One year and counting...

Well, it’s about time that I update this thing. I haven’t posted anything in about 4 ½ months. Also, today is my one year anniversary since I was first diagnosed with choroidal melanoma. It feels like it’s been so much longer than that, to Angel and me at least.

When I last wrote I was right in between two MRI appointments: one where there was an interesting spot that showed up on my liver, and the follow up MRI that all of the radiologists requested, just to make sure that the spot wasn’t an aggressively growing metastatic tumor in my liver. After the follow up MRI, we were very happy to hear that the spot appeared to be the exact same size, so it was likely really just an atypical hemangioma. From here on out, I am still planning on having an abdominal MRI done every 6 months. Since my last one was in mid-April, I’m looking at mid-October for my next.

Also since my last post, I’ve had a couple of eye appointments with Dr. DeSouza in Mesa, and one trip to San Francisco for a follow up with Dr. Char and his team. The consensus: my tumor is ever-so-slowly continuing to shrink, which is news I’ll take any day. On the other hand, when Dr. Char last saw me in early July, he said that he was starting to see early signs that the radiation damage to my retina was setting in. He wanted to see another fluorescein angiogram to see if there were a bunch of new blood vessels or not. If there were, it would be time for another Avastin injection into the ol’ eyeball. The damage wasn’t advanced enough at that time, but he did tell me that my extra visual loss was on its way. Remember, during my radiation treatment my entire macula (responsible for focused, central vision) was blasted by the proton beam, and part of my optic nerve was hit as well. Dr. Char told me that I should contact his office when I notice any visual changes setting in.

It was about two weeks after we got back to Phoenix that I started noticing the changes. It’s a little hard to describe, and the changes are definitely most obvious when I’m looking at text or at something that has organized lines (like window blinds, for example). The best way to describe it is that in the lower half of my visual field, I now have a bunch of small spots that appear to be smudged. The smudges would probably also be visible in the upper half of my visual field, but I cannot see anything up there :). Here’s an image that shows approximately what I see out of my left and right eyes (click the image for a larger view):

This is an example of approximately what I would be seeing if I were staring directly at the word “Denny” in the center of the page. First, notice that the image is slightly squished in the vertical direction. Second, notice the big black cloud that most of you probably don’t see. Third, you probably notice the little flashing piece off to the left (actually, after posting the blog entry the flashing part doesn't seem to be working right now...I'll have to try to figure that out later). All of those visual tricks have been with me for a long time now. The new change is the smudges that surround my focal point and continue into the bottom portion of the image. Also, I didn’t include all of the cool flashes of light that I get to see all the time. Of course normal vision would also see other surroundings around the book, but I don’t have a wide-angle lens on my camera :).

About a week after I started noticing the smudges I contacted Dr. Char’s office, who reported back that I should get in to see Dr. DeSouza within two weeks. I assumed that since the visual changes were setting in that it would then be time for some Avastin to try to slow down the damage. Dr. DeSouza proved my assumptions to be incorrect. Avastin would be used to prevent neovascularization (the formation of new blood vessels), which is not yet occurring in my eye. Instead, I’m growing some cotton in my eye.

I have what they describe as cotton wool spots. These are caused by retinal nerve fiber layer microinfarcts, which means that some retinal nerves are failing to receive a blood supply, due to small microvessels dying off as a result of the radiation I got. When the nerves fail to get their blood (the carrier for nutrients and oxygen), the nerves themselves die and essentially puke out their cytoplasm. This puke sticks around in the eye and looks like little pieces of cotton. These are my little puke spots:

There is not really a treatment for these cotton wool spots directly, it’s best just to treat the underlying condition (diabetes and hypertension, for example, can cause these spots). In my case, the underlying condition is radiation damage, so obviously nothing can be done to treat that. I’ve got Stage 1 radiation retinopathy so far according to this chart (http://www.eyecancer.com/research/Research.aspx?nID=76&Research=The+Finger+Classification+of+Radiation+Retinopathy&nResearchCategoryID=1&sResearchCategory=Articles). As it progresses, and specifically once it gets to Stage 3, I will become a candidate for Avastin injections once again. I’m not sure of the normal rate of progression of radiation retinopathy, but I assume that it may be fairly quick, as Dr. DeSouza scheduled my next appointment for 2 months after my last one. I should know more in mid-October.

The visual acuity in my left eye still measures at 20/20, but rather than reading the whole bottom line in the eye chart with ease, as I can do with my right eye, this time I had to look at each letter individually in order to read them with my left eye.

I’ll let you know when I know more. I hope everyone is doing well. Thanks for reading!