Simulation

My 2012 Halloween costume. I'll add some flair along the way.

For those I don't talk to on a super-regular basis, just so you know, I am playing catch up right now with the blog. Hopefully at one point I'll actually be current with this.

The next major step in my journey was my simulation. Besides the dental surgery (which actually happened the day after the simulation), this really was the worst day so far. The only reason the dental surgery was worse is because of the longer lasting effects it had. Heck, the surgery itself wasn't so bad, I was out cold the whole time.

The simulation though, was quite the interesting experience. The whole idea behind the simulation is to give you a ton of information, and run you through a CAT scan machine, get images of the areas they need to radiate, and get you prepped for said radiation.

The information was really quite interesting, but I'll get into that probably with the next blog post. This one, I'll just stick to what the simulation looks like.

So like I mentioned, a big majority of it is in a CAT scan machine. They have you put the stylish hospital gown on, inject you with a nuclear iodine (gives you a really metallic taste in your mouth, makes your whole body weirdly warm and heavy and really makes you feel like you wet yourself), and basically start scanning away.

It was interesting to watch the process though. I wasn't in the most comfortable of positions to be in- your head gets tilted back quite a bit, to really help expose your neck more. Your laying flat though, on the metal exam table, and they have a sheet under you. They would do a scan, come in, and move me according to what their scans showed. Now, it truly felt like they would move me an 8th of an inch to the left, rescan, then move me a 9th of an inch to the right, then a 7th inch to the left after another rescan, and so on. Then, after they were quite satisfied, they start marking spots all over your face with a marker, noting where the lasers are hitting exactly.

Once satisfied, they quickly tell you to close your eyes and take a deep breath. As soon as you do, they stretch a really warm material over your face as fast and as tight as they can. Once it's stretched, they really start pushing into all of the corners, folds, etc, until it is a good mold of your face. Once it's in place, they place cold washcloths on it to cool it down rapidly, making the mask harden. Once hardened, they tell you you can open your eyes, though the mask is so tight that it's nearly impossible to pry them open. They also mark the mask in the same spots that are marked on your skin, as well as marking where your eyes and mouth are. They take the mask off, cut eyes and a mouth hole, and the mask is good to go.

The last thing they did before the last and final set of scans is mark a spot on my chest where I will be getting a radiation tattoo. It's a small spot that will basically look like a freckle, that will help them to ensure that every time I am in radiation, I am in the exact same position as I was during the scan.

So this will basically be the exact position that I will be in for half an hour every day for four days a week for approximately 4 weeks.

Then it was time for the final scan. This was what made the whole experience bad. It was time for the mouthpiece mentioned and with photos in the previous post, to go in. I got that in place, had them put the mask over me, and thought I was ready to go. If only it were that simple. They also clamp the mask to the table, immobilizing my head, they also push your shoulders down, so that your neck is stretched probably further than it really should go, then clamp your shoulders in place. They also stick something under your legs (which actually made it a bit more comfortable) , but it helps keep your legs locked in place as well. If this lasted for only a few minutes, it would have been great. Apparently, though, this was the most important set of scans. about 35-40 minutes after having my tongue suppressed and my mouth stuffed with some plastic piece, my head under a mask and strapped to a table, my shoulders pushed way down and clamped into place and my legs immobilized, I finally got the relief of returning from the 14th century torture device they call a CAT scan machine.

There are still a lot of little details that they are still working out, and I have a few random appointments here and there still, but they now take a while to do the calculations, but until then, I get to get some R&R at our beach house, with my amazing wife. It's some R&R I definitely feel like I've earned.

I HATE dental work

This is the top of the mouth guard- you can see a larger slit in the front opening of it, near my thumb. This is where my tongue is supposed to be placed during the actual burst of radiation. While the radiation appointments are about half an hour, the radiation burst is only about 15 seconds, which is good, because the longer my tongue is there, the more I start to gag.

This is the top of it- kinda gives you an idea of how long it is. It really is a good few inches, and unfortunately, I have it in for about 20-30 minutes (basically the whole time) for my appointments. You really do gag pretty bad on it at first, but with some getting used to, it gets to a point of tolerable. They say by the end of this, this little thing will be like a friend to me. I don't care if it's plastic or not, I think by the end of this, I'll be ready to throw it in the fire.

So here's the long and short of it. The tumor was called a carcinoma expleomorphic adenoma. It is cancer. Fortunately for me, it is non-aggresive. They give me a 90% chance of beating it, in fact. I give myself a lot higher chance than that though.

After starting appointments a week late because of weather, I finally got into the UW cancer department, and am underway with treatment. It's an amazingly large process, and even just figuring out logistics is a bit of a nightmare.

My first real appointment was Monday and basically included a consultation with the doctor that I will be seeing. He described my treatment options, gave me as much information as he could and sent me on my way. I then had a dental appointment- something that I have been required to do due to the side effects of radiation in the area that I will be treated in.

The concern is that once I start radiation treatment, the bone along my jaw basically dies off. If I have any type of dental issues that would require a tooth extraction, or if the bone gets exposed in any way, I won't heal like I should. The dentists explained to me that just a simple removal of a tooth would include me spending half an hour a day for 50 days in a hyperbarric chamber.

Because of this, I was facing some pretty heavy duty dental work.  Not only did they create a dental guard that sits in my mouth for 20-30 minutes every time I receive radiation (it's terrible- 4 to 4.5 inches long, pushes my tongue into an awkward position and really triggers a fantastic gag reflex), they decided they needed to address 8 different dental issues in my mouth, including replacing a few old fillings, putting a couple more in, performing a root canal and removing my last wisdom tooth.

Apparently these decisions did not come lightly- I was told that a team of 8 dentists met for about an hour and a half just discussing what to do with me. I was told that in most people, much of this would never have been any issue, including the wisdom tooth, but with me, well, it was a different story.

At least all of the dental work is done. It honestly is what I was looking forward to the least. I was under general anesthesia for the work, which was fantastic, remember none of it, was given some good painkillers, and even got a strawberry milkshake on the ride home.

The diagnosis

The incision, and drainage tube, 3 or 4 days after the surgery.

A history- in November of 2011, I noticed a large lump in the back of my throat. The doctors thought it was a peri-tonsular abscess. I was placed on antibiotics for a month before going back into the doctor for having a hard time swallowing. After a cat scan, it was discovered that I had a tumor approximately the size of a tennis ball in the back of my throat. Since then, the world has turned itself upside down, and I've been fighting to get it back right side up.