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Skin Diaries

Skin Diaries This is Brave

This is Brave: Susanne Milne

In May 2009, I noticed a mole on my thigh had changed. The surface had become rougher, so I made an appointment with my dermatologist as quickly as possible. They removed and biopsied the mole and sent me away with a weekend of worry about my diagnosis. On June 3rd, I received the news that the mole was in fact melanoma.

I immediately connected with a team of doctors at NYU Langone Health. They identified it as Stage III Melanoma and scheduled an operation to remove it. I powered through that operation, and a following one to remove lymph nodes adjacent to the mole. By August 18th, I was given the all-clear as all my scans showed No Evidence of Disease (NED), and I continued my life at full force.

The changes to my life were small following this intense two-month period of surgeries. Mainly, it consisted of diligently applying sunscreen and quarterly mole checks. With a Stage III diagnosis, there was a 50/50 chance the cancer could come back. After two years, if all went well, I’d be able to go every six months. Aside from sun protection and appointments, I continued to work hard as an architect while enjoying all New York City can offer with the support from my family, extra-mums and great friends.

By Fall 2013, I had been cancer-free for four years and my fear of it returning had diminished greatly. When it came time for my second scan of the year, I was less nervous than I had ever been. However, the scan showed something in my lung. A specialist reviewed it and recommended a biopsy. I spent New Year’s Eve 2013 having a biopsy of my lung. I started 2014 with the anticipation of possible bad news.

The news came January 3rd, 2014; I had a tumor in my lung and was now a Stage IV Melanoma patient. This was the start of five-year pinball game of tumors in my liver, brain, liver again, brain again and again, stomach, breast, lung again and adrenal gland. The only way through this was surgeries, different medications and immunotherapies—all with their own set of side effects. I was able to reduce my cancer, and the few tumors I still have are stable and no new tumors have come up since September 2018. However, I’m still waiting to hear the magic words “No Evidence of Disease”.

Generally, I don’t speak a lot about my disease and have kept my journey private; but meeting other patients and caregivers has allowed me to look at my situation differently. I have been lucky in the sense that I have always received excellent care, all my surgeries have gone extremely well (even the scary brain surgeries), and I have been able to work full-time throughout my cancer journey. This is proof of my own tenacity, courage and optimism, but more importantly the support of my medical team, workplace, amazing family, extra-mums and friends. Knowing that I have been so lucky has helped me expand my focus beyond my own story to a bigger cause.

In January 2015, I joined the Melanoma Research Foundation (MRF) to connect with other melanoma patients and be an advocate for melanoma research and education. Being part of the MRF has been rewarding on many levels. I have made new friends who are melanoma warriors and have become an advocate for education, awareness and prevention. Each year, I travel to D.C. for the MRF’s Hill Day where we approach Senators and Representatives to speak about melanoma as an advocate for sun protection use, tanning bed legislation, among other things. Being a part of the MRF in this way has taught me to value my voice and my story as a tool that can help save lives.

I often get asked how I’ve done it all since my first diagnosis. Early on in my Stage IV journey, my oncologist, Anna Pavlick, sat me down after a rough run with my medications which I had—per usual—tried to power through. We had a conversation about the need to check in and let my doctors know about my conditions and side effects rather than just take my medications, regardless of how bad I felt.

Dr. Pavlicks message to me was this:

“It is my job to take care of and manage your cancer; your job is to live your life to the fullest.”

This changed my attitude about how to cope and live with an aggressive cancer. It has allowed me to trust in my medical team, to not worry all the time about my treatments, and to continue living my life according to my own rules and abilities. I may have cancer for the rest of my life. I can’t ignore the impact it will have on me and my body, but I can learn how to manage it and maintain life. Accept that I am not running a sprint but a marathon. I have learned to take care of myself. To eat well, do yoga, stay in bed all day Sundays if I need it, travel, read a book and spend time with the people I love. Always choose to stay positive, always live in the moment, be brave and be here.

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Skin Diaries This is Brave

This is Brave: Cassie Beisel

For me, change happened on January 24th, 2011. I will never forget those words, “You have cancer.” “How is this even possible?” I thought to myself.  As an avid outdoor enthusiast and rock climber, I was in the best shape of my life. How could I have cancer? As I would come to find out, the answer to that question was easy. As an outdoor enthusiast and someone with misinformation about base tans, I often spent many spring seasons prepping my skin in a tanning bed as a preventative measure to burning.

With the presentation of a swollen lymph node in my right arm and no primary mole, it took my doctors a month to realize that this was stage 3B melanoma and not breast cancer. I was 32 and had no clue what melanoma was but based on the doctor’s reactions, I knew that treating this was something of urgency.

Not knowing what to ask my doctors and perhaps feeling a bit naive for not know what melanoma was, I immediately took to the web, where I came across the Melanoma Research Foundation’s (MRF) website. It was here where I found an abundance of educational resources about melanoma helping me to better understand my diagnosis and treatment options. I underwent a full lymph node dissection, finding melanoma in three out of 36 lymph nodes and completed a year of interferon.

The MRF played such an important role in my journey from diagnosis to recovery. Six months after my treatment ended, I dedicated my time to fundraising for them as a volunteer. I would ride 100 miles to raise funds to help other young adults like me; hoping to make their journey a little easier through funding life-saving research.

It was three days after my ride that I would land in the hospital with acute leukemia. After a bone marrow transplant and two years of recovery, it was time for me to return to the workforce. As a young adult with two cancers and four year’s out of the workforce, I knew that returning to my everyday life in the hospitality business would be challenging for me. I just couldn’t go back to where I’d come from. My melanoma diagnosis had changed everything for me.

In 2014, I joined the Melanoma Research Foundation. Currently, I lead the organization’s advocacy efforts to mobilize advances in policy and federal funding. I also represent and engage the interest of the melanoma community and focus on partnering with industries seeking to amplify our voice.

My journey with skin cancer hasn’t ended, recently I had my Moh’s surgery to remove my third squamous cell carcinoma (the second most common form of skin cancer). I still live with the fear of a melanoma recurrence daily.

Melanoma is not “just skin cancer,” no skin cancer is “just skin cancer.” It is a big deal and it impacts the lives of millions across the globe and contributes to over tens of thousands of deaths each year. I am honored to have survived and been able to devote my career to helping those who have been impacted by this disease.

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Skin Diaries This is Brave

This is Brave: Sharon Hierlmaier

I’m not a writer, but I am a survivor and know first-hand the value of sharing your story, so I will do my best.

In January of 2006, I was at a yearly physical appointment, when my doctor noticed a spot on my back that looked suspicious. She took a biopsy of it and it tested positive for Basal Cell Carcinoma. I then started seeing a dermatologist every six months and every time I would have more basal cell removed.

My dermatologist once joked, “You have skin that loves to produce basal cell!” I’ve learned to be grateful that my skin doesn’t produce more. I’ve now had 12 basal cell spots removed, but I still feel lucky. I have a doctor who is proactive about checking and removing spots and is aware of studies taking place that could help prevent someone else from being stuck in the cycle I’m in.

I am all about preventing this in others. I am a Child Care Director at Our Lady of Grace Catholic School in Edina, MN. Since being diagnosed, I also became a grandmother. I want the families in my community and my grandchildren to be protected from the dangers of the sun.

I know full well that my skin doesn’t love the sun. As my dermatologist pointed out, my skin loves basal cell. I do love the sun though and go outside every day with long sleeves, a hat and sunscreen – no matter the weather. With the help of parents at my school, I’ve been able to make sure our children do too.

As the director of the child care program, it’s my job to care for our students year-round. In the summer we are constantly around water. Early on, I always made sure our students had sunscreen on before going outdoors – and still do. In 2011, I started noticing that a parent was sending her children to school in a swimsuit from Coolibar.

I asked her about the swimsuits, she let me know that she was a dermatologist and the suit was from Coolibar, a local company in Minneapolis. We got to talking about the need for sun protection and, with the financial support of that wonderful parent, Dr. Mimi Cho we were able to purchase rash guards for every student in our summer program. At the end of every day, I would collect the swim shirts, take them home and wash them for the next day.

Along with sunscreen on exposed skin, the kids wore them any time we were around the water. It instantly just became something we did. The norm. Even our summer staff wear the swim shirts to model sun-safe behaviors for our students. These shirts made it through seven summers. Just this year, we were able to work with Coolibar and Dr. Cho to get an entirely new set of rash guards and sunscreen donated to the school. We’re grateful to be able to continue our sun-safe practices. Being able to teach kids about the importance of sun-safety is huge.

Thanks to a parent in our community and my own personal experience, I am in a positive position to care for people in my life – my students, their families, my own family and grandchildren. I understand the risks of going out into the sun unprotected and I have the scars to prove it. I’m grateful that I can bare those scars so that our young people may not have to someday.

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Skin Diaries

A Finish Line She’ll Never Forget

As a 27-year-old female, I never would have thought of melanoma as a possibility, but I’ve since learned that melanoma is one of the most common cancers in young adults.

In September of 2018, I went to the dermatologist for the first time in over 8 years. I had scheduled an appointment to look into getting a skin tag removed. My purpose for the visit quickly shifted gears as the dermatologist took a scan of my body and noticed an unusual spot on my back. I walked out of Tufts Medical Center that day waiting on biopsy results. Not me, I thought. Melanoma was the furthest thing from my mind.

I found out a few days later that the mole tested positive for melanoma in situ. Fortunately, I soon learned this was the earliest and best stage to catch melanoma. The dermatologist insisted I come in that week for surgery to fully remove the mole. Now healthy, I’m forever grateful to the dermatology team at Tufts Medical Center.

Three weeks before my September surgery, I had signed up to run my second marathon. I ran my first marathon in October of 2017, the Eversource Hartford, Connecticut Marathon. Originally from Connecticut, it was memorable to be able to complete my first marathon at home with close family and friends cheering me on. After crossing the finish line, I was immediately hooked. Now, a year later, I was planning to run on October 7th, 2018 in the Bank of America Chicago Marathon. I had trained all the way up to 18 miles and raised over $1,100 for the American Heart Association with the help of some amazing family and friends. Unfortunately, the recovery period after surgery doesn’t allow for strenuous activity. I observed the 2018 Bank of America Chicago Marathon from the sidelines.

As I healed, I began to research charities and marathons that I could participate in next. A close friend showed me IMPACT Melanoma, a national non-profit organization that provides education, prevention and support for skin cancer. Not only was this an organization that I was truly passionate about, they had a team for the 2019 Boston Marathon.

Boston has been my home since I went to college in 2010. I have cheered on many runners through the years with hopes to one day cross the finish line myself. Knowing that the Boston Marathon is one of the greatest and most prestigious races in the world, it has always been on my bucket list. I couldn’t think of a more fitting organization or race to participate in. I quickly filled out an application to join IMPACT Melanoma’s team for the 2019 Boston Marathon on April 15th, 2019.

I was grateful to be accepted by Team IMPACT in December. Since joining the team, I have raised over $9,000 towards efforts to reduce the risk of melanoma. My diagnosis may have forced me to sit on the sidelines for the 2018 Bank of America Marathon, but I knew my journey wouldn’t end in Chicago. Raising money to support the mission of IMPACT melanoma by running 26.2 miles in a city that’s grown to be my home is an honor. Crossing the finish line at the 2019 Boston Marathon will be nothing short of an indescribable moment.

Being a part of IMPACT Melanoma has allowed me to spread awareness of the importance of skin safety. I’m extremely grateful for the opportunity and hope that my story and efforts can help to prevent cases like mine.

If you would like to donate to Morgan’s efforts, visit HERE.

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Skin Diaries

Fighting Fires and Melanoma

I’m a firefighter. Someone once lovingly called us a group of “macho bastards”. We’re tough, self-sacrificing, and stubborn. The day my future disappeared, my macho demeanor suddenly changed to extremely vulnerable and fearful.

I was an active, healthy man and a fireman for Pete’s sake. It wasn’t until I became a father that my perception of the need for sun protection changed. Our family photographer, Tracy Callahan, launched the Polka Dot Mama Melanoma Foundation after being diagnosed with skin cancer. I recognized her efforts to raise awareness about the importance or early detection and prevention. She encouraged me to make an appointment with a dermatologist. I went out of support more than anything.

On May 20th, in a quick 15-minute appointment I had one mole on my back biopsied and was sent on my way as the doctor assured me that everything should be fine. Four days later a nurse called and things began to change quickly. The biopsy was malignant, and my doctor was scheduling an appointment at the University of North Carolina.

“Firefighters are diagnosed with melanoma at younger ages—an average of 42 compared with 64 for the U.S. population.”
– The Skin Cancer Foundation

While I was still recovering from this news, the phone range again. It was the oncology department advising me to come in as soon as possible. I was going to an oncologist. A doctor who treats cancer. As I sat in my appointment the next day listening to the doctor use words like “excision”, “margins”, “sentinel lymph nodes”, “out of work for weeks”, and last but not least “cancer”, the realization and shock that I was in trouble really started to sink in.

After spending the Memorial Day holiday with my family and five-year-old son, I went in for surgery on June 7, 2016 to have the cancer removed. It all happened in the course of a morning and I was sent home heavily bandaged with a drain tube in my side, an abdominal binder wrapped around me, and NO idea what was next.

All I could do was try to rest and recover while I waited for the doctor to call and let me know if they got all the cancer. For days I just prayed and between prayers, I would cry over the life I could lose and what my family’s future would look like without me. Yes, when faced with your own mortality, career firefighters cry. When I finally got word that I was in the clear I wanted to scream from the rooftops! I immediately shared the news with my friends, family and coworkers, all of whom had been so encouraging and supportive.

I owed my life to Tracy Callahan and Polka Dot Mama. She got me to get checked. She saved this stubborn fireman’s life. Literally. What shocked me was that she was the only source of the information I needed to survive. Tracy was the only one that made me aware of the dangers of skin cancer. I wanted to make sure my friends and family were safe. I wanted to protect my firefighting brothers and sisters from skin cancer.

“Men are more likely to die of melanoma than women. This is true at any age.”
– American Academy of Dermatology

Cancer is not a new word around the firehouse, we are exposed to some of the most toxic carcinogens known to man. Firefighters experience cancer-related deaths at a 14 percent higher rate than the U.S. general public. We often focus on our lungs, or prostate, but our largest organ is our skin, and it absorbs everything. As fellow firefighter Mark Rine discovered when he was diagnosed with terminal stage 4 melanoma, occupational cancer is real.

Organizations like the Firefighter Cancer Support Network are working to remind firefighters of the importance of taking steps to protect themselves on and off the job. I’m doing my best to help spread the word wherever I can. I now bear the scars to show what not being sun safe can do to your body. I’m certain that the people around me, especially my colleagues, are sick of hearing me get on them about being sun safe and wearing protective clothing AND sunscreen. But you know what? If I save just one life, just one, it will have been completely worth it.

Story originally shared by Polka Dot Mama on June 23, 2016.

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Skin Diaries

Vitiligo Patient Loses 100% of Her Skin’s Pigment

It was the perfect day to get married. The sun was bright, the weather was warm, and the beautiful valley stretched out around the field where the ceremony was taking place. Love was in the air and each moment of the ceremony was heartfelt and touching. Unfortunately, I missed most it. I was huddled under an oversized umbrella in the back row, trying not to burn in the sun as the couple said their “I do’s” – because skin without pigment can quickly turn pink.

I was seven years old when I was diagnosed with vitiligo. The little white spots on my spine seemed innocent enough, but the doctor had a different story. My mother was familiar with the disease – her mother, my grandmother, lived with vitiligo for most of her life. Still, she was devastated to hear the news, and worried about what this might mean for me.

Vitiligo is an autoimmune disease that causes loss of pigment, resulting in white spots on the skin and occasionally, loss of pigment in the hair too. About 1% of the world’s population (50 million people) has vitiligo and the condition affects all races and both sexes equally. Since the cause of vitiligo is unknown, there is no cure and treatments are often unpredictable and can vary in results.

It turns out, my vitiligo was aggressive. Although it started on my spine and knees, the spots quickly spread to the point that treatments were ineffective. We just couldn’t keep up with it, and I chose early on not to pursue treatment any further.

Growing up, it wasn’t unusual for me to have three colors of skin – tan, white and pink for my normal skin, my vitiligo and my burned vitiligo. In fact, this tri-color look earned me the nickname of Neapolitan in college. Staying sun-safe wasn’t necessarily hard – I just tended to forget.

Today, twenty years after my diagnosis, I’ve lost 100% of my skin’s pigment to vitiligo. With no color left in my skin, my complexion rivals that of Snow White’s – under my tanner, which I wear daily. As a result, protection from the sun is a requirement at this point in my life. Being exposed in the sun is just uncomfortable – in other words, I can’t forget.

Rachael Laurin Photography

Avoiding the sun is just another aspect of life I’ve learned to live with. I’m the girl who can’t go to the beach without an umbrella, and often a rash guard too. I’m the friend who makes the waiter switch our patio table to one with shade. I schedule my days around the sun’s rays and try to go outdoors in the early mornings or evenings after the sun begins to fade. I always ask about the shade situation for any outdoor activities – and excuse myself when appropriate.

Of course, I still get burned from time to time, despite my best efforts. That’s why I’m thankful for companies like Coolibar that not only provide education on sun safety but create real solutions to enjoying the sun without risking sunburn.

 

You can learn more about vitiligo and my journey at livingdappled.com, a lifestyle blog for girls and women with vitiligo.

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Skin Diaries

Nicole O’Neill: “I Was Fortunately Diagnosed with Cancer 3 Times”

It’s still hard to believe, but by the age of 30, I was fortunately diagnosed with cancer 3 times, faced over a dozen other precancerous scares and experienced some heart-wrenching losses due to cancer.

Yes, you read that correctly, I said I have been fortunate. You are not crazy.

However, I have not always felt this way. Each time there was a period of total fear, confusion and almost paralysis. I cannot quite explain what it is like to get that news and be afraid for your life. It truly stops you in your tracks. Everything becomes blurry, nothing seems to matter and all you can think is, “Am I going to die… Did I really live?”

But each time I was blessed with a whole new perspective on life. I learned so much more about who I was and what I wanted my life to stand for…

My first melanoma opened my eyes to how little self-confidence I had and how superficial my life was.

I am totally guilty of spending countless hours in the sun, tanning booths and wearing the oil. Truthfully, I didn’t really know any better when I was younger. Even though I had a handful of spots removed in high school, it didn’t really sink in until I was diagnosed with my first melanoma at 24. Looking back, all I remember was that I felt so much better about myself when I was tan. I was very fortunate that we caught the melanoma early enough, so surgery was all that was necessary. But so much changed with this diagnosis. Suddenly, I became aware of the superficiality of my life. How much of my self-confidence came from “being tan & looking good”. I consider this my first wakeup call in life. If it weren’t for this diagnosis, I may have never started to take better care of myself from the inside out. I learned to make self-care a priority, and more than anything it started the journey of true self-love for me. It made me want to be a better person and with that I learned that beauty and confidence are about so much more than what’s on the inside.

My second melanoma woke me up to just how precious life is.

After my first melanoma, my health and sun safety became a top priority. You can imagine my frustration, my fear when I was diagnosed with a second melanoma 3 years later. I remember thinking “but how!? I have been doing everything right. This is so unfair!” Initially, it was numbing. But then, once I processed the news, I realized pouting about it wasn’t going to change it.

After my 2nd diagnosis, I made a promise to myself… I’ve been given another chance here. This life, it’s not something I am going to waste. With that, I started to live with the end in mind. You could say I started to live a bucket list life.

I couldn’t be in the sun anymore, but I could be more adventurous. It sparked my passion for new activities way out of my comfort zone.

It helped me shift my priorities… I stopped putting work first and spent more time with my friends and family.

I refused to just go through the motions and put off all the things I really wanted to do. Instead, I started to be so much more proactive with my life. I started a business that would allow me to feel more fulfilled, made traveling a non-negotiable, became more charitable, committed to ongoing growth and I could go on. You could say I completely leveled up my life after my 2nd melanoma and looking back the diagnosis was a catalyst that changed the trajectory of my whole life in such a positive way.

Over the next few years, I would face a couple more pre-cancerous scares and then be diagnosed with thyroid cancer when I was 30. We still to this day are not sure if that was related to the melanoma. But I am forever grateful to my dermatologist for his care and help through this time. This was probably the fight that hit me the hardest. Truthfully, I was pissed. I was sad. I was terrified. And then when I almost lost my voice… I was broken.

Getting through this time was tough, but what finally pulled me through was finding a spiritual outlet and thinking of all the people who had not been so fortunate in their own fight. I could go on and on telling you about all the lessons and life shifts cancer has exposed me to. But the most powerful thing I learned is that bad things happen. There might be times when life tries to knock you down and you cannot control that. However, what you can control is how you choose to react to it. You can choose to crumble, or you can choose to feel the emotions, feel the fear and the pain… but then let it wake you up in life and use it as a catalyst for living your life more intentionally.

We all only get one life and it’s ours for the taking. I pray you never have to face such terrifying wakeup calls, but if you do, please know that there is some positive that can come out of it. It might be hard to see initially when you are trying to navigate through the fear, but you are powerful, you have a purpose here. Have hope, fight like hell and focus on doing whatever you can to move forward, even if it’s just one tiny step at a time.

XO Nicole

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Skin Diaries

Trapped and Lost, a Lupus Patient Makes a Radical Call

I’ll never forget the day my family moved from Long Island, New York to Fort Lauderdale, Florida when I was a child. Sunshine, sandy beaches, and just about every outdoor sport and activity at your fingertips all year long – it seemed like paradise. But as I grew into a teenager and young adult, being in the sun started to not sit well with my body. A weird rash would rear its head within a few hours, fatigue, sores, and other strange flu-like symptoms. My family and I always brushed it off as “too much sun,” and anyone who has graced the beaches of Fort Lauderdale knows the intensity of the sun’s rays in that area.

But when I was unexpectedly diagnosed with Lupus at the age of 23, the photosensitivity made complete sense.

Up to 70% of lupus patients deal with some sort of photosensitivity, meaning their symptoms get worse or are brought on by UV rays and/or heat. Today, just five to ten minutes in moderate sunlight can knock me down for days. I also learned any UV ray can set off a lupus flare, even certain types of indoor lighting.

As the years progressed, and my disease activity worsened, I tried so hard to stay out of the sun – almost an impossibility when living in South Florida. Suddenly, I became a prisoner in my own home, not able to enjoy outdoor activities or even a walk with my husband until after 7 or 8 p.m. And photosensitivity wasn’t the only Lupus symptom I was dealing with. In addition to symptoms from sunlight, I was also dealing with fevers, mini-strokes, blood involvement, and a brain aneurysm. The Lupus became so severe at one point, I became wheelchair bound and couldn’t leave my house for months. Sunshine, people, outdoors and life, in general, bustled around me and I felt trapped.

It was around this time that my husband convinced me to take a road trip north to New York  (where we were both born). Fall season had just started and the weather was cooling off; we thought it may be an ideal time to go as the heat and sun wouldn’t be intense.

Little did I know, it would be a life-changing trip.

We spent three weeks in our home state, visiting family and friends, and doing a good amount of exploring. And then we came to a revelation. I hadn’t had nearly as many fevers, wasn’t as fatigued, and wasn’t taking as much medicine as usual. The main difference we noticed was the weather. We hit a cold front while on our trip and most days were overcast and in the 40s. Though some Lupus patients actually feel better in the heat, it seemed the cold weather worked wonders for my body.

And then we did the unthinkable – packed up our entire life and moved back to New York six weeks later, not too far from Niagara Falls. The winters are brutal…and to be honest, I love every minute of them. The love affair between me and the cold weather is still going strong almost six years later. Of course, I do love the sunshine of summer and hiking near local waterfalls. But I have something in my “toolkit” now that I didn’t have 17 years ago when I was diagnosed – Coolibar clothing.

I remember the first time I heard about Coolibar and thought, can you really wear something that will protect you from the sun?  It sounded genius and perfect for people like me. Their long-sleeve t-shirts, rash guard, and wide-brimmed hats are my favorites and all perfect attire for somewhat sunny days here in Western New York.

I still have my ups and downs with lupus. Typically, I get IV treatments almost weekly at a nearby hospital, but the disease hasn’t broken my adventurous spirit and love for life. On my good days, I enjoy yoga, cooking, and creating the perfect recipe and food photo for my job as a food and health journalist. My husband, our rescue dog and I still love road trips and exploring – except now we venture to the coldest places possible. Two recent adventures have been Alaska and Nova Scotia (both gorgeous)… and you better believe my arsenal of Coolibar comes with me every time!

If you or someone you know has lupus, I’d love for you to come join us at LupusChick.com, a nonprofit autoimmune community I started 10 years ago. There we talk about every subject you can think of when it comes to chronic illness!

See you there.

XO Marisa

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Skin Diaries

Betty Hall: “Sunburn after sunburn, I never learned my lesson.”

As far back in my childhood and adult life as I can remember, I have had countless sunburns. I have had some so severe that it hurt to wear clothes or lay down. One time, when I was a teenager living in Midland, Texas, I put on shorts and a backless halter top and thought I would surprise my parents while they were at work by trimming the edge of the lawn. We didn’t own an edger to trim the yard, so I did the entire front lawn with a pair of sheers while on my knees all day and my back and head uncovered. My back later that day was covered in huge water blisters from being so sunburned! From vacations to family outings, there have been numerous times that I burned in the sun and ruined the entire occasion. None of those times did I put on sunscreen or cover my head with a hat. Heck no, that would look stupid, I sadly thought. Later as an adult, I would visit the tanning beds in the summertime so that when we went on vacations, I would have my body use to the rays and I thought that would keep me from burning as bad. It would work sometimes, but little did I know that all the past UV exposure would soon come back to haunt me.

1997 was the year it all started, my beautician found a tiny red spot on the top center crown of my head. It was merely a small, red spot! No itching, no bleeding, no scabbing. My MD referred me to a Dermatologist whom I saw for a biopsy. Two long weeks later, he called me at work to tell me he found cancer cells. Just that word alone was upsetting. I went back to that same Dermatologist to have a larger biopsy on the same area done with even more stitches. He sent it off to the lab and sure enough, another two weeks passed again and he called to let me know the cancer cells were still present. I was scheduled to see him a third time when right before my office visit, word had travelled to my husband’s boss, who happened to be head of surgery in El Dorado, Arkansas. They quickly prepped me for surgery as soon as I arrived. They did a scalp sweep and did a skin graft off my right thigh to cover the bone. Over a hundred stitches and a metal cap later, the surgery was finally over.

The procure may have been done, but nothing could’ve prepared me for what I would see in the mirror. To be fair, how could you ever tell someone they had a 2-centimeter-deep hole on the top of their head and explain to them that the hair would never grow back. It’s a tough pill to swallow to know that this was the result of my careless past. But, my surgeons said they were hopeful they got it all and at the end of the day, I was lucky this tiny, red spot was caught.

Over 20 years have passed since then and I’ve dealt with numerous other surgeries along with hundreds of appointments. I cannot blame anyone but myself for what I have done by being unprotected all those times in the sun. Sunburn after sunburn, I never learned my lesson. How foolish! I wish I could go back and undo the wrong but I can’t because the damage has already been done. But if you’re reading my story, it’s not too late for you. Educate yourself on the dangers of UV exposure. Take time to put on sunscreen or a hat. Don’t lay out in the sun to get a tan or in a tanning bed just to look good to your peers. Check your body whenever you get a chance.

Learn more about Betty’s story.

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Parenting Skin Diaries

This 6-Year-Old With Albinism Won’t Let the Sun Slow Him Down

When our son Carter was 11 months old, we found out that he had Oculocutaneous Albinism Type 2. (Or OCA2) What that means is that he has less pigment in his eyes, hair, and skin. So basically, it’s the reason for his insanely cute blonde hair and eyelashes. But it’s also why we made protecting his skin a main priority. After the diagnosis, we soon learned that Carter’s chances of getting skin cancer were greater because of his Albinism. That word. Cancer. As parents, hearing that was terrifying, but it also made us want to do whatever we could to keep him (especially his skin) safe.

When we found out about this, we were a month away from going on our first family vacation to the Virgin Islands. We met with a dermatologist who stressed the importance of sun protection. He talked to us about sunscreen and told us not to forget areas like the scalp and the tops of Carter’s ears. I immediately began searching for the perfect hat for him to wear. We needed to know that our baby was going to be completely protected. Not only on the beach, but anytime that our family ventured outside. We didn’t want to take any chances of him getting the slightest sunburn. My mother in law was the one who discovered Coolibar, where we found so much more than a hat. We found swimwear and clothing, but most importantly we found a peace of mind.

5 years later, we are still using and loving our Coolibar gear. Not only do we have the Albinism to worry about, but our son was also later diagnosed with Autism. Due to both the Albinism and the Autism, Carter struggles a lot with light sensitivity. Being in the bright sun for too long can really shut him down and cause him to get headaches. Therefore, Coolibar’s Kids All Sport Hat is a favorite of ours. Not only does the bill of the hat help shield his eyes from the sun, but the flap protects his ears and neck from potential burning.

While we still use sunscreen, it’s hard to always remember to reapply as often as is needed. Coolibar has taken the pressure off, by providing additional UV protection. It’s nice to know that there is a product out there that meets all the needs that our boy has. When he initially got the diagnosis, we were afraid he wouldn’t get to experience the outdoors as much as we would like him to. Now, two of Carter’s very favorite things are water and adventures. Thanks, Coolibar, for allowing us to still have these experiences, worry-free.

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