Yeesh. After being such a slacker for a while on this thing, I'm suddenly full of crap to write about and peeps are getting multiple posts a day! Aren't you guys lucky? :-)
Had my pre-op this afternoon, and want to puke up as much info as I can before it all falls out the other side of my head. So yeah, biopsy next Wednesday and then we get to start scheduling the surgery. While he has me under the anesthesia he'll be able to feel around and map out exactly how big this thing is which will then dictate how we proceed in the surgery department. This time the flesh for the flap will be taken from my outer thigh. It will be in the shape of a canoe and it looked like the incision is going to be 5-6 inches long. He said they then just sew the edges back up, no skin grafts from other areas of my body needed this time.
Dr. B (female counterpart of Dr. C) said that this flap is going to be bigger and thicker and deeper than the last one so it's going to take longer for the swelling to go down. This means the trach is going to be in longer. I told her there had better be a huge supply of Ativan on hand if that's the case because I really hate the trach. Not sure how this affects the length of the hospital stay. Will they keep me in the hospital for as long as the trach is in or will they send me home with it? I should probably start a new list of questions for round 2 of this lovely adventure.
Meanwhile, I asked Dr. C about eating and talking with even more of my tongue replaced with 'dead' flesh. He said there's a strong likelihood that I will be eating through a feeding tube implanted in my stomach for the rest of my life. He said when that much of your tongue is removed, you lose the ability to swallow. Okay, whatever. I'm still not really tasting food as it is so after a year of not enjoying eating, I guess I can't cry over that too much. Although I wonder how gross a feeding tube is and what myriad of problems it will bring. ie: Will it be a magnet for infections? Does it get clogged? Is it something I'm going to have to clean every day? Does it hurt?? Oooh....and on the bright side, can I simply dump a couple of shots of tequila in it and get instantly drunk?? Man, I could have some fun with this!
He said speech is usually okay. He said worst case, I could be talking through a trach the rest of my life but he said that speech normally comes back, no problem. So I'm going to try not to worry about that one.
Dr. C said that some people wonder why we can't just radiate the new growth instead of surgically removing it. He said that since the area has already gone through radiation and the new growth happened anyway, surgical removal is necessary. What he didn't seem sure about is whether there is any point in putting me through follow up radiation again after the surgery. He's going to call Dr. A and see what her opinion is about that.
He started talking about splitting my face again. I asked him if that meant the robotic arm guy was off the table. He said no, not necessarily. It's still an option. I kind of get the feeling that he's a little excited about performing this surgery. I told Kunkel that if after the biopsy, Dr. C tells me that he can do a better job at restoring functionality by splitting my face than the robotic arm guy can, then I'm going to go ahead and let him split my face. I'd much rather be able to eat and talk than worry about looking like a monster.
I've had to pause in this blog 3-4 times now to run over to Kunkel's desk and verify if she remembers some of these salient details. She's having a hard time too. They just throw so much info at you! We've decided that from here on out we're going to whip out our iPhones and start recording these appointments so that we can re-listen as necessary. And if the docs don't like that then we're going to start dragging 12 people to these appointments so that we have a ton of ears listening to the info that's given.
Okay, that's all of the appointment that I can remember for now. If anything else comes bubbling to the surface, I'll post about it tomorrow. On top of contacting a lawyer, and getting some life details straightened around, I really need to research a career that will allow me to stay home if my body becomes any messier. Like writing sci-fi/horror novels. I've always wanted to do that.
No comments:
Post a Comment