Monday, November 23, 2015


To reconstruct my mouth, or not to reconstruct, that is the question. I was thrilled to learn that the option was even there. When this tumor, cancer, surgery journey started almost 4 years ago, I was under the impression I would be wearing a prosthetic mouth piece for the rest of my life. Turns out, there are options. Insanely gnarly options, but options nonetheless. It's such a relief mentally to know the option is there though. The "forever" part was one of the hardest things for me to accept with this whole thing, so it's a comfort and relief knowing that isn't the case.

At a recent check up with my dental oncologist (the doc who handles my prosthetic), we started discussing my options and whether or not I really was going to be a "lifer" at his office. I remember my first consultation with this doctor, all of the scans had already been done, the surgery was in place, and he was the guy who would be creating my new prosthetic mouth and everything that went along with it. I'll never forget him saying to me, after going over the mountain of records we sent him, "Unfortunately Amy, it looks like you and I are going to be life long friends." It was comforting and crushing all at the same time.

Turns out, that doesn't have to be the case. We had a lengthy and informative discussion about reconstruction, what it consists of, the different options I have, why I would be a good candidate, and doctors who would be my best option to perform the surgery. It was nice hearing from this doctor, someone who is in the dental prosthetic industry (yes, that does exist), that he would like to see me out of mine one day.

The option that makes the most sense to me, although it is by far the most aggressive, would be to fully rebuild my mouth using bone grafts, then getting dental implants later. There are other options, but all of them require a surgery that still leaves me with a prosthetic in my mouth. None of those options make sense to me, if I'm going to do it, I want this thing out of my mouth, otherwise what's the point, I'm fine where I am.

The full blown reconstruction surgery is pretty effing gnarly though. As I have explained in a previous post, most of my maxilla bone (essentially the roof of my mouth) along with the teeth and adjacent jaw bone, have been removed. So that is what needs to be reconstructed. Basically, they would take part of my fibula in my leg, along with its muscle and use that to fill in the missing bone portion of my mouth. They would attach the bone graft and rewire the muscle so it would be "live" as the doctor put it, so things would be generating and working properly. Skin grafts may also be required and I would have a sizable and visible scar on my leg.

That is phase 1 of the surgery. While that is healing, I would be given a different prosthetic, so I would actually have teeth during this time. This takes about 6 months to heal before we start the process of dental implants. My doctor said that if I were to have reconstruction surgery tomorrow, it would still be about 1-2 years of wearing some type of prosthetic for one reason or another. So that just shows how lengthy and gnarly this process would be. This surgery is not to be taken lightly. It is a doozie and a million factors go into this being successful. We are not simply closing up a hole in my mouth, but also trying to restore all of the normal functions that it should preform.

To be perfectly honest, it scares the shit out of me. Terrifying. But also, so exciting. To be rid of the prosthetic would be so great. Sure, I look fine, you can't tell that I have this gaping hole in my head and am wearing a device that allows me to breathe, swallow, eat, drink, and speak. If anything, it looks like I'm wearing some kind of retainer. But there are a million moments a day that I notice and deal with it, you just can't tell. I'm used to my prosthetic now though, as much as one can get used to something like that. That being said, I'd love to never have to wear the damn thing again.

Here's the other kicker, I think about this often... this is an elective surgery. It's my choice and mine alone. With the surgery to remove the malignant tumor, which was so unbelievably awful I can't even put into words, I had no choice in had to be done. This time, it's my call. When exactly is the best time or right time to put my life on hold for a year or so to have this done? Am I getting greedy here? I mean, the cancer is gone, I can talk, eat, drink... I really don't technically have any limitations with my prosthetic in the grand scheme of things. Do I just leave it alone and continue to deal with it? I asked my doctor these exact questions and his response was, "Well you're wearing glasses and have for most of your life, but if there was a surgery out there that would fix your eye problem and rid you of glasses, would you do it?" Of course.

At the very least, its in my best interest to schedule some consultations and see what these doctors have to say. I may be a great candidate for this surgery, but at the end of the day, I don't have to do anything. As of right now, and my opinion on this changes often, but as of right now, my stance is I want to do it, it's just going to come down to whether or not I have the cojones to go through with it.

One thing is for sure, this particular doctors office can be pretty heavy. Dental oncology and prosthetic dentistry. The things you hear and the people you see... no tongues, zero taste buds left... talk about a reality check. Being there rattles me to my core every time, but I walk out of there skipping thinking, fuck I am so lucky!!

Be thankful. Everyday. Don't ever forget it.