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Caregiver Perspective on an Ocular Melanoma Diagnosis

Guest blog from Paul Zubeck, caregiver to his wife Lindsay who has ocular melanoma: 

I became a caregiver in March of 2017 when my wife, Lindsay, was diagnosed with ocular melanoma (OM). What started out as possibly being a detached retina was actually a tumor growing in her eye. When the diagnosis was reached, I was filled with confusion and fear. I had never heard of OM.

With three children that were seven, five and three years old, we did our best to keep everyday life as normal as possible. It was definitely a challenge as Lindsay was needing to go out of the state for treatments starting with trips to San Francisco for proton therapy to kill the tumor. Later in the fall, she was accepted into a clinical trial that would require making monthly trips to New York City for checkups and to pick up her medication. Luckily, Lindsay would frequently travel for work, so her trips didn’t seem too out of the ordinary. Plus, her parents and grandmother would divide up helping me out with the kids and traveling with her so she wasn’t alone. My caregiver role when Lindsay was traveling was to hold down the fort so she didn’t have to worry about it and could focus on herself.

Our days were already completely full with work, kids activities, etc. It seemed that it would be impossible to keep up with everything now. It felt like I had to take on the world all on my own. But now looking back, I’m thankful for all the chaos as it provided distraction from being constantly worried about Lindsay’s health all the time and let me enjoy being in the moment with family and friends.

I couldn’t imagine the last four years without the support of our amazing family, friends and coworkers to ensure we did everything possible to get the best care for Lindsay. My job as a caregiver was made simple by all of those surrounding us and I cannot thank them enough.

Through all the ups and the many downs, I always did my best to stay positive for Lindsay. The road traveled to date on this journey has been very difficult. From diagnosis, to treatments, the clinical trial, to an eventual enucleation that required more hospital trips and then another surgery, nothing has ever been routine. In fact, it seemed as if we could never catch a break. But at the end of the day, her health was all that was important and how we got there was just a simple part of the equation.

When Lindsay was diagnosed, all we ever wanted were options because we knew with options there was HOPE. With more and more treatments being developed for melanoma, including the first approved treatment for OM, there are a lot of reasons to have HOPE.

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