When a Doctor Couldn't Look Me in the Eye to Tell Me My Diagnosis
I drove to the ophthalmologist’s office in a state of controlled emptiness, a mental blankness that felt nothing like panic and more like a deliberate choice to interact as little as possible with my own emotions. I’d been in and out of so many hospitals and doctors’ offices and imaging suites by that point that I didn’t honestly think an answer would be coming that day, either.
I certainly didn’t think anything was wrong in my eye. After all, it was my legs that were numb. Nothing was wrong with my vision. But I endured seven sets of dilation drops and gamely stayed still with my head in the examination rig and tried not to blink as the doctor bored into my left eye with his bright lights and crowded into my face with his loupe.
Then the ophthalmologist muttered to himself, loupe still in hand, that hand still propped on my face and whisking back and forth as he flicked the light toward the deepest angle of my left eye, “Huh, yep. Melanoma. Choroidal. Yep.”
I’d like to say that I felt the world fall out from under me. But I’d been through so much in the previous two months that I simply thought, “Did I hear that right?” And I expected him to move the rig aside, push back on his rolling chair, fix me with a mournful look, and tell me I had cancer.
Instead, he left me sitting there, pushed back on his rolling chair, stood up, walked to the door of the examination room and opened it. Sticking his head out, he called to his staff, “Hey, get in here. You need to see this. Choroidal melanoma. You won’t see another one like it.” As an afterthought, his hand still on the door knob, the doctor turned to look at me. I could barely see him past the bars and dials of the ophthalmology exam set. He asked, “That’s all right, isn’t it?”
I know the expression on my face had to be as empty as the feeling in my chest. A tiny burst of emotion tried to well up in me, like a worm poking its head above ground. That emotion was the tiniest thread of white-hot rage.
This supposed professional couldn’t be bothered to look me in my good eye and tell me I had cancer.
Instead, I had become an instant curiosity, a freak of nature, a walking example of something he’d only ever seen in textbooks.
Cancer is, after all, as common as dirt. But all forms of ocular melanoma (OM) combined occur –at most- six times in a million people. It qualifies as a rare disease even by America’s standard of 8,000 cases per year, and OM has fewer than that many cases annually worldwide.
But I didn’t know any of that then. All I knew was, the form of cancer that had apparently invaded my left eye was so rare it could make a doctor completely forget I was a human being.
Two women shuffled into the room, looking shamefaced at the floor. And I realized I had a choice: be angry, or let my affliction achieve some good. Let them look, I thought. Because if their being able to recognize it saves someone else’s life, it’s worth it. The rage didn’t dissipate then—and it still hasn’t, three years later—but I learned to view it as unhelpful, as an impediment to my own health and others’ ability to care for me.
As terrible as it was to find out that I had cancer the way I did—as terrible as that doctor’s bedside manner was—it taught me two important lessons that I would need in the coming days.
The first lesson: This disease was so rare that I had little choice of where and by whom I would be treated. Most doctors wouldn’t even necessarily recognize OM for what it was, let alone know how to treat it. I had been sent to this doctor by a neurosurgeon (an already pretty special specialty). Then this doctor promptly sent me to a second ophthalmologist for another opinion that same day. I was in such strange and rare company with this disease that I would later discover there was only one doctor in the entire state who treated it. Many states have no OM specialist at all. I would later end up traveling to another state entirely to participate in a clinical trial.
And the second lesson: This disease was so aggressive that the only person who could care for me emotionally was me. In their haste to deal with my OM, few healthcare professionals could give a second’s thought to how I, the patient, was doing. In the following six weeks, I would go through multiple eye appointments that lasted upwards of five hours each, a PET/CT scan, two eye surgeries, and a week of implanted radiation in that same eye, all of which required hours of highway driving.
Very few people asked how I was doing. They didn’t have time.
All my appointments were shoehorned in on people’s lunches, or were end-of-day—I often walked out to empty parking lots alongside the people who’d examined me. The situation was that desperate. In the week between the final measurement of the tumor in my eye and the surgery to cap it with radioactive iodine, the tumor grew another eighth in size.
No one was taking the time to check on me, the person, because they were literally working through exhaustion and hunger to save me, the body.
So I owe that terrible doctor my thanks. His words were the key to understanding everything about the disease I had, and the experiences it brought me: “You won’t see another one like it.”