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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 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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Success Stories Wellness Warriors

Melanoma Survivor Sam

During Skin Cancer Awareness Month, Coolibar invites skin cancer survivors to share their stories with us in their own words. The ins and outs of treatment can be intense and not necessarily a fun thing to read; however 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 the all year round.

From Samantha Hessel

Cancer- just a six letter word when looked at purely by letters means nothing. When looked at medically means a diagnosis, hope for a cure, and a battle. When looked at physically is an organism that invades your body and life. When looked at emotionally it breaks you down, tears you apart, and instills fear, sadness, anger, and betrayal in you and your loved ones. Cancer unwelcomingly entered my life two and a half years ago when I was 19 years old. The day before my diagnosis, my family and I enjoyed a nice day together touring quaint, local shops and having a delicious lunch. Little did we know at 8 am the next morning our lives would change forever. On July 24, 2009 I was diagnosed with melanoma skin cancer at 19 years old. On August 13, 2009 I had a minor surgery to remove the rest of the mole and 1cm of surrounding skin.

I never thought at 19 I would have heard “you have cancer”. If it wasn’t for my mom pushing me to have skin checks every year I have no idea what my life would be like right now. From this experience I have learned how truly important it is to protect yourself from the sun, especially tanning beds. I am guilty as charged for using tanning beds from 15-18 years old and truly regret it. If I would have listened to those around me I may not being writing about this experience. Now I protect myself from the sun every day by applying sunscreen regularly and wearing sun protective clothing when I know I will be outside for long periods. Hats have become my new best friend. Yes, is it hard when everyone else is at the beach and not only do I feel I can’t go because of the sun, but when I do go I am all covered in clothing, sticking out like a sore thumb or hearing comments about “how pale you are”. Does it hurt? OF COURSE! I take the looks and the comments because I know in my heart it is better than hearing “you have melanoma” again and enduring a fight for my life. I use that hurt to educate in my local community and I hope through awareness people will come to understand that getting a tan and being a bronze goddess is not worth losing your life.

My challenge to all Coolibar Blog readers is educate your kids, yourself, friends, family, community, workplace, etc. about the dangers of the sun. I beg you because it breaks my heart when people lose their life to this horrible disease. Educate and create awareness so no one has to hear the words “you have cancer” especially at a young age.

Me dressed in all Coolibar in this past summer
In my homecoming dress (when I used to tan)
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School sun safety SunAWARE

Gearing Up for Skin Cancer Awareness Month

May has been declared Skin Cancer Awareness Month by the Centers for Disease Control. Each year there are more new cases of skin cancer than the combined incidence of cancers of the breast, prostate, lung and colon according to the American Cancer Society. Take advantage of the wealth of skin cancer prevention resources available next month so you can become SunAWARE and help prevent and detect skin cancers.

1. Start out May with a free skin cancer screening.

The American Academy of Dermatology (AAD) designates the first Monday in May as Melanoma Monday (5/7/2012). Dermatology offices often provide free skin cancer screenings. Find a free skin cancer screening on the AAD website or by calling your local dermatology office.

Additionally, this year, the AAD will launch their SPOT Skin Cancer™ public education initiative on Melanoma Monday. The initiative aims to educate the public about skin cancer and promote positive behavior to prevent and detect skin cancer. SPOT Skin Cancer™ also will position dermatologists as the experts in the prevention, diagnosis and treatment of skin cancer.

2. Walk or run to support skin cancer research.

Register to walk or run and raise money in support of skin cancer research through the Melanoma Research Foundation. Search for an event in your area, or create your own Miles for Melanoma event. Miles for Melanoma events take place across the United States and are hosted by volunteers.

3. Register to win school sun hats from Coolibar.

Coolibar is giving away up to 50 school sun hats to five winning classrooms across the United States. Download the contest form or enter online. Contest deadline is May 11, 2012.

4. Kick off your summer with Don’t Fry Day.

The Friday before Memorial Day (5/25/2012) is deemed Don’t Fry Day by The National Council on Skin Cancer Prevention. The purpose is to remind everyone to protect your skin while enjoying the outdoors.

5. Pledge to follow these simple steps of SunAWARE to prevent and detect skin cancers all summer.

Avoid unprotected exposure to sunlight, seek shade, and never indoor tan.

Wear sun protective clothing, including a long-sleeved shirt, pants, a wide-brimmed hat, and sunglasses year-round.

Apply recommended amounts of broad-spectrum sunscreen with a sunburn protection factor (SPF) greater than or equal to 30 to all exposed skin and reapply every two hours, or as needed.

Routinely examine your whole body for changes in your skin and report concerns to a parent or healthcare provider.

Educate your family and community about the need to be SunAWARE.

If you have any ideas, suggestions or events on skin cancer prevention, please share them with us.

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Expert Rx Routinely Check Skin SunAWARE Videos

The Importance of SKIN CHECKS (Video)
Hi, this is Dr. Davis for Coolibar Sun Protective Clothing.

As a dermatologist, I wanted to outline why it is important to get SKIN CHECKS. The advice varies per individual. It really depends on what kind of skin you have. If you are exceptionally fair vs. exceptionally dark there aren’t straight across the board recommendations for what you need. However, at least once in your life, preferably not too far past your 20’s get a good Full Body Skin Check so at least we can map out areas that are potentially warranting a little closer observation versus things we know will never be trouble. 

For people who’ve had skin cancer we say once a year for sure, timed with your general physical. For people who’ve never had a skin cancer, maybe once every couple of years or as something crops up. If you have something that is not healing or bleeding or changing color or growing or something that generally gets your attention even if it just itches. Bring that to our attention or at least bring it to the attention of your primary care doctor so that they can help determine if you need a dermatologist to see that (spot). Skin cancer can look so different in different people and even the same skin cancer looks different and it takes a dermatologist sometimes to really be able to tell you if that lesion is of concern or not. 

The guidelines are the ABCD’s of Melanoma. We’ve all heard of those. So if something is asymmetric, or the boarder is irregular, or the color is of concern to you, an espresso brown, or the diameter is simply growing. And certainly if it were bleeding or itching or otherwise bothering you come and have us give it a check. 

If those things are not happening schedule that baseline exam so we can take one good look over and then we can plan our skin care from there. 

Be skin safe, be SunAWARE! 

Disclaimer: The information provided by Coolibar and its contributors is general skin care information and should not be a substitute for obtaining medical advice from your physician and is not intended to diagnose or treat any specific medical problem.

Skin Check
ABCD's of Melanoma
 
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