8 Years Later

Hello, I am sorry I've been MIA! I have created a support group on the site Facebook...https://www.facebook.com/groups/154326351301307/ (it is private, so go and request an add from me please!) as well as raising 3 busy kiddos! Ages 13, 8 and 3. My 13 yr old daughter has been diagnosed as bipolar as well as PDD-NOS, which is on the spectrum, so that has taken quite a bit of my attention away from my amelo as well as thinking about what the future holds for me in terms of my surgeries. And my 3 yr old is busy busy busy!

I still seem to be in a holding pattern in terms of whether or not this is it for me for procedures. My denture does not fit very well, and is very uncomfortable. Since my last procedure, where doctors placed a bit of metal between my right back tooth and implant on that side in order to "anchor" it down, it seems my denture has shifted to that side and put immense pressure on my back right tooth. So much so, it is often difficult to open very wide at all, which makes brushing difficult as well as eating and, sometimes, even talking. My dr's assured me that it would not "shift" as the implants are anchored in the titanium of my jaw, however, something has indeed shifted, and it is apparent as you can see in front of my left back tooth now, and before it was aligned with both back teeth. I think it's just how my face has shifted after all the healing was said and done, even 8 years later.

I often wonder if this is it for me, but I feel its not. I worry my denture will continue to shift SO much that that right back tooth will eventually break. But, I also need to focus on my kids, and my life as well for once. This tumor has taken 8 years from my life, and its unfortunate that it got to that point.

In September I am returning to school to get my degree, and all I can do is pray my denture stays put long enough for that, then I can focus on what the future will hold for me. Only one more year...c'mon denture, you can do it! *shakes fist*

 Also, sorry if no one has been able to get a hold of me. I forgot about my blog for a while, then couldnt remember my password for blogger and ended up just tonight resetting it. My email is tmarieortega@yahoo.com if anyone directly needs to get a hold of me (all SPAM is blocked), or has any questions. In the meantime, here are a few updated pics of my face, and me with my kids!

Come join our Facebook Ameloblastoma support group. Either find me directly, or just type in Ameloblastoma. I think there are a couple, but ours is just titled Ameloblastoma and it is a closed group, so you have to request permission to join. I did that to keep people's privacy, not to exclude anyone. We'd love to take in some new members. We are currently at almost 200, and counting! It is a very active group!

Post surgery update

So, I am 3 days post-surgery and today am feeling a bit better finally. Honestly, I feel a bit out of practice from surgeries, as this time the pain and healing after has surprised me at how rough it is! Maybe its because I am older, or maybe its because I have 3 kids to take care of now (one of them a baby), but its been hard. I am praying I am on a downward incline from this point out but who knows really.

Tuesday morning rolled around bright and early, as we had to be out of the house by 5:40 am. We got to the hospital and I registered and submitted all my medical paperwork, then went up to the 5th floor for same-day surgery. They did the usual stuff, then took me back. I admit I did freak out briefly when they put the mask over my face to put me under. I am claustrophobic and for some reason it hit me hard this time. They told me to lay back and they put this band around the top of my head (to strap me down) and then the anesthesiologist put the mask over my face and I lost it, I started to cry and panic big time. Then I saw one of my doctors come up and hold my hand, and then I felt better seeing a face I recognized. Next thing I knew I was waking up in recovery.

They said all had gone well. My doctor was pleasantly surprised to see how much bone I had in there when they opened up the area. I am so happy for that, as we worked SO hard for it (multiple bone grafts later, grrr), so that was a big plus. They didnt need to take a bone graft from the roof of my mouth, which made me so happy to only have ONE surgical site to worry about. They did have to debride the area (remove old dead tissue from previous surgeries) and then they placed a small metal plate that screwed into the bone to try to stabilize that area better. Admittedly I am still freaking because there is a lot of movement in there from the teeth still, but they said its probably because its my old acrylic denture and not the permanent one, and hopefully the permanent teeth will fit better after all of this mess. I have to say I do worry that maybe this didnt work, but they JUST did the surgery, so I still have some hope that it will all work out in the end. All I can do is pray that this was a good fix, and that my body heals the way its supposed to.

Post surgery has sucked a bit. My lips hurt really badly from being stretched open for so long, so they got incredibly chapped and cracked and painful and still are. Its almost as painful as the actual surgical site. The skin is peeling off them like crazy and I have a lot of "dead" skin which has turned brown around my mouth that I have been trying to get off a little each day. I am SO hungry too, and at times feel so starving I get cranky and irritable. I still cant open my mouth wide enough to fit a spoon in there, so all soup and stuff has to be basically eaten off the tip of a spoon, and I am sooooooo sick of liquids. My diet consists of Ensure, water, coffee, tea, ice cream, and different kinds of pureed soups. Thats it. And, there is a lot of pain still so after I eat I hurt for a while. My right cheek is the worst with swelling, although today it was down quite a bit, but it has swollen so far inwards that its pressing up against the denture and my inside of my cheek is FILLED with canker sores from the pressure of it. Its like one big canker sore! I am just so ready for the swelling to go down in there.

I had to quit taking my Vicodin because it was....leading to other issues lol. So I am taking the 800 mg Motrin they gave me from the procedure before this. It works, but doesnt take the pain away completely, and near the end for the last hour before I can take it again I am in SO much pain. Last night I just wanted to cry, and ended up taking it an hour earlier than I was supposed to. I think I may have iced the area a bit too long last night before bed or something, because it was just all of a sudden I was in a TON of pain after icing it. So, yeah, Motrin isnt exactly cutting the mustard for pain relief, but I am praying I am nearing the end of the bad pain period, and then it should work just fine.

Finally, I seem to have caught my son's cold so I have a stuffed up nose and a cough. I knew I would, as I had a tickly throat before surgery, and when I started taking the antibiotics I knew I'd get it, as I always get sick either during or after taking antibiotics. The coughing is awesome, since it loosens up blood every time I have a bad coughing fit. Ugh. And, when I feel a cough coming on I cant just COUGH, I have to, like, control the cough because it hurts so bad, so it goes on and on and on, if that makes sense. It sucks big time! Praying it passes soon too.

So, that's my sob story for now! Please pray for continued healing, and that I manage to evade an infection this time around. The worry of that consumes me, so I will be so glad when I am healed in there.

Facebook link

I started an ameloblastoma group on FB, if anyone is interested in joining. The yahoo health groups dont send to my email very often, not too sure why, so it'll be easier to keep up that way!

http://www.facebook.com/tmguillory?ref=profile#!/home.php?sk=group_154326351301307&ap=1

Pre-surgery rituals :p

Have already begun! I know its weird, but after you've had as many as I have, you just get a routine in. Plus it helps with the stress and keeps my mind off of surgery for a bit. I have already changed our sheets (put darker ones on for post-surgery bleeding, just in case), and started laundry. I like to come home to no laundry after surgery! I stocked up on groceries and freezer foods so my poor husband can feed the kids for the next couple of days if need be. Packing my daughters clothes so she can go stay a few days at her grandparents. Making notes for my mother in law for watching the boys. Re-filled my daughter's meds prescription so no one has to worry about that for the next few weeks. Also all day long I will drink just water, and take NO medicine or drink alcohol or anything. And I cant do my last evening before surgery ritual, which is usually eat whatever meal I want, since its normally the last meal I can eat for a while. But, since I still cant chew, I will have to skip that one. :(

Then tomorrow morning I will wake up one hour early, shower, shave, and blow dry my hair out. Why, you ask, do I do all that before surgery? Because if I end up having to stay there overnight I am at least clean for the first night! Hospital showers = NO bueno. *shudder. Plus, the showering and shaving thing is a weird ritual that makes me feel "clean" for going into surgery, if that makes sense. It just makes me feel better going into it I guess.

The morning of surgery is always the worst. I feel sick to my stomach while I am getting ready, from anxiety. Then we leave at the butt crack of dawn (really just 6 am), and drive there, normally in silence since I am so anxious. We go to anesthesia (4th floor) and wait...then they call you in. They take you into a small room and weigh you, talk to you about what's going to happen, etc. Then they take you back into a kind of communal room where everyone goes before their surgeries I guess, and pull the curtain so you're in there with just a small bed. You sit on it and wait...they bring you a gown and slippers, those net underwear (which are SUPER fun!) and a net hat for your hair. You get dressed into that, they give you a bag for all your clothes. Then you wait for them to come start an IV, which for me always takes a couple of tries. That usually gets my anxiety through the ROOF and I always start to cry. Theyll have me say goodbye to my husband, then wheel me into the operating room. Its a white, sterile room with a huge light overhead, and a table with all kinds of scary metal instruments on it. They have me move onto the bed that's in there, and cover me with warm blankets. Then my drs start to filter in (theres quite a few of them) and some residents, since its a teaching hospital. I normally start to shake around this point, and my main dr will come and talk to me, pat me on the back and say "why dont we give her something to relax her?" and then I normally am waking up from surgery.

Thats it, in a nutshell.

Anyway, talking about this is stressing me out so I am going to stop here. Wish me luck! I'll keep you all posted.

Surgery Tuesday

Just got the call, I will be the first case so we have to be there by 6:30 am, surgery is at 7 am.

Another surgery :(

So, I just got a call from my oral surgeon. They decided they need to open up my gums around the area where my implant is to see what the issue is. Because my whole lower jaw is made of titanium, X-rays throw off whats called "scatter" so they cant get a perfectly clear picture of what's going on in that area unless they go in and open it up. :( So, they said they need to see if the area has enough bone to even support the teeth, and, if not, take a bone graft from the roof of my mouth to put in the area. If they think the bone looks ok they will place a small metal plate in that area to bridge the gap so the teeth and that implant have more stability. I'm terrified to say the least, and hate that they gave me less than a week to get ready for major surgery; it always triggers my anxiety. And, I'll be without teeth for a while as well because they wont want to put the teeth back on over a surgical site. I just want to be done with all of this. I feel so conflicted inside, part of me is glad maybe this will be a more permanent solution to the problem but the other part is so terrified, because every time they have to open me up I get an infection it seems, so I will have that anxiety over me as well. Not to mention I always worry they will find another ameloblastoma when they get in there, too. Please pray for me, my surgery is Tuesday morning. I am so afraid.

More issues

Sorry I've been MIA. Pretty much I have still been having issues with that right implant, and its been incredibly stressful. If you remember, they had placed 4 implants and one did not integrate. Well, the one we lost was pretty much the "partner" implant to the one on the far right. So, I have two on the left, a big gap, then the one on the far right. The denture seems to not be able to stay attached to that implant and continues to loosen. In the beginning it was a gradual thing, and I could go a few months with it being ok. They also thought it may have been due to my pregnancy, so we had high hopes it would all pan out after my baby was born. Then it began to loosen almost instantly after being tightened. After going about this way for quite a while, my dr finally decided to remove the teeth and check all of the abutments. This was only a couple of weeks ago. Turns out that the abutment was completely stripped on that implant, so he replaced it, tightened everything and said all was well. We were worried the implant itself had loosened but they said all seemed well (and, quite frankly, its very rare for an implant to fail after integration has taken place). Well, I lasted one week, then the screw snapped off in the abutment again. GAH!!!!

Now, let me tell you something. When you have been through as much as I have, you would do damn near anything at this point just to get some teeth that a) WORK (as in, letting me EAT) and b) will just stay tightened so you arent returning to the teaching hospital your drs work at every week, and spending hours there waiting just to get them tightened, only for them to come loose again! SO, yes, my diet had been liquids and very very soft foods. In fact, after it had been tightened I was so paranoid that I barely chewed! And, it still snapped- when I yawned, no less. Obviously I need to be able to yawn and chew even soft foods to survive, so this just ISN'T working.

The tentative plan now is to go back in remove the teeth, re-take impressions and re-work the hardware under the teeth. My dr says it could be that the bone has settled again in some places and is no longer the way it was back when the teeth were first placed. So, the bone will have changed but the metal obviously would still be the same, and it could be causing stress at certain points underneath when I chew or even just open my mouth. I am hoping they can let me use my old denture (the one I had from my other surgeries back before I got this permanent denture) which looks exactly like the one I have now except it is acrylic, so they can change it to fit my mouth again if need be. I know it wont fit right because its been a very long time, but praying they will not leave me without teeth during this process.

I get pretty beside myself t the thought of them taking th eteteh off. In fact, my poor d has taken to sedating me withvalium before even trying tot ake the teeth off, because my anxiety gets so sky high that I cry and tremble and he says I make himt oo nervous to work on me. Its awful. But, it tatke sme back to the almost 2 uyrs I went without teeth, with peopel poingint gn and staring at me every time Ilft the house, and I just cannot deal. I know that sounds weak, but its where I;m atnow.

Anyway, prayers please that this is the "easy" fix that we are looking for. I am so afraid we will be at a loss if this all doesnt work.

Oh, and a new picture of me these days, with my "baby" who will be 10 mos old in a couple of day! Not so much of a baby anymore already *sniff.

I had my baby!

Jackson Ralph "Jack" was born on July 11, 2010 at 2:13 am. Things are hectic around here and I am running on very little sleep. I have really neglected my blog and I see a ton of ads and spam posts in my comments section which I need to clean up, grrrrrr. But I am still having issues with my denture not staying tightened, so will keep you posted on that when we figure out what it is. I am praying that it will resolve itself and it was just the pregnancy making it that way. I will try to post more when I have more time!

All went well

Just a quick update to let you guys know that my dr said the growing tissue is just related to the pregnancy and is totally normal. He said that after I have the baby it should shrink back down, so if he isnt worried I will try not to be. Now if they could just figure out why my denture wont stay tightened, I would be a very happy camper!

Thursday

SO, my appointment went not so great. First, they tightned the denture again (which is already starting to loosen again). It is still problematic that its loosening up but they havent given up hope yet. Then they saw the little lumps I was talking about. I know its never good when they bust out the camera and start taking pictures of the inside of my mouth. It usually means WTF is this and once again makes me feel like some kind of medical freakshow. Sigh.

So I have to go back Thursday to see the head oral surgeon. They want him to look at the lumps. They are in the exact same area as the others so they think its just more of the excess tissue but a lot of it is really red and inflamed. One of the residents who looked at it said he thought maybe because they are all in the area in the front where the plate is exposed a bit (the area that never closed up all the way, about 1 cm long) that it is trying to cover up that open area but not sure where to grow so its growing crazy all over the area. So I guess that would be a good thing....meaning my body is healthy and trying to heal itself still, but also not good because it is making SO much of it. They cant cover up that little exposed area either, because of the placement of it, so I just wonder when will it stop growing? I am scared because I know they are going to have to go in and cut it off. I am also scared of them taking the teeth off and not being able to get them back on. It terrifies me. Its really affecting everything about me, I am depressed and cant sleep much. I feel sick all the time. I am trying not to let it get to me but its terifying not knowing what is going to happen.

As usual, I'll let you guys know more when I know more.

So anxious I feel sick

Tomorrow I have to go and do what I have been putting off for 2 weeks now. My so called "permanent" denture has been becoming increasingly loose again. I feel so scared to go in because I keep having nightmares they will take them off and I will, once again, have no teeth. I literally have nightmres about it at night and havent been able to sleep well all week just being scared of it. I just do not understand why it will not stay tightened and am so scared it is one of my actual implants that is loose in the bone. If I lose that implant, then all is lost as I have no more bone down there to hold anymore implants to replace it and cant stand the thought of yet another painful bone grafting surgery from my hips. I just cant do that again.

To make this all even more frightening, I was looking in there last night, and in the front where they kept removing that excess tissue (the one they sent off to pathology to make sure it wasnt a recurrence) is more excess tissue coming out from underneath the denture! There are two pink lumps of it squeezing their way out from underneath, and now I can feel another in the back as well so it is a fairly good sized lump. I dont understand why it wont stop growing and am wondering if its the pregnancy that is making it go haywire.

I am just sick with worry over all of this. I feel as if I will never, ever, ever be done worrying about it all, and just wish life could go back to normal again. Its been so long I dont even remember what normal is.

I have been negligent...brief update with pictures!

and I apologize! 10 lashes with a wet noodle for me! But, I am 13 weeks pregnant, and having a bit of a rough time of it with the sickness and sleepiness! I swear I will be back again more when I have more energy.

In this case, no news doesnt neccessarily mean good news. The permanent teeth are in, but giving me problems. For some reason it will not stay tightened. This is not normal, as it should be nice and tight, always, being at the end of all of this. The doctors arent sure what to do with me (as usual). I just keep going in to get it tightened over and over again. It is frustrating and scary to say the least.

They think the issue is the fact I only have one implant on the right, because we lost one in between the far right implant and the middle one. So it is doing all the work for that side of my mouth. Unfortunately, there is not enough bone in the area to put another implant in (my idea) which is why we lost that one in the first place). So you can see why we are at a standstill right now.

Here are a couple of pictures. This one is of my panoramic, you can see all of the metal (titanium bar, and the 4 remaining implants of the 5 they initially put in), as well as the lone implant on the right doing all the work for my entire lower jaw. You can see what the issue is when you see the huge gap, I'm sure:


The permanent bridge before it went in. The metal holes are where they stick the screws through that then screw down onto my implants:



And a belly pic of me at 13 weeks with our last baby, just for posterity, and because I am so excited in the midst of all this anxiety over what's going to happen with my teeth:



I'll keep you guys posted more when I know more about what they are going to do with me. Thank you for remaining my faithful readers!

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!