Category

Skin Diaries

Skin Diaries This is Brave

This is Brave: Cheryl Stratos

Melanoma arrived on the scene and changed my life on September 7th, 2009, the day after my 45th birthday. It started with a strange feeling of numbness all over as though my body was starting to short-circuit. I went in for tests and they concluded that I likely was experiencing the onset of Multiple Sclerosis (MS). I went from being an active, healthy person without even a regular primary care doctor, to someone with a neurologist. How could this be happening to me?

Fast forward 77 days to November 23rd, I didn’t have MS. In fact, I had Stage IV Metastasis Melanoma, which means my cancer had spread to other organs of the body and I had about six months to live, eight if I was lucky. I wasn’t pleased with that prognosis and went looking for an alternate answer. I discovered that there had been no progress toward extending the life expectancy in Stage IV Metastasis Melanoma for nearly 15 YEARS!!! So, it was time to experiment and hope for a breakthrough with a clinical trial.

I hired my own personal CANCERierge – also known as my husband Mike – and we set out to navigate the cancer maze, ask questions, take notes and find a trial. It wasn’t easy, but Mike approached it with an open mind and humor – a strong medicine for any stage of cancer. After a somewhat nation-wide search, we found a trial at UCLA.

I began treatment on February 28th, 2010 (for those of you counting, I had roughly three to five months to live at this point). I started taking a drug called PLX4032. It lasted for just over three years (and so did I!). The drug—now known as ZELBORAF—stopped my cancer from growing and since then I’ve been labeled “NED” or No Evidence of Disease. I was a super responder! I responded so well that I got the side effects right with the cure—hair loss, skin rash, cysts everywhere, night sweats, nausea, diarrhea, weight gain…talk about a lousy combination!

The great news in 2015, when I was still NED, we decided to try a combination therapy instead of the wonder drug with the side effects to keep my melanoma in check. My CANCERierge and I were nervous, but we decided to BE BRAVE and go for it. As of May 2019, I’m still cancer free.

Through all of this, Mike and I learned a lot. We’ve outlined our “Helpful Hints” on our website www.fightingmelanoma.com.

But here are some cliff notes:
  1. If you want to survive, you need an advocate.
  2. Reach out to friends and family. Open up. You’re going to need them.
  3. YOU need to determine the right treatment path for you. Advocate for yourself!
  4. Get connected with the skin cancer community. The Melanoma Research Foundation became my lifeline along the way.
  5. Be flexible and appreciate what you have. Value each day and each moment.
  6. Start winning your fight!
  7. BE BRAVE!

The doctors never did determine where the cancer started, but instead of showing on my skin, it likely all started in my lung and spread to my liver, uterus and lymph nodes. Despite everything they didn’t know, I survived. I believe the medical community is close to finding a solution for this disease. We are now seeing long-term Stage IV survivor rates hit double digits. It is just a matter of time until we understand how to manage all types of melanoma cancers.

Until then…Be Brave!

No Comments
Skin Diaries This is Brave

This is Brave: Lindsay Zubeck

In March of 2017, at the age of 34, I was diagnosed with Ocular Melanoma (OM). By November 2018, after trying a series of treatments, the decision was made to remove my eye. I thought I had prepared myself and my family for the healing process and emotions after my enucleation, the removal of my eye. We had talked about what it would be like for me to wear an eye patch in public for a few months until my prosthetic eye was made. We prepared for the physical parts of it, but you can never really prepare the emotional part.

The first time I went in public with my patch, my daughter asked me to come close to her and she pulled my hair in front of my patch. I asked if she was embarrassed of mommy and she said yes. We both started to cry but I quickly wiped my tears and hers. I looked into her eyes and said, “This is our life now. We have to learn to get used to it and it will be ok.”

Along my cancer journey, I have always been open and honest with my kids. I’ve told them everything they needed to know in the moment. Many of our conversations have been around “personal problems”. Everyone has problems, which is why it’s important to always be kind as you never know what their problem may be. Mommy’s problem is eye cancer. Some people’s problems are noticeable—like mine—others might have scars hidden under their clothes or emotional struggles deep in their heart or mind. Everyone’s problem is different, but everyone has their own battles.

After my daughter and I had that moment, I decided that even though the emotions were challenging and being in public was hard, I was not going to miss out on life. I have an amazing, supportive family and friends who all love me for me—with or without an eye. Some days, I would love to have the old me back, but the new me is pretty darn cool. I can pop my eye out when I want (most kids can’t say they can hold their mom’s eye) and I’ve learned to truly enjoy life—which many struggle to do.

Ultimately, I’ve learned to be me and I hope I’m teaching my children to do the same.  With my cancer, my family has learned to be flexible, enjoy the moment, celebrate each win, support others and ultimately, embrace and love who they are. My advice to them is the same for you, no matter what you’re going through or what problem you’re facing—Be YOU. What makes YOU special and how can YOU enjoy your best life? How can YOU turn your ‘problems’ into ways to make yourself and those around you better?

As we age, who YOU are will inevitably change. But no matter the challenge your facing, YOU can always be who YOU are meant to be!

No Comments
Skin Diaries This is Brave

This is Brave: Laurie Rivard

It all started with a patch of flaky, dry skin on my face that would come and go. A friend suggested I have it checked, that’s when my cancer journey began…

I quickly became familiar with the term “punch biopsy”. It’s when your doctor takes a tool that punches out a piece of skin for testing. As you can imagine, it hurts! On my very first visit, they found melanoma on my nose and cheek.

I was shocked that this was happening to me. I shouldn’t have been surprised as my face is always exposed to the sun. In an effort to preserve my appearance, I found the best plastic surgeon around. He was as conservative as he could be but left me with a nose full of stitches. It was extremely humbling to have to wear a huge bandage on my face, but I carried on and healed with little scaring. I was so thankful that my friend was concerned enough to get me to a doctor.

Three months later, I returned for my quarterly appointment and had more spots “punched” out of my face and leg, followed by another cancer diagnosis.

At this point, I remember being mad at my mother for not protecting me from the sun. Truth is, there was so much we didn’t know back then, and still don’t know now! As my children got older, we had many arguments about sunscreen and tanning booths. Along with my friends, they saw what I was going through but assumed they weren’t at risk. I had cancer because I was blonde and fair skinned. Not true.

I was learning how lonely skin cancer can be. I was ashamed that I had opened the door for skin cancer every time I tanned without protection. Every three months, they cut out a little more of me and left me with more and more scars. I felt emotionally and physically disfigured and couldn’t talk to anyone about it. I also had to watch my friends and family keep making mistakes I’d made in the past.

I quietly started to change my way of life because I was afraid of the sun. The Caribbean vacations I used to love were no longer an option. When we’d go on biking trips, I was never comfortable unless we knew it would be very cloudy or shady. When we golfed, I insisted on a golf cart. We started to fall off our friend’s list because I was too high maintenance. I was scared!

While I was rearranging my personal life to fit the sun’s schedule, I continued my quarterly visits to the doctor and found more cancer. This time we used a chemo cream that ate away all the skin on my face and chest. I looked like something out of a Frankenstein movie. I joke about it, but inside I wasn’t laughing. I still had to work, which was the extent of me leaving the house. It’s a very lonely disease. How do you talk to friends about this when you’re hiding inside and they’re out enjoying the sun worry-free?

On my next visit, they removed a piece of my chest about three-inches long and one-inch wide and prescribed more chemo cream. It was extremely painful—a truly bloody mess. I’d sleep on my side and the ooze would dry, then crack when I moved. It was very painful and ugly, but I had to do it. I wore a lot of shawls to cover my chest.

While I was recovering from that, I had two more punch biopsy’s and we found melanoma on my back that left a horrible scar. Luckily, that was the last melanoma I had removed. Over the next few years, I was diagnosed with squamous cell, which thankfully could be taken care of with nitrogen.

In January 2018, I celebrated five years without cancer! I left my appointment wondering who I would celebrate with. People don’t think of skin cancer like they do lung or breast cancer, but people still die from it every day. I celebrated quietly with my husband as I scheduled an annual (not quarterly) check-up. SUCH a wonderful feeling.

These days, I have very few moments of shame or loneliness. I know how to protect and care for myself and can make sure others do too. Sun protective clothing has been a God-send. I can get out and golf, ride bikes and enjoy the pool with my grandchildren without as much fear. I’m finally learning to get back in the sun.

I’m also not alone anymore. I am so thankful for the doctors and dermatologists that help diagnose and treat skin damage before it becomes melanoma. Because of them, everyone is more aware of the risks. Because of my experience, I have the power to make sure others know what they’re up against when they go outside. Everyone has to make their own choices, but I have the knowledge to help keep them safe. For that I’m grateful.

No Comments
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.

1 Comment
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.

1 Comment
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.

No Comments
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.

No Comments
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.

1 Comment
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.

4 Comments
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

1 Comment
Show Buttons
Hide Buttons