Treatment is over!

As I write this, Angel, Duke and I are driving back to Phoenix on Saturday evening. We left northern California yesterday and stopped in Irvine to spend a night and much of today with my cousin Stephanie. Good to see you again Steph! Thursday was my last day of radiation, and everything appears to have gone perfectly according to plan. They also typically have a 95% success rate with this treatment, so let’s cross our fingers that I’m part of that group.

I wrote my last post shortly after the first day of radiation. The last three appointments were at 2:00 in the afternoon, which was sort of a bummer because it didn’t give us enough time to do any significant exploring around the area. If we had a morning appointment, we could have had the entire rest of the day to go on a longer drive somewhere. Instead, we got to sleep in each morning, have a nice breakfast, do a little sightseeing before the appointment, then enjoy the free cocktail hour before deciding what to do for dinner.

Back to the last three days of treatment…here’s the picture of what it looks like having your eyelids retracted. The bottom one was the most important to get out of the way, since that is the direction from which the proton beam was entering my eye. This photo was taken just before she really cranked it down to get the bottom one much more out of the way.

I mentioned before that I didn’t feel anything at all when the proton beam was turned on. That’s still true, but it took a second day of treatment to realize something that I did notice when the beam was on. I was told to look very far up at a blinking red LED, as this would get my eye into the correct position. As soon as the beam was turned on, there was a flowing purple fog in the upper area of my vision that made it hard to stay focused on the red light. It may have been a trick of the imagination, but I don’t think it was; it’s more likely that somehow the proton beam was interacting with that part of the retina in some way that made me think I was seeing purple fog. Anyway, despite how hard I was trying to keep my eye still, it seemed as though it was drifting and following the fog. After a couple of seconds I would have to concentrate and refocus my eye on the red light. Because of this I was nervous that I was moving my eye way too much. After watching a couple of videos that Angel took of my eye on a monitor in the next room, I realized that my eye didn’t drift as much as I thought. Instead, I must have just been changing my focus without actually moving my eye.

After another discussion with Dr. Mishra, we also realized that the last description we got of the surgery may not have been entirely correct. Rather than cutting a slit in the sclera and feeding the tantalum rings between layers of eye tissue to the back of the eye, it now seems that Dr. Char may have simply sutured the rings to the back surface of the eyeball. We saw a photo of the rings in place on an eye on a research poster that was hanging near the treatment room. Here’s a picture that Angel snapped from the poster. Again, this is NOT my eye, but it’s probably very similar to what my eye looks like.

I then asked what the slit in the side of my eye was all about, and Dr. Mishra said that Dr. Char had to do that in order to grab on and turn my eye. I’m not sure that I’m buying that one, but we don’t really have a choice but to wait until we see Dr. Char again and ask him directly. Hopefully he’ll be in the mood to answer questions intelligently during our next appointment. I’ll keep you updated in case anyone else cares about those details.

After the last treatment session Dr. Mishra talked to us and said that everything had gone very well. We discussed which eye structures had received doses of radiation. Luckily I tolerated her yanking the heck out of my lower eyelid, so she’s pretty confident that I won’t experience the side effects of sunburn on my eyelid and permanent loss of those eyelashes. But, it will take a couple of weeks before those symptoms would normally set in, so time will tell. She was able to avoid the front of my eye so I shouldn’t have any problems with cataracts down the road. I’ve also got a pretty slim chance of developing glaucoma later on as a result of the radiation. I mentioned before that the pending vision loss will take place gradually over months to years, so we’ll have to wait and see what happens there.

Here’s one of the images that make up the 3-d reconstruction of my eye, as well as the doctors' calculations for which eye structures received which doses of radiation. I tried to label the important parts of the image, but it's easier to see what's going on when you look at all of the images/views together. Basically it shows that the tumor, a border around the tumor, and the area of retina that covers the tumor received the full dose of radiation, so it will likely be destroyed. The macula (which includes the fovea, responsible for center vision) got the full dose of radiation, so it will likely be destroyed. About 20% of the area of the optic disc got about a 20% dose of radiation, so my future vision will depend a lot on how the cells in that area handle the radiation. Also, notice that 33% of the surface area of my retina received the full dose, and about 40% of the retina received some dose of radiation. This most likely means that as a best case scenario, I’ll have a dark spot in my vision that covers approximately 33% of what that eye should see.

Physically, I still feel great. My eye is looking much better now than it did a week ago. It’s not yet normal looking, but it’s getting there. It still feels like there’s something in my eye, but it’s getting less annoying. The cut in the eye looks like it’s almost healed. As for my vision, I’m a little confused about what’s happening with the left eye. If I have my right eye closed, the top half of my field of view is gray, which I expected. The weird thing is that the rest of the visual field is pretty blurry. I did a fair amount of the driving from northern California the last two days, because I was going to have to get back behind the wheel at some point. The left eye is good enough that I can see cars, but I can’t read license plates or road signs with it. If I have both eyes open it makes things sort of blurry, and sort of like I have double vision, but it's not really that bad either. If I ever had any doubt about what I was seeing, I just closed the left eye. Luckily my right eye is really good. Don’t be jealous, but it’s possibly one of the best eyes in the world. When reading a menu the other night I realized that there is a point where I can focus with my left eye. Anything that is about 6 inches in front of my face is crystal clear. My left eye vision in dim light conditions is much worse than in brighter conditions. As I mentioned before, my vision will be gradually changing, so right now there’s no telling how it will end up.

As for the bright flashes that I saw at the beginning, they’ve change somewhat. They are very frequent now, at least a couple of times a minute on average, and they move around as they are fading away. There’s no preference to whether they drift clockwise or counter-clockwise, but they morph as they move, sort of like a lava lamp blob.

Hopefully the results from the genetic workup of the tumor biopsy will be back in a week or two, so we’ll know a lot more about the activity of the tumor, etc. at that point. Otherwise, now we just wait. Both Angel and I are heading back to work tomorrow.

I'll still update this periodically, but probably less frequently than I have been. If anyone has questions about anything, feel free to email me or leave a comment on the blog, and I'll write back.