Tuesday, December 30, 2008

I want my date...

I want my surgery date now! Not too demanding am I? I really hate to say this but I am so use to this its not even funny. I mean it will be my 4th surgery. I called the Doctors secretary to make the appointment but she did say she would have to call me back. I just want to know what my schedule would be for the next two month. Not that I am planning a lot. I did decide to go over to see my brother this week rather then wait till February. I know we will hit Disneyland again and perhaps some museums. It should be fun.

I am still swelling a little in which I drain myself by pushing on it. Stuff still comes out. I just hope I am not making it worse. I think when the plate comes out I will frame it or turn it into jewelry. I AM serious! LOL

Hope 2009 will be better then 2008.

Happy New Year

Wednesday, December 24, 2008

I knew it, another surgery

I went to see my doctor at Johns Hopkins yesterday. I told him what happened; the swelling I started to get and the evil stuff coming out inside my month. Before I could give any more information he ask me if I was done. By done, he meant its time to take the plate out. I said YES.

I made sure he was aware that I wanted to stay in the hospital at least two days for observation. Based on my past history of getting an infection I thought this would be a wise move and he agreed. The only bad part is I would have to wait till next week to get a date for the surgery as his secretary was out on vacation. Lucky her.

My fear is after this is all said and done it will not work. Meaning my issues with swelling will continue. I pray that I am worrying for nothing and all the stars, planets and moons in the universe will align and I will be fine (over dramatic I know). But my ultimate fear is that my stupid Ameloblastoma will come back. I know there is always a chance. I hope that the doctor got everything out during the first surgery. But it only takes one cell left behind. Just one for the tumor to develop again.

Thursday, December 18, 2008

Happy Anniversary

Saturday, December 20th will be my 1 year anniversary since I had my surgery for removal of my tumor and my reconstruction of my right mandible. I remember this time last year I was saying goodbye to my fellow co-workers. I was packing my suite case for my overnight stay at a Baltimore hotel. I was thinking about what I was going to have as my "last meal" before the surgery. I never thought I would still being dealing with issues one year later.

My chin is slightly swollen again. Nothing compared to what it was a month ago. But the bad part is I have leakage inside my mouth. Two in fact. If I put pressure under my chin I can see the "evil stuff" come out. Not massive mind you but its apparent that its leaking under pressure. I do have plans to see the doctor on Tuesday. So I am sure he will be glad to know. I will update the blog when I come back.

I am so sick of this. If the plate has to come out, lets take it out now. Lets do whatever we have to do so I can move on. I don't want to worry any more about this. It seems every time I start feeling better about myself something happens. I know I am so lucky in the cosmic sense but enough is enough.

I think when I do get the plate out I will frame it. Put it on my wall to remind me what I have been through. Hope the surgery will not interfere with my trip to California in February.

Wednesday, December 17, 2008

I feel creative

For the past few days I have been feeling a little creative. I want to do something to help others or help myself even regarding Ameloblastoma. I get so frustrated that there is nothing and I mean nothing about it anywhere on the internet other then the wonder support group that I had found on Yahoo. I even checked out NORD (Nation Organization of Rare Disease) to see what they have on this issue. Not much. I got the print out from the site that goes over what they have on it. It’s nothing that I have not found on other sites like Web MD. Even the American Cancer Society lists nothing on it. I know it’s rare for this disease to be cancer but NORD lists that as a link for information on Ameloblastoma.

I would love to start a foundation or try to put together a symposium of some sort. However, I have no idea how to start one. Plus I do not have the time or money right now. But it will be on my mind for awhile. So to appease the part of me that wants to do something I have decided to create a video. Not a 10 minute piece but 2-3 minutes of factual information of what one can go thru with this disease. I am not sure how to go about it and it will sure take some time. I will most likely be a very basic video with slides and photos set to some sort of music. But I will figure it out. Guess this will be my little holiday project.

Any one has any suggestions…

Wednesday, December 10, 2008

And now... we wait.

Not much to report. My swelling is down considerably. I don't wear my prosthetic too much as they aggravate me a little. But I guess I am really waiting for the implant screws to heal. Perhaps they will work better after that.

I also am waiting for my face to swell again. I know I should be positive but my history would say otherwise. Guess time will tell. I have a follow up appointment at the end of the month with Dr B. I am sure he will give me some insight as to what will happen.