I found my melanoma through self-checks, but not the way you’d think. For a long time, I would notice a brown spot on my lower right leg every time I shaved my legs. Unless I was actually focusing on my leg, I never noticed it and it didn’t bother me, so it wasn’t a big deal.
I never would have dreamt that the spot was Melanoma. But I knew it wasn’t totally normal, so I had made appointments to get it removed. But, because everything else in my life was more important, I kept canceling them. Sound familiar to anyone?
I finally stopped canceling in 2007. It was January and I had been having night sweats and felt very fatigued. It inspired me to finally keep my appointment and the mole was finally removed. I moved on and never gave it another thought – until a few days later.
I was at work rushing to a meeting when I realized I’d forgotten a file I needed at my desk. I ran back to my office where my phone was ringing. It was an unknown number. I decided to answer it in the off chance they were canceling my meeting. As luck would have it, it was my Doctor telling me to come into her office. I realized this was probably bad news, but I still found myself telling her that I couldn’t just drop everything and leave work. Reluctantly, she told me I had melanoma and she wasn’t sure what stage (or how bad) it was. She was sending me to a surgeon, a dermatologist and an oncologist. At this point, I really hoped that the meeting was canceled.
The surgeon I went to recommended a sentinel node biopsy to find out what stage my melanoma was. I had the biopsy on February 2nd, my 50th birthday. Ironically, a mole was found in one of my groin nodes, but it was completely benign. I was Stage One and I felt blessed. I made it through that scare and moved on to routine skin checks that I DIDN’T miss or reschedule.
Then, during a routine scan in 2011 my dermatologist found another suspicious spot. More melanoma. Same cell type. Stage One but I was told there were free floating cells – a nest of cells that were not condensed enough to be a big concern – and my immune system should take care of them. My dermatologist advised me to watch for any hard lumps behind my knee or in my groin and report them right away. I also had to get checked every three months.
One of the biggest things I took away was advice from my oncologist. They told me that our bodies let us know when something is wrong, much more than we realize. We just need to learn to pay attention. In my case, my night sweats were telling me something and I needed to pay attention.
My diagnosis has changed the way I view life. I do become somewhat afraid when I have a strange new symptom or spot, but I try not to let it consume me. I feel so very fortunate. With the use of sunscreen, shade, and sun-protective clothing I no longer hide from the sun. I am an extremely active person, so being able to get outside to run, walk, hike, paddleboard, golf or garden, is really important to me. I couldn’t imagine not being able to do those things or fearing for my health. Since my diagnosis, I always have SPF sunscreen and UPF clothing on. I even went to sunny Jamaica and added a great big sun hat to my wardrobe to stay safe.
My advice to you: Never put off taking care of yourself. Early detection saves lives, especially with melanoma. The earlier you find the cancer the better your result will be. So check your skin, go to the dermatologist, and get outside and be sun safe!
For as long as I can remember, my mom has checked my skin for new or changed spots, even into adulthood she still will look at my arms or neck and check for changes. She found my very first ‘spot’ in a dressing room while I was trying on new school clothes for my 3rd grade year. It was a dark black mole on my shoulder that had suddenly popped up overnight it seemed. The doctor removed it months later. Thankfully, it was only an atypical mole with no sign of cancer.
In 2003, when my mother mentioned that she did not like a mole I had on my jaw/neck area, I brushed it off with, “it’s fine, mom. No, mom, it hasn’t changed”. At the time, I was a 31-year-old mother with an 18-month-old toddler and an elementary school-aged son. My husband was in the military and we had just moved to a new town, so I did not have time to go to the doctor and investigate a mole that was probably nothing.
Then, I found the photograph that changed everything. I was looking through a box of old photos and came across an image of me laughing with my head cocked back to the side. It wasn’t a great photo but for some reason it caught my attention. I looked at the side of my face and neck. There was no mole. I flipped the photo over and looked for the date. It taken was about 2 years prior. It seemed strange that the mole had grown so large in such a short amount of time. Perhaps my mom was right to be concerned.
I made an appointment with my doctor who sent me to a dermatologist to have it removed. I remember when he called to give me the results. I thought it was odd that he was calling me. No one ever called with results. Everything was always fine. He used the word melanoma and began talking about a referral to a MOHS office for another surgery. I recall telling my parents and my husband that it was no big deal. I had my second surgery and clean margins, then I’d have skin checks every 3 months for a year, followed by every 6 months for a year. I could do that. No big deal. It’s fine. Everything is fine.
I really believed that. I really thought it was all fine. And then—I saw the Grey’s Anatomy episode about Izzy being diagnosed with melanoma and a metastasis. Wait…this can kill me? An older woman at my church had a spot on her foot that wasn’t healing. She had surgery, it was melanoma that had metastasized and she died six months later. My dad was diagnosed with melanoma a year after me and had to have a lymph node removed. I was learning that everything was definitely NOT fine. This was and is a big deal.
This realization absolutely changed things for me. Like my mother, my drive to protect my children from skin cancer became much more important. We already knew that sunscreen was an important part of going outside, but now it was vital. I also started being aware of what time of day we should avoid being outside. We lived near the beach, so I became an early morning or evening beachgoer and always used an umbrella. When watching my kids play sports, I found shade or made my own. As my children grew, they knew that a sunburn was something they had to avoid. I expected them to take sun safety seriously. After all, their grandpa and their mom both had melanoma.
Most recently I’ve learned a lot more about sun-protective clothing through Polka Dot Mama and Coolibar. Anything I can add to my family’s routine to help keep them safe really helps me feel like they’re safe out in the sun.
What I want everyone else to learn from my story is to take it seriously! Never think that skin cancer is ‘no big deal’. Be diligent about your skin and listen to your friends, family, or even a stranger in the coffee line if they think something doesn’t look right. In my case my mother was always looking out for me and she hounded my dad about the mole on his arm which ended up being melanoma. Her skin checks likely saved our lives.
My other advice is to take care of yourself. I was a busy mom and I made the excuse that I didn’t have time to take care of myself. This is SO common in mothers. But please remember that you are always worth the care you give yourself—especially when it comes to your health. Early detection really can save your life when it comes to melanoma. Since my initial diagnosis, I have met so many other melanoma survivors. The one survivor that has inspired me the most is my friend, Tracy Callahan, of the Polka Dot Mama Melanoma Foundation. Her story is so different from mine, yet we have so much in common. She has taught me more about melanoma than anyone—how to live a full life with the diagnosis and how to make a difference in the world because of it. Education and information are key components to helping people recognize the need for sun safety and how to take care of their skin. Tracy does an amazing job both educating and providing free skin screenings. She is a living embodiment of taking a challenging personal journey and using it to positively impact the lives of others.
Joanne P. McCallie is known by most for the 28 years she spent as a head woman’s college basketball coach. In that time, she celebrated 646 wins, 22 seasons with over 20 wins, 21 NCAA Tournament appearances, and eight conference championships. Most recently, she was the head coach at Duke University and helped the Blue Devils to a 330-107 overall record and earned ACC Coach of the Year in 2010, 2012 and 2013.
While her achievements as ‘Coach P’ will live on the walls of Universities for decades to come, her legacy will also be that of a Melanoma Warrior. She was first diagnosed with Melanoma in 2007 when a spot was removed from her forehead. With this diagnosis she began to further understand and respect the need for a sun-safe lifestyle and started advocating for this amongst her friends, family, colleagues, and her athletes.
Then in 2016 she had a second, more serious diagnosis which resulted in 26 surgical stitches on her back where doctors had removed malignant cells with melanoma. That same year more cells were removed from the right side of her neck. As her early scars had finally started to fade, new ones emerged.
Like many people who share their stories in the hopes of saving lives, Joanne crossed paths with numerous other warriors over the years. Including her athletes, some of whom had experienced skin cancer in their families, and even lost immediate family. As a coach, she had always understood the power and importance of a player’s ‘mental game’. But the mental health of patients, survivors, family was an entirely different mental battle.
She recently released her latest book “Secret Warrior: A Coach and Fighter On and Off the Court”. It’s a memoir of the mental health journey she’s taken through all parts of her life. From the realities and challenges of the sports world, to navigating her personal health and battles with cancer and bipolar disorder. Her recurring theme is this:
FAITH OVER FEAR
Her aim with this book is to reduce the stigma associated with impaired mental health and encourage those suffering from mental health issues to reach out for help. Mental health is a vital part of everyone’s success, but it’s not something that is easy to navigate and manage along. In the book, she offers real direction, experiences and personal stories to teach and reassure those working through the dynamics of their mental and physical health.
“The only way we can be our best selves is to prioritize the health and strength of our minds,” says Joanne.
Joanne’s faith and authenticity have led to many meaningful connections along her journey. One of the most impactful is her friendship with Tracy Callahan of Polka Dot Mama Melanoma Foundation. Together they created Melanoma Awareness Games with Duke University as a way to increase awareness and conduct as many free skin cancer screenings as possible. Protection and early detection make all the difference, and Coach P and Tracy Callahan continue to work together to promote sun-safe habits and get people to the dermatologist! Most recently she volunteered her time for a Coolibar Warrior Photoshoot. All proceeds went to the Polka Dot Mama Foundation!
As she moves away from her coaching career Joanne plans to devote more time to mental health awareness, through her book and directly. As someone who dedicates a lot of their energy to helping and supporting others, we’re grateful for all she does.
Part of me wasn’t surprised when the biopsy results came back positive. Of the three bumps I felt on my scalp and had checked, one was squamous cell carcinoma. When I got the diagnosis, I thought about all the things I loved to do outside in the sun. I loved to spend long weekends hiking in New York’s Hudson Valley. I went jogging and cycling multiple times a week, and I spent summers at the beach. My most memorable travels were always outdoor adventures, like hiking the Path of the Gods in Amalfi, Italy, the Grand Canyon, and the Torres del Paine in Patagonia. I even had an outdoor wedding!
I had always thought I was pretty good about applying sunblock (usually SPF 30) to protect my skin. What I realize now is that I have been completely ignoring my scalp. It makes me angry thinking about it. It all makes sense now. My hair has always been cut short—and it’s not particularly thick—which leaves my crown completely vulnerable to sun damage.
I’m not sure I consider myself to be a “Skin Cancer Warrior” per se, but I’ll admit to wanting to ‘attack’ this problem head-on. The good news in my diagnosis was that my cancer was considered ‘In situ’, meaning we caught it early enough. Regardless, I didn’t want to waste any time so I quickly scheduled my MOHS surgery with Dr. Vinelli in Morristown, NJ for June 9th, 2020 one month after the biopsy results.
The first thing I remember about that day was my conversation with the doctor. He told me that I had great skin for my age (50 at the time), but my scalp looked like “the skin of a 75-year-old”. Food for thought…
I sat and made small talk with the surgery staff as they clipped the hair off my crown. Then a large section of my scalp was shaved with a straight razor. I nervously joked about looking like a monk, and not leaving the house until my hair grew back. Then a sheath was draped over the sides of my head and face.
The surgery was done under local anesthetic, but I could hear snipping, scraping, and feel the dabbing of gauze and tugging of the skin while it was being sewn closed. I wondered what the site would look like when the surgery was done and thought about all the types of hats I would buy to cover the scar. The more tugging I felt, the tighter the skin on my head and face felt. It was a strange sensation…Was I inadvertently getting a facelift?
Then it was over. I was prescribed pain killers and an antibiotic cream and was told to remove the bandage the next morning. Additionally, I couldn’t exercise for at least two weeks and needed to avoid all strenuous activity. Hmm.
The next morning, my husband helped me remove the bandage and the look on his face said it all. We both had underestimated the amount of damage I had, and size of the incision needed to get it all.
Over the following months and with 2020 being what it was, I continued working from home while I healed. I took Zoom meetings and would carefully position the camera to be sure my coworkers couldn’t see the scar.
Eventually, I let my head tilt just enough and my boss saw the scar (and ‘monk cut’) and asked me what happened. As it turned out, he also had MOHS surgery on the bridge of his nose. We compared notes and lamented, saying things like, “If we could only go back and do things differently”.
We talked about how we were dealing with our diagnosis. He’d started staying out of the sun entirely while I was hiding under hats. He doesn’t go to the beach anymore and I’ve started sitting under umbrellas and wearing sun shirts. We each have different approaches to how we’re handling our brush with skin cancer. Both of us are fully aware that we’re even more susceptible to more damage. I think the most important thing is that we have both changed our habits and are in a position to help others.
As ‘skin cancer warriors’ we can tell people what happened. Not to scare them—or gross them out. But we get to share our stories with one another, and with everyone around us because this experience is entirely preventable. If we can teach people to protect their scalp, shield their faces, wear sunblock and sun-protective clothing, fewer and fewer people will experience this cancer. For that I’m grateful.
I was diagnosed with melanoma on my right arm at 26 years old. At the time, I was about to graduate as a Physician Assistant. I couldn’t believe it! As I was leaving my appointment, I pulled over the car and cried. I was about to start a career in medicine and I was getting married! How did I get skin cancer? I was terrified.
Luckily, my melanoma was superficial, Stage 1, so it could be surgically removed without significant damage or scaring. I knew it could have been worse. Much worse. Melanoma is the leading cause of cancer death in women ages 25-30, and the second leading cause of cancer death in women ages 30-35. I was 26, and about to be a licensed medical professional and I was a part of a cancer statistic.
The one thing that saved me was my knowledge of medicine. I knew enough to go in and get a skin check when I noticed something was off. Early detection makes a big difference in someone’s diagnosis. Finding out at 26 that I had cancer also helped me reevaluate my relationship with the sun. I was born and raised in sunny Florida and loved being outside and sunbathing by the pool when I was younger. I rarely used sunblock because I tanned easily and therefore assumed I wasn’t susceptible to skin cancer.
It took my diagnosis and surgery to finally change my sun habits. It happened immediately. I started investing in sun protective clothing. I kept accessories like hats, sunglasses and umbrellas with me so I’d never be without shade or protection. I started wearing an SPF of at least 30 on my face and lips daily. I stopped all tanning right away, no tanning beds or sunbathing. And I do my best to avoid sun exposure between 10am – 2pm.
After my diagnosis, I also started working as a Dermatology PA. It is my job to educate, evaluate, diagnose and treat patients with skin cancer. The most rewarding part of my job is being able to empathize and understand what my patients are going through. Getting a cancer diagnosis is hard. I’ve been there! But thanks to that diagnosis I’m able to help and support others.
For some it can seem daunting to kick off a sun-safe lifestyle. But, there are small but significant things you can seamlessly weave into your daily routine.
Keep a hat, umbrella and UPF 50+ elbow-length gloves in your car so you can grab extra protection when you need it.
Switch out your lotions and chapsticks to make sure they have an SPF of 30+
STOP tanning, whether it’s in a salon or at the beach. Just stop! Embrace your natural skin tone! Porcelain is pretty!
Get yourself some quality sun protective clothing for sunny days. It’s made to block UVA/UVB rays while keeping you cooler out in the sun.
In addition to helping avoid skin cancer, all of these steps will help prevent early aging in your skin. If you ask any medical provider in a dermatology clinic what their #1 secret is to beautiful, healthy skin, we would say sun protection!
At the age of 38, Tracy Callahan received a phone call that would change her life. It was her dermatologist calling with good news. She had melanoma, but they caught it early. Her obvious first question, ‘How is this good news?’. As a nurse, and a mother of two young boys, Tracy’s life as she knew it had changed.
Over the next three years, Tracy would receive that same phone call another three times. It never got easier, but she eventually came to realize that ‘catching it early’ was indeed good news. When caught early, the survival rate for melanoma is 92%*. She is reminded daily that she continues to be one of the lucky ones.
After Tracy received her third diagnosis, she decided to do something. Inspired by the name ‘Polka Dot Mama’, given to her by her two boys after numerous wide excision surgeries and biopsies, Tracy started a blog and began to network with survivors and skin cancer organizations across the country.
“The more educated I became, the more I wanted to educate others. Unlike so many other cancers, scientists have actually figured out the secret to avoiding most types of melanomas—protect yourself from the sun and avoid tanning beds. But as simple as it sounds, I discovered that people have so many misconceptions about melanoma.”
A few months later, Tracy’s simple blog quickly morphed into an idea for a non-profit organization that could fund research, raise awareness and promote the early detection of melanoma. In September of 2015, she officially founded the Polka Dot Mama Melanoma Foundation, a federally granted 501(C)(3) non-profit, and appointed a board of directors.
In its inaugural year, with the help of many incredible supporters and volunteers, the organization was able to fund-raise over $70,000. More than half of that money was donated specifically towards melanoma research. In 2018, the foundation increased that amount and raised over $500,000. It began focusing on education and awareness efforts with projects like the Shade Shuttle and free skin cancer screenings.
In 2019, Polka Dot Mama set a new Guinness Book of World Record for the most skin cancer screenings—32 dermatologists and over 150 volunteers worked together to screen 963 patients over the course of 7 hours! The team of volunteers reached people of all ages, races and socioeconomic status. They even had a dedicated team for Spanish speaking patients. In the last two years, Polka Dot Mama has helped screen over 1,500 patients and identified some form of skin cancer in about 15-20% of those patients. Although this statistic is scary, it has reinforced the need to keep providing as many free skin screenings as possible.
“You never want to identify melanoma in the patients you see; but knowing that our efforts are saving lives is what keeps me motivated”.
For those who have connected with the amazing team at the Polka Dot Mama Melanoma Foundation, they know that their community is at the heart of what they do. They take pride in being a grassroots organization with a national reach—including an appearance on the Today Show with Al Roker! The organization is passionate about coming together for one common goal—the prevention and detection of melanoma. And Tracy and her story are at the center of this. Everything Tracy has experienced helps her live each day with a grateful heart. She often says, “If I can make a difference in someone’s life by sharing my journey, then these scars will be given purpose”.
“We’re going to keep stepping up and doing our part to prevent skin cancer through early detection. When it comes to making a difference, it’s all about showing up.”
I went to the beach with my children for a summer holiday in 2018. When we returned home, I noticed a bump near my nose. My first thought was, “A pimple? At this age? I better ramp up my face care routine”. After a week of scrubbing, and trying other blemish remedies, the bump was still there. It was time to see a dermatologist.
The ensuing (my first ever) appointment with a dermatologist changed my life. She started out by asking some background questions.
Doctor: What’s your personal skin history?
Me: Fair skinned guy that grew up in Florida during the 80’s.
Doctor: What was your SPF use while growing up?
Me: Cocoa butter and tanning oil.
Doctor: What is your family skin history.
Me: Older brother with multiple skin cancers including melanoma.
Doctor: Arches her eyebrow and responds… Let’s take a look.
Thirty seconds later…
Doctor: You have skin cancer.
I remember thinking, “Wow, she gets right to it”. But then my years of military training kicked in and my thoughts switched to, “OK, how do we take care of this?” She walked me through my options:
Measure it and see if it grows
Biopsy it and find out what it is
I asked, “How is number 1 even an option?” Apparently, it’s not, but they’ve gotten feedback that people liked to have options for treatment, so they added number 1. I had the sense to choose to cut it off.
When the pathology report came back, I was stunned. I had malignant cutaneous squamous cell carcinoma. Years later, I’ve learned that there are much more severe and aggressive types of cancer that are more difficult to treat. But in that moment, I was terrified. I had cancer. There is a common theme in conversations I’ve had with others about their own cancer experiences: the moment when you learn you have cancer is as significant an emotional event as you will ever have.
So what now? I lived in the DC area, so I was sent to Walter Reed Medical Center to undergo MOHS surgery to remove the cancer. The fantastic team there got all of it. It was the most amazing news I think I’ve ever heard. And just like that, my cancer story shifted from that of a patient to a survivor.
My cancer story is a positive one. I know full well it could have been far worse, but I had paid attention to changes in my skin and I had access to health care. Those two things made all the difference. I began to wonder about those that aren’t aware of the importance of prevention and self-exams, and who don’t have access to health care. Having survived skin cancer because of early detection, I set out to find a way to do something about it.
The fact that really caught my attention was this…
Skin cancer is the most common form of cancer in America, but it is also the most treatable, with early detection.
Awesome…then why don’t we just detect it early for heaven’s sake? If the cure for skin cancer is to find it early, then why do we do vision checks every year but not skin checks? Why is a skin screening a C priority in peoples’ lives, instead of an A priority? I knew there had to be a way to get educated eyes looking at more people’s skin. I had a conversation with an artist friend that helped me switch the lights on and find an answer.
I had approached Pat McGee, a singer/songwriter/friend of more than 20 years, about playing a one-year cancer free show for me and some friends. Our initial conversation was pretty…real.
Me: What do you think Pat?
Pat: I think it sounds remarkably self-indulgent.
Me: What if we raised money at the show and gave it to a charity.
Pat: Getting better.
A friend in the medical philanthropy world jumped in with the idea of doing multiple concerts to raise money. LIGHT BULB! The three of us outlined a plan for an organization that would focus on skin cancer awareness AND would get people started by giving them much-needed free screenings. We Rock Cancer was born.
That one-year cancer free concert morphed into a We Rock Cancer launch event where half the attendees opted to be screened, and half of those that were screened had issues identified that required a dermatologist follow up or biopsy. We were amazed. We had found a way to enable early detection and provide people with the information they needed to take action in a timely manner. All while they were attending a rock concert. At the end of the event, one of our volunteer dermatologists observed:
“You guys have found a way to make skin cancer screenings cool!”
Since that night, a team of amazing volunteers has come together to grow our mission capability and our reach. We immediately identified a mission goal to conduct free screenings for those that work in sun-intense occupations—landscapers, construction workers, lifeguards, golf course workers, etc. We also started an outreach program to provide screenings focused on musicians and those in the music industry. The artists and techs that are the key to our public engagement often have extremely limited access to health care.
We also started a Youth Ambassador Program, so that we could help students and young adults be the messengers of sun safety in their school and athletic team environments. We provide them with information and checklists to identify opportunities to improve sun safety and to work with organization leaders to make improvements. Getting this information to young people at an age when they are first making decisions on their own regarding sun safety is essential to successfully prevent future skin cancers.
What’s next? We are gratified that our message is resonating with those that realize spending a few dollars on prevention and early detection is the key to avoiding the dangers and expenses that come with skin cancer. We’re going to keep stepping up and doing our part to prevent skin cancer through early detection. When it comes to making a difference, it’s all about showing up. We’re grateful that our efforts garnered the attention of Coolibar. We’re in this mission together and are so grateful that they continue to show up for non-profits like us. We look forward to sharing their support with our community!
David Aizer, a South Florida TV personality who has hosted TV shows for Nickelodeon, CBS, The CW, Fox Sports and more, has taken his stage III Melanoma and turned it into a tool to motivate and inspire others. His five-year journey through PET scans, brain MRI’s, CAT scans, a two-year clinical trial, numerous vials of blood and constant anxiety showed him that everyone has two options in life:
Be scared, angry and self-conscious about the challenges you’re facing.
Embrace life’s challenges and be grateful.
He recently gave a motivational TEDx Talk where he challenged everyone to look at their battle scars, whatever they may be, and realize that they’re part of what makes you, you. Every scar is an opportunity to educate, motivate and inspire others. It’s a great listen for anyone, no matter the diversity you’ve faced in your life.
David also wrote a memoir about his experience. His first-person account of how battling melanoma impacted him is full of honesty and heart. His ability to look back, reflect and find the humor in his experience is something we all need. Be ready to laugh and cry, then call your doctor.
As long as I could remember, I’d had a red spot on the white of my left eye. In my late teens, it started to grow, change and become raised and irritating. After years of following this up with my general practitioner, I finally got referred to an ophthalmologist when I was 20. He did a biopsy, which came back benign (non-cancerous). Six months later, three very dark spots that resembled a skin mole grew on the same eye. I had the second biopsy done on these new spots and was officially diagnosed with conjunctival ocular melanoma at the age of 21 in January 2015.
When I was told I had ocular melanoma, the room became blurry, an overwhelming sea of emotion and fear came over me and drowned out everything he said following my diagnosis. Cancer, on my eye?! Can that even happen? Isn’t cancer for old people? Is my life basically over now? It had barely begun!
I felt nauseous, trapped and confused. I didn’t feel or look sick so how could my life potentially be on the line? I wondered how long it would be until this illness caught up with me and actually made me look and feel unwell. However, a few weeks passed, and nothing really changed.
I had a lot of check-ups until they informed me that my treatment plan would be watching and waiting. No chemo, no radiation, nothing. I was so confused. Grateful, but confused. It almost felt anticlimactic, such a scary diagnosis and yet all I needed to do was see my oncologist every six weeks.
Six months went by during which I had more biopsies which all came back benign. We started to relax, my appointments became less frequent and life went back to normal. Then, what felt like it happened overnight, I noticed five new spots on the white of my eye and a small lump underneath my eyelid in August 2015. I went to my general practitioner first and he called my ophthalmic oncologist’s office right away. I was booked in to see him a few days later.
I could tell my oncologist felt unsettled at this appointment, he didn’t like what he was seeing and booked another biopsy. All the new spots he removed came back positive for malignant melanoma. This was when the tune changed. Things escalated quickly and I was being told I was going to have to lose my eye and eyelids, and that they’d close over the socket for good in order to save my life.
I still remember the pain and anger I felt in the moment. The very normal life I had imagined for myself—the typical, all-American family life with a husband, a house and a great career—was ripped away in that moment. I went home that night and thought about my options. Very quickly, I realised that I would do whatever it took to save my life. The only real choice I had was whether or not I’d let this break me. Would I hide away from the world or would I find a way to embrace it?
Well, within a few days, I decided I wanted to embrace this new look and make it my own. I went online and found beautiful, bright eye-patches that were going to be my fabulous new fashion accessory. It took me less than 24-hours to embrace my diagnosis and the opportunities it presented.
On October 9th, 2015 I had an exenteration—complete surgical removal of my eye and the contents of my eye socket. The first few days I was in a lot of pain. I couldn’t keep food down and I slept in 90-minute cycles. On the fifth day I had the dressing taken off and got to see my new look for the first time. To best describe how I felt, I’ve taken an excerpt from my book Eye Won: Powerfully Positive, Ridiculously Resilient…
“I almost bounded out of bed to see my new face. I expected to see someone foreign staring back at me, but I saw my bright familiar smile, my freckled cheeks, my button nose, my on-point eyebrows. The only difference, there was one eye staring back not two.”
I analyzed my face and saw a soft beauty in it and my smile brightened as I accepted the woman in the mirror as me. I silently told her that she was beautiful, strong, courageous and most importantly…still me. I tried out my new eye-patches and explored the world a little, embracing my new fashion accessory.
Life quickly went back to normal. Within a month, I was working, driving, studying and socializing. The only thing that had changed was I had a fun new accessory, my eye patch. Most importantly, it looked like we had eradicated the cancer! While the surgery had been challenging both physically and emotionally, I was grateful we’d done it and I could go back to living life as a twenty-something-year-old woman.
On September 9th, 2016 I remember sitting at home with my mum planning out how we were going to celebrate my first annual eye-versary when I had a seizure. I was raced to the hospital and told that the melanoma had spread to my brain and had become Stage IV Melanoma. My heart sank, I knew that everything I had faced up until this point had been child’s play in comparison to what I was about to face.
After having brain surgery to remove the cancer, I had to relearn how to walk and start an ipilimumab plus nivolumab (Ipi/Nivo) blend to prevent the development of more tumors. Looking back on that time, I know I felt terror. To get through it, I focused on what I was grateful for, the blessings I had and the things that made me smile.
More than anything else, the overwhelmingly beautiful feeling of gratitude is the first emotion that comes to mind when I think of my cancer journey.
Three and a half years after my brain surgery and I am thankfully still stable. I have such a beautiful appreciation for life and have accomplished so much. I completed my university degree during my treatment for Stage IV Melanoma. I hiked the Kokoda Trail in 2018, exactly two years after taking my first steps. I wrote and published my book Eye Won, which became a best seller in October 2019. And I got engaged to my incredible fiancé!
Cancer has taught me so much about myself and about the world. While it’s not something I would ever wish on anyone else, I would not be the woman I am today without it. For that I am grateful.
October 8th, 2006. I remember the day quite vividly. A week prior, I had been to my dermatologist to have a small bump on my head looked at. Not overly concerned since it didn’t have any of the typical signs of melanoma. My doctor scraped off enough for a biopsy and I went back to work. Then, on October 8th, I was in a conference room and my phone buzzed. It was my dermatologist’s office calling. I excused myself from the meeting and stepped into the hallway to take the call. It was my actual doctor and not the physician’s assistant. After an exchange of pleasantries, she paused, “I got the results of your biopsy. It’s cancerous. You have melanoma”. I was stunned by the gut punch. The rest of the day was a blur. At that moment, my cancer journey had officially begun.
Two months later in December, a surgical oncologist removed the tumor along with some adjacent lymph nodes on both sides of my neck. The tumor was deeper than expected and diagnosed as stage III melanoma, but it was removed. Margins were clear and I had no cancer activity in my lymph nodes. I felt fortunate and believed that I dodged a bullet.
In 2008, after two years of being NED (no evidence of disease), a follow-up routine chest X-ray showed shadowing and spots on my lungs. The melanoma had returned and had reached a stage IV diagnosis. Over the next 18 months, I had three lung surgeries to remove new tumor growths and wedge resection surgeries that took away 25% of my lungs. I tried to stay positive and committed to outrunning the cancer, literally. I took my exercise to a higher level, enhanced an already good diet, and made a conscious effort to mitigate the stress in my life.
After my third lung surgery, I completed 30 days of Interferon treatment (a form of chemo). It was challenging and I’d never felt worse in my life. Despite the steps I’d taken, by May of 2011, a CT scan revealed that I had tumors on both lungs, pancreas, liver and behind my heart. My stage IV diagnosis became more severe.
I met with my oncologist to map out a treatment plan. I wasn’t going down without a fight. Unfortunately, another surgery was not an option and my doctor didn’t know of any clinical trials. Basically, there was no plan. My doctor looked at me and said, “there is nothing more I can do for you”. Those words pierced the air. Emotions ran rampant, but reality had a way of setting in quickly. I had stage IV melanoma and there is no stage V.
After trying to fully comprehend the odds I was up against, I promised myself that I would find someone, somewhere to help. I wanted to give myself the absolute best chance for survival, so I sought out arguably the best place for cancer treatment – MD Anderson in Houston, TX. They are ranked No. 1 in cancer treatment year after year and are known for advanced cancer treatment options.
My wife and I flew from Atlanta to Houston and met with Dr. Patrick Hwu, a highly respected oncologist specializing in melanoma (today he is the Division Head of Cancer Medicine). When we met, it was clear that he had already reviewed my case as he said, “We’ve got a growing number of options in the melanoma treatment toolbox and I think we can help you. It’s never a good time to be diagnosed with melanoma, but if ever there was a time now is it”.
Amongst the options available, we talked a lot about a relatively new treatment category at the time called “immunotherapy” – training the cells of your immune system to seek out and destroy the cancer cells. After weeks and weeks of various testing, certain treatments were ruled out since my cells did not respond. Ultimately, the best option was a clinical immunotherapy trial that combined high dose IL-2 interleukin (a standard of care treatment option for melanoma at the time) with the Mage 3 vaccine. IL-2 by itself had a pretty low rate of response, but the clinical trial was to see if tying it to a vaccine would improve the response rate. The treatment had drawbacks – side effects, physical hardship, mental challenges, a long duration, and of course, the fact that the trial was new and nobody had completed it at that time.
To fulfill the inpatient treatment requirements, I would travel to MD Anderson in Houston for a week at a time, then return home for one to three weeks. I did this for about eight months. The biggest criterion of the trial protocol was that after each week of treatment I underwent a full CT and a brain MRI. If tumors were stable or shrunk, I continued with the trial. If they grew, then I was removed from the trial.
I started the first week of October 2011. The treatment was tough. Each time I was in intensive care hooked up to multiple machines monitoring every vital you can think of. I gained about 40 pounds of water weight each week and then would have to lose it before I was discharged. I experienced uncontrollable chills and muscular spasms. My heart rate would spike into the low 200’s after each dose of IL-2. My taste buds all but disappeared and I hardly ate. Somehow, in the haze of it all, my immune system responded, and my tumors began to slowly shrink. Week after week, month after month, my CT and MRI results showed progress and I kept going back to Houston for treatment.
I finally completed the inpatient portion of the trial over the eight-month period. Although extremely happy to finish, I wasn’t done. I continued head, neck, chest and pelvic CTs and brain MRIs immediately prior to each return trip to Houston. Every three months, then every six months to get lab work done, meet with my research nurse to answer a litany of questions about how I was doing physically and mentally, meet with Dr. Hwu and, of course, get my vaccine. On February 14th, 2014, in Houston for my checkup and scan results, I received the news I had been dreaming about. My scans and MRI showed no tumor activity. I was in remission.
After that landmark day, I continued getting CT scans, MRIs and the vaccines for another year. In July 2015, after 4+ years of countless hours in the ICU and flying back forth from Atlanta to Houston for the vaccine, I become the first patient to complete the IL-2 & MAGE 3 clinical trial.
It’s now May 2020 and I am 13+ years removed from my original melanoma diagnosis. I’ve had a combination of 16 major and minor surgeries. But most importantly…I’ve been cancer-free for six years.
My advice to you after all of this is to accept the facts and realize that no one is immune. More people are diagnosed with skin cancer each year in the U.S. than all other cancers combined.
Melanoma is the third most common cancer among men and women ages 20-39, and on age-related cancers, melanoma is the #1 most diagnosed cancer among 25 to 29-year old’s in the United States. So be smart! PLEASE wear sunscreen and sun protective clothing, check your entire body for changes in your skin and see your dermatologist regularly. Most importantly…enjoy life and take care of your body – it’s the only one you get!
For those still battling cancer – keep the faith, keep fighting and don’t ever give up. Above all, always believe that miracles are possible.