6 weeks post-radiation - second follow up in Mesa

Hello friends, time for another update. It seems like things are constantly changing with the vision in this eye of mine. Visibly, I've now lost about 1/3 of my lower eyelashes on my left eye, the scars on my eyeball are still noticeable and don't seem to be changing any further, and my left eye gets tired of being open before the end of the day, so it sometimes gets bloodshot.

I had another follow up appointment with Dr. DeSouza in Mesa on Friday. If you recall, when I saw him a month ago I had a great deal of swelling near the area of the macula in my left eye, simply as a side effect of the trauma from surgery and radiation. He gave me the Avastin injection, the anti-VEGF antibody (sorry to doubt your pre-conceived notions about drugs TJ!), which was intended to reduce the edema in the area. To cut to the chase, a single dose appears to have worked wonders for me. A month ago the vision that I did have in my left eye was about 20/70. When it was tested on Friday it was 20/30, so that's an obvious improvement. I should note, however, that some days are better than other days as vision is concerned, and Friday was one of the better days. Overall though, the vision is definitely improving.

While the vision I do have is improving, the amount of vision that I have in that eye hasn't yet changed noticeably, indicating that the tumor hasn't yet started shrinking. While Dr. DeSouza didn't take any measurements of the tumor he did mention that it still looked quite large, and didn't think that he had noticed any decrease in size. I didn't ask him specifically, but hopefully he would have mentioned something had he seen any obvious signs of tumor growth.

So, the amount of vision in that eye hasn't changed. The vision that I do have is improving. The lava lamp-like flashes of light I see, which became more frequent after radiation, are now back down to about once a minute on average, but now they last for 2-3 seconds instead of the 1 second that they used to last. They are now always dynamic, moving around the field of vision as the flash occurs. They sometimes show up in color these days, too, instead of the plain white that I used to see each time. Sometimes I get to see several at the same time, and when they are different colors it's like I'm getting a private fireworks show!

The other change that's going on is freaking awesome. Almost the whole length of the border between vision/no vision is a constant pulsing, almost like a constant strobe light, continually flickering with a really high frequency. Talk about a distraction... Interestingly, even when I have my left eye closed, the flickering persists. I was just kidding about that being freaking awesome.

I read that Oliver Sacks book, The Mind's Eye. It was pretty interesting, although I have to admit I was impatient during the first few chapters, as I wanted to hurry up and get to the part about the author's eye cancer. Skipping ahead in a book, however, is something I do not do. I was disappointed that Dr. Sacks had some misinformation about ocular melanoma in his book...incorrectly saying that only 1% of them metastasize. That's completely wrong. As I've mentioned previously, it's closer to 50% that metastasize. I've emailed Dr. Sacks to see where he's getting his numbers from, but he hasn't yet responded. One of the most striking take-home messages from the book is simply how different the visual experience is for each person. When it comes to stereo-vision, some people perceive three-dimensionality much more richly than other people, and these differences are more complex than simply how far apart your eyes are on your face. Therefore, the experience of losing vision in one eye is vastly different from person to person.

When my left eye was temporarily patched in California, I felt I'd be okay when it came to doing many things if/when I eventually lose vision in the left eye. Walking down the street, it was still pretty obvious to me how far away oncoming cars were, and approximately how fast they were traveling. Going down steps, or stepping off of curbs wasn't a big deal, because my brain already had some expectations about how big a step is, or how big a car looks based on its distance from you. Looking at something for which my brain had no prior expectations was a completely different thing. Hiking was relatively difficult, as the ground is not anywhere close to level or uniform. I had no ability to see depth when looking at a 3-d sculpture that I hadn't seen before. When we toured the California state capital building, and we were looking straight up into the top of the dome, I had to ask Angel if there was room for a walkway around a certain part of it, because I couldn't judge depth in that scenario either.

I think that's all for now. I have no more doctor's appointments set up for now until Angel and I head back out to San Francisco to see Dr. Char on January 7th. If anything happens before then I'll be sure to let you all know! Thanks to everyone for continuing to follow my blog. And thanks for the comments, phone calls, emails, and cards that you've sent. I know I speak for Angel also when I say that we still very much appreciate everyone's thoughts and well wishes. Peace out!

Oh, one more thing. Prop 203 recently passed in Arizona...I'm pretty sure I'm eligible to get a medical marijuana card, so I'll start taking orders sometime early next year! Just kidding, that would be bad!

Some random updates

It’s been quite a while since I’ve posted something new, so I guess it’s about time that I update everyone on the very latest. As a potential side effect of the radiation treatment, Dr. Mishra told us that if any part of my eyelid was hit by the proton beam, that I may develop a burn similar to a sunburn and that I may permanently lose some eyelashes, but that it would take a couple of weeks for those symptoms to set in. She wasn’t too far off. On day 15 after radiation was complete, I noticed that part of my lower eyelid was burning, and when I looked in the mirror, sure enough I had what looked like a sunburn on the inside edge of my lower eyelid. I only really noticed it when I would rub my eye. Angel, I wasn’t rubbing my eye, stop yelling at me! ;) We put the antibiotic/steroid ointment Tobridex on it a couple of times a day while it healed. Eventually the skin in that area peeled off, then it scabbed, and now that the scab came off, it looks much better now. Also, you have to look very closely to see it, but I did lose a very small patch of eyelashes in that same area. Not a big deal at all.

Onto some other random topics, you know how when something becomes part of your life all of a sudden you realize how common it is? Like when we bought a Montero Sport, we started seeing Monteros all over the road. Same with our MDX. Well, apparently the same is true with eye cancer.

The other day Angel and I had the TV on at home and that movie Bad News Bears was on, the movie where Billy Bob Thornton plays the coach of a terrible group of little league baseball players. It’s a pretty funny movie in general, and one which we have seen a couple of times in the past. But we noticed something new this time. At one point there’s a chubby kid in a wheelchair who shows up to practice with an eye patch on. The coach says, “Hey Hooper, what are you doing with that patch on your eye? Playing Pirate? Come to swab the deck, matey?”The kid replies with, “Mother says I have cancer of the eye.” It turns out the kid lied, and his cat had scratched him, but we thought it was funny that eye cancer got a mention on the big screen!

Eye cancer also got some airtime on NPR the other day. On a recent episode of Fresh Air, Terry Gross interviewed a famous neurologist named Oliver Sacks. If you haven’t heard of his name, you probably have heard about some of the topics that he researches or writes books about. His newest book, called The Mind’s Eye includes a couple of chapters about his own fight with choroidal melanoma over the last few years. It was a really interesting interview, about 30 minutes long. If you have time to listen to it, here’s the link: http://www.npr.org/templates/story/story.php?storyId=130732146. I ordered his latest book, and just got it in the mail yesterday, so I’ll let you know how it is.

I’ve read a couple of other books in the past couple of weeks. First, one called Live Strong, put out by the Lance Armstrong Foundation. It’s a compilation of stories written by cancer survivors. It covers the spectrum as far as type of cancer and age, and it was a pretty good read. A friend at work let me borrow her copy of it, and luckily it was a large-print edition. I already knew it, but that book really drove the message home that I’ve been really lucky compared to so many others out there.

The second book is called Cancer On $5 A Day – Chemo Not Included, by the comedian Robert Schimmel. My friends Heather and Lindsey gave me that book right before we left for California, and I just now made time to read it. H&L – if you’re reading this, thank you very much for giving it to me. It was one of the best books I’ve read in a long time. I very much recommend it to everyone. It’s about Robert Schimmel’s battle with non-Hodgkin’s lymphoma, back in the year 2000, and how his sense of humor helped him deal with the whole thing. It’s such an excellent balance of humor (sometimes pretty vulgar, but c’mon, who doesn’t appreciate vulgar humor?) and emotion. I was literally cracking up out loud at parts, and fighting back tears at other parts. Angel and I decided to go online and see if Robert would be performing in Arizona anytime in the near future because it would be funny to see him live. Unfortunately we quickly found out that after beating the crap out of a really bad cancer, he died from injuries sustained in a car accident only seven days before I found out about my cancer. That was a big-time bummer.

And finally, some thoughts about “experts”. I had a phone conversation with one of my doctors about two weeks ago, that sort of turned into an argument. I’ve already mentioned that my tumor biopsy came back as a “Class 1” tumor, meaning that I’ve got a low likelihood that the tumor will metastasize. That’s very good news for me because Class 2 tumors are extremely likely to metastasize. To date, no one has survived metastatic ocular melanoma, and the median survival time from the detection of the metastasis is less than a year if it goes untreated. With some experimental treatments out there, some people are alive with metastases (mets) up to seven years after first finding the mets.

So, the fortunate thing about my Class 1 tumor classification is that it has given me a lot of peace of mind, knowing that the likelihood that I will have metastasis is very low. The unfortunate thing about this classification is now that I am in a low-risk group for metastasis, I feel it’s going to be hard to justify to people why I should get follow-up scans to check for metastases (mets, as they’re referred to). Statistics from previous studies say that I’ve got about a 5% chance of mets over the next 8 years. 5% sounds really low, right? If there was going to be a car speeding down a road only 5 minutes out of every 100 minutes, would you not look both ways before crossing? I would. Would you play Russian roulette with a 20-barrel gun with only one bullet in it? I wouldn’t. When it’s dealing with my life, 5% doesn’t sound as low as I’d like it to.

My doctor that I was on the phone with told me that he wouldn’t recommend any sort of follow-up imaging tests, since I’m in a low-risk group. No PET/CTs, no MRIs, no x-rays, not even an ultrasound. He’s suggesting that I only get an annual liver function test. With this type of cancer, when it does spread, about 85% of the time it goes to the liver. Other times it goes to the lungs, the brain, the bones, and the skin. My main problem with his recommendation of only getting liver function tests is that it’s not that sensitive of a test. Some studies show that in about 80% of times where a PET/CT picks up a small metastasis in the liver, the liver enzymes all measure within a normal range. When the tumor is large, sure the enzymes will probably measure out of range, but by that time it’s definitely going to be too late to do anything about it. It will most certainly be too large to qualify for a clinical trial of any sort. When it comes to this doctor, I definitely appreciate everything he did to treat me so far, but I believe his recommendation for follow-up is a complete load of garbage. It makes me wonder how many people would not even question what he, or any other expert, says. “Well, the doctor says I only need a blood test once a year, so that’s good enough for me!” No thanks.

If anyone is interested, a journal publication that I just read the other day was a study trying to understand some aspects of how this disease spreads using a mouse model of spontaneous uveal melanoma (a more general term that includes my choroidal melanoma). In mice, they show that the cancer cells spread to all tissues throughout the mouse long before we can even detect the primary tumor. However, the disseminated tumor cells develop into growing tumors in the various tissues at very different time points. It’s not clear why the cells grow faster in some tissues than in others, but the authors show that it possibly has something to do with the immune system, specifically the action of CD8+ T cells. When the tumor-bearing mice were depleted of CD8+ T cells, the tumors grew in nearly all of the tissues very quickly.

It’s not known for sure, but I’m willing to bet that the same is true in humans. We do know that the tumor cells spread very early in humans (for those tumors that do spread), as removing the eye as soon as you find the cancer has no effect on long-term survival rates compared to just radiating the tumor. As in the mouse, the tumor cells in human metastatic tumors likely spread throughout the body as well. In humans they probably just tend to grow more quickly in the liver than in other organs.

To me, this shows that we all need to be proactive in our follow-up care. Sure, the statistics are on my side, but low risk is not the same as no risk. Realizing that some body scan do expose you to radiation that can be harmful, I intend to be as vigilant as I feel like I need to be.

First follow-up appointment in Mesa

I had my first follow-up appointment yesterday, Friday, with the retinal specialist here in Arizona, Dr. DeSouza. I described to them the changes in vision I've noticed in my left eye, as well as the changes in the bright flashes of light that I described in a previous post. I also told them that when I'm looking at the computer screen, for example, and take turns closing my right then left eye, not only is everything blurry with my left eye, but also the letters on the screen are about half as big as they look with my good eye. Apparently I'm now temporarily near-sighted in the left eye.

The fact that the flashes that I've been seeing have become much more frequent and more intense means that there's more pressure on the retina. A side effect of the surgery and radiation that is going on in my eye is macular edema, which means there's swelling caused by an accumulation of fluid around the area of my macula. From previous images I've posted you could see a pocket of fluid immediately next to my tumor. Now there's even more fluid there. If the amount of pressure underneath that part of my retina gets too high, there's a potential that it could lead to either tearing of the retina, which would suck, or it could lead to even more of the retina becoming detached, which would also suck.

This is an image from an Ocular Coherence Tomography test that measured the thickness of my retina. OD (oculus dexter) means my right eye. OS (oculus sinister) means my left eye. I find it interesting that my "sinister" eye is the one that gave me cancer (haha). This test was only taking measurements over a total length of 6 mm, the approximate diameter of the macula. You can see the dip in the center, which is the fovea, the thinnest part of the macula. You can also see that in my bad eye, the whole thing is just taller, due to the fluid building up underneath. On the right edge of the image from the left eye, you can see the edge of the tumor.

Here's another image showing the data from a top-view. The little colorbar down below describes what thickness each color represents (measured in micrometers). The fact that my macula is not only raised, but also warped, explains why I can't focus on things with that eye.

So what can be done about this macular edema? Eventually it may go away on it's own, but it could take around a year to do so. With the risk of further damage to my retina, the doctor wanted to intervene. There's this drug called Avastin (bevacizumab), which was originally approved by the FDA to treat colorectal cancer. It's now used for some other cancers as well, like lung cancer. It's actually not what you might think of when you think of a drug; instead, it's a purified monoclonal antibody that binds to a molecule called VEGF (vascular endothelial growth factor), something that is needed for the formation of new blood vessels.

While it's not approved by the FDA for use in the eye, Avastin also helps with macular degeneration and macular edema. Interestingly, the drug company Genentech has a very similar drug called Lucentis which is FDA approved for treating disorders of the macula, but it costs about 40 times more (~$1600-2000 per dose). Genentech tried to keep doctors from using the cheaper drug to treat this eye condition so that they would instead have to use the very similar, but much more expensive drug. Luckily the eye doctors fought back really hard and are now still able to use Avastin to help save people's vision.

Anyway, to treat other cancers with Avastin, you would get a systemic injection, right into the arm like a normal injection. To help in the eye, however, Avastin needs to be injected....right....into....the eye, an intravitreal injection. I told the doctor that if this would entail numbing the back of my eye, I would have to punch him. While this injection wasn't nearly as bad as the one that caused my vasovagal reaction, it still wasn't an awesome thing to get.

They numbed the surface of my eye with some anesthetic gel for a while, disinfected the skin around my eye with Betadine (that orangey-colored stuff), then they also had to put a diluted Betadine solution into my eye. While I can appreciate the need to keep any sort of infection out of the inside of my eyeball, the Betadine was really uncomfortable once the numbing stuff wore off. It felt like my eye was slightly on fire for the rest of that day, right up until I went to sleep. Luckily it felt fine when I woke up.

So after the Betadine in the eye, the doctor injected some Dexamethasone (anti-inflammatory steroid) and Avastin into the eye, with two different injections. He did this just on the upper-left side of my iris. I felt only a mild-medium prick with each needle, otherwise it just felt weird knowing that there was a needle going directly into my eye. Then they flushed the surface of my eye out for a long while with saline to try to get all of the Betadine out. Despite about 5 minutes of flushing, it still burned for the rest of the day. It also made that eye water heavily for several hours, and messed with my sinuses (stuffy yet runny left nostril) for the rest of the day.

So now I'm back to two eyedrops (an antibiotic and a steroid) four times a day for the next four days. Yes, Angel still has to put them in for me! ;) The steroid drop is a milky-looking drop, and the weird thing about it is that it leaves a pretty gross taste in the back of my throat. Some of the drug must make it all through my sinuses and into my throat. I also have another follow-up in a month to see if some of the swelling has improved.

A few other random tidbits:

1. According to the American Cancer Society, eye cancers in general are by far the most rare type of cancer I could have possibly gotten. Out of the 1,529,560 estimated new cases of cancer in the US this year, only 2,480 of them will be some type of eye cancer (0.16% of all cancers). About 1,800 of those will be a choroidal melanoma (0.12% of all cancers). By comparison, breast cancer will account for about 209,060 new cancer diagnoses this year (13.67% of all cancers).

2. I've always had this thought, but it's gotten a lot stronger recently. Having had to deal with a cancer that I did nothing at all to earn, I can't help but wonder about the sanity of people who choose to do things that are absolutely known to cause cancer. I'll never understand that type of idiocy. Why would you purposefully bring that on yourself?

3. I've been taking that herbal supplement that I mentioned before (Essiac tea) for a little while now. It's only 4 ounces of tea for each dose, but it tastes pretty gross, and it's hard to get it down.

Biopsy results are in...good news!!

Some of you probably know from Angel's Facebook post, but I got a call yesterday from Dr. Char's office saying that they had received the results of the molecular and genetic characterization of the tumor. Luckily, mine is considered a Class 1 tumor. Basically, this means that my tumor is less likely to metastasize than if it were a Class 2 tumor. This is very good news, because if it does spread, this type of cancer is very difficult to treat, and unfortunately the statistics are not very good. Despite this finding, I will still undergo continued full body scans and liver function panels, probably forever.

Angel and I had a silly, brief session last night to make fun of how weak and stupid my tumor is...it can't even do it's job right! That had us laughing for a little while. :)

I've recently joined a couple of online forums and email lists for people who have choroidal melanoma or have had it in the past. It's another great source of information and support, but there are also some sad stories. Some people on the list have not had the good news that I've had, and are struggling with a much tougher fight than I've dealt with. My thoughts are definitely going out to them.

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.

1st treatment

We picked up my mom at the Sacramento airport Sunday night, and then checked in to a really nice suite that Angel’s uncle and aunt John and Gail put us up in, right in downtown Sacramento. We’re right next to the drawbridge that crosses the Sacramento River, and right down the street from the state capitol building. John and Gail, if you’re reading this, thank you so much, this place is great. And there are some other pretty nice perks of this place…free breakfast every morning (a really good breakfast, too) and free cocktail hour (two hours, actually) every evening. Come to think of it, we had free breakfast and free cocktail hour the whole time at Ben and Katherine’s house too. Pretty awesome!!

We woke up Monday morning, had a nice breakfast, then hit the road. We first drove down to the UC Davis campus to make sure we knew where to go and where to park for our 4:00 appointment. We followed the directions through the campus, and as we made the last turn to the Crocker Nuclear Laboratory, there was a fire truck, a police car, and an ambulance at the back of the building. That was a great sign, huh?!

Once we made sure we were in the right place, we headed down south a little bit to visit…the Jelly Belly factory! It was a pretty neat tour, but there should have been an opportunity to ask questions. For example, “how can you say that buttered popcorn is one of the top three best-selling flavors when it obviously sucks?” At the end of the tour there was a tasting area where you can try all the flavors you want. They also sell discount bags of Belly Flops, the reject pieces that aren’t awesome enough to deserve the final Jelly Belly stamp. I’ll still enjoy eating the ugly ones!

From there we hit up an olive oil and vinegar tasting, which was pretty neat, then grabbed lunch and took a brief nap in the car before heading back to UC Davis for our appointment. Rounding that last corner this time, we noticed that the emergency vehicles were gone, which was a pretty inviting sign. We waited a while in the lobby before being called back to get the show on the road. We walked through the very industrial-looking building, past the proton accelerator, and around the corner to the small eye patient treatment area. Remember, this is not a medical facility; it’s a nuclear research laboratory in the middle of a college campus.

First, more dilation drops in my eye, and then a crap-load of numbing drops to numb my eyeball and my eyelids. I took a seat in the chair as they prepared to strap me in. Even with the eye and nose holes cut in the mask this time, it’s still a little unnerving having your head locked into such a restrained position, so tightly that my cheek fat was squeezing over the edges of the mask. The bite block was next, then a series of x-rays to make sure I could get my eye (and the tantalum rings) into a position that would match their 3-d plan. Angel and my mom were in the room up to this point getting these pictures, but then they had to leave to another area.

Next Dr. Mishra installed the eyelid retractors. These weren’t highly painful, but a sort of mildly painful, really weird feeling. Back to the emergency vehicles we saw earlier…an earlier patient in the day started feeling nauseous when they tried to put in her retractors, so they let her rest in the waiting area for a while. During this time the patient’s mom got light headed and passed out. At least the proton beam didn’t go crazy and start shooting people!

I have no clue how far my eyelids were stretched, but it felt pretty far. After it was all over I asked Dr. Mishra if she would take a picture at my next treatment. She laughed a little like she thought I was weird for wanting to see that, but she said that she would take the picture. With the eyelid retractors in place I had to rotate my eye as far up as I could to see the flashing red light and hold it there while they did more x-rays. I think I need to exercise my eyeball-moving muscles or something, because it was hard to hold it in that position for very long. Once they verified that my eye was in the right position, someone in another room drew a circle around my pupil on a monitor that was showing a zoomed-in view of my eyeball. That would be how they could tell if my eye was moving too much and they would have to shut the beam off. Angel and my mom were able to watch everything from a set of four monitors showing different angles.

Everyone left the room when the treatment was about to start, and Dr. Mishra talked to me through an intercom system. She told me when the beam would start, and then she gave me several more updates throughout the 90 seconds that the beam was on, so I knew how much longer I’d need to focus on not moving my eye.

When the time was over, they came back in the room and released my head so I could swallow and take some deep breaths. That was it! Only about 20 minutes total. I then got another eye patch to keep on for 30 minutes, just to make sure I didn’t scratch my eye while it was numb.

I felt nothing at all as the beam was on. For all I know they could be trying to kill the tumor with a placebo effect! Just kidding, I’m sure they wouldn’t do that. I didn’t feel any side effects other than a headache. So really, I’m very lucky for having a cancer that can be treated with a proton beam rather than plaque radiation or with chemotherapy. Many other people have had much more difficult challenges. With how easy this is it almost feels like I’m cheating!

Not much to update...

Not much has happened on the medical front since the last post. Angel gives me two eye drops three times a day (pathetic, I know, I’ve never even been able to put Visine in my own eye). The bottle with the white cap doesn’t hurt, the one with the red cap stings real bad for a few seconds. Then there’s the goop she puts in twice a day. Because of these, my left eye vision is 100% blurry all day, all night.

I thought I’d mention a few more things we learned when Angel and I were talking to Dr. Mishra the other day. When this all started, a couple of people (namely Angel and my mom) asked whether the indirect lightning strike from a few years ago could have had anything to do with this eye cancer. When that lightning flashed, it was by far the brightest thing that I had ever seen. Dr. Mishra thought it was very interesting that we brought that up. While she couldn’t say for sure (obviously) that it was causal, she did mention that arc welders (who see bright lights very regularly) are 7 times more likely to get choroidal melanoma than someone who’s not an arc welder. She also said that she’s seen more pilots with choroidal melanoma than she would expect to see. Is it possible that pilots see bright lightning flashes or other bright lights as well? There may be something to this, but maybe not.

She also told us that despite what we had read online, the chances of typical radiation side effects are very low with proton beam therapy. So hopefully no fatigue, no feeling sick, none of that crap. If she has to shoot the beam through my skin, it will feel like a bad sunburn in that spot. If she can’t get my eyelids out of the way, those eyelashes will fall out permanently. If she has to shoot through the important pieces in the front of my eye, I will probably have eye problems (glaucoma, cataracts, etc.) sometime down the road.

We also learned that the loss of vision that I’ll most likely experience won’t be immediate; instead it would be pretty gradual. In fact, it might take as long as 5 years for the full effect of my vision loss to be complete. We thought that was pretty cool because then my brain will have time to adapt as things change. In the end, even if I just have peripheral vision in the left eye, that should be enough information to add a third dimension to my overall vision. But again, most of these statistics are based on the typical choroidal melanoma patient, which is someone in their 60s or 70s. About 2% of patients with choroidal melanoma are around age 30 or lower. So out of the ~1800 people in the US that get it each year, about 36 of them are around my age or younger.

The only other thing that I can think to mention today is an herbal supplement called Essiac. It’s a blend of herbs, believed to have some anti-cancer properties, that was discovered by a Canadian nurse named Rene Caisse (the name is her last name spelled backwards). Angel’s cousin first brought it to our attention, and she had several stories about the effectiveness of Essiac in helping to control, or even get rid of, cancer. Online you can read lots of anecdotal stories about Essiac working its magic.

There are a few scientific studies showing that in cell culture experiments with cancer cells, Essiac has an anti-growth effect. But, there are also a few studies showing that it has no effect. It seems like it really hasn’t been studied enough to be able to say for sure, but I doubt that it could hurt anything. We bought a bottle of it in San Francisco the other day, but I haven’t started taking it yet. Because proton beam radiation damages the tumor cell’s DNA by oxidative damage, it’s not a good idea for me to be taking anything with strong antioxidants while undergoing radiation. I do plan to take it after I’m done with that, however.

Yesterday (Saturday) we drove to the coast with Ben and Katherine. We tried to go to Bodega Bay but a fire had the road closed. So we re-routed and went to Blind Beach, near the town of Jenner. It was a beautiful beach surrounded by big cliffs, with large rock formations out in the water. It was Duke’s first time playing in the ocean and he had a great time.

Angel and I are heading up to the Davis/Sacramento area later today, then radiation starts tomorrow!

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.

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.

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!

More tests, and driving to San Francisco

Okay, it’s now Thursday evening. We are still driving on the way to our friends Ben and Katherine’s house outside of Berkeley. I think we’ve got about 2.5 hours of driving left, which will get us there in just under 12 hours, including a couple of pit stops.

I forgot to mention a couple of things in the last post…when talking to Dr. Low, he cleared up some misinformation that we had. When the retinal specialist first measured the tumor, all he told us was that it was 5mm, but he failed to mention what dimension that was. It turns out the tumor is 9.5mm in diameter, and 5mm thick. I also made it sound like Tuesday was a pretty lame day, but that’s the night that C&S threw me the “Surprise! Jeremy has cancer!” party. So that was a really fun night.

So Wednesday morning my mom met me to get the EKG at my primary care physician’s office. I told Dr. Zwerin and his staff thank you for taking me seriously and for getting me in on such short notice to the retinal specialist. Also, one of Dr. Zwerin’s staff is Lori Haro’s (sorry, can’t remember your married last name) mother in law. Hi Lori! The EKG was normal. Then, I had to have more blood drawn because to get cleared for general anesthesia there were two other liver enzymes they wanted measured that weren’t part of the standard liver panel. That was another hour spent waiting at Sonora Quest.

By about noon Wednesday, the PET/CT still was not approved by insurance, so we went ahead and scheduled the MRI for that afternoon. That was much, much louder than I was expecting it to be. Luckily it was pretty short (~30 minutes). It’s easy to hold your body still for that long, but much more difficult to hold your eyeballs still. Since it was a brain and eye scan, I had to do my best. I also got that data on CD. Here’s one of the pictures.

We got home and started filling out the paperwork for the San Francisco doc’s office, as they wanted it ASAP. My mom and Angel ran to Walgreens to pick up some extra sensitive dental care products (thanks to Patti for the suggestions!) while I ran to Kinkos to fax the paperwork. While trying to get that done I had a crazy flurry of phone calls in about a 10 minute span at about 5:15pm.

1. Maria from Dr. Low’s office saying the PET/CT had been approved after a call from Dr. Low to the insurance company’s physician. I had to tell them that the timing probably wouldn’t work out because in order to drive to SanFran in time to make our Friday morning appointment, we’d have to leave Phoenix by 9am Thursday at the latest. Maria said she’d try to find out if I’d be able to get the scan done in California.

2. Dr. Low himself called to say that the MRI results confirmed what we had hoped…nothing in the brain (yay!!). The optic nerve hadn’t been compromised. The MRI confirmed the diagnosis of a choroidal melanoma that was causing retinal detachment. I still don’t have an answer as to how close the tumor is to the optic nerve. This is important because the likelihood of retaining vision after radiation is inversely proportional to the distance between the tumor and the optic nerve.

3. Maria again, calling to say that the SimonMed staff was willing to come in super early to get my scan started so that we could still be on the road by 9:00am.

4. SimonMed staff confirming that I could check in at 6:45am.

That was a stressful little burst of activity. You can’t eat too many carbs the night before a PET scan, so we went out for a steak, lobster and steamed broccoli dinner. Then we packed our clothes, snacks, and Duke’s stuff for the road trip.

Thursday morning , we woke up early. Angel dropped me off at the imaging place at about 6:30, then went home to pack the car and get the dog. When we were sitting in the parking lot for a minute we saw an old guy wheel in a small, heavy box marked with a radioactive label, which I knew was for me. I think the box was encased in lead, because he had a hard time getting it up the stairs. I got signed in and went in the back for a nice injection of radioactive material. FDG, fludeoxyglucose, is basically a glucose molecule modified to have a radioactive fluorine atom on it in place of one of the hydroxyl groups. I got the injection, then had to lay in a recliner in a pitch black room for an hour to let it disperse throughout my body. I got a decent little nap during this time.

Laying in the PET scanner was much more peaceful than the MRI, because it was quiet, but I’d hate to be any large than I am and have to go in there. Both my shoulders and my elbows scraped the walls of the tunnel as I slid back and forth through it. I couldn’t fall asleep in there because it was too uncomfortable.

I got that data on disc, then Angel picked me up and we hit the road. That pretty much brings me up to date on the blog.

So, what’s going to happen in San Francisco. This is where the perfect timing that I mentioned before comes into play. It’s looking like my treatment is going to be proton beam radiation, rather than the standard plaque radiation. Plaque radiation is where they sew a little shield onto the back of my eyeball and tuck some little seeds of radioactive material into the pocket. The shield is meant to protect surrounding healthy tissue from the radiation. Proton beam radiation is a more sophisticated technology, where a beam of energized protons is basically shot through the front of my eye and is targeted to the tumor. This can be focused very precisely, and the beam of protons has very little sideways scatter. This is becoming a more common treatment for cancers where nearby tissue is very delicate, for example the eyeball.

The main drawback with proton beam therapy is the expense. The proton accelerator itself costs about $150 million. So, there are only 6 of them in the US right now. One is at UC Davis in Davis, California. Dr. Char, who is based in San Francisco, has access to this equipment for his patients for one week, every six weeks. His next week on is September 27^th – October 1^st. Prior to radiation there is a surgery that needs to be scheduled, which he only does on Mondays, leaving September 20^th as the only option. Prior to surgery, an office visit is needed where Dr. Char will review all of my results, dilate my pupils and take a look at my tumor himself. He only does these appointments on Tuesdays and Fridays, leaving September 17^th as the only option. So as I mentioned, if this had to happen, the timing couldn’t have been better.

The surgery on Monday is going to entail sewing some small metal rings to my eyeball, I assume to help guide their aim of the radiation beam. I’m doubtful that they’ll be willing to do it, but I’m going to ask if they can take some pictures of the surgery so I can post some of those as well.

Peace out everyone, I’ll update more later on.

Getting some results and plans...

First, a special thanks to Chad and Stacey for throwing me a pretty awesome party the other night to wish me well. It’s pretty amazing how many people showed up, despite the fact that it was put together at the last minute. Thanks to everyone who was there, and to everyone who wanted to be there! TJ made me realize that in my previous blog posts I never mentioned how I was feeling physically. Good point, I’ve been feeling great, like nothing is wrong at all.

My last post updated through Sunday, but so much has happened since then. Right now it’s Thursday morning, and Angel and I are in the car driving to California, so I thought I’d work on some updates. Typing is going slow, because I’m trying to watch the road as well while Angel sleeps. Just kidding, she’s driving! Those who were at the party that Chad and Stacey threw for me the other night know why we’re heading to California already, but for the rest of you…here’s why!

Monday morning I had a chest x-ray, from two views. The girl had to re-do one of them because my lungs are longer than she thought they would be. I got the data on CD, but apparently they don’t just give you the images in any standard file format, so I haven’t seen them yet. From there we (Angel and my mom were with me J) went to the Sonora Quest lab to have some blood drawn for the liver panel, blood count, metabolic panel, etc. We had to wait at the lab for over an hour, and during that time I was on the phone a lot.

Luckily for me, I’ve worked closely with several well-respected and well-connected physicians for about the last 10 years, namely Richard Herman (neurologist), Jerry Targovnik (endocrinologist) and Laurence Miller (gastroenterologist). They have all been pretty concerned for me since I told them what was going on, and they’ve been very helpful in offering to get me in to a number of places that would offer great care. They also called in some favors from some of their friends. Also, our good high school friend Michelle Lai is a diagnostic radiologist at Barrow Neurological Institute, and she’s also been very helpful in giving me her opinions and putting me in touch with some of her friends.

I talked to Jerry Targovnik while we waited at the lab, who told me that he’d arranged for me to be seen at Southwest Hematology and Oncology. His close friend Jeff Isaacs was out of town, but he arranged for his colleague Boo Ghee Low to see me that afternoon. I called his office and made an appointment for 3:15. Targovnik also told me that everyone he talked to thought I should get to San Francisco to be treated by a friend of a friend, Devron Char. I knew nothing about Dr. Char when I called his office, but it was sort of a cool feeling when his assistant Julie asked for my name and then said “Hi Jeremy, I’ve been waiting for your call. Let’s get you an appointment for Friday morning.” I didn’t yet realize how lucky I was that the timing of everything was working out this way.

After the phone calls were done Angel googled Devron Char and came up with this tidbit: “Dr. Devron H. Char is a pioneer in the diagnosis and treatment of patients with eyelid, conjunctivital, iris, retinal, choroidal, orbital tumors and patients with thyroid eye disease. He has been listed annually as one of the ‘best 400 doctors in the United States.’ Dr. Char has written over 300 medical articles and six books including the basic textbook on ocular oncology. He has served as an editor or reviewer on medical journals in basic cancer research, eye research and clinical eye care. Dr. Char is the founding director of the Ocular Oncology unit at the University of California, San Francisco, Medical Center.”

It was about this time that I started thinking about how fortunate I’ve been to have these connections. It almost seems unfair to the people who have to go through something like this without knowing anyone who can help. This thought has been continually popping into my head.

We made it to Dr. Low’s office for the afternoon appointment. His nurse told me that he had received the results from my chest x-ray, although she didn’t know what they showed. She did, however, give an interesting smirk that made us think she did know the results but didn’t have a very good poker face. We waited another 15 minutes or so with sweaty palms, awkward silence, and some nerves, wondering what the results would show, because at this point we had no idea whether the cancer had spread.

Dr. Low had obviously reviewed all of my info before coming in to talk to us, and he asked what all I knew. I told him that I knew I had a choroidal melanoma in my left eye. He started asking if I’ve recently starting having any pains in my chest or abdomen. My palms were sweating even more thinking about what the x-ray results would be. He finally said that the x-ray showed nothing abnormal in my chest (except some small benign granulomas on the bottom of one of my lungs). Seemed weird for him to ask me that when he knew I was waiting for those results. I guess some people are just oblivious. He also said he wanted me to get an MRI of the brain and a full body PET/CT scan, both of which needed pre-approval from my insurance, but he assured me that he would get them to approve both scans.

So, we went home to wait for more information.

Tuesday was pretty uneventful until the afternoon. Dr. DeSouza (the retinal guy) called to let me know that the liver panel came back with all of the enzymes in the normal range. I got the new patient paperwork from Dr. Char’s office, and was also told that I would need a few things in order to be approved for general anaesthetic. So, I got an EKG scheduled for the next morning at Dr. Zwerin’s office. And then at 5:00, Dr. Low’s office called and said that the MRI had been approved and would be scheduled for the next day, and the PET/CT was still pending approval. Apparently they were hesitant to approve such an expensive test without having pathology results. That, however, would entail a biopsy, and taking a biopsy of the inside edge of the back of an eyeball is something that doctors tend to avoid.

More in the next post…