My Ocular Melanoma: Rob’s Story

Today I received the results of my last MRI. The scan confirms the initial diagnosis of ocular melanoma. My next series of appointments is September 19 in Vancouver. I will visit the Eye Care Center and go on to visit the BC Cancer Clinic. My hope is that the cancer has not spread, that the 2 Avastin treatments have had some effect on the tumor. I’m not sure what to do from today until September 18. Any suggestions?

I guess now I am just waiting for the final confirmation that the cancer has not spread to my liver, which is usually it’s first stop if travelling. This leaves a very strange feeling to one’s self. I know that many have had this feeling. What is next?

I am fortunate that I have the life and lifestyle that I have. My business is sound and I basically work from home. I have  a wife that loves and supports me, although I can only imagine what is going through her mind right now. This is not the time to let moments escape with unsaid words.

Tomorrow, I hope I have one, will be another day. One day closer to confirmation stage 2.

Lord, please give me lots of tomorrows.

The past Friday I had an appointment with Dr. Hopp, my opthamologist. He’s great. Without his care and the personal service of his staff I would have had a much harder time of all of this. After an examination of my eye Dr. Hopp told me that the fluid behind my eye appears to have diminished a little. Me, being the perpetual ’sounds good to me’ guy paid that comment no heed. Until this morning, Sunday. Today I didn’t wear my eye patch at all. Now, the left eye still has almost no central vision and limited periferal vision and that’s why I’ve been wearing the eye patch for almost 2 months regularly now, it reduces the strain of seeing clearly because the brain isn’t fighting over what the good right eye and the bad left eye are telling it that they see.

But I have to tell you, although there is no obvious improvement in my left eye’s vision, today I had none of the regular depth perception difficulties, none of the blurring, strobing and occassional feelings of vertigo.

Has the time with the eye patch on helped to strengthen the right eye to a better command of the optic signals?

Has the last Avastin treatment had some effect and reduced the fluid and the growth behind my eye?

Are my prayers and petitions being answered?

I believe that it is all of the above.  And that there is hope. I’m not worried about the big ‘C’ anymore.

Other aspects of the change in my vision that appeared have varied over time. My left eye retina became ’swollen’ and quite stretched and wavy due to the growth behind my eye. This change in its size and the way it transmitted light has caused headaches, a feeling of vertigo, tiredness, nausea and of course, poor vision. I have had several treatments to either reverse the deterioration of vision and to stop/hinder the growth of whatever was behind my eye. 

Since I was first diagnosed with ‘macular degeneration’ based on the fluid/growth behind my eye, I had two photo dynamic treatments which is where a light sensitive fluid is injected intravenously into your arm and the eye is subjected to a cold laser which activates the drug and destroys the abnormal blood vessels that are causing the macular leakage. These treatments were not successful. The PDT treatment leaves it’s photo-sensitive drug in your system for about two days. You have to stay out of direct sunlight and allow yourself no brighter light than a 60 watt bulb or your skin may burn. Just like a vampire. Well, actually more like getting a very serious sunburn from which your skin may not heal because the drug allows your sensitivity to sunburn to a great depth of skin layers quickly. 

For your PDT treatment follow your doctor’s directions closely and don’t go into the sun for about 3 days. I also had three treatments of Avastin. Avastin is a cancer drug that is used to treat colon cancer mostly. The drug is injected directly into the colon tumor in an attempt to kill off the blood vessels surrounding the tumor which also causes the tumor to die. Avastin works well with colon cancer having a great success rate but unfortunately did not help me at all. The Avastin drug is injected directly into the growth behind the eye. Not an easy operation for the squeamish. Luckily enough for me I have a great family doctor that supplied me with a mild sedative and a very gentle ophthalmologist who knew how to administer the treatment with the greatest of care and a minimal amount of discomfort. 

Other symptoms (maybe) that have occurred include a facial twitch that started in March 2006. I could feel the twitch at the corner of my left eyebrow and at times it went from my eyebrow to the left corner of my mouth. It was often accompanied with a feeling of numbness on the left side of the face that felt like getting a freezing shot from the dentist. When the twitching started it would last anywhere from 30 seconds to over 5 minutes. It was enough for me to feel it but not enough that it was a visible twitch. Over time the frequency has subsided to the point now that it happens only a couple of times a day. The numbness of the left side of the face has also subsided.

I saw a neurologist about the twitching and numbness sensation and after a couple of months had an MRI. It was inconclusive although there were other abnomolies that are being watched. Two weeks ago I have a more extensive MRI done and should get the results this coming week.

Today I am one month away from yet another visit to Vancouver BC for yet more tests to confirm or not if this is indeed cancer. 

I’m getting used to the wait and see timeline of dealing with my loss of vision.

I had to stop and think about the odds of getting this particular type of cancer. 6 out of one million people will be diagnosed with this cancer in any given year. Canada has a population of almost 30 million.
 30 X 6= 180

About 180 people in Canada will be told they have ocular melanoma in the next 12 months.
 In contrast you have one in a 14 million chance of winning the 6/49 lottery. You have a better chance of losing your vision, and eye, to this cancer than winning the lottery. I think I just stopped buying tickets! Of course the odds even out if you buy tickets for about 26 months. If life was fair, that is.

I think that to make this site, and disease, easier to follow I should fill in some of the beginning details as best I can. Forgive me if I jump around a bit or repeat myself. I’m doing the best I can, really.

Fall 1999

The first vision troubles I had started in the fall of 1999. I was at work, in a retail store environment that had a lot of bright fluorescent lights, and began having headaches. A lot of headaches. I was OK at home and on my days away from the store but at work after about 30 minutes I’d start to get a headache and after an hour or so it would reach migraine potential. Many times afterward I’d have to go home sick, leaving my shift early. I made an appointment with a local optometrist and was seen rather quickly because of the headache symptoms. What he noticed was that my left eye (the one now with cancer) was irregularly shaped. Instead of the normal eye curvature it was more elliptical. And that was causing my headaches due to the change in vision. So I ended up with prescription glasses that I had to wear all the time to correct the vision in my left eye. It may be important to note that my right eye was still 20/20 vision, and is still to this day. The headaches subsided with continued use of the eyewear and life was good.

March 2003

As I’ve said previously the first indication of eye trouble was March 28 2003, a Friday. A night I’ll never forget. My wife and I were at a retreat/conference. I remember clearly reading from a book in front of me, and the feeling of a sudden change, almost like a light switch being turned on. I looked up and my vision was blurry. I looked down again to my book and I couldn’t read it, the letters were all blurry. I turned to my wife and said “I think something’s wrong, my vision’s all blurry”.
I persevered though the remaining of the evening but ( since it was a retreat conference from Friday until Sunday) on the next day, Saturday, we left. My vision was still blurry and my wife had to drive us home. I made an emergency appointment with my optometrist to check my vision and when he couldn’t see a reason, other that a possible anomaly in the eye, he scheduled an appointment for me with an ophthalmologist, the next level of specialized eye treatment.

Spring 2003

I’m really not sure when the first visit to my ophthalmologist was, but it was only a month or two after being referred so it couldn’t have been too long.
This doctor noticed a growth behind the left eye. It was fluid and solid, nothing definitive either way. The retina was stretched ( an edema) because of the growth and that was what was causing the blurred vision. I was at that time put on the 6 month test list. He wanted to see me every 6 months to follow up on the changes to my vision as well as on the changes to the growth behind my eye. And so began my journey of not knowing what was wrong with my vision. Not knowing what was the growth behind my eye.
Not knowing a lot of things. The next several months, and couple of years, would not greatly expand on that knowledge. But I ended up having to quit my job (August 2004) and begin working at home.

Summer 2005 and Current

I started wearing an eye patch as I worked on my computer ( I maintain several content websites)  during the summer of 2005 and now I wear the eye patch full time, working at the computer, watching TV, even driving the car.
My vision was always getting worse, little by little, but my right eye was able to make up for it. The beginning of this year (2006) was the turning point. My vision started to get very poor and was only corrected when I was wearing the eye patch. By June I decided that the best thing was to wear the eye patch all the time and I find that I am much better throughout the day. I can more easily go from light to dark rooms. I do not lose perspective or feel as if I am losing balance as much. Who would have thought that by limiting my vision from two eyes to one eye I’d be better off? 

Today is August 13 2006. (Despite what the timestamp says! I’m just working through this thing.)

Not that I have a fear of triskaidekaphobia but it seems to be a fitting day for my first post to a website dedicated to a condition that is changing my life.

My name is Rob and I have been diagnosed with ocular melanoma.

I was diagnosed with ocular melanoma on July 4 2006. That was after 3 years and 3 months of a marked loss of vision in my left eye with no explanation from any of the doctors I had seen in the months following this change in vision (March 28 2003).  My opthamologist found an unexplainable, unidentifiable growth behind my left eye. I should add that I am in Kamloops, BC, Canada and even though I have  agreat local doctor, one of the best in BC, he is not an oncologist so I am travelling every few months to Vancouver BC to be treated.

A hint for you: if you go and see a specialist referred by your opthamologist and he says “I don’t think it’s a freckle” find someone that has a definitive answer. Fast. Who knows how much of my vision may have been saved if this was caught 3 years ago.

I don’t expect many visitors to this little spot on the Internet. After all, about 7 people out of a million are diagnosed with this type of cancer every year. That means, in Canada, about 200 people will be told they have ocular melanoma this year. And the next year. And the next.

And they won’t understand what to expect and their doctors will not be able to fully prepare them because they see this particular type of cancer so infrequently. So hey, you’re an odd duck… like me.

I will be sharing links, information and my own story as time progresses. After all, since you’ve read this far, we’re in this together so I look forward to you visiting regulary and sharing your comments with me.

Even if just to say “Hi” or “Hang in there!”.

I appreciate it, really.

PS. I’d like to thank my family doctor for inspiring me to create this website.