Friday, August 29, 2008

Biebrich scarlet

My appointment went well today. I saw the 'big doctor' (Dr. I) and he said that the exposed metal isnt very deep and he thinks that it can be closed using this stuff called Biebrich scarlet, or 'scarlet red.' It is a chemical that is wiped onto the area and it is supposed to promote soft tissue growth, and I will have to have it done a few times. So hopefully the area will close itself up. We still have a few months to try to get it to close, even if just a bit more, as they arent planning on uncovering the implants and putting the teeth in until later in October. They want to get the full amount of healing time. Knowing me, this is a good idea, since we dont want to get ahead of ourselves and then have to go back in again and remove the teeth to do some procedure or another. I am not in a rush to get the teeth, I have been without bottom teeth for 3 years now so its really not a huge thing for me. My chin was the biggest thing cosmetically that bothered me, and now that that is fixed I am happy as a clam to be patient for the rest to get done. :)

They tried the prosthetic denture that will eventually become my implants on again today and its set too far back and is also too low. It needs to be built up a bit more for height, so they are going to have to work on it some more. I dont like how far back it sits, I feel like the edges of my mouth sink in because its so far back. The problem is, the implants are placed near the back, so if they go too far forward with the teeth it becomes weaker...imagine a diving board. If someone is standing farther back, the board is not going to move, but as you move farther and farther to the front it starts to get less stable, that is also the same way with the implants. I think it will come out okay in the end though. It was awfully weird seeing teeth down there when I smiled though!

I met a medical student (I think she was a student) who specializes in ameloblastoma today. The first thing she asked me was "Do you have a blog?" I said yes and she said she thought I looked familiar...she has read my blog and said it is well done. She said it was an interesting read, from the patient's perspective of things. So, hello to you Ms. Medical Student reading out there....sorry, I dont remember your name.


Of course, as usual, I will keep you all posted!

Wednesday, August 27, 2008

An article on ameloblastoma, with pictures

Warning, the pictures in this medical piece are extremely graphic, but are the only pictures I have seen online where it shows what they did to me. The first picture is from the neck being cut open and then basically lifted up while they operate from underneath, then they pull it back down and re-sew it. The second is a picture of the tumor and jawbone that have been removed in one piece, with clean margins (bone untouched by the tumor) on all sides to try to ensure the tumor does not return.

Again, if you are squeamish- best not to read the article. Oh, and it has to be cut and pasted into your browser, for some reason it wont let you click.

Maybe no surgery...but I doubt it

Ok, so I was told at my last appointment that I might not have to have surgery to remove the plate. Somehow I doubt this so I am not getting my hopes up, especially because it seems I can feel more metal and see a bit more all the time. I know part of it isnt my imagination, as I have been actually counting the bumps (the plate looks like a bike chain, and I have counted so far 3 bumps and now 3 1/2 of them showing).

The logic makes sense in them saying that if they dont have to do surgery they dont want to. In essence, they are saying why go in and cut inside your mouth and make a big hole in there given my history of infection, when it looks healthy and pink and nice right now. They are thinking of alternative ways to possibly stimulate my own soft tissue growth in the area without operating. I doubt that this will work out, just simply given the fact that they have tried alternative procedures on me before (BMP at $1500 a pop, anyone?) that didnt work out and ended up resulting in surgery anyway, but I guess we'll see.

It would really suck to have another surgery right now, even a small one. I have been working again and I cant tell you how much more "human" I have been feeling lately. It is exhausting (I work nights and then wake up early to take care of my kids while Chris goes to work) yet it is so nice to get out and mingle with other people for some hours per day and just be out. I still worry about people looking at me (the underside on the left is swollen downwards still, so it does look weird from my profile) but I care a little less each day. I have dealt with being far uglier for so long that little imperfections are seeming so trivial right now. Just to feel like I am getting back into everyday life again has really boosted my morale. My relationship is getting stronger too. I think Chris feels that I am feeling better about being in my own skin again and it makes him happier as well. From the beginning he has been so supportive and wonderful, reminding me I am still beautiful but really when you feel hideous it doesnt matter what people tell you, it is something that has to come from inside of you. Being able to be out every day and act like my life is normal (although ameloblastoma never leaves my mind, and I doubt it ever will, ever) has helped me to overcome alot of the anger, loneliness and sadness I have felt over the past few years dealing with my medical issues.

If I was to tell anyone dealing with this what is the best way to overcome what we have gone through I would say the most you can return to 'normal' life, the least you can hide away and act like you are sick and be reclusive, that is the best way to overcome all of this. Life should go on not only for yourself but for your family, for your children. We may never be the same again inside, the worry and fear will never go away and the procedures take so long- but always try to remember there is a light at the end of the tunnel.

Anyway, I go in Friday again to see the head surgeon, Dr. Indresano. I am pretty worried as to what he will say when he sees more of the metal is showing, but I will keep you updated.

Wednesday, August 13, 2008

Yay for girlfriends!


My friend Emilie was in town for a much needed night of hanging out and chatting. There is nothing quite like getting away from it all with a good friend. Sometimes we forget to be human beings, and allow the medical side to consume us. I am trying more and more to not let that happen. Working has helped too, just getting out 4 or 5 days a week and being around other people helps. I feel so much better these days, even if it is exhausting.

My next appointment is on Monday, I am worried for it, as it has been a few weeks and I always get weird new news when I go. I'll let you know how it goes!

Saturday, August 2, 2008

Reaching out

I have been getting numerous emails lately from people who have found my blog and are thanking me for it, as they themselves are dealing with ameloblastoma and dont know where to look. Most are newly diagnosed and looking for answers, some have friends and family who are recently diagnosed and are questioning what exactly it is, and some have dealt with it themselves in some capacity. My heart goes out to everyone who in some way has been touched by this disease and the treatment that seems never ending. I wish we hadnt had to meet on these terms- and yet I am reminded that there is some kind of comfort in comraderie, as horrible as ours may be. I will always be here to answer questions or concerns for you guys so always feel free to contact me. Part of me thinks that I was made to go through this so I can be here to help other people in dealing with their own. There just isnt a lot of information out there on this at all, so if I can be a small beacon of light to even one other person I feel I have done what this blog is intended to do. And, of course, I hope you all have an easier time of your surgeries than I have! :P