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Skin Diaries This is Brave

This is Brave: Ariel Ginsburg

Skin cancer is something that runs in my family. My grandfather has had basal cell removed and is constantly having biopsies on his face. My mom has had Mohs surgery on her forehead and had melanoma on her left calf as well. Growing up, my mother always warned everyone to stay out of the sun, but I was always about tanning. When I reached my early 20’s, I pulled back from the bronzing and started to take better care of myself. In all honesty, I did it to preserve my youth.

            This past summer when I was 30, I went on a trip with a big group of friends to a camp in Wisconsin. The first two products that went in my bag were SPF 50 and bug spray. I was the most careful one on the trip—constantly reapplying both products—but of course, I returned home covered in bites on my legs. 43 bites to be exact. 43 bites that itched so badly I couldn’t sleep. Two weeks later they were still there, mostly concentrated in one area of my left calf.

I was getting ready for my cousin’s wedding, carefully applying my anti-itch cream, when I noticed a spot in the middle of all the bites. It was a freckle the size of the tip of a permanent market. It looked strange. Sort of scabbed. I was pretty sure it was always there, but it had never looked like this. I sent a photo to the doctor who does all of my facials. She said the scabbing could be from scratching the area and to apply Vaseline daily until I could come in to get it checked. When I realized that it was the same spot on the same leg where my mom had melanoma removed, my gut told me it was cancer.

            After returning to Chicago, I went into the office to have the doctor look at my leg and was sent directly to Northwestern Skin Cancer Institute. I was nervous. At 31 years old, I admittedly had never had a full-body scan before. I was always careful, so I didn’t think I needed to. Two biopsies and seven days later, I received the news that the funky freckle was indeed melanoma. I tried not to cry but I was terrified. I also felt fortunate. I had found my spot extremely early and with an excision, I would fine.

            I called my mom and said “what are the odds” that I had melanoma in the same spot, same leg. It turns out the lower calf is actually an extremely common spot. It’s right where those slightly cropped workout pants end. A place often missed. A place I never thought to apply SPF when I was out and about!

            The day of my excision was nerve racking. My new doctor explained the procedure. I couldn’t believe that this freckle, that was maybe a 1/4 of an inch, required a cut that was about 4.5 inches long, an inch wide and deep enough to cut to the muscle!

            Physically, it was a difficult healing process. The excision was just below my calf, which meant it was pulled every time I took a step. There was a lot of swelling, but elevating was hard because it hurt to even rest it on a pillow. And I wasn’t healing well. Mentally, it was difficult as well. I couldn’t really exercise which is a big part of my mental health. Then there was the fear. Fear of being outside and exposed to the sun. I felt so fortunate to have caught this early, but the pain made me terrified of finding more spots on my body.

            Throughout the process, I decided to share parts of the experience through social media. I was nervous at first, but the feedback and comments I began receiving were so up lifting. People began to share their stories with me, and I realized I wasn’t alone. But the best part was the amount of messages I received from people—friends, acquaintances, strangers—thanking me for sharing and telling me they just booked a full body scan because of my story.

            I am now six months out of my excision and my mindset has completely changed. I realized I cannot live operating from a place of fear of melanoma. I have to live my life and take the necessary precautions. I am much kinder on my body, placing less stress on looks and weight. Instead, I am grateful for my health. I have also changed my ideas on what “influencing” means to me. My goal is to spread knowledge and awareness about melanoma and help people stay uplifted and informed. If sharing my story inspires others to book an appointment that could save their lives, then I know I am doing something right.

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This is Brave

This is Brave: Warrior to Warrior

Our warriors are many things…grateful, connected, thankful, determined, enlightened, educated, strong…BRAVE. They are part of a greater community of amazing individuals faced with the massive hurdle that is cancer. Through reading all their stories, they’ve proven that one thing is absolutely certain…we’re stronger together.

In that spirit, past and present warriors have shared personal messages to each other. Some are related, some have never met each other, but they’re all connected by a shared journey and determination to BE BRAVE.

To every skin cancer warrior and survivor.

By: Holly Rowe

What a unique and challenging time we are dealing with right now. The good news is…while many of us are self-isolating at home, we are less impacted by the sun! But I know when we are able to return to some sense of normal life, many of us will rush to participate in outdoor activities. By nature we are all sun worshippers, it has been a very difficult transition in my life to realize that the sun can hurt me. But thanks to protective clothing and great companies like Coolibar, when we do finally get to bask in the sun, we can do it responsibly and with great protection.

For all the nearly diagnosed, stay strong and try not to let the worry of what is happening in our world coupled with your new diagnosis be overwhelming. There are many improved treatment options that can help you and positivity is key in overcoming this new challenge. Just know you have an army of fighters, survivors out here rooting for you, supporting you and here to listen. Together we can accomplish anything!

To my husband Steve. Love, Marilee.

Steve Hamilton is my husband and one of the strongest people I know. Since the day of his melanoma diagnosis in 2006, he has handled this unexpected journey with grace, strength, positivity and determination. I don’t recall a day where he appeared defeated – and there were many days he easily could have been. He willed himself to beat this beast and did so with a positive attitude that I am still in awe of. I know in my heart of hearts that in addition to the phenomenal medical care he received and the support from family and friends, his positive attitude was a critical part of his survival. There were times when HE was the one actually keeping ME – his caregiver – upbeat. Please read his story and if you or a loved one is battling a melanoma or any serious disease, please do everything that you can to be determined to stay positive. There is hope.

To my Melanoma brother Pat. Thank you for being on this journey with me. Love, Bethany

By: Bethany Greenway

I have a brother, not in the literal sense or by blood, his name is Patrick Guddal. Patrick and I have been walking a nearly identical path for nearly four years now. Patrick and I were both diagnosed with stage III melanoma in the summer of 2016. When I finally met Patrick at a skin cancer event here in Austin, TX I felt an immediate kinship. For cancer patients, it’s hard to find someone who truly understands what you have been through and how it changes you. Patrick “gets it”. He understands the trials and tribulations that a cancer diagnosis brings with it. During his fight Patrick chose to become a melanoma advocate and educator. He has spoken at multiple events sharing his story and the importance of early detection. His strength and self-awareness became a pillar to support his newfound mission to educate others about skin cancer and how dangerous it can be. I am inspired by his openness, perseverance, and willingness to share his story to help others. I hope you are too

To my friend in advocacy Robyn. Your unbeatable positivity is incredible, Susanne.

By: Susanne Milne

I met Robyn for the first time at the yearly MRF Hill Day in Washington D.C. and was immediately impressed with her positive spirit, her great strength though her melanoma journey and most of all her natural involvement in advocacy. Robyn’s own melanoma story, as well as her brother’s, speaks to the heartache of the illness but also of the amazing stories of recovery and how to find new purpose in life during and after a cancer diagnosis. Robyn is involved in advocacy in several ways; with children, with adults, in the workplace and all efforts are both locally, in her neighborhood, and on a state level with the MRF. Clearly, advocacy has become a calling for Robyn, which is truly to the benefit of the melanoma community as she clearly excels at bringing awareness and education about melanoma. Robyn has an inner strength that has allowed her to stay positive and strong throughout her journey. This shows in her great smile, unbeatable positivity, and her direct and friendly interactions with anyone she approaches regarding the melanoma cause. I look forward to all of you to read Robyn’s amazing story, to follow her on social media and to meet up soon in our Be Brave Coolibar shirts.

To my friend and mentor, Doug. Thank you for your leadership, Cheryl.

By: Cheryl Stratos

When the going gets tough Doug Brodman steps up to lead the charge. I met Doug when he was elected to the Board of the Melanoma Research Foundation and it was there, we connected as fellow Stage IV survivors. Our stories were similar as we both had received Christmas-time diagnosis that set our worlds on fire and landed us in clinical trials that would not only change our lives forever but ignite a quest to help find a cure for melanoma.  Doug has brought a great energy to the MRF by incorporating his mad business skills to energize the group. He has worked to initiate new strategies to grow the MRF that will ultimately fund more clinical research and help advocate for patients looking for resources to survive. Melanoma is the most competitive race you’ll ever run, and Doug understands how to help win the marathon. I am honored to know Doug and to call him a friend and mentor.

To my incredible daughter Marit. We are so proud of you! Love, mom.

Some friends lament that Marit pulls out her ‘cancer card’ a lot. And, I say, thank goodness she does! Her commitment to the fight against melanoma has been her living legacy, and at the young age of 15 no less. As she has grown up, so too has her message and purpose. It’s been a journey from promoting awareness that pediatric melanoma actually exists, to imploring politicians to fund critical melanoma research, to most recently serving as the self-appointed ‘sunscreen queen’ among her friends at her all-girl high school; these friends now diligently practice sun safety for fear of Marit guilting them. I’m beyond proud to be her mom and hope she continues to play that ‘card’ to the benefit of us all.

To Jess, the Ocular Melanoma sister I’ve never met. Your gratitude is inspiring. Thank you for your story!

By: Lindsay Zubeck

Like Jess, all I wanted was an all-American life full of adventure and happiness. I never imagined ‘full of adventure’ meant adding in the ‘cancer adventure’, but it did. I also, would not wish this adventure on anyone, but it has made me a better person. The journey, the whole journey – the highs and lows, the peaks and valleys, the moments I couldn’t stop crying in fear to the moments when the good in so many people made my heart feel more gratitude than ever.  My life before cancer, during treatments and now living with cancer – the ‘cancer adventure’ has been the best one yet and that shines so clear in Jess’s writings too.

Initial treatment of ocular melanoma does not involve chemo, we don’t lose our hair or look like we are battling the biggest journey of our life like others – but internally we may be a mess, many of us lose our sight or our natural eye and for months if not forever we walk around wearing a patch and/or a prosthetic  eye. That is when we can’t hide our cancer. The patch is a forever accessory for Jess or for me I pray I don’t accidently touch my prosthetic the wrong way and it flips upside down in public or pops out! 😊

After my initial treatment, I never wanted to look in the mirror – I didn’t know who I was – I could only see tumor filled eye looking back at me. But then a year and a half later my tumor began to grow back, and my next treatment plan was enucleation. I didn’t know what to expect when I awoke and removed my eye dressing but when I did, I finally found peace. Jess – I loved that you shared you expected to see someone foreign, but you saw your bright familiar face, your smile, your on-point eye-brows and you saw you again. After enucleation – I too saw myself again – even my on-point eye-brows. Just one eye not two.

When you read someone’s writings and you laugh, you cry, and you feel like the same words could come from your mouth you know they have felt and traveled on your journey before and with you even if your physical paths have never crossed. Jess – your words are truthful and honest, they are brave, courageous – your gratefulness is inspirational. Living with cancer and one eyeless in your 20s, I in my 30s is not fair but I admire you for finding the best and not missing out on anything and everything life has to offer. The only choice you believed you had was whether you’d let this break you. You choose to find ways to embrace your journey the whole journey and I am honored to share our stories together. Life is too good to not enjoy the ride and thank you for taking us on your ride. Be brave my friend, my OM sister! Let’s celebrate #BeBrave #BeGrateful #BeYou together. #youcantakeoursightbutnotourvision

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This is Brave

This is Brave: “I’ll Beat This Again”

By: Julie Weber Smith

So many awesome things have happened since I told my story!

At the end of June 2019, I started working part-time at Warren Chiropractic Center. I work at the front desk and love seeing the improvements of the patients as they get their adjustments. The first day I worked there, I was driving into work and just started crying. I didn’t know if I would ever be working again! As much as we get upset with our jobs for so many reasons, I have thanked God for this job and the owners of this place for giving me a chance. Being employed is just another thing we can take for granted in our lives.

On October 28th, I went in to see my Oncologist to get results from a recent scan. They said a word I wasn’t sure I would ever hear…REMISSION!!! I will never forget the look that my husband and I gave each other. LOL! It was complete shock and happiness. I do need to continue taking target medicine Mekinist and Tafinlar that are designed to shrink and kill cancer cells until my next scan in April. But for now, I’m in remission!!! I get my skin checked every six months by my dermatologist and the most recent check showed that everything is fine. Nothing needed to be removed. Yay!

My energy and strength are getting better and I have been advocating for those fighting cancer. I am highly involved with the American Cancer Society Relay For Life in my community. I mentor and recruit teams as a team coach on our ELT Committee (Event Leadership Team). In the nine years I’ve been working with Relay for Life, I have raised thousands of dollars for cancer research and treatments, rides for patients, Hope Lodges (places to stay for cancer patients and their families while getting their treatments), and have been working on the 24/7 support call line. What I enjoy most is helping these people and their loved ones fight this cancer. Letting them know there is help, and that they are not alone makes such a difference in their battle.

Just recently, an American Cancer Society employee nominated me to be honored at a Coaches vs Cancer event at the University of Notre Dame Men’s basketball game. Nick Djojo, John Mooney and TJ Gibbs surprised me at my work with VIP tickets to the game, along with a few other gifts. I went to the game thinking there would be other cancer survivors walking out with me to the middle of the court and it was just me! They honored me for my work with ACS and in the community. I couldn’t believe it! I received a signed basketball from all of the players and courtside seats. It was so cool and very humbling.

Since working with Coolibar to tell my story, I’ve been able to help even more people going through the same fight as me. I have been sharing what this amazing company and their clothing is doing for everyone in protecting us from the sun, and that they are raising money to make sure that there are treatments and research for Melanoma. I’m grateful to be partnering with them.

I’ve been sharing my story with others since I was first diagnosed with Melanoma in 2013. I want to give some hope to as many people and their families as I can.

March 20, 2020: Taken from a live video feed to friends and family…

I’ve got some news to tell you. I’ve been having some pain on the right side where the cancer was, and I went in and told Dr. Ansari. I talked to Dr. Ansari. I had a CT Scan and I am no longer in remission. I found out yesterday that I have two masses. The mass on the right side is 10.1cm x 6cm. the one on the left is 4.8cm x 4.2cm. Both have fluid in them.

The plan right now is that on Tuesday I’ll go in for a biopsy and they will take the fluid out of the tumors and hopefully, that will relieve some of the pain that I’m having right now. Then on Thursday, I am going to Indianapolis to talk with a surgeon to see if they can operate. If operable, that will be awesome! I go for an MRI on April 2nd and then April 3rd I meet with Dr. Ansari again and we’ll discuss what needs to happen. The treatment we’ve been talking about is immunotherapy again, continuing the target medicine I’m on now, and possibly radiation. It could be all three, or a combination. We’ll see what happens. I’ll know more after April 3rd. Things can change between now and then as we all know. Things happen every day, every hour.

I just want to let you all know that I’m praying for every single one of you. With the coronavirus, we’re all in this together and we’re all effected one way or another. I’ve been praying for you and your families. That’s it.

I don’t feel as stressed as I did the very first time. I feel kind of at ease. I’m still kind of numb to everything. But it will be okay. It will be alright. I’ll beat this again. The cancer bug says it wants to attack me again and I’m telling it, “Not today! You messed with the wrong gal!” We’ll beat this again and do what we can. We’ll get this all taken care of and everything is going to be okay. They say third time is a charm and I’m praying it is.

You know, how I look at it is this…I’m going to be free from this one way or another. I’ve said it before, it’s going to be here on Earth or in the hereafter, and when you think about it either one is not a bad thing. I’m scared and I’m upset. I’m angry because I was doing so good. But I kinda knew. I was doing so good and thought, “I want to keep going! I’m doing great!” so I didn’t say anything. I didn’t want to be the one calling my doctor all the time because of this or that and have it turn out to be nothing. Now it’s worse.

In the same token, I can’t beat myself up for this either. I will just go with what is going on right now. And right now, I’m going to beat this and kick it! Even if I might have to kick a little harder this time.

Anyhow, I hope you all are doing well! I love you all! Keep safe with your family and friends and love on your family! Just let them know that they are loved. I love you guys.

To read Julie’s story from last year’s campaign, visit HERE.

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This is Brave

This is Brave: Describing Your Entire Life with One Word

By: Cassie Beisel

I have been through many iterations of my personal definition of the word change – my favorite – acknowledging and accepting the past and what you’ve been through, but knowing, deep down, that it is the only way to move forward. The word “change” has defined my life since 2011 and at first, change meant inconvenience, fear, inconsistence, anxiety and loosing who I was and wanted to be to cancer.

To quickly catch you up, in 2011, my life changed. I was diagnosed with advanced melanoma. I didn’t find my cancer by noticing a changing mole, the only sign was a palpable lymph node in my armpit. Later, I would find out that, of my 30-something lymph nodes removed, three tested positive for melanoma.

Since my diagnosis, I have had the above mentioned full lymph node dissection, completed a very long and grueling year of Interferon, was diagnosed with Acute Lymphoblastic Leukemia, had a life-saving bone marrow transplant. On top of that, I had squamous cell carcinoma “where the sun doesn’t shine” resulting in three separate Moh’s surgeries.

My work as Advocacy Officer with the Melanoma Research Foundation (MRF) has given me a new definition of the word change. Now change means to overcome, to advocate, to make better, to rally and to stand up for others. It means working every day to try to leave this world a little bit better than I found it. As the list of cancers and survivorship issues continue to grow, so do I and so does the meaning of change.

The ability to change is in all of us and not only in the traditional sense. I know change can be hard, inconveniencing and many times unwelcoming, but even the smallest amount of “change” can make a world of difference in the lives around us.

I ask you to embrace change, whether it’s smiling at someone who seems to be having a bad day, giving yourself permission to feel upset at what life dealt you or sharing your experience, journey, story—whatever you want to label it—to give a piece of hope to someone who needs it. Change can and will happen with every gesture we make, no matter how big or small.

To see Cassie’s story from last year’s campaign, visit HERE.

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Live Wisely Wear to Where

When to Wear a Sun Hat

Some of the most common places to be diagnosed with skin cancer – face, scalp, and ears – are located on your head… So choosing to wear a hat, especially one that is UPF 50+, just makes sense. The bigger challenge is trying to figure out when it is most crucial to have one on your noggin.

Reading a Good Book on the Beach

Whether it’s the ocean or poolside, having your favorite read teamed up with a wide-brim hat is the duo you’ve been looking for. Spend more time getting into that New York Bestseller and less time worried about the sun.

Coolibar Choice:

Hitting Up the Country Club

Have a membership at the local country club? Hours of direct sunlight on the golf course or tennis courts adds up and can be detrimental to your skin health. With the reapplication of sunscreen and a good hat on your head, you should comfortably be able to play 18 holes unscathed by the sun.

Coolibar Choice:

Fishing on the Lake

Summer is all about going up to the cabin, taking the boat out and taking advantage of the good weather. For the big fishers out there that just love being on the water and lose track of time easily, a hat with extended coverage is vital because of the straight hours of direct sunlight and the UV rays reflecting off the water. 

Coolibar Choice:

Running Errands Around Town

It’s your day off and it has to be spent buying groceries, stopping by the bank, picking up the kids from school, going to the dentist’s office and countless other things on your agenda. With all that scheduled for your day, the accumulated UV rays add up quickly!

Pro tip: Keep a packable sun hat in your car or purse to always be ready for the sun.

Coolibar Choice:

Paired with the Perfect Outfit

A very underrated piece of an outfit that can really bring the whole look together is a well-styled hat. There may be no better time to have a perfectly selected wide-brim hat than for a Kentucky Derby party or event!

If you are struggling to find the right one, our team has designed a guide to help you find the perfect hat that works with your face shape.

Coolibar Choice:

Taking the Dog for a Walk

Our furry companions need their exercise too, it’s an important part of being a pet owner. With that being said, typically, you’re taking the dog out for a little stroll during the day while UV rays are present. It shouldn’t be a very time-intensive chore to get prepped for a walk! Simply apply a little SPF 30+ sunscreen and a hat… and voilà!

Coolibar Choice:

Enjoying the Great Outdoors

This one is for you adventure seekers that love camping in the woods and exploring nature! If you’re the weekend warrior that joins every hiking group they can, you need a great sun hat paired with some long sleeves.

Coolibar Choice:

Regardless of the activity, you’re doing and the style you choose, make sure to get in the habit of wearing sunscreen on your face with your hat to help lessen the chances of extreme sun exposure even when wearing a hat .

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Live Wisely

Can Dogs Get Skin Cancer?

ANSWER: Sadly, yes.

We were as disappointed as you are to find this out. In fact, the common forms we develop are what also affect them – melanoma, squamous cell carcinoma and basal cell carcinoma. Although most dog breeds are at risk, Jill Abraham, a board-certified veterinary dermatologist in New York City, told the Skin Cancer Foundation that the ones with “light-colored, short coats and less hair on the belly” are the most vulnerable. Before you start slathering sunscreen on your dog (Yes, you can put sunscreen on a dog), there are a few tips to help your furry companion live a safer life in the sun.

Limit Sun Exposure

Like us, dogs can get sunburned. Ever notice when a dog’s skin looks a little red after coming back inside? Sunburn. We all know how much they love laying out in the backyard sunbathing in the grass, but limiting the amount of time they have in direct sunlight during the strongest hours (between 10am and 4pm) is crucial. Helping encourage them to shady areas is a very good compromise to beating the sun.

Sunscreen

We weren’t kidding! Dogs 100% can wear sunscreen and it is actually strongly recommended by Richard Goldstein, DVM and chief medical officer of the Animal Medical Center in New York City.

A dog’s skin can be damaged by the sun just like our own, so they require the same protection against the development of sunburn and skin cancer.

Richard Goldstein, DVM and Chief Medical Officer of the Animal Medical Center (PetMD)

Here’s a video from Banfield Pet Hospital to cover the rest of the important basics to know about sunscreen and dogs:

Video created by Banfield Pet Hospital
Sun Protective Clothing

Hear us out on this one. For the pets with no escape from the sun, you could use some of your older UPF 50+ tops and wrap it around them or even see if it fits without too much struggle. It might sound a little ridiculous, but even Dr. Abraham thinks it’s a viable option. And to be honest, it is always cute to see a dog running around in a t-shirt.

When it comes to our loyal buddies, keeping them safe is a no brainer! One of the biggest final tips on dog skincare is just building up the consciousness of knowing when your dog is receiving too much sun. Now get out there, grab a Frisbee and enjoy a sun-safe life with your loving, furry best friend.

Resources:

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Skin Diaries

Julie Smith: “I may have Stage IV Melanoma, but it doesn’t have me.”

I was first diagnosed with melanoma on April 11th, 2013. I had a mole on my right shoulder blade that itched and would bleed. My family physician removed the mole, then called to let me know it was melanoma. A surgeon removed the rest of it and I was labeled “cancer-free”. At the time, I was grateful that I didn’t need to remove any lymph nodes or get a CT scan, I simply needed to visit my dermatologist every six months. I felt relief and followed the doctor’s recommendation.  

Then, in December 2017, I was experiencing pain around my stomach and had a hard time breathing. I thought I had pulled a muscle in my back. I visited a chiropractor, but I was still in pain. In March 2018, I contacted my family physician who checked me out and requested a CT Scan. He was initially checking to see if I had a blood clot in my lung, but instead, the results showed a 15cm mass on my right adrenal gland. It was pushing up against my lungs and making it hard for me to breathe.

At this point, my husband and I paused, looked back to my experience in 2013 and completely reconsidered my cancer-free diagnosis. Five years later, after meeting additional oncologists and medical professionals, we knew more and questioned everything that had happened in 2013. Had we been given the opportunity to go back to 2013, we would have taken every additional precautionary test or scan to make sure that the cancer-free diagnosis was accurate. While we had enjoyed five years with a false sense of safety, my cancer had metastasized.

That April, an oncologist biopsied the growth to see what it was and what we’d need to do next. Before the biopsy even happened, I knew I had cancer.  My faith in God has always been very important to me and I’d had a vision where God told me what my diagnosis would be and that I was going to share my story. I could see myself sitting in a room getting chemotherapy while sharing stories with other patients. God was preparing me for my upcoming journey.

I visited my neighbor down the street who was a pastor and asked him to pray with me. He asked me, “If this is cancer, what is your prayer?” I told him that I wanted to pray for the strength and the ability to help others with my story, and vice versa. I wanted to be able to make sure all of us are never alone while we go through this.

On April 9th, my husband and I saw my Oncologist and he gave us the news. He told us that I had Stage IV Melanoma that had metastasized and landed on my right adrenal gland, but it was curable and treatable. Just over a week later, I had surgery to remove the mass. I was cut from the bottom of my sternum to just past my belly button. They didn’t get all the cancer out, so I started immunotherapy and Opdivo and Yervoy at the beginning of May. I ended up in the hospital from mid-July to the beginning of August because the side effects made me severely sick. But, a PET Scan on August 6th showed that the mass that started at 15cm had been reduced by almost 6cm! We were making progress. The side effects continued to the point where I ended up having a hysterectomy in September.

A PET Scan in November showed that the mass, which had reached 6.2cm had stopped shrinking. They put me on oral target medicines called Mekinist and Tafinlar that I take daily. I’m truly blessed to be able to take this as it only works on someone with the BRAF gene. If I didn’t have that gene, I would not be sharing my story right now. By February 2019 the mass had shrunk to 4.5cm and I was officially in “partial remission”. My scan in May 2019 showed a reduction to 2.2 cm. By August of this same year, I received news that it had reduced another 24%! 

Already this year, I have been stronger and doing a lot more. I had previously lost my job because of the cancer, but I’m happy to report that I was able to go back to work in July 2019. I am working part-time and getting stronger day by day.

I have been asked numerous times what keeps me going and how I keep a smile on my face. The answer to that question is this…

Faith. Family. Friends.

We are all put on this earth for a purpose. My story helped me do something dear to my heart… glorify God by helping others along their journey. Without the support of my family and friends and knowing that God is with me always, I don’t know where I would be right now. There have been times when I’ve been so depressed that I’ve told God he could take me anytime. I didn’t want to go through anymore. But He has bigger and brighter plans for me. He’s not done with me and I’m not done fighting.

Every day, I’m amazed at how far I have come. Today, I am working, able to get outside and enjoy some of the many wonderful things God has created and enjoying time with family and friends, which absolutely means the most to me.

I may have stage IV melanoma, but it doesn’t have me.

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Skin Diaries

Couple Faced with the Hardest Decision of Their Lives

Staci’s journey started back in August 2018 when she had a large mole removed from her leg. It came back positive for Melanoma. By September, we’d learned that she had a particularly aggressive type of Melanoma and her diagnosis was Stage IIC. She had the tissue around her mole removed leaving her with a hole in her leg the size of a hockey puck. They also took a lymph node from her groin to see if the cancer had spread. It had.

More melanoma moved her diagnosis to Stage IIIC. In October—two months after her initial diagnosis—the rest of her lymph nodes in her groin were removed and tested for cancer. Three out of nine had cancer.

At this point in Staci’s cancer journey, she was 20 weeks pregnant with our son Boone (about halfway to a typical full-term delivery date). We had three options:

  1. Terminate the pregnancy and begin treatment immediately
  2. Wait to start the treatment when the baby was at 32-34 weeks
  3. Start a form of treatment that is safe for pregnancy, but not necessarily effective

As you can imagine, this was an incredible decision to make. We sought the opinion of a second doctor, who specialized in Melanoma at Northwestern Memorial Hospital in Chicago. We ultimately decided to wait on any treatment and induce the delivery early.

Between October and February—an incredibly short four months—we focused on preparing to be new parents as best we could. The baby was healthy and growing, although there was still a chance the Melanoma could spread to the placenta. Then on February 1st, we welcomed our son into the world. Boone Anton quickly became Staci’s greatest joy. After two weeks in the NICU, the test results came back negative for Melanoma. Knowing he was safe was a HUGE relief! After recovering from delivering Boone, Staci had another PET/CT scan on February 5th to get an updated baseline of the cancer in her body. In the short time we had waited to deliver the baby, the cancer had spread to the bones in her back, lungs, liver and spleen. Her diagnosis was Stage IV, meaning no longer curable. She started an immunotherapy treatment and went in every three weeks for about three-four hours with the hope that the treatment would shrink the cancer spots. All the while marveling in our precious little boy like a new mom.

A week shy of Staci’s 30th birthday on April 26th—only six months after her initial diagnosis and just short of two months after Boone’s birth—she lost her battle with Melanoma.

Since then, Boone and I have received an overwhelming amount of love and support from all the people who loved Staci. It continues every day and we’re blessed to have this community in our lives.

Right now, we are focusing on making goals each day. Some things are getting easier, some are getting a lot tougher. But I have Boone to keep me going. Many people have made an impact on his life and future already with love, donations and support. I can’t thank you all enough. He’s one special little guy and I don’t know where I’d be without him. Boone is not only our son, but he’s also a reminder of her.

Words can’t explain how much I miss Staci. I’m beyond honored to say that she was my wife. I will always miss and love her, and she will forever be in my heart. Not only because she gave me the best years of my life but she also gave me—and all of us—Boone.

I thank everyone who has taken the time to reach out and see how life is going for Boone and I. With your help and support we can continue to share Staci’s story. Boone will know his mother through all of you. He’ll also grow knowing that his mother’s battle and story helps save lives every day. In Staci’s words…

“I’m telling my story because this is a part of my life and always will be. There will be good days and there will be bad days, but I’m always doing my best to stay positive. Please remember to wear sunscreen and get any suspicious moles or marks on your body checked as soon as you notice them, don’t wait!

To keep up with Dustin and Boone and to share your support, please visit Staci’s Story on Facebook. Words of love, support and encouragement are very much appreciated.

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Skin Diaries

25-Year Battle With Melanoma Leaves Warrior ‘Fortunate’

My personal journey with melanoma began long before my first skin cancer diagnosis. I grew up near the Gulf Coast beaches of Florida in the 1960s and 1970s. A time when sun protection consisted of a floppy hat, a white t-shirt, and suntan lotion. Several trips to the beach ended with red, raw shoulders and a burned nose. I have light-brown hair, blue eyes, and a seemingly infinite number of freckles, moles, and skin blemishes. This places me in the high-risk category for skin cancer. Several years ago, a dermatologist told me that with my skin type, I should have grown up in Minnesota, not in Florida.

In the 1980s and early 90s, I continued to abuse my skin. Like many young people in those days, I worshipped the sun and spent too many weekends out by the pool baking in the early afternoon heat. I never used enough sunscreen and, when I did use it, I certainly never thought about re-application. In addition, I fell into the trap of occasionally using tanning beds to get a base tan.

In the mid-1990s, I decided to have a mole on my right shoulder checked out. A biopsy revealed that I had melanoma in situ. That decision in 1995 probably saved my life. It also started the next phase of my journey. From 1995 to today, I’ve had 8 melanomas – ranging from in situ to Stages I and II – diagnosed and removed. I also had a basal cell carcinoma removed from my upper left cheek. (You can still see the small divot in my face.) For the next ten or so years, I routinely visited dermatologists and general surgeons. I took precautions – putting on sunscreen and wearing a hat – but by then the damage to my skin was done.

A major twist in my journey occurred in 2011 when a previously biopsied lesion tested malignant, and I underwent immediate surgery to remove a Stage IIC tumor along with a tennis ball-sized area of surrounding tissue from my upper back. The surgery included an extensive skin graft and the removal of several sentinel lymph nodes from my neck (which, thankfully, were clear). I was in physical therapy for 6 months, and I still have stiffness in my back and limited range of motion. Years later, the hole in my back – as I call it – is very ugly and the scar tissue still tender. As my plastic surgeon once joked, I wasn’t going shirtless to the beach any longer.

On July 24th, 2013, another major turn in my journey happened when a PET scan revealed that melanoma had spread to my lungs. The likely source of the metastases was the malignant tumor removed in 2011. The oncologists believed that a tiny bit of melanoma escaped from the primary site via my bloodstream. I was told that if the cancer didn’t respond to treatment that I would likely die in 9 to 12 months. Naturally, I was in shock as I left the clinic that day. It was completely surreal.

Even with a metastatic melanoma diagnosis, however, I was fortunate. Following my 2011 surgery, protocol dictated that I would be scanned every three to six months for the rest of my life. So, I now have a permanent oncologist along with new dermatologists who understand my circumstances and are diligent in their skin exams. Anything in question is immediately biopsied.

A final twist to my journey is based on simple genetics. My metastatic melanoma is somewhat atypical. Following the 2013 diagnosis, two separate labs confirmed that my cancer has a c-Kit mutation, which is found in less than 7 percent of all melanoma patients. This rare mutation, however, responds well to a specific oral chemotherapy drug. Once I began taking the drug, some of my tumors actually shrank.

It sounds strange to say that I am fortunate, but I am. It is 2019 and I am still here to continue this journey. The metastases in my lungs remain relatively small and stable. In the past six years, I’ve been able to watch both of my children graduate from high school and college. My wife and I travel extensively and, yes, we go to the beach or the mountains every year. I still garden every spring. I will not let skin cancer keep from doing the things I love!

Finally, I use my circumstances to reach out to others with this dreadful disease and to advocate for more skin cancer research. In addition, I volunteer my time with national skin cancer organizations and local cancer charities. I maintain a blog that details my journey (from 2013 to the present): In Difficulty Lies Opportunity. My present journey continues with curves and bumps, but I now appreciate the small things in life that truly mean the most.

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