By: Chad Novak, Director of Studio Photography at Coolibar
On January 1st, I moved from a high-deductible pay-full-price-out-of-pocket-for-everything insurance plan to a low-copay and no-referral-needed plan. It was exciting for me. I felt like Andy in that episode of Parks and Recreation where Andy and April realize they have medical insurance and go to the doctor for literally everything. I felt that free.
My first doctor visit with my new insurance was to a dermatologist. This was my first visit to a dermatologist in more than a decade. I had no prior visits to this doctor and I was unfamiliar with this doctors process. I remember feeling a little surprised at how many medical professionals were in the room with me (5 to be exact). They stepped out for a minute to allow me to change into a gown, and then they all returned a moment later (all 5 of them). I was overcome by modesty in the presence of all these strangers, but the doctor put me at ease and began her full-body check.
From head-to-toe, armpit to fingertip, she examined all of my moles. “Nothing strange”, about any of them she said, except one. She asked me about a mole on my back, and I said, “What mole?” I had no idea there was an odd-shaped multi-color mole on my back. And how would I, I don’t have a way to look at my back regularly and certainly not something smaller than a pencil eraser. She asked if she could biopsy the mole and send it to a lab for testing. Of course, I agreed. And I was on my way.
A few days later I received a call from my dermatologist. I learned that I results from the lab test revealed the mole was melanoma. I was shocked. She explained that it was Stage 1A and asked for me to schedule an appointment to have it removed right away. I asked if I could just “let it go”, to which she replied, “That is not an option”. I couldn’t help but feel scared in that moment. That went from zero to serious fast. My mind raced with fears about the cancerous cells spreading, and I felt unsettled about the fact that if I had not chosen to go to the dermatologist when I did, I could be facing a life-threatening situation.
Here is an alarming fact: It’s possible for melanoma cancer to spread to your entire body in as little as 4-6 weeks. 45 Days – and you might be terminal. I had no idea things could go so bad so quickly and I would not feel a thing in my body. It’s hard to wrap my head around that. But it’s real. And it opened my eyes to the dangers of letting things go. Or just acting like I’m fine.
My diagnosis opened a pandoras box. I have full body exams scheduled every 90 days for the next 5 years, I have had multiple treatments on my incision area to reduce scarring, and I just learned that my life insurance was dropped. It feels like a lot. It became a bigger deal than I wanted. But had it gone differently, I may not be writing this story.
Here’s what I know. The decision I made saved my life. I think about that once and while to remind myself that I’m not invincible like I think I am. This experience taught me an important life lesson: It is not a sign of weakness (as a man) to go to a doctor.
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.
Warriors. Yes, that is what we are! I want to share with you stories from two very different perspectives.
Let’s start with me. I am a practicing Dermatology Physician Assistant (PA-C) and have been doing so since 2003 in Chicago, IL. I am compassionate about my career and even created a social media page, Savvy Derm Diva to share my knowledge with and educate the public. There is so much misinformation posted on the internet, and I was on a mission to make sure things posted by non-professional ‘skin experts’ were corrected. I was so focused on my blogs and speaking events that it started to be another full-time position. Luckily for me, my husband Bob is very supportive and would jump in and help me as much as he could. (He has become a very good photographer for my endeavors, by the way.) Savvy Derm Diva became a ‘must-read’ skin care blog, Q&A column, and a trusted source to follow on social media.
As you can imagine, my husband has been inundated with everything skin, from products to becoming educated on different diagnoses, to editing skincare brochures and posts. Speaking from professional experience, like most men (sorry guys), before I met him, he barely used moisturizer, sunscreen, and did not follow a proper skincare regimen, to say the least. This was quite an adjustment, many years in the making and my most challenging patient of all. Bob would never get sunburned, like ever. He always has a nice summer glow that many people would envy, myself even, as I would fry like a cherry tomato without wearing sunscreen for five minutes. Yes, it’s true!!
One day, three years ago, my mole patrol eyes noticed that a mole on his right upper extremity looked different. Examining it closer with my special trained eye and tools, it was a picture-perfect example of a mole that looked wrong. As a persistent wife and Dermatology PA-C, we immediately scheduled a biopsy. Honestly, I cried with the diagnosis and was in complete disbelief! Savvy Derm Diva, a Dermatology PA-C and a blogger about skincare, had a husband affected with melanoma; this just could not be. But it was. Luckily, it was a pathology-proven melanoma in situ diagnosis, a melanoma in its early stage that was fully treated with excision. Thank goodness!
The diagnosis was a wake-up call to my husband making sure he had his sunscreen and Coolibar fashion on ALL THE TIME! If it were not for regular exams, we would have never found the 2nd one on his right chest a couple of years later! Again, another melanoma in situ that was quite large but not seen to the naked eye and, this time needed additional topical chemotherapy. My husband is now cancer-free and my sidekick advocate. He is now the poster boy for proper skin care who lectures on the importance of regular skin exams, sun protection, and the seriousness of the diagnosis.
As a provider, I am incredibly proud of my profession but prouder of my husband, as he is the true educator in the family and has made a difference by speaking out on the awareness of skin cancer. The reality is, melanoma can affect anyone, anytime, anywhere on the body, even a Dermatology PA-C spouse and a Savvy Derm Diva Blogger. I call him my Savvy Derm Dude. Now, we both blog about it to create public awareness! Our message here is to protect and get checked because it can save your life!
Since her diagnosis in February 2019, Dayanara has courageously and openly shared her experience with millions of fans and social media followers, offering an intimate and honest portrait of the physical and emotional challenges that can accompany melanoma diagnosis, treatment and recovery. When we reached out to her to ask for support of our 2019 This is Brave campaign, she didn’t hesitate. Even though it was early in her treatment, she was ready to share and help raise awareness.
She finished her treatments at The Angeles Clinic and Research Institute in February 2020 with her incredible family by her side…all wearing their “This is Brave” shirts.
While we were all celebrating her incredible milestone, she was already busy looking for ways to continue helping the Melanoma community. In 2020 she joined the Melanoma Research Foundation’s #GetNaked campaign.
She shared her partnership in both English and Spanish on October 1, 2020, the beginning of National Hispanic Heritage Month:
“Today I’m proud to join the Melanoma Research Foundation’s #GetNaked melanoma awareness campaign! As a stage 3 metastatic melanoma survivor myself, it’s incredibly important to me that everyone understands how serious this cancer is and that a monthly full-body skin check could save your life. Melanoma does not discriminate – people of every age, race and gender are at risk.”
Dayanara urged her followers to join her in sharing this life-saving advice to their own friends and loved ones.
Dayanara took This is Brave international when she participated in a telethon to support the Oncology Hospital of Puerto Rico! We are beyond grateful and in awe of all she’s done for the cancer community.
“We have long admired Dayanara’s commitment to increase awareness among millions of people in communities across the world that may believe they are not at risk,” said MRF CEO Kyleigh LiPira. “Sharing her story through the #GetNaked campaign will help to dispel the dangerous myth that melanoma only affects older people or those with fair skin, while in truth it does not discriminate by age, race or gender – everyone is at risk.”
In the nearly two years since Dayanara announced her diagnosis, dermatologists have reported a significant increase in skin exams among Hispanic patients. Many new patients cited her story as their motivation to make an appointment, a public health phenomenon that has since been named “the Dayanara Effect.”
“As part of the MRF’s #GetNaked campaign I hope to continue to create awareness about the importance of regularly checking your skin and yearly visiting a dermatologist for a full-body exam. While melanoma can affect anybody, early detection is the key to saving lives. I had misconceptions about skin cancer and one of my missions is for every single person to know the risks and how to detect it early-on,” Dayanara expressed.
We are forever grateful for all Dayanara has done, and will do to help protect and prevent. Thank you Dayanara! <3
At age 27, I was diagnosed with melanoma. At a regular skin check, I had a couple of areas biopsied on my skin, all of which came back benign. As I was leaving the appointment, I had a gut feeling about another small mark on my arm that had been bothering me. The doctor said it looked fine and didn’t think it needed to be tested. However, my gut told me something was off, and I wanted to triple-check. This ‘gut feeling’ saved my life and for that, I am forever grateful.
Cancer is a big and scary word. It takes up the entire room. This word was very familiar to me, as a few of my close family members had also been diagnosed with melanoma. I grew up with a strong awareness around skin cancer and the dangers of the sun. Much of my childhood was at the beach lifeguarding or spending time outdoors with friends and family in San Diego. I was very careful about protecting my skin with sunscreen and took preventative measures not to over-extend time outside.
In my case, I was extremely fortunate that the melanoma was detected early, and I did not have to go through chemotherapy or radiation. After finding the right team of doctors, my cancer was removed surgically, and I was only left with a scar on my arm. This scar is my forever reminder to stay sun safe and be grateful for each and every day J
Melanoma can occur at any age.
Get regular skin checks. Save yourself, your friends, and your loved ones. Save the strangers down the street too!
Through @OnePelotonCouple and our partnership with Coolibar and the Melanoma Research Foundation, my partner Alessandro and I hope to inspire others to stay active and have fun, while staying sun safe and spreading the word! When we partnered with the San Francisco Marathon and Miles for Melanoma in 2020, we were shocked at the number of people that reached out to share their stories around melanoma. Whether it was the community of survivors, current warriors, friends of friends, colleagues, family members, etc., almost everyone had a story to tell. Even though melanoma is less fatal on average than other forms of cancer, it truly is one of the most preventable.
No two cancer stories are the same. Each cancer story is unique, and I am not here to generalize or speak on behalf of all cancer survivors and warriors currently fighting this battle. My intention in sharing my story is to spread awareness for the disease and the importance of listening to your body and taking care of your health. In doing so, I hope to inspire others to share their stories and start the dialogue around melanoma.
Moral of the story is cancer is scary. Cancer is powerful and SO are you! You will surprise yourself. Our biggest fear in life is not that we are inadequate. It is that we are truly powerful beyond measure.
Prevention starts with you. Let’s do this!
Update: A week after writing this blog, I had a skin check and two more areas biopsied on my face. Unfortunately, both came back as skin cancer and I will be having two Mohs Surgeries this month to remove them. I feel blessed to have detected these early and to now join the family of survivors who have fought skin cancer more than once! Hat trick, anyone?!
I am also grateful for my intuition which again in this scenario helped save my life.
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.
Today, I have a smile on my face. I open the door, eager to leave the dermatologist office, and I am greeted by morning sun. I finally have a clean bill of health! No biopsies, no cuts, no burns, no stitches. Being proactive is paying off!
As a Southern California baby boomer, I was raised by parents who enjoyed time on the beach—in the ocean and relaxing poolside. Despite my fair skin, I equated being tan with being attractive and healthy. As a young adult, I was aware of sunscreen, but not diligent in using it.
I was in my 30’s when a doctor noticed that I had a growth on my upper arm. The doctor cut it out, stitched me up, I left his office and didn’t give my skin another thought. I ignored what should have been an opportunity to learn and take better care of my skin. To be proactive.
Fast forward twenty years. I noticed a tiny red spot near the tip of my nose. I treated it the way I used to treat things I didn’t like, I ignored it. My failure to act was a big mistake. Eventually, the spot bled, which led me to a dermatologist who prescribed a strong cream to apply over a few weeks. A year later the red spot returned, again bleeding. A different dermatologist took a biopsy, explained I had squamous cell carcinoma and referred me to a dermatologist/plastic surgeon’s office. The four-hour MOHS surgery on the tip of my nose was the wake-up call I needed to pay diligent attention to my skin.
A few years later, in my 60’s, I noticed a new small growth on the top of my left hand. Within a week I went to see my primary physician who referred me to a dermatologist. Again, the biopsy result was cancer. Similar to my nose surgery, the MOHS surgery on top of my hand was also in an area where there is little skin, resulting in a long healing time.
Then, last summer in 2020, I noticed a new small spot on my nose. I immediately called the dermatologist who saw me within days. He found two other spots on my face to biopsy, all three were cancers. Soon thereafter I had MOHS surgery on my nose and check.
Thanks to all of these spots and surgeries, I diligently check my skin for new growths all the time and take immediate action on any spots I believe are problematic. My wardrobe is also roughly 75% UPF 50+ from Coolibar. I wear long sleeve tops that also protect the tops of my hands and leggings, long pants or long skirts everywhere along with hats and face make-up with sunscreen. To me, it’s the same as getting the Covid-19 vaccine to make me feel more protected. Wearing Coolibar gives me confidence knowing my skin is better protected. Be proactive, not inactive.
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 name is Missy Rand. I’ve never had skin cancer, but I’ve lived through it. My husband Wayne Conners was diagnosed with Stage III Melanoma on March 20, 2015. At the time, we had been married for five years. We had four children launched into their adult lives and had moved to the DC area for an adventure. We formed a band with Wayne’s best friend and first bandmate from high school, Miss Clairol & The Cocktail Weenies, performing in Virginia/DC/Maryland. Life together was full of music, purposeful, and fun.
When he was diagnosed with melanoma, I knew our life was going to change, but our partnership didn’t. We faced each day with a united front and lived with the cancer together. We always said to each other: I am for you. I am for us. When someone you’re living with is diagnosed with melanoma, your behavior has to change. I wasn’t going to make two different meals or schedule two different vacations. We were living our lives together, so we both made adjustments together.
One of the biggest ironies of our situation was that I grew up as a water baby and had much more sun exposure over my lifetime than Wayne did, but he got melanoma. Neither of us had ever worried about the sun or our exposure, but the minute he was diagnosed, Wayne began to fear it. For me, if I don’t feel the sand between my toes, I become very crabby. We needed to find ways to get me to the beach and keep him safe. We bought more clothing to try to cover him up on our beach trips, hikes, bike rides, and mountain vacations. We did our research and were able to find the right kind of UV protection to keep us outside. The Melanoma Research Foundation (MRF) even connected us with Coolibar to get hats and clothing to try.
I was there for all the doctor visits, including when he underwent surgery to remove the initial cancerous mole on his scalp, before proceeding to infusions of immunological treatments, further surgery to target a recurrence in his thigh, and a 3-week hospitalization for a clinical trial using TIL (tumor infiltrating lymphocytes). Through all of this, Wayne and I became immersed in the melanoma research and treatment fields, navigating insurance forms and expanding our knowledge base for labs and scans, even appreciating when the outcomes were normal, abnormal, and in need of immediate action.
One of the hardest parts was the watching and waiting. Wayne had regular oncology and dermatology appointments which included routine skin checks for any abnormal spots. I even scheduled monthly mutual skin checks into my Outlook calendar to make sure we never missed self-monitoring. As many people can relate, this phase can cause major ‘scan-xiety’. Before each appointment, we’d feel tension build about what we couldn’t see except via high tech scans and bloodwork labs. After some appointments, we would also have to wait for additional biopsy results. It was very stressful. Making music together helped manage the stress.
We needed people around us to help cope with the constantly changing experience of living with this cancer. Early in our journey, we discovered the Melanoma Research Foundation webpage and there we found a good blend of evidence-based information and treatment advocacy, but it was hard to locate a melanoma specific peer support group in Virginia. As Wayne was successfully progressing in treatment, we sought an opportunity to contribute to the melanoma community. The MRF opened a training curriculum to help seed new support groups around the US. Following the training, we founded a monthly support group for those living with melanoma and their care partners —Living with Melanoma Alexandria. We needed a ‘safe place to land’ and talk about the rollercoaster experience of living with this cancer, good news and bad. The group has continued to meet this need, going virtual since the Covid pandemic.
In 2018, I joined the MRF’s #GetNaked campaign. Part of my partnership with Wayne had been to do whatever was in our power to support, advocate, and impact the outcomes for persons diagnosed with melanoma. Others went before him in clinical trials which gave him, and members of our support group, the chance to slow the progress of melanoma in all forms, and a chance to hear our favorite four words: No Evidence of Disease. Because of Wayne’s diagnosis, we know our children and his siblings are at increased risk to develop melanoma in their lifetime. Getting naked so all your skin is visible for self and dermatologist-assisted assessments is essential to prevent melanoma and allow early detection for the best outcomes. It was easy for me to be brave and #GetNaked for this MRF campaign. When Wayne was in New York City on business trip, he got to see me—his wife—in all my #GetNaked glory up in Times Square.
Wayne lived fully with melanoma that metastasized until December 30, 2019. Our family and friends continue to in the celebratory moments and the quiet daily connections where his absence catches our hearts. He was a cat-loving introvert at heart with an infectious smile. He had an expansive love for all kinds of music, he was a bridge-builder in his professional life working in mostly non-profit environments, a tender-hearted father, brother and son, and the love of my life. Even in difficult situations, he knew how to play to relieve tension. When his mom was in the hospital following a hip fracture, Wayne and his siblings took to dancing on rolling chairs in full surgical gowns, gloves and masks while waiting for surgery to end.
I continue to facilitate an online community for melanoma caregivers at HealthUnlocked and work closely with the MRF and other organizations to keep advocating for prevention and early detection. I value the importance of being a part of a community, whether you’re a patient or a caregiver. We need each other.
There have been times in my life where being a human is hard. But there are also many times when grace, large and small, covers and surrounds me making the unbearable tolerable. That grace comes in the form of family and friends. I’m grateful for everyone who has manifested this grace when I’ve needed it most.
It’s brave to live with melanoma. It’s brave to be a caregiver. It’s brave to love and be loved. It’s brave to be brave together.