing for a Maui vacation, I entered panic city—I hadn’t been to Hawaii in 20 years and the thought of wearing a bathing suit suddenly horrified me! Local stores offered only boxy board shorts and blah rash guards as alternatives to the ubiquitous skimpy suits. I’d never shopped online for clothes before, but I was desperate!

Quickly, I discovered that only two sites, HyrdoChic and Coolibar, might fit my needs. I came across criticism about Coolibar in a few places, so I tried HydroChic first. I chose five items, though apprehensive about the ones on sale being nonreturnable. The $19 shipping fee was a shock, especially so when the items arrived, 5 days after ordering, stuffed in an envelope that barely survived intact. Unfortunately, none of the pants fit correctly (mainly because of the lack of drawstrings) but I didn’t return them immediately because at that point I had no alternatives. When I was ready to return them I realized they give you only 14 days from the date they were shipped to return them for a refund—my 11 days had long passed!

I decided to give Coolibar a try—and I’m so glad I did! I found none of the criticism I’d read to be true, save one—the fact that you don’t offer swim bras! Otherwise, I found Coolibar to be superior in every way! My 9 items were packed with care and shipped for free (they arrived 8 days after ordering; for my following order of 6 items, I opted to pay the $12.95 for 2^nd day air.) All items were of the highest quality, the pants thankfully had drawstrings and the shirts had internal gripper strips as an extra feature. Also, I was amazed to find how the outfits totally withstood the abuse I subjected them to, with all the snorkeling I did and the many times I got smashed around into the powerful shore breaks and ground into the sand (I saw people in regular bathing suits practically stripped naked.)

My favorite outfit was the Ruche Swim Shirt worn with the Swim Tights (which I found versatile because with the legs pulled up they could be worn as capris.) Also, I was thrilled to find I could go swimming and then go straight to any store or restaurant (if still a bit damp it didn’t show, buy they dried fast!) It helped make my trip more carefree and easy.

Of course, your clothing’s most important feature is sun protection (having had melanoma I learned the importance of that the hard way.) It was great to only have to apply sunscreen to my face, neck, hands and feet, and never get burned. My travel companions went through bottles of sunscreen, and still got sunburned. Also, I learned on my trip that sunscreen is a source of pollution, that there are even days when the water in places like Molokini Crater are covered with oil slicks from their use!

Since I bought multiple sizes (being unsure how they’d fit) I’m very thankful that you have a customer-friendly, REALISTIC, return policy! And, it was great being able to wait until after my trip, when I was certain of what I wanted to keep, to return my unused items!

Thanks for everything, I’ll be ordering again!

Sincerely,

Deborah

Deborah in her UPF 50+ Coolibar Ruched Swim Shirt

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.

The first full day we got there we were able to go to the ocean. It was my youngest daughter Avrey’s first time and Isabelle’s second (though her first was when she was one and I don’t believe she really remembers it, but you never know!). They loved it! Boogie boards were bought along with noodles and they lived in the water for a week straight. Thank goodness for their Coolibar swim shirts and hats, according to my wife Bridget they were a “lifesaver.”

You see, Avrey had surgery about a month ago that has left a minor scar on her eyebrow that needs to be out of the sun at all times so the scar can heal. Historically, she has not been the most cooperative when it comes to wearing sun hats, but with the Surfs Up All Sport Hats and Reversible Bucket Hats she and Izzy were dolls and wore a hat at all times in the sun.

We all had a great time, saw dolphins, swam in the pool, hung out on the beach and, of course ate too much! I gotta say, I lived in the Pipeline Board Shorts and the short and long sleeved Aqua T-Shirt. Bridget loves the Ruche Swim Shirt, Vera Ruched Hoodie and Summer Wrap. We all can’t wait for the sun to finally shine in Minnesota to get to wear it again! I am off to Oklahoma this week for some practice then on to Lake Eufala in Alabama for a tournament next week. Sun is supposed to be shinning, let’s hope so!!

Chad Grigsby
LFW Pro Angler
www.chadgrigsby.com

Chad with his daughters Avrey (purple) and Izzy (pink)

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

According to the American Academy of Dermatology, there is a 75 percent increase in the risk of melanoma, the deadliest type of skin cancer, in those who have been exposed to ultraviolet radiation from indoor tanning, and the risk increases with each use. The proposed order does not prohibit the use of sunlamp products by those under the age of 18, but it provides a warning on the consequences.

The order would reclassify sunlamp products from a low risk device (class I) to a moderate risk device (class II).

“Using indoor tanning beds can damage your skin and increase your risk of developing skin cancer,” said FDA Commissioner Margaret A. Hamburg, M.D. “The FDA’s proposed changes will help address some of the risks associated with sunlamp products and provide consumers with clear and consistent information.”

If the order is finalized, manufacturers would have to submit a pre-market notification (510(k)) to the FDA for these devices, which are currently exempt from any pre-market review. Manufacturers would have to show that their products have met certain performance testing requirements, address certain product design characteristics and provide comprehensive labeling that presents consumers with clear information on the risks of use. The order proposes to include a contraindication against use on people under 18 years old, and the labeling would have to include a warning that frequent users of sunlamp products should be regularly screened for skin cancer.

Resource: http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm350864.htm

As a teacher, I get some nice chunks of time off throughout the year, and I do my best to spend these breaks doing what I love — rock climbing.  This year, I journeyed west to Oregon and climbed on the welded tuff that was left over after a long ago volcanic episode.  There is a really strong and interesting history of rock climbing in Smith Rock State park, and it is often sited as the birthplace of sport climbing in America.  Sport climbing involves clipping pre-placed bolts as opposed to traditional (or “trad’) climbing, which involves placing your own protection in the rock as you ascend a crack system.

I was fortunate enough to join a married couple and their son for this trip.  Additionally, I met up with an old friend and roommate whom I lived with in Yosemite Valley when I worked there as a park ranger.  The trip had all the makings of a great time: classic climbing routes and good people to hang out with.

Smith Rock

The first day we climbed at a place called “The Lower Gorge”, where we avoided the large crowds that were enjoying their last day of spring break at some of the more popular crags (crag=cliff where people climb).  Jacob, my old roommate, and I teamed up and spent most of the day trad climbing classic crack routes. 

Since we were both new to the area, we decided to climb routes that we could onsight (climb first try without falling) instead of trying harder routes that were on the outer limits of our ability.  The day was awesome: we climbed 10 routes, each only falling once.   We both flashed (climbed without falling) “Pure Palm” (5.11a), which is a route with very few holds, and involves a lot of stemming.  Super classic!

Unfortunately, at the end of the day on the last route I climbed, my shoulder gave a large “creak!” and was a little tweaked the rest of the trip.  I’ve learned this same lesson many times before; but it’s hard to control my excitement.  My mentality is to always push myself to do more, partially because I simply love climb but also because I want to get better.  The lesson I took away from this experience is to quit while I’m ahead.  Injuries happen when tired.

Monday was a bit strange: I had two phone interviews for teaching jobs in Denver because my wife and I are relocating for her residency program in Emergency Medicine.  My day went something like: interview, climb, interview, climb.  I think I probably had the best view anyone has ever had during an interview as I looked out over Smith Rock from Jacob’s car.

Lets Face It 10b

The day was a total success: the interviews went well and I sent “Ring of Fire” (5.11d) on my 2^nd attempt. 

Tuesday, Jacob and I did a multipitch (multiple rope lengths above the ground) route called “Wherever I May Roam” (5.9, 5 pitches).  The route, although easy, was enjoyable because I don’t get the opportunity to get hundreds of feet off the ground in Minnesota.  He headed back to Portland afterwards, and I met up with my crew from MN.  We worked on a super fun route called “Lightly Toasted” (5.11c).  Dan hung the draws and made a great effort.  I went next and fell at the crux (hardest part of the route).  We both sent next go.

The last day of the trip was one of the most memorable ones.  We had a leisurely morning, each one of us catching up on our “normal” life (aka work).  After lunch, we decided to head to Smith Rock for one final session of climbing.  On the drive, the weather looked questionable.  As we pulled into the parking lot, it started to rain.  Laughing, we tossed our backpacks on and hiked down to “The Morning Glory” wall.  On the way, about a dozen climbers passed us on their way to the parking lot.  “Perfect!” Dan said to me.  All the climbers had left and we had the entire wall to ourselves.

We quickly roped up and I lead “Nine Gallon Buckets” (5.10c) which is a really spectacular route; in fact probably the best single pitch of 5.10c I’ve ever climbed.  Next, we got on “Full Light Doritos Flavor” (5.12a), which is a pitch of 5.11a with a three-bolt extension.  I lead first, hanging a couple times.  Dan and Bronwyn both had a great time on it, making great efforts.  The clouds were back to looking ominous.   I quickly decided to try to send the route and soon I was well above the ground. 

As I entered into the crux (hardest part of the climb), it began to rain.  It didn’t matter.  I was in the zone.  All the clutter in my brain dissolved into the background.  The rain spattered against the rock as the wind picked up.  Moves that had felt hard the first time went smoothly.  Soon, I was at the final undercling, staring the anchors in the face.  I high stepped with my left foot, pushed hard on my right handhold, and reached effortlessly to the final jug.

The hike out was surreal.  It rained, a rainbow appeared, and then a double rainbow topped the whole day off.  I smiled from ear to ear on my hike out and the trip ended in a special way.  Spending meaningful time with people, seeing new sites, climbing new routes…these are the things that make me tick.

- Sevve Stember
Coolibar Athlete

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