Hidden in Plain Sight

“I’m recommending the removal of your right eye.”

“Come again?!?”, I blurt leaning forward in the grey leather exam chair. 

We’re at UCLA, my husband Kyle and I, at the Jules Stein Eye Institute. We’re receiving confirmation of the diagnosis I was given in Las Vegas the week prior. However, they don’t have the capacity to treat me, so I’ve been sent up the medical food chain to the top of the heap. They get me seen within a week. They’re in a rush. Which makes it even more frightening.

I have a choroidal melanoma in my right eye. What the shock is of the moment, (and how many there have been this past week), is this course of action.

Let me get this straight – I have this bizzarro-rare form of cancer that no one ever gets, and no one’s ever heard of, and now you’re going to TAKE MY WHAT!!!??

The doctor sits in front of us, calm. Her demeanor does not match the gravity of her words. She is an Ocular Oncologist – of which there are only five in the entire U.S.

I breathe. I cry. I look at my husband and he’s looking down and then up at me and he’s trying to keep it together to be strong for me, but he’s scared. So am I. We ask for options. The doctor flounders trying to reassure us that really, prosthetic eyes are very good these days. No one will ever know.

In the past week of reading about my diagnosis I have learned much. A choroidal melanoma is a rare form of cancer that forms within the eye itself. Only six people in a million are diagnosed with it. This all started with a retinal separation and ended up here.

I’m adopted from birth, born in 1965 and have only known my parents who raised me. I don’t know my medical history. A wild-card health scare was always a possibility, but this was never something I could have imagined.

The tumor is large and takes me out of contention for what we were told would be the likely solution – radiation therapy. That sounds better, right?

Even stranger, it’s Halloween, October 31^st, 2013. A day seared into my memory. Not only am I going through six hours of all these outlandish eye tests with dye casts and ultrasounds, but administered by a staff that is dressed up like a ladybug, a Little Bo-Peep, and a Dr. Doolittle, to name a few.

It’s a hospital. We don’t need any blood-sucking vampires or zombies around here. Wouldn’t want to scare anyone…

The doctor continues. “We don’t know why these cancers form, we really don’t. You did nothing wrong, there are no contributing factors in your habits or lifestyle. These just happen and we don’t know why.”

A drive-by cancer. A random act of DNA violence.

“You’re going to need a scan of your liver at least once a year, every year, for the rest of your life”, she continues. “This cancer likes to come back in either the bone or the liver. 

“Wait”, we ask, “we had previously been told that the eye doesn’t share its blood source with any other part of the body and that this means the cancer wouldn’t spread.”

Not true on that account either.

As the aftershocks pile up, I feel completely unable to cope. Now, the doctor has more tests for me. Visual acuity to determine which eye is dominant – my left thank God. The one I get to keep. Plus, a whole slew of color blocks and confusing images to look at. The cards flip, I respond as best I can. Numb.

I feel weak inside but I’m always a good little girl, even as a forty-eight-year-old woman. I’m a rule-follower, never a troublemaker or someone who makes a scene. And I certainly don’t do that farce ‘wilting lily’ routine my mother always pulled. She was the ultimate passive aggressive. Emotionally exhausted I do exactly what is asked of me without complaint. As I always have.

It's 5pm before Kyle and I leave UCLA. Devastated at the day’s news we face the long drive home to Las Vegas. We inch through traffic eastward, unable to speak or even listen to music. It’s as if time has stopped on this Hallows Eve and we are suddenly alone in the dark of the car, unable to find firm footing even with each other. When you talk about things you make them real.

There are no other options. The cancer is growing, and quickly. If it touches the ocular nerve, in an instant, it will spread to my brain. Thus, the urgency. I must say “Yes” to the surgery. I want to live.

***

Three weeks later I walk into the hospital at UCLA to willingly have a doctor remove my cancer-infused eye. Friends and family rally around me. We are tight in our community, and I recover swiftly. An eye patch is necessary for six weeks, and a crafty friend creates hand-made glitzy ones to wear for the Holidays. A girl’s gotta have a little color!

***

In early January I’m fitted for my prosthetic by my ocularist. He is the newest favorite of this unusual medical care constellation. He hand paints the new eye based upon photos taken of me before removal. It’s true – no one really knows the truth of what they see. I pass by them without remark. Even close friends forget. The cancer gone for now, life returns to a new normal.

***

What I didn’t know then but do now, is a great many of the people with this diagnosis who have radiation therapy eventually go blind in that eye. And often it gets diseased or becomes discolored or blood vessels rupture and they end up in pain, feeling unable to fully function, or scarred and ugly. Many then end up having their eye removed years later after struggling through those problems.

I live with a visual secret that no one knows yet stares you in the face. My right eye is a prosthetic and I’m glad it worked out that way.