Skin Diaries

Amy Nichole: “Love the Skin You Were Given”

My name is Amy Nichole. I’m a fine art portrait photographer specializing in children’s & teen photography. For my career, I’m always outdoors and occasionally in the studio. Since birth, I’ve always had very pale skin with freckles and a reddish tone to my hair. At the age of 8, I received an awful sunburn that actually resulted in a birthmark looking design on my right arm and parts of my back. Following the incident, my mother brought me in to see a doctor, but they just pushed it aside and chalked it up as a bad reaction to the sun.

Let’s fast forward to my teens, it was the IT thing to have tan skin. Being of British and Irish descent, my fair skin wasn’t going to tan easily. From laying out in the sun for hours covered with oil to using the tanning spray alternatives, I tried everything you could think of! With all my attempts of trying to fit in, my “birthmark” only got darker and that’s when the moles and spots started to appear.

At this point, I scheduled an appointment to have a dermatologist take a closer look at all these odd-spots, which lead to biopsies left and right. Every single extraction the doctor performed and examined came back as pre-cancerous. Although disheartened by the results, I’m thankful that this first scare educated me on the importance of constantly checking your skin and prepared me for the future I had ahead.

I’d begun getting skin checks every 3-6 months and made my skin health a top priority following my time with the dermatologist. During a personal ABCDE (Asymmetry. Border. Color. Diameter. Evolving.) in June 2016, a spot on my upper chest had drastically changed in size. I expressed my concern to my dermatologist and she agreed that biopsying would be appropriate. THANK GOODNESS I was so proactive! 4 days later, she personally called me to say that it was melanoma and was at Stage 1B and very close to transitioning to Stage 2. We scheduled my first excision quickly and successfully removed the melanoma before it worsened.

Since that day, my life revolved around taking care of myself while outdoors. I started always wearing long sleeves, hats, pants, you name it! That’s when I was introduced to Coolibar from the surgeon who performed my surgery. With my line of work and living in Nevada, I’m always outside and it gets difficult to cover up with the extreme heat, but I’ve been able to make it work.

After two years of being cancer free, I had my next scare. I began seeing a new dermatologist that was very highly recommended in the area, working with celebrities and high-profile individuals. After switching though, I just never felt like we were on the same page. For months I was still doing the 3-month check-ins to be safe but at one point he’d insisted for us to make it a checkup once a year – I declined this suggestion quickly. In February 2019, I was still with the same dermatologist and we came up to our eventually agreed upon 6-month appointment and I came in with concerns of a new spot that had randomly appeared. There was a little back-and-forth on next actions but I requested he take no chances and biopsy.  Just a few days later, he called me to let me know that “random” spot was, in fact, Stage 1A melanoma. While having my first Mohs surgery, they had to go in 3 times, so the whole operation was over 6 hours. During the visit, I requested the surgeon biopsy one other spot that had grown over a scar I had from a pre-cancerous removal. Guess what! Those results also came back as a 3rd melanoma diagnosis.

I’ve finally been upgraded to an oncologist for further testing. I’m not going to let this bring me down or define me whatsoever. I have an amazing support system and know it’s not going to be an easy road ahead. But, the scars and the love I have from everyone is what’s going to help me get through this. I even put on a special portrait session for 12 kids, that was inspired by the “This is Brave” Campaign, and we raised $900 for the Skin Cancer Foundation. You can see a lot of the images from the photoshoot within my blog! I wanted to help the younger generation be more aware about protecting their skin.

After reading my journey up to this point, I want you to take a little advice. We do need to put our faith in the doctors but also you NEED to be your biggest advocate. You are the one that sees your own skin 24/7. Protect yourself, love the life you live, scars are beautiful, and they will never define you. But most importantly, love the skin you were given.

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Together We Will

Together We Will… Help All Children with Sun Sensitivities!

By: Karene Boos, founder ZeruZeru Simama Sasa!

ZeruZeru Simama Sasa! has two meanings. Literally, it means “People with Albinism Stand Up Now,” (encouraging them not to be afraid); secondarily, it can also mean “Stop Prejudice Against People with Albinism Now!” 

ZeruZeru, Inc. is a non-profit 501c3 organization incorporated in the United States. ZeruZeru was started by attorneys Eric and Karene Boos in 2013 for the purpose of securing human rights of the poor and vulnerable in Tanzania–especially persons with albinism.

Albinism is a genetic condition that results in a lack of the production of the pigment melanin. This means that people with albinism are very sensitive to light and sun exposure. They are at risk for severe sunburns leading to skin cancers, other skin disorders and sun-damage thickening of the skin. People with albinism also have vision impairments related to the lack of melanin.

Beside the increased skin cancer risk, people living with albinism in Tanzania are living in fear for their lives. In Tanzania, those with albinism are at risk to be hunted, abducted and mutilated for their body parts for use in traditional medicine and mystical belief practices. A complete set of body parts from a person with albinism can bring in up to $75,000 on the black market, according to a 2009 report by the International Federation of Red Cross and Red Crescent Societies. The Government of Tanzania has taken important steps to tackle the problem of ritualistic violence against people living with albinism, but extra protection is still needed.

Often the families of children with albinism cannot provide security for their children in rural areas. The primary goal of ZeruZeru is to establish a sustainable, self-sufficient, safe-haven campus for children with albinism and some children with physical impairments. With the help of Helena Ntambulwa at Mary Mother of God Perpetual Help Center in Tanzania and her staff, ZeruZeru is currently caring for nearly 70 children.

The Center provides a safe environment for the children to learn, grow, play and be integrated into local life. The children are provided with access to education, general health care and daily preventive skin care. The Center also educates the families and friends of these children about the health risks associated with their lack of pigment and the importance of proper sun protection. Children often arrive at the Center with severe burns on their skin. Because of the lack of melanin, it is vital to their health that they wear UPF 50+ clothing that blocks 98% of all UV rays.

UVA rays, which penetrate the skin more deeply than UVB rays, contribute to and may even initiate the development of skin cancers. As opposed to UVB rays, UVA rays can also penetrate most fabrics.

Skin Cancer Foundation

We’re grateful to Coolibar for its commitment to helping protect our children by donating hats, gloves, long sleeve shirts and beautiful dresses and tunics. Beyond keeping them safe, it’s our job to help these children thrive. With UPF 50+ clothing, they can get out and play, learn and explore!

Please visit our website at www.savethealbinochildren.org or contact us at info@savethealbinochildren.org for more information.

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Skin Diaries

A Mission That Goes Beyond a Career

“Dry skin, maybe psoriasis, it’s nothing”, that’s what 3 different dermatologists told me when I asked about a small patch of skin behind my left ear. It came and went over at least 10 years and sometimes itched and felt dry. Sometimes I could barely feel it. I obviously couldn’t see it and they were the experts, so I assumed it was just my sensitive skin acting up. Maybe I didn’t wash behind my ears enough?

The itchy, dry patch behind my ear was basal cell cancer. Ironically, I was diagnosed 2 weeks after I started working at Coolibar. As VP of Brand Marketing and Creative Services at the time, I was immersing myself in the mission, sun-facts, warrior stories and education about prevention and our unique sun-protective clothing and accessories. It was kind of like Googling “skin cancer” except the knowledge I had gained in my first few weeks at Coolibar was completely factual. I had a heightened awareness of the potential consequences of my diagnosis. Although basal cell cancer is slow growing, I’d had it for over a decade. The voice inside my head immediately began cussing every derm who has ever looked at it and not taken the step to biopsy, even when I was advocating for myself. I was really angry! But that quickly turned into thankfulness for my primary care doctor who had referred me to Dr. Mary Meighan, who listened carefully, asked thoughtful questions and took her time during my annual skin check. I wasn’t even going to say anything about that itchy patch, but I did. Thank goodness.

I have practiced sun-safety for the majority of my life. During my teen years, I realized that even if I was tan, no one noticed because my skin is naturally very pale. So, while everyone else was tanning, I decided to be a rebel and achieve the palest skin possible. That said, I remember getting burned. In fact, there is a family story about me falling asleep curled up in a fishing boat and getting sunburned across the exposed strip of skin between my top and pants around age 3. I personally remember getting a brutal burn on my back as a teen, after spending the day at a surfing lesson with only SPF 30 lotion to protect me. My father got diagnosed with melanoma in his late 70’s. I knew it was in my cards. But, as they say, nothing prepares you for that diagnosis.

The suspense was killing me. How bad was it? I felt humbled by my vanity. I didn’t want a big scar. But the bigger fear was that I didn’t want cancer or any limitation from being a mother to my 10-year old daughter. Dr. Meighan referred me to her colleague at Zell Clinic, Dr. Karl Vance for Mohs surgery. I arrived for surgery and told him that I worked at Coolibar and that I was going to write a blog about my experience to help educate and support others. He was immediately all in and couldn’t have been more accommodating, narrating his every move. He even let me go behind the scenes where he was literally looking thru a microscope at the skin graft he’d just taken from behind my ear. He was making sure he got all the cancer in his first cut and wanted to see a minimum 2mm edge of clean cells all the way around the cut and he said, with some well-earned pride, that it was important for him to retain his stellar record. 99% of his Mohs surgeries got the cancer with the first cut. His record remained intact and so did my ear.

The cancer hadn’t gone very deep and only a little over an inch around. It was tiny compared to the skin cancer warrior’s I’d met on the Coolibar blog. I didn’t need to experience skin cancer to want to work at a mission-driven company like Coolibar. I already knew that tan skin is damaged skin and sun protection promotes anti-aging. My friends who worshipped the sun in their younger years now look their age and I, the eccentric pale girl, often pass for younger. But here I am, a cautionary tale, waiting for the next diagnosis. Hoping it’s not the big M. Take care of your skin! Get skin checks by a qualified dermatologist. Check your loved ones. Self-advocate with your doctors. Spread the word. That’s what I’m doing at Coolibar.

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This is Brave

This is Brave: The Inspiration Behind the Campaign

In 2018, we were introduced to a young girl who inspired our entire organization to “Be Brave”. When her brother Graham was ready to give up after five years of treatments and surgeries for his pediatric melanoma, Quinn reminded him to be brave. He could do it!

Quinn and Graham’s entire family continues to show us, and everyone in the greater melanoma and skin cancer community, what it means to “Be Brave”. Since Graham was first diagnosed, they continue to advocate for education, prevention and research. In fact, they got their start by raising more than $34,000 for cancer research by selling bracelets, which got the attention of President Barak Obama. To learn more about their work visit: www.facebook.com/Grahams-Gift.

This April, Quinn, her mother Cheryl, stepfather Bob, and brothers Graham and Charlie, stopped by the Coolibar offices to talk about the past year and what it has meant to them to “Be Brave”.

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Skin Diaries This is Brave

This is Brave: Holly Rowe

In 2014, I had a suspicious mole on my chest biopsied and was told it was fine. Nearly a year later, the scar was healing in a raised, strange way. I didn’t really notice until I went to an event in a sheer evening dress and the scar appeared to be a huge lump. I went back to my dermatologist to get a second biopsy.

THE call came while I was in NYC shopping for an Emmy Awards dress in honor of my nomination for a national Sports Emmy. The doctor told me I had a rare form of Desmoplastic Melanoma. I wasn’t really that worried because I was so uninformed about this deadly disease. I thought they would just cut it out and all would be well. Instead, I have been in the fight of my life since that day.

As it turns out, the type of melanoma I have is rare. 3 in 1 million people get Desmoplastic Melanoma and its usually farmers or people who work in the sun. I am not making that up. I was so DUMB not to cover up and protect my skin. I don’t believe in living in the past, but I REALLY wish I could go back and change things. Specifically, the following…. which I hope you take to heart:

  1. DO NOT TAN I was a tanning queen in high school and have worked outdoors at college football games for more than 25 years. Melanoma is 86 percent preventable. WE MUST PREVENT IT!
  2. TAKE YOUR DIAGNOSIS SERIOUSLY I didn’t in the beginning. I always thought “It will be fine” and then it wasn’t. At every stage, I was presented with more aggressive treatments the doctors didn’t push so I declined to not miss any work. Looking back, I would have chosen THE MOST AGGRESSIVE treatments at every turn.
  3. GET A SECOND OPINION I wish I had every step of the way. Doctors, while well-meaning, CANNOT KNOW what is truly happening inside of your body. What I have learned is that melanoma spreads quickly and is DEADLY. Attack it aggressively, be vigilant in screening.

The initial spot on my chest turned out to be a large tumor under the skin, it was removed along with several cancer-free lymph nodes. Yet, six months later, I had another tumor under my arm. A more significant surgery removed the tumor and 29 lymph nodes. Still, no sign of another spread even after a high dose of interferon chemotherapy. Then we found a tumor in my lung.

Through all of these surgeries and treatments, I don’t think it really dawned on me that melanoma could kill me until a nurse practitioner said, “Tumors in your lung used to be a death sentence.” That caught my attention. Later, another doctor told me to start considering how I was spending my time in life. I started waking up from dreams where I died. SO grateful that they were just dreams… But were they?

I am one of the lucky ones. The immunotherapy is saving my life. After two years of treatment—which involves infusions every 21 days—the tumors in my lung are shrinking. I am so grateful to Aim at Melanoma and the Melanoma Research Foundation for funding research to help eradicate this deadly disease. I am feeling so much better and have been able to keep a busy work schedule covering more that 80 games a year for ESPN. It hasn’t been easy working days after surgery with drains still stitched into my side or being bald on TV.

I had a wig named “Wanda” to wear on camera but had to get rid of her due to itching and being too hot. I went to a Texas football practice bald thinking I wouldn’t see too many people there. Then the World’s Sexiest Man sauntered into practice. I have only one picture of me with Matthew McConaughey and I look like Mr. Magoo.

Throughout all of this, I have had so much love and support from the teams, coaches, athletes and their families. The head coach of the University of Alabama, Nick Saban and his wife Terri sent me a box of specialty apples to keep the doctor away. WNBA MVP Breanna Stewart designed shoes for me and wore them during a Seattle Storm game to Stomp Out Cancer. My son, McKylin has been a huge help and support. Everyone has helped me stay positive.

As I keep fighting, there have been some crazy moments that, even in the fight of my life I have thought, “Oh, I need to get a little sun. I need to get a base tan.” I am shocked at how conditioned I am—we are—to keep thinking a tan is beautiful. What I know now is that tan can kill.

I’m changing everything about the way I work in the sun. I researched clothing to help protect me while I cover games and found Coolibar. Since we’ve connected, they’ve helped me put together cute, sun-safe outfits.

My takeaway for everyone reading this…

Melanoma is the leading cause of cancer death in young women ages 25-30 and the second leading in women ages 30-35. Be protective of your skin, get screened and be persistent. “It’s probably nothing” nearly killed me. PLEASE… When in doubt, check it out.

Thanks to all I’ve been through, I am a better person and am living my best life.

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Skin Diaries This is Brave

This is Brave: Eric Martin

It all started in 2011 with a stubborn scab-like spot on my back. I ignored it thinking it would go away on its own, but after it started to change colors and even bleed I decided to see a dermatologist. While in the waiting room, I was surrounded by posters of melanoma. It looked just like the mark on my back. Before the doctor had even said a word, I knew I had it.

“Am I going to die? What’s going to happen? What’s next?”

Up to this point in my life, I had never really been to a doctor before. I’d never even broken a bone! I was confused and scared. Even more so when my oncologist told me I had a 50/50 shot. Thankfully, my response was to have faith and put my game face on. I found a doctor who specialized in melanoma, Dr. Gregory Daniels at the University of California San Diego Moores Cancer Center.

Treatment started with surgery and adjuvant interferon, but it was soon discontinued when another lump was found with more melanoma. The cycle of surgery and interferon was repeated – but the reprieve was short lived. In August 2012, follow-up scans revealed 20 ‘relatively small’ tumors all over my liver. This time, surgery and interferon weren’t going to be enough. My doctor and I decided that the best bet was enrolling in a promising trial investigating tumor-infiltrating lymphocyte – or TIL therapy – at the National Institutes of Health with Dr. Steven Rosenberg. Some patients were seeing incredible results, which of course were not guaranteed.

At this point in my life – late 2011 – the stakes seemed higher than ever. My wife just found out she was pregnant with our first child which would be my second. Luckily, the TIL therapy worked. In fact, it was considered a “complete response,” meaning that I wasn’t necessarily cured, but signs of cancer had disappeared. It was a great year for me. My beautiful son was born, I was cancer-free, and things started to look up. Then, three green dots appeared on my right pectoral.

Immediately, I started a second clinical trial examining the experimental combination of nivolumab + ipilimumab. After my first infusion of ipilimumab, I landed in the hospital. The side effects of the immunotherapy were so extreme that I had to drop the ipilimumab altogether. Nivolumab and surgery kept the tumors at bay, but eventually, the spots came back. Tumors were now visible under my skin, and biopsies confirmed, every single one was melanoma.

I started interleukin-2 (IL-2) and over two sessions had 50-60 doses of the medication infused into my bloodstream. Once again, the side effects brought on by activating the immune system reared their ugly head. In all honesty, I wanted to die. It was horrible – easily the worst treatment I’ve ever gone through. I had every side effect that they warn you about. What’s worse, it was all for nothing. The IL-2 didn’t work.

The next two clinical trials I enrolled in were based on vaccines that were injected into my tumors. We saw some results, but the tumors continued to grow. We then tried Keytruda by itself, but after six doses the tumors still continued to grow. At this point, Dr. Daniels had run out of trials to enroll me in, but I was determined not to give up or lose hope.

In late 2017, I tried a new approach and a new clinic three hours north of San Diego, Dr. Omid Hamid at The Angeles Clinic. I’ve been through two clinical trials with Dr. Hamid now and our battle to keep my tumors at bay seems never-ending. But there is a silver lining. My experience motivated me to start my own prevention-focused non-profit organization called Stage FREE Melanoma. I don’t want people to have a story like mine. I want to make a difference. Stage 1 stories are so much easier. If we make early detection easy, fewer people will reach an advanced stage of cancer.

In 2019, we’re launching our mobile dermatology bus to offer free skin screenings and education on melanoma prevention at local parks and beaches in Southern California. We had an amazing “Build the Bus 5K” to raise funds to outfit the bus and get started. It’s going to be a great year for early detection and prevention!

People ask me how I stay positive after nearly a decade of trials and surgeries. I have faith. I know that researchers across the globe are working every day to crack the code and find a treatment that will work. Even if they haven’t beaten my cancer, clinical trials have kept me alive. After nine clinical trials, ten surgeries and more infusions than I can count—I’m still here, eight years after being diagnosed with melanoma. I’ve had ups and downs and have tried practically every FDA-approved therapy for melanoma – but the crux of my story, which all readers need to understand, is that my fight isn’t yet finished. I’m still searching for my silver bullet and the elusive letters N.E.D. (no evidence of disease). In the meantime, I have no intention of letting melanoma get in the way of life. I have faith and I’m going to put it to good use.

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Skin Diaries This is Brave

This is Brave: Bradly Tomberlin

I was the third person in my family to get melanoma. Not because my family had a genetic form of it…I was simply the third.

My dad Paul had a spot removed from his hand in his 30’s (the 1980’s) and on his scalp and face after he had a heart transplant in 2008. The anti-rejection drugs he had to take effected his immune system and put him more at risk. My sister Natalie also had a melanoma removed but was lucky to catch it early. So, we all knew about melanoma, but generally never thought too much about it.

Throughout my adulthood, I’ve been a male model. Which, for the sake of this story, means that I have had regular visits with a dermatologist – who did, in fact, remove a few moles and things to stay “on the safe side”. Although I was keeping up with my regular appointments, I still was outdoors a lot trying to get a tan and keep what I thought was a good color for modeling. In my younger days when I did more fitness jobs, I was always tan and laying out and even went to tanning beds. It was what you did to get and keep jobs. Just part of the career.

When I lost my mother Sandra to pancreatic cancer in 2016, I was checked to make sure I didn’t have the gene that linked pancreatic cancer and melanoma. Luckily, I didn’t have it.

Then, in January 2017, when I was 42, I had a weird bump on my head that almost felt like a pimple. I kept scratching at it for months thinking it would eventually go away. I finally showed it to my wife Julie, who is a pediatrician and she had me get it checked.

My dermatologist saw it and seemed to know pretty quickly; it was melanoma. She biopsied it right away and rushed the results. Yup. Melanoma. At this point, I was pretty shocked. Finding out you have melanoma is a pretty big bummer. When they said they’d have to cut in wider and deeper around the mole to makes sure they got all the cancer, I got pretty scared and anxious.

They ended up taking a pretty deep-sized cut from my head and creating more scars when they removed the closest lymph nodes in my neck to make sure it hadn’t spread. Thankfully, this is where the fear over my mortality and not knowing how sick I was started to pass. I had a great plastic surgeon help put my scalp back together and my fears moved to my career.

At this point, I was 42 and had been a model for 25 years, but I’d never considered ending my career yet. When it came time to face surgery and plan for the aftermath, I had enough sense to try to salvage my career. My plastic surgeon repaired my scalp in an ‘S’ shape to reduce the visible damage. He did a great job! You can still see the scars if I cut my hair too short, but thankfully my hair covers most of them.

Since the procedures, when I’m not working, I still enjoy being outside. I play golf with my Dad – I’m terrible but it’s a great time together – and I often hike with my wife or go mountain biking. We live in Texas and Utah throughout the year and I always try to wear long-sleeve shirts, sunscreen and hats now. I also see an oncologist every six months and dermatologist every three months. Both my wife and I have increased our awareness of the risks.

Reflecting on all of this, I remember when my mother was diagnosed with pancreatic cancer and doctors said there was really nothing they could do. They gave us a set period of time that we might have left with her, and that was that. I remember telling her, “You know, none of us are guaranteed a tomorrow.” I’m grateful I’m still here. Grateful that I DID get regular skin checks and found my melanoma in time.

Ultimately, you never know when it’s over. It’s an idea that crosses my mind a bit. For this reason, I’m all the more grateful that I still have more time.

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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!

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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!

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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.

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