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.
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.
Growing up, I loved to be in the sun and rarely wore sunscreen. And I definitely didn’t know anything about sun-protective clothing – what was that? Then, like many young women idealizing tan skin, from the age of 16-24, I definitely visited the tanning booth way too often. I’m now 36 years old and I fully regret all of those decisions.
My warrior story started pretty recently – in August 2019. I had never been to a dermatologist for a full body skin check. My skin looked fine to me. I didn’t have any abnormal growing moles so, as far as I could tell, I was good to go.
I finally went to the dermatologist for two reasons 1. we had put a pool in our backyard and I was out in the sun even more and 2. I had a friend start working with a dermatologist who advised me to go. I am so thankful I went. The dermatologist walked in the exam room, we talked about my medical history and she asked if I had any concerning spots, which I did not. She checked me over, then asked me how long I had had a little brown spot on my leg near my knee. It was new, but it wasn’t raised or shaped abnormally. I had gotten lots of new spots on my body over the years, so I wasn’t alarmed.
After doing the full-body exam, she decided to take off the spot on my leg. Then the following Monday I received a call from the dermatologist. I had always assumed I would never get skin cancer. But here I was, on the phone listening to someone tell me I had Stage 1A melanoma. I had to ask her, “wait, is that cancer?”. It was a life-changing conversation that I never saw coming.
Thankfully, I did not need chemotherapy or radiation. My diagnosis only required a wide local excision, however, recovery from that procedure wasn’t so quick and easy. Soon after surgery, my incision opened up after an accidental kick to the knee from my toddler. It took 3.5 long, painful months to heal.
The next summer, in 2020, I knew so much more about sun safety and I was ready to be outdoors. I got serious about wearing sunscreen, started wearing UPF 50+ sun protective clothing and wide-brimmed hats. There was no way I was going to miss out on pool time with my family. One of the blessings of getting melanoma is that I now know enough to protect everyone around me. If you’re in our pool, you’re sun-safe.
After years of avoiding sunscreen, going to tanning beds, and assuming I was safe, I now go to the dermatologist every 3-5 months for skin checks. Thankfully, I haven’t had another diagnosis since.
I really hope that people young and old will learn from my mistakes. Especially young women who are going to tanning beds. Please care for your health and your skin by wearing sunscreen on exposed skin every day and cover up with UPF 50+ clothing and wide-brimmed hats when you’re out for a long period of time. Also, AVOID TANNING BEDS! Trust me, you’re beautiful as you are and will be grateful you skipped the salon later in life. And if you haven’t gone yet, or are hesitating, please just go to the dermatologist. Nobody is immune.
I found my melanoma through self-checks, but not the way you’d think. For a long time, I would notice a brown spot on my lower right leg every time I shaved my legs. Unless I was actually focusing on my leg, I never noticed it and it didn’t bother me, so it wasn’t a big deal.
I never would have dreamt that the spot was Melanoma. But I knew it wasn’t totally normal, so I had made appointments to get it removed. But, because everything else in my life was more important, I kept canceling them. Sound familiar to anyone?
I finally stopped canceling in 2007. It was January and I had been having night sweats and felt very fatigued. It inspired me to finally keep my appointment and the mole was finally removed. I moved on and never gave it another thought – until a few days later.
I was at work rushing to a meeting when I realized I’d forgotten a file I needed at my desk. I ran back to my office where my phone was ringing. It was an unknown number. I decided to answer it in the off chance they were canceling my meeting. As luck would have it, it was my Doctor telling me to come into her office. I realized this was probably bad news, but I still found myself telling her that I couldn’t just drop everything and leave work. Reluctantly, she told me I had melanoma and she wasn’t sure what stage (or how bad) it was. She was sending me to a surgeon, a dermatologist and an oncologist. At this point, I really hoped that the meeting was canceled.
The surgeon I went to recommended a sentinel node biopsy to find out what stage my melanoma was. I had the biopsy on February 2nd, my 50th birthday. Ironically, a mole was found in one of my groin nodes, but it was completely benign. I was Stage One and I felt blessed. I made it through that scare and moved on to routine skin checks that I DIDN’T miss or reschedule.
Then, during a routine scan in 2011 my dermatologist found another suspicious spot. More melanoma. Same cell type. Stage One but I was told there were free floating cells – a nest of cells that were not condensed enough to be a big concern – and my immune system should take care of them. My dermatologist advised me to watch for any hard lumps behind my knee or in my groin and report them right away. I also had to get checked every three months.
One of the biggest things I took away was advice from my oncologist. They told me that our bodies let us know when something is wrong, much more than we realize. We just need to learn to pay attention. In my case, my night sweats were telling me something and I needed to pay attention.
My diagnosis has changed the way I view life. I do become somewhat afraid when I have a strange new symptom or spot, but I try not to let it consume me. I feel so very fortunate. With the use of sunscreen, shade, and sun-protective clothing I no longer hide from the sun. I am an extremely active person, so being able to get outside to run, walk, hike, paddleboard, golf or garden, is really important to me. I couldn’t imagine not being able to do those things or fearing for my health. Since my diagnosis, I always have SPF sunscreen and UPF clothing on. I even went to sunny Jamaica and added a great big sun hat to my wardrobe to stay safe.
My advice to you: Never put off taking care of yourself. Early detection saves lives, especially with melanoma. The earlier you find the cancer the better your result will be. So check your skin, go to the dermatologist, and get outside and be sun safe!
For as long as I can remember, my mom has checked my skin for new or changed spots, even into adulthood she still will look at my arms or neck and check for changes. She found my very first ‘spot’ in a dressing room while I was trying on new school clothes for my 3rd grade year. It was a dark black mole on my shoulder that had suddenly popped up overnight it seemed. The doctor removed it months later. Thankfully, it was only an atypical mole with no sign of cancer.
In 2003, when my mother mentioned that she did not like a mole I had on my jaw/neck area, I brushed it off with, “it’s fine, mom. No, mom, it hasn’t changed”. At the time, I was a 31-year-old mother with an 18-month-old toddler and an elementary school-aged son. My husband was in the military and we had just moved to a new town, so I did not have time to go to the doctor and investigate a mole that was probably nothing.
Then, I found the photograph that changed everything. I was looking through a box of old photos and came across an image of me laughing with my head cocked back to the side. It wasn’t a great photo but for some reason it caught my attention. I looked at the side of my face and neck. There was no mole. I flipped the photo over and looked for the date. It taken was about 2 years prior. It seemed strange that the mole had grown so large in such a short amount of time. Perhaps my mom was right to be concerned.
I made an appointment with my doctor who sent me to a dermatologist to have it removed. I remember when he called to give me the results. I thought it was odd that he was calling me. No one ever called with results. Everything was always fine. He used the word melanoma and began talking about a referral to a MOHS office for another surgery. I recall telling my parents and my husband that it was no big deal. I had my second surgery and clean margins, then I’d have skin checks every 3 months for a year, followed by every 6 months for a year. I could do that. No big deal. It’s fine. Everything is fine.
I really believed that. I really thought it was all fine. And then—I saw the Grey’s Anatomy episode about Izzy being diagnosed with melanoma and a metastasis. Wait…this can kill me? An older woman at my church had a spot on her foot that wasn’t healing. She had surgery, it was melanoma that had metastasized and she died six months later. My dad was diagnosed with melanoma a year after me and had to have a lymph node removed. I was learning that everything was definitely NOT fine. This was and is a big deal.
This realization absolutely changed things for me. Like my mother, my drive to protect my children from skin cancer became much more important. We already knew that sunscreen was an important part of going outside, but now it was vital. I also started being aware of what time of day we should avoid being outside. We lived near the beach, so I became an early morning or evening beachgoer and always used an umbrella. When watching my kids play sports, I found shade or made my own. As my children grew, they knew that a sunburn was something they had to avoid. I expected them to take sun safety seriously. After all, their grandpa and their mom both had melanoma.
Most recently I’ve learned a lot more about sun-protective clothing through Polka Dot Mama and Coolibar. Anything I can add to my family’s routine to help keep them safe really helps me feel like they’re safe out in the sun.
What I want everyone else to learn from my story is to take it seriously! Never think that skin cancer is ‘no big deal’. Be diligent about your skin and listen to your friends, family, or even a stranger in the coffee line if they think something doesn’t look right. In my case my mother was always looking out for me and she hounded my dad about the mole on his arm which ended up being melanoma. Her skin checks likely saved our lives.
My other advice is to take care of yourself. I was a busy mom and I made the excuse that I didn’t have time to take care of myself. This is SO common in mothers. But please remember that you are always worth the care you give yourself—especially when it comes to your health. Early detection really can save your life when it comes to melanoma. Since my initial diagnosis, I have met so many other melanoma survivors. The one survivor that has inspired me the most is my friend, Tracy Callahan, of the Polka Dot Mama Melanoma Foundation. Her story is so different from mine, yet we have so much in common. She has taught me more about melanoma than anyone—how to live a full life with the diagnosis and how to make a difference in the world because of it. Education and information are key components to helping people recognize the need for sun safety and how to take care of their skin. Tracy does an amazing job both educating and providing free skin screenings. She is a living embodiment of taking a challenging personal journey and using it to positively impact the lives of others.