This beast is sneaky and it has no shame-Linda
When I was 43, I was sitting in front of a computer terminal when my vision in my right eye became distorted. I immediately went to see an Opthamalogist. They inserted dye into my body and took pictures of the eye. Suspecting it was Ocular Melanoma, I immediately went through many test and bloodwork. After weeks of test, it was determined it was not Melanoma. I had a freckle on the retina by the optical nerve. I was scheduled for laser surgery to zap this freckle which was leaking fluid and that was why my vision in the right eye was distorted.
After laser surgery, my vision returned to normal. I was warned to keep regular checkup as this Nevus could turn into Ocular Melanoma. Well Lord and behold, over 20 years later my vision in the right eye took a turn for the worse. Once again, my vision was distorted in the right eye.
I did not have insurance at the time, so I contacted the Lions Club and they were kind enough to pay for me to see an Opthalmalogist. The testing was much more sophisticated, ultrasounds and pictures of the eye. I was surrounded by many doctors and interns when given the news that it was a large tumor and was indeed Ocular Melanoma. The doctor told me I need to immediately have an enucleation of the right eye. I refused to believe this.
At the time, President Obama had just passed a bill that made insurance companies honor pre-existing conditions. So I signed up for health insurance and went for a second opinion. I received the same medical opinion, but we discussed a new medical procedure called radiation plaque therapy. This procedure entailed a plaque sewn over the eyeball where the tumor was. The plaque held many beads of radiation that penetrated the tumor and in return it would shrink and kill the cancerous tumor.
I went in for the surgery to have the plaque inserted. I wore this plaque for 5 days and then back in the hospital to have it removed. I was monitored every 3 months taking pictures and ultrasounds to ensure the tumor was shrinking. A year and a half went by and the tumor had been shrinking up to that point.
I developed extreme pain in this eye. I immediately went to the Opthalmalogist and after the pictures and ultrasounds, it was discovered the tumor was growing back like wildfire. My doctor said we have to schedule the enucleation immediately. I had to wait a full month to have the surgery and the pain was so bad, I remember not caring if I lived or died at that time.
After the surgery, I felt an extreme loss. But I somehow tucked it away. It did not help that I was all alone going through this ordeal. When the eye was removed, I had genetic testing done. Castle did the testing. Ocular Melanoma is not staged the same way as regular cancer. There is class 1a, class 1b and class 2. I am class 1b. Class 1a gives the best chance of this beast not spreading to the liver and lungs (that is the organs it spreads to). Class 1b you have a little higher chance of spreading and class 2 the chance of this beast spreading is high.
I remember fighting with my insurance company to get a prosthetic. They would not pay for it. So I had to spend $3,000 for my prosthetic out of my pocket. With the help of The Ocular Melanoma Foundation, they gave me $500.00 toward the prosthetic. Please get your eyes and your children’s eyes checked on a regular basis. This beast is sneaky and it has no shame. Thank you for reading my story.