Yesterday, I went and filled out the paperwork for my living will and power of attorney. My dad brought up that I should have all of that in place should the unthinkable happen and I'm glad I have it now. It's very weird to think about that kind of stuff, especially the kinds of questions that are in the living will document. It forces you to think about what you would want in the event of life prolonging treatment and so on. Would you want machines to keep you alive if your body could sustain itself? You're going to see and hear many Simpsons quotes from me, here's another (sorry for the bad quality, it was the only clip I could find on youtube) :)
Eventually, everyone should fill out these documents and think about these types of questions but I'll admit it is a little weird to do at 29. That being said, if you don't have these documents and have not thought about them, there is no time like the present to start doing it. None of us know when our time will expire and I believe it's better to have these questions answered ahead of time rather than letting courts settle it. Also, it's very easy paperwork to fill out. You really only have to think about where you want your assets to go and how you would want treatment to proceed in extreme cases. 10 minutes with an attorney signing documents and bam!, it's out of the way. I'm learning that you're never too young to have those things done.
To Everyone
I want to say that the outpouring of support since all of this started has really been amazing. I can't tell you how many comments I've gotten on Facebook, on this blog, and in person from people who I know and don't know who just want to say they are thinking about me. Friends of friends, co-workers, family, etc., it has really been amazing. It's very uplifting to know that that many people are thinking about you and wishing you well. It's lifting my spirits and I'm sure I'll need it as I get closer to surgery day (4 days and counting!). So, from the bottom of my heart, thank you to everyone!
I'm also still not that nervous about surgery, is that normal? Maybe it's just because I know they'll put me out and the next time I wake up I'll be in the recovery room and looking good (as usual). I'm sure it's much worse for family and friends waiting for results for hours on end.
I'm sure most of you reading this are aware of what has been going on with me the past few weeks, but for those of you who aren't aware, I'll start from the beginning....
The date was August 15, 1985, a day which would change the United States, nay, the world, forever....the day I was born! Ok, maybe that's too far back. Let's start about 7 weeks ago, early January 2015. That was the day I started having vision problems. I've always had 20/20 vision and have never had any issues whatsoever. But in early January I started noticing some issues with the peripheral vision in my right eye (specifically, the left side of my right eye...the nasal side). Basically, if I closed my left eye and looked at a digital clock and then looked just to the right of the clock, I couldn't see the clock with my peripheral vision. This appeared to be off and on for a few days so I didn't immediately go to the optometrist (Sarah, my fiance, let me hear about that decision later). Eventually, the problem stuck around and I went to an optometrist. The optometrist couldn't see anything wrong with my eyes but sent me to a retina specialist (ophthalmologist) in the event that there might be something wrong with my retina. A few visits with the retina specialist reveal nothing wrong with my retina. I was ordered to have a visual field test which essentially maps your visual field in each eye by having you concentrate on a single spot and clicking a button when you see dots in your peripheral vision. I don't have the specific printout of the visual field test but I'll do my best to recreate it below:
Ok, left eye is on the left, right eye is on the right. The black areas are where I can't see. Obviously, my right eye is much worse than my left but I was also having some issues in my left eye. Now, before everyone freaks out, I don't think the vision in my right eye is quite as bad as it looks. I can certainly see in some areas that the visual field test says I can't but it's definitely not good. Once the ophthalmologist saw this, he ordered an MRI of the head and orbits to attempt to see if there was anything going on with my optic nerve.
The MRI and Clinic Visits
On January 29, 2015 I had that MRI. Not really a bad experience if you aren't claustrophobic (which I'm not). I actually found it mildly relaxing despite the crazy noises that machine makes. The next day I got preliminary results that I had a roughly 1 inch tumor hitting my optic nerve and near my hypothalamus. Along with this wonderful news, there were also some unusual lesions on other parts of my brain but we'll get to that later.
Once we got that news, my dad and I started discussing places we could go to meet with neurosurgeons (Cleveland Clinic, Johns Hopkins, Mayo Clinic, etc.). In the end, Cleveland Clinic was able to get us in quickly and was quite a bit closer than any of the other big hospitals, only about a 4 hour drive. I also had an appointment set up with a neurosurgeon locally at Mayfield Clinic. After meeting with both surgeons, they each had the same opinion about how to approach the tumor. First, we'd need to do surgery to resect/decompress the tumor (it is cystic). Because of the location and the fact that it is hitting my optic nerve (and in one surgeons opinion, growing out of the optic nerve) they cannot fully remove the tumor. From there we would get a biopsy which would give us a firm diagnosis on exactly what it is and what possible next steps are. It looks like the procedure is to open a "window" on the right side of my head and lift my brain to be able to get to the tumor. There have been several jokes in this household about the cranial screw top method (if you've ever seen The Man with Two Brains). Cleveland Clinic also ended up performing a spinal tap to see if we could get any hints about what the other lesions on the brain were. Again, that procedure is not nearly as bad as you would think. However, a few days later I started getting migraines whenever I would sit or stand, laying flat on my back made them immediately go away. Two days of laying on my back fixed me right up (it allowed the would to plug which stopped the leaking of spinal fluid which was the cause of the headaches).
Just a note here, in order to understand how the tumor is affecting my vision the way it is I've put together a really crappy drawing based on the description one of the neurosurgeons gave us:
We have the two eyes at the top. The green lines represent nerves (for lack of a better term) that are responsible for different parts of your peripheral vision. The left line on the left eye is actually responsible for the nasal peripheral vision in that eye. The right line coming from the left eye is responsible for the outside part of the peripheral vision in that eye. As they go back and meet the brain, some of those nerves cross. You can see that the tumor is on the right side of my brain and is actually hitting the nerves responsible for the nasal part of my vision in my right eye AND the outside part of the vision in my left eye. So, what they see on the MRI accounts for what is happening to my vision. Hope that helps :)
Spinal Tap Results and MS
The results of the spinal tap suggested that I might also have Multiple Sclerosis. I met with an MS neurologist at Cleveland Clinic and he determined that I have no symptoms of MS but that the brain scans really look like MS lesions. As a result I have been diagnosed with RIS - Radiologically Isolated Syndrome - I.E. you don't have symptoms of MS so we can't say you have MS, all we have are brain scans that look like MS. The whole thing reminds me of an episode of The Simpsons where Lisa digs up a skeleton that appears to have wings. The town automatically assumes it's an angel but Lisa doesn't and she goes on a local talk show to discuss it. Here is a quote from the host of the talk show: "Miss Simpson, how can you
maintain your skepticism
in spite of the fact this thing really,
really looks like an angel?". Always gives me a little chuckle :)
Anyway, that neurologist believes this is very secondary to the primary tumor and we can discuss possible pre-treatments in the future after the big tumor is dealt with. There is still a possibility that the big tumor and the lesions are both caused by the same thing (as opposed to 2 different diagnoses) but all doctors seem to think it's unlikely. So, I guess that's a small piece of good news. For those of you who don't know, there is no test that says you have MS. It is just a series of symptoms along with scans of the brain revealing lesions.
Back to the Tumor
After several meetings with doctors and discussions with my family and Sarah, I finally decided to do the surgery locally at Mayfield Clinic. I really like the neurosurgeon and I think being 10 minutes from the hospital and doctors who perform the initial surgery will be better than being 4 hours away. From what we hear, the surgery will take about 3-4 hours and will require a roughly 3 day hospital stay. From there it's anyone's guess as to how long recovery will take but the number thrown around seems to be about 6 weeks. I have no idea what I will feel like during that time...I hear I'll be very tired, have a hard time concentrating, possibly have headaches, etc. Basically, take it easy and let your brain rest is the recovery plan. I'm going to do my best to keep this blog going after surgery to at least keep everyone updated and have a nice log of my experience. That being said, don't be surprised if it takes me a while to post after surgery which is scheduled for March 2, 2015.
My Reactions
I thought I'd add a little piece about how I've reacted to all of the news as this process has gone along. I think most of you know that I'm a pretty upbeat person, I don't let myself to get too down and I generally try to keep a positive outlook. When I got the news that it was a tumor I can't say that I was surprised, so I think that helped to lighten the load a bit. It definitely hit me like a punch in the gut, but I didn't let my emotions get the best of me. As far as the MS thing goes, it is in the very back of my mind at this point. It could be years before I have symptoms of MS, if I ever have them at all. I don't think it has really hit me yet that I will be going under the knife for relatively complex surgery. I'm sure as the next 8 days go by that I will be more and more nervous. I wonder what my blood pressure will be right before they put me under :) I guess the thing I'm most nervous for is the biopsy results but I'm doing my best not to worry about that until there is something to worry about. Mostly I've been making jokes about the whole situation...it's how I deal with the stress. I've always thought that good attitude goes a long way in recovery so I'm going to put it to the test. I'm sure I'll have my emotional days but I'll be damned if I'm going to let this make me scared and depressed. It ain't gonna happen.
I hope that everyone who reads this blog finds it interesting, maybe a little funny sometimes, and ultimately a way to be kept up-to-date about how I'm doing. I want everyone to know that I'll get through all of this and in a few months/years this will seem like a distant memory.
FYI, I like buttered and salted popcorn, Cinnabons, and chik-fil-a should any of you be looking for healthy snacks to aid in my recovery.
One last bit, I am very excited to use Uncle Eddie's lines from Christmas Vacation if I end up getting a metal plate in my head. "If this gets dented then my hair just ain't gonna look right".
