In April of 1990, I was just completing my Master’s degree in Music Therapy, getting ready to defend my thesis. I worked full time as a Music Therapist with emotionally disturbed teenagers in West Palm Beach Florida and commuted to Miami for graduate school.
I got sick and went to the doctor, it was the flu. But a very sharp nurse asked me why my left eyelid was drooping. I explained I was exhausted between school and work. She shook her head ‘no’ and looked closer and saw a lump, like the end of a pencil eraser protruding out from under my eyelid. She asked me how long that had been there. I said I had noticed it putting in mascara, but it really didn’t register to me as something different. There was no pain, but as I looked back, I kept blowing contact lens out of that eye. The eyeball had started to protrude. The nurse sent me to an ophthalmologist who treated me for infection of the eyelid. No change with antibiotics so he sent me to have a MRI. The MRI showed a tumor encapsulating the lacrimal gland.
Then it was off to a surgeon who removed the tumor in May of 1990. The surgeon said that it was probably benign, said he may have to take the eyelids. This really frightened me. I was 32 years old and my grandfather had lost an eyelid to skin cancer. All I could see was the disfigurement. I did under go the surgery and the tumor was removed. He did not remove the eyelids. I went on with life, defended my thesis and received my degree.
It was the beginning of July when I received a call from the plastic surgeon to come in for the results. The surgeon told me that it was ACC Lacrimal Gland. He said I had to go see a doctor in Ft. Lauderdale and he had made an appointment for me that afternoon. Needless to say I was in shock. My parents and I went to see a Doctor in Miami. He did not pull any punches! He said I was case 80 documented in the world and the eye and the whole orbit had to be removed. I had been fretting over eyelids, now I may have to lose it all.
On July 11, 1990, after a successful 9-hour surgery, I had lost my eye, the orbit, muscles, bones, and the optic nerve back through the brain. The surgeon was able to get clean margins. There was no other sign of cancer. I had regular CT scans, as I can no longer have MRI due to the metal twist-ties holding my skull together, for 5 years. Every scan came out clear. I was given a clean bill of health in 1995, and threw one heck of a party!
It is now 2023, and I am almost 33 years out, with no recurrence and no metastasis. I credit my surgeon for having the courage to get the cancer out and my lifestyle changes to stack the deck in my favor. I believe that we are responsible to do our best to stay healthy.
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On behalf of ACCOI, we want to thank Alder for sharing her story! If you would like to be featured on our newsletter or social media, please email caitlin@accoi.org.
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