Inspiring Stories

Anne Marie's Story

“My journey all started about seven years ago after having laser surgery for a melanocytoma or “freckle” on my optic nerve.”

It’s been about two months since the surgery to remove the plaque from my left eye and in retrospect the most grueling part of this journey was the eight weeks between the preliminary diagnosis and the final diagnosis of choroidal melanoma, “CM”. The level of anxiety was unbearable at times, but I made it through with much support from my partner, family, friends, my doctor, and the individuals at the Eye Cancer Foundation. My journey all started about seven years ago after having laser surgery for a melanocytoma or “freckle” on my optic nerve. No big deal, I thought. The “freckle” was monitored every six months for six years with no change, until August 2006. It grew. Next was a trip into NYC for follow-up tests and a sonogram. My partner and I planned on staying in the city for the day, but after getting the preliminary diagnosis, I just wanted to get home. The ride home seemed much longer than the usual one hour. I was quiet and feeling very scared. “My goal is to save your eye, not your sight,” my doctor said compassionately. It kept repeating in my head. Then the thought of metastasis kept creeping in to my head as well. I don’t want to die, I remember thinking, I’m only 40 years old. I’m not ready. I cried some and asked for strength from my cousin, who had succumbed to cancer, five years earlier, she was only 54. Her cancer had metastasized to her liver and ribs after having had breast cancer a few years earlier.

I checked The Eye Cancer Network Message Board every day!

The countdown to my next appointment in 8 weeks started and I began researching CM. I wanted to read everything there was on it, but then I had to stop. Too much information, too fast, so I stopped reading, but I checked the Eye Cancer Network message board everyday and posted a message occasionally. What was most helpful was talking with two patient advocates from The Eye Cancer Foundation and knowing that I could call or email my doctor at any time. Relief arrived after the eight weeks were over and pre-op testing and the surgery was set. I felt so much more relaxed at that point and was looking forward to having the surgery and moving on with my life. I did not like waiting. For some reason, pre-op testing was easy for me, even the PET/CT scan. Both surgeries went well, and my biggest concern, anesthesia, was not really an issue. I was actually eating tempura, right out of recovery. Being somewhat isolated from others for seven days, wasn’t as difficult as it sounds, however staying away from my dogs proved more challenging. I was never in any pain, just discomfort, which is exactly what everyone had told me. Once the stitches began to dissolve, my eye became somewhat itchy, but not unbearable. The muscles around my eye had been cut, so they felt a bit tight. I was feeling good and wanted to return to work ASAP, I was bored. My eye was red, but there was no obvious swelling and no bruising.

Having support was the biggest key

Since the surgeries, the sight in my left eye has diminished greatly. I can still see light, shadows and movement, but no detail. That’s OK, I still have my eye, many people don’t. Having support was the biggest key to getting through these last five months. The support I received from the patient advocates, the staff in my doctor’s office and my doctor himself was immeasurable. The compassion, kindness and caring demonstrated by everyone is unheard of in healthcare these days. I feel very fortunate to have been treated by such a special group of individuals. Thank you.

Anne Marie