One morning in 1999 I went to my optometrist for a routine eye exam. It was time to check the strength of my glasses and contacts. With my pupils uncomfortably dilated, Dr. Randall Teague peered into the depths of my right eye. He looked into my left eye for a quick moment, then looked into the right again. He looked for what seemed like a very long time, since he was shining a light directly through the pupil onto the retina.
“Has anyone ever told you that you have a freckle in your eye?” he asked.
I was a little startled. In fact, my neurologist had asked the same question when I was last in his office for a visit for my migraines. I told Dr. Teague this.
“You need to see a good ophthalmologist,” Dr. Teague said. He turned and reached for a phone book. “I’m going to call to make you an appointment.”
This was certainly an unusual thing to happen during an eye exam, I thought. As I sat in the darkened room, in the exam chair, I watched as Dr. Teague called the office of Bill Mabrey, a very respected Little Rock ophthalmologist, and asked to set an appointment. “She needs to be seen this afternoon,” he told the person on the other end of the conversation. I began to worry.
“Why this afternoon?” I asked. I had other plans for the day, but Dr. Teague exuded a sense of urgency.
That afternoon I went to see Dr. Mabrey, who, coincidentally, was the son of my in-laws’ neighbor and close friend. Over the past ten years I had heard of Bill Mabrey’s professional progress from his mother, who loved to talk about how well he was doing and the awards and recognition he received as an extraordinarily accomplished ophthalmologist. I knew that he was the best in Little Rock.
“You have a choroidal melanoma,” he told me that afternoon. He explained that the “freckle” in my eye was similar to a mole on the skin. It was essentially a growth of pigmented cells in the part of my eye just behind the retina. Some people have small “freckles” in their eyes, just like they have freckles on their skin, and there is no problem. When the freckle grows, though, it is considered to be a malignant tumor that has to be removed surgically.
Only 5 in a million people have choroidal melanoma. That means about 1200 people in the United States have this condition. It is rare. And it is scary as hell.
The choroidal melanoma can metastasize, or spread to other parts of the body, usually to the liver or the lungs. Aggressive action to eradicate the tumor is necessary to prevent the spread of the melanoma. Usually this means the patient loses the affected eye. It is removed to prevent the melanoma from spreading. “You will most likely have to have your eye removed,” Bill Mabrey told me. My world rocked.
I have always had a fear of blindness. When I was first given glasses at the age of 9 I was told that my eyesight would continue to decline. “How bad will it get?” I had asked the eye doctor. He replied, “Oh, eventually you’ll go blind.” He thought I understood he was kidding. I didn’t, and it wasn’t until several years later that I came to understand his remark to be flippant. But in the meantime, I was sure my eyes would soon fail me completely and I would be in a world without books, without sewing, without the fine details that I loved to give to things.
More than anything else, I use my eyes. I read. I write. I sew. I make miniatures. I cannot possibly imagine life without eyes. I can lose my hearing and be okay. Yes, I love music and movies, but losing hearing would only handicap me. Losing my sight would make life much less worth living.
The fear of blindness that had permeated my childhood and adolescence came roaring back into my life. It arrived with a powerful blow and knocked me senseless. I didn’t hear the rest of what Dr. Mabrey said, but as I left I was told to make an appointment to have an MRI done on my eye.
The only place in the state that had the equipment to do an MRI on my eye to determine the size of the tumor was the University of Arkansas for Medical Sciences (UAMS), which is located in Little Rock. Pursuant to instructions from Dr. Mabrey’s office, I called for an appointment. It would be six weeks before they could fit me in. I made the appointment.
The next few weeks were hell. This was the second time I had been diagnosed with a cancerous condition. Jack was three years old the first time. Now he was eight. The notion of this cancer metastasizing terrified me, not so much for me but for my son. My dad had lost his mother to leukemia when he was a teenager and never recovered from the blow. I didn’t want this to happen to Jack. I was 36 years old. My grandmother died at the age of 39.
I walked around in a daze. Depression hit me hard. I spent a lot of time just going through the motions of life. Going to my law office, going home, making dinner, sitting in a daze waiting for the next blow to fall. I couldn’t concentrate on anything. I spent a lot of time just staring into space. Blindness, a cancer metastasizing, the possibility of my child growing up without his mother. I couldn’t even cry. I was numb.
It’s hard for me to write about those months of my life. Even now, nearly a decade later, I can’t think of them without tears. That time was easily the lowest I have ever been, and I’ve had plenty of lows.
My sister, Susan, recognized the fact that I couldn’t function. My husband didn’t – I think maybe he was too close to the situation himself to take action. My sister, though, didn’t hesitate.
Susan researched the diagnosis. She started making phone calls. She found that there were five clinics in the US that treated choroidal melanoma. One of them was at the University of Tennessee in Memphis, just a two hour drive away. When she told me she had found the clinic, she joked that she had hoped we’d have to go to New York, where the shopping was better. I managed a smile. I was so numb I really didn’t care.
Susan got me an appointment at the clinic in Memphis for two weeks later. She cancelled the appointment at UAMS and got the records from Dr. Mabrey’s office. She was ready to drive me to Memphis when a few days before the appointment my husband said he would take me.
Ophthalmic oncology is a tiny subspecialty within ophthalmology. There are approximately 147 ophthalmic oncologists in the world. Getting a second opinion would be virtually impossible, and would most likely be done at my own expense. It wasn’t practical. If the ophthalmic oncologists at the University of Tennessee, which was also associated with St. Jude Children’s Research Hospital in Memphis couldn’t save my eye, it wouldn’t be saved. (Remember the plugs actor Danny Thomas used to make for St. Jude’s on television? He founded the hospital.)
That day I waited in the crowded reception room with about 40 other patients. Not everyone had the same problem I did. There were some who were blind, some who were obviously frail and feeble, and others who appeared just as healthy as I did. After what felt like a lifetime my name was called and I began a series of tests.
After an ultrasound of my eye, photographs of my retina, and two doctors peering through the enlarged pupil of my right eye, Dr. Barrett Haik told me that the spot was most likely malignant and that there were just a couple of options for treatment. One was that my eye would be removed and I would get a glass replacement. If the second option didn’t work, that’s what would ultimately happen anyway.
The second option was a radical new procedure. A tiny laser beam would be aimed through the clear pupil of my paralyzed eye and the melanoma would be burned to a pile of ash. The blood vessels feeding it and helping it to grow would be cauterized by the laser, too. The procedure had rarely been done before, and never by Dr. Haik. However, Dr. Matthew Wilson, his associate, had seen it done. It was experimental. If I did it, I might still need to have radiation treatments on the eye. Despite the laser and radiation, I might still lose my eye. Was I willing to try it? I shrugged. Sure.
It could not be done that day. The doctors would have to get the necessary equipment from St. Jude’s. I should come back in a month. New measurements could be taken by ultrasound and by photograph at that time to confirm that the spot was malignantly growing inside my eye.
I was still numb. When Skip and I explained the options to our families, the consensus was to go for the laser surgery. I was still in such a state of shock and denial that I couldn’t pick up the phone to call for the appointment. My sister came to my rescue again. She called the office in Memphis. I had an appointment to have the surgery.
This time the reception area at Dr. Haik’s office wasn’t as crowded and I was ushered in almost immediately. The pupil of my right eye was dilated with drops. Measurements were again taken with the ultrasound and the photographs. I was seated in an examination chair and given a painkiller.
The team knew what they were about to do to me would hurt and they warned me it would be uncomfortable. Still, I was unprepared for the excruciating agony of a paralytic agent being administered to the muscles around my eye by a hypodermic needle. The shot and the searing agony seemed to go on forever. When it was finally over I asked if it was a boy or a girl. I hoped, for that much pain, I had a baby girl to show for it. Jack was, alas, still sibling-less.
While they waited for the paralytic drug to take effect, Doctors Wilson and Haik talked and joked with me. I have never met a doctor whose bedside manner was better than Dr. Haik’s. He was constantly patting my hand and arm in a fatherly manner, soothing me with his soft voice, and putting me at ease with every word. He explained each step thoroughly.
He was also honest about the fact that he had never attempted the procedure he was about to perform on me. Dr. Wilson had done it, and would be supervising him. The two medical men readied the laser and talked with me and each other about what was happening. Dr. Haik bent over me and aimed the light through my pupil onto the part of the retina where the melanoma was bulging through the choroidal layer of my eye. As soon as he was confident of his aim, he activated the laser. I felt nothing.
For several minutes he directed the laser into my eye. He explained that he was burning not only the melanoma itself, but the blood vessels that were feeding it. Cauterizing those vessels was paramount: if they could still deliver nourishment to that tumor, the spot would continue to grow. All the cancerous cells had to be eradicated.
At last he was finished. He moved aside and Dr. Wilson took a look. He readied the laser and burned a little more of the area. Still, I felt nothing. Dr. Wilson backed away and removed his mask. “I think we got it all,” he grinned. I smiled with relief. It was probably the first time I had smiled in over two months.
Four weeks later I returned to the clinic for a checkup. The tumor wasn’t growing. There was just a mountain of ash where it used to be. I had a blind spot in my vision where the laser had seared the retina and damaged it permanently. A small black spot in one corner of my vision is such a small price to pay to keep my eye. Nine years later, I don’t even see it. In fact, even when I look for the blind spot I can’t find it. (I guess I’m blind to it – right?) My brain has compensated for the small gap in my vision.
I now go to Memphis once a year for a follow up exam. Last year Dr. Haik was on sabbatical and I really missed seeing him. Dr. Wilson was there, though. I adore these two men who saved my eye.
When I came across a story of a small boy who had eye cancer, and who has a gift for something else special, I decided to share this story with you. I hope you find inspiration in it. I did. I found the courage to tell you about one of the darkest periods of my life.