A few tidbits...

Hi all. A few minor changes you may have noticed...on the right side there's now an option to follow this blog by email, which I'm assuming means you'll get an email whenever I post something new. Also, I have a couple of links to some other blogs from cool people I've met online because of this cancer. Their blogs have tons of good information and resources for eye cancer patients, as well as just some interesting reading about people and the way they think about and deal with crappy things that sometimes happen to us. If you have some down time, I recommend taking a look at their blogs.

In my previous post I included an image that shows approximately what I see out of my left eye, compared to what my normal eye sees. After uploading the animated gif, however, I realized that for some reason, Google's blogspot doesn't support animated gifs. I ended up putting the image up here, in case you wanted to see the animated version. The flickering spot in the left side of my vision seems to be represented pretty accurately. I also tried to include one of the flashes of light that I get to see all the time. I'm going to have to admit that I'm not going to be winning any awards for computer animation in the near future (the animation of the flash of light is really hokey). These light flashes are sort of like snowflakes...no two are alike. The example I included will give you a general idea of how they appear to me. Sometimes they are different colors, sometimes they move faster or slower, and there are anywhere between 1 and 4 flashes I see simultaneously. I'm pretty sure that they only appear and travel throughout the dead part of my vision, which I find to be pretty interesting.

I've mentioned several times that if this type of cancer metastasizes, which it does about 50% of the time, it is universally fatal. No one has beat it yet. One of my online cancer friends, Sarah Elizabeth (the one who has the [Love x Infinity]^2 blog that I've linked to), is dealing with that realization right now. She gave an excellent interview to her local NPR station in Virginia (link here) that I recommend listening to if you have some time. The recording starts with some station announcements, so if you jump ahead a little bit, her interview starts at 2:10. Her interview is about 15 minutes long.

I hope everyone is doing well. More to come later...

One year and counting...

Well, it’s about time that I update this thing. I haven’t posted anything in about 4 ½ months. Also, today is my one year anniversary since I was first diagnosed with choroidal melanoma. It feels like it’s been so much longer than that, to Angel and me at least.

When I last wrote I was right in between two MRI appointments: one where there was an interesting spot that showed up on my liver, and the follow up MRI that all of the radiologists requested, just to make sure that the spot wasn’t an aggressively growing metastatic tumor in my liver. After the follow up MRI, we were very happy to hear that the spot appeared to be the exact same size, so it was likely really just an atypical hemangioma. From here on out, I am still planning on having an abdominal MRI done every 6 months. Since my last one was in mid-April, I’m looking at mid-October for my next.

Also since my last post, I’ve had a couple of eye appointments with Dr. DeSouza in Mesa, and one trip to San Francisco for a follow up with Dr. Char and his team. The consensus: my tumor is ever-so-slowly continuing to shrink, which is news I’ll take any day. On the other hand, when Dr. Char last saw me in early July, he said that he was starting to see early signs that the radiation damage to my retina was setting in. He wanted to see another fluorescein angiogram to see if there were a bunch of new blood vessels or not. If there were, it would be time for another Avastin injection into the ol’ eyeball. The damage wasn’t advanced enough at that time, but he did tell me that my extra visual loss was on its way. Remember, during my radiation treatment my entire macula (responsible for focused, central vision) was blasted by the proton beam, and part of my optic nerve was hit as well. Dr. Char told me that I should contact his office when I notice any visual changes setting in.

It was about two weeks after we got back to Phoenix that I started noticing the changes. It’s a little hard to describe, and the changes are definitely most obvious when I’m looking at text or at something that has organized lines (like window blinds, for example). The best way to describe it is that in the lower half of my visual field, I now have a bunch of small spots that appear to be smudged. The smudges would probably also be visible in the upper half of my visual field, but I cannot see anything up there :). Here’s an image that shows approximately what I see out of my left and right eyes (click the image for a larger view):

This is an example of approximately what I would be seeing if I were staring directly at the word “Denny” in the center of the page. First, notice that the image is slightly squished in the vertical direction. Second, notice the big black cloud that most of you probably don’t see. Third, you probably notice the little flashing piece off to the left (actually, after posting the blog entry the flashing part doesn't seem to be working right now...I'll have to try to figure that out later). All of those visual tricks have been with me for a long time now. The new change is the smudges that surround my focal point and continue into the bottom portion of the image. Also, I didn’t include all of the cool flashes of light that I get to see all the time. Of course normal vision would also see other surroundings around the book, but I don’t have a wide-angle lens on my camera :).

About a week after I started noticing the smudges I contacted Dr. Char’s office, who reported back that I should get in to see Dr. DeSouza within two weeks. I assumed that since the visual changes were setting in that it would then be time for some Avastin to try to slow down the damage. Dr. DeSouza proved my assumptions to be incorrect. Avastin would be used to prevent neovascularization (the formation of new blood vessels), which is not yet occurring in my eye. Instead, I’m growing some cotton in my eye.

I have what they describe as cotton wool spots. These are caused by retinal nerve fiber layer microinfarcts, which means that some retinal nerves are failing to receive a blood supply, due to small microvessels dying off as a result of the radiation I got. When the nerves fail to get their blood (the carrier for nutrients and oxygen), the nerves themselves die and essentially puke out their cytoplasm. This puke sticks around in the eye and looks like little pieces of cotton. These are my little puke spots:

There is not really a treatment for these cotton wool spots directly, it’s best just to treat the underlying condition (diabetes and hypertension, for example, can cause these spots). In my case, the underlying condition is radiation damage, so obviously nothing can be done to treat that. I’ve got Stage 1 radiation retinopathy so far according to this chart (http://www.eyecancer.com/research/Research.aspx?nID=76&Research=The+Finger+Classification+of+Radiation+Retinopathy&nResearchCategoryID=1&sResearchCategory=Articles). As it progresses, and specifically once it gets to Stage 3, I will become a candidate for Avastin injections once again. I’m not sure of the normal rate of progression of radiation retinopathy, but I assume that it may be fairly quick, as Dr. DeSouza scheduled my next appointment for 2 months after my last one. I should know more in mid-October.

The visual acuity in my left eye still measures at 20/20, but rather than reading the whole bottom line in the eye chart with ease, as I can do with my right eye, this time I had to look at each letter individually in order to read them with my left eye.

I’ll let you know when I know more. I hope everyone is doing well. Thanks for reading!

It keeps shrinking, time for body scans.

I meant to update this thing a few weeks ago when I again had new news to share, but it’s sometimes hard to make time to sit down and write everything down. As I write this, I still feel great. I’ve started exercising again, which is nice because I feel like crap when I’m inactive. I still see the flashes of light all the time, several times a minute. I’ve had no choice but to just get used to them, so that’s exactly what I’ve done.

I’ve got a couple of noteworthy updates, and a funny story, since my last post back in January. I had an appointment with Dr. Desouza (local retinal specialist) on February 11, just to assess any possible visual changes and to take some ultrasound measurements of the tumor. Going into the appointment, I could tell that my visual field had not yet improved, but that the quality of my remaining vision had improved. This was verified by the doctor; in fact, the vision I do have in the left eye measured back at 20/20 again at that appointment. I think this determination was made based on the fact that I could read the lowest line on their eye chart with the left eye. While I could figure out what all of the letters were, they weren’t exactly in focus like they were with my other eye. So either that 20/20 concept is a very, very rough estimation of how good your vision is, or my right eye has much better than 20/20 vision.

It was obvious during their visual inspection that my retinal detachment had completely corrected itself, as all of the subretinal fluid was gone. So now, the only thing keeping my retina from its original shape is the growth underneath it. To me, it’s interesting that my visual field hasn’t improved knowing that most of the retina is back in place. And I guess I still see the flashes because that part of my retina is still being stretched somewhat due to the tumor being there. The ultrasound measurements indicated that the tumor had continued to shrink. Dr. Patel (intern? fellow? I can never remember which is the correct term) measured the maximum thickness this time at 4.1mm, while Dr. DeSouza measured it at 3.7mm.

Angel and I talked to him about our desire to actually have follow up testing, despite Char’s input. Since it had been coming up on 6 months since my original diagnosis, Dr. D ordered a chest x-ray and blood work for a liver function panel. We told him that based on everything we knew, we wanted an MRI of the abdomen (focusing on the liver). He wanted us to go ahead and get the x-ray and blood work, and come back in six weeks to have a discussion about the MRI. His thought seems to have been that if we had these sensitive tests, and had false positives show up, we’d have to deal with the consequences of that: the emotional (stress, etc.) and logistical (what to do next, biopsy, etc.).

A few days later on February 14^th I had an appointment with Dr. Zwerin, my PCP in internal medicine, just related to a persistent sore throat that I had (which is now long gone). While there, I talked to him about MRIs to follow up on this eye thing and he must have agreed with me because he gave me a prescription for an MRI. No offense to Dr. D, but I’d rather just have the test than wait another 6 weeks wondering. Interestingly, something seems to have changed in my insurance plan so I didn’t even need pre-authorization for the MRI this time.

So, I had the chest x-ray and blood draw on a Thursday, then had the MRI on a Saturday morning. Chest x-ray results were normal: no sign of metastasis, both lungs appear symmetrically aerated. A granuloma (apparently harmless little mass…the term granuloma seems to be somewhat useless because it’s used so generally) within the base of my right lung appeared stable compared to my x-ray in September. I didn’t even know I had a granuloma…guess I forgot to ask for a copy of that x-ray report. The blood work also came back with all liver enzymes in the normal range.

The Saturday MRI appointment was interesting. I went to a new place I hadn’t been to before because they were open on Saturday, and they had a 3 Tesla MRI machine (stronger magnet than the one I was in previously). They asked if I had any metal implants, so I had to disclose the tantalum rings on my eyeball. Understandably so, the MRI tech was hesitant to let me jump in the machine with no paperwork indicating these rings were safely compatible with a 3T magnet. I had to use my phone to pull up some articles on Pubmed to show him. I’m appreciative that he was cautious about this…better safe than sorry. The MRI went well. The bolus injection of contrast agent (Eovist, a relatively new contrast agent, still based on the standard gadolinium) went smoothly this time and didn’t cause the needle to pop out of my vein and give a large, somewhat painful subcutaneous injection of contrast agent like the last one did, so that’s always good. The MRI machine is programmed to take a series of images before the contrast agent is injected, and then to repeat scans at very specific intervals after injecting the stuff. This gives the docs an idea of how the Eovist is traveling into the liver and being taken up by the hepatocytes. In a soothing female voice, the machine repeatedly said “Hold your breath.” I would inhale and hold it. Then after 20 or 30 seconds, “Relax.” Luckily the tech had told me beforehand that “relax” meant “breathe,” because I wouldn’t have thought that was obvious. As the magnet is on and clicking away, the MRI tube turns into a mild wind tunnel. According to the tech, the 3T magnet is so strong that it can actually have an effect on your body temperature, so the superfan kicks on to keep things cool.

I got the data on disc and had the radiology report sent to Dr. Zwerin. I made the mistake of loading up the data on my computer and looking at it, and I was thinking “Hmm, I wonder what that spot is. And that one.” If you find yourself in that situation, don’t do a Google Image search for liver metastasis and try to compare with your images. It’s just not a good idea if you aren’t trained in what you are looking for. Anyway, on Tuesday I had my doctor fax me the official report. It basically says that there are some small benign cysts in my liver, a couple of hemangiomas, and one other spot that is likely an atypical hemangioma. Based on my clinical history, the radiologist is recommending a follow up scan just to make sure that nothing is changing size.

By the way, a hemangioma is basically a benign growth of blood vessels that has no known cause and almost never requires intervention. I thought about it for about 30 minutes after reading the report, and then decided to send an email to Dr. Takami Sato’s care coordinator. Dr. Sato is in Philadelphia, and he is widely considered one of the leaders, if not the leader, in the treatment of metastatic ocular melanoma. I sent Renee a quick note briefly explaining these findings, and asked her if, from their experience, liver metastases are ever primarily misdiagnosed as hemangiomas. Remember, while the likelihood of this being a metastasis is very low in my case, about 50% of these things do metastasize and in 100% of those cases, it is fatal; it’s just a matter of how long you can fight the good fight. I’m not trying to sound over dramatic, I’m just trying to emphasize why I really thought time was of the essence when it comes to knowing something. Renee wrote back to me very quickly (she is so awesome that she wrote me back within minutes, from home, on her day off) to suggest that I send in as much of my data as I could get to Dr. Sato’s office for his team’s review. They meet every Monday to discuss new cases and updates on old cases, and Renee needs everything by the Thursday before to get all info entered into their hospital’s system so it’s ready to review and discuss. So I made a bunch of phone calls and sent a bunch of faxes (I think it’s embarrassing that so much business is still done by fax these days…what old technology) over the next couple of days.

I should mention that I did all of this, stupidly, without telling Angel that I had even heard back about the MRI. My intentions were good, as my thought was to protect her from any worry until I knew whether there was really something to worry about. But keeping that secret was actually stressing me out more than wondering what the unknown spot was. On Thursday I ended up sending an email to the Ocu-Mel listserv asking for their thoughts and quickly got a bunch of responses, the average of which was, “You’re smart for seeking a second opinion from Sato, but you’re dumb for keeping this from your wife.” I ended up going right upstairs and telling Angel what was going on, and that there was really no reason to worry at this point. Note to self: no more medical secrets from Angel.

Dr. Sato’s team came back with pretty much the same assessment…the unknown spots are most likely hemangiomas, although based on the slightly strange enhancement characteristics, they are not 100% sure. His team suggested a follow up MRI in 2-3 months using a more standard contrast agent, Magnevist or Multihance. Apparently he prefers to see an MRI with Eovist when assessing liver metastases, and with Magnevist when assessing hemangiomas. I’m going to push for something closer to the 2 month end of that spectrum, which would put me at getting another MRI in about 4 weeks from now.

Interestingly, the measurements from Dr. Sato’s team made each spot much larger than what the original radiologist said it was. The 10 mm spot on the original report became 18 x 15 mm. The 18 mm spot became 10 x 27 mm. One of the 4 and 5 mm spots became a 7 x 14 mm spot. Anyway, I thought it was interesting to see how much variability there was in those measurements.

Okay, this post is getting to be too long, so let me tell the funny story real quick. So at my last appointment with Dr. DeSouza, Angel and I walked into the exam room with Dr. Patel (the intern/fellow that I mentioned earlier). Dr. DeSouza stuck his head in the door real quick and said, “So, uh, big trouble in little eyeball huh?” and then smiled and walked away. If you’ll remember back to my second post, the main thing that I had mentioned about Dr. DeSouza was that Angel and I thought he did a pretty terrible job of giving us the bad news. Apparently he had recently started seeing another patient with the same cancer that I’ve got. That guy did some research about choroidal melanoma online and somehow came across my blog. His next appointment went something like this:

Patient: “So I did some research about this cancer and came across a blog that mentioned you.”

Dr. D: “Oh yeah?”

Patient: “Yeah, you should check it out, here’s the address.”

So, that appointment was a little awkward for Angel and I. I reiterated to Dr. D that I’m sure it’s difficult to tell someone they have cancer, especially when you work in a field that doesn’t get a lot of cancer. He ended up saying that he enjoyed reading about my story from a patient’s perspective. All-in-all everything was normal by the time the appointment ended.

It turns out that other patient, Larry, emailed me and we’ve been exchanging messages for a little over a week now. Angel and I are going to meet up with him and his wife for dinner sometime next week.

And that’s all I know for now. I should have more to update in about a month.

On a side note, my brother’s friends Kelli and Bob got some bad news last month when their very cute, very strong 2 ½ year old son Brody was diagnosed with acute myeloid leukemia, a particularly nasty form of leukemia. If you could send as much positive energy as you can muster over their way, I would appreciate it, and I know that Brody and his parents would appreciate it as well. Thanks to some of their excellent friends, a number of fundraising efforts are underway to help the family with medical bills. You can read more about their story and see if there’s something you can do to help by checking out www.brodyblagen.com.

It's starting to shrink!

Wow, it’s been 61 days since my last blog post. So little has happened since then! Well, actually, last Friday, the 7^th, Angel and I were in San Francisco for a 3 month follow-up appointment with Dr. Char. The gist of what we learned was that things are progressing pretty nicely. The sub-retinal fluid that had accumulated has pretty much all been reabsorbed, and there are signs that the tumor has started to shrink. The size of the tumor’s footprint hasn’t changed. Actually, as far as I could tell, they didn’t measure the size of the footprint, but from their experience they say that the footprint never changes so I think they sort of assumed that mine didn’t change either. However, the maximum depth of the tumor has decreased from 4.8mm right before treatment to 4.5mm. This was excellent and surprising news, as they rarely see any signs of shrinkage at the 3 month time point (must have been the cold swim my eye and I took right before the appointment).

The picture that I got this time was taken from a slightly different angle than last time, so it’s hard to tell anything by looking at the picture. It’s still cool to look at though, so here’s a comparison between the old and the new pictures.

New

Old

Interestingly, the amount of vision that I have in that eye hasn’t yet improved very much. On the visual field test, I saw an extra 6 spots this time that I didn’t see last time (79 out of 120 this time, so not very much of a change considering that a lot more of the retina is back in place now).

New

Old

That’s pretty much it for medical updates. We met some cool people in the waiting room at Dr. Char’s office and had some good conversation while my eyes were too dilated to focus on them. They actually come down to Mesa every year to watch some baseball. If you guys read this, send me an email when you are heading down…maybe we can get together for a beer or something.

Getting good news from the doc made the rest of the weekend much easier to enjoy. Thanks to Andy and Ellie for helping us out with an awesome place to stay. We got together with our friend Jessica for dinner at a sushi boat place (a bunch of sushi dishes float past you down a little moat-like thing and you grab what you want as it floats by. Angel and I got to visit Alcatraz, which is always a cool thing to see. We also had a great time with our friends Ben and Katherine, making a round trip across the Golden Gate bridge ON FOOT. According to Wikipedia, that’s a 3.4 mile walk. Then we had an incredible dinner at an Italian restaurant called Il Pollaio…the best rib eye steak I’ve ever had, along with some grilled chicken and grilled rabbit. I highly recommend that place.

That’s pretty much it for this update. I’ll see the retinal specialist in Mesa next month, then I’m due for some blood work, and possibly a scan of some sort in a few months. See y’all around!

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.