Things are continuing to go well. I went in this morning for the dentist to adjust my denture, it had one spot that pinched when I opened my mouth wide but its 100% comfy now. I am so happy! The metal that was exposed already looks like it is starting to fill in more. That screw that was showing is mysteriously gone and covered now (already, even the doctor was surprised!). I really do think it was that bulky thing I was wearing in my mouth before, it would make my mouth sore and it was so hard to talk with it in, I think it was rubbing away the skin graft from having it in so long, but I had to wear it to keep my lip from falling back in. After that vestibuloplasty I wasnt taking any chances of having it go right back in the way it was before, so it was kind of a lose lose situation there. My doctor seemed very happy to see it is filling in after only a few days of wearing the new denture. So they are going to call me to schedule my appointment to have the teeth attached to the implants, it is an outpatient surgery done there in the clinic so I get to go home right after, there will be some swelling but nothing like before (I dont think, though I am a sweller).
I am just so excited to get so far, after everything I have been through. I am trying to stay positive. I do still have to have a couple of smaller procedures, really just cosmetic stuff, done in the future but right now I am staying focused on getting the teeth permanently attached! There are so many things I am looking forward to being able to eat again, I swear I'll probably gain 100 pounds in the months after this surgery.
Monday, September 29, 2008
Friday, September 26, 2008
Got teeth?
I did, some new bottom ones. :) Right now it's just a temporary denture but they will actually be attached to my implants later on. I think we are aiming for in a couple more months, it feels like they keep telling me 'a couple more months' but I am pretty sure they mean it this time!
I like it. Cosmetically, there are a few things that bug me but I am going to have to get used to it. First, my chin juts out in my profile. BUT it looks ok from the front so I can ignore that. Second, on either side of my mouth its a bit sunken in (because the chin comes out so far). There's not much they can do about that now. Also, its almost impossible to smile, and when I do- the bottom teeth dont show! Argh, after all this time waiting for teeth and they dont even show when I smile! I hate that because the only way I can smile now is with my mouth partially or all the way closed. That is because I lost SO much soft tissue and gum on the bottom that they can only build it up so far, so it is lower than where my normal teeth would come up to (if that makes any sense). It also makes it a little difficult to close my mouth all the way naturally. I am going to mention that to the doctor on Monday when I see him again. He wanted me to wear it for a bit before they made any adjustments to it. I am sad that I have lost my old smile, but will have to get used to this new one.
Pics!
Teeth- excuse the pimple on my chin, I swear I am almost 30!
One Chris took of me smiling, he thinks I look beautiful:
And the closest I can get to a smile where my teeth are showing:
Talk to you all soon!
I like it. Cosmetically, there are a few things that bug me but I am going to have to get used to it. First, my chin juts out in my profile. BUT it looks ok from the front so I can ignore that. Second, on either side of my mouth its a bit sunken in (because the chin comes out so far). There's not much they can do about that now. Also, its almost impossible to smile, and when I do- the bottom teeth dont show! Argh, after all this time waiting for teeth and they dont even show when I smile! I hate that because the only way I can smile now is with my mouth partially or all the way closed. That is because I lost SO much soft tissue and gum on the bottom that they can only build it up so far, so it is lower than where my normal teeth would come up to (if that makes any sense). It also makes it a little difficult to close my mouth all the way naturally. I am going to mention that to the doctor on Monday when I see him again. He wanted me to wear it for a bit before they made any adjustments to it. I am sad that I have lost my old smile, but will have to get used to this new one.
Pics!
Teeth- excuse the pimple on my chin, I swear I am almost 30!
One Chris took of me smiling, he thinks I look beautiful:
And the closest I can get to a smile where my teeth are showing:
Talk to you all soon!
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.
*waves.*
Of course, as usual, I will keep you all posted!
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.
*waves.*
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.
http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ija/vol17n1/graft.xml
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.
http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ija/vol17n1/graft.xml
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.
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
Sunday, July 27, 2008
Slacking, worrying and new jobs- oh my!
Sorry I have not updated, I just havent really been in the mood. Sometimes my blog gets me down because its all about my ameloblastoma, but sometimes I need it, so here I am again. Things have just been crazy this past week, first finding out I have to have yet another surgery, then the worry there wasnt enough bone to finish the surgeries, and then finding out there was, then the anxiety over getting a job, and then getting that job...told you its been insane.
Basically I am looking at another surgery here because part of my plate has to be removed. This sounds like it is fairly common, though I was not expecting to have another surgery like this again, thinking I was nearly done. The part in my mouth that is exposed is not getting any smaller, in fact it has gotten a bit more exposed even, and the doctors are saying it has to be cut out because as long as it is exposed I am at risk for infection. They havent decided whether they need to remove all of the plate or just that small part yet.
Basically the plate is only put in for stability when they cut the tumor and jaw bone out, and some doctors (from what I understand) remove it anyway after the patient has formed a new stable base of bone under it. It will be done intra orally so no neck cutting (thank god, I cant handle that again, just cant do it) and should be out patient surgery. My biggest issues are always with swelling, so I am scared and not looking forward to it of course.
My biggest concern now of course is my new job I just got- yesterday! We are hurting a bit financially, I have basically put my life on hold for 3 years now to deal with all of this and we just cant do it anymore. With as much as gas and food have been lately we are no longer able to get by the way we were on just one income living in Northern California, its just not happening. So I got a small night/weekend job at Barnes and Noble, a local cafe and bookstore, to supplement our income and help out with expenses. Its one of my favorite stores, and I have almost 6 years of experience working in a coffee shop from when I was in college so I think they are going to start me off in the cafe which will be nice. I can get out of the house a few hours a week and be around other adults which should be therapeutic and also bring in some income. SO no more saying I need surgery tomorrow, and giving me no time in advance! I am going to have to let them know I will need 2 weeks now to prepare for any procedure, because I need this job and do not want to lose it.
Having this new job is really important to me not just for the money but for me in a way its starting to live my life again. These past years in dealing with this thing have just been that- dealing with doctor appointments and surgeries and healing and all of that makes you forget you are actually human for a while and you feel like a walking medical anomaly. It is very draining. I am excited about what is to come, I just hope that things stay on the upswing for a while now because for a while there I was very worried about everything.
As usual, I'll keep you all updated (or try to be better about it, at any rate).
Basically I am looking at another surgery here because part of my plate has to be removed. This sounds like it is fairly common, though I was not expecting to have another surgery like this again, thinking I was nearly done. The part in my mouth that is exposed is not getting any smaller, in fact it has gotten a bit more exposed even, and the doctors are saying it has to be cut out because as long as it is exposed I am at risk for infection. They havent decided whether they need to remove all of the plate or just that small part yet.
Basically the plate is only put in for stability when they cut the tumor and jaw bone out, and some doctors (from what I understand) remove it anyway after the patient has formed a new stable base of bone under it. It will be done intra orally so no neck cutting (thank god, I cant handle that again, just cant do it) and should be out patient surgery. My biggest issues are always with swelling, so I am scared and not looking forward to it of course.
My biggest concern now of course is my new job I just got- yesterday! We are hurting a bit financially, I have basically put my life on hold for 3 years now to deal with all of this and we just cant do it anymore. With as much as gas and food have been lately we are no longer able to get by the way we were on just one income living in Northern California, its just not happening. So I got a small night/weekend job at Barnes and Noble, a local cafe and bookstore, to supplement our income and help out with expenses. Its one of my favorite stores, and I have almost 6 years of experience working in a coffee shop from when I was in college so I think they are going to start me off in the cafe which will be nice. I can get out of the house a few hours a week and be around other adults which should be therapeutic and also bring in some income. SO no more saying I need surgery tomorrow, and giving me no time in advance! I am going to have to let them know I will need 2 weeks now to prepare for any procedure, because I need this job and do not want to lose it.
Having this new job is really important to me not just for the money but for me in a way its starting to live my life again. These past years in dealing with this thing have just been that- dealing with doctor appointments and surgeries and healing and all of that makes you forget you are actually human for a while and you feel like a walking medical anomaly. It is very draining. I am excited about what is to come, I just hope that things stay on the upswing for a while now because for a while there I was very worried about everything.
As usual, I'll keep you all updated (or try to be better about it, at any rate).
Thursday, July 17, 2008
Depressed
I have been dealing with some depression lately. Its odd because it strikes me at such weird times, never around the times that I am going through the hardest things, but rather it sneaks up on me when I seem to be doing well and just kind of takes over. I know a lot of it is our financial issues, and us needing to be in a better place in terms of the money that is coming in. Dont get me wrong, we are doing fairly well for living in Northern CA on one income, even if we are paycheck to paycheck, but if I had never had this tumor we'd be a dual income family for sure. First of all, I am not meant to be a stay at home mom. I just feel like I am meant to be out working, using my brain more than I do here at home all day long, and just being around other people more. I find myself bored alot, and feel understimulated all day long, as well as short tempered and just all around tired of being home all day long. I have been looking for a part time job but my hours of availability are far from great since we cant afford daycare for 2 kids and no one has called me back yet.
I also have the worry of if I do get a job when will my next surgery be...I am scared I will get a job and start working and then BAM! have to have another surgery which will have me resting for a few weeks again and I could possibly lose my job. It seems that from here on out I am only going to be faced with outpatient surgeries but who knows what will happen between now and then. "We're almost done"- I have heard that before. The one thing I have learned out of all of this is that with ameloblastoma, nothing is predictable or guaranteed. I have always been the kind of person who likes guarantees and to be able to see what is going to happen next. Its just a part of my personality and being super organized, and that just hasnt been a thing I have been able to do these past few years. There are times I feel just so out of control with it all.
We are also dealing with a lot in terms of Ashley (my oldest) and trying to figure out what is going on with her behaviorally and mentally/emotionally besides the ADHD diagnosis. She hasnt been sleeping well for a few weeks now due to her medication, and the lack of sleep is definitely taking its toll on me as well. These darn hives are still sticking around too, I am starting to think its related to her not sleeping and the added stress I have on me now worrying about her at night too. So I am still taking the Benadryl which makes me feel woozy and tired all day, and that is contributing to the depression. Its just a lot all at once I think, and I am sleeping far more than I should and snapping at the people I love far more than I normally do :(.
Anyway, I just keep hoping it will lift. I have never been able to stick to a pill when it comes to my depression, it seems to come and go anyway and is never around 24/7 so its not like it is anything I will be going to see my doctor for. Maybe I will get some good news on Monday at my next appointment. They should have my lower denture ready, I hope it fits nicely and is more comfortable than the thing I have been wearing lately.
I also have the worry of if I do get a job when will my next surgery be...I am scared I will get a job and start working and then BAM! have to have another surgery which will have me resting for a few weeks again and I could possibly lose my job. It seems that from here on out I am only going to be faced with outpatient surgeries but who knows what will happen between now and then. "We're almost done"- I have heard that before. The one thing I have learned out of all of this is that with ameloblastoma, nothing is predictable or guaranteed. I have always been the kind of person who likes guarantees and to be able to see what is going to happen next. Its just a part of my personality and being super organized, and that just hasnt been a thing I have been able to do these past few years. There are times I feel just so out of control with it all.
We are also dealing with a lot in terms of Ashley (my oldest) and trying to figure out what is going on with her behaviorally and mentally/emotionally besides the ADHD diagnosis. She hasnt been sleeping well for a few weeks now due to her medication, and the lack of sleep is definitely taking its toll on me as well. These darn hives are still sticking around too, I am starting to think its related to her not sleeping and the added stress I have on me now worrying about her at night too. So I am still taking the Benadryl which makes me feel woozy and tired all day, and that is contributing to the depression. Its just a lot all at once I think, and I am sleeping far more than I should and snapping at the people I love far more than I normally do :(.
Anyway, I just keep hoping it will lift. I have never been able to stick to a pill when it comes to my depression, it seems to come and go anyway and is never around 24/7 so its not like it is anything I will be going to see my doctor for. Maybe I will get some good news on Monday at my next appointment. They should have my lower denture ready, I hope it fits nicely and is more comfortable than the thing I have been wearing lately.
Monday, July 14, 2008
Waiting and waiting...and itching
Well, I havent seen my doctors for a while and they dont need to see me again until the 21st, so I have gotten a little bit of a break which is nice. They are in the process of making me a denture that has teeth on it for me to wear while we are waiting, as the implants still need a bit more time, and we are also hoping that the exposed area in my mouth will cover itself up a bit more. To be honest it looks the exact same to me all the time, though last time I saw the doctor he said it looked a little smaller and seemed satisfied. I dunno what they are seeing that I am not so I just dont look in there except to make sure that I have rinsed everything out of my mouth after a meal.
A new development I have had lately that I do not think is even related to all of this is a bad case of hives that have cropped up, and have been here since Wednesday night. I am so itchy and horribly miserable. I have been taking Benadryl around the clock, as if I go longer than 5 hours without taking another dose they crop back up again. They are awful when they come and just take over my whole body in patches, with a series of raised bumps that all just mesh together to form one big sucky patch of itchy crappiness. *Sigh. I am eagerly awaiting their departure. I am not under any more stress than I have ever been in, in fact things are fine lately, and believe me I know stress and have been under huge amounts of it before, and in the past it has been the only reason why I have ever had hives, and never longer than 24 hours either.
Anyway, I will update you all of course when I know more.
A new development I have had lately that I do not think is even related to all of this is a bad case of hives that have cropped up, and have been here since Wednesday night. I am so itchy and horribly miserable. I have been taking Benadryl around the clock, as if I go longer than 5 hours without taking another dose they crop back up again. They are awful when they come and just take over my whole body in patches, with a series of raised bumps that all just mesh together to form one big sucky patch of itchy crappiness. *Sigh. I am eagerly awaiting their departure. I am not under any more stress than I have ever been in, in fact things are fine lately, and believe me I know stress and have been under huge amounts of it before, and in the past it has been the only reason why I have ever had hives, and never longer than 24 hours either.
Anyway, I will update you all of course when I know more.
Wednesday, June 25, 2008
I am SO sorry!
I realized I havent update you all as I promised I would! How awful of me. Anyway, my last appointment went well. I saw Dr. Indresano this time, and he says he feels that the area will cover itself back up again. Worst case scenario is I may get an infection (with it being exposed there is always the possibility) and have to have a small piece of the plate removed, but that of course is worst case...other options are to put a small bit of skin over it, so it would be a much smaller skin graft than last time was, or even, he says, to leave it be- some people live with metal in their mouths exposed all the time, so we will see. Of course with me being so susceptible to infection I would feel better if it was covered up but I will leave the decision up to them.
I go back in next week for them to take an impression, as he wants them to make me a denture that actually has teeth on it that fits down there to wear for now until the implants are 100% ready to go. This bumper I wear is really uncomfortable and I dont wear it as often as I should, and he is concerned about my lip falling inwards again. So, that is it for now.
Oh and in other news, Chris and I have started plans to get married this winter, most likely in December when my surgeries are (hopefully) almost over, just in case anything happens with my insurance. I hope nothing major happens between now and then, we have been engaged for 3 years now (since right before the doctors found my tumor) and have been putting things off repeatedly due to always needing a new surgery or some other medical mishap that happened to me. We are really going to do it this time, and I am so excited!
I'll try to be better about updating.
I go back in next week for them to take an impression, as he wants them to make me a denture that actually has teeth on it that fits down there to wear for now until the implants are 100% ready to go. This bumper I wear is really uncomfortable and I dont wear it as often as I should, and he is concerned about my lip falling inwards again. So, that is it for now.
Oh and in other news, Chris and I have started plans to get married this winter, most likely in December when my surgeries are (hopefully) almost over, just in case anything happens with my insurance. I hope nothing major happens between now and then, we have been engaged for 3 years now (since right before the doctors found my tumor) and have been putting things off repeatedly due to always needing a new surgery or some other medical mishap that happened to me. We are really going to do it this time, and I am so excited!
I'll try to be better about updating.
Tuesday, June 17, 2008
Doctor appointment tomorrow
I know I havent updated in a while, things have been crazy with my birth board on my online community and I have been dealing with that craziness as well as being worried about my medical issues, so it's been a bit of an overload.
Anyway I have my doctor tomorrow at 10 am my time, I will find out just how bad everything is and we will decide where we are going to go from here. Please send good thoughts my way. I can handle another skin graft if I have to, as I know it would be smaller than this last one was but ultimately would of course like to not have anymore of these big surgeries in front of me! I am anxious and worried but trying to remain optimistic.
I'll update tomorrow...
Anyway I have my doctor tomorrow at 10 am my time, I will find out just how bad everything is and we will decide where we are going to go from here. Please send good thoughts my way. I can handle another skin graft if I have to, as I know it would be smaller than this last one was but ultimately would of course like to not have anymore of these big surgeries in front of me! I am anxious and worried but trying to remain optimistic.
I'll update tomorrow...
Thursday, June 12, 2008
Blah :(
I couldnt sleep last night.
It's my own fault. The way I deal with some things is to just not think about them or look at them. Well, what I should have done is look at what the doctor was talking about yesterday and I just didnt do it, so I am not *quite* sure what he is talking about. So I tried to look in there last night. Well, I can see a LOT of metal down there and I dont know if its the implants or if its supposed to look like that or what but it wasnt just 2 cm- it was a LOT of metal showing...is it more of the plate exposing itself already or what?
I am so freaked out and just feel sick all the time. I cant eat, and I am just always feeling like I want to throw up. I feel another surgery looming here...another skin graft at best to cover it back up again or...worse if I get an infection in there.
Please send good thoughts my way. I have come so far, and I just feel like I cant go on more if anything else bad happens.
It's my own fault. The way I deal with some things is to just not think about them or look at them. Well, what I should have done is look at what the doctor was talking about yesterday and I just didnt do it, so I am not *quite* sure what he is talking about. So I tried to look in there last night. Well, I can see a LOT of metal down there and I dont know if its the implants or if its supposed to look like that or what but it wasnt just 2 cm- it was a LOT of metal showing...is it more of the plate exposing itself already or what?
I am so freaked out and just feel sick all the time. I cant eat, and I am just always feeling like I want to throw up. I feel another surgery looming here...another skin graft at best to cover it back up again or...worse if I get an infection in there.
Please send good thoughts my way. I have come so far, and I just feel like I cant go on more if anything else bad happens.
Wednesday, June 11, 2008
First bad news in a while...
and I am not sure how to handle it really.
Today the doctors saw 2 cm of exposed area in the front of my mouth where the plate is as well as an area on the left that is thinning out and getting ready to become exposed. This is pretty bad because that means there is an opening down into all that nice fresh bone in there- what my body has been working on since September pretty much, and it is highly susceptible to infection. So the doctor put me back on antibiotics in the hopes of warding off infection, lots of oral rinses with salt water, no food down there, etc. The best outcome is that it will granulate back in and cover itself back up again- but the worst is just so bad that I dont even want to think about it.
But I cant help thinking about it.
This sucks. I am so tired of all of this. I want to give up but I cant and that sucks even more.
Today the doctors saw 2 cm of exposed area in the front of my mouth where the plate is as well as an area on the left that is thinning out and getting ready to become exposed. This is pretty bad because that means there is an opening down into all that nice fresh bone in there- what my body has been working on since September pretty much, and it is highly susceptible to infection. So the doctor put me back on antibiotics in the hopes of warding off infection, lots of oral rinses with salt water, no food down there, etc. The best outcome is that it will granulate back in and cover itself back up again- but the worst is just so bad that I dont even want to think about it.
But I cant help thinking about it.
This sucks. I am so tired of all of this. I want to give up but I cant and that sucks even more.
Thursday, May 29, 2008
The good, the bad and the ugly
Some pictures.
My hip scars fading from the last bone graft:
My skin graft site on my leg (excuse the long sleeved shirt/shorts combo- I have to wear shorts or it hurts my leg but I am cold today LOL):
What a skin graft that is healing looks like (all the white stuff is skin that has taken). Such a small area for the large amount of skin that has to be taken. :(
Me trying to smile- still hard:
My hip scars fading from the last bone graft:
My skin graft site on my leg (excuse the long sleeved shirt/shorts combo- I have to wear shorts or it hurts my leg but I am cold today LOL):
What a skin graft that is healing looks like (all the white stuff is skin that has taken). Such a small area for the large amount of skin that has to be taken. :(
Me trying to smile- still hard:
Learning to be happy with what you have
Last night I slept like a total ROCK. It was the first night in 6 weeks that I have been able to sleep however I want and get no pain. I am a tummy sleeper and I tend to bury my face in my pillow so it was nice to be able to do that without waking up every 30 minutes with some sharp wires digging into the insides of my cheeks or lip. I fell asleep about 10 watching Top Chef, then woke up at midnight when my alarm went off to take my antibiotic, then went right back to sleep and slept until 6 am when my alarm went off again to take my antibiotic, and then slept until 7 when it was time to wake my daughter up for school. I felt so wonderful when I got up today! The lack of sleep has been adding to my stress level these days, and I honestly think that is part of the reason why my face is breaking out and I have been having mood swings, because I am just so exhausted all the time. I really needed that!
Anyway, I did notice something today that has set me on edge a bit. As my chin heals and shrinks up, the area underneath my chin (between my jawline and my neck) is still swollen outwards like a bullfrog almost. The doctor said it is because of all the damaged and inflamed tissue and muscle inside from having had my neck cut so many times for surgeries. But before when my chin was first done and it looked awesome, it was still "big" enough to cover up that area. Now that it shrinks up if I lift my head up even a little I look like I have a double chin from the swelling underneath my neck. It is not attractive. I always have to have something to worry about lately and I just hate that. There is never really any sense of calm.
This made me start thinking about how as humans we are just never really happy. We always say "if I just had ___ I would be so much happier." It could be anything really...if I just had more money, if I could just lose this amount of weight, if I could just have the boobs/lips/eyes of Angelina Jolie, etc etc. This is what fuels part of the obsession with plastic surgery for (especially) women in our society to always be wanting to look better and better. I think it is just in our nature to always be wanting wanting more- but when you get it, believe me, you always find other things that you "just need" to be totally happy. Sometimes those things seem so unattainable to you, so you think that they are the key to your happiness because you just know you will never have it so you think of it all the time. Well, that is how it is with my face I guess. I swore for the last 2 1/2 years "if I could just get my chin fixed, I would be completely happy- screw the teeth, I dont care about how my neck scar looks, etc." Then what happens...things go well and the doctors fix my chin and from the front yes I do look 'normal' now, even somewhat attractive again...you would think that would be enough for me, as I swore to myself just this time last year if I could just have this I wouldnt ask for anything else. But no, now I am looking at all the other imperfections and how I just need that fixed (just today I said to myself "I am going to have to talk to the doctor about this next time I see him").
I cant help but wonder how much of this is just human nature to always want more or how much of this is pure selfishness and conceit. A lot of people who have dealt with what I had have come out far worse on the other side of it. Horrid nerve damage that causes constant pain, lopsided faces from bad healing, eye sockets gone or roofs of mouths gone. In other countries where they cannot get medical help they live until the tumor goes up into their brain and slowly kills them- but not before it leaves them horribly disfigured and alienatedby society first, like this poor man:
Some people even die from having the malignant variety. The truth is, this is just such a rare thing that not a lot of doctors even know how to handle it, a lot of people cannot afford to go to the "top doctors" who know about it, so they end up on the receiving end of someone who has maybe only done one other surgery like this in their life (if at all) and the patient becomes like some kind of medical "tester" in a way. I have been blessed to have Drs. Indresano and Mobati who not only have done hundreds of these cases, but are in the next town over, AND take my chintzy crappy insurance to boot. And here I am wanting more and more.
I want to get to a place where I can just be happy with myself inside and be satisified. This is something that I have been thinking about these past few days. I wonder if I will ever get to that point in my life where I can say enough is enough, Tina, and just be satisfied that I have overcome this medical condition, am not so hideous that people stare, and have a family that loves me the way I am. I think I need to better learn to love me the way I am.
Meh...I'm working on it. ;)
Anyway, I did notice something today that has set me on edge a bit. As my chin heals and shrinks up, the area underneath my chin (between my jawline and my neck) is still swollen outwards like a bullfrog almost. The doctor said it is because of all the damaged and inflamed tissue and muscle inside from having had my neck cut so many times for surgeries. But before when my chin was first done and it looked awesome, it was still "big" enough to cover up that area. Now that it shrinks up if I lift my head up even a little I look like I have a double chin from the swelling underneath my neck. It is not attractive. I always have to have something to worry about lately and I just hate that. There is never really any sense of calm.
This made me start thinking about how as humans we are just never really happy. We always say "if I just had ___ I would be so much happier." It could be anything really...if I just had more money, if I could just lose this amount of weight, if I could just have the boobs/lips/eyes of Angelina Jolie, etc etc. This is what fuels part of the obsession with plastic surgery for (especially) women in our society to always be wanting to look better and better. I think it is just in our nature to always be wanting wanting more- but when you get it, believe me, you always find other things that you "just need" to be totally happy. Sometimes those things seem so unattainable to you, so you think that they are the key to your happiness because you just know you will never have it so you think of it all the time. Well, that is how it is with my face I guess. I swore for the last 2 1/2 years "if I could just get my chin fixed, I would be completely happy- screw the teeth, I dont care about how my neck scar looks, etc." Then what happens...things go well and the doctors fix my chin and from the front yes I do look 'normal' now, even somewhat attractive again...you would think that would be enough for me, as I swore to myself just this time last year if I could just have this I wouldnt ask for anything else. But no, now I am looking at all the other imperfections and how I just need that fixed (just today I said to myself "I am going to have to talk to the doctor about this next time I see him").
I cant help but wonder how much of this is just human nature to always want more or how much of this is pure selfishness and conceit. A lot of people who have dealt with what I had have come out far worse on the other side of it. Horrid nerve damage that causes constant pain, lopsided faces from bad healing, eye sockets gone or roofs of mouths gone. In other countries where they cannot get medical help they live until the tumor goes up into their brain and slowly kills them- but not before it leaves them horribly disfigured and alienatedby society first, like this poor man:
Some people even die from having the malignant variety. The truth is, this is just such a rare thing that not a lot of doctors even know how to handle it, a lot of people cannot afford to go to the "top doctors" who know about it, so they end up on the receiving end of someone who has maybe only done one other surgery like this in their life (if at all) and the patient becomes like some kind of medical "tester" in a way. I have been blessed to have Drs. Indresano and Mobati who not only have done hundreds of these cases, but are in the next town over, AND take my chintzy crappy insurance to boot. And here I am wanting more and more.
I want to get to a place where I can just be happy with myself inside and be satisified. This is something that I have been thinking about these past few days. I wonder if I will ever get to that point in my life where I can say enough is enough, Tina, and just be satisfied that I have overcome this medical condition, am not so hideous that people stare, and have a family that loves me the way I am. I think I need to better learn to love me the way I am.
Meh...I'm working on it. ;)
Wednesday, May 28, 2008
Great news!!!
I am copying and pasting this update I posted on my ameloblastoma board.
I got such wonderful news today. My implants are almost already
healed. The doctor wants to wait 4-6 more weeks before they put the
teeth in but I am just so happy this is finally happening!!!
The surgery where they released my lip worked well...it has gone back
in a teeny tiny bit, there is just a shadow of an indentation but
truth is it will never be fully flat and cosmetically 'perfect' again
but it at least looks normal now. They stretched it out for 6 weeks.
I had the wires and hardware taken out today without any pain
medication and let me tell you- that was horribly unfun, I cried like
a little wussy when they pulled them out of my jaw. But now no more
poking into my soft tissue and I will hopefully be able to sleep at
night again. I am back on antibiotics because of the holes from the
wires, just as a precaution but hopefully after that all will be well.
I am not able to wear a denture or anything yet as the skin graft
inside needs more healing time but they did put the bumper back in, it
is a soft thing that holds the lower lip out so it isnt caved inwards, but
it is purely cosmetic and only to be used when I am out and about- at
home I am to look like a tiny old lady and leave it out lol.
Just wanted to update everyone on my happiness!!
I got such wonderful news today. My implants are almost already
healed. The doctor wants to wait 4-6 more weeks before they put the
teeth in but I am just so happy this is finally happening!!!
The surgery where they released my lip worked well...it has gone back
in a teeny tiny bit, there is just a shadow of an indentation but
truth is it will never be fully flat and cosmetically 'perfect' again
but it at least looks normal now. They stretched it out for 6 weeks.
I had the wires and hardware taken out today without any pain
medication and let me tell you- that was horribly unfun, I cried like
a little wussy when they pulled them out of my jaw. But now no more
poking into my soft tissue and I will hopefully be able to sleep at
night again. I am back on antibiotics because of the holes from the
wires, just as a precaution but hopefully after that all will be well.
I am not able to wear a denture or anything yet as the skin graft
inside needs more healing time but they did put the bumper back in, it
is a soft thing that holds the lower lip out so it isnt caved inwards, but
it is purely cosmetic and only to be used when I am out and about- at
home I am to look like a tiny old lady and leave it out lol.
Just wanted to update everyone on my happiness!!
Friday, May 9, 2008
Ch-ch-ch-ch-ch-ch-CHANGES
So lately I have noticed some changes in my 2 year old and am wondering if its all related to what has been going on lately with my surgeries. For one, he always calls for daddy now...I am sure this change occurred back when I first got home and for the first 4 days just did not have much to do with him at all being in a pain reliver induced coma half the time and just generally not wanting to be touched by two year old fingers that often cause destruction unknowingly. You parents out there, I am sure you know what I mean. Its sad because it used to be that he would call for me when he needed help or something without fail. Now its like he doesnt want da-da out of his sight. Score one for dad but a big loss for mommy :(. It seems this child has forgotten who gave birth to him but its ok, I'll remember that the next time he wants a cookie.
Another change is that he is so much more sensitive to my reprimands. He has always been sensitive but now when I get frustrated (which is often, as I get tired easily for the month or so after a surgery and it takes me a while to bounce back) and use a sharp tone with him he just gives me this look like a whipped puppy and backs away. Its hard to even discipline him as it melts my heart every time he looks at me like that!
My 8 year old is often a mystery anyway but I have noticed a small change with her as well, though for the better. I didnt realize how much all of this has affected her, although I knew it was obviously because there was so much going on, but she doesnt often voice how she is feeling. She has been noticing me out and about more lately, we have been pretty social, had some friends over last weekend for a BBQ, then I had her girlfriend and her mom over for dinner last night (which was fun) and just generally been getting out more. So she has been asking me if now I will go to events at school with her, I used to send Chris because I was so uncomfortable with going, you know how kids stare but mostly because I just didnt want anyone to tease her about my face the way it looked before. One time I was at her school to get her and some kid walked up to her and said "That's your mom? What's wrong with her face?" and I heard her mumble "Nothing is wrong with it, leave her alone" and walk away but I could see it bothered her a lot to have people notice something 'different' about me. It broke my heart so I stopped going to anything at school, even just driving up to get her instead of walking to her classroom anymore. Today when I went, I went in to get her and she just seemed so much more confident and happy, I guess the way I have been feeling lately is rubbing off on her and she sees the difference too.
Anyway, my leg is healing slowly...I have found that if I let it get dry it gets incredibly sore. Last night I put a thin layer of Neosporin + Pain relief on it and oh what a difference! Even if my sweat pants rubbed on it it wasnt so bad. So I went out today and bought another tube and am going to keep it on. I think it will speed up the healing process as well, since that is what Neosporin is supposed to do anyway, right? I bought these cute shorts and cant even wear any of them because it is so darn chilly here these days so the pants are starting to chaffe. It wouldnt be so bad if it wasnt windy...so I have to keep wearing the pants and its really uncomfortable. But next week is supposed to heat up so hopefully I can wear some shorts and get some relief on my leg.
I go back to the doctor onTuesday, of course I will keep you all updated.
Another change is that he is so much more sensitive to my reprimands. He has always been sensitive but now when I get frustrated (which is often, as I get tired easily for the month or so after a surgery and it takes me a while to bounce back) and use a sharp tone with him he just gives me this look like a whipped puppy and backs away. Its hard to even discipline him as it melts my heart every time he looks at me like that!
My 8 year old is often a mystery anyway but I have noticed a small change with her as well, though for the better. I didnt realize how much all of this has affected her, although I knew it was obviously because there was so much going on, but she doesnt often voice how she is feeling. She has been noticing me out and about more lately, we have been pretty social, had some friends over last weekend for a BBQ, then I had her girlfriend and her mom over for dinner last night (which was fun) and just generally been getting out more. So she has been asking me if now I will go to events at school with her, I used to send Chris because I was so uncomfortable with going, you know how kids stare but mostly because I just didnt want anyone to tease her about my face the way it looked before. One time I was at her school to get her and some kid walked up to her and said "That's your mom? What's wrong with her face?" and I heard her mumble "Nothing is wrong with it, leave her alone" and walk away but I could see it bothered her a lot to have people notice something 'different' about me. It broke my heart so I stopped going to anything at school, even just driving up to get her instead of walking to her classroom anymore. Today when I went, I went in to get her and she just seemed so much more confident and happy, I guess the way I have been feeling lately is rubbing off on her and she sees the difference too.
Anyway, my leg is healing slowly...I have found that if I let it get dry it gets incredibly sore. Last night I put a thin layer of Neosporin + Pain relief on it and oh what a difference! Even if my sweat pants rubbed on it it wasnt so bad. So I went out today and bought another tube and am going to keep it on. I think it will speed up the healing process as well, since that is what Neosporin is supposed to do anyway, right? I bought these cute shorts and cant even wear any of them because it is so darn chilly here these days so the pants are starting to chaffe. It wouldnt be so bad if it wasnt windy...so I have to keep wearing the pants and its really uncomfortable. But next week is supposed to heat up so hopefully I can wear some shorts and get some relief on my leg.
I go back to the doctor onTuesday, of course I will keep you all updated.
Tuesday, May 6, 2008
No news is good news?
I had my weekly check up today, and nothing new to report. "All looks good, more waiting" seems to be the theme of these visits but heck I will take that over "that's not supposed to happen" or "what is that coming out of your face" know what I mean? I think you do.
I have another few weeks of this annoying thing that's wired into my jaw but the sharp pain is less and less and has been replaced by headaches. Since my lower jaw is jutted forward a bit it is hard since I cannot pull it back in...imagine clenching your teeth and then leaving it like that 24/7. No fun, but better than mind numbing pain I guess. I have found less talking = less pain so I am trying to follow that rule. On Sunday night we had two of our good friends over for a BBQ (I got to try to eat macaroni salad and thats about it) and I talked it up as I havent seen them in ages, so as a result yesterday was very very sore and I even had to take a vicodin to sleep last night. But today I feel fine again so I am trying not to push it like that too often. I admit I am getting worried about when they take this thing out, I dont know how they will get it unwired from my jaw, they mentioned something about cutting the wires and sliding it out but I cannot imagine that would be NOT painful since it is, after all, attached to the floor of my mouth via wires they poked into my face from the outside! Ugh. But I guess we will cross that bridge when we get to it.
More Tagaderm (sp?) on my leg...its not ready to be left uncovered. I guess the rationale behind that is if it is left to air out so to speak it will form a large hard scab immediately which will be painful to heal from and making it difficult to walk, so they are letting it build up 'slowly' and keeping it covered is just making those cells generate slower I guess. I dont mind, so long as its not shooting pea soup everywhere or dripping on me when I sleep (sounds gross but it has happened before).
I have been feeling so much happier these days. These doctors have really given me another chance at life and I am so appreciative. I just dont know how I can ever let them know how grateful I am for all they have done for me. Just this simple surgery has changed me so much and how I feel inside. I can look in the mirror and not hate what I see, after 3 years of hating myself and refusing to look at my whole face (I got into the habit of looking at myself in the mirror from the nose up- very odd but that's part of how I dealt with it all). I am just feeling so happy all the time.
Of course I'll let you guys know if anything exciting happens, but so far I guess no news is good news right?!
I have another few weeks of this annoying thing that's wired into my jaw but the sharp pain is less and less and has been replaced by headaches. Since my lower jaw is jutted forward a bit it is hard since I cannot pull it back in...imagine clenching your teeth and then leaving it like that 24/7. No fun, but better than mind numbing pain I guess. I have found less talking = less pain so I am trying to follow that rule. On Sunday night we had two of our good friends over for a BBQ (I got to try to eat macaroni salad and thats about it) and I talked it up as I havent seen them in ages, so as a result yesterday was very very sore and I even had to take a vicodin to sleep last night. But today I feel fine again so I am trying not to push it like that too often. I admit I am getting worried about when they take this thing out, I dont know how they will get it unwired from my jaw, they mentioned something about cutting the wires and sliding it out but I cannot imagine that would be NOT painful since it is, after all, attached to the floor of my mouth via wires they poked into my face from the outside! Ugh. But I guess we will cross that bridge when we get to it.
More Tagaderm (sp?) on my leg...its not ready to be left uncovered. I guess the rationale behind that is if it is left to air out so to speak it will form a large hard scab immediately which will be painful to heal from and making it difficult to walk, so they are letting it build up 'slowly' and keeping it covered is just making those cells generate slower I guess. I dont mind, so long as its not shooting pea soup everywhere or dripping on me when I sleep (sounds gross but it has happened before).
I have been feeling so much happier these days. These doctors have really given me another chance at life and I am so appreciative. I just dont know how I can ever let them know how grateful I am for all they have done for me. Just this simple surgery has changed me so much and how I feel inside. I can look in the mirror and not hate what I see, after 3 years of hating myself and refusing to look at my whole face (I got into the habit of looking at myself in the mirror from the nose up- very odd but that's part of how I dealt with it all). I am just feeling so happy all the time.
Of course I'll let you guys know if anything exciting happens, but so far I guess no news is good news right?!
Sunday, May 4, 2008
New picture and a new worry
Well things are going very well. The pain on the right side is really starting to go away and only hurts if I try to stretch my mouth by smiling. I havent had a vicodin since Friday night. It is still lumpy a bit underneath and looks a bit weird under there still. It hasnt gone down much at all and I am worried it is going to stay that way but the doctor said it can always be made to look better later, I know the main concern is my chin/mouth/bone/teeth right now.
My new concern is the nerve on the right side. When I try to make any kind of face or something in the mirror its almost like it is paralyzed. I have never noticed it before..I am wondering if it is because I am scared to move that side because it is the painful side or what but I have to force myself to make it move or think about it (like 'move the right side up when I am smiling'), it doesnt just make movements on its own. I am going to ask the doctor about it and am wondering when all is said and done if I will have a lopsided smile. After everything I have been through that really is a small thing but it would kinda suck if that happened as I really do miss my smile since I am a pretty hysterical person :).
Anyway here is today's picture (with a new way too short hairdo that I guess I am hating less each day but still it is way shorter than I would like and I cry missing my hair). Oh and I am not mad I swear, though I look like I just got done killing some people in this picture:
My new concern is the nerve on the right side. When I try to make any kind of face or something in the mirror its almost like it is paralyzed. I have never noticed it before..I am wondering if it is because I am scared to move that side because it is the painful side or what but I have to force myself to make it move or think about it (like 'move the right side up when I am smiling'), it doesnt just make movements on its own. I am going to ask the doctor about it and am wondering when all is said and done if I will have a lopsided smile. After everything I have been through that really is a small thing but it would kinda suck if that happened as I really do miss my smile since I am a pretty hysterical person :).
Anyway here is today's picture (with a new way too short hairdo that I guess I am hating less each day but still it is way shorter than I would like and I cry missing my hair). Oh and I am not mad I swear, though I look like I just got done killing some people in this picture:
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