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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 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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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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Wellness Warriors

Cancer Be Glammed

Canncer Be Glammed

The words cancer and glamour are rarely used in the same sentence…that is until now. We love the work that Cancer Be Glammed is doing to help women recover from cancer with confidence, self-esteem and style. Lisa Lurie, the company’s co-founder, shares her inspiration for starting this organization. And if you are looking for some good holiday gift ideas for the survivor in your life, Lisa’s team has some excellent suggestions. They even have a personal concierge.

Cancer and Glam are two words that most women don’t associate together.  As a cancer survivor and co-founder of Cancer Be Glammed, I am determined to change that.

Cancer Be Glammed was born from the frustration I felt during my own battle with breast cancer. Following my diagnosis, I underwent a double mastectomy and chemotherapy. Like most women who are quickly thrown onto the cancer rollercoaster, I was totally unprepared for the side effects of surgery and treatment.  Side effects that included permanent physical changes, hair loss, weight issues, and skin made ultra-sensitive to the sun.

It was soul destroying for me to look into the mirror. I could barely recognize the tired, bloated woman in the sweatpants, baggy top, and bandana– staring back.

Head scarf from CBG

When I recovered, I co-founded, Cancer Be Glammed.  Our goal–to prepare women for the side effects of surgery and treatment, and to provide them with easy access to fashionable products and style solutions to help them maintain their self-esteem and lifestyle.

On our website, www.CancerBeGlammed.com, women can shop for practical yet stylish products like beautiful headscarves and wraps, skin care that pampers and heals treatment sensitive skin, and great sun protective hats, clothing, and accessories.

In addition, we feature ideal gifts like journals, eReaders, soothing teas, and more that a woman going through treatment will use and appreciate.  Our Personal Concierge can help a woman choose items for herself or make gift recommendations to family members or friends.

Through our blog, Facebook, Twitter and other media, we are bringing together a community of women sharing their own advice on how to “Recover In Style.”  Cancer treatment is so hard, looking and feeling better — shouldn’t be.

Lisa Lurie

Lisa Lurie co-founder Cancer Be Glammed

 

 

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Coolibar Athletes Routinely Check Skin Wellness Warriors

Coolibar Athlete Kristie Talks Melanoma Prevention

This is a special blog post from Coolibar Athlete Kristie Cranford and her words-to-the-wise regarding Melanoma and how you can protect yourself. She speaks from personal experience.

Melanoma-n. 1.  –mas also –mata: a usu. malignant tumor containing dark pigment. 2. Deadly Skin Cancer. The one that won’t leave me alone.

When you get up in the morning, you get dressed, right? Shirt, pants, shoes?  You wouldn’t leave the house naked, would you? But sadly many do. Many leave the house without sunscreen. Sunscreen should be an essential part of your wardrobe.

I am a multiple melanoma (skin cancer) survivor. You never think you will ever hear the words “You have cancer” once in your life, let alone time, after time, after time, like I have. My first and most advanced was discovered during a routine annual exam. It was in the center of my back. I had no way to knowing it was there. Undetected, it would have killed me, I was only 27. I had an area the size of a small nerf football removed from my back because of a mole the size of a pencil eraser. Melanoma  is the most deadly form of skin cancer.

Here are some statistics:

  • In 2012 more than 116,000 people will be diagnosed with the disease
  • By 2012, it is estimated that one in 50 people will be diagnosed with melanoma
  • One person dies nearly EVERY HOUR from melanoma
  • Melanoma affects people of every age and every race
  • The incidence rate for children 18 and under INCREASED by 84% from 1975 to 2005

Many cases of skin cancer can be prevented and detected early.  Here are the ABCDEs of melanoma:

Asymmetry:  One half of the mole does not match the other half

Border:  The borders of the mole are irregular, ragged, blurred, or a notch

Color:  The color of the mole is not the same throughout. There may be brown, black, red, blue, or white.

Diameter:  The mole is larger than 6 millimeters (roughly ¼”, roughly the size of a pencil eraser)

Evolution:  The mole has been growing or changed its shape and color.

Protect yourself anytime when outdoors, rain or shine. Don’t just avoid peak sun exposure hours between 10am and 4pm. Water, Sand and Snow reflect the sun’s rays. Wear sunscreen with an SPF factor of 30 or higher, remember to reapply. My favorite is Raw Elements USA. The Eco Stick can be easily applied under water and over sweat. Smaller than an energy gel, it’s easy to carry.  Look for sun protective clothing like Coolibar. Wear sunglasses to protect your eyes from ocular melanoma. AVOID TANNING BEDS.  Apply sunscreen before placing your hands under the UV rays at the nail salon (bet you NEVER thought about that). Visit a trained dermatologist annually for a complete, head-to-toe exam.

I used to be bitter and angry with Melanoma. I was angry that it was determined to kill me. Then I realized. It saved me. I took back my health. Over time I started eating right, running, and having routine exams and screenings. I credit Melanoma for saving my life. Without it, I would not have detected my breast and cervical cancers in the early stages. I am living breathing proof that early detection is the key to survival.

As athletes we train and compete outdoors. We take precautions to train smart and eat right to prevent illness and injury. Please, don’t forget your skin.

Information, statistics, and ABCDE’s obtained via www.OutruntheSun.org

Visit Kristie’s Blog Here: http://coachkristie.com/2012/07/03/melanoma/

Read Kristie’s full cancer stroy here: http://www.prsfit.com/blog/cancerversary-n-1-_____-2-the-anniversary-of-my-first-cancer-diagnosis/

Visit Coolibar for sunscreen and sun protective clothing: www.coolibar.com

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Success Stories Wellness Warriors

75 time skin cancer patient urges sunscreen use

You’ve heard the advice about wearing sunscreen over and over. But would it mean a little more coming from someone who’s survived skin cancer at least 75 times?

Dennis Hassel enrolled in the U.S. Navy when he was in his 20s. Between work and play, he spent about half of every day outside, often without a shirt and always without sunscreen.

Hassel, now 81, estimates he’s had basal cell carcinoma, a common form of skin cancer, 75 to 100 times. The cancerous growths appear on his face, side, neck, arms, back and chest and often look like small red spots that bleed and don’t heal.

Hassel has an appointment every three months with a dermatologist at the University of Virginia Health System, where any new spots are evaluated. Treatment usually requires cutting out the suspicious spot and sending it to a lab to ensure the doctor removed all the cancer. Sometimes his dermatologist freezes off the spot or gives him a cream to use.

Hassel thinks the x-ray acne treatments he used to get contributed to his recurring cancer, but, “it was mostly the sun,” he says. “I can’t say enough about getting the word out to people who think they’re immune to the sun. They’re not.”

Beyond just remembering to wear sunscreen (Hassel now wears 100 SPF), what can you do to avoid skin cancer? UVA dermatologist Mark Russell recommends you:

– Apply sunscreen 15-20 minutes before going outside.
– Reapply every 1-2 hours. Sunscreen can break down, wear off, wash off or sweat off.
– Use a broad-spectrum sunscreen that protects against UVA and UVB rays and make sure it hasn’t expired.
– Use about an ounce of sunscreen ­— the amount it takes to fill a shot glass — to cover your whole body.
– Stay in the shade when possible and avoid sun exposure during the hottest part of the day, 10 a.m. to 4 p.m.
– Wear a wide-brimmed hat — not a baseball cap — that protects your neck and ears.

The Skin Cancer Foundation has images and warning signs of each kind of skin cancer. If you find a suspicious spot, get it checked by a dermatologist immediately.

UVA dermatologists offer a free skin cancer screening every year. Currently, they’re also providing Coolibar hats to people who attend the screening and bring a less protective hat, like a baseball cap, to trade. Coolibar hats have the wide brims Dr. Russell recommends.

Photo: UVA Employee Kat modeling Coolibar hat used in hat swap program.

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Success Stories Wellness Warriors

Unborn Daughter Saves Mother From Melanoma

Have you heard of a mom’s unborn child saving her life? Erica’s daughter Caroline did just that (both pictured to left). Read Erica’s story and how her daughter may just have saved her from Melanoma.

My name is Erica. I am a daughter, granddaughter, wife and mother.  Although having my child at the age of 22 was not in my immediate plans, I often say that if it wasn’t for my strong-willed, red-headed little girl I may not have been here to make plans.  I am a firm believer in everything happening for a reason and am at complete peace with the bumpy ride I am still on regarding my skin.  This is a short version of my journey with melanoma thus far. 

Two months after my 22nd birthday I had a six month OBGYN appointment.  I always saw a midwife but on this particular day I saw the actual OB and I was wearing shorts, something I rarely did while I was pregnant.  He took one look at a spot on my thigh and suggested I see my primary care doctor immediately to have it checked out.  This mole had been on my leg for about two years and although it was ugly it was just one of those things I kept putting off getting checked.  It was not important to me, after all what could it have been?  Just an ugly, unattractive spot I could get taken off for cosmetic reasons?  My general practitioner believed it to be nothing but still removed it for further testing.  Initially, I was told that it was severely dysplastic and I was sitting on the door step of melanoma.  After further evaluation from the pathologist it was confirmed that I indeed had a .68 mm stage 1 melanoma that showed signs of regression. 

When I got the news that I had melanoma it truly didn’t hit me that this was a very serious condition.  When I got the call from the doctor that I needed to go in that morning I went by myself and was not the slightest bit nervous. I vividly remember the nurse hugging me and telling me that all would be o.k. and I would still be here for my daughter.  It was at that point that I broke down crying in the office, hugging a stranger trying to get a good grip on the fact that I not only had cancer but I had the deadliest form of skin cancer.

After that things started moving very fast.  I was scheduled immediately for a WLE (wide local excision) and a lymph node biopsy because I had some issues with them around the time the mole originally appeared. Being that I was pregnant, the lymph node biopsy had to wait until my little girl was around seven weeks old.  The WLE resulted in clear margins and there was no signs of melanoma in my lymph nodes once they were checked.  All was fine until roughly seven months later when another melanoma was found in my groin region.  Thankfully that one was an in situ which is essentially stage 0 and is not invasive.  Several other biopsies were taken as a precautionary measure which has left me with several keloids scattered around my body.  Since then I have had a nevus with pre-cancerous cells which was taken care of with a WLE.  I am also currently awaiting results on another biopsy. 

One of the biggest questions I get asked about my personal experience with melanoma is how did I get it.  When I was sixteen I began going to the tanning bed. As a teenager and even during my collage years I didn’t do the typical rebellious things such as drinking, partying, etc.  I was a homebody, an honor student, the type of person who chose to go to bed at 9 on a Friday night.  Little did I know, the one activity I was partaking in to make me feel good about myself and boost my self-confidence was the number one thing that could have very easily robbed me of my life. I would tan a couple times a week, use the hottest tanning lotions and tan for about 15-20 minutes at a time.  What I didn’t know is each and every time I would lay in a tanning bed I was engaging in risky behavior that could have been fatal. During my tanning years I heard of melanoma and even saw pictures but I always brushed it off as something that would not happen to me or happen many years down the road when I was “old”.  I have since found out that skin cancer also runs on my paternal side of the family, something I had no idea about at the time.  Unfortunately, ignorance truly is bliss.

In the past two years I have became very educated when it comes to melanoma.  I have read and reread the facts, told anyone and everyone who will listen about my story and have became very vigilant with my skin checks.  I see my dermatologist every three months and we check and reevaluate areas of concern. My little girl will forever be at a higher risk given my history so sunscreen, monitoring her skin and keeping her safe from the sun is of utmost importance to me.  I am also learning to embrace my once tan body that is now a body full of scars, keloids and regularly appearing nevi. If I was to never get another melanoma it would not mean that it is totally over.  It would simply mean that there is NED (no evidence of disease).  Melanoma education, prevention and awareness will forever play a big role in my life!

Erica Adams – Founder of Astheygrowup.com blog

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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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