Details about surgery, and prepping for a horror movie

When you look at me now, I either look like Ray Charles (sunglasses on) or a cyborg with swollen eyelids, a bloody eye and a huge pupil (sunglasses off).

And I feel like I constantly have an eyelash in my eye, except the eyelash feels like a small twig. It’s really pretty annoying.

Wednesday Angel and I had an appointment at the Mount Zion campus of UCSF. We met three people who will be there during all of the radiation appointments in Davis next week. (1) Dr. Mishra, an oncologist who sees all of the eye cancers passing through UCSF; (2) Dr. Daftari, a physicist who knows a lot about the proton accelerator, etc; and (3) Charlie, an engineer who makes sure that my head is in the exact same position each day of treatment.

We first spent about 20 or 25 minutes with Dr. Daftari and Charlie, making my mask, taking some x-rays, etc. The x-rays are now showing the 4 tantalum rings that are back there, and they are now constructing a 3-d model of my eyeball. Dr. Mishra is primarily responsible for coming up with a plan of attack for zapping this fetus that is growing in my eye. More on that in a moment.

First, the mask. It’s never a very comfortable feeling having your head confined in a very rigid position with no real idea of how long you’ll have to be there. Then add in a bite block and a suffocation mask, and a little bit of claustrophobia may begin to set in. Just joking about the suffocation mask, sort of. Charlie first put my head in place, then screwed in the bite block attachment and asked me to bite into a putrid smelling ball of crap and hold my teeth in it. Placing my lips around the stuff kept me from drooling all over myself. He warmed up the sheet of plastic to soften it up before (gently) smashing it into my face and holding it there until it cooled and could hold its shape. It was while the mask was setting that I probably could have freaked out if he held it there much longer. I couldn’t breathe through my nose, and if I opened my bottom lip to try to breathe I probably would have drooled a nice big puddle. I tried making hand motions as if to ask “how much longer?” but that message didn’t really get across. After he cut out some eye holes and breathing holes, I was laid in a horizontal position to stare into a red light while the x-rays were taken from two different angles.

I asked for a copy of the 3-d reconstruction of my situation, which they said they could get to me on Monday.

After this Angel and I spoke with Dr. Mishra for quite a long time. She is the epitome of an excellent physician - smart, not arrogant, and very willing to take as much time as is necessary to answer our questions. Since she was willing…we asked a lot of questions, and she explained a lot of stuff that we weren’t clear about before.

The surgery – Dr. Char did cut through the outside edge of my eye, which would explain the cut that I saw in my eye! After I was under general anesthesia, they didn’t pull the eye out of the socket, but they did turn it as far as they possibly could to give them as much access to the back of the eye as possible, since that’s where the tumor is. Even with the eye turned very far, the front of the eye (lens, pupil, etc.) is still visible from the outside. From the front they shine a bright light into my eye and the tumor literally projects a shadow onto the back of the eye. The surgeon’s job is to place the rings as best as they can around the tumor (pretty much on top, bottom, left and right of it). To do this, he cut a slit in the sclera (the white shell that makes up most of the outer eyeball) and basically worked the rings between the sclera and choroid all the way to the back of the eye, and then sutured them in place. As you can imagine, it takes practice to do this well, and that’s why Dr. Char is so good at that surgery. This also explains why it feels like someone spent about 1.5 hours beating the crap out of my eye.

She said that my eye will look somewhat more normal in about a week, but it will take somewhere around 4-6 weeks to look completely normal again. Awesome.

Now, back to the image of my tumor. I didn’t make it clear before that the picture DOES NOT show my entire retina. The camera lens was held up against the front of my eye, and my pupil was dilated, but the camera’s lens only had a 60 degree field of view. They couldn’t tell us what the magnification was, but there’s definitely more retina that didn’t make the picture. The size of an average human retina is about 1094 square mm. My eye measures about 8% longer than average, so I’ll guess that my retina is a bit bigger as well, and will guess about 1150 square mm. Based on the measurements of my tumor, it only covers about 9% of the retina’s surface area. Kind of weird that’s it’s killed about 50% of the vision in that eye.

Here’s an updated version of that picture.

I outlined the tumor in blue. The red line is an approximate spot of where they measured the 10.5mm diameter of the tumor. Based on the length of the red line, I roughly estimated a line that would represent 2.5mm in length, shown in green. That’s because Dr. Mishra said she will be zapping the entire shape of the tumor, and an additional 2.5mm margin around the edge of the tumor, in order to radiate any little micro-spines of bad guys that might be creeping outward from the edge. So, to the blue area, add a shell the thickness of the green line. You can see that that will demolish the center of vision, the spot where most of the fine details from the eye are seen. The green line also comes pretty close to the optic disc, the spot where all of the sensory information from the eye is sent to the brain. Damaging that with radiation would be a bad thing, but it would also be a bad thing to miss part of the tumor. Dr. Mishra’s priorities with this treatment are, in order, (1) kill tumor, (2) save eyeball, (3) save vision, the same as Angel’s and my priorities. She’s going to consider only extending her margin 2mm in that direction to try to spare my optic disc, but she obviously needs to make sure she kills the whole tumor first.

Part of her treatment plan is to think about the best angle to hit the tumor from. She’ll have to consider the 3-d shape of my eye and the tumor to make this decision. When radiation time comes they’ll lock my head in place, I’ll bite down on the gag-me stick, and this will keep large-scale motions of my head from happening. Based on the angle of attack that she thinks is best, I’ll be told to focus my eye on a red spot that will be projected somewhere off in space, in order to turn my eyeball in a specific direction. The machine produces a relatively fat beam of protons, all moving forward, parallel to each other. They will make a custom aperture that is specific for my eye and my tumor shape that will block much of the beam, so if you can imagine it, only a certain “shape” of the original beam will pass through the aperture. Since proton beams have very little side-scatter, it will maintain this shape until it hits the tumor. So the entire tumor and the extra 2.5mm margin will be radiated at the same time. The beam will hit the tumor for about 90 seconds each day. They have a camera focused on my eye the whole time, and in case my eye wiggles too much while they’re doing this, they’ll shut the beam down immediately.

Radiation is measured in a unit called a gray (named after some guy). My treatment plan includes delivering 56 gray of radiation to the tumor over the course of 4 days, 14 gray each day. If you’re interested, 1 gray means that 1 kilogram of tissue is absorbing 1 joule of energy from the radiation source. My tumor is obviously much less than one kilogram of tissue. If I roughly assume that the density of the tumor is about the same as water, then it would weigh somewhere around 0.5 grams. If this is correct (Michelle, Paul, help me out here), then the tumor will absorb 1 gray of radiation by absorbing 0.5 millijoules of energy. It will absorb the full dose of 56 gray by absorbing 28 millijoules of energy over the 4 days of treatment. If you’re an over-achiever, you can continue on with the calculations…1 joule is equivalent to 1 watt-second, so you can put these numbers in light bulb terms if you want to.

The radiation from proton beams actually has slightly more biological activity than other radiation sources, so these numbers are a little off. Technically speaking, my dose will be 56 gray-equivalents.

During the surgery Dr. Char also took a fine needle biopsy of the tumor. He first noted that based on what the cells look like under a microscope it’s a low-grade tumor, but he also sent the sample away for further tests, including molecular characterization and gene sequencing. Based on patterns they’ve seen with a bunch of samples collected over the years, this will tell them how likely my tumor is to metastasize and grow in other parts of the body in the future. If it’s the bad kind of tumor, it’s possible that a couple of cells could already be setting up shop in my liver or elsewhere. While my other tests have all come back clean so far, a small population of cancer cells would be impossible to detect at this point. The molecular and gene test results will take around a month to get back. It seems probable that I will need to have some sort of scan done every 6 months or 1 year for a while. If the cancer doesn’t recur over a relatively short time period (maybe 5 years?), it likely won’t recur after that. However, we can never be sure, so it’s possible that they’ll want me to get continued scans for the rest of my life.

Also, the tumor will not die immediately from the radiation. The radiation is intended to damage the cell’s ability to replicate, so hopefully no more tumor growth. It will take quite some time for my body to start clearing away stagnant tumor debris. In fact, they don’t expect to see any change in the size or shape of the tumor for many months…possibly up to a year. They actually don’t expect the “footprint” of the tumor to change at all, ever. What they do expect to see is that the thickness will decrease eventually, which should bring the retina back closer to its original position. The best-case scenario is that I’ll always have the tumor in my eye, but the tumor will not be able to grow or spread. Weird, huh?

Anyway, thanks for reading this long post. My blog has now been viewed almost 1600 times in 6 different countries. I never knew my left eye had such a large following. Thank you all for the interest, and the support. It means a lot to both Angel and I.