My son Stephen Daniel Chavez was a fun and loving young man with a kind heart and an infectious laugh. He was really creative and became interested in technology and video games. He graduated with a degree in Video Game Development and Design and started his career in an industry he loved.
Stephen blended his passion for video gaming with his intrinsic instinct to help others. He organized a video game tournament in Miami called Florida Lan (Flan). Gamers flew from across the country to attend the two-day event. All the money raised was donated to an organization that provides video consoles and games to pediatric hospitals and homeless shelters. He was thriving and finding ways to give back.
In the summer of 2015, Stephen was 27 years old and was sitting on top of the world. He had a job he loved. He bought himself the car of his dreams—a Mustang. And he traveled whenever possible to meet up with friends from the gaming community. Then, Stephen noticed a mole on his back. He went to the dermatologist and a biopsy confirmed it was Melanoma. They were able to remove the melanoma, and Stephen began his quarterly visits to the doctor’s office. For the next two years, doctors watched his health closely and although additional moles were biopsied, none tested positive for cancer.
By the summer of 2017, Stephen’s physician was feeling confident about his prognosis and recommended changing follow-up visits to every six months. Two weeks later, Stephen’s father and I took him to the ER thinking he had a stomach virus. We discovered he had Metastatic Stage IV Melanoma. Over the two years following his original diagnosis, the cancer had taken over Stephen’s body without anyone noticing. The outlook was grim, and his prognosis was even worse. Despite an aggressive attempt to save his life, Stephen lost his battle with cancer on November 14, 2017, 106 days after diagnosis. He was surrounded by his loved ones at home.
Before his passing, Stephen had unknowingly planted the seed for what would later become his legacy. During his stay at the hospital, it didn’t take long for him to notice how poorly designed the hospital gowns were for patients receiving infusion treatment. Stephen wanted to make a difference in easing the pain of young patients undergoing cancer treatment. In true Stephen fashion, he started designing a superhero-inspired gown for pediatric cancer patients. This was the start of Miggy’s Gift.
Miggy’s Gift also works to educate and bring awareness to the dangers of sun exposure, the importance of regular skin checks and early detection. We host seminars, distribute educational materials, and advocate within our community. One of our most successful events is our annual Miggy’s Gift Awareness Walk. Since 2019, we’ve brought together local dermatologists from the Miami Center Institute and Nicklaus Pediatric Dermatology and hundreds of friends and family members of Stephen’s to walk a mile together.
Everything we’ve done through with Miggy’s Gift since Stephen’s passing is a direct reflection of him. My son’s compassion and graciousness continues to inspire us, and people who knew him, to care for and give back to the people around us. Together, we’re helping prevent others from being diagnosed with skin cancer.
Since writing my story, I learned that my dear friend and ‘cancer buddy’ Erika Valdivia lost her cancer battle. I’m sharing my story in honor of her. Her courage, her strength, and her love for everyone she met. Through all the bumps and missteps of my cancer journey, she was there for me.
I grew up like many Minnesotans, I spent summers outside on the lake at the cabin, and I loved it. At a very young age I learned to love the water, nature, being outdoors, and the sunshine. I’ve carried that with me throughout my life. Even now as an adult the lake is truly my happiest place and our cabin has forever been my favorite place on Earth.
In October 2013, I made the decision to leave my Minnesota roots and move to California. The one thing I had always promised myself was that I would live near water—or at least live a short drive to the beach. I started in Redondo Beach, moved down to Huntington Beach, and am now in Laguna Niguel. Since I’ve lived so close to the beach for the past seven years, I have spent a lot of time walking, exploring, logging my steps…just enjoying the sunshine and being outside. As you can imagine, I’ve stayed pretty tan as a result. I was never one to lay out, use tanning oils, tin foils, or go to the tanning salons. I don’t even wear a bikini! But I do love being tan and always have.
One of the reasons why is (I’m sure) all too common…I struggle with mental health issues. I struggle with body dysmorphia issues and always hated how I look when I’m pale. If I saw myself in the mirror and I was pale (with dark brown hair), I would need to fix that ‘flaw’ to feel better about myself. I have spent plenty of time outside, I’ve used a lot of sunless tanning lotions, and I have not always been great at wearing or re-applying sunscreen, all in an effort to keep a little color. Come September 2020, I was working at LifeTime Fitness and noticed a bump on my face. I didn’t know what it was from, so I called around to different Dermatology offices and got in the next day as a new patient. When I went in, they were incredibly thorough and had a lot of questions about all the moles I had and when my last skin check was. I had been pretty good about going in for skin checks over the years, but 2020 was tough. So many places were closed due to the pandemic. Until I found this bump, I had decided to patiently wait until places opened back up.
During that visit, they found several spots they were concerned about and wanted to take off, specifically three spots. One was on my right buttock (which I swear has never seen the sun), another at my waist right at the pant line (again, I don’t think it’s ever gotten a sunburn), and the other spot was on my right arm.
The spot on my arm had been there for years and previous dermatologists had been watching it, so I didn’t think anything of it. That was until I received not one, but three phone calls from my new dermatologist following my initial appointment. It became a very different story. I had to go back in two more times for them to cut more off. Then a third time when they said they wanted to do an excision because it was melanoma.
When I heard the word “melanoma” the world started spinning a little, but I figured all would be fine. I was going to stay calm.
Fast forward a couple weeks… I did my best to approach my diagnosis as best I could. I got multiple opinions regarding my diagnosis and treatment options and was ultimately referred to an oncologist. They performed the excision on my arm successfully, but the cancer had already spread to my lymph nodes. I had melanoma in the lymph nodes in my groin, armpit, and neck/chin area. They started doing treatments immediately and decided to do T-Vec injections, which is an immunotherapy chemo treatment that gets injected directly into the infected lymph nodes.
Initially, November and December weren’t too awful. Most days I just felt like I had the flu–-nausea, chills, fatigue, exhaustion, and pain. I didn’t like it, but I told myself it was nothing I couldn’t handle. Through it all I kept working full-time, partially because of my mental health. The thought of going through all of this and NOT having my colleagues and friends around me sounded like an absolute nightmare. While people disagreed with my choice, I had to make the best decision for me. No one but me knows how deep some of those battles are, and I had to trust myself.
One of my unforeseen complications was a BIG one. Before I ever had cancer, I had Crohn’s Disease—an autoimmune disease. My friend Erika was with me to celebrate when we finally found a medication to manage the disease. That medicine, however, had a known side effect…increase the risk of skin cancer. Well, it worked!
With the combo of Crohn’s and Melanoma, my body has been put through a lot. I have a lot of days where my mental struggle is rough. I question a lot and I am adjusting to being pale all the time. I’m trying to see myself as beautiful regardless and am working through the physical struggles. The part that has been one of the biggest challenges for me is that I grew up playing sports, competing, and have a real love for being active and working out—and how your body, mind, and spirit feel from it. When my mental health gets the worst of me, I take it out on the gym. However, I have lost a lot of strength and weight and I can’t do what I used to be able to. It feels so defeating. Now, I have days where I leave the court or the gym and feel far worse than I started. I just cry because I can’t do what I need to do to get the frustrations out. Instead, I’m just reminded of where I am at and what I am dealing with. I go through a mental, physical and emotional cycle…then grace comes in.
Giving yourself (myself) grace is just as important as giving others grace. Cry when you need to, take a nap, and don’t beat yourself up for any part of this. Your body is fighting a hard battle. You need to allow yourself space and grace when you are going through this. It isn’t going to be easy, it isn’t going to be pretty, but you are absolutely stronger than you think.
The team from Coolibar really helped me with this. They helped me feel less trapped by my diagnosis. I was able to get back outside and live in good faith that I was protected, rather than dealing with the constant fear of being in the sun. Their mission was exactly what I needed. They not only make clothing that keeps us safe, living and finding joy…their outreach and support reminds us that we are strong, we are BRAVE and we are fighters. They share their warrior stories so that we know that we’re not alone even though the statistics are scary. For that I’m grateful.
I have not been good at sharing my story, so when they asked, I was hesitant. When I was first diagnosed, my parents and a best friend were much better at it. It was because of them that I was introduced to Coolibar.
One of the reasons it was hard was because, as I was trying to process all of this, I kept hearing three things from people…
You did this to yourself. You just loved being tan and outside too much.
You will never be able to be outside much again, and you must be covered from head to toe.
Oh, this is very treatable, it is no big deal. They can just cut it off.
None of those three things should ever be muttered to someone in my position. The amount of guilt, shame, embarrassment, sadness and disappointment in myself that those words brought to me was indescribable. That is why I stuck to what I know best “don’t talk about it, just deal with it”. When I started sharing my story with Coolibar they helped me overcome these negative thoughts. I know they’ve done the same for many others working through unjustified guilt.
Being vulnerable, letting others in, and sharing your story can help yourself, and someone else. That is why I did this. Skin cancer is hard, no matter how strong you are, and it can also make you feel like you are the least strong person on the planet! Sharing can also bring support, love, and care into your life—which we need when we are going through something challenging. Every single little piece of kindness means so much to me right now. Every kind word, every encouraging word, and every prayer… means everything because I am so grateful for it. It carries more weight than it ever has. You learn what really matters, what is important, and what deserves your attention versus what doesn’t matter.
I’ve had to block out some shame and negativity to get through my diagnosis and treatment. But that’s okay. You can say ‘NO!’ to people, places, ideas, thoughts…that aren’t helpful or bring you down. No is a complete sentence.
In an effort to support you, the person reading my story, in whatever you’re going through…
Know you are strong. You are loved. You are worthy. You have prayers and support. If you ever need anything, reach out for help. There is always someone. I’m here for starters! If I don’t have all the answers, I can offer an ear to listen and a shoulder to cry on. After losing my ‘cancer buddy’, my will to fight this is stronger than ever before. If you are on this journey, in this fight, and know others who have lost their battle… do it for them.
Growing up in Phoenix, Arizona, my family spent most of our days in the water. The sun here is always shining brightly (after all it’s known as Valley of the Sun) and summers are long and hot. Swimming has always been a wonderful way to get out of the house and cool off. When I was young, my family would escape the city heat by going on camping trips or hiking the cool forests in Northern Arizona. We loved looking for caves and playing in mountain streams. During my teenage years I started driving to the lake with friends. I continued to be carefree and have fun in the sun!
Skin cancer touched my life for the first time in August 2002, when I was 24. My husband and I were expecting our first child and had noticed three moles grow substantially during my pregnancy. Luckily, I decided to pay my first visit to the dermatologist. The moles were benign. Good news! Even better, I started scheduling annual skin checks and giving myself monthly self-exams.
Since that initial check, I’ve had more moles removed than I can count. My dermatologist had started calling me ‘Holy Moley’ thanks to all my biopsy’s. At 29, a mole was removed from my back that came back as a ‘severe dysplastic nevus’ which meant the mole was very close to becoming cancer. At 29 years old, I was close to getting cancer!! I was shocked, but even after this, I still was not protecting my skin enough. I increased my use of sunscreen, but I should have been more diligent.
Fast forward to April 10, 2018, my 34-year-old sister Rose was diagnosed with melanoma. A tan mole that was smaller than a pencil eraser on the back of her neck was catching on her shirts and had started to itch. After further tests, they found melanoma in her lymph nodes and Rose decided to go through with a neck dissection where 40 lymph nodes would be removed for even more testing. 2018 quickly turned into the year we spent at the hospital…
Memorial Day weekend 2018, my vibrant, active husband was experiencing extreme fatigue, unlike anything I had ever seen. He had been recently diagnosed with pneumonia, but the antibiotics weren’t working. The following week, he ended up in the ICU with a 104-degree fever and a mysterious illness that was causing his oxygen levels to drop. Then a little over a week later, June 7, 2018, my husband was put on a ventilator as Rose went in for her neck dissection. Results confirmed she had Stage IIIB, Nodular Melanoma BRAF+.
While Rose recovered from her surgery, my husband’s condition worsened. He needed to be transferred via helicopter to another hospital to be put on Extracorporeal Membrane Oxygenation ECMO. My husband was experiencing complete pulmonary failure. While Rose healed, she spent every day at the hospital with me. She was in the lobby when I arrived every morning. She was a microbiologist, so she researched her condition and assured me that treatments were advancing, and she’d be okay, and helped me focus on my husband and navigate and understand his treatments. After 39 days in the hospital, my husband finally recovered. The mysterious illness was Valley Fever, a fungal infection caused by coccidiosis organisms found in the Southwest of the United States. Shortly thereafter, Rose started immunotherapy (OPDIVO), which she called ‘a living hell’. By August, Rose had pain in her hip to the point where she couldn’t run or exercise. In mid-September, her treatments were on hold due to extremely elevated liver enzymes. By late September, she was admitted to the hospital due to extreme abdomen pain and bloating. It was then that an ultrasound discovered a spot on her liver and a biopsy confirmed more melanoma. Her scans showed widespread disease She had a rare condition known as Hyperprogressive Disease (HPD) which causes the cancer to grow aggressively instead of shrink. My heart was broken and I was in shock. Our last hope was BRAF & MEK inhibitors. Unfortunately, by the time they arrived, Rose was entering liver failure and visible decline. Six months from Rose’s initial melanoma diagnosis, she passed away on October 9, 2018 at the age of 35.
After losing Rose, my family started annual skin checks. An older brother of mine found out three months after she passed that he had melanoma in situ (meaning on the top layer of the skin) and basal cell carcinoma. In 2019, I had two atypical melanocytic proliferations on my face. We were both lucky to have detected these spots early! During my most recent check one of my biopsies came back as squamous cell carcinoma. My first skin cancer diagnosis…DEEP BREATH! We ultimately decided chemo cream would be best to treat the area and I completed the treatment at the end of January 2021.
After everything we went through as a family, Rose has always held a precious place in my heart and life. I’ve managed my grief by honoring Rose by spreading awareness of skin cancer and educating people on the need for protection and prevention. I encourage everyone to…
Wear a hat! They’re a great accessory and protection for your scalp.
Perform monthly self-checks and if you see something, get it checked!
Don’t forget to schedule your annual skin checks with a board-certified Dermatologist.
I do not believe in fearing the sun but being smarter than the sun. This is a preventable cancer, and I don’t want anyone else to experience the pain everyone who loved Rose still feels. Rose was so much more than a young woman who died of melanoma. Everyone that loved her will continue to carry her with us and do our part in sharing her story. My sister and her story save lives.
I, like so many others, have been worn down by everything this past couple of years. Yes, I have been down dark paths in my mind and thankfully am always able to see light and move back towards positivity so as not to be constantly and completely consumed by it. The pandemic has made it more difficult for sure, but that is just the tip of the iceberg.
My skin health journey began with tremendous loss and heartbreak, guilt and anger. However, this catalyst has kept me focused and driven for the past two years. Allow me to elaborate as I appear to be open to so many, those that know me best know I keep all of my most intense thoughts and feelings solely to myself.
In April 2018, my sister Rose was diagnosed with nodular melanoma. She was always a fighter, so she immediately was on the warpath and was very aggressive with her treatment plan. I knew she was preoccupied with her battle and she was busy. I believed we’d had more time to truly catch up later. We’d have another weekend or family gathering or we’d get around for a cocktail. I kept putting off my want to just hang out with my sister, there would be a better time later.
I was never able to have that last conversation with my sister in person. In September 2018, I was extremely short of breath which was causing panic attacks. I had never experienced anything like this. 27 years of heavy smoking—something I did fully knowing the damage it does—had left my lungs weakened and prone to infections. I had walking pneumonia, and severely damaged lungs and I would be diagnosed with early COPD. At that time, Rose was in the hospital, her body racked with pain and ailments unknown, but she was still in good spirits. Because of my pneumonia I wasn’t allowed into her ward.
When she was moved to a room in hospice in October, I was finally allowed to be with her. The morphine conversations were short and of no real importance, but I was still glad to have them with her. She had two requests of me in those final days; to quit smoking and to take my skin health seriously with annual skin exams.
I had my last cigarette and first full body skin exam late February 2019. Both milestones were much simpler than I’d expected. I had been to dermatologists before and had a couple biopsies, an excision or two, but no one ever seemed overly concerned with my skin.
This visit was different. Three biopsies and a pretty positive experience, almost routine feeling in a strange way. I should have felt so much different due to my recent loss and family history, but I actually enjoyed it. Possibly because I was doing it for Rose. I mean, I just let someone thoroughly and meticulously examine every inch of me… with a light and magnifier. I have been pretty modest about my body most of my life but somehow, I was fine with this.
I got a call a week later with my results on March 4, 2019, which seemed odd because they told me to call them in two weeks. The person on the phone was in good spirits as she told me my results one at a time so I could jot them down.
Left mid back: dysplastic nevus with moderate atypia
Left upper back: dysplastic nevus with moderate atypia…
I was thinking to myself “what in the hell does that mean? Maybe I should write this down!” And then my world dropped into slow motion, my ears felt like I was under water, everything around me blurred…
Mid clavicle: melanoma…. static
I heard nothing else for what seemed like a minute. When my brain slowly began processing what was being said again, I was booking an appointment for a slow Mohs procedure in six weeks. She was so polite yet nonchalant about the bomb she dropped on me like it was no big deal. Clearly, she didn’t understand, she didn’t know my history, she didn’t know.
I was working at the time and had taken the call with a client in my chair. I walked back into the shop, sat down and quickly covered the work I had done on my clients tattoo so far with a bandage. I told her I had to go home to talk to my wife. I had to leave. Luckily, she could sense something was wrong and my insistence was justified. I called my wife and told her I was heading home and to meet me. I would explain at the house.
When we got home, I somehow managed to get the words out through the tears and cracking speech. The amount of guilt I felt at this moment would only be matched at one other point in my life so far. After a minute or so of consoling me, she began to take charge, which is what I needed. She quickly called the scheduling department and got me an appointment in two days instead of the six weeks. She handled it all like a seasoned veteran. Now, I could focus on what I had to do, tell my family and my children.
I didn’t want to bring up all the pain and fear that we all just gone through. I decided to tell my sister Dee first as she was the most knowledgeable in the family after researching so much with Rose. She asked a ton of questions which I had so few answers for, but she gave Rachael and I a better idea of what to ask the doctor at my next appointment. At my slow Mohs procedure, I learned it was melanoma in-situ, essentially the earliest stage of melanoma. We caught it very early. Good looking out Rose, message received. All of the melanoma was removed in the first procedure. In the following weeks, I had both of the other biopsied moles excised without any complications or surprises, both tested with clear margins.
In the past two years, I have had total of 37 biopsies, one melanoma in-situ, 15 dysplastic nevus with varying atypia, and two basal cell carcinoma removed. I credit my sister for saving my life. I now use my job to educate and encourage others to get skin checks annually. I promote skin health through proper use of SPF sunblock and UPF clothing. This goes hand-in-hand with what I do for a living already, excessive sun exposure fades tattoos. Due to my sister’s story and me advocating for skin exams, two of my friends have also discovered they had melanoma and basal cell carcinoma. Rose just keeps saving lives.
It is not about fearing the sun or your skin, it is a matter of respecting the sun and protecting your skin. There is no restriction when it comes to outdoor activities with proper preparation.
A few years ago, my wife was diagnosed with a rare form of melanoma, ocular melanoma. Because of this, I decided to get yearly skin checks with a dermatologist. During my very first visit, I had the doctor look at a suspicious freckle on my calf. He said it was nothing. The next year, I went again to a different dermatologist and had them look at the same freckle – still nothing. Then the third year—thanks to different jobs and changing health insurance—I went to another new dermatologist who looked at the freckle and said, “nah, it’s nothing. But do you want me to take it off just to make sure?” Better safe than sorry, right?
And it’s a good thing he did! A week later I got a call saying that it was melanoma and .9m deep. Because of its thickness, I had to have a sentinel node biopsy. This is where they remove the closest lymph node to the cancer to see if it holds any seeder cells and if a more widespread treatment would be necessary. Thankfully the lymph node was clear and only a localized removal of the surrounding area of my calf was required.
So now, I officially have a history of melanoma and I’m getting skin checks every three months to carefully monitor anything suspicious. During one of these checks, we found another, less suspicious freckle on my left arm. The doctor said its probably nothing but given the circumstances of the last freckle we decided to take it off anyways. A couple of days later I got a phone call, guess what? It’s melanoma. I went back into the office to remove the surrounding tissue and make sure everything was gone.
Near this latest spot was another freckle that my doctor advised we “keep our eyes on”. Nope, at this point I just want everything off. Looks a little funny? Take it off. I’m reminded of that scene in Goodfellas about borrowing money from a gangster. “Your house burnt down? F**k you, pay me! Your mother just died? F**k you, pay me!” The freckle has an unusual border? F**k you, cut it out. Funny coloring? F**k you, remove it!
But I am no Henry Hill, so at the time, I agreed to just watch it. I did this for a year and a half, but in the back of my mind was always thinking about the other freckles that were ‘nothing’. I said to yet another new dermatologist, “we’ve been watching this one, but I think I’d feel better if we just remove it.”
Now it’s just getting repetitious, they take it off…a few days pass…another phone call…another problem. This time it was a ‘severely atypical dysplastic nevus’. Which just means “we didn’t look at all the cells, but what we did see is ‘No Bueno’, it’s got to go”.
The moral of the story…
Speak up and advocate for yourself.
I can’t imagine where I’d be if I just took their word for it every time they said it was nothing. What if I hadn’t found a dermatologist that offered to take it off just in case? Would I now be fighting skin cancer that had spread throughout my body? Would it have landed on one of my organs so I would have needed to undergo chemo or radiation? Or would I still be living in the sweet spot of ignorance before I showed any clinical symptoms; all while the “melanomies” were gathering in numbers and strength for an all-out assault?
It’s easy to remove a suspicious spot and have it tested. The removal process doesn’t hurt, the recovery is simple, and the definitive answer is always better than a ‘it’s probably nothing’. If you know your ABCDE’s of melanoma—Asymmetrical Shape, Border, Color, Diameter, Evolution (or change)—use that info to advocate for yourself and have your concerns taken seriously. And when in doubt, have it removed.
Mercer’s (Darren’s Son) Story
My name is Mercer and I am 13 years old. I have two parents that have been diagnosed with melanoma. Yep, that’s two! When I was only seven, my mom found out that she had a rare form of melanoma called ocular melanoma (OM). At the time, I was very confused and was very scared that my mom would not be ok. We were constantly getting medicine and going to the doctors. But we were brave together and told pirate jokes and talked all about what OM was and how we would kick its butt together as a family. Eventually, she had a procedure that removed her eye and I was terrified. She came out eight hours later, half blind and my beautiful mom.
Our lives were finally getting back to normal until just about a year and a half ago, my dad was diagnosed with skin melanoma. And I was again, very nervous. He had to have a procedure to remove the melanoma from his leg and his arm twice, and it went really well. He had three melanomas within three months (kinda crazy, right?). Now both my parents look out for themselves to insure nothing else comes back. We all get our skin checked and eyes checked every year, we wear sunscreen every day and try to stay covered and still enjoy the great outdoors. Also, I advocate for melanoma in Washington DC to stop other kids and people from going through what me and my family had to go through. #BeBrave
My melanoma story started when I was twenty-four and only a few years into my professional and young adult life. I was working full-time as a Human Resources Generalist in downtown Saint Paul and teaching dance part-time in White Bear Lake. The theme of my life was busy, busy, busy. I had spent the first part of 2019 travelling to college career fairs for work. It wasn’t until April that I finally got in to see the dermatologist to check on an eczema breakout on my hands. Here is my timeline…
April 11, 2019: I went into the dermatologist to get eczema cream and have a mole on my calf looked at. The perfect way to describe the mole was that it was the size and height of the eraser on a #2 pencil. It started bothering me sometime in the Fall of 2018. I couldn’t remember if it was flat or if there was anything there before, but suddenly it was really raised and was annoying me because I would have to be careful shaving my leg around it. The dermatologist inspected it and felt that it wasn’t anything overly concerning. Thankfully, she had it scraped and biopsied.
April 16, 2019: After my appointment, I forgot about the biopsy. I went right back to working and staying busy. When they called to give me my results, I actually ignored it because I was in a meeting, and then just went about my day. At 4:45pm, I finally listened to the voicemail from the dermatologist office letting me know I needed to call them back to walk through my results. Their phone lines closed at 4:30pm, so I would have to call back the next morning.
My gut dropped, I knew something wasn’t right, but I finished my workday, then went to teach dance at night. The nerves were there all night. I decided to stay at my parents that night, just so I could have my Mom with me to call in the morning.
April 17, 2019: At 7:59:59am my mom and I called the office together. For the first time I heard, “Taylor, your biopsy came back as Melanoma, I’m so sorry”. I didn’t even really hear the rest of the conversation. Thankfully, my Mom was there to listen. Having someone to help you absorb information at every appointment is huge!
Cancer was in my life… and it was associated with my name. They couldn’t give me any more information other than telling me I would need surgery and I was being referred to a Plastic Surgeon who specialized in Melanoma.
April 18, 2019: We met with Dr. Economou at 10:00am. He walked through the pathology of my mole. It was slow growing (3 on a scale of 10). At the intermediate depth range 2.33mm with no aggressive features. He explained that melanoma is spread by the lymph system, so my lymph nodes in my left groin would need to be checked. From just feeling for swelling/hardness, he didn’t feel anything, so we were feeling positive that they would be clean. Of course, I had spent the previous night googling (a horrible idea) and I knew that if the cancer had left my leg, it could be anywhere in my body, and the anxiety was terrifying.
He explained that he would be removing an area of skin on my lower leg around the mole and that I would have a full-thickness skin graft. The skin would come from the incision site on my groin where they would remove a lymph node to be biopsied. Surgery was scheduled for the next Tuesday at Abbott Northwestern.
April 23, 2019: My “posse” (Mom, Dad, stepdad Tony, and my boyfriend Charlie) and I arrived at the hospital for my appointment. First step of the process was to have a radioactive dye injected into the mole site, where it would travel up my leg and light up the lymph node that the ankle was ‘first’ supported by. While I didn’t acquire any superpowers from the radioactive dye, my X-Ray did show that two lymph lighting up meaning both may have to be removed.
My posse and I checked in at the surgery center and waited for the doctors to take me back. My surgery team introduced themselves (they were the BEST most caring people) and made me feel so supported and reassured. I was hooked up to my IVs, gave my posse a hug and a kiss, and walked to the OR. (Side Note: I was that teenage girl that sobbed like a toddler from the anesthesia for my wisdom teeth removal. Apparently, that happens when you’re really nervous.)
I walked in and saw all the machines, instruments, and bed that I was going to be asleep on. When they asked me “How are you doing?” the only think I could say was “ahhhh well this isn’t like Grey’s Anatomy.” They reassured me by saying “Nope! We’re real doctors!”. I laid down on the bed and was hooked up to many machines and the tears started to come. Luckily, the nurse anesthetist asked me about Charlie, and I talked about him and how happy he makes me until I was asleep. After surgery, Dr. Economou explained that he removed two lymph nodes (which would be HUGE for me later on). I had a pressurized bandage stitched to my skin graft and a boot on to ensure my calf had no movement. It was over!
April 25, 2019: After a lot of pain the day after surgery, switching to stronger pain meds, and almost passing out the first time I saw my groin incision, I was recovering at home and got the results of my biopsies. The margins around the mole were clean. The second lymph node (farther away from the mole) was clean. The first lymph node was not, it had seven individual cancer cells. They weren’t multiplying/dividing yet, but they were there. This meant that I was officially in the Stage III Melanoma category.
Dr. Economou reassured me that, other than being able to say that the lymphs were both clean, this was the next best outcome. We were hopeful that since no cancer cells had gone to the second lymph, the rest of my body was clean. I would have to get a PET/CT scan to confirm. I would also meet with an oncologist to discuss immunotherapy, and a general surgeon to discuss more lymph nodes being removed.
April 30, 2019: I had my PET/CT scan.
May 1, 2019: I got the call that there was ‘no evidence of disease’ – marking the first anniversary I hope to celebrate the rest of my life. TODAY – March 1, 2021: Since 2019 a lot in my life has changed. The year after I was declared NED, I underwent a year of immunotherapy—Keytruda (pembromiliza)—and worked on just getting through it. I finally had a chance to create space for myself to process all that had happened.
The biggest change for me was leaving HR – I took time to evaluate what was important to me in a career long term, and I went back to one of my original passions in undergrad. I wanted to become a therapist. I was accepted into graduate school at UMN in the Summer of 2020 and am now in my second semester of their Integrated Behavioral Health program. It’s the first step to becoming an LPCC (licensed professional clinical counselor). I even started working part-time as a health unit coordinator at Regions Hospital. I’m also looking to buy my first house with Charlie, who was the best supporter throughout my entire journey for me and my parents. My habits have changed too. I started buying and wearing UPF 50+ clothing and I tell anyone who is willing to listen about sun safety! Internally, the gift of coming to terms with your own mortality at 24 makes it much easier to say ‘no’ to the things that don’t bring me joy, to practice gratitude every day, and allow myself to show up just as I am. I’ve come to love my scars as they show strength, I never knew I would have, along with an appreciation for my body that is so much deeper than my skin’s surface.
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.
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.
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.