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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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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: 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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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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This is Brave

This is Brave: Instead of Silence, Norah Chose to Be Vulnerable

We’ve all got the t-shirts that say “Be Brave”, right? Well, I’ve been listening a lot lately to Brene Brown, who says in order to be brave, we must be vulnerable.

“There is no courage without being all in. If you can do something and not feel vulnerable, it’s probably not that brave.”

Brene Brown nails it! One of the most vulnerable things we can do is talk about an illness and our health. So here I go:

In late 2016, my dermatologist informed me I had been diagnosed with a very early stage of melanoma. Early detection and surgery saved my life. At first, I thought I would keep my diagnosis silent. Why did I need to share something that made me feel and appear vulnerable?

With the help of friends, I decided to go public with my diagnosis. And what came next shocked me. There was not only an outpouring of support, but also many people thanked me. “I have not gotten a skin check in years, but after I read your story, I scheduled an appointment,” said one male executive at CBS. Another middle-aged gentleman who works at CBS showed up in our CBS This Morning studio with a big bandage on his forward and said, “Hey, Norah. Because of you, I got checked and they removed a skin cancer.”

And for my part, since my diagnosis and surgery, I’ve continued to see my dermatologist every 4-5 months for a check-up and have been much more mindful about my exposure to the sun.

By sharing our experiences, we are helping to inform one another and protect one another. This is part of our common humanity. So thank you for helping me learn that my vulnerability makes me brave, and let’s pray, will help save lives.

Want to read more? Catch up on Norah’s battle and story she shared with us from last year

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