This is Brave is in its fourth year! In four years, we’ve raised over $100,000 for the Melanoma Research Foundation, and we’ve reached millions of people with messages about protection and prevention through social media. The secret of this campaign’s success is our warriors.
When Coolibar first started designing UPF 50+ clothing, we were inspired by family and friends who were battling skin cancer. We wanted to do more to help them stay sun-safe and get back outside. Since then, we’ve connected with hundreds of warriors living with all kinds of sun-related issues: melanoma, lupus, albinism, XP and more. We’ve met firefighters, kids with pediatric melanoma, Olympians, professional golfers, and women of all ages sharing their skin cancer stories in an effort to keep their loved ones sun safe.
These warriors are…STRONG, BRAVE, AWARE, JOY, HOPE, THANKFUL, RESILIENT, GRATEFUL
…and we are truly HUMBLE.
Helping warriors share their story is an honor. It can take a lot of courage to put your experience ‘out there’, and we’re humbled by every story we get to help share.
We’re remembering two extremely courageous warriors that we lost in 2020–Susanne Milne and Eric Martin. Both fought incredible battles with Stage IV Melanoma, and they did it with hope, resilience and strength that most people will never get to see. Throughout their numerous treatments and surgeries, each did more than their part to support the melanoma community and we will be forever grateful.
As remarkable as this may sound, this is the first time we’ve lost warriors who have shared their stories with us. It’s helped us acknowledge just how incredible each of these stories are. Even though we’ve said goodbye to Susanne and Eric, we can still help them advocate and save lives. With their stories, we can continue the work of our friends indefinitely. It’s an incredible feeling.
Whether you’ve lost someone to skin cancer, or for any other reason, we’d like to celebrate each of them with you. We invite you to share what makes you smile at the memory of them in the comment section below, or through our Facebook or Instagram pages. The best way to honor the people that are gone is to keep telling their stories. We’re here for each other and we’re in this together. Let’s BE BRAVE. <3
Well, it’s been two years since my last Coolibar blog. So much has happened since then that I really don’t know where to begin. To refresh, my cancer journey started in May 2014. An ex-girlfriend found a suspicious spot under my right armpit and told me that I needed to get it checked. As many men typically do, I told her that I would take care of it in the fall. She said that was not an option and made an appointment for the next week. As it turns out, it was malignant melanoma. I will always be grateful to her for possibly saving my life. Since then I have been very vigilant about getting regular check-ups.
Well, cancer came back in February 2017. I had five cancer surgeries in four weeks on my face. The fifth surgery—which was supposed to take four hours—was extremely rare and difficult and ended up taking nine hours! It required 300+ stitches, took a chunk out my right ear, left me with partial face palsy and a right eyelid that couldn’t blink. The doctors had to take a few tendons out of my right leg and rewire the nerves in my face. After radiation and physical/occupational therapy, the hope was that one day the nerves would re-trigger, the face palsy would go away, and I would be able to blink again. Thanks to the miracle workers—doctors, nurses, therapists and staff—at Barnes/Wash University/Siteman I’m doing about as well as can be under the circumstances.
After that surgery, I went through seven rounds of chemo pills and one week of putting chemo ‘hell ointment’ all over my body in 2019 and 2020. Though it has been rough, I have persevered because of consistent check-ups and my three most prized possessions in life:
My faith. My families. My friends.
What else do I need? I’m so blessed to have the best family ever. They are my true currency. I have the greatest friends and a community that cares so much that they threw several fundraisers and a parade with 500 cars to help me pay my medical bills and other bills while I couldn’t work. I could never express enough appreciation and gratitude for the love, support, prayers and strength this community has shown me. They inspired me to get out of bed on mornings when I had nothing physically or emotionally in the tank. I didn’t want let them down.
I initially shared my story publicly with the hope of inspiring others to keep on keeping on. Throughout my life, I have witnessed family and friends battling like warriors when facing cancer, depression, other illnesses or the loss of loved ones. They inspired me and gave me the perfect blueprint on how to not let adversity bully me. You lose 100% of the time when you don’t battle.
I have had many people ask me how I remained so tough throughout all of this. As an Irishman, I have been in many scraps throughout my life but I don’t think that’s what they were referring to. I would always tell them that mental toughness is a lifestyle. You don’t need to talk or act tough. That’s actually a clear sign of insecurity. Authentic toughness is earned through your confidence, kindness, positivity and humbleness. It’s the ability to stay focused in the moment. Trust me, when getting ready for a cancer surgery or driving to another radiation appointment, or knowing you have another round of chemo ahead of you, mental toughness is so much more important than physical toughness. I’ve always been a believer in the motto “strength of body, power of mind”. Every scar tells a story.
Thank you Coolibar for the awesome UPF 50+ gear that allows me to protect myself outdoors while looking fashionable. I look forward to the next part of my journey and what lies ahead. I thank God every night for two things:
1. Making my reality bigger than all of my dreams.
Hi, it’s Amy Nichole here once again. The last time I shared my story with you was in June 2019. That was right after I had found out that my melanoma had returned not once, but twice! Since 2019, I’ve been seeing my oncologist every 3-6 months in addition to seeing my dermatologist every 3 months. Safe to say, I’ve had my share of appointments and tests since I last shared with you.
Back in October 2019, my oncologist ran all kinds of tests including a full body PET Scan. With the melanoma coming back like it had, we needed to get a better picture of what we were facing. I also have family history of Breast, Melanoma, Cervical and Lung cancers so we tested for genetic cancer markers. I tested positive for two cancer markers which increases my risk for Breast, Ovarian, and Pancreatic Cancers. Following these tests, we knew what we might be up against, so I started getting proactive screenings for other cancers. More tests!
To add to the numerous battle wounds and scars, I already caried on my right arm and back, between Nov-Dec 2019 my dermatologist found more than 10 atypical spots, all of them ranging from questionable to severe and needing to be removed and tested. One of those spots had been considered ‘moderate’ in June 2018 and was left alone. It ended up growing back as Melanoma.
Since 2019, my outlook on life has changed significantly. I’ve become an advocate for skin cancer and do my best to educate others about protecting themselves from the sun. I’ve even started fundraising! In May 2019, I was able to raise $900 for skin cancer research, education and prevention. Between May and June 2020, I raised $1,000 with shirts I had designed to help increase awareness. Coolibar even helped provide the long-sleeved shirts for it!
I’ve also changed my habits. Since my initial diagnosis, I’ve gone from being carefree in tank tops and no hat, to wearing only UPF 50+ clothing. Coolibar has just about taken over my closet. I always wear sunscreen and have a hat and my Coolibar gloves on when I’m outside, no matter the weather. With the diagnosis and scares I have had, I know how important it is to keep yourself protected. I have even changed my diet, per my oncologist’s request, as a preventative measure. I’m pleased to say that all my test results were clear throughout 2020.
The downside of the past year was that my best friend Michelle, lost her battle with Pancreatic Cancer. She was initially diagnosed in May 2019 and passed away in on October 25th, 2020. She was with me in January of 2020 when I got the news that I was cancer-free for the first time since my first diagnosis. She never missed my appointments because she knew how much her support helped me through. She touched me deeply and I am forever changed. I’m so grateful to have been by her side in the last few days of her life. Seeing her go was one of the hardest things I’ve ever done, but I’m glad I was by her side just like she had been for me. Rest in Peace Michelle! I love you forever and always my soul sister!
I’ve learned through all of this that beautiful things can come out of the darkest places. About a year before she passed in November 2019 Michelle received the news she was momentarily cancer free. We celebrated by doing a warrior portrait session. After she passed, her family looked to those photos for comfort as they celebrated her strength and resilience. They will forever be cherished by her family. She was a true warrior and will live on in the hearts of many people. Michelle inspired me to donate a warrior portrait session every year in her memory. It’s something I can keep giving to others to help them through when they need it. For that, I’m grateful.
Considering everything that I’ve been through, and continue to go through, I get asked for advice often. It tell people that it’s all about having a good plan with your team of doctors. Having everyone on the same page is so important. Being aware of your body is also extremely important. Ultimately, you are more likely to catch a sudden change, not your care givers. So, if you see something, say something! NEVER miss your skin checks and don’t be afraid to go in and ask your doctor to double-check something if it isn’t looking right. It is better to be safe than sorry as Melanoma or any form of cancer can come on suddenly and change quickly.
Most importantly, scars aren’t scary or anything we should hide. They’re a part of us. They help tell the story of how we’ve survived our battles. They’re what remind us of the pain we went through. Every new scar makes us stronger than the scar before it. They’re tough and courageous. They’re our war stories and our badges of strength. Be proud of your scars as some may not even be visible to the naked eye but are deep down inside of you. Don’t be ashamed and don’t be shy. Show your courage and strength along with your scars. Inspire someone. You may change someone’s life in more ways than one with your story as each battle is something so personal to learn from.
Melanoma, what an ugly word. The first time I heard it, I was six. I could barely say it. I wish the story ended there, but it was only the beginning. Graham, my brother, was diagnosed in 2013 with stage III melanoma on his left arm. When I was growing up I knew Graham was different because he had melanoma, but I never knew that he could die.
Usually when bad things happen in families, emotions take over. The emotion we all wanted to have was bravery but that is hard to do when you’re scared. But we were scared together, and that gave us strength.
I watched Graham go through lots of surgeries, and painful tests, and it was hard to think about what might happen if his melanoma came back. We had to be brave together. As I got older, I learned more about melanoma, and that this type of skin cancer can be deadly. Graham’s cancer did not come from a bad sunburn or being out in the sun too much, his was genetic, but most are not like Graham’s.
Once, in 5th grade, I had to write a story about my hero, I picked Graham. I did a quick google search about pediatric melanoma, and Graham’s story was the first thing that came up. I remember sitting in the library crying. It was at that very moment that I realized exactly what this all meant. I took a big breath and thought to myself, I have to be brave for Graham. I can’t do much to change his situation or find a cure, but I can be brave.
Advocacy is one way I can do something to try to help. I try to tell people to wear sunscreen and stop tanning. I am in middle school, so it is hard to get people to listen but if someone in their family had melanoma they would understand the risk. I tell people about skin checks and changing moles. We raise money for research, we go to Washington DC to ask Congress for research funding, we teach sun safety and we share stories. The more I can share, the more I hope I will prevent someone from going through what he has. Graham is not only my brother, he is my friend. I cannot imagine life without him. I wish science would find a cure. Until that happens, I will continue to brave, because sometimes that is all you can do.
For those of you who don’t know my story, my name is Karolina Jasko. I was diagnosed with acral melanoma in 2016 a few days before my eighteenth birthday. I was a senior in high school dealing with a melanoma diagnosis in the midst of getting ready for college and trying to get excited for senior prom and graduation. It was a scary thing!
My mom had melanoma twice, so I was familiar with the disease, but never in a million years did I think it could happen to me. Especially at such a young age. Luckily, I had a team of phenomenal doctors and a wonderful support system that helped me get through.
Five years later, melanoma is still one of the deadliest cancers in the world. Five years later, being diagnosed with melanoma still impacts me every day. Five years later, I am stronger…
When I was first diagnosed with melanoma, my mental health fell apart a little bit. I took on a lot of the heavy, emotional feelings that my family and friends were sharing. I didn’t want them to see that I was upset and scared too. I wanted to be strong for my family and show them that everything would be okay. Everything did end up being okay; but holding in that fear during that time was hard.
An experience like this changes you. It changes your family. It changes your support system. You view things differently, you take precautions that maybe you normally wouldn’t have, and you react differently to certain things people say. You also learn to appreciate things more. When I say I’m stronger, I wholeheartedly mean that. Through my diagnosis and treatment, I learned to be stronger for my family, and stronger for me.
For all of this, I am so THANKFUL.
As Miss Illinois USA, I was able to use my title to talk through my experience. I could share the fear I felt, and the shame and insecurities I carried. But most importantly, I was able to help spread awareness and the importance of prevention.
Although I no longer hold the title, I continue to spread awareness and talk about prevention. I’m currently a full-time graduate student at Northwestern University, but I still find time to support the Melanoma Research Foundation and other organizations whenever I get the chance. Sharing our stories and supporting each other matters! Five years later, I continue to get skin checks and body scans with my wonderful dermatologist. I wear sunscreen and avoid UV Rays. Five years later I am stronger and I’m here to keep sharing my story and making sure others stay sun safe.
This year, in 2021, when Coolibar invited me to write again, I was somewhat stymied. I haven’t done anything! In the past year, I haven’t done any speaking, volunteering, or public fundraising. The activist part of my life was put on pause along with normal life thanks to the pandemic.
Like a lot of others, the past year was extra challenging. In order to feel some level of normalcy and feel like I was making a difference, I started making masks for friends, family and a local business. All the time I would have spent the year before helping fundraise for melanoma research, I spent making masks.
Still, as an activist, I felt somewhat lost and without purpose. I know I wasn’t alone in this. I kept blogging and talking about my own skin cancer journey, with the added variable that COVID-19 brought into the mix. I put off my six-month skin check and seeing my oncologist. It was a very scary time for me and other cancer survivors.
Before the pandemic, my melanoma treatment has been immunotherapy, Yervoy, which really did a number on my immune system. It’s been more than a year since my last infusion and still when I get a cold or virus, I’m sick for double the time a normal person would be sick for. My immune system basically goes bonkers.
Knowing what we knew about COVID in the beginning, I was so fearful of what could happen if I got it. I am a single mother of two girls, Luciana (9) and Arabella (6). I was beside myself with fear. I’ve now gotten my vaccine; the fear has become less but it’s still present. I fear for my friends and family who haven’t gotten their shots yet, and I wonder what it will be like once we truly find our new normal as a society. Raising awareness in 2021 is definitely going to be different than in years past. At this point who knows what’s going to happen. However, what I am hopeful for is people coming together for the greater good and all those things everyone had to put off during 2020 finally come to fruition.
Kelli Gillespie Richardson and I met when working in and around the media world. As our careers grew, so did our families. Picture two career women literally wearing their babies to press junkets and TV stations, and frantically changing diapers before jumping on air. It sounds crazy, but we made it work! Our friends suggested we share our crazy experiences with others so we took their advice and created Family Entourage—a place to celebrate and support growing families. We continue to juggle our careers, families and our growing blog network from sunny San Diego, which brings us to our need for sun protection…
Living in San Diego, we are outside year-round. We always prepare for sun exposure when we’re at the pool or beach, but the reality is that we are exposed as soon as we step outside the house. The easy solution…sunscreen! But picture this…every time you step out of your front door the sun is blazing and you need to cover your toddler or young kiddo in sunscreen. Whether you’re at the San Diego Zoo or La Jolla Beach, we have to chase down our kiddos every 1-2 hours and slather them down. This resulted in a lot of stress, sunscreen in the eyes, sand and mud sticking to our kiddos, sometimes for days. We needed a better solution for our kids, our readers and our sanity!
Kelli and I were first introduced to Coolibar when researching a TV segment on Pool Party Ideas. The amount of information available on water safety and teaching kids to swim was huge. But what we also discovered in our research was that one in five Americans will develop skin cancer in the course of a lifetime. We were blown away! This revelation really opened our eyes to the need for sun protection, and how best to use/wear it.
After that initial Pool Party Ideas segment where we tried out Coolibar, our families have been wearing it everywhere. We also make sure we’re ‘modeling’ it during any and all TV segments where we can recommend sun-protective clothing. It’s our way of using our voice to help local parents tackle sun safety. If our blog helps keep families sun-safe and cancer-free, we’ll keep spreading the word. Education and awareness is everything and we don’t want any families to be a part of the ‘1 in 5’ statistic.
As physicians we have a unique ability to provide care, comfort and our expertise to patients on an individual basis. However, being able to partner with organizations dedicated to a particular disease or diseases is a way to make an impact for a larger group of people beyond our immediate patient population. It’s an important way to make sure our care extends as far as we can stretch it.
Since my days in high school, volunteering gave me an important understanding of the impact a medical provider can have beyond the classroom and exam room. Early on I got involved in a volunteer program at a brain tumor center. The program paired pediatric patients with medical students who acted as big brothers or sisters to observe how they were handling their care. Eventually, we were able to purchase disposable cameras that the patients used to document their emotions, thoughts, and lives outside the clinic and hospital as they underwent treatment. The scrapbooks acted as a form of therapeutic expression for them and allow others to observe what these pediatric patients were experiencing. That experience and value it added to patient care and education really taught me the importance of getting involved in volunteer programs.
Something I’ve carried with me from that opportunity is the power of observation. By pairing with these children and reviewing their scrapbooks, we were able to observe their experience, learn from it, and make more informed medical decisions. As I left medical school and started my career as a Dermatologist, the importance of observation became very apparent.
When detecting and treating skin cancer, it starts with what we see or observe. But dermatologists can only observe what is near them. We need help from friends, family members, and other individuals in observing and identifying potential trouble spots.
A great example of this is hair stylists. Just in the past few years, two separate hair stylists observed ‘funny moles’ on their clients. After sending those clients to our clinic we diagnosed and treated melanoma. For these patients, the early detection of their “funny moles” led to a simple removal with a complete recovery. But, had those stylists not observed their scalps and sent them our way, their diagnosis could have progressed into something more dangerous. Not all hairstylists are aware of the role they can play in early detection. It’s thanks – in part – to the awareness built by foundations like the Polka Dot Mama. Their community outreach helps educate more people about how to detect skin cancer and understand warning signs.
When I first met Tracy Callahan (founder of Polka Dot Mama Melanoma Foundation), what caught my attention was her energy. She has always been very passionate about getting the word out about melanoma prevention and early detection. For medical professionals like myself, she’s able to raise funding for research, and create incredible events where we can get out of our clinic and observe and screen thousands of new patients.
Our practice – North Carolina Dermatology Associates – continues to support Polka Dot Mama Melanoma Foundation at free monthly melanoma screenings. We also joined other medical providers in the area to support the world’s largest skin cancer screening, which broke the Guinness Book of World Records in 2019. Through these events, we have been able to detect melanoma earlier and improve patient outcomes. It’s all about connecting with people outside of our clinic to check their skin and teach them to observe and monitor any changes.
Growing up, I loved to be in the sun and rarely wore sunscreen. And I definitely didn’t know anything about sun-protective clothing – what was that? Then, like many young women idealizing tan skin, from the age of 16-24, I definitely visited the tanning booth way too often. I’m now 36 years old and I fully regret all of those decisions.
My warrior story started pretty recently – in August 2019. I had never been to a dermatologist for a full body skin check. My skin looked fine to me. I didn’t have any abnormal growing moles so, as far as I could tell, I was good to go.
I finally went to the dermatologist for two reasons 1. we had put a pool in our backyard and I was out in the sun even more and 2. I had a friend start working with a dermatologist who advised me to go. I am so thankful I went. The dermatologist walked in the exam room, we talked about my medical history and she asked if I had any concerning spots, which I did not. She checked me over, then asked me how long I had had a little brown spot on my leg near my knee. It was new, but it wasn’t raised or shaped abnormally. I had gotten lots of new spots on my body over the years, so I wasn’t alarmed.
After doing the full-body exam, she decided to take off the spot on my leg. Then the following Monday I received a call from the dermatologist. I had always assumed I would never get skin cancer. But here I was, on the phone listening to someone tell me I had Stage 1A melanoma. I had to ask her, “wait, is that cancer?”. It was a life-changing conversation that I never saw coming.
Thankfully, I did not need chemotherapy or radiation. My diagnosis only required a wide local excision, however, recovery from that procedure wasn’t so quick and easy. Soon after surgery, my incision opened up after an accidental kick to the knee from my toddler. It took 3.5 long, painful months to heal.
The next summer, in 2020, I knew so much more about sun safety and I was ready to be outdoors. I got serious about wearing sunscreen, started wearing UPF 50+ sun protective clothing and wide-brimmed hats. There was no way I was going to miss out on pool time with my family. One of the blessings of getting melanoma is that I now know enough to protect everyone around me. If you’re in our pool, you’re sun-safe.
After years of avoiding sunscreen, going to tanning beds, and assuming I was safe, I now go to the dermatologist every 3-5 months for skin checks. Thankfully, I haven’t had another diagnosis since.
I really hope that people young and old will learn from my mistakes. Especially young women who are going to tanning beds. Please care for your health and your skin by wearing sunscreen on exposed skin every day and cover up with UPF 50+ clothing and wide-brimmed hats when you’re out for a long period of time. Also, AVOID TANNING BEDS! Trust me, you’re beautiful as you are and will be grateful you skipped the salon later in life. And if you haven’t gone yet, or are hesitating, please just go to the dermatologist. Nobody is immune.
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!