Okay. You’ve just had an ophthalmologist say a word you had *no* idea could apply to your eyes: melanoma.
Lesson: Melanoma is the term for any growth (whether benign or malignant) that arises from melanocytes, the pigment-producing cells of your body. They only happen in two places: your skin (where most people find out about melanoma, i.e., skin cancer), and in your eye (because your eyes have pigment, too).
If you’ve been diligent about getting your eyes checked every year, what the doc found is likely just an “eye freckle,” not a full blown tumor, and he or she is sending you to a specialist just to be on the safe side.
But if you’re reading this, chances are you weren’t so lucky.
Lesson: CM “neoplasms” (i.e., something new and squishy, like tumors) come in three sizes, Small, Medium, and Large. The size of the base of the tumor where it attaches to your eye determines treatment options. So does the thickness of the tumor walls and its color.
I was getting MRI after MRI trying to determine why I suddenly went numb from the soles of my feet all the way into my groin over the course of four days. I was supposed to be testing for my black belt in taekwondo; instead I was getting pumped through the ER with words like “stroke,” “Guillain Barre Syndrome,” and “cauda equina” following me. (If you don’t know what the last two are, don’t google them. Suffice to say they’re just as bad as stroke.) As my medical odyssey stretched into weeks and my legs remained numb, a self-described “completist” neurosurgeon (God bless him) ordered an MRI of my brain. He had ruled out any structural issues, but had found a demyelinating lesion on my spine; he wanted to rule MS either in or out for his successor, a neurologist. When the neurosurgeon called me with the results, I was not expecting the words, “There’s something in your left eye we don’t like the look of. I’ve made you an appointment with an ophthalmologist today.” It suddenly made numb feet not sound so bad.
Later that day, I *really* wasn’t expecting the ophthalmologist to mutter excitedly (while he was still boring the loupe and bright light into my eye), “Oh yeah, that’s totally melanoma. Yeah, a choroidal melanoma.” And I cannot describe my shock when he shoved away on his little rolling stool, stood, opened the exam room door, stuck his head out and called to his staff, “Hey! Come in here and take a look at this choroidal melanoma! You won’t get another chance like this for a while.” My head was still in the rig, for God’s sake. He hadn’t even told me what I had–not officially, anyway. His staff looked shamefaced as they shuffled in. But all I could think as Thing 1 and Thing 2 ogled the tumor in my left eye was, “If seeing this helps them save someone else’s life down the road, let them look.”
Lesson: CM is rare. Sometimes docs will get excited to see something IRL that they’ve only ever seen in textbooks, and they’ll forget you’re a human being.
The ophthalmologist from Hell sent me across town (driving while dilated, such fun!) to another ophthalmologist for a second opinion. By the time I left that office, the building was locked and the cleaning crew was working. I wept in an empty parking lot.
By the time I got home, I’d been on my own and on the move in controlled panic mode for almost six straight hours. I’d been poked and prodded by multiple people. My eyes had had seven sets of dilating drops put in them. I was so dilated I couldn’t read the business cards I’d been given, and they were my only information. I’d found out I had cancer. I had to explain that fact to my eight-year-old and my husband, waiting at home. And I had to wrap my head around the fact that not only would radioactive isotopes get involved, and soon, *there was only one doc in the entire state* who could do the work, and he was 90 miles away.
Lesson: Did I mention that this is rare? Unless you live in a world-class city, you’ll probably have to travel for treatment. Treatment has two phases, acute and maintenance. During the acute phase, life will come at you fast. Multiple appointments, crazy dictates on your schedule, a blizzard of information from the internet (none of it good) and conflicting info (or none at all) from what will turn into an army of docs. Your eye will literally ache bone-deep from the poking and prodding. Stay positive. Take notes. Hell, start a binder. I did. It was the only way to keep it all straight: a timeline of symptoms and visits, important numbers and addresses, insurance info, printouts of results, even disc copies of all imaging–because there will be a lot of it, and no one’s computer systems talk to each other. Get the techs to burn you a disc the red-hot second they’re done. Getting the same disc later is stupidly difficult.
The next step was seeing the specialist, obviously. But that will have to be the next CM post: Advanced CM. And, you guessed it, there’ll be a Pro Level, too.