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This is Brave

This is Brave

This is Brave: The Mother Behind the Inspiration

By: Cheryl Adams

My son Graham was diagnosed at the age of 9 with pediatric melanoma. At the age of 9, you really do not know what the impact of a cancer diagnosis means. Now, at the age of 16, he knows. We all know. We have adjusted to handle the unexpected turbulence in life and stay brave so we can support Graham and be a strong voice in the melanoma community.

As any parent knows, it’s easy to become distracted by emotions, which generally leads to fear and can make any situation more difficult. We focus on what we can do, collaborate with others in similar situations hoping that we can lift each other up by sharing common stories.  There is a calming effect when you know you are not alone.

As the mother of the founding family of the Be Brave campaign, our hope was to tell our story and be part of a platform that would allow people affected by melanoma to form a circle of strength in which patients and caregivers could share stories that inspire us and together we would all Be Brave

Fear, is the opposite of Brave. I am quite certain Graham has fear. I have fear for him. His family has fear for him. He, however, is alive and is living in such a way that the world knows he is afraid, but he loves more than he fears.  My fear is that cancer will win and he will lose his bravery. His bravery is inspirational and for that I am grateful.

So, as we enter the third year of the This is Brave campaign, I challenge you Find Your Brave! Here are a few suggestions…

  • Speak Bravely. Tell your story. It will inspire someone. It will help someone
  • Ask Bravely.  Have the strength to be your own advocate. There is power in knowledge. Collaborate with others in the melanoma community and surround yourself with people who can direct you to the right resources, research, educators and advocates. They are out there. Be brave enough to ask.
  • Connect Bravely. Connect from your spirit and from your soul, with others who lift you up and give you extra strength.
  • Serve Bravely. If you are able, give back and support the greater good.

On a personal note to my sweet Graham; life is not fair. Melanoma did not allow you to have a normal childhood. I watch you suffer. I watch your siblings and your family worry. I watch you struggle. I watch you hurt. I also have the privilege and the honor to watch you Be Brave. A Brave that I never knew existed. A Brave that is beautiful, vulnerable and innocent.  My wish for you is that you will always Stay Brave.

To read more on the family that inspired This is Brave, watch the video below and visit HERE.

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This is Brave

This is Brave: “I’ll Beat This Again”

By: Julie Weber Smith

So many awesome things have happened since I told my story!

At the end of June 2019, I started working part-time at Warren Chiropractic Center. I work at the front desk and love seeing the improvements of the patients as they get their adjustments. The first day I worked there, I was driving into work and just started crying. I didn’t know if I would ever be working again! As much as we get upset with our jobs for so many reasons, I have thanked God for this job and the owners of this place for giving me a chance. Being employed is just another thing we can take for granted in our lives.

On October 28th, I went in to see my Oncologist to get results from a recent scan. They said a word I wasn’t sure I would ever hear…REMISSION!!! I will never forget the look that my husband and I gave each other. LOL! It was complete shock and happiness. I do need to continue taking target medicine Mekinist and Tafinlar that are designed to shrink and kill cancer cells until my next scan in April. But for now, I’m in remission!!! I get my skin checked every six months by my dermatologist and the most recent check showed that everything is fine. Nothing needed to be removed. Yay!

My energy and strength are getting better and I have been advocating for those fighting cancer. I am highly involved with the American Cancer Society Relay For Life in my community. I mentor and recruit teams as a team coach on our ELT Committee (Event Leadership Team). In the nine years I’ve been working with Relay for Life, I have raised thousands of dollars for cancer research and treatments, rides for patients, Hope Lodges (places to stay for cancer patients and their families while getting their treatments), and have been working on the 24/7 support call line. What I enjoy most is helping these people and their loved ones fight this cancer. Letting them know there is help, and that they are not alone makes such a difference in their battle.

Just recently, an American Cancer Society employee nominated me to be honored at a Coaches vs Cancer event at the University of Notre Dame Men’s basketball game. Nick Djojo, John Mooney and TJ Gibbs surprised me at my work with VIP tickets to the game, along with a few other gifts. I went to the game thinking there would be other cancer survivors walking out with me to the middle of the court and it was just me! They honored me for my work with ACS and in the community. I couldn’t believe it! I received a signed basketball from all of the players and courtside seats. It was so cool and very humbling.

Since working with Coolibar to tell my story, I’ve been able to help even more people going through the same fight as me. I have been sharing what this amazing company and their clothing is doing for everyone in protecting us from the sun, and that they are raising money to make sure that there are treatments and research for Melanoma. I’m grateful to be partnering with them.

I’ve been sharing my story with others since I was first diagnosed with Melanoma in 2013. I want to give some hope to as many people and their families as I can.

March 20, 2020: Taken from a live video feed to friends and family…

I’ve got some news to tell you. I’ve been having some pain on the right side where the cancer was, and I went in and told Dr. Ansari. I talked to Dr. Ansari. I had a CT Scan and I am no longer in remission. I found out yesterday that I have two masses. The mass on the right side is 10.1cm x 6cm. the one on the left is 4.8cm x 4.2cm. Both have fluid in them.

The plan right now is that on Tuesday I’ll go in for a biopsy and they will take the fluid out of the tumors and hopefully, that will relieve some of the pain that I’m having right now. Then on Thursday, I am going to Indianapolis to talk with a surgeon to see if they can operate. If operable, that will be awesome! I go for an MRI on April 2nd and then April 3rd I meet with Dr. Ansari again and we’ll discuss what needs to happen. The treatment we’ve been talking about is immunotherapy again, continuing the target medicine I’m on now, and possibly radiation. It could be all three, or a combination. We’ll see what happens. I’ll know more after April 3rd. Things can change between now and then as we all know. Things happen every day, every hour.

I just want to let you all know that I’m praying for every single one of you. With the coronavirus, we’re all in this together and we’re all effected one way or another. I’ve been praying for you and your families. That’s it.

I don’t feel as stressed as I did the very first time. I feel kind of at ease. I’m still kind of numb to everything. But it will be okay. It will be alright. I’ll beat this again. The cancer bug says it wants to attack me again and I’m telling it, “Not today! You messed with the wrong gal!” We’ll beat this again and do what we can. We’ll get this all taken care of and everything is going to be okay. They say third time is a charm and I’m praying it is.

You know, how I look at it is this…I’m going to be free from this one way or another. I’ve said it before, it’s going to be here on Earth or in the hereafter, and when you think about it either one is not a bad thing. I’m scared and I’m upset. I’m angry because I was doing so good. But I kinda knew. I was doing so good and thought, “I want to keep going! I’m doing great!” so I didn’t say anything. I didn’t want to be the one calling my doctor all the time because of this or that and have it turn out to be nothing. Now it’s worse.

In the same token, I can’t beat myself up for this either. I will just go with what is going on right now. And right now, I’m going to beat this and kick it! Even if I might have to kick a little harder this time.

Anyhow, I hope you all are doing well! I love you all! Keep safe with your family and friends and love on your family! Just let them know that they are loved. I love you guys.

To read Julie’s story from last year’s campaign, visit HERE.

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This is Brave

This is Brave: Describing Your Entire Life with One Word

By: Cassie Beisel

I have been through many iterations of my personal definition of the word change – my favorite – acknowledging and accepting the past and what you’ve been through, but knowing, deep down, that it is the only way to move forward. The word “change” has defined my life since 2011 and at first, change meant inconvenience, fear, inconsistence, anxiety and loosing who I was and wanted to be to cancer.

To quickly catch you up, in 2011, my life changed. I was diagnosed with advanced melanoma. I didn’t find my cancer by noticing a changing mole, the only sign was a palpable lymph node in my armpit. Later, I would find out that, of my 30-something lymph nodes removed, three tested positive for melanoma.

Since my diagnosis, I have had the above mentioned full lymph node dissection, completed a very long and grueling year of Interferon, was diagnosed with Acute Lymphoblastic Leukemia, had a life-saving bone marrow transplant. On top of that, I had squamous cell carcinoma “where the sun doesn’t shine” resulting in three separate Moh’s surgeries.

My work as Advocacy Officer with the Melanoma Research Foundation (MRF) has given me a new definition of the word change. Now change means to overcome, to advocate, to make better, to rally and to stand up for others. It means working every day to try to leave this world a little bit better than I found it. As the list of cancers and survivorship issues continue to grow, so do I and so does the meaning of change.

The ability to change is in all of us and not only in the traditional sense. I know change can be hard, inconveniencing and many times unwelcoming, but even the smallest amount of “change” can make a world of difference in the lives around us.

I ask you to embrace change, whether it’s smiling at someone who seems to be having a bad day, giving yourself permission to feel upset at what life dealt you or sharing your experience, journey, story—whatever you want to label it—to give a piece of hope to someone who needs it. Change can and will happen with every gesture we make, no matter how big or small.

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

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This is Brave

This is Brave: “I have survived 25 years of skin cancer.”

By: Judy Cloud

This year marks the 25th year that I have had skin cancer. While it’s not a joyous occasion, nor am I planning any sort of festivity to celebrate my ‘anniversary,’ I am thankful. Why, you ask? Because I have survived 25 years of skin cancer. I have endured everything it has thrown at me so far. I’ve made it through twice-yearly (or more) exams, through biopsies, the anxiety of waiting for biopsy results, surgeries, stitches and recoveries.

I wouldn’t be truthful if I said I’m not tired of skin cancer. There are far too many days that I am weary of having skin cancer. I’m weary of the constant skin checks I do. I’m weary of the just-like-clockwork dermatologist appointments. I’m weary of the anxiety of a suspicious area being found on my skin and knowing there’s a good chance it will need some sort of treatment.

But thanks to my far too many years of over-exposure to the sun and the use of tanning beds (and a small part to genetics), this is the hand I’ve been dealt. The damage I did to my skin when I was younger continues to show up years later.

Words of advice: if you love to spend hours lying in the sun without sun protection or going to tanning beds and think this won’t happen to you, you might want to think again.

A definition of endurance is: “the ability or strength to continue, especially despite fatigue, stress or other adverse conditions.” And that is exactly what we, as skin cancer survivors, do. We endure.

I have endured every treatment up to this point. I will soon have surgery for an infiltrating basal cell carcinoma on my face. It’s not a huge area on the outside, but I have no idea how large it is under my skin. I’ve had to find a new surgical specialist, as my previous doctor retired. This new-to-me doctor will perform a procedure I’ve never had before. And honestly…I’m worried. I’m nervous. The new doctor comes highly recommended. I don’t question his capability to perform the surgery, but he also doesn’t know how far the roots have spread under my skin. It could be a small surgical area, or it could turn out to be a large area. There’s a chance that this could be the surgery that ends up permanently changing my facial features.

As a writer and moderator for HealthUnion’s SkinCancer.net, I interact almost daily with numerous people who are battling skin cancer or who are supporting a family member in their battle. Heartbreakingly, too many people have lost their lives to skin cancer. We must continue to increase awareness of the dangers of over-exposure to the sun and tanning beds. We need to make sure people know how to practice good sun safety habits. We need to make sure people realize that their inaction toward sun safety can cause skin cancer.

If you’re still staying in the sun for hours without protective clothing or sunscreen or if you visit the tanning bed because you think you look better with a tan, please change your ways. You can choose to stay out of tanning beds. You can choose to practice good sun habits. You can set a good example for your friends and family on practicing sun safety. You are worth it, and so are they.

To see Judy’s story with us from last year’s campaign, visit HERE.

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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 Barack 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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