Vancouver (Addendum)

The die was cast back in March 2003 that has led to the decision I made today: sacrifice my eye for the sake of my sanity and life.

Although I am not unscared of losing my eye I am more afraid of continuing this fight, this losing skirmish, with a cancer that has already taken so much from me.

I will sacrifice my eye to fight another day, should I have to fight again.

My eyesight is almost totally gone from my left eye. I have migraine-like headaches that, although cannot be directly linked to my eye, are located in my left forehead, above the eye, a migraine-like pain that has no other migraine symptoms other than the pain I feel. Maybe with the eye gone I will become more pain-free, closer to living a more normal life, and without the freaky wandering, lazy eye I have now.

I had a nice meeting with Marie, of the artificial eye clinic, and am more aware of what can and can’t be done, the healing times after my surgery and how the artificial eye is crafted and my eye socket prepared for the eye. No one will know but me. This offers a strange sort of exzcitement. And they do custom work, so I can get anything painted on the eye I don’t just have to have a pupil in place.

My surgery date is set and I have everything I need to prepare myself for this next step, enucleation.

Wish me well!

  1. I had been waiting for your update since April. I found you site after my son was diagnosed with OM. I hope all goes well with your next step and that you find relief from migraine.

  2. Hi eyewishuweell, I hope that this type of cancer has been well explained to you and your son. Who is his doctor? Are you in BC?
    I would really appreciate more information and if you have any questions, consider this site your new search engine.
    Thanks, Rob.

  3. Our Doctor is Dr Char in Calif. Son will have proton therapy in two weeks and then follow-up. Is there a way to contact you more directly/personally?

  4. Hi Rob.

    Thank you so much for making this website. I’m so sorry to read what you’ve been going through. It seems after all this time, you wound up having to have your eye removed anyways.

    I was just diagnosed with OM last month (it started as a Nevus in 3/2010). Unfortunately, the doctor didn’t (nor was I wise enough) to come back sooner to look into the problem. I only came in to see the doctor because I started to get headaches and the central vision in my left eye is gone. The unfortunate part about this is that in a little over 1 year, it has grown to over 6mm thick; quite fast according to him.

    I’ve just been accepted into MD Anderson in Houston, TX. Dr. Gombos (a really nice guy) has recommended 1 of 2 treatments; removal or proton therapy. From the sounds of it, it sounds like I should just cut to the case and have my eye removed. I’ve grieved so much, that I’m over it now. How and when is it possible that someone can accept that they’re going to lose their eye…. crazy. It sounds like you’ve had to go (and are going) through this process.

    I’d certainly appreciate any info you have. Researching this has been a pain in the rea…. eye considering there aren’t many people out there who also have this issue.

    Le sigh…

    Hope to hear from you and best wishes.
    Kurt

  5. Hi Kurt,
    If I had to do it again the only thing I would have changed is forcing the issue of the growth in my eye being decided as a cancer tumor earlier in the three years I was being monitored every three months before my doctor decided that the tumor had the characteristics of cancer. Since there is no real way to test for cancer without destroying the eye we all wait for the tumor to be “profiled” as cancer.
    I am only sorry that a second tumor appeared which has forced my decision to lose the eye. Even with less that 10% of my peripherial vision remaining I would keep it if I could.
    I would opt for the proton tradiation surgery again if I could, indeed, it was an option I discussed with my doctor before I opted for removal. I have lost this battle, I will not lose any more.
    Keep your spirits up, life is infinite.

  6. Hi Kurt,
    I want to add that when you’re being prepped for the proton laser treatment, you have a surgery where they place the markers around the tumor so they can effectively aim the protons. One of the hidden benefits of this is that it’s the first time your doctor will be able to actually see the tumor. No pictures, no ultrasounds, eye to eye, if you will. As I said earlier, they do not biopsy the eye.
    When I has my surgery for being prepared for the proton treatment an older lady was also scheduled for the same proton laser treatment. During the prep surgery the doctor saw that the tumor on her eye was not cancerous. She did not have cancer!
    Had she decided to have the eye removed instead who knows what might have happened.
    I felt it important to relay this story to you, it may not sway you one way or another but it is relevant additional information for you to think of.

  7. That’s really awesome. I wonder what they could see (or not see) that allows them to visually determine whether or not it’s cancerous. They used some odd-ball camera on my eye that takes 3d shots of it so that they can rotate and take a look at the tumor in the back of my eye.. along of course with angiograms, ultrasound, and traditional pictures.

    I’m currently going through a battery of tests (xray, cat, mri, etc) in other portions of my body so the doc can get a baseline (assuming the would-be cancer) started in the eye.

    The problem with doing the proton therapy is that, according to my doctor, the only place in the U.S. I can go to is Massachusetts Hospital in Boston. That’s one heck of a trip without any resources for myself and family to stay there. For better or worse, I think I’ve already psyched myself out for accepting the loss of an eye.

    This isn’t the first thing I thought I’d have to think of a year ago…

    Have you found out anything with regards to your liver? You mentioned some lesions in a prior post.

  8. Hi,
    I have some new pictures that will look much llike yours, maybe they will have some comparitive value. I hope to post them soon.
    The issue with determining whether the tumor is cancerous or not is rather complex. It relies more on the doctor’s experience with the various types of melanomas of the eye than anything else. A biopsy of the eye cannot be safely done, I believe, so it’s pictures, ultrasounds and looking into the eye by an experienced opthalmologist that makes the difference in the diagnosis and the treatment, in the present and future.
    I would try my best to not rule out the proton radiation procedure. I am lucky enough to live in Canada where the cost of such treatment is an insured medical procedure. My proton radiation treatment was performed at Triumf, http://www.triumf.ca/ which is part of UBC in british Columbia. Do your research to look for funding and grants for your trip to Boston, I would think that your local cancer agency would be able to help you.
    As far as the lesions on my liver they were the same clusters of blood clots seen 5 years earier but it was a hell of a scare when the possibility of any of them being liver tumors.
    Please go through the links found in the right column to get you started looking for advice.
    I wish you all the best.