Friday...what a day!

Warning: This post will contain some graphic images and descriptions. Some people may not appreciate looking at or reading them

Thursday night we pulled into Ben and Katherine’s driveway at about 9:00. Duke jumped out of the car and Sammi and Shakey (B&K’s dogs) came outside so they could meet. All of a sudden a herd of deer ran down their street past the driveway. Since Duke loves to chase things that run, he tore off after them. We had to yell his name a few times to make him stop…that was pretty funny.

Well, Friday was a doozy. First thing in the morning Angel and I drove in to San Francisco for the appointment at Dr. Char’s office. Our first impression of that group included 2 observations. (1) Dr. Char knows his stuff. (2) Dr. Char’s staff (especially Tia, Julie, and Monica) know their stuff and are very friendly. Notice the difference between those two statements.

The funny thing I’ve noticed about eye doctor’s waiting rooms is that they are never big enough…it’s almost as though they don’t realize that nearly every one of their patients needs someone else there to drive them home. When Tia was doing my initial exam, the first odd thing she noticed was that when shining a bright light in my eyes, the right pupil constricts…a clear sign of a healthy reflex. The left pupil, however, would open slightly with exposure to the bright light. It was very refreshing how open Tia was with information. Whenever we asked her a question we got a clear, honest answer. This is in stark contrast to someone else in that office.

Tia then took me to an instrument where I was told to focus my left eye at an amber light in the center of the field of view. Small white lights of varying intensity would flash around in my periphery, and I was to click a button every time I saw one. At the end of the test I joked that it was weird they didn’t test the upper half of my visual field at all, but that I was pretty sure I scored 100%. Here’s a map of where the spots were. The dark spots are the ones I did not see.

After dilating my pupils, Dr. Char then closely examined both eyes, and hand drew what he was seeing. I told him I wished I could see what he saw. He replied that I would get my chance. He recorded some notes while we listened, during which time he said that as a young, healthy man, my estimates that my chances of long term survival are excellent, but that my chances of retaining vision in the left eye are iffy. He went on to explain that he has seen some people who he put in the same group as me who are walking around now with 20/20 vision in the affected eye, although he cannot understand why it happened that way. So, there’s a small chance that I’ll retain vision, but it’s more likely that I won’t. I think his analogy was something to the effect of having a flat spare tire in the case that something bad happened to my only other good tire. Maybe that means that I’ll somewhere around an effective 1.1 or 1.2 good eyes.

He also said that he definitely recommends proton beam therapy. “He needs protons” is what he told his assistant. In addition, he recommended a laser therapy as an adjunctive therapy to proton beam radiation. Basically the 810 nanometer laser would heat up cells inside the tumor, and even relatively small increases in temperature can start to kill off some of the bad guys in there. Some of his past research has shown that there may be a trend for better outcomes by combining these two treatments, though the differences were not statistically significant. This basically means that you cannot be 95% confident that adding the laser treatment will give any additional benefit, but it certainly couldn’t hurt.

We had a long wait in the waiting room before Monica performed a few more visualization exams. First, another fluorescein angiogram showed the flow of fluorescent molecules through the blood vessels in my retina, and the tumor, just like the last image I showed. Then I crawled into a ghetto-looking bed and got ready for some crazy images of my retina. Here’s my tumor.

Next was another set of ultrasound images/measurements, this time without the eyelid between my cornea and the ultrasound probe. So yes, that meant getting gooey ultrasound gel squirted onto my eyeball. From the angle in this picture you can clearly see where the tumor is. Normally the retina is just a thin film along the back edge of the eye, forming a sort of half-sphere shape. Since the tumor in partially in the way, the retina is being lifted out of place. Adjacent to the tumor you can see another gap, which is filled with fluid.

The next part, the laser treatment, was not very fun. As I mentioned, the point of the laser treatment was to generate heat in the area of the tumor. Since this can be a source of intense pain, Dr. Char said that it was important to numb the back of the eye first. I now wish I would have had the laser treatment without being numbed. He opened a package to reveal a syringe with a pretty long 25 gauge needle on the end, filled it with a mixture of xylocaine and something else, and with very little warning or time to prepare, he poked it through my bottom eyelid, underneath my eyeball, and into the space at the back of my eye socket. While it hurt as it initially punctured my skin, the rest of the sensation was the strangest kind of strange I’ve ever felt. Even writing about it now makes me anxious and is giving me the shivers. Dr. Char then told me to close my eyes and wait several minutes while he went to attend to the patient in the next room. Angel was told to wait in the hallway right outside the room. I have no concept of time for this part of the story. I very quickly starting getting very hot and feeling very nauseous, so I called out, “Dr. Char?” “Yes?” I heard him reply. The next thing I knew I was having a vivid dream of someone trying to get my attention, and I was trying to turn toward them but I couldn’t move. I then woke up with several people around me and I was sweating profusely. I heard Angel crying in the hallway and asked if she was okay.

Apparently Angel looked at me as soon as I called out for Dr. Char, just in time to see my head roll forward and my body start to convulse slightly. She yelled out that I was passing out. Dr. Char and a couple of others ran into my room and tried to wake me up by yelling my name, and possibly my nudging my shoulder. He yelled out to call 9-1-1. Julie said “Did he say to call 9-1-1?” and Angel replied, “Yes! Call 9-1-1!” I woke from my dream as Julie was talking to the 9-1-1 operator, so Dr. Char told her to cancel the call. Monica used paper towels to sop up volumes of sweat that were coming out of my forehead as she laid my chair back. The next 20 minutes or so I transitioned back and forth from being insanely sweaty to freezing cold. I finally felt good enough to sit up for the laser treatment. It only lasted about 5 minutes, and generated a feeling of warmth in my eyeball but no pain.

I’m still not 100% clear on what caused it, but it was possibly the increase in pressure in the back of my eye socket coupled with the anxiety associated with the feeling of the long needle traveling that distance which activated my parasympathetic nervous system (via the vagus nerve), while simultaneously blocking my sympathetic nervous system (my fight-or-flight response), causing me to simply pass out. This is a so-called vasovagal syncope, an involuntary reflex mediated by my brainstem. Listen to this advice very carefully - if someone offers to give you a numbing agent at the back of your eye socket, I suggest that you hurt this person before they hurt you.

I ended up having an eye patch on for the rest of the day until just before going to bed. Thanks for making it so discreet, doc.

We got all of the instructions we needed for what was to come in the next few days, then headed back to Ben and Katherine’s to relax before having a couple of beers and a glass of wine with an awesome dinner that Katherine made us. We even got to take a short nature walk, where I started getting used to one-eyed vision. It's gonna take a little getting used to. I missed the glass when I first tried to fill it up with water at the faucet.

Keep checking back for more!