Skin Diaries This is Brave

This is Brave: Darren Reilly

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

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Skin Diaries This is Brave

This is Brave: Missy Rand

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.

VIDEO: https://www.youtube.com/watch?v=E7-svhMpRbU

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.

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Skin Diaries This is Brave

This is Brave: Taylor Runkel

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.

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This is Brave

This is Brave: A Forever Home for the Warriors We Love

This is Brave is in its fourth year! In four years, we’ve raised over $100,000 for the Melanoma Research Foundation, and we’ve reached millions of people with messages about protection and prevention through social media. The secret of this campaign’s success is our warriors.

When Coolibar first started designing UPF 50+ clothing, we were inspired by family and friends who were battling skin cancer. We wanted to do more to help them stay sun-safe and get back outside. Since then, we’ve connected with hundreds of warriors living with all kinds of sun-related issues: melanoma, lupus, albinism, XP and more. We’ve met firefighters, kids with pediatric melanoma, Olympians, professional golfers, and women of all ages sharing their skin cancer stories in an effort to keep their loved ones sun safe.  

These warriors are…STRONG, BRAVE, AWARE, JOY, HOPE, THANKFUL, RESILIENT, GRATEFUL

…and we are truly HUMBLE.

Helping warriors share their story is an honor. It can take a lot of courage to put your experience ‘out there’, and we’re humbled by every story we get to help share.

We’re remembering two extremely courageous warriors that we lost in 2020–Susanne Milne and Eric Martin. Both fought incredible battles with Stage IV Melanoma, and they did it with hope, resilience and strength that most people will never get to see. Throughout their numerous treatments and surgeries, each did more than their part to support the melanoma community and we will be forever grateful.

As remarkable as this may sound, this is the first time we’ve lost warriors who have shared their stories with us. It’s helped us acknowledge just how incredible each of these stories are. Even though we’ve said goodbye to Susanne and Eric, we can still help them advocate and save lives. With their stories, we can continue the work of our friends indefinitely. It’s an incredible feeling.

Whether you’ve lost someone to skin cancer, or for any other reason, we’d like to celebrate each of them with you. We invite you to share what makes you smile at the memory of them in the comment section below, or through our Facebook or Instagram pages. The best way to honor the people that are gone is to keep telling their stories. We’re here for each other and we’re in this together. Let’s BE BRAVE. <3

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This is Brave

This is Brave: Showing Cancer Who is Tougher

Well, it’s been two years since my last Coolibar blog. So much has happened since then that I really don’t know where to begin. To refresh, my cancer journey started in May 2014. An ex-girlfriend found a suspicious spot under my right armpit and told me that I needed to get it checked. As many men typically do, I told her that I would take care of it in the fall. She said that was not an option and made an appointment for the next week. As it turns out, it was malignant melanoma. I will always be grateful to her for possibly saving my life. Since then I have been very vigilant about getting regular check-ups.

This is Brave: Catching up with Brian McKenna in 2019

This is Brave: Brian McKenna in 2018

Well, cancer came back in February 2017. I had five cancer surgeries in four weeks on my face. The fifth surgery—which was supposed to take four hours—was extremely rare and difficult and ended up taking nine hours! It required 300+ stitches, took a chunk out my right ear, left me with partial face palsy and a right eyelid that couldn’t blink. The doctors had to take a few tendons out of my right leg and rewire the nerves in my face. After radiation and physical/occupational therapy, the hope was that one day the nerves would re-trigger, the face palsy would go away, and I would be able to blink again. Thanks to the miracle workers—doctors, nurses, therapists and staff—at Barnes/Wash University/Siteman I’m doing about as well as can be under the circumstances.

After that surgery, I went through seven rounds of chemo pills and one week of putting chemo ‘hell ointment’ all over my body in 2019 and 2020. Though it has been rough, I have persevered because of consistent check-ups and my three most prized possessions in life:

My faith. My families. My friends.

What else do I need?  I’m so blessed to have the best family ever. They are my true currency. I have the greatest friends and a community that cares so much that they threw several fundraisers and a parade with 500 cars to help me pay my medical bills and other bills while I couldn’t work. I could never express enough appreciation and gratitude for the love, support, prayers and strength this community has shown me. They inspired me to get out of bed on mornings when I had nothing physically or emotionally in the tank. I didn’t want let them down. 

I initially shared my story publicly with the hope of inspiring others to keep on keeping on. Throughout my life, I have witnessed family and friends battling like warriors when facing cancer, depression, other illnesses or the loss of loved ones. They inspired me and gave me the perfect blueprint on how to not let adversity bully me. You lose 100% of the time when you don’t battle. 

I have had many people ask me how I remained so tough throughout all of this. As an Irishman, I have been in many scraps throughout my life but I don’t think that’s what they were referring to. I would always tell them that mental toughness is a lifestyle. You don’t need to talk or act tough. That’s actually a clear sign of insecurity. Authentic toughness is earned through your confidence, kindness, positivity and humbleness. It’s the ability to stay focused in the moment. Trust me, when getting ready for a cancer surgery or driving to another radiation appointment, or knowing you have another round of chemo ahead of you, mental toughness is so much more important than physical toughness. I’ve always been a believer in the motto “strength of body, power of mind”. Every scar tells a story.

Thank you Coolibar for the awesome UPF 50+ gear that allows me to protect myself outdoors while looking fashionable. I look forward to the next part of my journey and what lies ahead. I thank God every night for two things:

1. Making my reality bigger than all of my dreams.

2. Giving me one more day. ☮️❤️👊

Your Vibe Attracts Your Tribe!

#bebrave #family #bekind #stayhumble #getyourcheckups

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This is Brave

This is Brave: Baring my Scars to Save Lives

Original Blog: “Love the Skin You Were Given” June 26, 2019

Hi, it’s Amy Nichole here once again. The last time I shared my story with you was in June 2019. That was right after I had found out that my melanoma had returned not once, but twice! Since 2019, I’ve been seeing my oncologist every 3-6 months in addition to seeing my dermatologist every 3 months. Safe to say, I’ve had my share of appointments and tests since I last shared with you.  

Back in October 2019, my oncologist ran all kinds of tests including a full body PET Scan. With the melanoma coming back like it had, we needed to get a better picture of what we were facing. I also have family history of Breast, Melanoma, Cervical and Lung cancers so we tested for genetic cancer markers. I tested positive for two cancer markers which increases my risk for Breast, Ovarian, and Pancreatic Cancers. Following these tests, we knew what we might be up against, so I started getting proactive screenings for other cancers. More tests!

To add to the numerous battle wounds and scars, I already caried on my right arm and back, between Nov-Dec 2019 my dermatologist found more than 10 atypical spots, all of them ranging from questionable to severe and needing to be removed and tested. One of those spots had been considered ‘moderate’ in June 2018 and was left alone. It ended up growing back as Melanoma.

Since 2019, my outlook on life has changed significantly. I’ve become an advocate for skin cancer and do my best to educate others about protecting themselves from the sun. I’ve even started fundraising! In May 2019, I was able to raise $900 for skin cancer research, education and prevention. Between May and June 2020, I raised $1,000 with shirts I had designed to help increase awareness. Coolibar even helped provide the long-sleeved shirts for it!

I’ve also changed my habits. Since my initial diagnosis, I’ve gone from being carefree in tank tops and no hat, to wearing only UPF 50+ clothing. Coolibar has just about taken over my closet. I always wear sunscreen and have a hat and my Coolibar gloves on when I’m outside, no matter the weather. With the diagnosis and scares I have had, I know how important it is to keep yourself protected. I have even changed my diet, per my oncologist’s request, as a preventative measure. I’m pleased to say that all my test results were clear throughout 2020.

The downside of the past year was that my best friend Michelle, lost her battle with Pancreatic Cancer. She was initially diagnosed in May 2019 and passed away in on October 25th, 2020. She was with me in January of 2020 when I got the news that I was cancer-free for the first time since my first diagnosis. She never missed my appointments because she knew how much her support helped me through. She touched me deeply and I am forever changed. I’m so grateful to have been by her side in the last few days of her life. Seeing her go was one of the hardest things I’ve ever done,  but I’m glad I was by her side just like she had been for me. Rest in Peace Michelle! I love you forever and always my soul sister!

I’ve learned through all of this that beautiful things can come out of the darkest places. About a year before she passed in November 2019 Michelle received the news she was momentarily cancer free. We celebrated by doing a warrior portrait session. After she passed, her family looked to those photos for comfort as they celebrated her strength and resilience. They will forever be cherished by her family. She was a true warrior and will live on in the hearts of many people. Michelle inspired me to donate a warrior portrait session every year in her memory. It’s something I can keep giving to others to help them through when they need it. For that, I’m grateful.

Considering everything that I’ve been through, and continue to go through, I get asked for advice often. It tell people that it’s all about having a good plan with your team of doctors. Having everyone on the same page is so important. Being aware of your body is also extremely important. Ultimately, you are more likely to catch a sudden change, not your care givers. So, if you see something, say something! NEVER miss your skin checks and don’t be afraid to go in and ask your doctor to double-check something if it isn’t looking right. It is better to be safe than sorry as Melanoma or any form of cancer can come on suddenly and change quickly.

Most importantly, scars aren’t scary or anything we should hide. They’re a part of us. They help tell the story of how we’ve survived our battles. They’re what remind us of the pain we went through. Every new scar makes us stronger than the scar before it. They’re tough and courageous. They’re our war stories and our badges of strength. Be proud of your scars as some may not even be visible to the naked eye but are deep down inside of you. Don’t be ashamed and don’t be shy. Show your courage and strength along with your scars. Inspire someone. You may change someone’s life in more ways than one with your story as each battle is something so personal to learn from. 

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This is Brave

This is Brave: We Can Be Brave Together

Melanoma, what an ugly word. The first time I heard it, I was six.  I could barely say it. I wish the story ended there, but it was only the beginning.  Graham, my brother, was diagnosed in 2013 with stage III melanoma on his left arm.  When I was growing up I knew Graham was different because he had melanoma, but I never knew that he could die.

Usually when bad things happen in families, emotions take over. The emotion we all wanted to have was bravery but that is hard to do when you’re scared. But we were scared together, and that gave us strength.

I watched Graham go through lots of surgeries, and painful tests, and it was hard to think about what might happen if his melanoma came back. We had to be brave together. As I got older, I learned more about melanoma, and that this type of skin cancer can be deadly.  Graham’s cancer did not come from a bad sunburn or being out in the sun too much, his was genetic, but most are not like Graham’s.

Once, in 5th grade, I had to write a story about my hero, I picked Graham.  I did a quick google search about pediatric melanoma, and Graham’s story was the first thing that came up.  I remember sitting in the library crying.  It was at that very moment that I realized exactly what this all meant.  I took a big breath and thought to myself, I have to be brave for Graham.  I can’t do much to change his situation or find a cure, but I can be brave.

Advocacy is one way I can do something to try to help. I try to tell people to wear sunscreen and stop tanning.  I am in middle school, so it is hard to get people to listen but if someone in their family had melanoma they would understand the risk. I tell people about skin checks and changing moles. We raise money for research, we go to Washington DC to ask Congress for research funding, we teach sun safety and we share stories. The more I can share, the more I hope I will prevent someone from going through what he has. Graham is not only my brother, he is my friend. I cannot imagine life without him. I wish science would find a cure. Until that happens, I will continue to brave, because sometimes that is all you can do.

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This is Brave

This is Brave: Five Years Later, I am Stronger

For those of you who don’t know my story, my name is Karolina Jasko. I was diagnosed with acral melanoma in 2016 a few days before my eighteenth birthday. I was a senior in high school dealing with a melanoma diagnosis in the midst of getting ready for college and trying to get excited for senior prom and graduation. It was a scary thing!

My mom had melanoma twice, so I was familiar with the disease, but never in a million years did I think it could happen to me. Especially at such a young age. Luckily, I had a team of phenomenal doctors and a wonderful support system that helped me get through.

Read Karolina’s original story here.

Five years later, melanoma is still one of the deadliest cancers in the world. Five years later, being diagnosed with melanoma still impacts me every day. Five years later, I am stronger…

When I was first diagnosed with melanoma, my mental health fell apart a little bit. I took on a lot of the heavy, emotional feelings that my family and friends were sharing. I didn’t want them to see that I was upset and scared too. I wanted to be strong for my family and show them that everything would be okay. Everything did end up being okay; but holding in that fear during that time was hard.

An experience like this changes you. It changes your family. It changes your support system. You view things differently, you take precautions that maybe you normally wouldn’t have, and you react differently to certain things people say. You also learn to appreciate things more. When I say I’m stronger, I wholeheartedly mean that. Through my diagnosis and treatment, I learned to be stronger for my family, and stronger for me.

For all of this, I am so THANKFUL.

As Miss Illinois USA, I was able to use my title to talk through my experience. I could share the fear I felt, and the shame and insecurities I carried. But most importantly, I was able to help spread awareness and the importance of prevention.

Although I no longer hold the title, I continue to spread awareness and talk about prevention. I’m currently a full-time graduate student at Northwestern University, but I still find time to support the Melanoma Research Foundation and other organizations whenever I get the chance. Sharing our stories and supporting each other matters! Five years later, I continue to get skin checks and body scans with my wonderful dermatologist. I wear sunscreen and avoid UV Rays. Five years later I am stronger and I’m here to keep sharing my story and making sure others stay sun safe.

#GetNaked video: https://www.instagram.com/p/B_yLBVdhDfM/

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This is Brave

This is Brave: Bravely Raising Awareness Through a Pandemic

Hello, my name is Bethany Gambardella-Greenway. I was diagnosed with stage 3a melanoma in august of 2016. I have been supporting “This is Brave” since it first began.

In 2018, I introduced everyone to my journey. It was a big leap forward for me in terms of sharing my story and helping others: http://blog.coolibar.com/bethany-greenway.  

In 2019, I worked through the physical and emotional impact of my diagnosis and learned what I needed to do to stay strong and present for my daughters.

In 2020, I was invited to help introduce you to my amazing friend Patrick Guddal: http://blog.coolibar.com/this-is-brave-warrior-to-warrior/.

This year, in 2021, when Coolibar invited me to write again, I was somewhat stymied. I haven’t done anything! In the past year, I haven’t done any speaking, volunteering, or public fundraising. The activist part of my life was put on pause along with normal life thanks to the pandemic. 

Like a lot of others, the past year was extra challenging. In order to feel some level of normalcy and feel like I was making a difference, I started making masks for friends, family and a local business. All the time I would have spent the year before helping fundraise for melanoma research, I spent making masks.

Still, as an activist, I felt somewhat lost and without purpose. I know I wasn’t alone in this. I kept blogging and talking about my own skin cancer journey, with the added variable that COVID-19 brought into the mix. I put off my six-month skin check and seeing my oncologist. It was a very scary time for me and other cancer survivors.

Before the pandemic, my melanoma treatment has been immunotherapy, Yervoy, which really did a number on my immune system. It’s been more than a year since my last infusion and still when I get a cold or virus, I’m sick for double the time a normal person would be sick for. My immune system basically goes bonkers.

Knowing what we knew about COVID in the beginning, I was so fearful of what could happen if I got it. I am a single mother of two girls, Luciana (9) and Arabella (6). I was beside myself with fear. I’ve now gotten my vaccine; the fear has become less but it’s still present. I fear for my friends and family who haven’t gotten their shots yet, and I wonder what it will be like once we truly find our new normal as a society. Raising awareness in 2021 is definitely going to be different than in years past. At this point who knows what’s going to happen. However, what I am hopeful for is people coming together for the greater good and all those things everyone had to put off during 2020 finally come to fruition.

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Live Wisely

Mom Bloggers Educating Families About Sun Safety

Kelli Gillespie Richardson and I met when working in and around the media world. As our careers grew, so did our families.  Picture two career women literally wearing their babies to press junkets and TV stations, and frantically changing diapers before jumping on air. It sounds crazy, but we made it work!  Our friends suggested we share our crazy experiences with others so we took their advice and created Family Entourage—a place to celebrate and support growing families. We continue to juggle our careers, families and our growing blog network from sunny San Diego, which brings us to our need for sun protection…

Living in San Diego, we are outside year-round. We always prepare for sun exposure when we’re at the pool or beach, but the reality is that we are exposed as soon as we step outside the house. The easy solution…sunscreen! But picture this…every time you step out of your front door the sun is blazing and you need to cover your toddler or young kiddo in sunscreen. Whether you’re at the San Diego Zoo or La Jolla Beach, we have to chase down our kiddos every 1-2 hours and slather them down. This resulted in a lot of stress, sunscreen in the eyes, sand and mud sticking to our kiddos, sometimes for days. We needed a better solution for our kids, our readers and our sanity!

Kelli and I were first introduced to Coolibar when researching a TV segment on Pool Party Ideas. The amount of information available on water safety and teaching kids to swim was huge. But what we also discovered in our research was that one in five Americans will develop skin cancer in the course of a lifetime. We were blown away! This revelation really opened our eyes to the need for sun protection, and how best to use/wear it.

After that initial Pool Party Ideas segment where we tried out Coolibar, our families have been wearing it everywhere. We also make sure we’re ‘modeling’ it during any and all TV segments where we can recommend sun-protective clothing. It’s our way of using our voice to help local parents tackle sun safety. If our blog helps keep families sun-safe and cancer-free, we’ll keep spreading the word. Education and awareness is everything and we don’t want any families to be a part of the ‘1 in 5’ statistic.

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