Featured Story: Danette’s Prosthetic Eye Journey

Thirty-two. That’s how old I am today. I was twenty-eight when I lost vision to a rare cancer called ocular melanoma in the summer of 2020.

I jokingly say 2022 was 2020, too, because it was hell to be diagnosed that summer of 2020 with eye cancer, but 2022 catapulted me into a whole new realm of crazy.

The summer of 2022 marked the start of my metastatic cancer diagnosis – mets to my liver. How it gets from the eye to the liver is a whole other story – but within weeks of my liver being treated for cancer in a surgery that fall, I found out my originally diagnosed ocular melanoma eye was deteriorating so badly it had to be removed in emergency surgery because at the time, in November of 2022, it was suspected that my feisty eye tumor was growing again.

Terrifying. Breath stealing. Unfair. In some ways, it felt like I had gone through a radiation treatment on my right eye for no reason at all, if it all ended in the same place, with emergency enucleation or removal of my eye.

My mantra the last two years has been “I’m here today, I’ll be here tomorrow; eventually those tomorrows add up.”

When the fear has been so suffocating I can hardly think of anything else, that is what I default to. The belief that somehow despite all the obstacles, this could all pan out okay.

After my eye removal, it was pretty much a done deal that I was expected to have radiation to my eye socket. This would mean I couldn’t even think about getting a prosthetic eye until a solid 3-6 months after radiation, that I’d lose my eyelashes and likely never have a comfortable prosthesis fit.

Thankfully, perhaps a small miracle of its own, the full globe biopsy revealed radiation would not be necessary and I immediately got on the phone with Eye Concern to schedule my initial evaluation appointment.

Trent and I had quite the journey creating my eye.

The day I went in for painting I vividly remember feeling so excited, so in awe of the process; and yet leaving that day exhausted, a little bit defeated, and with a tired, achy eye socket.

All the in and out of the evolving prosthetic required to match the living eye, to get the features of my prosthesis just right so that it didn’t just look like mine, it FELT like mine—it was a vulnerable process. And there was a lot of grief that came up for me during the three days I spent in the office having my eye made.

As I left, I told Trent I really wanted him to “tattoo” my eye for me, just somewhere high up on the upper lid area, somewhere no one could see when they looked at me, but that I would know was there.

I sent a few pictures of the symbol of the Deathly Hallows from Harry Potter, which is also tattooed on my right arm, and he told me he couldn’t make any promises, but he would do his best.

Pick-up day came; I did my hair and make-up, just wanting to feel like myself, and to feel as confident as possible. I think that whole “fake it till you make it” attitude for SURE can apply here.

I went in, and he showed me the finished eye, complete with the small Hallows tattoo.

The day before, I had left the office feeling like the eye we had worked so patiently to get just right wasn’t quite MINE. The day I saw the little tattoo, and put the eye in myself – it was instantly mine and I felt so much more at home.

Fast forward over a year later. I’ve had a few adjustments and tweaks made to ensure my eye fits well, but overall, I’m so incredibly happy with the journey to get here, and with where I am today.

I’m still navigating a metastatic diagnosis. Still showing up with tons of rebellious hope that despite all the obstacles I’ve encountered, somehow, I’ll be okay.

Thank you, Eye Concern, for being a continuing part of my journey on the path toward resilience in this rare cancer diagnosis, for helping me to feel at home with my new eye, and for embracing this part of my story wholly.