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Skin Diaries This is Brave

This is Brave: Jess Van Zeil

As long as I could remember, I’d had a red spot on the white of my left eye. In my late teens, it started to grow, change and become raised and irritating. After years of following this up with my general practitioner, I finally got referred to an ophthalmologist when I was 20. He did a biopsy, which came back benign (non-cancerous). Six months later, three very dark spots that resembled a skin mole grew on the same eye. I had the second biopsy done on these new spots and was officially diagnosed with conjunctival ocular melanoma at the age of 21 in January 2015.

When I was told I had ocular melanoma, the room became blurry, an overwhelming sea of emotion and fear came over me and drowned out everything he said following my diagnosis. Cancer, on my eye?! Can that even happen? Isn’t cancer for old people? Is my life basically over now? It had barely begun!

I felt nauseous, trapped and confused. I didn’t feel or look sick so how could my life potentially be on the line? I wondered how long it would be until this illness caught up with me and actually made me look and feel unwell. However, a few weeks passed, and nothing really changed.

I had a lot of check-ups until they informed me that my treatment plan would be watching and waiting. No chemo, no radiation, nothing. I was so confused. Grateful, but confused. It almost felt anticlimactic, such a scary diagnosis and yet all I needed to do was see my oncologist every six weeks.

Six months went by during which I had more biopsies which all came back benign. We started to relax, my appointments became less frequent and life went back to normal. Then, what felt like it happened overnight, I noticed five new spots on the white of my eye and a small lump underneath my eyelid in August 2015. I went to my general practitioner first and he called my ophthalmic oncologist’s office right away. I was booked in to see him a few days later.

I could tell my oncologist felt unsettled at this appointment, he didn’t like what he was seeing and booked another biopsy. All the new spots he removed came back positive for malignant melanoma. This was when the tune changed. Things escalated quickly and I was being told I was going to have to lose my eye and eyelids, and that they’d close over the socket for good in order to save my life.

I still remember the pain and anger I felt in the moment. The very normal life I had imagined for myself—the typical, all-American family life with a husband, a house and a great career—was ripped away in that moment. I went home that night and thought about my options. Very quickly, I realised that I would do whatever it took to save my life. The only real choice I had was whether or not I’d let this break me. Would I hide away from the world or would I find a way to embrace it?

Well, within a few days, I decided I wanted to embrace this new look and make it my own. I went online and found beautiful, bright eye-patches that were going to be my fabulous new fashion accessory. It took me less than 24-hours to embrace my diagnosis and the opportunities it presented.

On October 9th, 2015 I had an exenteration—complete surgical removal of my eye and the contents of my eye socket. The first few days I was in a lot of pain. I couldn’t keep food down and I slept in 90-minute cycles. On the fifth day I had the dressing taken off and got to see my new look for the first time. To best describe how I felt, I’ve taken an excerpt from my book Eye Won: Powerfully Positive, Ridiculously Resilient

“I almost bounded out of bed to see my new face. I expected to see someone foreign staring back at me, but I saw my bright familiar smile, my freckled cheeks, my button nose, my on-point eyebrows. The only difference, there was one eye staring back not two.”

I analyzed my face and saw a soft beauty in it and my smile brightened as I accepted the woman in the mirror as me. I silently told her that she was beautiful, strong, courageous and most importantly…still me. I tried out my new eye-patches and explored the world a little, embracing my new fashion accessory.

Life quickly went back to normal. Within a month, I was working, driving, studying and socializing. The only thing that had changed was I had a fun new accessory, my eye patch. Most importantly, it looked like we had eradicated the cancer! While the surgery had been challenging both physically and emotionally, I was grateful we’d done it and I could go back to living life as a twenty-something-year-old woman.

On September 9th, 2016 I remember sitting at home with my mum planning out how we were going to celebrate my first annual eye-versary when I had a seizure. I was raced to the hospital and told that the melanoma had spread to my brain and had become Stage IV Melanoma. My heart sank, I knew that everything I had faced up until this point had been child’s play in comparison to what I was about to face.

After having brain surgery to remove the cancer, I had to relearn how to walk and start an ipilimumab plus nivolumab (Ipi/Nivo) blend to prevent the development of more tumors. Looking back on that time, I know I felt terror. To get through it, I focused on what I was grateful for, the blessings I had and the things that made me smile.

More than anything else, the overwhelmingly beautiful feeling of gratitude is the first emotion that comes to mind when I think of my cancer journey.

Three and a half years after my brain surgery and I am thankfully still stable. I have such a beautiful appreciation for life and have accomplished so much. I completed my university degree during my treatment for Stage IV Melanoma. I hiked the Kokoda Trail in 2018, exactly two years after taking my first steps. I wrote and published my book Eye Won, which became a best seller in October 2019. And I got engaged to my incredible fiancé!

Cancer has taught me so much about myself and about the world. While it’s not something I would ever wish on anyone else, I would not be the woman I am today without it. For that I am grateful.

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Skin Diaries This is Brave

This is Brave: Lindsay Zubeck

In March of 2017, at the age of 34, I was diagnosed with Ocular Melanoma (OM). By November 2018, after trying a series of treatments, the decision was made to remove my eye. I thought I had prepared myself and my family for the healing process and emotions after my enucleation, the removal of my eye. We had talked about what it would be like for me to wear an eye patch in public for a few months until my prosthetic eye was made. We prepared for the physical parts of it, but you can never really prepare the emotional part.

The first time I went in public with my patch, my daughter asked me to come close to her and she pulled my hair in front of my patch. I asked if she was embarrassed of mommy and she said yes. We both started to cry but I quickly wiped my tears and hers. I looked into her eyes and said, “This is our life now. We have to learn to get used to it and it will be ok.”

Along my cancer journey, I have always been open and honest with my kids. I’ve told them everything they needed to know in the moment. Many of our conversations have been around “personal problems”. Everyone has problems, which is why it’s important to always be kind as you never know what their problem may be. Mommy’s problem is eye cancer. Some people’s problems are noticeable—like mine—others might have scars hidden under their clothes or emotional struggles deep in their heart or mind. Everyone’s problem is different, but everyone has their own battles.

After my daughter and I had that moment, I decided that even though the emotions were challenging and being in public was hard, I was not going to miss out on life. I have an amazing, supportive family and friends who all love me for me—with or without an eye. Some days, I would love to have the old me back, but the new me is pretty darn cool. I can pop my eye out when I want (most kids can’t say they can hold their mom’s eye) and I’ve learned to truly enjoy life—which many struggle to do.

Ultimately, I’ve learned to be me and I hope I’m teaching my children to do the same.  With my cancer, my family has learned to be flexible, enjoy the moment, celebrate each win, support others and ultimately, embrace and love who they are. My advice to them is the same for you, no matter what you’re going through or what problem you’re facing—Be YOU. What makes YOU special and how can YOU enjoy your best life? How can YOU turn your ‘problems’ into ways to make yourself and those around you better?

As we age, who YOU are will inevitably change. But no matter the challenge your facing, YOU can always be who YOU are meant to be!

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Together We Will

Together We Will… Cure Ocular Melanoma

We often think of melanoma as a cancer of the skin, but ocular melanoma, a lesser known form of melanoma, can develop in the eye. There are only a small number of physicians in the US who specialize in ophthalmic oncology. One of those specialists is Dr. David Abramson, Chief of Ophthalmic Oncology Service, at Memorial Sloan Kettering Cancer Center (MSK) and Professor of Ophthalmology at Weill-Cornell Medical Center. Dr. Abramson will be honored with the CURE OM Vision of Hope Award at the Melanoma Research Foundation’s 17th Annual Wings of Hope for Melanoma gala in New York City this October.

Founded in 2011, CURE OM (the Community United for Research and Education of Ocular Melanoma) is the MRF’s initiative to increase awareness, education, treatment and research funding for ocular melanoma, while improving the lives of people affected by this disease.

 

As Chief of Ophthalmic Oncology Service, Dr. Abramson utilizes the Center’s close associations with specialists in pediatrics, radiation oncology, and medicine, to offer coordinated, state-of-the-art care with access to novel therapies and clinical trials not available anywhere else in the country. We had the honor of speaking with Dr. Abramson about his specialized path:

COOLIBAR: How did you find your way into the specialization of ophthalmic oncology?

ABRAMSON: I was fortunate to train in Ophthalmology at Columbia Presbyterian in New York which-at the time-had the world leaders in ophthalmic oncology (Algernon Reese MD and Robert Ellsworth, MD). I love the field of Ophthalmology but wanted to do something that made use of my scientific background, surgical training (I have performed more than 7,500 surgeries), research skills (I have published more than 700 papers), desire to help women and men, adults and children. I did a fellowship in ophthalmic oncology and did additional specialized training in pathology at the Armed Forces Institute of Pathology and Radiation Oncology. I am the only physician at MSK tenured in Surgery, Pediatrics and Radiation Oncology.

C: Have you seen a significant increase in the number of melanoma in the eye diagnosis year after year?

A: No but these cases are handled by only a small number of physicians in the US so we are quite busy seeing patients at MSK.

C: How does the MRF help you do the work you do?

A: Research doesn’t just happen any more than a car drives without gas. Money and awareness are the fuel for research and without that our car doesn’t go. MRF does both.

C: What inspires you to continue to pursue your work each day.

A: I am inspired by my failures, not my success. I try to understand why we failed, what we can do to be more successful and commit myself to those patients who have lost their battle with cancer. I will stop when I cure 100% of patients with no side effects.

C: Is there anything else you would like to share about the work you do?

A: I am the quarterback of a team and while it helps for me to call good plays our success is a result of that team. My nurses, researchers, colleagues, technicians and even the people who maintain our instruments are critical to success. Without the commitment of a special place like MSK and the support of organizations like the MRF, I would be throwing passes to an empty field.

 

Ocular Melanoma is the most common eye cancer in adults and the second most common location for melanoma. Approximately 2,000 Americans are diagnosed with ocular melanoma each year, and about half of these cases spread to other parts of the body, most commonly to the liver. When this occurs, it is most often fatal. There are treatments to help alleviate symptoms and extend life, but there is no known cure for ocular melanoma.

Ocular melanomas develop between ages 55 and 65 most often and usually are detected on an ophthalmic examination without symptoms. They are a disease of people whose families emigrated from Europe and rare in Asia and Africa. The more north in Europe your family is from the higher the incidence of ocular melanoma. Unlike cutaneous melanomas, sunlight plays no role in their development. Ocular melanoma should be treated by an ophthalmologist who specializes in treating eye cancers as most Ophthalmologists have limited experience in managing these tumors. Dr. Abramson combined his love of Ophthalmology with his scientific background, surgical training, research skills and desire to help people of all ages to become one of the few specialists qualified to treat ocular melanoma. He has trained with pioneers and world leaders in ophthalmic oncology, including Algernon Reese, MD and Robert Ellsworth, MD.

The CURE OM Vision of Hope Award will be formally presented to Dr. Abramson at the Wings of Hope Gala in New York this October. If you would like to attend the Wings of Hope Gala or learn more ways to support the Melanoma Research Foundation, visit: www.melanoma.org/get-involved/signature-events/wings-of-hope-galas.

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Educate Others Expert Rx SunAWARE

Ocular Melanoma: Skin Cancer in Your Eyes?

Yes, melanoma – known as the most serious type of skin cancer – can occur in your eyes! In fact, according to the Melanoma Research Foundation, ocular melanoma (also known as OM) is the second most common form of melanoma, with about 2,000 new cases diagnosed each year in the U.S. About half of OM cases are eventually fatal as the cancer spreads to other parts of the body.

And as with all melanoma or non-melanoma skin cancers, prevention starts with education. A terrific guideline: The greater your risk of developing skin cancer through exposure to UVA and UVB rays, the greater your risk of developing OM.

Why the Eye?

OM is similar to skin melanoma, but there are significant differences. Many people have heard of the natural pigment melanin, which gives our skin its particular color, and we might also know that melanoma develops from the cells which produce melanin. But these cells are not just in our skin. We carry them in our intestinal lining, and in our hair; they also give color to our eyes.

Who is at Risk?

Researchers at the Memorial Sloane-Kettering Cancer Center say that people most at risk for OM  generally:

  • Have fair skin, and tend to sunburn easily.
  • Have light-colored eyes.
  • Are of European descent, especially northern Europe.
  • Have occupations such as welding, where proper eye protection is vital.

Also, age is a factor: people 50 and above have a much greater risk of developing OM.

What Can You Do?

It’s important to realize that anyone can develop ocular melanoma. Our eyes are constantly exposed to the sun whenever we are outside, whether we are active on the tennis court or running errands in the car. We should pay attention to eye care right along with skin protection. Here are some tips:

– Invest in a good pair of sunglasses. Look for a pair that blocks 99-100 percent UVB and UVA rays. The Mayo Clinic in Rochester, MN offers tips on selecting sunglasses.

– Wear a hat with at least a 3-inch brim (minimum recommendation of the American Academy of Dermatology).

– Start your children early on the path of UV protection. Get them into the habit of wearing sunglasses and hats.

Take it from melanoma survivor Timna: “EVERYONE needs to do everything they CAN do to protect their eyes”.

Check out our selection of sun protective sun hats and sunglasses.  All Coolibar sun hats are UPF 50+, and all sunglasses carried by Coolibar block 100% UVA/UVB rays.

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