Metastatic ocular melanoma, how it changed my life by Ellen August 3, 2001

In 1984, after going through a long and bitter divorce ending in a jury trial, I finally found a decent job and started to enjoy life again. It was then that they found the melanoma tumor in my left eye. I was given a choice to have my eye removed or treatment with a radioactive plaque. I chose the plaque because the doctor told me that removal of the eye itself could cause the cancer to spread.

I was never told the severity of the cancer and back then, there was no Internet to do research. I knew nothing about ocular melanoma and metastasis. I am not a person who likes to go to doctors but I went back for check ups once a year for ten years. Thinking I was cured, I stopped going to the specialist but continued to see my ophthalmologist on a yearly basis. I had no problems other than some muscle damage that made looking in certain directions a little difficult.

Then in January of 1998, I went to the doctor because I was having a lot of pain in my right side around my ribcage. Thinking it was my gall bladder, I was fearing having to have surgery. The doctor sent me to have an ultrasound and they found a large tumor on my liver. I had the biopsy and they confirmed it was melanoma. When the doctor told me, he looked at me like it was a death sentence. My sister was there with me and she started to cry. I was very calm and saw it as a challenge. I never thought I would die. This sent me on a spiritual journey. I am a metaphysical person with a strong faith in the universe, God, spirit or whatever you want to call it. I read everything I could get my hands on and felt I could heal myself. I immediately changed my diet and did not return to work as I was still in pain and trying not to take the pain med., MSContin (morphine). After a lot of thought, I decide to see if surgery was a possibility and went through all the test to make sure it had not spread elsewhere.

I was lucky, nothing showed up on the tests. It was then that the doctors told me what my chances were and for the first time I realized I might die. My prognosis was poor and given less than a 20% chance to live for five years. I still felt deep inside that it was not my time to go and so I put the doctor's prognosis out of my mind. I was and still am determined to prove them wrong.

I went through the surgery where they removed 55% of my liver, gall bladder and part of my diaphragm. I refused to have anything else done because of what I had read about the poor success of the treatment options and I wanted to enjoy the time I had left. My doctor found the melanoma vaccine study going on in Philadelphia the day I had my surgery and sent them my tumor for the vaccine. At first I refused but she was very persistent in telling me that it went along with my beliefs in that the vaccine works with the immune system. It was also very expensive and my insurance wouldn't pay for it. Not sure what to do, I turned it over to the Universe and a couple of nights later, I got a call from a friend of mine telling me they were putting on a benefit for me to raise money for the treatment. There was my answer. I was able to go through the treatment and fly back and forth about 10 times. The doctors there gave me about 6 to nine months to live. When I went for my last vaccine, I asked the doctor about the others in the study and he said there were only 5. Two had died and the other two had already had tumor regrowth. I then told him that I planned on being around for a long time and he smiled at me. He is a wonderful and caring doctor as was everyone else at Thomas Jefferson University Hospital.

Since then, I have moved from a very negative place to a small but sunny and beautiful house, I have quit my job, which I had been very unhappy at for several years. I am in the process of starting a new career, one that I can be happy at. I eat a healthy diet, although I do slip once and a while, but not often.

I meditate every morning and thank God that I am still alive and healthy. I now take time to enjoy the little things in life such as the birds, flowers, clouds, sunsets and sunrises. I want to give back to the universe what has been given back to me, and I try to find ways to do just that. My surgery was two years ago on March 10th and I am beating the odds every day.

-- Ellen