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This is Brave

This is Brave: Catching Up with Brian McKenna

2018 was wonderful, unpredictable, challenging and educational. I’ve had two more surgeries and three rounds of chemo pill treatments lasting 8 weeks each. In fact, as I am writing this, I am waiting for my next 8-week round of chemo pills to arrive in the mail. I strongly believe that I am going to get through this with flying colors because of my wonderful doctors/nurses and the three F’s – faith, family and friends. I can now see a light at the end of the tunnel. When I was diagnosed with malignant melanoma in 2014, instead of asking “why me,” I said, “try me.”

I realized that my mind was going to play an integral part of the battle. When cancer returned in 2017, I was ready for it. I was of the mindset that it had picked a fight with the wrong person. Cancer can control you from day one if you’re not careful. Like life, cancer is a full-contact sport. It can cause depression, fear, anger and hopelessness. Cancer also makes you take inventory of your life and appreciate the things that you have been taking for granted for many years.

My journey has taught me the following: enjoy every day, you will be much happier if you work hard at loving yourself and being happy, surround yourself with authentic people with kind hearts, pray that others find happiness including those that wronged you, smile more than you should, accept your shortcomings and realize you will never be perfect, embrace disappointment and grow from it, be challenged, forgive others, forgive yourself, get rid of that rearview mirror and look straight ahead, be grateful, don’t be afraid to fail, get comfortable with the uncomfortable, turn the other cheek, act upon the needs of others, your true worth is the effect you have on others, count your blessings, tell someone you love them before the bricks run out of road, realize that every relationship (good or bad) happened for a reason and that you are exactly where God wants you to be today.

All of this has become so much more apparent to me during my cancer journey. I’m so blessed to have the St. Louis community surrounding me with prayers, love and support. I am humbled and grateful.

Life gave Brian the sourest of lemons and he turned them into the sweetest of lemonades by starting a non-profit of his own that specializes in helping people that are in need and spreading good vibes through the world.

My goal every day is to make a difference in this world and be the best Brian McKenna that I can be! I fail on many days, but that’s just part of the journey. Please get regular skin checkups and never stop dreaming.

Your Vibe Attracts Your Tribe!

To see Brian’s story from last year’s campaign, visit HERE

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This is Brave

This is Brave: Bethany Shows Us Her True Strength

This last year for me has brought many changes and thankfully… Progress.

Health-wise, I’ve had a few little health scares since I wrote back in May 2018, but nothing serious or remotely life-threatening. Thank goodness! First, I had a staging scan to make sure all the immunotherapy (yervoy) infusions I get every three months are doing their job. It was during this scan that they found something on my liver. After a PET scan, the growth on my liver was determined to be nothing but a cyst and not metabolizing. The PET did reveal some reactivity in the lymph nodes on my neck. Which can mean bad news for me as well, but after a neck sonogram and a closer look it was determined that I just have Lymphedema (lymph node damage from radiation), which again was a huge relief.

Honestly, this is par for the course when you are in treatment for cancer. The closer you look the more things you find and if you’re lucky, it’s nothing. It’s a big mental weight, but worrying about what the results will be will not change the outcome. The only thing all the worry and anxiety does is ruin today.

In addition to tests, my face has changed yet again… but in the most positive way! I’ve had a few more plastic surgeries to fill in the dent on my forehead made by the removal of my melanoma. I’m grateful for this leap forward. I’ll be nearing the end of treatment soon and should be getting my last infusion this fall.

Emotionally, (because the emotional side of melanoma often feels bigger than the physical) I’ve had quite a year. In the midst of all of these tests and surgeries, my husband served me with a divorce. I was not surprised. Cancer is tough and brings out the best and worst in people. He was not capable of giving me the compassion I needed, and I was unable to overlook his shortcoming. I hope this shift gives us both the opportunity to find happiness.

My girls have been my inspiration and driving force. I have had to dig deep to start a new, independent life. In a few months, I sold our house, restarted my career (which I had left seven years ago), and moved into an apartment. Through all this change, the girls have bravely accepted each step-in stride. I am beyond proud of them.

Another one of my saving graces was advocacy. Thanks to my connections and my Melanoma Photo Diary on Facebook, many opportunities to continue raising awareness for melanoma and other skin cancers have opened up for me:

  1. The Shade Project invited me to speak at their annual Down and Derby fundraiser. SUCH an honor.
  2. Meredith’s Mission for Melanoma invited me to speak at their Gala to benefit the M.D. Anderson Cancer Center.
  3. AND Coolibar and the Melanoma Research Foundation reached back out for This is Brave!

Moving forward into 2019 and beyond, my girls and I plan to continue supporting advocacy and awareness as much as we can. While I’m wrapping up my treatment with my last two infusions and the reconstruction on my face by December, our drive to support protection, prevention and early detection will keep going. Despite the “hardships” that I may have gone through since diagnosis, I’m grateful for the strength I have and my ability to support others.

To catch up on Bethany’s battle and story from last year, visit HERE.

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Skin Diaries

A Finish Line She’ll Never Forget

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

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

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

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

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

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

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

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

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

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Together We Will

Together We Will… Educate Everyone and Anyone We Can Reach

Daniel Fine (Passed away October 10th, 1998 at the age of 26)

Written By: Stephen Fine Ph.D., Founder, President and Health Educator for the Melanoma Education Foundation

My oldest son Dan taught me about skin cancer. He’d never intended to give his family a hands-on, educational experience with the risks, treatments, and mortality rates of melanoma, but when he was 24 our education began.

In 1996, I noticed an ominously large mole on Dan’s lower back. It was brown, nearly half an inch wide, and thick. He had it removed and called me a week later from home, crying. He’d just learned that the mole was a high-risk melanoma and he would require further treatment. Not knowing what melanoma was, he’d searched the internet. As you can imagine, what he found was frightening.

If melanoma is not recognized and treated early it can advance and spread to other parts of the body where it becomes hard to treat and can be fatal.
The Skin Cancer Foundation

Dan always had a dark complexion and tanned easily. He was also relatively sun safe, he wore sunscreen and covered up with a T-shirt when rowing with the University of Miami crew team. When his dermatologist told him that sun exposure was likely a factor in his diagnosis, we were all surprised. Throughout high school and even college, no one had shared with him the risks of sun exposure to ALL skin types. Even though he was an athlete who was constantly on the water in college, it never came up.

The signs were there though. About five months before he was diagnosed the mole had started bleeding slightly. He blamed it on the rough fabric of his new office chair and moved on. To make self-checking more difficult, the mole was on his back so any changes it had gone through from childhood to when it started to bleed went unnoticed. What started as a small mole when he was a kid, had grown into something deadly without him noticing.

After his diagnosis in June 1996, Dan underwent surgery to remove a large area of skin surrounding the mole, the removal of 29 lymph nodes in his right armpit – two of which tested positive for melanoma, and a year of Interferon treatment. In April 1998 it was discovered that the melanoma had spread to his liver and was inoperable. From then on, the disease progressed steadily until October 10, 1998 when he passed away at home.

After Dan passed away, like many families who’ve lost loved ones to cancer, we wanted to make a difference. Research was an obvious choice as everyone wants to find a cure. But our families story felt rooted in our lack of awareness. It became apparent to us that Dan’s death (like most melanoma deaths) could have been prevented by early detection. None of us had been educated about melanoma until it was too late. If that was the key to saving the lives of others, then education was what we needed to provide. We launched the Melanoma Education Foundation in 1999.

We identified middle schools and high schools as the ideal venue to educate youth about melanoma. They were old enough to request dermatology visits from their parents, and young enough to have any melanomas curable. When we started reaching out to schools in our area we discovered that most wellness teachers knew as little about melanoma as we had. As a result, it wasn’t included in most health classes at all.

Children will be more inclined to practice sun protection if they understand why it’s important, namely to prevent skin cancer and premature aging.
– The Skin Cancer Foundation

Our free course—which includes a detailed one-period lesson plan, separate videos for high schools and middle schools, student handouts, and a teacher video—received a Gold Triangle award from the American Academy of Dermatology. The reach of the program quickly spread. By 2015 our SkinCheck® class had been adopted by over 1,700 schools in 49 states. We’ve also spread our reach by offering community outreach sessions at regional wellness events, public libraries, colleges, city employee sites, post offices, and service organizations.

We do all of this thanks to support from our donors and special events we host throughout the year. Their financial support helps us in our efforts to provide every teacher we can connect with the tools they need to be most effective. We continue to expand our database of almost 20,000 schools and serve the 1,700 who are actively engaged with us. Beyond outreach, most of our funds go to revising and updating our teaching materials and methods. Thanks to donor contributions, we’ve even been able to provide schools with facial sun damage analyzer machines. For a lot of students, especially skeptical teenagers, seeing is believing. With every dollar we earn, we’re able to reach more communities, teachers and students, and we’re constantly getting better at it.

In a 2017 survey of 334 teachers after teaching the course:

• 49 reported that students found early melanoma

• 113 reported that students found precancerous moles

• 145 students reported that family members found suspicious moles

• 95% reported that students said they’d use more sun protection

• 81% reported that students said they’d stop using tanning beds

– The Melanoma Education Foundation

Nearly 20 years since we offered our first course, we continue to be devoted to saving lives from melanoma by expanding high school and middle school educational services, serving as a resource for health educators on the subject of skin cancer education, and promoting greater public awareness.

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Skin Diaries

Fighting Fires and Melanoma

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

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

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

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

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

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

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

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

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

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

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

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

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Live Wisely What's Hot

2018 Coolibar Guide to Showing Someone You Care

“One in five Americans will develop skin cancer in the course of a lifetime.”
Skin Cancer Foundation

The need for sun protection is universal. Whether you live in a hot or cold climate or have fair or dark skin, we all need to be mindful of our exposure to UV rays. Coolibar recommends gifting UPF 50+ protection to the people you love most as a way to help them live a sun-safe lifestyle while enjoying the outdoor adventures they love most.

For tiny cuties who already love the water:

“Because babies have thinner skin, sunscreen is not recommended for infants under 6 months of age.”
Skin Cancer Foundation

For the “big kiddos” you love to the sun and back:

“Even one blistering sunburn during childhood or adolescence can nearly double a person’s chance of developing melanoma.”
Skin Cancer Foundation

For the sun protection-resistant men in your life:

“By age 50 men are more likely than women to develop melanoma. This number jumps by age 65 making men two times more likely as women of the same age to get melanoma.”
American Academy of Dermatology

For global-trotting sun seekers:

Travel destinations like Hawaii are starting to ban sunscreens containing chemicals harmful to coral reefs.

For adventures in and on the water:

“Many surfaces reflect UV radiation and add to the overall UV levels you experience. Water reflects 10%; sea foam reflects 25% and sand reflects 15% UV rays.”
– World Health Organization

For the garden party goddess that craves a touch of glamour:

“About 90% of visible skin changes such as aging, wrinkles, brown spots or leathery skin are caused by the sun’s ultraviolet rays and can be minimized by sun protective clothing.”
Skin Cancer Foundation

For someone who needs a little extra support:

“Melanoma is not just a skin cancer. It can develop anywhere on the body – eyes, scalp, nails, feet, mouth, etc.”
Melanoma Research Foundation

For EVERYONE spending time in the sun

“For every inch of brim you wear, you reduce your lifetime risk of skin cancer by 10%. So a 6” brim means 60% risk reduction.”
– Skin Cancer Foundation

 

2018 Holiday Gift Guide

 

 

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Experts Say

More Men are Diagnosed with and Die from Skin Cancer than Women

Dr. Arthur Ide is the owner of Dermatology, P.A. in Minneapolis, Minn. He is board certified by the American Board of Dermatology and is an Adjunct Associate Professor of Dermatology at the University of Minnesota. He currently has four children and lives in Minneapolis.

 

More men than women are diagnosed with AND die from skin cancer. As dermatologists, we ask ourselves why. Is this a societal issue or does it have to do with biology? What is going on here? It’s a little bit of everything, to be honest. Men are the underdogs when it comes to health and wellness.

Our best approach is to look at five key issues behind this statistic and find solutions.

 

1: Men contract skin cancer differently than women

In general, men and women have different relationships with the sun. Many women seek out UV rays in an aesthetic way. Roughly 8,000,000 women tan indoors when they’re younger compared to 2,000,000 men. Men are more likely to contract skin cancer following a lifetime of sun exposure while engaging in outdoor activities like swimming, fishing or golfing.

SOLUTION: Teach men young and old to care for their skin. If your internal response to that suggestion was “yeah, but how,” I get it. Teaching men to adopt healthy skin habits can be tough. We almost always recommend skin protective clothing instead of sunscreens or lotions. Arm them with the tools that will protect them even if they forget to protect themselves.

2: Men are diagnosed much later in life than women

In part because of the difference in sun habits between men and women, skin cancer diagnoses are more common for women under the age of 49, and for men over the age of 49. Because skin cancer manifests itself at a younger age in women, they will often catch it before it spreads beyond one or two basal cells. Men who are diagnosed later in life will often have accrued multiple basal cells.

SOLUTION: Don’t let men wait! Getting your skin checked by a dermatologist should become part of everyone’s routine. Parents need to teach young people to care for their bodies inside and out. Adolescents learning to check their skin today stand a much better chance of detecting skin cancer when it counts.

3: When women see something, they say something. Men, not so much

Generally, women are champions when it comes to early detection. When they notice a change in their body, they take care of it. Often when a man comes to see me they’ve been ignoring the warning signs so long they’re a bit of a train wreck. We’ll find multiple cancers. The famous line we get from men is, “It didn’t bother me”, which is often followed by, “my wife made me come”. Well sure. Skin cancer doesn’t bother you until it’s killing you. This is a key reason why men’s mortality rates are higher than women.

SOLUTION: We need more watchdogs and evangelists. One of the troubles with detecting skin cancer in men is that it’s more common on their backs. Everyone needs to enlist the help of family doctors, partners and family to detect abnormalities in men.

4: Changing habits is easier for some (women) than it is for others (men)

When a woman comes to our office and discovers she’s at risk or has basal cells, she’ll act. Men are more resistant to change. I had one patient who discovered he had four basal cells on his back on his first visit. Despite this, I still can’t get him to wear even a standard cotton shirt outside 100% of the time.

SOLUTION: I’ve found that with men it’s helpful to show, not tell them what they need. Seeing is believing. The easiest solution is to arm them with clothing that will protect them even when they forget to. Our biggest hurdle with men AND women is to shift their dependence on sunscreen to sun protective clothing. What a lot of people don’t understand is that they need a protective shield that never fades or wears away. At the very minimum, we do our best to get women to cover their head, neck and shoulders and to get men to ALWAYS have a hat on while outdoors. The upper extremities are beacons for sunlight. Sunscreen alone will NOT protect them from harmful UV rays. They must cover up.

5: Educational information isn’t reaching men and women equally  

Information about skin cancer prevention and detection often falls under the heading of “beauty” or “wellness”. These aren’t categories frequently sought out by men. If I could get a sports reporter to highlight sun protection use in the stands at every game, we’d be in much better shape.  We need to get better at spreading the message to everyone that needs it.

SOLUTION: Support organizations like the Melanoma Research Foundation and The Skin Cancer Foundation. Their key purpose is to educate EVERYONE about the importance of skin cancer prevention and detection. Even smaller, local organizations make a big difference in terms of educating men and women about the threat of skin cancer and how to prevent it.

You can start by giving to one of these organizations for #GivingTuesday:

Support Awareness and Education:

Skin Cancer Foundation

Melanoma Action Coalition

 

Support Research:

Melanoma Research Alliance

Vitiligo Research Foundation

 

Support Awareness, Education and Research:

American Academy of Dermatology Association

American Cancer Society

Lupus Foundation of America

Melanoma Research Foundation

Polka Dot Mama Melanoma Foundation

 

Support Youth:

American Academy of Pediatrics

Children’s Melanoma Prevention Foundation

Richard David Kann Foundation

 

External Sources:

American Academy of Dermatology Association “Melanoma Strikes Men Harder”

The Skin Cancer Foundation (August 2, 2016) “Men Fall Short in Skin Cancer Knowledge and Prevention”

The Skin Cancer Foundation (May 30, 2018) “Men on the Hook”

HealthDay News (November 5, 2018) “World Melanoma Deaths Up Among Men, But Not Women”

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Skin Diaries

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

XO Nicole

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Together We Will

Together We Will… Fight for Our Family and Others

As part of our “Together We Will” series, Coolibar had the opportunity to talk to Steven Silverstein about his journey from a shocking stage-4 diagnosis to today. Here is Steven Silverstein’s remarkable story in his own words.

“I always went to a derm. My sister is a derm. Even with that, I still had stage 4 melanoma that was misdiagnosed by my dermatologist and a plastic surgeon,” said Steven Silverstein as the conversation started. “I had something on my face that had been removed and it didn’t go to a lab, labs weren’t standard back then,” he said. “Sometime later, I had swelling on my neck and got a needle biopsy.” By then the cancer was in his liver and the doctors told him not to bother having surgery. “Why go thru that?” they said. They wrote him off. But they didn’t really know Steven Silverstein.

“Here’s the thing, my daughters were 13 and 16 when I was diagnosed. I wasn’t going to give up without a fight. I wanted to get as much of the tumor burden out, tumor out, so I decided to have the neck dissection.” Steven told us that there were no clinical trials at that time, so after his surgery, he did a “chemo cocktail”, which did not work, then direct chemoembolization to his liver.

“What I wanted was a systemic approach, a protocol,” said Steven, sounding frustrated and impatient. After his chemo, he started researching options. Interleukin-2 (IL2) was available but its reputation was brutal. “I was told it had a 6% survival rate for someone in my situation,” Steven pauses, the memory hangs in the air. The regimen was brutal. “I would go to the hospital for a week, get IL2 every 8 hours for seven days, then go recover for three weeks before starting another cycle. My hospital time was spent in the intensive care unit for 4 cycles, over 4 months, and I had lots of challenging side effects.”

With limited options left, Steven was forced to sell his family business to protect his family and other interests. After all that, Steven asked his doctors if there was anything proactive he could do. He did GM-CSF, a drug used to fast-track the recovery of white blood cells following chemotherapy, for two years. But, once again, there was no protocol. The use of clinical protocols allows doctors to offer appropriate treatments and care. In typical Steven fashion, he turned a dead-end into a turning point. “I was curious about how drugs get to the doctor’s practice. Why were there medications that sounded so promising, yet weren’t tested and approved for melanoma?” He had found his mission.

Today, Steven Silverstein is a 15-year survivor of stage 4 melanoma. He’s also the Melanoma Research Foundation’s Chairman of the Board and his story underscores the MRF ’s mission to “transform melanoma from one of the deadliest cancers to one of the most treatable through research, education and advocacy.”

Steven is determined to see that the MRF funds grants with leading scientists. After all, “research” is their middle name. He has gotten to know many the doctors and scientists working to treat and cure melanoma. He is dedicated to making connections for people, to get them the kind of care he had to unrelentingly fight for himself.

Steven tells us he got involved with MRF because they’re patient-centric and grassroots. “It resonated. I like the buddy program, meeting people and working with them 1-1. The local events keep it real and it’s very gratifying to help other people.” In fact, MRF has a community fund-raising toolkit for smaller markets to do events, inspired by a personal story. “I spoke with a woman in a remote area who had lost her son. She apologized for only being able to raise a small amount. She does a pizza party once a year, educating 20 or so people about melanoma prevention. Well, I couldn’t accept her apology. Because, within a few years, she had educated her entire community about sun safety and melanoma! So, the money was really secondary!” He continues, “THIS is MRF. It’s not just about the fund-raising, it’s about education, dollars raised AND people touched.”

In addition to the MRF’s science grants, education materials and symposiums, the organization promotes advocacy. In 2009, MRF started a program through the Department of Defense, including 4-5 cancer groups sharing 4-million dollars. Today, through their continued advocacy efforts and the help of the great team at the Melanoma Research Alliance, that number has grown to $80 million to be shared between 17 cancer groups. Steven proudly notes, “Out of $250M of research funding to 2017, melanoma got $50M. MRF also funds $1-1.5M per year themselves.”

Steven Silverstein, MRF Chairman of the Board, is a volunteer. He tells us that 60% of their board members are stage-4 survivors. They are patients from various trials over time. They are all volunteers. They are all warriors.

Steven started this journey when his daughters were teenagers. He has now lived to attend both of his girl’s weddings and hold his first grandchild.

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Together We Will

Together We Will… Cure Ocular Melanoma

We often think of melanoma as a cancer of the skin, but ocular melanoma, a lesser known form of melanoma, can develop in the eye. There are only a small number of physicians in the US who specialize in ophthalmic oncology. One of those specialists is Dr. David Abramson, Chief of Ophthalmic Oncology Service, at Memorial Sloan Kettering Cancer Center (MSK) and Professor of Ophthalmology at Weill-Cornell Medical Center. Dr. Abramson will be honored with the CURE OM Vision of Hope Award at the Melanoma Research Foundation’s 17th Annual Wings of Hope for Melanoma gala in New York City this October.

Founded in 2011, CURE OM (the Community United for Research and Education of Ocular Melanoma) is the MRF’s initiative to increase awareness, education, treatment and research funding for ocular melanoma, while improving the lives of people affected by this disease.

 

As Chief of Ophthalmic Oncology Service, Dr. Abramson utilizes the Center’s close associations with specialists in pediatrics, radiation oncology, and medicine, to offer coordinated, state-of-the-art care with access to novel therapies and clinical trials not available anywhere else in the country. We had the honor of speaking with Dr. Abramson about his specialized path:

COOLIBAR: How did you find your way into the specialization of ophthalmic oncology?

ABRAMSON: I was fortunate to train in Ophthalmology at Columbia Presbyterian in New York which-at the time-had the world leaders in ophthalmic oncology (Algernon Reese MD and Robert Ellsworth, MD). I love the field of Ophthalmology but wanted to do something that made use of my scientific background, surgical training (I have performed more than 7,500 surgeries), research skills (I have published more than 700 papers), desire to help women and men, adults and children. I did a fellowship in ophthalmic oncology and did additional specialized training in pathology at the Armed Forces Institute of Pathology and Radiation Oncology. I am the only physician at MSK tenured in Surgery, Pediatrics and Radiation Oncology.

C: Have you seen a significant increase in the number of melanoma in the eye diagnosis year after year?

A: No but these cases are handled by only a small number of physicians in the US so we are quite busy seeing patients at MSK.

C: How does the MRF help you do the work you do?

A: Research doesn’t just happen any more than a car drives without gas. Money and awareness are the fuel for research and without that our car doesn’t go. MRF does both.

C: What inspires you to continue to pursue your work each day.

A: I am inspired by my failures, not my success. I try to understand why we failed, what we can do to be more successful and commit myself to those patients who have lost their battle with cancer. I will stop when I cure 100% of patients with no side effects.

C: Is there anything else you would like to share about the work you do?

A: I am the quarterback of a team and while it helps for me to call good plays our success is a result of that team. My nurses, researchers, colleagues, technicians and even the people who maintain our instruments are critical to success. Without the commitment of a special place like MSK and the support of organizations like the MRF, I would be throwing passes to an empty field.

 

Ocular Melanoma is the most common eye cancer in adults and the second most common location for melanoma. Approximately 2,000 Americans are diagnosed with ocular melanoma each year, and about half of these cases spread to other parts of the body, most commonly to the liver. When this occurs, it is most often fatal. There are treatments to help alleviate symptoms and extend life, but there is no known cure for ocular melanoma.

Ocular melanomas develop between ages 55 and 65 most often and usually are detected on an ophthalmic examination without symptoms. They are a disease of people whose families emigrated from Europe and rare in Asia and Africa. The more north in Europe your family is from the higher the incidence of ocular melanoma. Unlike cutaneous melanomas, sunlight plays no role in their development. Ocular melanoma should be treated by an ophthalmologist who specializes in treating eye cancers as most Ophthalmologists have limited experience in managing these tumors. Dr. Abramson combined his love of Ophthalmology with his scientific background, surgical training, research skills and desire to help people of all ages to become one of the few specialists qualified to treat ocular melanoma. He has trained with pioneers and world leaders in ophthalmic oncology, including Algernon Reese, MD and Robert Ellsworth, MD.

The CURE OM Vision of Hope Award will be formally presented to Dr. Abramson at the Wings of Hope Gala in New York this October. If you would like to attend the Wings of Hope Gala or learn more ways to support the Melanoma Research Foundation, visit: www.melanoma.org/get-involved/signature-events/wings-of-hope-galas.

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