A big, red eye

Warning – a couple more gross pictures ahead.

I wanted to revisit a couple of things I mentioned in my last post. First, I noticed a bunch of typos that I’m not going to fix. Second, the image showing the tumor as a big white mass has been updated. I labeled where the center of vision in that eye, as well as the optic disc are. The optic disc is where blood vessels and the optic nerve enter/exit the eye. With the proton beam therapy that I am going to have, the closer the tumor is to the optic disc, the worse my chances of retaining vision in that eye. The diameter of the tumor is just greater than 10 mm, so estimating from that picture it appears that the tumor is only a few millimeters from the most sensitive spot in my eye. This is probably why I won’t be able to see out of that eye after treatment.

You already read about the crazy day on Friday, with the passing out and all. Many of the people who have heard about my vasovagal have mentioned that it happens more often and more quickly to guys. I like to think that in a stressful situation, guys would prefer to stand there and fight. However, since our fight-or-flight response is blocked, we just decide to go to sleep. J

I also have hardly mentioned how much help I’ve been getting while out here in California. Ben and Katherine have been letting us stay at their house, making us feel right at home, and taking care of Duke while we’ve been bouncing from appointment to appointment. They’ve been making us excellent food and not letting us help with the cleanup. I also couldn’t possibly imagine going through this without Angel. You all know how positive of a person she is, and she has helped me keep laughing and looking at the bright side through everything. Angel (along with some help from Google Maps Navigation beta) has also done a thoroughly badass job of navigating Bay Bridge and downtown San Francisco traffic, while I’ve been limited to one eye and blurry vision.

Saturday morning I woke up and Ben had my MRI data loaded onto his computer. We played around with that data for a little while in Matlab. We found a really good transverse slice that shows another view of the tumor in the eye. During the MRI I was told to keep my eyes very still. You can tell from this picture that I was focused on some point in space off to the right. You can also see the tumor in the left eye, as well as the fluid pocket that is next to the tumor.

For some reason, my nose also looks crooked. Maybe this goes back to when we were little kids and I slipped and landed flat on my face at Slide Rock in Sedona? I have no idea how a diagnostic radiologist can look at an entire set of data and see what looks bad and what looks normal. Ben and I found this slice of data because we knew exactly what we were looking for! I'll have to get together with Michelle after returning to Phoenix and try to understand how she does what she does.

Saturday night we took a nice long 2.5 mile walk to Pyramid brewery for some drinks and appetizers, to take advantage of their Save the Air campaign…happy hour pricing if you don’t drive there. Sunday Angel and I went to San Francisco to have lunch (delicious pork tacos) and spend some time with some good friends, Jessica Huang, her husband Barnaby, and their two cute little girls. Barnaby is from the city, so they took us on an excellent driving tour. We got some cool pictures and got to see some views that many tourists don’t get to see. We then had sushi with them at a place in Japantown that was run by all Chinese people. I don’t care who gives it to me though, as long as they have white tuna, I’m a happy man. It was also convenient that Jessica’s mom happened to be out of town for one more night, and since she lives only a short distance from the hospital where Angel and I had to check in at 6:30 Monday morning, they let us stay there for the night.

So, Monday morning was the surgery to get the tantalum rings installed in my eye. Also, we weren’t expecting it but were told that Dr. Char also planned to do a fine needle biopsy of the tumor. He normally does this so that he can look at the cells under a microscope and get an idea of the grade of the tumor. Also, they will send the biopsy away for molecular and genetic characterization, which will help them better determine the later treatment and monitoring steps. The surgery went well, and Dr. Char told Angel afterward that it was a low-grade tumor, meaning that the cells look pretty similar to normal tissue, and are therefore less “crazy” and less likely to metastasize. Recovery after surgery took several hours, and after the anesthesia began to wear off, the throbbing in my eye was becoming more obvious. I got an injection of Demerol to help out with that a bit, and then got our check-out instructions. Angel drove me home as I tried to keep my nausea in check. I was to keep my eye bandage on until the next day when Dr. Char’s office would remove it.

Dr. Char’s job during surgery was to sew 4 small tantalum rings to my eyeball. His goal was to surround the tumor with these rings so that the radiation people know where to aim the proton beam. My understanding is that on radiation day they’ll put me in a very specific position, then will take an x-ray to see where the rings are, and then will aim the beam accordingly. Here’s a picture similar to what I think they’ll be doing…a computer model of an eyeball with the rings surrounding a tumor (http://www.djo.harvard.edu/files/3331_389.jpg). When he says that the surgery went well, I trust that means that he feels like he got the rings in the right place.

After the surgery, even though my left eye was bandaged, it still felt as though I could feel the stitches in the back of my eyeball, as there was a scratching sensation whenever my eye moved. As you know, if your left eye is closed and you move your right eye, your left eye moves along with it. My left eye hurt pretty badly whenever I moved it, so for most of Monday night I tried to keep my right eye either closed or staring at one point in space. You’d have to ask Ben, Katherine and Angel, but I must have made for a pretty creepy dinner guest that night.

This morning was an appointment to get the bandage taken off. Tia peeled it away and said that things looked good. Again, when Dr. Char came in he said that everything looked normal. When Angel looks at it, or when I look at a mirror, I don’t understand how they can say “normal.” But, they’ve seen this many times before so we have no choice but to trust them for now. Here are a couple of pictures to show you my “normal” looking eye.

The pictures don’t really do it justice, but after we got back to Ben and Katherine’s house and I was able to look closely at my eye in the mirror for a while, I’ve realized that I don’t think it was really the stitches in my eye that I was feeling. I think it’s actually a cut in the cornea of my eye, just outside of my iris. It looks like it’s split open and hasn’t sealed shut yet again. I now have medication to keep my left pupil dilated for the next week, in order to keep the eye relaxed instead of continually flexing muscles to open or close the pupil with changing light. There’s also some Neosporin-like medication that I’ll have to put a small glob of in my eye twice a day to keep it from getting infected. For me, having one good eye and one bad eye giving me crappy, blurry vision, means I’ll have a pretty consistent headache for the next week. Here we go ibuprofen!

Tomorrow we have an appointment for a mask fitting and a simulation of the radiation therapy. I’m not sure how similar it will be, but I came across this picture of a Hannibal Lector wannabe (http://www.djo.harvard.edu/files/3330_389.jpg).

I’m gonna stop typing now, as my vision is poor (Angel did offer to type for me, but my thought process doesn’t work in a way that makes it convenient to do it that way). I’m typing this in Microsoft Word with an 11 point font and have the page zoomed into 260% so that I can focus on the letters.