I have an update, got my teeth in

But I'm too tired to post it right now. I swear I will do it by Friday...and I have pictures! Stay tuned. :)

Yesterday's appointment

Another stressful one, but also one step closer to the finish line.

So this appointment they needed to once again remove my teeth and fit the metal base on to each implant. Then they took a panoramic to be sure that each implant was fitting *just* so. They were. So they then had to take this stuff and take an impression again of the base in my mouth for the new teeth. It had to be 'built up' though, because there are no gums down there (they were removed with the tumor, so I just have a floor to my mouth and thats it) to get a good impression. So what they did was stick one of those long wooden sticks in each of my implant holes (looks like a long wooden toothpick) and then cut them off, and then filled it with the stuff called "Blue Moose" (I think) to take an impression. That was so that the holes didnt get closed up with the stuff that they used, obviously. Then I closed my mouth and let it set.

Well when it was done, it didnt go as easily as they thought (surprised, anyone? I wasnt). The 3 wooden pieces came out of each implant hole but one would not. Of course, they had to remove it before they could take the base out of my mouth (along with the stuff that took the impression) so it took them nearly an hour of twisting, yanking and pulling just to get the damn thing out of the hole. I guess my saliva had mixed in with the solution they used for the impression and caused the wood to stick to the hole very tightly and kinda dissentigrate. It was awful. Finally they got it out but I was so anxious the whole time and scared that they wouldnt be able to get it out. All in all my mouth was propped open from 11 am to 1:15 pm. I was very sore afterwards, because it just takes its toll on your jaw when you arent used to having to open so wide. Also, keep in my mind my new jaw is very very thin, as I only got a couple cm of bone in there from my graft, so any amount of yanking and tugging on the teeh or it really hurts and makes it very sore after. But the good news is they got the wooden piece out, got the metal base out + the impression stuff and sent it to the lab. From my understanding, the next step is they will do an impression of my teeth set in wax, which is supposed to be an easy appointment (cant help but wonder what that means, ha ha) and then the final appointment they will send teeth that are all attached together to the base. Voila! Teeth, and done. For now. God knows for how long.

I really wanted to bring my camera but alas I forgot it again. Next time. I told my dr how I want to write a book and he said they would be able to help me remember all the details if I really wanted to. He also thought I should consider being a dental assistant. I cant help but say I have really thought so as well. It was funny, while I was waiting for my panoramic, the girl ahead of me's image popped up on the computer and I was able to point out all the parts. "That is 2 implants, there and there, right?" "Yes." "Two root canals, there and there?" "Yes." "That's a small bridge of 3 teeth, right?" "Yes." "That is a filling there and there." "Yes." "And there, that cloudy white bit, that is how high her bone goes from her gums, right?" "Yes." Ha! They should pay me for this stuff.

Maybe sometime. I'll keep you posted. As usual.

Good times, my friends. Good times.

Well, yesterday's appintment was....something. The base plate for my permanent bridge was done (yay!!!), but was in 4 seaparate pieces. This is because they cannot make something that is just shaped like the curve of my lower teeth- it has to fit over each implant post exactly so or else the implants could break later on from the pressure of chewing and such. Two of the implants are angled, and two are straight up and down in the bone. So what he needed to do was take off this bridge of teeth, screw each of those 4 parts into each of my 4 implants, and then when they were all aligned and screwed in exactly perfect, kinda melt them together temporarily so it would be the exact shape it needs to be for the lab to go ahead and solder it all into one final, perfectly custom made piece. Got that?

Ahh, if only it was so easy! First, the temporary teeth are really hard to get off. I swear I hear the poor dr muttering under his breath and swearing to high heaven every time he has to take them off; he probably hates me by now. He had to pick pick pick, twist each implant screw and shake them all around until finally they released and came out. That is a ton of strain on my jaw, as I am not used to having my mouth open extremely wide for long periods of time (no jokes, please) and having all that pressure on it was insanely uncomfortable.

Then there is the tension I feel as soon as I sit in that dental chair. Something just comes over me... I start to shake and get really anxious. Like I have said before, it does not get any easier having procedure after procedure done in your mouth, in fact, it gets worse because after all you have been through you just do NOT want anyone touching in your mouth ever ever again. Sooo...once the teeth were off I get that oh so uncomfortable frightened feeling. Well instantly I tasted blood and cant figure out why. The dr looks concerned so I start to freak out. I can feel a bubble or something under my tongue coming from the floor of my mouth...he said it looked like the tissue was rising up under the temporary bridge and was irritated and inflamed. It was bleeding, and he said that he needed to take it off. Um, what?

At this point my anxiety level is through the roof. They then say they need to cut it off with this thing that will cauterize the vessels so it doesnt bleed everywhere. Nice. SO they poke me with needles to numb me up, which tastes awful, and then they make me sit on this thing (all the while I am hysterical, crying and shaking, I just could NOT control myself) that looks like a black pad with a cord coming out of it that was attached to this thing that looked like a long pair of tweezers which I knew were going to cut off part of the floor of my mouth. I joked "are you going to electrocute me now?" but the truth is I was only half joking! I swear nothing would surprise me anymore after what I have been through.

So, I am really upset and scared and I could tell my dr was getting upset with me, which only made me MORE upset and scared because I wanted him to know I was trying hard to compose myself but was insanely afraid of what was going to happen. There was also the fear in my mind "what if they cut this thing and stuff comes out of it, like an infection?" But anyway, they lopped it off and cauterized it, all this smoke was coming out and it smelled just awful. I now know what a burning body smells like, blech. Disgusting. And awful. It turned out to just be excess tissue build up after all of that mess.

So then after the bubble was gone he was able to fit the little metal pieces of the base onto each implant, screw them on and then he used this stuff paired up with what looked like a UV ray thing to I think oh so gently attach each piece together so he could get the exact shape of the floor of my mouth and implants. Then he let it sit, and then had to unscrew it and gently lift it out. This will be sent to the lab for them to solder together permanently. All the while my mouth is tasting like blood and crap, there is slobber everywhere because of the numbing solution and I was just DONE. So he got the temporary teeth back on and told me to come back in Monday for the next step. Honestly, I was pretty out of it, mostly from how I exhausted myself crying and getting all worked up, so I dont remember exactly what he said was next but I am only a couple of appointments away from getting my final bridge of teeth then hopefully will be done, at least for now or until something else comes up. Its crazy to think it is so close after 4 1/2 years of this!

So that is my disgusting story of excess tissue cuttage, cauterization and smelling of burning flesh for the day. Now please, DO go and enjoy your dinners, everyone. Hopefully my next post wont be as disgusting.

And Dr Wong, if you are reading this, you're still my favorite doctor even though when you asked me if I was still mad at you I turned my head and refused to look at you like a 3 year old would. I am sorry I was such a baby. No hard feelings, huh? :)

We can move forward!

I just got a call today...the lab was re-opened! I go in tomorrow first thing. I am not too sure for what but all I know is its to do the next step for the final bridge. Thank God! I was so worried, since we weren't sure when it would be re-opened and I was worried it never would be. Thank goodness for all of the prayers and good thoughts, thank you! I will keep you posted when I know more. Wish me luck!

Stressing a bit

My denture decided to get all floppy again, and for about 4 days I wasnt even able to eat anything. It had never been that loose before and it was very unsettling. Whenever I even drank anything I could feel it lift up on the right side where it had previously cracked, but the whole thing just felt seriously unstable.

So I went in yesterday to see if they could tighten it. It had cracked again in the original broken spot, and I dont even know how since ever since I got it fixed I was scared to eat anything anyway, so I was living on extremely soft foods, but I think it was just going to re-crack anyway because of the location. They ended up having to remove the teeth....when he said that at first I started to cry. He asked me why I was crying and said he needed to remove them in order to fix it properly, and also to clean it for me. I guess it was just so scary for me to have them off for a lot of reasons. The biggest being that they would not be able to get it back on or something would break in the process. But he also needed to check one of my implants that he said he was worried about. That scared me even more, because I am down to only 4 implants, and with a whole bridge of teeth that need to be anchored if I lose even one this whole process just isnt going to work.

So they got the teeth off, and it was pretty rough on me. To be honest, I was surprised at the violent emotions that came out when they took them off. As soon as I felt that familiar lip-caving in sensation of there being no teeth in there I cried. I cried the whole time he was fixing it, and until it was back on. I guess it just brought back memories of all the time that there were no teeth in there, how people stared at me every day and I just had to deal with it and suck it up. It was just a very helpless feeling I guess. But anyway, it turns out the implants look okay, the one he was worried about had just loosened from the screw over time, so it was still firmly anchored in place, which is good. Loosening of the actual implant would have meant a failure, which we really shouldnt be having at this point so that was worrisome, but hey its me, right? So I was scared. But after quite a bit of stress he got the teeth back on.

I can honestly say I havent felt them this anchored in a while. It is so nice to be able to eat and move my jaw around and feel the teeth staying perfectly in place (for now I guess). The biggest problem is that they are only firmly down in 2 of the implants (the ones on either side in the back) because the two closer to the front had tissue collapse back over the hole and they werent able to get the implants screwed back in firmly. He said when they do the permanent ones they will have to remove some of the tissue covering those implants to get back to the hole, which of course doesnt sound pleasant, but we'll cross that bridge when we get to it. So I am running on only 2 implants being anchored to the bridge right now, a temporary fix, and it makes me nervous. As a result I am really limited still in what I can eat which sucks, because at this point I should have had the permanent bridge in and be able to eat almost anything but I still cant. I miss eating chips and sandwiches on rolls and steak. But hey right now I am just happy there are teeth in there still and that I can eat some things and go about and people dont stare at me like there is something wrong with my face(as much). Its funny and sad that after all the downfalls and issues I've had to deal with how my expectations and what I am 'happy' with have really lowered, huh? But such is life.

Just wanted to update. At this point its just a matter of trying to keep this bridge anchored and in one piece until they can pay the lab and finish my permanent bridge. God knows when that will be, but I am praying every day for a miracle.

Hope all is well with my readers out in blogland.

Broken bridge, a temporary fix, and budget cuts

Ok, so this has been a rough coupole of weeks.

First, last week at work I broke my lower bridge of teeth somehow. A piece just snapped off. I was eating a donut, but I am fairly certain it happened a week before when I was eating something else. I heard a loud cracking sound in my right ear, and funnily enough it didnt alarm me too much, as my jaw makes all kinds of funny noises (as jaws made partially of titanium tend to do here and there). Well, I was at work and the back tooth on the right just literally fell off with part of my bridge attached to it while I was eating on my break. I freaked out of course, and went home from work. Where it had fallen off was so sharp that it was cutting into the soft tissue of my cheek- it was awful. I went to the hospital early the next morning and there was pretty much nothing else they could do. The funny thing was, that I no longer heard that odd creaking sound I've been talking about, and the rest of the bridge felt very firm, unless I chewed on the other side. Of course, the whole thing is off kilter now, being that one tooth in the very back is missing, so chewing was off limits all weekend. As Dr. Wong told me- imagine a bookshelf, and you putting so much pressure on one side that the other side just flips up and tosses all the books off. That is how it was with my bridge- putting too much pressure chewing on one side could snap the whole thing in half, and ruin my implants in the process. They told me modified liquid diet, soft foods diet, so I ate macaroni and cheese, and anything else I could mostly just swallow without choking myself to death. Sigh. They pretty much just said come back on Monday when Dr. Wong is here, and also told me my xray looked like I hadn't damaged the implant when I broke the back tooth off. So thank God for that.

So today I was at the hospital most of the morning, Dr. Wong didn't want to remove the teeth (for obvious reasons, most being that it takes the poor guy at least an hour to get them back on, you know, me being the patient with all of the "fun" issues). So he decided to repair it with it still being in my mouth. That was fun, he ended up pouring some kind of acrylic/glue-y type substance (just a guess, I didnt ask but it smelled like paint thinner) over the broken area, after getting the piece back over the exposed implant and screwed onto it. Then I had to bite down on it for 5 minutes, while it hardened over the break. It was awful. It burned (he said to wait til it got hot then tell him, but it instantly burned, since I think my cheek was so sensitive from all off the cuts the broken side gave me over the weekend) it also tasted awful and smelled. I wanted to gag. Well, it seems he got the piece re-attached, hopefully it wont be for much longer that I have to go with this temporary bridge because I haven't been eating hard things, mostly just soft things, and this still happened.

The worst news I got today was that because of budget cuts, the hospital was unable to pay the lab where they do their work on bridges and such, therefore, I wont be getting my permanent bridge until they decide to give the hospital the money they need to pay the lab. In this economy, who knows how long that could be? And unfortunately my bridge was only made to be temporary. And I know I am not the only one who's bridge has broken; Dr. Wong mentioned he had been doing a lot of temporary repairs just waiting for the budget to be fixed so they could get back into the lab to finish people's permanent bridges. I pray my denture can make it however long...I just cannot be without teeth, I am grateful my bridge broke where he was able to fix it, and that I wont have to go without, as I am sure some people are having to do. It's awful when people have to go without things like teeth in hard financial times like these. I cant imagine if they said they just had to take the teeth off and couldnt give me a timeframe of when they could actually fix them. As it is, I am still on a soft diet for the next few days til this fix "sets" and I am hungry! Its rough.

So, if you read this I could use some prayers, please pray that my temporary denture holds up? And please pray that something works out in the state's budget that my hospital can again re-open their lab so that people like me can get things we need to survive. Having teeth isn't just a cosmetic issue anymore. What a bad situation... as always I know others have it worse than me. Some are trying to come up with the money to cover their implants and teeth, and I know I dont have that issue (being a case study on ameloblastoma at this hospital) but still- if you could find it in your heart to think of me, and of this hospital, please pray that things work out. I dont know how much longer I can hold out. :(

Still waiting

I wonder how many of my posts are titled that?

Yes we are just waiting these days. I am working a lot of hours, so I have been tired lately but it is very nice to be out and among "real" people. You can forget that you have anything else going on when you try. Next week I am going to call and see when my next appointment will be. Poor Dr Wong has to come out on his days off to work on me, because it takes so long every time and he cant fit me into his regular schedule. I am not too positive what the next step is, so I guess it will be a surprise. But I will, as usual, keep you posted when I know more.

Dr appointment- the good the bad and the...ugly?

So yesterday I had my appointment that I had been dreading. There were some good parts and some bad parts. Good news is that I managed to make it through without crying or anything. I get really worked up when I am having too much done in my mouth, mostly from fear of pain after all I have been through, but I swore to myself I wasn't going to do that yesterday and I ended up doing really well. It took a while to get the teeth off. They had to pick at the "filler" they put in there, which is this thick cement-like stuff they stick around the posts I guess to keep it sealed or so things dont get in, I wasn't too sure about why it was in there. Anyway, the picking hurt because it jarred my jaw around too much (it's really thin, so jarring movements do give me pain) so he ended up using a drill on a slow speed to drill it away. Then he picked the cotton out that was also under there, and then he had to work on each individual implant to loosen the bridge of teeth off the implants.

It did take a long time and what was the most uncomfortable thing, I think, was having to keep my mouth open so wide for so long. I am sore today from it. Finally the teeth came off, and it wasnt as bad as I had expected. I kept apologizing if there was anything stuck under there...I do do my best to clean under there but it is really hard! The space is so tiny but still does collect food under it. Then, after the teeth came off, he had to screw these little metal things into each hole, I guess to keep them open. When you remove the denture, the extra tissue that is around the holes instantly close back over them and it becomes difficult to find them again. One of the holes he was unable to get anything back into it so he just had to stick something on top of it so he knew where it was. He then took an impression of my top teeth (which always makes me gag) and instead of taking one of the bottom from inside my mouth, he used the bottom of my denture to take the impression. Very smart, and that stuff is disgusting so I certainly wasnt complaining! He then poured it into a mold and made an image of the way my top and bottom teeth come together, as well as had the impression from the bottom so that at the lab they can now make the metal base to perfectly match the floor of my mouth.

We basically did 3 appointments in one looooong appointment. Then a couple hours later it was time to put the teeth back on. He went in and took the little metal things out of each hole, then stuck the denture on top. It was hard to get it aligned again the right way (the denture has little corresponding metal holes over where each implant goes to attach it to the implants) but he got it on there, he then packed around each implant area with more cottom, and screwed the whole denture back into place implant by implant. That took a while but it wasnt too painful. I did have to go home and sleep after it all, it was pretty emotionally exhaustive.

Phew! Sorry such a detailed explaination of the whole process, but I know some of you are going through this procedure or are waiting to, so you know what you have in store for you. I am sure I left stuff out, but it was a bit of a daze for me, mostly since I was so worried I just ket waiting to get some bad news.

A couple of other things happened as well. First, remember the "discharge" I said I was having? Only in the mornings, but on the left hand side it looks a little oogy sometimes until I clean it, then it doesnt happen the rest of the day. Well, Dr Wong said it did look a little puffy there but when he called in my other dr to look at it he said he thought it was probably that the denture had come a bit loose there and it was build up from food and such getting trapped in there. Honestly, Dr Wong said that if he was worried he'd be the first to tell me but he wasnt, and I trust him. So they went ahead and put the teeth back on. We had two complications from that point. One was that they were unable to get one of the implants to screw down onto the teeth again. I think that it was the one where the tissue collapsed over the hole again but am not too sure, but it was on the right side where I only already have one implant left since the other one came out (originally I had 5 implants placed). So I am down to only 3 implants being tightly secured. He said that he is just going to worry about that other one more when they put the final teeth on, as it was too much hassle since I am only going to have this bridge of teeth on for another, what, maybe 8 weeks or so.

The other complication was he said it appears that my whole bridge or lower area has "shifted." Meaning, it is no longer in the middle for some reason but he isnt too sure why it has shifted. That did worry me, I instantly thought of something being in my jaw again shifting my denture (ie, recurrence, I think we all worry about this constantly), but again Dr Wong said he was not concerned at all about it and that it would (hopefully) all work out in the end. Mostly it just means my bite is off a bit. They check your bite after the teeth are on, basically they take this little strip that looks like foil but isnt, and stick it in between your back teeth and tell you to bite and make a chewing gesture from side to side. Then they check the other side. It leaves an impression in the paper so he can see how my bite is, and I know on the left it is way less than on the right because of the shifting. But again if he says not to worry I'll try not to.

My final complication was after I had left already. I came home and ate some lunch (peanut butter and jelly sandwich). It felt great- no creaking or movement and I was able to chew really well. I was so pleased...until near then end when I felt it come loose. *sigh. So now my denture on the right feels SO unstable. I know it is related to the fact I only have the one implant secured on that side now because of that other one not being secured, but it is so disconcerting I cannot even tell you. When I move my jaw side to side, I hear the unsecured implant moving around in there. It bothers me. I know from this point on I will have to eat soft things until I can get this temporary bridge out and my new permanent one in. It's just frustrating, as it seems there is always always always something more to deal with. I am worried still a bit but not as much as I was before. I am still worried about that one area but am hoping now that the teeth are very tight over there it will work itself out. I got more of my medicated mouth rinse (Hibiclens) so will be using that faithfully still. Also, I am worried about the shifting. As with everything else I will just have to take it one day at a time.

Finally, this month it has been 4 years almost to the day that I had my first surgery. My son was very young, I think only about 6 weeks old, when they went in and took out my ameloblastoma. Its bittersweet looking back at all the time that has passed. I really have come so far in so many ways, and regressed so far in others. For every step I move ahead in this process I seem to take one back emotionally and mentally, but I am still struggling through it all. Praying seems to help a lot.

And I am out now for the day, this has been a long post! As usual, I will keep you posted, faithful readers.

Still waiting and worrying

I cant shake the worry that when they go in and take these teeth off for impressions that we are going to see something bad underneath. It is so disconcerting not to be able to see what is going on underneath. I think that is why I am always anxious. I havent been able to sleep very well these days, I think it is getting to me.

I swear on the right side where the gap has widened I feel like a ridge or something when I poke my tongue in there. It almost feels metal-ish, but then I think how could I feel anything metal there on the floor of my mouth. Then the bad thoughts creep in like what if that is something bad happening? What if my bone is eroding for some odd reason? What if what if what if?....blah. I wish I could shut those thoughts off.

Soon, though. I go in August 3rd.

My circulation to my face is kinda messed up too. Lately my face has been getting really red and warm for no reason. It happens when I overwork myself but then it doesnt go away for quite some time. It's embarassing.

Sorry I'm so darn jolly lately!

=(

I am feeling a little down today.

I had something really embarassing happen to me yesterday. Well, actually two somethings that have brought me down a couple of notches. I am trying really hard to forget them but they took blows to my already fragile self esteem and it's just been kind of a rough morning for me today because I am still thinking about it all.

Yesterday I was in the car driving to get my daughter from her Day Camp. A bit in front of me is this car that is filled with guys. Well, they are leaning out the window and yelling things at me, which I can't really hear because my window is rolled up, but my son's window was rolled down. I was really embarassed and just kept driving and not looking at them. I ended up being at the light next to them, which I was trying to avoid but couldn't because they got into the lane next to me. Grrrr. So anyway, at the light I hear them saying nasty things, cat calling and all of that. I gave one of them my evil-mom-dirty glare and one of them was like "you're an ugly %$#@! anyway!" and they all started to laugh at me. I was beyond mortified. I literally wanted to die right there.

So I was feeling really upset and embarassed when I pulled up to Ashley's camp and she takes the time to inform me that one of her "friends" had made fun of me. I said "why?" she said "because they asked me what happened to your chin and that it stuck out funny." That was the last straw for me. I got really upset...I know I shouldnt care what a car full of little delinquents and some 4th grader said about me, but I do. It sucks. I get to this place where I think I am okay with looking "off" and then things like this happen. I mean, its a big difference from having to go out in public with your face swollen so you look like the elephant man and your chin caving in and what I look like today. I look fine from the front and weird from the side, and I hate that. I dont know if it will ever be fixed though. I am trying to not be greedy and be happy with how I look but its really hard when little things like this happen.

SO, that is why I am down today. I thought I was over caring what people think about how I look. I wish I could be there. I am trying really hard though. Hopefully one day I can just put this behind me and just not care anymore. I think what I hate the most about it all is it makes me feel so weak and lame and vain and I really hate feeling like that. :(

Infections

Ok so I am pretty sure after almost 4 years of non-stop surgeries and medical procedures my body has decided it hates me. Really. I am also fairly certain my immune system has decided to completely hit the road and go find some other healthier body to take care of, because mine hasnt been working for crap ever since I started this journey with ameloblastoma. Wish it would have sent me the memo.

Every time I catch a common cold, or am around someone who is ill, I catch it. Its not a matter of if I will, but when. I literally can count the number of days after I come in contact with someone who is ill when I will catch it, and that number of days is 2 my friend. Two whole days of being healthy then BAM! I have whatever illness I was in contact with, except I have it times 10 and am completely miserable. Then 9/10 times I end up on an antibiotic of some sort as well due to an infection. Like I said, immune system has hit the road, jack.

My husband and son had colds last week. Chris never gets sick, and when he does it last about 24 hours then he is up and about and just dandy. He's lucky I love him so much. Actually, we always blame it on the military's medication they pumped into him during boot camp, because after that he was just NEVER sick, he has the immune system of...well...a really healthy person I guess. Anyhoo, so he was pretty sick with this cold, and it lasted about 5 days which was unusual for him. My son had it as well, and he is still getting better, he just still has a runny nose. So on Saturday, about 2 days into their sickness, I began to not feel so hot myself. Come Sunday after work and I was in bed with aches, fever and my nasal passages filling with mucous and crap. Well every day has been a bit worse since then, and now my ears and chest are filled with this stuff. So off I go to the dr today to figure out what it is. I am about 99% sure it is a sinus infection again and I will end up on antibiotics again. I am forever on antibiotics. I just ended a round of them for a serious UTI and I had to have 2 rounds of it to finish it off. I wonder if they shouldnt just keep switching them up on me and just keep me on them forever to safeguard me from every little sneeze, cough and handshake I come into contact with for the rest of my life. Grrrr.

Anyway, rant over. I'll keep you posted. Send some healthy vibes my way please, if you can spare them. I'd appreciate it. And if anyone sees my crappy immune system running around somewhere, tell it I need it back in full working order, stat. Thanks.

Well...

if the doctor is not worried, I will try not to be.

I just think my biggest fear is that when I go in and they take these teeth off, something will be going on underneath. I absolutely hate that I cant look for myself and see what is happening (even though I can see a LOT more now than I could before, and I guess it looks ok??). It makes me feel sick to my stomach to think about anything happening as far as I have made it. I dont know when I will be able to sit back and just be happy about how far I have come, rather than worrying about every twinge, ache or movement I feel. I hate that the most.

Something's happening...

For some reason the gap under my denture is widening to where I can see under it in places I wasn't able to before. I am getting really worried, but when I call they just say that it is probably fine and not to worry. I just dont get why it would be changing now, so long after surgery unless that is just the way it is still healing. I cant stop thinking about it and being worried.

Great news

I got great news at the doctor yesterday. We are ready to move forward to the final procedure for the permanent bridge of teeth! I am crazy excited about it. It is going to be a somewhat long(ish) process, with a series of 5 appointments, each appointment with something different happening. I didnt quite follow it all, but of course I will blog about it as it all goes by. The thing I did catch was first they have to remove my bridge of teeth to make an impression that will be sent to the lab (scared about that and wonder if it's going to hurt- I've always been under anesthesia when they did that). Then they make a metal framework for the base of the new bridge of teeth and send it back. Then I guess I go back in and they have to fit it in there and "tweak" it to see what all needs to be done to make it a perfect fit. It has to be perfect, because your bite and everything have to match up just so. So I guess that will take some time as well, and then they send it back and they attach the bridge to the metal framwork, and then put it all in. I feel like I am leaving something out though...hmmm.

I did make a joke that I felt like a European car and all my parts had to be ordered. My doctor said "it costs about just as much." Scary thought, that.

Well anyhoo, I am excited like I said...this bridge has been creaking a lot when I chew on the left and its very nerve wracking. I will definitely have to stick to softer foods, as it would be my biggest nightmare for it to snap or something and me be stuck with no teeth again! I can chew meats and things but when I take too big of a bite of meat and chew on the left I hear it get creaky. Also the final bridge wont have that huge gap on the right side so I wont have to worry about chunks of food going under there. That has been the biggest pain ever- although the Super Floss is working pretty well for that.

They also briefly discussed what they are going to do about the indentation between my chin/underside of my face...it sticks out and it looks very odd and "pointed" from the side, I am so self conscious of it...they passed on using fat from my backside because they said my body would just re-absorb it. What it sounds like is I have an option in terms of different "fillers" but none of them permanent. One of my doctors said he was going to do some research on some more permanent ideas and see what they come up with. Of course first priority is getting this final bridge in, and working before we worry about the other.

So begins (hopefully) the last leg of my journey. Wish me luck! And of course I'll keep you posted with losts of pictures for the curious. :)

Sorry I've been MIA

Things have been crazy...I've been working a lot of hours, all at night and on the weekends so when I am not at work I am exhausted and chasing my kids around all day long. Its rough! I go in Monday to see my dr's again, its been a while. I havent had any bleeding so hopefully thats good but my jaw is SO creaky. I really hope its just the teeth and not the actual plate/bone that is creaking! They are going to take an x-ray that day so we'll see if anything is going on in there we should be alarmed about or not.

Hopefully the permanent teeth will be going in soon with no complications. *fingers crossed.*

Meh, more blood

Ok so this morning there was blood on my side of the bed where I lay my head...not a ton but enough to worry me. I called the hospital and the dr said not to worry. I wish I could not worry! I spit out blood twice yesterday too, just a tiny bit but still. He said I am probably irritating the tissues up underneath the denture when I eat, and truthfully I know that is probably the case because food gets stuck under there all.the.time but in the past bleeding has always = bad stuff, so I cant help but be anxious over it all.

He told me to go get stuff called "super floss", its a really tough floss that I can thread underneath and work back and forth to try and get old food out. I am going to go look today, hopefully I can find some, though I have never heard of it. I am anxious for the real bridge of teeth to be put in, the bottom will go all the way down to the floor of my mouth and I wont have that huge gap underneath so all of these issues will hopefully be resolved then. I just cant shake the nagging feeling that something is wrong, though, and I hate that.

*Sigh. Someone tell me not to worry! :(

Yuck

I spit out a little blood again this morning when I woke up...I rinsed with my medicated mouth rinse and it didnt bleed anymore, then when I laid down again this afternoon to nap when I got home from work (I worked an early shift) I tasted some more blood when I woke up and spit out a little bit. I am worried, but trying not to get too carried away with worry. If it bleeds a lot, I will go in. If not then I will just hope that its irritated tissues again. :( We ate Japanese food last night and I did have a lot of rice get trapped under there, so I am wondering if some may have worked its way in and made the area super sensitive. Hopefully that's all it is. I continually feel like I am on the brink of some new kind of medical disaster- will that feeling ever go away?

Book Titles Anyone?

Here's just a few I've been tossing around lately. :p

How Luck Kicked Me in the Nuts- Twice (But You Can't Keep a Good Girl Down!)

Congratulations, It's Not Cancer...But We're Going to Have to Remove Part of Your Face!

The Tumor That Ate Chicago (And Part of My Face)

You're Going to Have to do What to my What using my What? (And Other Assorted Witticisms From an Ameloblastoma Patient)

Creaky jaw

UGH. I am so annoyed. My jaw has been so creaky lately...more and more so as time goes by. It is very disconcerting. I mentioned it last time I was at the doctor and they all said the same thing (teeth feel fine and anchored, etc) so then why is it getting worse? Its only on the right side, too. I have one less implant on that aside, because I lost one that was over on that side and that is why I am so nervous about it all. Its just hard to describe the way it sounds and feels when they ask me what I mean by creaking at the doctors...when I press on the underside of my jaw I can actually feel movement of the entire thing...I dont know if its the plate moving too or if its just the teeth, I think its just the teeth but I dont know! I wonder if this is just how it will be for the rest of my life. Its so stressful because I am having a hard time eating (creaking reminds me of things breaking, so I cant really eat what I want to without worrying) and sleeping, as when I lay on one side the whole thing creaks a lot. *Sigh. I hope this is just a temporary thing, maybe it is the temporary bridge of teeth since it is made out of plastic and it will stop when the "real" bridge goes on *crosses fingers.*

Other than that things are just dandy.

All looks fine

So I had a good appointment today. The area looks healthy, and I havent had any more bleeding. Dr. Wong was loath to remove the teeth, because they really arent meant to be removed until the permanent ones are ready and he said you can risk doing damage if you do do it, so I didnt have to go through that (thank goodness, you'd think I'd be less of a wuss about stuff like that after everything I've been through but it still makes me cringe thinking of anything being done in there).

Remember that lump I had inside my mouth where my denture lay that they said was filled with fluid when they went in? They cleaned it out, but the dr said perhaps it had filled with old blood and slouthed off and that is what all that blood was from. It was underneath the denture on the side where there isnt a gap, so I wouldnt have been able to get under there and see it anyway, so maybe that is what happened instead of the blood coming from that one area we thought it had come from. Who knows I guess? Just more of "keep it clean" and "make sure you dont eat very hard things" etc and go home and wait.

So they said that if I experience any more bleeding to come in but other than that I go back in again next month. I am so glad because I was so stressed and worried about today and it turns out that (hopefully) what happened was a fluke.

Thanks for the good thoughts!

Bad scare today

I woke up and went to the bathroom and spat a large mouthful of dark blood into the sink. It kept coming out and I was so afraid. It was right in that area in front where the plate is exposed a little bit. I ran and dropped my kids off at my parents and drove like a madwoman to the hospital, crying the whole way because I was just so sure I had an infection.

The news is, well, that we just arent sure what happened. There are a few things they are saying. One is that maybe a piece of food got stuck down in there and irritated the area and it got a blood clot and just dislodged itself, causing all the bleeding. Another is that I could have upset an implant, which is less likely but the whole thing has been creaky lately when I chew and its possible from chewing on it so much I have done something bad to one of the implants (which I am so afraid of, but we wont know til Monday). Another could be infection....but really I am not exhibiting any signs (fever, swelling, redness, inflamed tissue etc). They said the area looks pink and healthy, except for one small area that is irritated appearing but other than that it "looked" good from the ouside. Although the last time I had a major infection I wasnt showing any of those signs either so I am still feeling very very unsettled.

So they cauterized the area with silver nitrate to make it stop bleeding and on Monday I am going to see Dr Wong who is going to have to remove the whole thing of teeth and check everything over (sorry Dr Wong if you're reading this, you know I love you). He didnt want to remove it until they had the final set of teeth ready but its looking like they will have to. The dr also said that it is harder to see if I have a pocket of infection or something going on in there with all the hardware in my mouth because it causes scatter in the x-rays so it kinda has to be out for them to get a really solid look in there. I am so worried and anxious. In my heart I am so afraid of infection again...all the way there I was almost sure they were going to say I had one and the plate had to come out. I am so done with major surgeries, and I just wish my body would act normally so I can be normal now the way I want to and be done with this mess.

I know I wont sleep until after my Monday appointment is over. :(

Scoop and curettage

Why why WHY are doctors even still doing this procedure in terms of removing ameloblastomas? Isnt a doctor's hippocratic oath to "first do no harm"? This is the easy way out...its not a matter of IF your tumor will return, but when. And, the second time around, will it still be the non-malignant variety or will you be being told you have cancer and that you are going to die, not just have to have part of your jaw and teeth removed? Why chance it?

I just dont understand this at all. I get so angry, because when I had my first ameloblastoma back in high school (it was 1998 and I was a junior) the oral surgeon then didnt say anything about what this was but just scooped it out and sent me home, with no "by the way, this WILL return so be prepared" he just said to "keep an eye on it." I was young and naive, my parents had no idea what this thing was and we all just thought I had dodged a bullet...now that I know so much more I feel angry that I wasnt informed enough about this thing to really make sure I got routine CT scans and health care before it returned with so much vengeance that I lost as much of my lower jaw and teeth as I did. My life wont ever be the same again. To do this to people who have no idea what they are up against is poor medicine, in my opinion.

I have been feeling a little bitter lately...I both loathe and love the ameloblastoma group on yahoo (sorry guys) because every time I open my email I relive what I have been going through the past almost 4 years now. The old fears return every time I read someone's message about finding out they have an amelo.

I am sorry this is not an upbeat post at all after it has been so long, too. Just under a lot of stress from the move and all and the gloomy rain and clouds. Hopefully it passes soon and my next update will be more cheerful. I see the doctors again on April 20th, will update then.

Gah!

Life is crazy...I am working again, but I swear I will be back here in the next day or so to post an update. So far all is well. As they say, no news is good news, especially coming from me! :)

Teeth pics and more

As I promised:



This is an awful picture of me (it's been a long day), but see how much more "beefed out" my lower lip is? I can smile with at least my top teeth showing now without my lower lip sinking in:



One of my hip scars, just to see how light they are now (someone asked me about this, it's been almost 2 years and they get lighter all the time). They follow the contour of my hip bone:



And this one, just for kicks...our cat sleeps on her back like a dog every night...this is her sleeping with me the other evening when I fell asleep watching TV after a long day:

Post op tomorrow

I go in early to see the surgeons and prosthetics dr tomorrow. I am so glad because this is getting ridiculous! I cant barely eat and I cant even talk anymore it hurts so bad- the underside of my tongue is all raw and cut up on the left side. It looks like they either shaved the corner off the very back molar on the left side of the denture or it broke because there is a jagged piece just sticking out and that is what is doing all the cutting. So I am looking forward to having some relief from that- plus I am starving! I've already lost 5 pounds in less than a week (which isnt bad, I could stand to lose about 5 more but starving to do it is no fun!).

What has me a little worried is I am noticing whenever I eat or drink anything it gets caught up in the space under the teeth...there is a gap a few centimeters tall between the floor of my mouth and the denture and I am constantly having to clean it out and rinse with my peridex. It seems like no matter how careful I think I am, I find something trapped under there later! I am just so frightened of getting another infection under there, especially since I had one when I went in and for some reason my body doesnt show signs when I have one (fever, fatigue, pain and redness etc). I am going to end my antibiotic on Tuesday and I am going to ask for another week's worth tomorrow just to be sure...I cant help but have an ominous feeling about that infection I had, especially due to the fact that now there are teeth on top of it and I cant get a good look at it anymore and feel I cant clean it properly. So, I am going to talk to my surgeons tomorrow about that and see what they have to say.

I'll keep you all posted. Someone eat a big steak for me, please.

Day by day...

I often find myself in a constant state of unrest and worry when I think about what all is going on. Little things will trigger a crazy reaction of panic where I just cant think straight and start to get very anxious and nervous. Is my tumor coming back? Is that an infection? What is that new pain? What is that new bump?

Take last night for example. I had a wonderful night with Chris, we spent some time together reading some new books we had bought and cuddling on the couch (I know we sound so old already, dont we!) Well, when it was time to go to bed I was feeling fine, in a great mood actually since we hadnt spent any quality time together in about a week with my surgery and both of us just being too tired to do much beyond say hello at night when he got home from work.

So we go to bed, and I start to take the pillows off. I get down to my 2 pillows and notice...a big yellowish brown ring on one of my pillows. Seriously, it was like the size of my head. I immediately started to panic- obviously it came out of my mouth. I still have an infection, or else I have a new one from this last surgery. I started to cry and get upset. Chris of course tells me not to worry and just go to sleep and talk to the doctor on Monday when I go in, but I couldnt sleep very well at all.

I woke up this morning with an old hymn in my mind from church. I had gone to bed thinking of some old songs we used to sing in kids camp when I was growing up so I must have had hymns on my mind, because we don't really sing hymns at church much anymore, they've been replaced with choruses instead. Anyway, the song I had in my mind was this:

"Day by day, and with each passing moment,
Strength I find to meet my trials here;
Trusting in my Father's wise bestowment,
I've no cause for worry or for fear."

I am not sure what compelled me to do it, but all of a sudden I remembered a month ago when I had spilled a cup of coffee on one of our extra pillows and had to take the pillowcase off and wash it, but the pillow underneath still had a huge (that's right) yellowish brown ring left on it. I got up, took the pillowcase off the extra pillow, and took my second pillow and matched up the two stains. It was just an old coffee stain from a pillowcase I hadn't used in a long time. *Sigh.

I posted this for two reasons. One, so you can see the littlest things that can ruin my day and how sometimes I worry I will never be the same again after all of this I have gone through. But also for myself, because every day I am learning to trust a little more to God what is to become of me in the future with this ameloblastoma. I can't see now what is going to happen, but I just need to take it all in stride and just trust that he is going to give me the strength to deal with it all no matter what happens next and thats that. I need to take some of the burden off of my own shoulders and allow him to help me through this!

Rare Disease Day February 28, 2009

"Rare diseases are chronic, progressive, debilitating, disabling, severe and often life-threatening. Information is scarce and research is insufficient. People affected face challenges such as diagnosis delay, misdiagnosis, psychological burden and lack of practical support. Many rare disease patients are denied their right to the highest attainable standard of health and continue to advocate their need to overcome common obstacles.

The main objective of Rare Disease Day 2009 is to raise awareness with policy makers and the public of rare diseases and of their impact on patients’ lives." (quote from the website).

For more info go to:

http://www.rarediseaseday.org/

Ouch and ick

I've been tasting a little blood in my mouth off and on since last night and was getting worried, as I havent tasted any blood at all since I got home from my surgery and new bleeding is never good...well, I finally figured out where its coming from. The teeth on the left side are very sharp for some reason and are cutting at my tongue every time I talk or try to eat something. I looked on the underside of my tongue and its filled with sores and they are now bleeding. Yuck! Also my throat is so incredibly sore...my doctor said I coughed quite a bit during surgery (I was coming down with a bit of a cold before I went in) and I had a tube in my throat for breathing so it must have scraped my throat raw in there because I cant eat anything that has any texture to it at all. Incredibly hot things/incredibly cold things also have been burning my throat, so I am getting more and more limited as to what I can eat until that heals up. Its exacerbated by the fact that my cold is getting even worse so I have been coughing a lot more every day and my throat is getting sorer from that.

Other than that I am just dandy.

Recovering

Well, its been a pretty good couple of days...my lips were pretty huge for the first 2 days but today they look SO much better. One side is still a little more swollen, but it just looks like I got hit in the mouth. The pain is mostly gone, just pretty sore still, so I do take the Vicodin to sleep better at night. The underside of my tongue is not liking the teeth down there and it keeps scraping on the edges when I talk so I have bumps all along the sides of my tongue that feel like when you bite your tongue over and over again in the same spot- pretty sore- so that makes it hard to talk normally. But that's about it. I still cant really chew, so am eating soft things like mashed potatoes, mac and cheese (swallowed directly- no chewing), strained chicken noodle soup, ice cream etc. I go back in on Monday to see the prosthetics doctor and my surgeons. They put me on an antibiotic every 6 hours for the infection I had and to prevent further infection and I am praying it works and am taking it religiously. Mostly it's just very very weird to feel teeth down there, and have them feel so secure and really in there. It's really hard to explain, as its something you just kinda take for granted since most people have them down there all the time! I am still getting used to sleeping with them in there (I used to take it out before bed) so that's a little uncomfortable but other than that I hope all is on the mend. *fingers crossed!*

On the home front things arent so easy...my son had pink eye last week right before my surgery, then I had surgery Tuesday and then Wednesday my daughter came down with pink eye as well and my son came down with a bad cold and cough. My husband only got the one day off of work (Wednesday) so on Thursday I had a sick Aron all by myself, good thing my parents took Ashley for me. It has not been easy, as my body just tells me it wants to sleep and rest but alas life just does not stop going just because I have had surgery so I just have to go on and do it...today my daughter has her doctor appointnent which I have to take her to and it will be my first time driving since Monday, so I am a little anxious about it but hopefully it will be okay.

Here's a few pictures from this morning (excuse my face, I had literally just woke up):

Swelling going down:


The teeth:


Trying to smile my lopsided smile...the left side is still swollen inside pretty badly so my lip still sticks out:

out of surgery

I am in a surprising amount of pain, mostly due to the fact that the teeth are in there pressing on the swelling, my throat hurts terribly from the tube they stuck down it, and my lips are hugely swollen which is pulling them tight and they hurt pretty badly- but the surgery is done thank God. I did have an infection, which in my heart I just knew I did, but luckily it was localized and all in the little "sac" of fluid I had been noticing, and so I ended up losing one of the implants. However, my doctor put in 5 and said I can still have a stable base with 4 implants so they went ahead and did the teeth. I am on antibiotics now (and some vicodin- yippee! lol).

I found outsomething new today...they werent able to put the "regular" teeth in there...I guess those have a metal base on them for more permanency and stability but they werent able to put them on probably because of the infection and they just want to be sure all is well before attaching that final set. Soo that will be in another 6 months or so, after all of this is healed up nicely. They just converted the denture I have been wearing and attached it to the implants. I can still eat some foods that I wasnt able to eat before, yet nothing too hard yet. Kind of a bummer, as I assumed this was it. But, at least these teeth are in there and fixed nicely so I can eat again a little easier.

Here are a couple of pictures. Brace yourself, I know I look hideous...kinda like that lady that just gave birth to octuplets lol.



One Chris took of the cat sleeping with me, she has ben so loving, I think she knows I am in pain:



That's it for now, sitting up is making me feel nauseated. I'll keep you all posted.

Please no

when i changed my pillowcase this morning there was brown stuff on it that had come out of my mouth. Oh my gosh please dont let this be new infection. I have been so worried about that bubble forming in my mouth and feeling like it was possibly an infection but they told me not to be worried. Please dont let this be happening to me. I cant get a hold of anyone because its a holiday. I will just have to go in tomorrow and brace myself for the fact that my surgery probably isnt going to be happening. I dont want to lose that implant...I cant believe this, I am shaking all over. I just dont know what to do. Please dont let this be happening.

Surgery Feb 17th

So I just got a call that my next surgery is scheduled for Feb 17th...they are going to attach the teeth then. Finally- I have been waiting so long and was starting to get worried that I hadn't heard anything. I have been getting anxious because the skin in the floor of my mouth over the implant that lost its healing cap has been swelling up like a bubble, but getting a little bigger every day. When I wear my denture it flattens out again and then gets round again when I take it out. It's gross. I am worried and hope there is no infection or something underneath causing it to do that. I am so so tired of worrying and worrying...it seems I can't have a moments peace with this darn thing. Every time I think I am done being worried I find something new to be anxious about. Now I am going to be worried until then that they are going to find that one of the implants is loose or something when I go in and they cant attach the teeth.

After this is done I want to take a break off surgeries for a bit. I will probably get another night job again a few days a week to help out with the finances a bit and just take some 'me' time off. I think my body is saying it needs a break. I know mentally I do. This is draining.

Newlywed :)

Just a few. I am so wonderfully tired- and elated. Now that this is done, I am just waiting for my next surgery so I can be completely happy!







And a close up of my odd new smile...I am so happy inside but it just doesn't show. Maybe after a while I will learn how to smile again:

Missing my smile

I cant smile anymore showing my teeth. My bottom teeth sit below my lower lip now due to all the bone loss and when I try to smile, all you can see is my top teeth and my lower lip kinda goes in. It looks goofy. Also, my mouth doesnt move the way it used to when I try to smile, so it just ends up looking more like a grimace than a smile. I have tried and tried but I just cant seem to do it so it looks normal. I am sad because in my wedding pics I will be smiling but not 'really' smiling the way I used to be able to.

I miss my smile. :(

Sorry I am MIA

Things are crazy planning the wedding and our trip to Las Vegas. It will be my first time on an airplane and I am so nervous! It really doesn't help that an airplane actually went down this week in the news because of a flock of birds flying into the engines (Hello! They're BIRDS- they fly in the sky. Its what they DO, fer cryin' out loud!) So yeah, I am not feelin' too hot on air travel right now. *sigh. Then there are a few other things we are trying to wrap up. Chris got his suit today and I got shoes, which I am not too fond of. I may take them back and get others but at least I have a pair just in case. Are all dress shoes so uncomfortable?! I guess I am just not a "heels" kind of girl. My mom is sewing my dress. She is a pretty great seamstress and it only cost $30 for the fabric and pattern so hopefully it comes out the way I want. My dress is a cream color, with a wide champagne/golden colored sash around the middle. It is tea length (ie, short) and fairly casual. Its nothing too fancy, as there is just no way I wanted something like that. Even before anything happened to my face I was never cool with being around a lot of people and this is just the kind of simple, casual thing that I want for Chris and I to finally legalize our relationship together.

Hopefully I can afford a few pictures, the photographer is so expensive and I am sad none of my awesome photography gals live near LV to help us out with that part of it all but I will get at least one good one to share.

As far as surgeries go, we are at a standstill until at least this is over, so they will probably want to get in there the last week of Jan/ first week of Feb to attach the teeth. The one implant where the top came off has a little bubble on it. It has been worrying me but it doesn't look too different than the other areas on the floor of my mouth so I am trying not to worry about it. There is no pain or redness or anything and I keep my mouth very clean.

I'll keep you all posted!

Goin' to the chapel and we're

gonna get married!

That's right folks, finally! January 24th is the date. We're goin' to Las Vegas, baby! I am so excited. Not only because we're getting married but because I have never been to Vegas and I have never flown in an airplane before so it will be a lot of firsts. :)

Naturally I'm not going to be your typical "bride." This thing has made me just so shy to be seen in front of people that we are only taking one good friend with us. I was putting it off and putting it off until I felt that my face was back to normal enough or I was "pretty again" but the truth is I just want to be married to the guy I love and I may never look the way I looked before so I am sick of all the waiting. It also sucks that I dont feel pretty enough to be able to wear any kind of wedding dress or have any attention bestowed upon me but at least we are going to do it finally. We are going between just doing it there at the courthouse in Vegas when we get our license or just doing it with us 3 (our best friend is coming with us) at a small chapel, I just dont know what all I am comfortable with yet. I told my surgeons NO surgeries between the 19th and the 27th so if they dont get these teeth attached next week then its just not going to happen until the very end of January or beginning of February. It's time for some ME time and surgeries will have to wait!

Of course I will have some pictures when we get back. This is a bit of brightness and happiness in all the craziness that has been my life over the past 3 years. Only a couple weeks left- I cant wait!

All is well

Turns out it was just the healing abuttment that came off, not the implant itself. They took x-rays just to be sure and it is still firmly implanted in the bone. Thank God! I dont recall being so worried in a long time, I felt like I was going to throw up all night and morning until the doctors saw me. They decided against screwing it back in (thank God!) and are just going to let it stay off since my surgery is coming up here in the next week or so anyway. It has formed a bubble over the hole where it was screwed in already so I dont have to worry about getting infection or anything in there while I am waiting. So no pain, just got sent home and all is well. Thank you for all the good thoughts!

Worried

I've been up all night. Last night something metal fell into my cheek while I was laying on my side watching TV. I looked in my mouth and it was the very middle implant (I have 5). I dont know a lot about the implants and what they look like so I am praying it is just the healing cap and not the entire thing. I am looking at it and the thing that worries me is the screw part on the bottom. I thought the healing caps would be like the lugnuts that go onto the screw if that makes sense, so seeing that screw part on the bottom is making me very very anxious. They had told me when I had the surgery that they thought they were going to lose that implant for a while and it has been swelling up and getting a lump on it (I think I posted about that a while ago and being worried at seeing a new lump in my mouth). Now that it is out I see the lump must have been the top working its way out because the floor of my mouth is smooth there now where the implant was. I am just sick with worry because I want this to all be okay and not to have to have another implant put back in before what was supposed to be my final surgery. I am worried either way because if it wasnt the entire thing and they have to screw that top back on, the tissue down there has covered the hole back up again so either way when they try to get that thing back in there its going to be very painful. I cant stop feeling wroried about it. Please think of me and I will update when I get back, I am going to finish getting my daughter ready for school and then head to the hospital to see my doctors.

Here is a picture of it, I put it in a baggie:

"Accept yourself."

That is what was in my fortune cookie tonight at the Chinese restaurant we ate at (of course I wasnt able to eat the darn cookie, I had to give it to my daughter. *sigh. One day soon).

But really, what a perfect way to start my new year. "Accept yourself." Such a simple statement but also what I really hope 2009 brings.

I think this will be my year! Happy New Year, everyone!

Surgery cancelled

My surgeons ended up getting called in to an emergency situation and had to be in the OR...for most of the day. So of course I ended up being rescheduled. What sucks the most is I had already been at the hospital for an hour and a half waiting for my surgery before I found out. I was starving, cranky because our childcare situation hadn't quite worked out as we'd planned today and I was there alone, in serious need of some coffee and had no immediate ride home (Chris had dropped me off and was going back home to wait until my parents could pick up the kids, then was going to come back). Even bummier is that Chris took today off work, which was supposed to be his last day at his old job, and they are going to reschedule me for the first week (hopefully) of January, which is when he starts his new job so he wont be able to go with me when I do actually get to have the surgery. Gah! Today was sucky all around, so I came home and scarfed down a huge lunch and drank about 6 big cups of coffee to make up for it all, since I was having withdrawals. :)

The only good part of this is not having to worry about being swollen or uncomfortable on Christmas Eve and day, so I can enjoy it with the family. But I did want to get this over with!

Another thing I wanted to talk about is this pain I have been having in my jaw underneath my chin that has been scaring me for the past 2 days. The pain feels like a pulled tendon or something, like someone is stretching it and it happens when I open my mouth to talk or eat and can be quite painful at times, to the point where I quickly shut my mouth if I feel it (now now, no jokes about how happy my husband must be!). It has been worrying me, as I have some scar tissue down there that does look swollen all the time and I was worried something could be going on in there.

When I mentioned it to one of the doctors today though he immediately asked me: "Do you grind your teeth?" I said yes. Actually, I have always been a grinder (hee), to the point where when I was younger the doctors even mentioned I should probably wear some kind of mouth guard when I sleep because I do it so much. Lately I have been catching myself clenching my teeth so hard to the point where when I realize it and relax my jaw its sore! I never put the two together really. I think its just all the stress I am under lately. As is life, I am not just dealing with these medical issues, there is so much more going on at the same time with life and kids and such and just dealing with it all sometimes makes me feel I am going to lose my mind. I think the jaw clenching is just a manifestation of that stress and frustration. But it is nice to know that at least it could be something that is not too worrisome causing the pain in there and puts my mind at a bit more ease.

And so I have to wait again. Such is the life of dealing with ameloblastoma. Wait wait wait- then wait some more!

Surgery again

They called to schedule it for the 23rd- 5 days away. So soon, but it was either that or wait until the second week of January. They said they are going to try to permanently attach the teeth to the implants during that surgery. From what it sounds like, it wont be too hard for them to get to the implants that are re-covered (or so they think) but I am not getting my hopes up too much for fears that they might not be able to get to them so easily as they think and I may end up going home again without teeth and having to wait some more. I really hope that doesnt happen, because its Christmas and I have family things I want to go to and things I want to do that I definitely dont want to do with my lower lip caving in and lisping with no teeth! So wish me luck that all goes well, of course I will keep you all posted as usual. If this goes as planned then there will be teeth in there permanently, which is what I have ben waiting for for 3 1/2 years now.

A glimpse into the future....

My hips hurt when it rains.

I'm going to be a super cool old lady.

That is all.

Lucie from Quebec, Canada

Every time I check my aol email it seems I have emails from people who have read my blog and are keeping up with my story in some way shape or form.

Tonight I got a particularly moving email from a woman named Lucie. She did not have an ameloblastoma but she found my blog and for some reason the way she spoke to me just made me realize that what I am doing here is helping people to find someone to relate to, a way to know they are not alone in how they are feeling no matter what they are dealing with. And for me as well. I find every day that I must remind myself that I am not the only person out there who has had to deal with something that has changed their life forever. Whether it be an ameloblastoma, a person who is recently diagnosed with cancer, someone who has been in a car accident and had to have their leg amputated, or even someone who has had to have a mole on their face removed that has left scars- everyone has to deal with something medically-related in their lives that changes who they are or how they percieve their lives to be forever in some way...

We had a man recently on the yahoo ameloblastoma board who wrote that he had had a stroke as well as an ameloblastoma. He is now having a hard time writing and using one whole side of his body. But he reminded us that we are still alive to enjoy this life with our family and friends. It may not be life as we always pictured it to be, or a perfect one, but life could always be so much more difficult or horrible than what we are going through, although it is human nature to think we must be going through or have gone through the worst there is out there.

So thank you to everyone, for once again reminding me to be thankful that I am here to be with my family and friends, and also for allowing me to speak to you with this blog even if its for a very short time. Thank you for the emails letting me know that you have been keeping up with me and wanting to know how I am. Every time I get one I feel very much blessed that there are people out there who care so much about a stranger from California who is dealing with medical problems and chose one day to write about them online in the hopes that she would be able to find some kind of healing in the process.

And she has.

Thanks especially for your touching email, Lucie from Quebec, Canada!

Not much new to report

I am still waiting for the doctors to call me back to schedule the next time they are going to work on me. They are going to have to put me under but its sounding like the implants that have re-covered themselves wont be *too* much of a problem to fix. From what I understand its pretty common, and as long as you can still see some of the metal then they can get to them fairly easily still. I can see just the smallest glint of metal but I can still see them so we are hopefully still in business. Its always so nerve wracking for me to be put to sleep but if I think about the alternative- being awake while they dig around in there and try to get the implant tops off- I think I will take my chances with just being scared.

Ugh

So, I have noticed that 2 of my implants are almost all the way covered up again! I am fairly certain they are going to have to go back in and re-uncover them. Why does my body hate me so? For ages it won't heal itself or do what its supposed to, and now it's determined to go back and make up for that by over healing itself...they're supposed to be uncovered, darnit!!! I suppose this will set me back again another month or so, but who's counting at this point with the setbacks, right? I wont know until I can make it back in to see my surgeons, and that wont be until after Thanksgiving, so probably next week sometime.

As usual...I'll keep you posted. Blah.

Some attractive pictures of me

I promised pics of the healing implants inside my mouth so here they are....its just impossible to try to look atractive while you are doing this to your mouth, so bear with me.

The metal things are the healing caps on top of each exposed implant...there are 5 total but I couldnt get a picture by myself of all 5 of them. Once they are done healing, they will screw a new top on each one and those will attach to the permanent bridge of teeth.

So, here they are:





And one of me with the temporary bridge of teeth in there:

Just a picture

My 3 year old son and I at Pier 39 in San Francisco.

Where's the teeth?

Well, I sure as heck wont know...for at last a few more weeks. :(

I went in today for my post-op follow up and they said that with 4 out of 5 of my implants my soft tissue is trying to grow back over the exposed implants and healing caps. I guess after all this time of my immune system not working and healing me that it's decided that it wants to OVER heal me, so it is making excess tissue like crazy and trying to cover up what the doctors worked so hard to expose on Friday's surgery. They have to take off the healing caps in order to make an impression for the new bridge of teeth that will go over the implants, but today they discovered they cant because they cant get the healing caps off since they are half buried back in newly formed soft tissue. SO they have to put me under anesthesia they said because they cant use just novicane because of all the nerve damage in the area and they will have to dig around each implant cap to get it off and it will be extremely painful if I am awake.

The thing that sucks is my parents will be out of town starting Saturday until December 5th, so we have to wait until they get home from their trip for me to be put under and this procedure done. Chris just cannot take any more time off of work and I dont have anyone to take me to the hospital to do the procedure without one of my parents to do it. I am bummed, because Chris and I really were hoping that these teeth would be in before we get married end of December but I am just not sure if that is going to happen now.

Anyway, other than that the area looks very good they said and nicely healed from my surgery Friday, it is the fastest I ever healed from a surgery and the nicest I have ever healed without any complications, and for that I am greatful at least.

That's the latest news for now.

Appointment tomorrow

I go in for them to check the healing on my implants and to have the doctor fix my denture so it can be worn while everything is healing up. I am looking forward to being able to wear the denture again. I am not looking forward to having the stitches removed (I have a few in there around a couple of the implants). They always say it wont hurt but it does. If I am ever going to be in any sort of field of doctor work I wont ever tell a patient that removing stitches doesnt hurt. It almost always feels like crap, especially when the area has recently been operated on and is tender! You just dont want anyone touching you there for a long time, and it sucks.

As usual, I'll keep you all posted.

Top 5 reasons you'll be way cooler than other people after having had an ameloblastoma

5. People will never punk you again. Why you ask? Because you can always say “Hey man- the last guy that messed with me was ground up and his rib bones were used to make me a new jaw by my personal surgeon…any questions?”


4. You always have an opening line when you walk into a bar to get girls/guys to notice you. “Hey, my jaw is made up of bits of dead people and metal scraps…so, what’s your story?”


3. You can always protect your children at school. When they have a bully harassing them, simply drive them to school one day, find said bully, and then pull your pants down a bit and show them all your hip scars and tell them you used to be a ninja and haven’t yet lost your fighting abilities so they better back off your kid or else.


2. You’ll be the queen or king of the “one up.” For example, if anyone is complaining about how rough life is, or how they just are SO sick they feel like they’re gonna die, or some other mundane gripe, you can always say “Yeah, man, I know what you mean. After my last surgery, after they took all that bone out of my hips/removed my fibula/ [insert appropriate surgical procedure here] and there was just blood pouring everywhere and I couldn’t walk for ages without excruciating pain or eat for days….shoot man, I feel ya. Rough times.”

And the number one reason why you'll be way cooler than other people after having had an ameloblastoma:


1. Nothing surprises you anymore. For example, you could go in for a routine check up and have your oral surgeon tell you he has to glue a dog fetus to your cheek and grow it for a year and then harvest the bones from it to graft into your jaw- and it doesn’t even make you flinch.

Still no appetite

and it's wearing me out! Taking care of two children alone all day is exerting more energy than I feel I have to give. I am not taking in enough calories so I end up feverish, jittery and exhausted at the end of the day because of all the running around I am doing. It really stinks trying to force myself to eat when I just am not into it. Or I think I want something and then cant eat it when I try. Poor Chris, I begged and begged him for a slice of pumpkin pie last night, I just wanted it so bad, and of course being the wonderful guy he is, he runs to the store to buy me a slice, complete with whip cream. I took a few bites and that was it. Hopefully this will pass soon, it is almost noon and I am still in my jammies and Aron is begging to go to the park to play and climbing the walls like a typical 3 year old would do being so coooped up. Would it be too odd to go to the park in my pajamas? :P

I am feeling back to my old self again now, which is nice. Its odd because after every surgery it seems like my stomach shrinks and I just lose my appetite. The first few day are always the worst, as you are really hungry but you just cant chew anything and all your 'food' options pretty much suck, so after those days you just decide it would be better to starve than to eat another bowl of mashed potato/chicken soup/potato soup/oatmeal/scrambled egg, etc. So then by like the 4th or 5th day your stomach has just decided it is okay with not eating and I guess gives up telling you it wants food. Yesterday I had two scrambled eggs and then didnt eat again until dinnertime, then I had a few small bites of cheese enchilada and a few bites of refried beans (always swallowed directly- no chewing!). This morning I had to force myself to eat because I had a small cup of coffee and had started shaking so I made some scrambled eggs (again, blech!) and then took two bites and that was it. I am more thirsty than anything and have been drinking tons of water- I feel like a camel! It's odd because this happens after every surgery and it always takes me ages to get my appetite back.

Other than that, the blood clot over that one implant is completely gone, but it looks half embedded in the skin like the skin is trying to grow back over it, so I hope that wont be a problem when they see it on Monday. I am also pretty tired because I have to set my alarm for 12am, 6am, 12pm and 6pm to take my antibiotic and the 12am/6am wake up always sucks as I have a hard time falling back asleep. I cant wait until I am done with those antibiotics!

Post surgery update

Sorry it has been so long! I have mostly been sleeping and resting, but am back to feeling about 99% today which is the fastest I have ever recovered from a surgery before! The surgery itself went pretty well. The doctor said they had a difficult time uncovering the implants so it went a bit longer than they thought. Then, after I woke up, they sent me to do a panoramic X-ray (it gives you a 360 view of the entire jaw) and found that the cap was not on all the way on one of my implants and there was some excess bone sticking out preventing the cap from going on. So after much teasing about how "these things always happen only to you, Tina!" they had to numb me and shave that extra bit off and put the cap back on. It was a lovely experience, I'll just say that much, as I do not stay numbed for long. But then they said all was well and sent me home. I came straight home and slept, and that night had some strained potato soup and went back to bed. Then the next day I pretty much slept off and on the whole day as well.

On Saturday I noticed that each of my implants had a blood clot on top of it, so you couldnt see the metal caps anymore and I felt a bit worried but tried not to get too worried. Then I noticed the implant where they had had to go back in, the blood clot on top of that one was huge, about the size of a molar, maybe bigger. It felt all bubbly too like the skin was blowing up in that area like a balloon. I started to stress about it but when I woke today I noticed it has diminished in size, to where it is only covering the top of the implant, and all the other clots are gone! I feel so much better. I think it was just the added trauma of having to go back in and mess with that implant some more that made that clot larger. So, I think it will shrink down and come off like the others did.

The thing that really bums me out, is I thought this was IT for the implant stuff but I learned this is what they call "Stage 2" of the implant process, which is 'uncovering the implants.' They basically have to wait now for these to heal, so I cant even wear my bottom denture. I was really upset when I heard that, as I have a huge fear of my lip caving in again, though I remind myself that happened after a year and a half of no teeth in there, not one week, but still the fear is there. Plus I feel so embarassed being out and about and when I talk I lisp again, because I have been so used to teeth being in there for the past month or two. So I probably will stay home a lot this week and veg out here, though I do go out for things I have to go out for. Its so easy to forget what you have been through when things start to improve, isnt it? Oh and as far as meds go, I am taking my penicillin regularly (every 6 hours) but I haven't needed my codeine since the second day. Yay!

Anyway, I see the prosthetic dentist next Monday, and he is going to shave the bottom of my denture so I can wear it again over the healing implant studs. I believe the next step is they just screw a different top onto each implant and it attaches to the teeth, so really the next step will be the final one. I dont even think that involves a surgery either, so hopefully I will be done with surgeries for at least a while after this. I havent been in the mood for any picture taking, but will try to take one later on, all you can really see is the metal balls of the heads they screwed on to the tops of each implant.

I'll keep you all posted...thank you for the prayers and good wishes!

Surgery tomorrow

I wasnt too nervous until they called from the hospital to confirm my 'oral surgery appointment.' *Sigh. I dont know why but I have just been trying not to think about it. We actually have to be at the hospital by 6:45 am, which is soooooo early, but hopefully it will get me in quickly and done even faster. They said it should only take a few hours.

Tonight we're going to dinner at my favorite Japanese restaurant, and then nothing to eat or drink for me after midnight.

I'll update you all when I can, wish me luck that all goes well.

Only 4 days to go

and I am a nervous wreck. I feel sick thinking about it, worrying something might go wrong. I just want Friday to get here and be done with already.

Sorry its been so long

Just waiting for my surgery, it is in 6 days and I feel so anxious about it all. Usually the week before a surgery I get sick to my stomach, my anxiety is back in full force and I am really worried and tense. To make matters worse, Chris is leaving unexpectedly for a trip for his work for the next 4 days so I will be here at home dealing with my stress all alone. I am not looking forward to it.

I am sure most will think after so many surgeries, surely it gets easier? But really, I have developed such an unnatural fear of the doctors and surgery. Its like my mind associates surgery with pain and complications so I just get so worked up about it all, even something small(er) like this procedure. As soon as its time for that IV line I just break down and start to shake and cry, and the nights before I go in I worry about going under and never waking up again. I have mentioned before I am a bit of a control freak, and going under anesthesia, even for a short time, is totally letting go of any control and giving yourself up to someone else entirely and that is just so frightening for me. I know this is a tiny beans surgery compared to what I have already been through (13+ hours, anyone?) but it is still no less nerve wracking.

As usual in the days before and after my surgery there will be more blog posts and pictures. I know many on my ameloblastoma board are wondering what the implant process is like so I will definitely keep you all posted as to the procedure and the healing and how it all goes. Hopefully smoothly this time, as I have been out of the woods far to long to go backwards now. Wish me luck!

Implant surgery scheduled!

Or I should say, they are attaching the teeth to the implants I already have, on Nov 3rd- only a couple of weeks left! This is one of the final stages of my reconstructive phase and I cant wait. I am trying not to get too excited because I dont want to jinx myself. I am trying to prepare myself for the "actually, we have to do one more thing before we can do this" speech that I may get, and that is hard because I just want to be excited, we have been waiting SO long for this. It has been over 3 years now and I just want to get there already!

I do still have a couple of small cosmetic procedures left to do but this is the big one we have been waiting for. Of course I will keep you updated with pictures and the steps of the procedure for those wondering how it all works. They told me they want to try to do it without putting me under, it's supposed to be a fairly easy procedure but I do freak out easily, so just in case I am not to eat or drink anything after midnight the night before. Please keep me in your thoughts that we may finally be reaching the end of all of this.

Keloids and worries

SO I am fairly certain that where they did the vestibuloplasty on the floor of my mouth is 'keloiding' up all over the place. Remember that spot in the front where the metal was exposed? Well it looks like it is "bubbling up" (the only way I can describe it) like the soft tissue is healing all lumpy and it is starting to grow upwards instead of over the metal parts like the doctor said he thought it would. It has been more noticeable lately like much more lumped up, to the point where I was worrying that the amelo could be returning. But when I mentioned it to my doctor last time I was there he said it was just the way the tissue was healing. I remember when I got my ear cartilegde pierced and then took it out, I got a huge keloid and my doctor said some people are just more prone to keloids than others. Well I think that is what is happening here but I am still worried. I am concerned because I am not sure if my denture will fit much longer if it keep growing upwards the way it is for one. And for two, I am concered that they are going to want to operate on that area somehow before they can do the implants because of the way it is growing upwards all bumpy and huge like that. It is a lot more noticeable this past week than it was before when I was last there. I know the chances of the amelo returning are slim and its just a keloid but it never stops nagging me these days.

That lead me to think about the future, I mean I cannot rely on my doctors for reassurance for the rest of my life but the truth is every time there is one little thing I notice it puts me on edge for days at a time. I usually dont feel better about it all until I see my doctor and tell him how I am feeling and he reassures me. After these last surgeries are over how am I ever going to get on with my life and feel like I can live again without waiting to go to my next doctor appointment and talking about this damn thing and what will happen next. I refuse to let it take over my life and yet somehow I wonder how it CAN'T, and how I can go on without my doctors help and them reassuring me every week of my life? Tonight I am just feeling down about the whole thing.

Yay :)

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.

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!

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!

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

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.

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!

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

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).

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.

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.

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.

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...

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.

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.

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. :(


My face (I thought the slight double chin showed- it shows more in the larger picture):


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. ;)

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!!

Here is a picture today after they took everything out, this is with the bumper
in of course- I do not want to take a picture of what it looks like without it in.
Oh and please excuse the hideously shiny face and teenage acne, my face has just completely
freaked out these past couple of weeks from all the stress.

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.

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?!

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:

Another update..tired of me yet? :)

I forgot to mention what happened to me when I was going into surgery. Chris had to come in as usual because they were having trouble starting my IV. I guess my veins curve funny so it starts to go in and then stops because they cannot feed it all the way into the vein to keep it in there.

So after the first try I was crying and shaking a lot (I'm a wuss about IV's) so they went and got Chris for me. Of course as soon as he comes in he starts chatting it up with the nice nurse (the one who I see every time I go into surgery and always remembers me, she calls me her 'baby') who was starting my IV and then the anesthesiologist who walked in while they were doing it. We got on the topic of our children and then the anesthesiologist mentioned STAR testing was starting this week and I said I know, our 8 year old is getting ready for it as well. He asked us where we live and we said Castro Valley. Turns out he has a 9 year old at the same school and also lives in Castro Valley! Isn't that crazy? It really is a small world. It's the weirdest thing but the last thing I remembr is him telling me he was going to have his wife 'call us up for a playdate because Chris and I seem like fun' and that he 'wouldnt let anything happen to me because now we knew where he lived and we could hunt him down if anything did'- ha ha ha! Then I went to sleep.

Anyway...I am not doing so well today at all. Pain wise anyway. The swelling is going down further and my doctor said that is why the wires are pushing into my cheek like that. They dont want to try bending it or shaving it or anything because it is wired to the floor of my mouth and if it snapped that would be it. The wax is also a no no because of all the skin grafting they did in there, if a piece got loose and worked its way in there it would start scraping off needed skin graft that we just cant have. So he said I have to try to deal with it as long as I can. Of course he said if it gets unbearable they can remove it...but after all I have been through to get to this point I'll be damned if I tell them to take it out early. I am just going to have to suffer though it. Its hard to sleep at night, the only way now is to lay on my right side with my head propped up on a pillow and my mouth and jaw kind of 'hanging' down so it releases my cheek on that side and lets it hang down. It kinda takes the pressure off, enough to fall asleep anyway. If I lay on my left no WAY it hurts so bad because it pulls my cheek tight on that side. But the good thing is they changed my leg bandage so it looks better and walking is now fairly easy, my leg is healing quickly. They did put the Tagaderm back on because it is not quite ready to be exposed yet, but they put a bandage dipped in this smelly orange stuff on it first and then covered it, it is supposed to help with infection and speed up healing. Also everything looks good inside despite the pain. So that is good news at least.

I am taking my vicodin regularly still which is worrisome to me, as the last thing I need is to come out of this as a pain pill junkie. But I tried extra strength Tylenol and it didnt do squat. Really the vicodin only 'helps' and doesnt get rid of that stupid pain either, just takes the sharp edge of it off enough to function. My poor inside of my cheek is covered in bumps like when you bite in the same spot over and over again. As the swelling goes down I can only assume it will get worse, I keep hoping my cheek will build up some kind of callous against it but so far that hasnt happened. The doctors said to try not to talk so I am trying as much as I can, and eating is almost non existent though I do try to drink broth and Ensures to get some calories and nutrition in me but the pain makes me not hungry these days and those Ensures are darn expensive.

I am trying to remain positive, as I like the shape of my new 'face' now and am starting to feel confident again. Underneath is weird and still swollen in 2 places so it looks funny but all we can do is hope it goes down over time. I know it could always be fixed later and it wouldnt be too noticeable with my hair down so I am still really happy. Now if this pain would just go away I would feel so much better.

All is well- and a before and after

The pain that was so horrible I am fairly certain is part of the expander they have in my mouth that is cutting into the soft tissue of my cheek. I am going to ask tomorrow when I go in if anything can be done, as the pain is pretty bad and it is the only thing that is still really hurting.

Here is a before and after- I think it is healing very nicely!!

I am scared

I am going back to the hospital today for increased pain on the right side of my face. Please pray this isnt another infection. I have been taking my antibiotics religiously so I dont understand if it is how I got one. I am so scared because I do not want another surgery right now and I think of all that happened last time I had an infection and I dont think I have the energy to go through it all again.

Going nuts

I am so freaking hungry. I swear if it didnt sound so diva-ish I'd think I was dying of hunger- the last solid meal I had was Tuesday night at dinner. Really. I can only open my mouth like 1/2 an inch or so, can barely get in a spoon, I am sick of sipping on broth out of a mug, I try to eat ice cream but it just fills my mouth with this mucousy stuff from the milk and I am not able to brush my top teeth to get it off so I constantly have phlegm, I cannot chew anything...I feel like I am going crazy!!! If I try to open my mouth a bit wider to put some food in on a spoon that I can swallow directly my mouth starts to bleed and I get worried so I stop. I feel so weak, I mean how can I heal if I cant eat!?

The other thing is the bleeding/leaking from my leg. I cant walk around more than a few minutes before it starts in again so my trips up are limited to peeing which is about twice a day since I am barely taking anything in anyway. I feel so pent up and exhausted of sitting in one place. Worst of all, I have my 2 year old by myself tomorrow because I have no help (Chris' mom HAS to work, she already took this whole week off, and Chris has to work too) and I dont know how I am going to do it when I am still in pain and so unable to move around.

I am really getting frustrated with this whole thing. And it is absolutely killing me that I cannot clean this place. ARGGHHH!!!! Chris is trying his hardest and has been so wonderful but really the floor really needs to be vaccummed, the bathroom really needs a cleaning and I cant do it. I tried doing the dishes when Chris was out at the park with Aron and almost fainted from standing for more than 5 minutes at a time. I think this is the most incapacitated I have ever felt with any of my surgeries and I dont know when it will end.

Pain

The third day is almost always the worst. It is almost 3 pm and I am just now getting to where I feel I can sit up and not be just overly exhausted and crying and in pain. My face has swollen worse overnight but I think the pain in my leg is even worse than my face right now. I dont know why it hurts so badly but it does. It feels like a deep burn that wont go away. It is uncomfortable because no matter how I lay it bleeds out the side of the stuff they put over it (looks like seran wrap but has a medical name, I think its Tagaderm?).

I had an appointment this morning and my mom ended up taking me. They said it all looks normal, the amount of bleeding is due to the fact that I am borderline anemic and the large area of skin they took off. They peeled the Tagaderm off and also the gauze they had laid under it to soak up the blood after the surgery, it was so painful I started to scream and my mom started to cry I think from seeing me in so much pain it must have been hard for her. It was dried on in some places and when they pulled it just hurt so badly. They say it will heal fairly quickly, and I am looking forward to that as it causes me the most pain so far (even though my mouth is pretty painful).

Here is a pretty picture from after they changed my leg bandage this morning, they put just the Tagaderm over it and no bandaging under it because after the second day the bandaging really starts to stick and it hurts too much to take off, they say it shouldn't stick to the wound itself:



Nasty huh? After all the crying and numbing they did for me I felt I could chance a look at it and its really not as bad as I expected. It does really look like they took a cheese slicer and just took off an exact rectangle of my skin. They say it wont scar and I can see it now too, it looks like where Ashley fell and scraped the top layers of skin off her elbow.

My biggest issue right now is with my lips chapping and my not eating (I have only sipped on some broth since Wednesday). My lips are so chapped they are swollen and huge and almost stuck together, I have been putting chap stick on them non stop but it doesnt help. I think I am probably partially dehydrated as it is too difficult to get things in my mouth, even a glass of water. Hopefully tomorrow will start the upswing of healing, I just dont remember it being this bad. I really thought this would be a fairly easy surgery but it has turned out to be one of the worst by far as far as pain and healing goes. I'm taking my antibiotics and vicodin on a timely basis (12 pm, 6 pm, 12 am and 6 am for the antibiotics and every 4 hours or so for vicodin though I have been able to go a bit longer today without it).

I'll keep you all updated on my progress, please keep the good thoughts coming as I very much need them.

Update

Things got off to a rocky start yesterday when we got there they said that the insurance hadnt approved the surgery yet, turns out they had changed the way that doctors have to submit approvals and didnt bother to tell the doctors so we sat there for an hour and a half before they even took me back. Then it turned out they decided to do the implants at the same time (the studs of the implants, not the teeth yet). So it ended up being a much bigger surgery than we had planned. They deciced not to take the skin from the roof of my mouth so ended up taking a huge amount from my leg, basically the entire top of my right thigh was skinned.

I woke up at 3:30 am bleeding profusely all over the place, and I started to freak out because blood was coming out of my mouth too. I thought I was going to die, they hadnt told me it could get that bad (its rare but happens). So we get to the ER, they gave me a shot of something to calm me down and a shot of morphine because I hadnt been able to take any of my pain pills since they sent us home with pills yesterday instead of liquids. They told me I just have to deal with the bleeding. It is awful and every time I go to the bathroom blood comes pouring down my leg. We are just keeping it wrapped and lots of towels to clean up the mess whenever I have to walk. The skin graft hurts worse than my mouth right now even though that is starting to hurt worse today with all the swelling from the past few hours.

I just want to thank you all for the good thoughts and prayers. I am still in so much pain and scared, the skin graft feels like horrible burning all the time and with my face getting pulled tight from swelling my mouth is starting to hurt, plus all my meds now are liquid and make me almost vomit to take them so I wait until I have to it all just sucks. I go back in tomorrow morning first thing to have my graft looked at, they took an x ray this morning and it all looks good inside my mouth. They had to stick some metal up under my chin on 3 sides to wire the whole thing into place so I wondered why I woke up with 3 holes under my chin, so it is making my swelling look weird underneath. I think it will have a good result though when its all done.

This is me the night before, you can see how pulled in my lip is:



Last night when we got home (that red line is where my skin was pulled inwards under my mouth, it will go away):



My leg yesterday (its starting to swell):



My icky face today (see how swollen underneath is now, its all lopsided because of the metal wires underneath on 3 sides):



And my leg, I can only show you the top part but the entire bandages underneath are soaked through with blood and we just keep putting wraps over wraps, its horrible. I tried to spare you my underwear and crotch shot, lol:

Getting ready

So I have been gathering things getting ready for this surgery. So far I have a new puzzle to do (its pretty intensive, about 1000 pieces), some new movies to watch- I got the first two Harry Potter movies yesterday, I have been buying them out of order- as well as am renting the first couple of DVDs of this series called The Tudors which I have been watching, and have a couple of new books as well. Chris almost bought me the new Stephen King book yesterday but really it is like $30 since it is a hardback and I just felt too guilty spending so much on a book even though secretly I still really want it (I am a huge SK fan). I may check around for it on Ebay later this week if I find I am still bored with all the resting I have to do. I am not sure about the puzzle, I have never done one before on my own but I thought it may be a good idea to kinda break up the monotony.

I am so curious as to how my healing will be with this surgery. It is outpatient so it cant be as bad as the others (I hope) but I am inevitably a sweller anyway so I know there will be lots of swelling. I am still really worried about infection but all I can do is follow instructions to a T and sit back and hope this time will be different. The not being able to eat except for liquids is always hard on me too. There is only so much you can blend up before you want to slam your head into the wall repeatedly until you black out and forget about being hungry. So much for the weight I gained back after this last surgery (I dropped down to about 113/114 and am now back up to 120 but that wont last long).

I am going to enjoy my day today and tomorrow. Last night Chris and I went out, it was our 6 year anniversary. We enjoyed a nice Japanese dinner and then went and had dessert, I had this heavenly triple chocolate cake but then when we got home I was so tired I went to bed right away. I have been tired a lot lately, it is the stress I know. Today I am going to lunch with my mom and then tomorrow lunch with Chris' mom and to finish up some last minute Spring shopping for the kids so it doesnt nag at me. I have to be at the hospital at 8 am on Wednesday so we will leave here at 7:15 to drop Aron off at Chris' moms, plus we have to check in to a new part of the hopsital this time and I need time to find it and not be late.

Of course I will update with pictures and everything. Today or tomorrow I am going to post some before pics. I need to remind myself that it wont look better instantly as the lip has been pulled in for almost 2 years now so it will take some time to release but it will be an improvement anyway.

I had a dream I woke up with a huge 'super chin' and it was quite a nightmare. I suppose if that happens I can always go buy a cape.

"Hi, I'm 26 with the memory of a 96 year old"

I'm fairly certain that when they removed my ameloblastoma they must have removed part of my memory too because ever since these surgeries started I have not been able to remember a darn thing.

Today I almost missed my pre-op appointment.

It wasnt for lack of knowing that it was today, or the fact that I didnt write it on the calendar. I did. I knew. I even went and got gas last night on the way home from dinner so I would have gas "For going to the hospital tomorow." I said this out loud, to Chris, and even pondered how long I would be there.

But when I woke up this morning all thoughts of having a doctor appointment fell out of my head when I climbed out of bed. I had a lazy morning, got my daughter off to school on time, came home, sat at the computer, milled about with a cup of coffee and thought "ahhhh...is nice not to have anywhere to be." As I was walking across the kitchen at 10:01 am, I glanced at the clock and thought hmm why do I feel so unsettled? I walked into the bathroom to wash my face and as I looked at my face in the mirror it hit me that I was supposed to be at the hospital 20 minutes away about 1/2 an hour ago for my pre-op appointment. Argh!!!!

So I rushed around and left my house in complete dissaray (I wont pretend like I didnt think about it the entire time I was waiting at the hospital) and drove like a bat out of hell to get there, and made it there in a decent span of time I might add. I did the usual wait and talk to the anesthesiologist, answer all the routine questions and was surprised to hear the anesthesiologist didn't feel he needed them to draw any blood this time, which was new but not really a sad thing for me since that would have meant being there another hour and a half or so, as well as getting stuck with a needle.

I found out I have to be at the hospital at 8 am on Wednesday instead of the usual 6 am which will be nice. They did give me this weird stuff called Hibiclens to bathe in the night before and the morning of surgery, it feels morbid to think that I have to 'cleanse' my body with it before surgery like I am prepping my body for the morgue or something. Ugh.

Anyway that is it for now, hopefully I will retain some sanity between now and then.

Surgery is on Wednesday

Wow, that was fast. I dont know that I have enough time to get everything in order before it is here.

Please send good thoughts my way. I always get kinda crazy before a surgery.

More good news, and a new surgery

So today's appointment went very very well. The doctors say the tissue and bone graft is ready (yay!), so they did the impressions for the denture that will go in after the surgery. It is not very easy, since that whole area in front is sunken in, and it took a few tries. They have to stick a plate in there that is filled with this gluey-type substance that hardens into the impression, and my mouth has sunken in so far that it is very tight and hard to open up very far. My bottom lip ended up cracking and splitting from trying to get it in- it gets extremely dry these days and with all that stretching it just couldnt take it, so I had to get it to stop bleeding which was a bit nerve wracking. But in the end they think they got a good enough impression to make a good denture.

So I am looking at surgery here in the next few weeks sometime! Already. It always feel like this happens, where I think I have lots of time and then it is here all of a sudden, I suppose that's good in terms of me being anxious and nervous but not so good too because it is coming up so fast and I still have to make arrangments for help with my kids, and some help for myself. This surgery will be them going in and 'releasing' my lip that is pulled so far in because of scarring, they will have to do skin grafts over it all once they go in and open it up again as well but it will be out patient surgery- though none the less painful for it I am sure (although it will be all done inside of the mouth so no more outside scars- that is good).

Unfortunately they do not think I have enough tissue in the roof of my mouth to only take it from there, so I will have to have it taken from two places- the roof of my mouth as well as one of my buttocks (I love that word, shame I dont get to use it too often). That isnt good because of course it means two skin graft spots to heal from but I am really worried about the roof of the mouth because they basically will peel away that whole top layer, leaving all of the bone exposed and it sounds like it is going to be incredibly painful to heal from. I also worry about healing time, as the mouth harbors so many germs and bacteria already. But they say the roof of the mouth is the best way to go, because it is exremely tough and is well vascularized so it is good for the skin graft, or they'd probably just do it all from the buttock (hee hee) to minimize some of the discomfort. All I can do is trust them again and hope that this surgery goes more smoothly than the last. Really I am starting to love all my doctors and think of them as a bit of a family seeing as how its been 3 years now we've known each other.

I'll update when I know more, they are supposed to call me with a surgery date and then there is also all of that fun pre-op stuff that needs to be scheduled as well.

Great update

Today's x-rays showed that I am not only making bone, its good bone AND it is already hardened in so many places! The only set back was there is one section in the very middle that hasnt 'turned over' yet, meaning it is not yet matured BUT typical bone grafts take anywhere from 6-9 mos to mature and it has only been just now 6 months anyway so the dr said we are right on track, if not a bit ahead of schedule because of how much bone has already hardened and set. He said that at this point we have enough bone already to do the implants anyway even if I dont make much more, as long as nothing new opens up or goes soft again.

So we are looking at this timeline (if all goes as planned):

*Next month: seeing the ortho who is going to take impressions and make me a denture for the bottom of my mouth, possibly a new CT scan taken

*1 1/2-2 mos from now: Having the surgery where they are going to go in and release my lip...this involves some pretty painful skin grafts as well but I really dont care after everything I have been through its just one more thing I am ready to do, plus its all on the inside of my mouth so no more external cuts to heal from thank god. Then they'll place the denture in my mouth to keep my lip from sinking in again, until they do the implants.
*3- 3 1/2 mos from now: Implants!!!!!!! Yay, food again!

I am just so excited I dont know what to do with myself. I was so anxious waiting for them to get the results...shaking, jittery because I am so used to hearing "we have bad news" or "there is a problem." Plus from here on out its all outpatient surgeries which are so minor compared to the long marathon ones I am used to.

Keep the good thoughts coming everyone!!

A few pictures from Disneyland!

Just pictures for now, until I can blog about it. We had a great time!

Had a bad anxiety attack yesterday

I wanted to share even though this post may make me sound totally crazy LOL. Yesterday after I got out of the shower I had one of those bad anxiety attacks...the kind that makes me wish I hadnt thrown my Xanax away and made-me-wonder-if-I-needed-to-call-an-ambulance-because-I-was-possibly-
having-a-heart-attack kind of anxiety attack. I haven't had one like that in a long time and it really scared me. The weird thing is I knew where it was stemming from but still my mind couldn't control what was happening to my body.

Warning: nasty TMI coming up here.

So remember back when I had that bad infection that we didnt know I had after my surgery in September? That day started like any other, I was in a lot of pain so I decided to take a shower and take a Vicodin because that had always alleviated the pain somewhat....so I took a nice hot shower and then put on some comfortable sweat pants and a t shirt. I laid down on the bed to wait for the Vicodin to set in. I was on my right side and I remember just feeling too much pain in my face laying on that side so I rolled over to my left, propped my head up on my hand and started flipping through channels. Thats when I felt some kind of weird slickness on my arm...I thought oh man Tina- now you really ARE disgusting, you have drooled so much you have soaked through the sleeve of your shirt! Feeling totally grossed out with myself I reached up to wipe what I could only imagine as drool off my mouth and for some weird reason my mouth was completely dry. So I sit up and look at my arm and it is covered in this wetness, I cant figure out where in the world it is coming from, never thinking to check my neck incision.

Well as I am walking to the bathroom I put my hand up to my neck and it is covered in this wet slickness as well...I look in the mirror and there is this grayish looking stuff just kind of pouring out of my neck and running down my side. I freaked out and started shaking.....I grabbed the phone and called the hospital and they paged my surgeon. They told me to come in right away so I called and my dad came to get me. On the way to the hospital I was holding a towel to my neck and I remember looking down and having the weirdest thought- it looked like coffee with creamer in it (the color) so thinking maybe there was a weird leak somehow and the coffee I had recently drank was coming out of my neck. It was a silly thought in hindsight but it reassured me that there wasnt too much wrong and we'd all have a good laugh when I got there. Well when I got to the hospital my surgeon was waiting for me. I will never forget the look on his face when he looked at my neck and told me I was a very sick young lady. My life changed from that minute on. He told my father to go home and to call Chris because I was being admitted to the hospital. They started an IV line on me and that was that.

That week was one of the worst weeks of my life. If it isnt bad enough worrying that you are going to die from a serious infection that seems to be resistant to whatever they are trying on it in the lab (before they discovered what had caused it), waiting in a sterile hospital room with very sick people all day long, not being able to see your children or shower, being poked with needles all hours of the day and night and then finding out they have to cut your neck open again is 1000x's worse. Dont get me started on the green jello and beef broth they gave me for breakfast, lunch and dinner. And I can tell you another thing- ground up suasage is SO not the same as regular sausage. *puke

I tell that story because ever since then if something drips on me I completely freak out and grab my neck. So yesterday's episode when I got out of the shower was weird because usually once I figure out where the wetness is coming from (I hadnt dried off well enough and some water was running from my hair along the side of my neck) I can relax and kind of laugh at myself but yesterday it just escalated into a full on anxiety attack (shortness of breath, arm pains, crying, shaking etc). It pretty much wore me out. I wonder if I do need something to help me out...lately I have been so cranky and irritable and prone to just freaking out like this. This is so not me and really it is taking its toll on me. I hate that this tumor and these surgeries will haunt me for god knows how long. And really its only because I let it, but how can I stop it? Its always on my mind. I cant remember the last time I wasnt thinking about something related to the tumor or surgeries. I'm too young for this crap!

In the past 2 weeks I have met people who have contacted me from reading my blog. It breaks my heart that there are yet others who will have to deal with this. Its hard to counsel and support when I still need so much of it myself but I do it because I dont want anyone else to feel as alone as I was in the beginning.

Well, the good news is we leave for Disneyland in 3 days so maybe all I need is a vacation!

Keep on keepin' on...

Well we are still in a waiting period so there hasn't been much to post about...I guess with my history less posting=better news huh? I find I go in cycles where when I am going through a rough patch I blog almost every day, its one of the ways I get by I guess. I saw my doctor last week...they put me on a muscle relaxer because of the migraines I have been getting as well as hearing this odd stretching type sound when I chew. It makes it so I don't want to eat, because it is reminiscent of something that is about to snap, if that makes sense. The headaches are from me straining to keep my mouth shut, especially when we are out and about. Its tough because I find I want to go out less because it is more strain to try to arrange my face in lines that appear as 'normal' as I can, but the less I get out the more depressed I get. So I just suffer though the headaches best I can. It really is getting hard to chew and keep my mouth shut because the scarring is pulling my lip so far in.

Other than that they said they are going to do an in-depth CT scan the end of March...March 20th to be exact. They are going to see the "quality" of bone I have made as well as do pre-op for my next surgery which should be about April sometime. I am looking forward to that surgery the most because it will release some of the tension in my face from my lip being pulled in the way it is and should give me some relief. But I am so nervous that they are either going to find something else wrong then or see that my body isnt making bone (which is always what has happened in the past). I know I will be a bit of a wreck until then so it cant really come soon enough.

I have gained a couple of pounds back as well which is nice.

Oh and we are heading to Disneyland next week! I am so so excited, as it will be both kids' first times...it will be a bit of a nice break as well with the family.

Anway, as of today I am 168 days post op (from September 11th) from the last bone graft. Here are some more pictures.



And my hip scars:

Just a couple of pictures

The swelling is coming along nicely. It's still swollen underneath though. The doctor says its an inflammation of the muscle as well, because of the number of times my throat has been cut there. It could take ages to go down all the way. But I do see a big difference. I will update more tomorrow.

Finally

It seems I have finally kicked that sinus infection I had in the butt. I just took my last pill this morning (yay, no more having to choke them down twice a day), so hopefully the bugger doesnt come back in a day or two. Its kinda nice to be able to breathe and go more than 5 minutes without having to blow my nose. I still cough some at night, especially if I go out in the cold air but its nothing like it was before.

I dont go back to see the doctor until February 11th, which is both relieving and nerve wracking. I cant help but be worried that something is going to happen between now and then. My general doctor prescribed me Xanax for the anxiety attacks I have been suffering from lately (all over again), but I cannot take them. I took one two times and it knocked me out cold both times plus made me really moody. I want something that can prevent them from coming on, not something that I take when I feel one starting. It seems by the time it is here the Xanax takes a while to kick in so I have to suffer through the first 10 minutes or so alone. I have small children to care for, I cant be a zombie all day long but I cant keep going on like this much longer. Every little thing makes me paranoid these days. On Saturday we took the kids out for the day and for some random reason on the way home I glanced in the mirror in the car and it *seemed* like my chin was bigger. Chris agrees it looks a bit lopsided but he thinks its the way its healing. I know that is most likely it but I was told that the last time and it wasnt the way it was healing- it was more infection. So I stared at my face all day, felt sick to my stomach and didnt talk much until later that night when I looked and decided it looked 'normal' again. Its really a rough time all around for my emotions these days and I'm tired all the time. I just dont know what I will do if I end up with another infection, I have been strong up until now but there are days (like today) where I wonder if I have anything left to give should more things go wrong.

The other issue I am dealing with is extreme lack of appetite. This has been a problem really since I got out of the hospital at the end of September but its really getting out of control. I have absolutely zero appetite most days. I literally have to force myself to eat something, anything- a banana, some applesauce, bread etc because it will be one or two in the afternoon before I realize I havent eaten, and I never really feel hunger until I am eating, and even then after a couple of bites I am done. This is alarming only because I weigh about 115 right now and do not want to get any smaller. I worry about the state of my graft if I'm not eating right but imagine if you had just eaten a huge meal and then sat down and tried to eat again 5 minutes later. It feels like that when I eat, I am always forcing myself or just eating out of neccessity like a robot. I am continuing to take my vitamins though so hopefully that helps somewhat. I may have to go back to drinking Ensures like a little old lady, which are disgusting but may be neccessary for my health.

So that is what's going on with me lately. Hopefully things stay on a positive note. Thanks to everyone for the continued good thoughts and prayers coming my way. I appreciate them more than words can say.

Pretty good news

At my doctor appointment last week we found out the bone graft is alive and making bone. They took a panoramic of my face again and the difference between last time and this was amazing, you can see where it is filling itself in. It still has so far to go but its worth the wait (probably another 6 mos of waiting or so maybe more). By this time last time we knew things were going to turn out badly b/c there was barely any bone in the xrays and they couldnt tell if it was 'alive' or not b/c there was no filling in happening. Dr Indresano said it wouldnt be filling in like it is if it wasnt alive and well. I am trying not to get my hopes up but its hard after so many surgeries, maybe this will be the one that sticks. On a bad note, my hip is still fractured and aches alot so I have to be careful but that is fine with me, its the jaw I am worried about. Just wanted to do a quick update.

Still alive

I just wanted everyone to know I am still alive. I have just been sick sick sick. Allllll winter. I go a few days between then start all over again. Its rather exhausting, and, as a result, many things end up not getting done...including updates here. I am down to seeing my doctor every other week now which is good and so far no new infections. I'll update again when I know more and when I am feeling a bit better.

Update on swelling

Its going down...ever so slowly.

This is my son and I last night:

Ugh I am getting sick again! I just got over a bad cold that started with fever and chills and then worked its way into major congestion, then all of a sudden it was gone. Then my son came down sick and now he has a majorly croupy sounding cough which I hope doesnt get any worse...Ashley has a cough but its not too bad...and Chris came down sick as well but he seems to be getting over it. Then when I woke up this morning I have this horrible cough and my chest feels all heavy...when I talk too much I lose my voice. *Sigh. I never get sick (none of us do, actually- we're a pretty healthy family normally), so all of this sickness is starting to drive me crazy. I have so much to get done before the weekend is over. My daughter's birthday party is Saturday and I have a lot of holiday things to do as well as personal things, like dentist appointments for both kids and things like that, as well as get my Christmas cards out so they get to people before the first of the year.

I feel so anxious about being sick again, mostly because I just stopped my antibiotic yesterday and I cant help but feel worried about the fact that I am sick again after only a few days of reprieve. I just hope its not the sign of bad things to come.

Update

Sorry I havent posted lately, I've just been so busy- its that time of year! Anyway, I had a doctor appointment this morning. All looks well. I stopped my Augmentin yesterday (oral antibiotic) so I guess we will wait and see what happens. I know my doctor had mentioned he is nervous since I was only off the Zosyn for 4 days when I got that new infection last time so I guess we will see. I am nervous every minute of every day but am trying to just go on. I have dreams that I wake up and there is stuff coming out of my neck all the time too and it makes me restless at night.

My swelling looks a bit the same, the underside where the original infection was looks the same, but that could take a long time to go down because of all the infections. My biggest challenge these days is my appetite. I dont feel hungry, I could go ages without eating. Today it was 1:30 pm when I looked down and realized my hands were shaking because I had had a cup of coffee this morning and no food all day. Then, when I started to eat I was ravenous. I dont know why I am going so long without wanting to eat. Its frusrating, as I know I need to be eating at regular intervals but half the time I am just not hungry at all, and the other half of the time my body isnt telling me its hungry when it is, in fact, starving.

Another new issue is I have gotten so used to being sick that I just cannot think of myself as healthy anymore. Every little thing is cause for alarm. Its enough to drive anyone crazy. Today the doctor said he didnt need to see me next week, but could see me the week after- I asked for an appointment anyway. Its not that I want to go- I hate going every week- its just that I feel like if I make an appointment for 2 weeks away I will jinx myself and something bad will happen to me and I'll end up going anyway. Such is my life, I guess.

So other than that I am trying to take it day by day, and am still choking down those nasty vitamins every night. At this point I will just take not having any new infections, and that is what I am trying to focus on- staying healthy. Anything else good would just be a bonus.

Oh and here is a quick picture of me today (dont mind the shiny forehead- I dont wear makeup):

Not bad news...

So it appears the pus that was in my neck last time and this past time was not bacterial, that is, not another infection- thank God. I discovered for the first time today that pus doesn't neccessarily mean infection- I always thought it did (and it would have saved me a TON of worries and stress if I would have known that before as well, grrr). They said its just mixed in with 'normal' secretions from the neck, I guess I have an overabundance of fluids and it just created a little sac to build up in. So now we are back to just regular wound care, poor Chris gets the brunt of it. Clean the area with the bacitracin (sp?), then flush the wound with saline and pat dry, then pack it with the silver nitrate and bandage it all up again until it heals. Its tedious and annoying but I'd rather have that than another unknown infection any day.

So that was the bit of good news I got at this morning's appointment. I am still extremely wary. Its sad when good news just isnt 'good' to me anymore, because it seems it is ever changing, and tomorrow (or even tonight) could bring about a whole new host of problems which could put me in the hospital. I find its worse on me to get up and up and then the fall seems so much greater when something new bad happens, so I am trying not to feel anything. I am very drained emotionally these days. Yesterday I had crying jags off and on, similar to right after I had my son. It is very tiring to feel so much at once and I find that I dont have much energy at all, yet I sitll have to force myself to rest as my mind continues to go at about 110 mph. I just wish my body could keep up.

They did not do the testing today. They have to make all kinds of arrangments for it as well as try to get my insurance to cover it, and I am not even sure if it will be done at the same hospital (or even if they will even do it if I start to heal finally, who knows). I'll keep you updated on that situation as well.

One day at a time.

More issues

Well, what I thought was a keloid was actually a new pouch of infection. I had it lanced a week ago and it was filled with pus, and for some reason it came back again. They took a CT scan and the doctor said today that there is a tiny ray of light that shines all the way up from my neck to where the graft site is. Whether this is a slow leak of some sort or what we are unsure. So today they ended up cutting the sac open with a razor and letting it drain, aspirating it and then packing it so it will stay open.

It sucks having another open wound to deal with. What sucks even worse is the fact that my doctor wants me to be tested for some weird genetic anomaly which basically would be my immune system not producing enough collagen to heal itself properly. Its some auto-immune disorder but basically could possibly be the reason why I have been having so many issues with my healing (repeated infections, hip fractures, etc) this far out from the original surgery date. I am young and *should* have youth on my side, as well as the fact that I am a non-smoker, and take pretty good care of myself- I am a surgeons dream patient as far as that goes. I pray its not that because if it is then we will be at a standstill as far as my treatment goes and most likely it would be to just try to clear things up and then just stop surgeries altogether. It would also be that all the surgeries I have been going through were for no reason at all, and that is such a huge dissapointment for me that I cant fathom it.

I felt I had gotten to a good place where if this was it and the doctors couldnt do any more for me that I could finally be ok with myself the way I am but I realize that its so much deeper than that. We always hold out hope for the best as humans, even if we say we dont have any. To not have any hope would make you feel crazy when you are in the midst of it all- shreds of hope are what have held my sanity together throughout this whole process. I have always thought that God wouldnt let me suffer like this to just reach a dead end, I felt after he had humbled me enough or whatever his purpose was that he would reward me with the desired cosmetic result. I know I have to hold out until its really over but there is some nagging feeling in the back of my mind that says it already is. Whether its just my slowly built up pessimism towards a positive result or the reality and truth of it all I dont know.

There are times I wonder if this will ever be behind me. I have been so discouraged, especially lately. Just not hungry, depressed, tired...just mostly tired. I'm tired.

Eww

It seems I have developed a keloid where my incision on my neck closed up. I am not sure how I feel about this. One is it's one more disgusting thing about my appearance that I have to accept, and two, I have hopes it will shrink and maybe even go away but there's nothing I can do to make it go away by crying about it *sigh. It just feels like theres always something new to worry about and deal with, but such is the nature of dealing with an ameloblastoma. Will it ever end?

Here's a picture of it, I feel like I should name it since its so big.

"You should shave your head"

Recently I was having a conversation with a friend of mine and she said to me, as so many have said before, "Man, Tina, I just don't know how you have gone through all of this. I think I'd just go crazy if it was me, I just can't imagine."

Its funny, but the first words that popped out of my mouth were "You know what? You should shave your head."

Of course this was met with a big 'what do you mean?!' on her part, and rightly so, it did seem like an odd thing to say at the time. But the more I think of it, the more I like this idea. I think that anyone who really wants to know what its like to go through something that completely alters your appearance should shave their heads- especially women. I dont mean just shave it shave it- I mean like BIC it- use a razor and get a nice, shiny, bald Mr. Clean head. Then go walk around without a hat for a while and see what it's like. This is what I have felt like for the past 2 years. People will stare. Some will point and whisper. Little children will candidly exclaim "Mommy, look at her head!" as children are so very outspoken and honest. The first few days you will be quite embarrassed. You will send your husband to the store for the few small things you need. You wont want to go put gas in the car because you are tired of the stares. You will begin to think its nicer to stay at home and read a book than it is to go walk around the mall for a while like you usually do on Saturday afternoons.

Then, after some time, after you have, of course, re-shaved your head numerous times b/c hair grows back (much faster than jaw bone does I have to say- *wink) you'll start to feel melancholy. You'll start to hate staring at the walls at home, and miss feeling the sun on your face and the wind ruffling your hair. You will start to feel down, so one day, maybe a few weeks later for you (took me about 10 months or more) you decide to go to the store when you are out of bread instead of sending your husband. You are so glad to be back outside among the living that even though people are staring at you all over again, its ok. Its still nerve wracking, and maybe the more blatant ones who dont bother to hide their candid rudeness will upset you a bit. But you are so glad to be back outside that you realize- who cares? My head is bald, but I am still a human being, I still need to go out and do things and be alive. After all, staying indoors and hiding away from the world is not truly living.

This may seem completely out there and over the top, but in reality I think that everyone needs to go through a life-altering change to their appearance like this in order to understand people like myself who have these things happen to them and who's bodies have been changed forever- breast cancers, tumors, amputations, etc. I think the common thought is "I'd just DIE if anything happened to my face!|" I know I myself had thought that up until the time I was diagnosed with the ameloblastoma and even after it was removed. But you know, you realize after a while that it really isnt what is on the outside that counts. We begin to rely on our looks in society so much, especially as women, that we forget to take care of what is on the inside. So when something happens to the outside we become frantic and depressed, we feel like we are less than women who have perfectly attractive, 'normal' faces.

These days I like to think of myself as an analogy for the pottery maker who is making his latest masterpiece. I am a new pot. The embarrassment, the tears and the anger I have felt since the beginning are transforming me into a new beautiful piece of pottery. I was beautiful before, when the Artist first formed me. But I was made out of soft clay. If I was poked with an object, my sides would cave in and I felt pain. I couldnt even hold water because I was too weak. I needed to be put into the fire in order to achieve my true beauty as an individual. The 'new' piece of pottery that I am going to become is so much more beautiful because it has been through the fire and become stonger, it has a shiny glazed outside and a hard inside, it is more useful because it can now hold things like it was meant to.

Still, every day is sometimes a struggle for me and I often feel tired of dealing with all of this but I know it will pass. I like to think of a quote by Anne Frank: "I don't think of all the misery but of the beauty that still remains."

Liberating!

So, tomorrow I get my PICC line out. I only have two doses of the Zosyn left to go, my 2 pm and my 10 pm. Yay!!! I am going to feel so liberated having this out of my arm. I told Chris I am going to shower until I am all pruney and white and wrinkled. Unfortunately, the doctors do not think I am ready to go off antibiotics all together so I get to take these absolute horsepills of penicillin twice a day for another 2 months. But, its will be worth it to be off the IV meds!

My neck wound is ok, the wound is getting smaller and smaller. But it does still drip here and there (do try to control yourselves, I know that is awesome) which sets my anxiety rolling every time it happens. I am really ready for it to close entirely and it seems to be taking forever! My swelling looks down a bit every day so that is good.

I hate to admit this but for some reason I worry that I am not out of the woods yet. Every time something happens I worry that its another infection. For example, over the past week or so I have been getting flushed and my face stays pink and warm for quite a while. I am wondering if it isnt the Zosyn, as the doctor said I had a delayed reaction to it with the itching while it is going in, so maybe it is because it is in my system all day long that every once in a while it makes me flush like that. There is that, and then also the incredible fatigue I have been getting over the past 3 days. It usually hits me around 6 at night, so I am not sure if that can be attributed to the fact that I just wear myself out all day and then just have to lay down or if it means something more. I just cant stop worrying that the infection is going to come back- it consumes me sometimes, and its all I can think about. But I have to take this one day at a time and just hope that I am okay from here on out.

I realized I havent shown my hip scars lately and how they've healed. They are looking good. The scars are still red, but they will fade over time, and all of the bruising is gone. I am really happy with how they look, the incisions follow the line of my hip bone and are very even. When they totally heal I think they will hardly be noticeable. I am going to show pictures from the first day, and the last picture is from today. You can also see how much weight I have lost, hopefully that won't continue or soon I'll look like walking stick person with a big balloon sized head.

It's been a while- updates

Sorry it's been so long but things have been so crazy, between giving myself my meds 3 times a day, lack of sleep, wound care, trips to the hospital, and taking care of kids the past weeks have been a bit of a blur. So I thought I'd give an update for those following along with my story.

Yesterday was a good appt. They ended up taking another panoramic x-ray b/c the dr wanted to make sure that all was well with the graft before he signed off to have my PICC line removed Sat. He was very happy and he said there is still so much bone in there and the graft looks good. So now we are playing the waiting game until probably about April. If all looks good by then (and I can manage to stay infection-free) then we will proceed to the next surgery. I still have at least 4 to go, maybe more but those will all be simpler than this one. One surgery to put an implant to hold the shape of my chin (when the swelling goes down it will cave in again b/c theres no more fat/cartilege in there since they took it w/ the tumor) and they will also have to 'release' my lip. Basically it is pulled in and they have to go in and release it by cutting up the scar tissue that is pulling it inwards. Then 2-3 more surgeries to do the teeth implants if all goes as planned. I dont even care about those surgeries b/c from what I understand they are a drop in the bucket compared to what I have been through with all these bone grafts.

So Friday at 10 pm is my last dose of the IV antibiotics which means they will send someone out on Sat if they can, if not then Mon to have my Groshong removed. Then I can shower again, I am so looking forward to it. The incision in my neck is almost closed, they are having me leave it uncovered now which is kinda yucky (some stuff still comes out of it every once in a while, ew) but I am dealing. They said it will help it to close all the way if its not all bandaged up 24/7. They did one last cauterization yesterday, and I didnt wear a bandage all day. Nothing came out of the wound, and I was so happy and liberated. Then last night I was on the computer and heard something *drip* onto the chair...well, there was some fluid coming out which is totally normal- it is still an open wound but it freaked me out and I started crying. I realized it just brings up memories of the day the infection came to light, where I laid down for a nap and stuff just started running out of my neck. Then I ended up in the hospital and it was all such a nightmare for me, I think I am still traumatized from that experience. I've never felt so out of control of my life as I did that week. So I bandaged myself up for the night and now I am not wearing one today, so hopefully it closes up quickly. I hate having to worry about fluid shooting out of my neck in public (isnt that a great picture?!), its certainly not conducive to making friends :).

That's about it for now. After the PICC line is removed I will still make trips to the hospital twice a week until my wound is closed, then we go to waiting and waiting until we know for sure that the graft has solidifed. I am taking multivitamins and supplements to help my body out with nutrition so it doesnt absorb the graft due to deficiencies in my diet which is still a fluid/soft diet by the way, ugh.

I also sat down and compiled a few pictures which I believe are in order (they were not organized well) that I have taken from the beginning to show the progression of the swelling going down. It still has some ways to go, especially underneath where the infection was, but that will go down too eventually with more time.

No more drama in my life

Ha, yeah right. I am either the unluckiest person when it comes to all this stuff or there is something really wrong with me...yesterday when I was carrying my 2 year old son I started to jog with him across our parking lot (it was raining) and I heard a loud *crack* sound from my
right hip. My hip kinda swung forward and it threw me off balance so I just sat down on the ground, it hurt so bad at first that it took my breath away.

I had to go to the ER and met my dr there. They took X-rays and found that I had fractured along the top of my hip bone. No surgery required but I have to be on bed rest, no weight on that leg and use crutches for six weeks. Ugh. My hips felt fine! They said they had to take so
much bone from both sides for my graft that they are still weak whether they are bothering me or not. I often forget they've been operated on at all. I was just starting to feel normal after my
infection that landed me in the hospital and now this! Ridiculous.

And if I hear one more time "well THAT wasn't supposed to happen" or "that doesnt usually happen," I am going to scream.

So, I woke up today in a fair amount of pain. It was so hard to sleep last night, I could only sleep on my left side because obviously the right side is out, and then when I tried my back the pressure of my body weight bearing on my right hip was too much. Its also so hard to use my crutches that I have just been hobbling everywhere but then every once in a while I will bear down harder than I thought and the pain just shoots everywhere. Its difficult not to be on your feet when you have a little one at home. Ashley is spending the weekend at my mom and dad's again, she only got to be home for 3 days before something else happened. I am going to try to get proficient on these crutches this weekend so she can come home again. I need to be able to get up and down our apartment staircase on crutches so I can get her to school, that's the biggest dilemma. I can get up ok but down is so scary, its a pretty steep flight of concrete stairs and with my track record these days I'd most likely end up at the bottom of it with a crutch sticking out of my eye or something. I have also been feeling so tired all the time, which is not like me, all day yesterday all I wanted to do was sleep. I am guessing its just my body's way of saying it's had enough. It was hard to get up this morning too.

Yesterday Chris said he was telling his boss about everything that has been going on lately and his boss said if he hadnt been hearing it from Chris and know him that he'd think that he was full of crap. Boy I think I have never wished I was full of crap so much in my life and that I will just wake up and this will be the world's craziest dream or something. I guess I just keep saying well maybe our luck is about to turn for the better after all of this. I am, however, seriously considering just putting a bubble around myself like Bubble Boy and living like that. I am sure somehow I'd manage to damage myself anyway.

My son keeps using my cruches as weapons, he will pick one up and carry it around going "Bam! Bam!" I think he's trying to take me out. Here's a picture of him 'guarding' my crutches, every time I need to use them he cries and I have to wrestle them away from him:


That's it for now, I wore myself out! Oh and the swelling looks about the same, maybe just a *tiny* bit smaller. So nothing new to report there.

So begins the waiting game

Not too much new to report, it seems I am entering the waiting territory where we wait and wait until we find out if the graft was successful or not, barring any other complications I may have of course. I now only have to go to the hospital every other day (yay) to have my wound checked. We no longer have to pack it because it is too shallow, so we just have to wait for it to heal itself up the rest of the way naturally. That is nice because now we just have to keep it clean which is easier. I switched to a smaller bandage and dont have to wrap that gauze around my neck anymore- as long as I dont have an allergic reaction to this tape. I had a bad reaction to the tape while I was in the hospital, my neck was all red and irritated and bleeding. So we switched to paper tape which is gentler on my skin. I hope it works because the other is so bulky and uncomfortable.

The swelling looks the same so nothing fun to report there either. At this point I guess it is going to take a while but I cant help but feel impatient for it to go down already. Here I am today:

Well, another good day at the doctor with some confusing news as well. The doctors are very pleased with how my neck wound is healing up and it seems the infection is either 100% gone or going. But today they said I am not considered out of the woods yet because there is no way of knowing...is the infection gone because of the aggressive meds I am taking (the Zosyn) or is it gone because it just is. Does that even make sense? In essence, is the only thing keeping my body from rejecting the graft the Zosyn? So I guess we wont know until 5 weeks from now when I stop the medication if it is going to come back or not. That is disheartening because I had thought that once I finished the Zosyn all would be well and to think that it could possibly come back and my body reject more and more of it is so scary to me. Will I have to be on medication for the whole 6-9 months it would take for the graft to solidify? Is that even a possibility (dont you build up immunity to certain meds over time)? Ugh I dont even want to think about that. So send good healthy thoughts my way that this turn around is because my body is starting to 'like' my graft and not 100% because of the medication alone.

So I still have to go every day this week to have my wound checked and packed by the doctor. The incision is getting so small, Chris said last night it's like trying to stick gauze into a paper cut. I now have a medicated syringe we have to squirt into the wound for the next week or so but hopefully it will be closed up soon so I can shower again! Its too hard to shower with not being able to get two parts of my body wet, if I only have to worry about my arm getting wet it would be so much easier.

My swelling looks the same today. I know its a long road but I guess I am getting impatient. I have lost 11 pounds, and none of my pants fit right anymore. Because of my strict diet it will be almost impossible to gain that weight back again but my goal is to not lose too much more. I am onyl at 119 right now (I was up to 130 before my surgery) so any more could be bad for me health wise. I am also taking a multi vitamin to get my iron and calcium levels up.

That's all for now!

Yay for good news

Well today we got some more good news. The cultures came back from the lab, and the stuff that is still draining from my neck (ew I know) is no longer pus but normal tissue secretions. I feel so relieved because I haven't noticed much of a change as far as drainage goes, I mean its been much less than it was when I was in the hospital but still its coming out. I was worried that I'd have to have my neck cut again because of how rapidly the hole is sealing itself up and the fact it was still draining. So that was relieving to hear, it seems the Zosyn is doing it's job.

My swelling is going down, and I am starting to feel good again. I even went to Target yesterday. Its funny, before this all happened, even after my surgery on Sept. 11th I was scared of people seeing me. I guess maybe after all I went through with my hospital stay and all that it changed my outlook- now I dont care one bit about people staring at me. They can alllll kiss my butt because at least I am not sitting in the hospital! I hope this attitude stays, because that was always so discouraging to find I still cared how people thought of how I look, people I'd probably never see again and who were rude enough to stare. And this time it's much worse, with my neck all bandaged up and my jaw still swollen and this bandage covering my Groshong on my left arm, I kinda look like someone beat me up.

I gave my doctors a bit of a laugh today. Every morning before I leave the house I change my neck bandages just because I like to go out with clean ones on. They have been asking me to bring in 'the specimen' (the bandage with the discharge on it) and I always forget it. Well, today I remembered, so I stuck it in a baggie and found an old Christmas ribbon and put it on top. Then when I got there I told my doctor I had a present for him. They all thought that was funny referring to my nasty disharge-y neck wound bandages as 'a present.' Hey, I still have to have a sense of humor about this. ;P

On a side note, I have been feeling so exhausted with this medication routine. I am super tired because I cant sleep for long stretches of time. I have to set my alarm for 1 1/2 hours before a dose to take the medicine ball out of the refrigerator to get to room temperature. It was originally only one hour before but my vein was getting too irritated with the coldness so now it has to be out longer. So I set my alarm for 4:30 am just to get up and take the med ball out of the fridge, then re-set my alarm for 6 am to take it which requires getting up, washing my hands, using an alcohol prep pad, inserting the saline syringe (which takes forever because you have to do it soooo slow), then attaching the med to my IV line. So then after about 15 minutes I go back to bed, re-set my alarm for 7:30 am since it takes an hour and a half to all go in, and then at 7:30 I have to get back up, wash my hands again, un-attach the med ball from the PICC line, swab it all with alcohol and do another saline syringe flush.

I have to repeat this routine 3 times a day and darn if it doesnt always happen when I want be sleeping! If I try to nap in the afternoon its always around a med time (2 pm) so I cant, then at night my dose is at 10 pm so it doesnt even finish until 11:30 so there's no such thing as going to bed early. Blah. When I think about having to do this for 5 more weeks I swear I want to go crazy. Not to mention I cant remember what it was like to shower like a normal person. I have to wash my hair in the kitchen sink because I cant get my neck wound wet, then I go in the bathroom and sponge off my upper half of my body (cant get my Groshong arm wet at all) and then I run the bath water and kind of crouch in the tub and clean myself that way. I cannot, absolutely cannot take baths. They just disgust me, its like sitting in my own filth and stewing just is NOT getting clean. Cant do it. So that is how I bathe myself every day. I miss showering, because I used to do it at the end of a long day to relax, and I wont see that shower for another 5 weeks. Boo.

Anyway, my left arm is feeling much better, the hot compresses and trying to relax it more have really helped, and the lump that was forming on the side of the vein has gone down. I have also had some weird dreams, I am sure if they are stress related, but last night I dreamed my head surgeon was accusing me of not coming in sooner, and that this infection was all my fault. I think in my heart I still worry about that, and it bothers me.

Here is a more recent picture, the swelling is really going down isnt it?

Groshong is short for STUPID

I am waiting for a nurse to come to my house. My arm that has this Groshong in it is extremely sore and I cant use it much. From what I have read this is not a normal occurence so of course I am worried it is already infected or something stupid along those lines. Its not red or swollen and I dont have a fever which are the signs of an infection but then again my face wasnt red and I wasnt running a fever when I got this whole dumb infection in the first place so what does that mean anyway- obviously my body doesnt work like 'normal' bodies do. The nurse said it sounds like it could be what they call mechanical phlebitis (sp?) which is just like an irritation of that vein and it can be resolved by hot compresses and things like that so I pray thats all it is b/c I swear if they have to take this out and do another one or admit me to the hospital again I will go crazy. Ugh!

Still a chance

Today at the doctor something great happened. My main surgeon decided to take an x ray to see what all was going on with the bone graft. Well...after being left in the room forever and freaking out they came in and said it appears that you have only lost about 20% of the graft. This means that I still have an 80% chance of the graft taking if we can kick this infection soon. I am just amazed, I've been crying and going through all kinds of emotions. Going from there's pretty much no hope in my heart to this is just such an emotional whirlwind for me and I dont want to get my hopes up but still....

So, last night was Chris' first experience packing my neck wound. It went ok, barring the fact that he was extremely timid and afraid to hurt me (no surprise there). But I think he did well. I still worry we arent doing it exactly right, but what else can we do- I cant sit in the hospital for the next few months just to have them do it for me. My doctor is trying to get an at home nurse to come change my neck wound but that would be hard because its twice a day, and my insurance might not cover it.

I also gave myself my first IV treatment without the nurse last night at 10 pm. It went well, and it is really easy. The Zosyn comes in these little vaccum packed balls that look like grenades, so you dont even neeed an IV stand. I can hold it in my hand or put it in my pocket and walk around while I am doing it which is nice. First, I have to take the medicine out 1 hour before to warm it up. Then, I swab the end of my groshong with an alcohol swab, then take a syringe filled with saline solution and get the air out of it by pulling back on the syringe as far as it will go, and then pushing up until one bubble pops out of the tip. Then, I screw it on to the groshong and squeeze about 1/2 inch, then release, then squeeze 1/2 inch, then release until the whole syringe of saline has gone in. That clears the line out, I guess. Then I undo that, swab again with an alcohol pad, and attach the end of the medicine ball to my groshong and flip the release button that lets the medicine flow in. It takes about an hour and 20 minutes to all go in which takes forever but its ok because I only have to do it every 8 hours (6 am, 2 pm and 10 pm). It sounds complicated but its really simple. I hope this gets rid of the infection quickly but still this morning there was a lot of discharge coming out of my neck. There is a worry that because my immune system is basically freaking out that my neck wound is healing faster than it should and there wont be room for the stuff to come out if it closes up entirely before the infection is cleared and then I would have to have it cut again, which I do not want to have. So in a way its like a race to clear up the infection before the wound shuts. Worst race I ever went to.

So thats that today. Still no more pain which is great. I was in so much pain before I went in to the hospital and its nice to not feel that anymore. Oh and the swelling looks the same today- not too bad but not great either.

Here's a picture of my 'Zosyn ball.' The things they come up with these days! I thought I was going to have to wheel around an IV stand or pump or something but its so simple. It basically deflates so when its all done you can see the core of it. Crazy.

To heck in a handbasket in 13 days

This has been a rough week. I was hospitalized last Monday for a serious infection in my new bone graft site (from my surgery a couple weeks ago). This morning just before I was released doctors said there isnt much hope for whatever graft will be left if it continues to stay infected. It seems the drainage is coming directly from the graft site and they think my body is rejecting this graft very aggressively.

I didnt even know I had an infection until Monday when I laid down to nap. I couldnt believe it when (yuck) stuff just came pouring out of my neck. I was beside myself. When I got to the hospital the doctors informed me that I was extremely sick. Now that I look back, that second week home I did have much more pain and had gone back to taking my hard core pain meds. Part of my heart feels I should have known then.

I am now on a long term antibiotic (Zosyn) three times a day in order to control the infection. I had a Groshong placed, its a central line to my heart, so I can do my own IV meds here at home and a nurse comes to help me with it. Doctors also had to re-open my throat on Tuesday to drain out the pockets of infection that were all up in my neck, and had to leave a hole open in my throat so I have to change my neck bandages every day three times a day and pack it with silver nitrate which will help the wound close naturally. Its still yucky in there and has a lot of drainage so it grosses me out. Chris is helping me with that and has been so wonderful to me, the doctors gave him a crash course in wound care Friday night and he is doing such a great job. The doctors couldnt sew my neck back up because of the chance of trapping infection inside so I will be stuck with an unattractive stretched out scar on my neck when it all heals up as well. Blah.

This has been such a hard time, I just feel numb. Its hard when you have gone through surgery to feel it was all for nothing, and to also not understand why your body is reacting the way it is. This graft was 90% my own bone, so in essence my body may be rejecting its own bone? Which is extremely unusual of course....but hey its me right.

I just wanted to update you all on what's going on. If you pray, pray that this graft is safe from the infection and I still have a chance.

Here are some recent pictures:

When I got home today (trying to stay positive), after a week of not seeing Aron, he is so happy to see me!

My Groshong, it goes to my heart:

The difference in the swelling from just the infection being drained, first picture is tonight, second is before I went into the hospital:

I am so sad right now. I sent Aron off with my mother in law because I just cannot take this pain and take care of him too. It's knocking me off my feet! I called Rite Aid as soon as they opened and gave them the prescription number and everything...turns out they said the prescription is 'non transferrable' because it was written by a resident not the doctor himself...ok my doctor has his residents do things all the time for him, I dont get why that is an issue, he was obviously writing the prescription on the doctor's orders right?! So I had to call Highland and ask them if another doctor could authorize the RX so I can get some pain medication. Turns out they are in a big meeting (typical) and wont be able to have anyone do it for a while. I am so frustrated! I know I shouldnt have waited so darn long but I really didnt see it was going to be a problem, and Vicodin is a pretty standard medication. I should have known, nothing's easy when it comes to medical anything. I hope it goes through because my only other option is to go all the way out to Oakland and have it filled in the pharmacy at the hospital which takes forever and I'd have to have someone take me.

Lots of fun stuff

So there's lots going on these days.

Oh wait, no there's not, there's just PAIN. Stupid freaking PAIN!! I am miserable these days!! My swelling is going down on the right (slowly) but for some reason it's making that whole area more sore, it throbs all day long, and the Vicodin makes it stop but I can feel it still a bit all the time. Its like the kind of pain that consumes you and is all you can think about. What I dont get is why is the side that seems to be healing first hurting most. The swelling has been 'pushed' to the left side of my face so its lopsided, I guess I thought that side would be more painful because of the swelling but its not. I am calling first thing tomorrow to ask about getting some of the Tylenol 3's. I am freaking because I only have 2 Vicodins left and I need them to sleep tonight so tomorrow morning is going to be miserable.

Here's my lopsided mug:

I have decided that my caloric intake is much less than the amount of energy I am expending every minute of each day. Its so frustrating because I cant open my mouth very far at all, I can barely get my pills in. Pretty much whatever I can eat has to be shoved onto the back of my tongue and swallowed (absolutely no chewing allowed) or it needs to be able to go up a straw. I am so sick of 'drinking' my meals every day, I feel like I will go crazy before this liquid diet restriction is over. I am tired of fruity drinks, tired of milkshakes, tired of Ensures, tired of soups with nothing in them just broth, tired of water, Capri Suns....I want a big fat juicy steak, a baked potato, some carrots and zuchinni! The past couple of days I gave up on eating and didnt take much in at all. Well, last night I was running a fever and every muscle in my body ached from walking around the hospital all morning, it scared me. I know I just have to keep eating, no matter how gross my allowable foods are *takes a nice big sip of her Ensure...puke*.

So boo liquid diet.

Also, boo to my inability to just freaking do things like a normal person. I admit I was a naughty girl today and decided to try to climb down our back flight of stairs (about 10 of them) and do a load of laundry it the laundry room. Bad idea. First of all, I got stuck halfway down when I realized it was a mistake but I was carrying a laundry basket full of dirty underwear and T-shirts so couldnt very well just go back up. I managed to make it back upstairs but was so out of breath I thought my heart was going to beat right out of my chest. You'd think I'd climbed Mt Everest. So when it was time to go back down and put them in the dryer, I got all the way down (which was easier without the clothes basket in my arms) and some lovely person had 'followed the rules' and closed and locked the laundry room door. I had left it open on purpose- damn rules- so I had to climb alllllll the way back up and get my keys just to go back down and put the clothes in the dryer. I think I will now be bedridden the rest of the day and when Chris finds out I did laundry he is going to have a coniption fit. Maybe he wont notice, sometimes it seems like guys think that clean clothes just magically appear in their drawers, so who knows.

It's just rough because I want to be able to do things, but I get so out of breath or I really start to hurt after walking around for a while that I have to stop. I want to be better now. I know its going to take time but its hard for me to know when to stop, basically. I just keep going and going until I am so out of it that I can barely move and end up laying around the rest of the day feeling sorry for myself and feeling about 200 years old. My pain control is another issue that has come up these past couple of days. The Vicodin seems to be too strong (it also gives me migraines and dry mouth) but the Tylenol extra strength just isnt cutting the mustard. So far today I took a Vicodin last night at 11 pm, then this morning popped 2 extra strength Tylenol since I always wake up in pain from sleeping on my cuts/face, and am now debating if I should do the Tylenol again or give in and take a Vicodin because of the physically draining morning I had.

Other than that thats about it for now...swelling looks the same today, but the bruises on my hips are really fading fast.

Today I got half my stitches out. It was uncomfortable but they did it and then they moved on to my hip incisions...lets just say those cuts were NOT ready to lose their stitches. Ouch. Pain. So I have been sleeping off and on all day and taking my Vicodin at regular intervals and am sore all over. I have to go back next Friday to have the rest taken out.

Yes, I can definitely see a tiny difference between a few days ago and today's pictures. The swelling is slowly starting to come down! I am so happy.

A few days ago (first pic), vs today (second pic):


Also, my last Vicodin was at 2 am. I am allowed to go 6 hrs between doses but typically am waiting for the last hour or so to come around so I can pop the next one because of the pain...well it is 11 am here and I am ok, just starting to feel some aching coming on so I took two extra strength Tylenols and am going to see if that is enough for a while. If not I will take another Vicodin, I want to see if I am able to start weaning off them every 6 hrs, but am scared of the pain coming back full force. Hopefully this is the start of an upswing!

Well, yesterday went well. Apart from losing my cell in the morning (we dont have a landline phone) and discovering it underneath the couch, I think things went better than I expected. Having gone back to the Vicodin is really helping and I am thinking of staying on it for a couple more days just to be sure.

I really have been tired of laying in bed so what I did yesterday was I took our office chair which is super comfy, piled 3 pillows on it to raise myself up, and then put the ironing board on its lowest rung and set up an ironing station where I could sit to iron. I have been watching it pile up and pile up in our room, Chris is so good with doing the laundry but wont iron, and I am a total ironing FREAK. Between that and drinking a mug of coffee (courtesy of a sweet friend from Hawaii, it was soooooo good) and watching Project Runway reruns I had a pretty good morning, but paid for all my sitting up later on with somewhat painful hips. My mom came at noon to feed Aron and then she laid him down but he decided not to nap. My biggest issue has been lifting him up, especially to get him into bed. Being two, he runs now when you call him, so diaper changes or even little things are rough as I have to go after him and hunt him down, then pick him up. My poor hips really arent ready for that kind of treatment but when its just me here I have no choice really.

Some good news- I was able to sleep on my back periodically last night without choking, which was a nice change and I slept really well. Also, when I woke up today I could swear it looks like a tiny bit of the swelling had gone down but I cant really tell. I just woke up so I will post a picture later on today.

First day alone

Well...half day or so anyway. My mom is coming around noon. Chris had to go back to work today. Do I feel ready for this? No. Especially since we discovered yesterday that regular extra strength over the counter products are not going to control my pain at all. Do I want to ask anyone for help again? No! I'm so sick of feeling helpless! Its really starting to get to me. I had a mini breakdown last night when I went to put Aron to bed and realized he only had 1 pacifier. Ok, where are the other 5 I ask Chris? He doesnt know. I cant crawl under the bed to get them myself like I normally would and I just swear I lost it because I had to ask him to do it. Not to mention the fact that he has been taking such wonderful care of me but he isnt me, our poor apartment has been so cluttered up with junk and papers and things not where they belong (someone forgot to read my 'dont be a flat surface abuser' post it note). So whenever I can I hobble around and try to pick things up but it always ends up where I wear myself out and spend the rest of the day in pain. *Whine.

So I mentioned the doctor felt that I could go off the Vicodin and try extra strength Tylenol instead. That was probably the dumbest suggestion anyone has ever made to me and if I see him on Thursday when I go get my stitches taken out he better run or I will probably kick him square in the nuts and then while he is on the ground give him a nice hot Brazilian wax on his nether regions, remove one of his fingers with a plastic spoon and then tell him to go home and not take any painkillers. Ugh. I woke up that afternoon actually writhing in pain and crying out, it was horrible. I have been able to sleep on my hips if I carefully move onto my side, so I have been doing so to alleviate the stress on my throat from laying on my back, but I didn't realize unil then that its only ok with a lot of painkillers in your system- it felt like someone had taken a blowtorch to my hips and I couldnt stop it, my face was swollen worse and even today I am still barely able to talk again. Poor Chris just stuck a Vicodin in my mouth and laid with me until the pain started to ebb but man I dont want to experience that ever again. The Vicodin both scares me and makes me feel better. I hate having to rely on them and would really like to stop taking them but I see I am just not ready for lesser pain relief of any sort yet. I worry about addiction, and I also worry about taking care of my son while on it but I have to. So, that is fun.

Other than all this, my swelling looks the same today which is a bit disheartening. I am so ready for it to start going down. When I went to the hospital yesterday people stared and stared at me. I hate it. I understand it, because I too would wonder what happened, but it hurts to feel like a circus side show freak when you are just going to a routine appointment. I am not looking forward to Thursday either because, as much as they say it doesnt hurt, having stitches taken out of your throat does hurt a lot. And my hips look like they have a million stitches in them too so I am wondering how they are going to feel, not to mention after another morning of walking like yesterday I am already going to be in a world of hurt.

Is it just me or does this blog just get sunnier and sunnier? Blah!

Here are some pictures of my healing hips which is the only improvement appearance-wise. The right side,where most of the bruising occurred, is really improving and the bruise is getting lighter, the left side decided to bruise up more but its nowhere near as dark or painful as the other side. Oh and excuse the underwear in the second shot (yes, ma, they are my sensible white cotton unders) I just want to how how the swelling on that side has really gone down, before my side was sticking out and puffy from all the bruising.

Post- op appointment

So today was my first post-op appointment. It went very well. The doctors seem very, very pleased with the results, and are hopeful that this will be it. They cleaned up my neck scar and got all the old adhesive off, then the doctor tried removing some of the stiches on my neck which hurt, so they decided they werent quite ready to be taken off. I do have to go back Thursday for that which shoud be fun.

The constipation is from the Vicodin, so they told me to stop taking it and try taking extra strength Tylenol at the highest dose possible for a couple of days and see if that is enough to manage my pain. I am skeptical of that since the Vicodin and Motrin hasnt been enough but I would like to get off the 'hard core' pain meds if at all possible. They did say that they could give me a prescription for Tylenol with Codeiene (Tylenol 3) if I need something harder. For the constipation they said try Metamucil and another dose of laxatives today. I really hope that lets up because at this point it has been more painful than even my hips. I did sleep a little better last night, the apnea is from the swelling and they said it shouldn't last more than a couple more nights, as the swelling in my face should start to go down soon, though it will be a couple of good months before it is down completely. So far I have only noticed the insides of my mouth arent as swollen, but the outside looks the same to me. My hips are looking the same, but my walking has really improved. I was able to walk all over today, though now I am paying for it with some dull pain in my hips from all the pressure I put on them but the dcotors were very impressed with the fact that I was so up and about already when they had estimated such a long period of time of recovery in that aspect.

So.....if this graft takes (basically in 6-9 months we will know for sure) then I will have to have another smaller surgery where they will take fat and tissue from my hip or butt (ha ha) and go inside my mouth and make a series of cuts on the inside where my lip has sunken in to release all the scar tissue that is in there that is pulling my lip inwards. Then they will fill that area in with my own tissues and sew it back up so my lip will be back out where it belongs and not sunken in. Then after that heals they will proceed on to implants. I am very much hoping that this all works as planned because I just dont think I can do all of this over again! So that is the news thus far. Again, thank you so much for the good thoughts everyone.

Here is what my face looks like today (one of them is from last night), as well as my neck scar after a few stitches were removed. My hips are looking pretty much the same.

Losing my mind

I am really losing it over here. This is night two of no sleeping...I checked into it and it is what my friend said it was, I am experiencing episodes of sleep apnea. It is so so frightening to just STOP breathing when you are trying to drift off to sleep. I will feel myself falling asleep then wake up with this weird snort/snore sound like something is caught in my throat. Sometimes I can actually feel my throat closing off when I relax. I have tried everything, including trying to lay with my face down (try that when your head is grotesquely swollen), trying to hold my mouth open so I can breath through my mouth and not my nose, and keeping ice packs on my throat all day to bring the sweling down. I googled it and I found that it can happen after facial trauma or surgery, but I am just praying it is only temporary and related to the hugeness of my throat right now, and not something the doctors did when they cut my throat or worked in my mouth, causing my airway to be resitricted somehow. That would mean another surgery to fix, and I just will absolutely lose my mind if I have to go through another surgery right now over something like this.

It just is horrible to me that on top of everything else- being hungry because there is such a slim range of things I can eat right now, my face being incredibly swollen, my meds not working the full 6 hour stretches I have to wait to take them, the bruising, and discomfort- that I have to deal with something like this on top of it. The longest stretch I slept last night was from 3 am (after I took my vicodin, which knocked me out) until 6 am. Thats IT. I am so tired, I NEED sleep!

I have my follow up tomorrow so I am going to ask the doctor if there is anything I can do in the meantime until the swelling goes down to make sleeping easier, or, in worse case, ask him if this is a permanent thing we are going to have to deal with now. Thinking back, I know the first couple of days in the hospital sleep was no problem, but was it because I was so hopped up on tons of different medications that it was knocking me out and I was still experiencing the apnea just not realizing it? This is just so scary to me. When will it end?

Lately I keep waking up because my throat is so swollen when I start to fall asleep something happens to my throat and it like closes off....I am praying this is just a side effect of the swelling and not something else that is 'wrong.' It is pretty hugely swollen. I dont know.

Home, day 2

Still a lot of pain and no way I lay is comfortable. I cant lay on my back because it makes my throat close from all the swelling and I cant breathe, but when I lay on my sides my hips start to hurt so bad. My face is even bigger today, I didnt think that was possible and whenever I look in the mirror I feel disgusted with myself. I feel very discouraged today and I just dont know how I am going to get through this. I am so of tired of hurting.

Not so hot

...feeling or looking that is. But I'm alive. Too much medication in my system for a real post so I will update you all tomorrow.

Pics from just now, of the swelling in my face and my hip, only posted one of my right hip but both hips are cut and bruised. I pray this ends quickly, I am in so much pain.

Tomorrow is the big day

I have so many mixed emotions about this surgery right now. Part of me wants to get it over with but the other part is just so scared. I havent been sleeping well at night, probably because what I have been doing all day is running myself until I am ragged, then taking a nap because I am exhausted, then as soon as I wake up I start going again. I know that's not healthy, on top of the fact that I am not eating much at all (I havent eaten yet today) and am drinking copious amounts of coffee to keep going. Reminds me of my college years all over again, and this is like a final exam- with a bit more of a painful ending result.

I always realized I was a control freak but you just dont really know how bad you are until you have to relinquish control of everything to everyone else...I think in a way that is why this is all so so frightening for me. I caught myself yesterday, after instructing poor Chris exactly which color sheets to put on the bed for when I get home from the hospital (the navy blue ones, so they dont show blood) and I think that is when I first realized just how awful this obsession to be in control has become. Its pretty much out of control and thank god I have a significant other who loves me, because there are post it notes all over my house with instructions on them for when I am gone. And in case you dont already think I need to be committed, here is just a taste of what those post it notes say: 'Check the mail every other day or the mailman gets mad,' 'Don't be a flat surface abuser,' (courtesy of my good friend Shannon, it means dont be stacking old mail and junk all over the end tables and top of the computer armoire etc), 'When Aron says "CAW" it can mean either cookie, car, or that he wants to color,' 'Dont forget to check the temperature of Aron's bath water,' and 'Make sure the top and bottom locks are locked on the screen door if the front door is open so Aron cant get out.'

Yes, I know.

So there is the control I wont have over my home while I am in the hospital, not to mention the control I have to give up to the anesthesiologist who will be putting me under, and the doctors who will be performing my surgery (both of whom get the perfunctory 'please remember I don't want to die at 26' remarks before the anesthetics kick in). Then there's the fact that once I get home I will not be able to walk or clean up the house like I am used to doing...I dont know what I will do then. I tell you its enough to make my head explode. Perhaps I will play my Sims game on my computer and just fire the maid, then I can clean my Sim family's house neurotically, or just move in a new person who is exceptionally messy and clean up after them all day.

Yes, I know.

So anyhoo, these are thoughts that a frantic person like myself has before surgery. Today I went and bought a ton of Ensure (darn those are expensive) and things for Chris for dinner that he doesnt have to cook, just pop in the oven. I am taking care of all the laundry and ironing so that it wont plague me while in the hospital- yeah I will ask myself 'I wonder if Chris is wearing a shirt he didnt iron'...and of course once I am able to, I will update you all on how I am doing, with pictures and everything. Today is my first day of documenting before and after pics, so here are the last pics of me with my old titanium plate in from the side and the front:

I hate this

I hate how I feel before surgery...I am tired all the time, sleeping during the day, no energy, stressing out, crying all the time, emotional, cranky, upset.

Blah.

Well, they called and changed my pre-op to....today! Argh. I guess they lost my last panoramic and lateral x-rays so they need new ones before Friday. So I told them if I come in to do x-rays today I am doing the whole bit and that's IT. So off I go for bloodwork, full medical history write up, release forms, anesthesiologist and x-rays- all with a 2 year old in tow. Fun.

Getting ready

So today was fun...the doctor called to schedule my surgery date and my pre-op appointment. Naturally I had known I was having surgery here on the 11th or 12th but for some reason this just ruined my last good week. I am a bit of a "if the date is not here yet I won't think about it" kind of person, and honestly that is how I get through this surgery stuff by just not thinking about it until I have to. So it really just put it back in my face I think and I started to get really anxious and worried and just all around unhappy about the whole thing.

Anyway, so the actual surgery date is the 11th of September. Call me supersticious but not exactly the date I want to be operated on (911 anyone?!) but I take what I can get. My pre-op is this Friday, I will meet with the anesthesiologist and get all my bloodwork done that day so I can go under the knife the following Tuesday.

So here's my fun story. We get done with all of that planning, and I go to finish my laundry...come back and there's a message on my phone from the doctor saying they want a mold of my face so they can see how far back to place the bar and can I come in 'as soon as possible'....as in today, right now. Ok...so can I bring my son (he's two)? Usually I'd just stick him in the bathtub with a can opener and a can of spaghettio's but this just isn't a good time with him teething and all. So he says sure, as long as he can stay still for 15 minutes guaranteed so we can get the mold done. Um, yeah...he is two. My 7 year old cant even stay still for that long with any sort of guarantees, heck I'm not even sure I can at this point I'm so darn nervous. I decided to call my mother in law and ask if she can watch Aron. She is actually home, so she says yes.

So I grab Aron in his pj's, no shoes or anything, grab my purse and walk out the front door only to realize, as the screen is shutting, that my keys are on the computer desk inside. I grabbed the door but it shut before I could get to it. Of all the times for it to close on its own, the darn thing sure as heck wont close when I am in a rush and just want it to do it for me, but it will close when my arms are full of groceries or, in this case, when I am staring at my keys sitting on top of the desk. And, of course, today is the day that the landlord is at work and my fiance started his new job in San Francisco so I am basically kinda up a creek without a paddle.

So there I am on the porch with NO keys, a toddler in his pj's and thats about it (who, by the by, decided then was a relaxing time to relieve himself along the number two course in his diaper, of which I had no replacements with me so the smell made it all the more special of a time for us), and I just break down crying. Looooooooong, crappy story somewhat short, my daughter didnt lock her car door (I'll never yell at her again for forgetting to lock her door) so I was able to get the carseat out and mother in law came to pick me up and I ended up driving her car (most cautiously I might add) to my appointment. I did have to cut the carseat out because we had it secured using the LATCH system and it was like an iron vice, I just could not get it out so I ended up ruining the leash by cutting through it and will have to buy another one, but it all worked out.

So the impression got done, they stuck an oxygen thing up my nose then stuck my face in a big pile of amalgam, or whatever it is they use for impressions, so that was fun and most importantly, is now done and I dont have to go back until Friday. Phew! I'll keep you posted from here on out, only one week left.

What's new

Sorry I havent posted in a bit, getting ready for my next big surgery here which will be Sept 11th or 12th. As usual before any of my big surgeries the fear starts to set in...I start to think morbid thoughts and pretty much just try to prepare myself for anything that might happen. The scary thing about surgery is really just losing all control. I am pretty much a self-admitted control freak, so basically the whole putting my life in the hands of the doctors and the anesthesiologist freaks me out a bit. Today I didnt eat until about 1 and even then I had to force myself to eat because I was shaking from my morning '6 cups of coffee' routine.

On the home front things have been rough as well. As if I don't have enough on my plate, my daughter's most recent ADHD medication just isn't working out- unfortunately we find this out less than a week before she starts the second grade. Argh! We have yet to have an 'official' diagnosis, so this whole med game we have been playing is getting really old. I am looking forward to when we can find out what all is wrong and address the issues instead of just saying 'well lets try this med and then this one,' etc. Fortunately she is going to be evaluated by the school psychologist this winter and maybe then if we can get a referral to go through with her medical insurance we can get her in to see a specialist. I am not yet satisified with a simple unofficial diagnosis of ADHD through the pediatrician, I have suspected since I first began my research on ADD and ADHD that she has sensory integration issues and possibly some bi-polar as well. Without her being on meds (she has been off since Friday) she has been an absolute wreck, and consequently so am I. So much for resting up before major surgery huh?!

I have decided that this time around I am going to document my surgery, so if you are squeamish you may not want to check any of September's entries ;). I want to take pictures, including before and afters. The new plate they will be putting in is going to be significantly smaller than this one I have now, and set further back. They are also aiming for a more feminine jawline, which is less angled and squared off. My 'old chin' and jawline was fairly pointy, so this new one I have not liked as much and have never gotten used to the chin part jutting out as far as it does (I hit it on everything). Its not all about me not liking it though, the skin is really stretched thin because it's way too large for my face, and my poor bottom lip is sinking in. With them making it less squared off they are thinking it will ease that lip a bit so its not so tight.

They are taking bone from both of my hips this time instead of just one hip and from the front (anterior) instead of the back (posterior). Usually the posterior hip bone is larger but in my CT scan it showed mine are larger in the front so they will make incisions in both of my hips and take the bone and then cut my throat again and graft the bone into place as well as replace the bar while they are in there. It has been so long since I have had big surgery like this one (the ones from that first major surgery/tumor removal up til now have been smaller) and I do not remember much but I do remember two things: the pain and the horrible swelling. Yet as with all things I do what I have to do. Hopefully this time is the charm. I'll keep everyone updated as well as I can. If you can spare exra good thoughts and healing vibes, send them my way!