Sunday, December 27, 2015

Let Down

Well, shit. If you read my last post, you'll know how excited and hopeful I was about the idea of reconstruction surgery and one day being rid of my prosthetic mouth piece. I had that appointment a few weeks ago and it went nothing like I had hoped or anticipated. I walked out of that doctors office totally deflated and on the verge of tears. It was like I had a bunch of big red balloons and the doctor came in with a pin and popped them all.

Bottom line, reconstruction is not an option for me and is not going to happen. I know the phrase "never say never" so I'll say this, I'm 99% sure it is never going to happen. It is way too risky, way too invasive, way too gnarly, and way too much of a bad idea to ever be considered. Technically, can it be done? Yes. But to say the risks far outweigh the benefits would be a huge understatement.

Going into this consultation with a world renown reconstruction surgeon, I had a general idea of what the surgery would consist of. That it was going to be a monster of a surgery and process. Something that may take a few years to be fully rid of a prosthetic and would require multiple surgeries. I knew all of that. But I still thought the choice would be mine. I thought I was going to walk out of the appointment with all kinds of crazy new information that would be terrifying, but just as exciting, and I would have this massive decision to mull over. Nope. No decision. No choice. Just plain ol' not going to happen with a little bit of 'are you freakin' crazy?' sprinkled on top.

This doctor went into great detail, more so than anyone has for me before of what this surgery would really entail. I'm pretty sure my eyes bugged out of my head a few times while he was talking. The doctor told me that 99% of the people who are in the same situation as me stay in their prosthetics forever...and there is a reason for that. I wanted to ask, out of those 99% how many of them are in their early thirties, but as he went on, I realized that point was irrelevant. Here's a quick breakdown of what this reconstruction would really entail: First off, it's a 10 hour surgery (for those that don't know, that is a big deal). It would require 8-10 days in the hospital. Using a bone graft from my leg to rebuild the roof of my mouth and jaw, they would also have to open up my neck (from behind my ear down to about my collarbone) to attach all the muscles and blood vessels to the new bone graft so that everything is generating properly. There is a high probability of needing a tracheotomy due to the swelling of the area closing off my air waves. And finally, going six plus months without any teeth in the missing area that my prosthetic is now providing. And that is just phase 1 of 3 of this process. That's not even the multiple surgeries for implants of teeth and gums. At one point, I legitimately started laughing. This is a MAJOR surgery with what the doctor explained to have "significant risks"...and it would be elective. Not a good idea.

He wasn't just saying this matter of factly, there was an implied tone of 'don't do this, you shouldn't do this, you'd be crazy to do this and I'm certainly not going to be your surgeon.' He wasn't a dick about it, far from it. He was very sincere, very thorough, and very upfront. He was never dismissive or rushing me out of his office, but I did get the feeling the guy was thinking, what the hell are you doing here, do you even know what you're talking about?! Again, technically it can be done, the technology exists, but it would just be freakin crazy to do. The doctor actually said that this is a perfect example of 'if it aint broke, don't fix it.' He said this isn't one of those cases where, sure, I'm doing fine with my prosthetic, but let's see if we can make it better. But rather, I'm doing fine and absolutely don't touch it, don't mess with it, leave it alone.

My mom asked about medical advancements down the line and potential options I may have in the future that wouldn't be so invasive, his response wasn't all that hopeful and included the word "decades" in it. The way this doctor went into detail and really broke it down for me, I have a better understanding of everything that needs to be done to rebuild my mouth. Honestly, at least in my lifetime, I can't see that ever happening without them having to cut my face open. And I don't want that, it's not worth it. I always just assumed, well they took out half of my mouth without having to cut my face open, so they can build it all back without doing that too. Not the case.

The whole thing was just a complete let down. My mom and I walked out of his office kind of speechless, we just kept saying over and over again, "Wow." I keep thinking of that image I had in my head of me and all of those red balloons. Pop. Pop. Pop. As I've said before, the 'forever' part of this was one of the hardest things to deal with and it was just comforting knowing the option was there. Even if I never went through with it, it would be my choice. My choice whether or not I was in this prosthetic the rest of my life. But there is no choice, there is no option, and I just have to let this idea go.

As we were driving home, my music was playing on random shuffle from my iPhone, and Jack Johnson's "All At Once" happened to come on. It was quite fitting for my day and this entire journey in general, the opening lines hit me like a truck...

All at once
The world can overwhelm me
There's almost nothing that you can tell me
That can ease my mind
Which way will you run
When it's always all around you.
And the feeling lost and found you again
The feeling that we have no control

In a way I guess it's a good thing that I found all of this out now, instead of carrying the idea of hope with me for a few more years. No longer will I have the stress of should I do it, will I do it, when should I do it, etc., which has been in the back of my mind for years. Now I know, and I can begin to let this idea go. Time to close this chapter.

*** It's been a few weeks since I originally wrote this and several things have since happened. None of which have any sort of effect on me having reconstruction surgery or not, but has changed my mindset on how I reflect on what happened at the appointment that day. A family friend recently passed away way too young and was dealt obstacles no one in their lifetime should have to go through. It was sad. But he is a true reminder of what it means to be thankful everyday because despite the hardships he faced every single day of his life due to a disease, he was always smiling and he truly lived. His story is humbling, inspiring, and his life was truly a gift to all that knew him. I didn't want this to be some sort of sad pity post. Yes, the information I got that day was a complete let down, but it doesn't change the countless blessings I have in my life and it is not a rain cloud that I need to let hang around. I am grateful for where I'm at, and looking forward to where I'm going. Regardless of whether or not I can remove my mouth. ***

At the end of the day, this is just another reason to Be thankful. Everyday.