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Letters From Friends

 

We get a lot of letters from folks, but these are a few letters which may help you understand what people go through.

 

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I also was diagnosed with the same condition (only big tumor) two years ago and am very happy to see this website. The loss of an eye is better than the alternative. I have found it does pose unique challenges in activities where depth perception is an issue. I refuse to accept that I can't do something I did before, although my lack of acuity has had an effect on my performance for things like tennis where something comes toward you. When I was enucleated my physician gave me Frank Brady's book which helped to prepare me for some things. I believe something good can come from even the worst situations and greatly appreciate being alive today, now and for as long as I am blessed to be in this world.

Great Site!

It

Jay,

This is a wonderful site and resource for someone going through the experience of losing and eye. Like you, I am a very active 35 year-old man that had never heard of "eye cancer" before. I was actually riding my bicycle about a month ago, which I put a few thousand miles a year on, and noticed some floating vision in my right eye. The next day I noticed it more while I was riding again and contacted an Ophthalmologist the next day. He saw me a day later and saw the melanoma right away. He said I was lucky to have caught it because I had actually torn my retina, which was actually what brought me in to see him. The tumor was totally unrelated to my symptoms but wouldn't have been found otherwise.

I came back the next day to see his partner who was also a retina specialist. He confirmed the finding and made me an appointment at Wills Eye Hospital in Philadelphia a few days later. I used that time to do a little investigating. Fortunately I live in the Philadelphia area and I recruit physicians for a living so I know some reputable people to contact about where I was going and who I was seeing. I was happy to find that there really isn't anyone better to go in the country, possibly the world, for my treatment than where I was going.

I was somehow under the impression that my melanoma was small, possibly by the fact that my Ophthalmologist kept telling me not to worry and that I was going to be fine. I had learned from the eye cancer network website that for a small melanoma they typically radiate it and shrink the tumor, not a major ordeal. I was wrong. Carol Shields, MD and her team found the tumor to be 12.8mm, what they would classify as large, since it was basically half of my eye. The best form of treatment was enucleation. I agree with you, this is a terrible word. From the information I had gathered, if these people were telling me this was my best course of action, I was listening. I don't mind telling you that I am a former Marine and have seen some crazy things, this brought a tear to my eye, the one I was going to lose.

Later that week I had my surgery and it went pretty smoothly. You know, I guess I was a little preoccupied mentally, because I never really thought much about the possibility that they may remove the wrong eye by mistake. Maybe it was because at least six or eight people through the pre-op process asked me which eye would be removed. I had the operation on Thursday afternoon, February 15th, 2001 and went home the next morning. Fortunately its only and hour drive. I had dull pain in my right eye until about Monday. It was mostly caused when I would look at something with my good eye and my right would try to follow. Later that week I took a couple of short drives around the neighborhood in my car and a little more than a week after my surgery I was riding my bike again.

Its been a month since my enucleation and my life has started to go back to normal. I have been back to work for over two weeks (the first week from home) and have been riding my bike at least every other day for an hour or two. I tried riding my mountain bike on some relatively easy, wooded trails and had some difficulty with rocks and roots. That will take some getting used to again but I am confident I will be able to do it. I am looking forward to doing some racing again this summer and fall.

In the last six weeks I have had a couple of those "why me?" days. I already wear corrective lenses (used to wear contact lenses) so I had routine eye exams annually and just had one four months before my diagnosis. I wondered that if it had been picked up then would I have lost my eye? I didn't dwell on it long because it wasn't going to make the cancer go away or bring my eye back.

I have kept a positive attitude and have had wonderful, wonderful support from family, friends and colleagues. I don not see this as any kind of handicap and will be offended if others think I am. I am usually a pretty positive person anyway and I think that has helped. So far the biggest difference I see is some lost peripheral vision on my right side. That just means that my wife can sneak up on me more easily so I guess I will have to learn to turn my head more. I have missed a step on the stairs in my home a couple of times and have nearly banged my head on open cabinet doors. I am learning.

Your section on visiting the Ocularist will be helpful because I do that in a couple of weeks. I have been a little anxious about it and your experience puts it in a good perspective. I am actually really excited about it because I want to get back on with things. Getting rid of they eye patch will help me feel better about myself. It makes me think about one of my favorite movie quotes. If you've ever seen The Shawshank Redemption, Morgan Freeman's character tells us to either "get busy living or get busy dying". I prefer the former and have adopted that philosophy.

Your site is a great reference for people who have gone through this ordeal or are about to. I will be sure to recommend it to Dr. Shields when I see her again in a couple of weeks.

Sincerely,

David

Hi Jay:

I just had my left eye removed due to Cancer.

There's still a large opening which won't be filled in for approximately one year - Will graft skin from my stomach to fill it in. Meanwhile I'm looking for a good size patch to cover the opening. I also wear glasses - so I'm looking for something Flat so I can wear the glasses over it without falling off. Visiting Nurse is treating the wound with Wet-to-Dry Gauze Pads. Any information will be appreciated.

Thanks

Nice site, Jay.

I'm John. Enuc'd on March 18, 1999 at Wills Eye Hosp. I'm under the care of Jerry Shields.

I'm amazed at your words. How you function, that is. I can't say that I have had any complications but

I find the whole damn thing terribly annoying. The depth- perception issue is probably the worst handicap for me. I'm always knocking shit over! Anyway...thanx for the site.

-- John

 

 


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