LETTERS FROM FRIENDS (page 3)
We get a lot of letters from folks, but
these are a few letters
which may help you understand what people go through.
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 – Ed
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
Jay, I am so glad that I found this web site. One of my closest friends was just diagnosed with a choroidal melanoma in one of her eyes, and she is going to Miami Thursday to begin tests and treatment. At this point, they are not sure if it has spread, but we are all hoping and praying that it has not. She is only 28 years old, and she is 4 weeks pregnant. I emailed this website to her, because I know that all the web sites she has been to so far have been very scary and not at all promising. She needs to be inspired right now. He tumor is medium sized, and they said it was a large medium sized tumor, the largest that it could be and still have the radiation treatment to try to save her eye. She is now beginning to think more about enucleation, and honestly, I hope that she does go that route. I guess we won't know anything until she gets all of the tests back to see if it has spread. I know I am babbling, but I am so scared. Can I ask you, is it common for this cancer to begin in the eye? I am confused by much of what I have read. Some say that it can metastasize from somewhere else and show up in the eye, and some things say it can start there. Do you know, and I know you aren't a doctor, so I won't quote you on anything, but do you know if it is more common for this cancer to begin in the eye? She is a very healthy, young 28 year old woman, I just can't believe that it could be in her liver or somewhere else. I appreciate you taking the time to read this. As you can see I am terrified for her, but very hopeful, too. Thank you for being here for people to turn to during a very difficult time. You are an inspiration! God bless you! I look forward to hearing from you.
Thank you,
Lee Ann
hi!
it was so nice to discover this web site, I too have been able to adapt quite well to my one eye. I lost my left eye to a melanoma in the retina.
The prosthesis I now have sounds similar to yours although my implant is a bit different ,it's made of coral. Coral is a porous material which the 6 eye muscles were able to attach to. it has been really fascinating to have this artificial eye fit right in place and move as well as my natural eye did people are completely amazed to learn that it's a prosthesis I also was free of any kind of infection, I took it easy after the surgery, got lots of rest ,ate well and ensured that my immune system was in good shape ,maybe that helped. I was able to go back to work and continue with the courses I was taking but I did feel a bit stressed out. the whole situation made me nervous, I would have greatly benefited from this kind of shared info that you have initiated. it's also nice to know that I can share my story with others who may benefit from hearing that this type of surgery is really not as bad as it may seem at first I work as a nurse and one area that I still find a bit difficult is working with small instruments particularly when drawing up medication with a syringe and needle. things like trying to get the needle fitted onto the syringe, what I do is use the side of my hand to steady my aim( as you would rest the side of the jug against the glass) I would like to be able to use my role as a health professional to help people who are facing this surgery, this website may be a place where I can get started with that idea.
Geraldine
My daughter hurt her left eye on February 23rd, 2000. She was in surgery for over 12 hours while doctors tried to save her eye. They "put it back together", but several weeks after the surgery the eye (not open) looked as though it were sinking in. My husband and I took her to every eye clinic we could find, including Wilmer Eye Institute.
My daughter had her eye removed on July 17th, 2000 (her 7th birthday was on July 9th). She had to wait until October of 2000 to have her artificial eye made. She began the school year with no left eye. It did not bother her at all. She does wear glassed with polycarbonate lenses to protect her good eye. Her vision was perfect and still is in her remaining eye.
Everyone at school has been very supportive of her. She has been fortunate to have such a wonderful school environment. The new guidance counselor this year happened to lose his right eye at the age of 4 and he talked to my daughter about his artificial eye and helped her (she accepted the loss very easily, it was the making of the artificial eye that she did not like) prepare for the fitting of the eye.
Her new eye looks wonderful. She does have a scar from the inside of her eyebrow down around and out towards her cheek. Her safety glasses cover most of it and she is scheduled for laser surgery for the scar in October of 2001. That way, summer will be over and the surgery should be more effective ( not out in the sun so much).
I believe she has accepted and adjusted to her eye loss a lot better than I have. I am sure it has to do with her age. My main concern is her interest in sports. I bought her some safety goggles (Rec Specs) and allowed her to play basketball. Now she wants to play soccer. I asked her guidance counselor what he thought about her playing soccer. He said I should let her lead a normal life and not limit her. He said he participated in every sport he liked and I should let her do the same. I worry, especially with soccer, about her getting hurt. She won't be able to see anyone coming up from the left side. I really don't think soccer is a sport she should play, but I don't want her to feel like she should limit herself due to her eye loss. Do you have an opinion on this?
Dear Jay, My name is Amy and I too lost my eye to Choroidal Melanoma. I had enucleation surgery one week ago today at the Bascom-Palmer institute in Miami, Florida. My surgery went extremely well (so they tell me). I wanted to thank you for providing this website because I have been pretty in the dark about this. One of my options for treatment was to go to Boston and have proton-beam radiation. However, I am only 28 years old and I have a three year old daughter. I also found out three days after my diagnosis that I am expecting again. Needless to say this has been a difficult couple of weeks. I also felt that my best chance to beat this was to have the eye removed. I have been so worried about the cancer spreading to other parts of my body. So far my tests have all come back fine, but I know that is no guarantee for the future. Do you have any information of the incidence of spreading and survival rates? I would really appreciate any (good news) you could send me.
Thank you!
Amy
Dear Jay: I just found your web site and thought it was very well done.
My name is Linda. I am a 46 year who runs my own small business out of my home, have four children under age 11 and have a wonderful husband. I am a member of the PTA, a girl scout leader, a Sunday School teacher. I also have one more thing. A piece of coral where my eye used to be.
You see, one year ago this week I was at a Devils/Maple Leaf Play off Hockey game and one of the Maple Leaf players slap shot the puck from center ice, only it did not hit the glass as it normally does and did not defray into the audience. Instead it made a direct hit into my left eye. It completely lacerated it 90% around and crushed into tiny pieces all the bones in the orbital eye area and more and has done some permanent nerve damage to the nerves around the eye and down to my lips.
I was rushed from the arena medical facility to a trauma center, who could not handle this extensive injury only to be rushed again, via ambulance into New York City to New York Eye and Ear Infirmary.
I have had nine surgeries in the last year. The ninth being last Wednesday. The first was 4 1/2 hours in the middle of the night on the evening of the accident to do emergency repairs and stop bleeding and try to reinflate my eye and get pressure back into it. Surgery number 2 and 3 were back to back one and half weeks later to make another attempt at repairs - however it was at this point that they realized the true extent of the bones being crushed, into the nasal passage and the eye itself being non-repairable. Surgery 4 and 5 were also back to back two days later, the day before Mother's Day 2000. Four being the actual enucleation itself and the fifth being the replacement of crushed bone with plates and the placement of coral covered with the sclera of donor eye where my own eye once was and reconnection of muscles and veins to the coral. Surgery 7 was to add density to a sagging lower lid and add volume for aesthetics sake. Surgery 8 was to repair and shorten muscle in the upper lid because the eye muscles are not holding up due to damage and are almost closing the eye and finally, surgery 9 was to further do work on the upper lid muscles again. We do have surgery number 10 to look forward to but hopefully that will be the last for a while.
My face looks absolutely normal and outside the pins and needles sensation over my lip, I am fine. I too, go on with my life as normally as possible, understanding however, and appreciating the sight I have left in my other eye more. The joy of looking into my children's beautiful blue eyes and knowing I will see them graduate High School and College, see my sons hit a home run or even just strike out at their little league games and see my daughter wear a wedding gown. I watch them with new meaning to the words, growing up before my eyes or eye, as the case may be.
I am the typical definition of a soccer Mom - running here and there and transporting someone to this practice or that practice and keeping up with my home and my life, for it is still my life and I have a lot of living to do with it. I did not and will not crawl into a corner. I have no time for sympathy or self pity. My life is to full. I have faced this with humor and have tried to make everyone around me feel comfortable with this experience of life. I think if we all put our heads together we could write a book.
I remember the first time I went to make coffee in the coffee maker. Depth perception has its advantages at times you know! Not only did I miss, but I managed to give the floor a bath. Probably needed a good washing anyway! And as a woman, no one can tell you how to apply eye makeup when you need to close the eye your are applying it too - Well then, what happens when you close your good eye to apply the makeup and you have no sight in the other? Who knows where the eyeshadow may wind up! And when everyone is laughing or screaming at the 3D events at Disney World and you feel like a boob because you cannot see them.
Humor - that's how you handle it. For Halloween, I made an appetizer of eye balls. I took mozzarella balls, put them in a dish with tomato sauce (don't tell, I cheated and used Ragu) around them. Then I drew (with a toothpick), red lines on them (for veins) and put pieces of olives on them for pupils. No one missed the humor in it. Laughs were everywhere. It was a lot of fun. I also threatened having a Halloween party where everyone had to come as a pirate and wear an eye patch and then play 3D games. See how they felt! Timing prevented that from happening but that is still a possibility for the future. Humor has made everyone comfortable with this. It has given me an opportunity to express me throughout this entire ordeal.
As I have stated, your website is very well done. My story however, is different. The reason they used the coral implant was to prevent infections. Not that they are more common because of them. You see, the coral has my muscles attached for eventual better mobility. My veins actually are growing through it. This allows my own bodies white blood cells to fight any possible infection. I have great surgeons and wouldn't trade them for the world. It has been a long haul and we are not through yet, but they have been great. My oculist is considered one of the best in his fields. This certainly helps as well. It has over a year and I still do not have my permanent eye due to all the muscle surgery. My temporaries are pretty good though!
Don't get me wrong, life will never be the same. It would be a total denial of reality to say it was. It certainly could be worse. After all, I cannot change reality, so I must adapt and do the best I can with it. I was not killed, my kids were not the ones injured and I can go on.
Seriously, it does bother me when I am talking to someone and I notice they are staring at my eye rather than looking at me. Yet, I do understand this, as this is probably a new experience for them as well. I do not remember ever coming across anyone with an artificial eye prior to my own experience, and I live in the New York/New Jersey metropolitan area. So, despite the little things, I need to be able to live my life with changes and adaptation and above all -- with normalcy. What kind of example would I be to my kids if I did not teach them that life throws you curve balls, sometimes you miss 'em and sometimes you don't. But who you are in life and what you accomplish is as a result of how you handle the ones that hit you. So - that is my ongoing story...
Now for you, what can I do to help? I know there are those out there who need to hear that life goes on and without significant changes. There are many websites dealing with eye cancer. There are none dealing with losing an eye due to trauma that I have found. You are the closest to that reality minus a few modifications. Have you contacted the head of New York Eye and Ear AND the Head of L.A. Eye to ask about doing a biannual update for your web site? I look forward to you correspondence.
I lost the sight in my right eye when I was a child of 5 (now 43). The optic nerve is dead and glaucoma has developed which I control with Timoptic drops. I have not worn glasses to protect the good eye, but your information has been influential in rethinking that.
Thanks for sharing the information.
Dan
I just found your site and am very grateful for the upbeat and positive tone it shares with visitors. My right eye was removed one year ago after a diagnosis of malignant melanoma of the iris. It had caused severe glaucoma for a prolonged time so the optic nerve had also begun to atrophy. After 2 weeks I was driving, still with my clear spacer, waiting for the six week internal healing. My husband and I made up some fancy eye patches (fabric, painted leather etc.) that I also wore at times. Basically I costumed a lot, dressed it up and felt better about it. My prosthesis is beautiful, a true work of art, but it feels there all the time unlike my other eye. Playing with a ball really helped me regain depth perception (of my monocular type), speed of objects coming at me etc. Bouncing off a wall and catching is good as is bouncing off the ground. This tip came out of a fabulous book lent to me by my ocular oncologist. The title is; MONOCULAR VISION THE ART OF SEEING WITH ONE EYE. I'm sorry I can't remember the author's name but please read the book for handy tips, ideas, humor, and best of all positivism which he himself lives out as a commercial airline pilot. Right now I am a bit worried about the possibility of metastases. The ring type of melanoma that I had has a high prognosis of metastasis or recurrence. In most Scandinavian research on this rare form of melanoma ( only 0.04% of world population) both occurred in about 96% of cases and death was most common within 5years than the most common form of iris melanoma which rarely causes death. But faith, communication with other positively oriented individuals also going through it, and sheer ornery stubbornness are on my side. So please write to me anytime, the isolation of the last two very ill years is one of the hardest things to go through since by nature and temperament I am a very social creature. Cancer can be beaten, I know, I've done it before...at age 20 I beat ovarian cancer,31 years ago that was no easy feat. So I view this new one as a CHALLENGE NOT A ROADBLOCK. Besides I have so much to do: learn to drive a motor home with my one eye, using a professional teacher from the early retirement money the negligence suit will provide. So the silver lining is very evident to me and to my husband; we get to retire now, do all the traveling we want, visit our grandchildren in South Carolina, and have the time together to enjoy each and every day. What a blessing in disguise. Hope the best to one and all.
Ryta
Hi, I'm contacting you hoping you might know of an organization that could help. I am a case manager with a patient who has lost one eye to cancer and has tumor near optic nerve for his remaining eye. Radiation therapy is scheduled to begin next week on this tumor. Treatments will be 5 days per week for 6-7 weeks. The treatment center is approximately a 2-1/2 to 3 hour drive from patients home. The clinic has recommended patient stay in the area of the hospital during the weeks of treatment. The problem is the cost of doing this. Many cancer organizations have funds available for just such situations, i.e. one time $750 for transportation costs for treatment, or partial assistance for temporary housing such as my patient needs. I have been unable to find any organization with funds available for eye cancer patients. Are you aware of any help?
Thanks so much!
********************
Here's a message I got from a contact that might help:
For starters feel free to have them call the National Cancer Information Center in Austin at 800.227.2345 and make sure they ask for a Cancer Information Specialist. You have to be there a year and pass several certification exams to be a tiered CIS. Or you can e-mail me (I'm lit above) and I'll give you my personal line and he/you can call me.
Off the top of my head here are your answers. Please understand I am not at work with my computer on and the ACS databases at my fingertips so I'm flying by the seat of my pants. But I've done this for 15 months and know this stuff by heart.
For FREE lodging he can try http://www.nahhh.org and they will provide a list of lodges/hotels/motels across the nation that offer a free/reduced cost place to stay.
For transportation he can try http://www.airlifeline.org and he'll probably be able to find private pilots who can fly him there and back for free. Commercial airlines like Southwest, American etc fly greater distances, but private pilots or company pilots usually fly short distances.
The ACS also has a program called "ROAD TO RECOVERY" where volunteers will drive patients to and from appointments. However, with the distance involved it is unlikely. So his best chance to request MILEAGE REIMBURSEMENT and we can cut him a check to cover gas if he sends us his receipts. It's not a solution, but with gas prices like they are (thanks to EYES =P ) it will help some.
For $$$$ assistance he can try http://www.cancercare.org or call them at 1 800 813 HOPE and they can give him tons of financial referrals.
Please call me....or have him call me tomorrow and I can offer many many many more resources when I have some time to really hunt and peck. Hope this helps amigo. God bless you.
