LETTERS FROM FRIENDS (page 11)
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, Thanks once again for your web site. It was a great relief to find the Letters From Friends section and read that I am not the only person in the world faced with a decision of losing my eye or my life. Here is a tally of the last few weeks since I was diagnosed with Choroidal Melanoma in my left eye, and some of my thoughts and fears. Please feel free to post them on the web sight if you wish, either in whole or in part.
On September the 19th 2001, I went to my ophthalmologist because a few weeks earlier my FAA doctor told me at my age (53) and 33 years of commercial flying; I would probably need some distance correction for my next aviation medical exam in another six months. I thought he was probably correct in his evaluation and I had noticed some blurring in my lower left eye in the last few weeks. I thought some dirt or something I had gotten in my eye and caused some minor discomfort for a few days, may have even scratched my lens and caused some surface scare, which was now giving me some blurred vision. A little change of prescription on my glasses, a little suave for my eye, and my wife and I were off to lunch.
Soon my eyes were dilated and the normal vision test were completed and the nurse was about to cheerfully leave the testing room, I placed her hand to the lower left area of my left field of vision and informed her I if she would wiggle her fingers, I would not be able to see them move inside a space the size of an orange. After a few quick hand tests she said, "Oh, I'll go get the Doctor". This was the first red flag of what was shaping up to be a very bad day. Shortly the doctor was looking in my eyes with a very strong light and glasses, and informed my wife and I of a mass inside my eye. He said he could make an appointment with a laser specialist, and within two hours we were sitting in an examination room with a laser surgeon when he informed my wife and I of a Choroidal Melanoma in my left eye that was to big for him to operate on. My wife and I just looked at one another as I informed the doctor that I was an airline pilot. As we were leaving the office the doctor said he could get me an appointment first thing in the morning with a man who was a specialist in this type of CANCER. Thinking about total blindness and death due to an inoperable cancer as the only end was beyond belief. It was a very sad day, and a very long night.
On September the 2& 2001, my wife and I made our way through the early morning traffic to meet Dr. William Snyder. From this point the news for the next few days would slowly get better, or at least there would be some options other than dying from cancer. The first piece of good news we got was that this type of cancer was hereditary and was something formed just after conception and I had about a one in six to eight million chance of getting it, and this type of cancer will either show up in one or the other eye, or the pancreas, and most often during childhood. If it does not display itself during childhood, it will show-up after SO or so due to a lowered immune system because of the aging process. Also the chance for it to show up in the other eye is one in fifty to sixty million ( statistically not measurable ). After a few painless test that included a visual inspection, an ultrasound on the affected eye, a computer 3D image of the tumor, a fluorescein angiogram (dye injected through your arm that goes to your eyes and is then photographed with a very high powered flash camera ), the doctor was able to determine the size and approximate location. Later that day we once again met with the doctor and he was able to give us a general idea of the treatment. But first there were a few more questions that needed to be answered. The cancer was very close to the optic nerve so an MRI was set for the next day (an MRI of this type can show resolution down to 2mm ) to see if the cancer had begun to grow down into the optic nerve canal. Another big question was if the cancer had spread from my eye to any other parts of my body. This question was answered at least for now with a blood test, EKG, and two chests X-rays. After a few days of processing and anxious waiting, we returned to the doctor and got some long awaited results and news.
On September the 21st we got some good news. Our doctor and the doctor who is the MRI specialist were both waiting outside the MRI room and after some time the images were ready for reading, and the results showed the cancer was still 2mm from the edge of the optic nerve and did not appear to have traveled into the optic channel. This was good news.
On September the 24th we met once again with the doctor and got a much more detailed explanation on treatment options. The choroidal melanoma cancer was classified as a medium to small size (about the size of a pea) and had been growing for about a year. The blood test showed no spreading of cancer was active in my body, chest x-rays were clear, and EKG was good. Since the cancer was confined to the inside of the eye but very close to the optic nerve, and had not spread to other parts of my body, the choice of treatments was easier to define.
1) One type of treatment is called radiation brachytherapy (pronounced braketherapy) and is actually a small device that looks like a small coke bottle cap about the size of a wooden pencil eraser and has some very small radioactive pellets glued to the inside and a thin gold shield attached to the other side to contain and direct the radiation, this helps to prevent damage to surrounding tissue. This shield or bottle cap is sewn on the outside of the eye and left there for about 3 days, and then removed. In a perfect procedure this would normally give about a 90% success and the tumor might even shrink some over a few months, but vision loss will occur . In the cases where the cancer is very close to the optic nerve, the radiation shield has to be notched so it can be placed partially around the optic nerve. The problem with doing this is that the effectiveness of the radiation is not yet known, so there are no statistics on long-term success and survival. Additionally, due to the close proximity of the shield to the optic nerve, there was almost a 100% chance to lose all my vision in my left eye within a few months of the procedure and a 20% chance of eventually losing my eye within 5 years. Not really a place you want to be if you have cancer.
2) Another type of treatment is called enucleation. This is the medical way of saying eye removal. As unpleasant as this sounds it is a fairly simple operation, usually done under a general anesthetic, and has been one of the preferred methods for many years. During this procedure after the eye is removed, a pre-sized orbital implant (a porous ball that acts like your bone) is inserted in the socket and the muscles are stitched to it, and then a large contact lens is placed over it to act as a protection from the elements for the first few weeks and allow the doctor to view the wound and observe your recovery. This procedure has a 90% success rate for long-term survival, but loss of an eye is a scary thing, especially if you are an airline pilot.
The doctor said a decision did not have to be made that day or even during the next week or so, since this is a relatively slow growing cancer at this stage. My wife and I were thankful that a hasty decision did not have to be made. So for the next few days we had many discussions about the pros and cons of the two options, and also spent some time discussing a few other traditional and non-traditional treatments. My doctor was very helpful with all the technical aspects of the procedures and all the stats, he also discussed the case with his partner who participated in some of the long-term studies of this type of cancer, but he said the decision was totally up to the family. This seemed strange at first, but now I can understand his view. We spent much time talking to friends and explaining all the options, and much time in prayer. After a week or so we finally reached a decision. Since my vision in the left eye would be lost, and the chance of occurrence in the other eye is highly unlikely, and the cancer appears to be isolated to and in the eye, why not remove the eye? So on about the 8th of October we set the surgery for the 16th. At first the doctor said it would be a day surgery operation, since I was in good health and not too old, however after some thought about the operation and given our distance from the hospital, he was quick to comply with my wishes to stay in over night. This decision made the week of waiting a little easier.
On October 16th the drive to the hospital was a quiet one, but it was 5 A.M. and we had already been up for an hour. Check in at 6:00 A.M., completed check in by 7:00, change clothes and lie down on the rollaway bed at 7:15. After a few questions from the nurse and having a small red dot placed on my forehead over my left eye, an I.V. was inserted in my right arm and only produced mild discomfort. After a brief visit from the doctor it was off to the operating room. Medicine into the I.V. and out likes a light.
Next thing I remember I was in recovery, very little pain, mostly just some pressure on my eye. About 30 minutes later I was wheeled off to my room and into a hospital bed. I must say that the decision to stay overnight in the hospital was one that brought my wife and I a lot of piece of mind, even though it was not required. That day I was given some pain killer type pills, but I was still only experiencing a mild headache with an occasional higher level of pain, but very easy manage. Later that evening I received a 1/2 dose of morphine, which really knocked me out for the rest of the night.
On October 17th I was out of the hospital and on my way home with almost no discomfort. My wife and I were met at the house by my mother, sister, daughter, and friends, all were wearing eye patches. We had a good laugh and the rest of the day I spent walking around the homestead and talking to family and visitors. No real pain, an occasional pain pill did the job. That night before going to bed it was time to remove the patch and clean the area. It was a little of a shock to see the place where my eye had been for the first time. The affected area was dark red and gave the appearance of Arnold in the movie " The Terminator". After a few minutes I got over it. The good news there was no pain, just a numb feeling in my eye socket. Took a pain pill and slept all night.
On October the 20th I drove around the local neighborhood. It was a little scary but I had practiced it before my eye removal. I would suggest you do that before you become monocular vision, it will that some of the apprehension away. By the way there is no requirement in the state of Texas to be re-licensed to drive.
On October the 24th a follow up office visit to the doctor and all looked fine. The pathology report will be back in 3 weeks or so. A long time to wait, but the doctor feels good about the operation and seems to have reason to feel good about the pathology report. After all we caught the cancer early and had a good description of its size and structure. The earlier the better for cancer. Have not had any pain at all for 3 or 4 days.
On November the 6th got the pathology report back and all looks good. No evidence of cancer in the optic nerve. It was a very good day. No pain in the eye, now it is just a matter of getting fitted for my prosthesis in another three weeks.
On November the 22nd got fitted for my prosthesis. It is absolutely amazing, the prosthesis looks so real it is hard to tell which one is false, movement is very good, but of course not as good as my real eye. The level of self-confidence is much higher now that I can see the finished product. The fit is a little tight for now, but the fitting and finishing with take several visits. Overall I am quite happy and the whole procedure was painless.
Tom Grove
