#EyeGetDilated: Ocular Melanoma Awareness – Jon Davis

Guest Blog from Jon Davis, a metastatic ocular melanoma survivor:

“I’d never heard of “eye cancer” as a thing until my daughter’s kindergarten after-school activity teacher stopped doing her work to deal with it after she was diagnosed. “That’s strange,” I thought, “I didn’t know that was a thing!” Fast forward a number of years when the same daughter was in the 6th grade, and I was having some strange vision issues. I should backtrack a bit to say my vision has always been excellent. As a pilot for the Air Force, I had yearly flight exams that included an extensive look at the eyes, but I never had any issues and always came away with 20-15 vision. So, when I started having some strange symptoms (perceived reduced vision in the left eye; a feeling like there was a fan making periodic shadows on my left side; and some white lights moving around my eye on occasion), I called the ophthalmologist. It would be two months before I could get in but, since it wasn’t really bothering me, and I never had any eye issues, I figured it couldn’t be that bad and said I could wait. 

The Tuesday before Thanksgiving arrived, and I went to my appointment that afternoon. The doctor looked me over and told me he had some concerns, and he needed to make some calls. He came back and said he’d managed to book me an appointment for me the next day with a retina specialist in Denver, about 60 miles away. He said, “I think it’s a tumor, but I don’t want to say for sure and the specialist will do more tests to determine exactly what’s going on.” 

The afternoon before a day to celebrate all things to be thankful for, I got the news that I did, indeed, have an eye tumor that was just below the limit that would allow alternative treatments besides the removal of the eye. I spent the time between Christmas and New Year with a lead patch over my eye following surgery for radio-plaque therapy and began the journey that I hoped would just be dealing with recovery from eye treatment. However, I learned I was at high risk of metastasis based on the tumor typing that was done. In the ensuing four years I had more things done to my eye than I ever could have imagined including repair of two detached retinas, multiple laser treatments, shots into the eye (my daughter quipped, “Well, I guess you can tell a lie now since ‘cross my heart, hope to die, stick a needle in my eye’ has been covered.”), and cataracts leading to lens replacement and more laser treatments. In the end, while I still have my eye, I really don’t have any vision left in it. 

The eye, however, was just the beginning. After four and a half years and some experimental treatments that likely postponed metastasis, I learned of a singular tumor in my liver. Since I paid little to no attention to the possible negative effects of the disease, I had no idea that diagnosis was a near certain death sentence but set about to deal with it and the four or five tumors in the liver that followed, including participation in a medical trial. Lung and brain tumors have followed and have been dealt with as they arise. 

This experience has led me to want to make people aware of not only the possibility of this relatively unknown disease, but to bring an understanding of all that can come with it and the importance of staying on top of scans and treatments. It all starts with being aware and protecting your vision. Know that, while it’s rare, it is possible, and you’ll never know early enough to protect your vision without having regular eye exams. It turns out that a history of excellent vision without any eye problems is not a good indicator of whether you might get the disease. I continue to try my best to take care of my vision as having only one eye means I cannot afford to lose any more! 

To that end, the partnership the MRF has with Revo to both help patients protect their vision and spread the word to more people about this disease to protect their health is truly remarkable. Revo’s partnership with the MRF is critical to an organization that works tirelessly to raise awareness and help patients as they journey through this disease. Their efforts are a blessing to those they help now and those who don’t even know yet about ocular melanoma and how it might impact their lives.”