Renewing Strength- My Journey with Ameloblastoma

Post surgery update

2011-05-20T08:20:00.000-07:00

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

2011-05-16T12:53:00.000-07:00

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

2011-05-16T10:22:00.000-07:00

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

2011-05-13T12:31:00.000-07:00

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 :(

2011-05-11T17:05:00.000-07:00

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

2011-05-07T07:59:00.000-07:00

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!

2010-08-10T12:13:00.000-07:00

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

2010-02-04T09:17:00.000-08:00

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

2010-02-02T16:57:00.000-08:00

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

2010-01-31T15:51:00.000-08:00

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!

2010-01-14T16:13:00.000-08:00

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

2009-12-02T19:42:00.001-08:00

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

2009-10-27T19:36:00.000-07:00

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.

2009-10-22T14:54:00.000-07:00

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!

2009-10-20T17:15:00.000-07:00

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

2009-10-06T08:52:00.000-07:00

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

2009-09-21T20:36:00.000-07:00

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

2009-09-07T09:59:00.000-07:00

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?

2009-08-06T08:05:00.000-07:00

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

2009-07-23T13:13:00.000-07:00

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!

=(

2009-07-14T06:48:00.000-07:00

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

2009-07-08T12:44:00.000-07:00

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...

2009-06-23T15:57:00.000-07:00

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...

2009-06-22T08:28:00.000-07:00

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

2009-06-09T08:15:00.001-07:00

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

2009-06-02T17:27:00.000-07:00

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

2009-05-07T08:39:00.000-07:00

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

2009-05-02T13:38:00.000-07:00

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?

2009-05-01T08:52:00.000-07:00

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

2009-04-28T15:46:00.000-07:00

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

2009-04-20T13:52:00.000-07:00

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

2009-04-15T17:15:00.000-07:00

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

2009-04-10T08:15:00.000-07:00

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!

2009-03-24T08:53:00.001-07:00

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

2009-02-27T20:09:00.000-08:00

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

2009-02-22T17:14:00.000-08:00

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...

2009-02-22T06:19:00.000-08:00

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

2009-02-21T12:54:00.000-08:00

"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

2009-02-21T12:34:00.000-08:00

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

2009-02-20T10:01:00.000-08:00

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

2009-02-17T23:10:00.001-08:00

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

2009-02-16T09:46:00.000-08:00

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

2009-02-06T10:14:00.000-08:00

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 :)

2009-01-26T08:29:00.000-08:00

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

2009-01-22T07:09:00.000-08:00

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

2009-01-17T19:08:00.000-08:00

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

2009-01-07T19:03:00.001-08:00

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

2009-01-05T11:26:00.000-08:00

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

2009-01-05T06:59:00.001-08:00

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."

2009-01-01T21:05:00.000-08:00

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

2008-12-23T16:40:00.001-08:00

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

2008-12-18T13:20:00.000-08:00

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....

2008-12-15T15:09:00.000-08:00

My hips hurt when it rains.

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

That is all.

Lucie from Quebec, Canada

2008-12-09T20:27:00.000-08:00

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

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

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

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

And she has.

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

Not much new to report

2008-12-07T10:01:00.000-08:00

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

Ugh

2008-11-25T07:33:00.000-08:00

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

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

Some attractive pictures of me

2008-11-21T11:26:00.001-08:00

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

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

So, here they are:

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

Just a picture

2008-11-17T18:47:00.000-08:00

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

Where's the teeth?

2008-11-17T18:44:00.000-08:00

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

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

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

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

That's the latest news for now.

Appointment tomorrow

2008-11-16T20:24:00.000-08:00

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

As usual, I'll keep you all posted.

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

2008-11-14T10:01:00.000-08:00

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

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

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

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

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

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

Still no appetite

2008-11-12T11:42:00.000-08:00

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

2008-11-11T09:57:00.000-08:00

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

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

Post surgery update

2008-11-10T07:32:00.000-08:00

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

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

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

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

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

Surgery tomorrow

2008-11-06T16:28:00.000-08:00

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

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

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

Only 4 days to go

2008-11-03T20:42:00.000-08:00

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

Sorry its been so long

2008-11-01T20:18:00.000-07:00

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

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

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

Implant surgery scheduled!

2008-10-17T07:47:00.000-07:00

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

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

Keloids and worries

2008-10-12T19:28:00.000-07:00

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

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

Yay :)

2008-09-29T11:44:00.000-07:00

Things are continuing to go well. I went in this morning for the dentist to adjust my denture, it had one spot that pinched when I opened my mouth wide but its 100% comfy now. I am so happy! The metal that was exposed already looks like it is starting to fill in more. That screw that was showing is mysteriously gone and covered now (already, even the doctor was surprised!). I really do think it was that bulky thing I was wearing in my mouth before, it would make my mouth sore and it was so hard to talk with it in, I think it was rubbing away the skin graft from having it in so long, but I had to wear it to keep my lip from falling back in. After that vestibuloplasty I wasnt taking any chances of having it go right back in the way it was before, so it was kind of a lose lose situation there. My doctor seemed very happy to see it is filling in after only a few days of wearing the new denture. So they are going to call me to schedule my appointment to have the teeth attached to the implants, it is an outpatient surgery done there in the clinic so I get to go home right after, there will be some swelling but nothing like before (I dont think, though I am a sweller).

I am just so excited to get so far, after everything I have been through. I am trying to stay positive. I do still have to have a couple of smaller procedures, really just cosmetic stuff, done in the future but right now I am staying focused on getting the teeth permanently attached! There are so many things I am looking forward to being able to eat again, I swear I'll probably gain 100 pounds in the months after this surgery.

Got teeth?

2008-09-26T18:15:00.001-07:00

I did, some new bottom ones. :) Right now it's just a temporary denture but they will actually be attached to my implants later on. I think we are aiming for in a couple more months, it feels like they keep telling me 'a couple more months' but I am pretty sure they mean it this time!

I like it. Cosmetically, there are a few things that bug me but I am going to have to get used to it. First, my chin juts out in my profile. BUT it looks ok from the front so I can ignore that. Second, on either side of my mouth its a bit sunken in (because the chin comes out so far). There's not much they can do about that now. Also, its almost impossible to smile, and when I do- the bottom teeth dont show! Argh, after all this time waiting for teeth and they dont even show when I smile! I hate that because the only way I can smile now is with my mouth partially or all the way closed. That is because I lost SO much soft tissue and gum on the bottom that they can only build it up so far, so it is lower than where my normal teeth would come up to (if that makes any sense). It also makes it a little difficult to close my mouth all the way naturally. I am going to mention that to the doctor on Monday when I see him again. He wanted me to wear it for a bit before they made any adjustments to it. I am sad that I have lost my old smile, but will have to get used to this new one.

Pics!

Teeth- excuse the pimple on my chin, I swear I am almost 30!

One Chris took of me smiling, he thinks I look beautiful:

And the closest I can get to a smile where my teeth are showing:

Talk to you all soon!

Biebrich scarlet

2008-08-29T11:10:00.000-07:00

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

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

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

*waves.*

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

An article on ameloblastoma, with pictures

2008-08-27T09:24:00.000-07:00

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

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

http://www.ispub.com/ostia/index.php?xmlFilePath=journals/ija/vol17n1/graft.xml

Maybe no surgery...but I doubt it

2008-08-27T08:36:00.000-07:00

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

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

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

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

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

Yay for girlfriends!

2008-08-13T17:00:00.000-07:00

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

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

Reaching out

2008-08-02T18:51:00.001-07:00

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

Slacking, worrying and new jobs- oh my!

2008-07-27T07:37:00.001-07:00

Sorry I have not updated, I just havent really been in the mood. Sometimes my blog gets me down because its all about my ameloblastoma, but sometimes I need it, so here I am again. Things have just been crazy this past week, first finding out I have to have yet another surgery, then the worry there wasnt enough bone to finish the surgeries, and then finding out there was, then the anxiety over getting a job, and then getting that job...told you its been insane.

Basically I am looking at another surgery here because part of my plate has to be removed. This sounds like it is fairly common, though I was not expecting to have another surgery like this again, thinking I was nearly done. The part in my mouth that is exposed is not getting any smaller, in fact it has gotten a bit more exposed even, and the doctors are saying it has to be cut out because as long as it is exposed I am at risk for infection. They havent decided whether they need to remove all of the plate or just that small part yet.

Basically the plate is only put in for stability when they cut the tumor and jaw bone out, and some doctors (from what I understand) remove it anyway after the patient has formed a new stable base of bone under it. It will be done intra orally so no neck cutting (thank god, I cant handle that again, just cant do it) and should be out patient surgery. My biggest issues are always with swelling, so I am scared and not looking forward to it of course.

My biggest concern now of course is my new job I just got- yesterday! We are hurting a bit financially, I have basically put my life on hold for 3 years now to deal with all of this and we just cant do it anymore. With as much as gas and food have been lately we are no longer able to get by the way we were on just one income living in Northern California, its just not happening. So I got a small night/weekend job at Barnes and Noble, a local cafe and bookstore, to supplement our income and help out with expenses. Its one of my favorite stores, and I have almost 6 years of experience working in a coffee shop from when I was in college so I think they are going to start me off in the cafe which will be nice. I can get out of the house a few hours a week and be around other adults which should be therapeutic and also bring in some income. SO no more saying I need surgery tomorrow, and giving me no time in advance! I am going to have to let them know I will need 2 weeks now to prepare for any procedure, because I need this job and do not want to lose it.

Having this new job is really important to me not just for the money but for me in a way its starting to live my life again. These past years in dealing with this thing have just been that- dealing with doctor appointments and surgeries and healing and all of that makes you forget you are actually human for a while and you feel like a walking medical anomaly. It is very draining. I am excited about what is to come, I just hope that things stay on the upswing for a while now because for a while there I was very worried about everything.

As usual, I'll keep you all updated (or try to be better about it, at any rate).

Depressed

2008-07-17T19:57:00.000-07:00

I have been dealing with some depression lately. Its odd because it strikes me at such weird times, never around the times that I am going through the hardest things, but rather it sneaks up on me when I seem to be doing well and just kind of takes over. I know a lot of it is our financial issues, and us needing to be in a better place in terms of the money that is coming in. Dont get me wrong, we are doing fairly well for living in Northern CA on one income, even if we are paycheck to paycheck, but if I had never had this tumor we'd be a dual income family for sure. First of all, I am not meant to be a stay at home mom. I just feel like I am meant to be out working, using my brain more than I do here at home all day long, and just being around other people more. I find myself bored alot, and feel understimulated all day long, as well as short tempered and just all around tired of being home all day long. I have been looking for a part time job but my hours of availability are far from great since we cant afford daycare for 2 kids and no one has called me back yet.

I also have the worry of if I do get a job when will my next surgery be...I am scared I will get a job and start working and then BAM! have to have another surgery which will have me resting for a few weeks again and I could possibly lose my job. It seems that from here on out I am only going to be faced with outpatient surgeries but who knows what will happen between now and then. "We're almost done"- I have heard that before. The one thing I have learned out of all of this is that with ameloblastoma, nothing is predictable or guaranteed. I have always been the kind of person who likes guarantees and to be able to see what is going to happen next. Its just a part of my personality and being super organized, and that just hasnt been a thing I have been able to do these past few years. There are times I feel just so out of control with it all.

We are also dealing with a lot in terms of Ashley (my oldest) and trying to figure out what is going on with her behaviorally and mentally/emotionally besides the ADHD diagnosis. She hasnt been sleeping well for a few weeks now due to her medication, and the lack of sleep is definitely taking its toll on me as well. These darn hives are still sticking around too, I am starting to think its related to her not sleeping and the added stress I have on me now worrying about her at night too. So I am still taking the Benadryl which makes me feel woozy and tired all day, and that is contributing to the depression. Its just a lot all at once I think, and I am sleeping far more than I should and snapping at the people I love far more than I normally do :(.

Anyway, I just keep hoping it will lift. I have never been able to stick to a pill when it comes to my depression, it seems to come and go anyway and is never around 24/7 so its not like it is anything I will be going to see my doctor for. Maybe I will get some good news on Monday at my next appointment. They should have my lower denture ready, I hope it fits nicely and is more comfortable than the thing I have been wearing lately.

Waiting and waiting...and itching

2008-07-14T09:29:00.000-07:00

Well, I havent seen my doctors for a while and they dont need to see me again until the 21st, so I have gotten a little bit of a break which is nice. They are in the process of making me a denture that has teeth on it for me to wear while we are waiting, as the implants still need a bit more time, and we are also hoping that the exposed area in my mouth will cover itself up a bit more. To be honest it looks the exact same to me all the time, though last time I saw the doctor he said it looked a little smaller and seemed satisfied. I dunno what they are seeing that I am not so I just dont look in there except to make sure that I have rinsed everything out of my mouth after a meal.

A new development I have had lately that I do not think is even related to all of this is a bad case of hives that have cropped up, and have been here since Wednesday night. I am so itchy and horribly miserable. I have been taking Benadryl around the clock, as if I go longer than 5 hours without taking another dose they crop back up again. They are awful when they come and just take over my whole body in patches, with a series of raised bumps that all just mesh together to form one big sucky patch of itchy crappiness. *Sigh. I am eagerly awaiting their departure. I am not under any more stress than I have ever been in, in fact things are fine lately, and believe me I know stress and have been under huge amounts of it before, and in the past it has been the only reason why I have ever had hives, and never longer than 24 hours either.

Anyway, I will update you all of course when I know more.

I am SO sorry!

2008-06-25T14:53:00.000-07:00

I realized I havent update you all as I promised I would! How awful of me. Anyway, my last appointment went well. I saw Dr. Indresano this time, and he says he feels that the area will cover itself back up again. Worst case scenario is I may get an infection (with it being exposed there is always the possibility) and have to have a small piece of the plate removed, but that of course is worst case...other options are to put a small bit of skin over it, so it would be a much smaller skin graft than last time was, or even, he says, to leave it be- some people live with metal in their mouths exposed all the time, so we will see. Of course with me being so susceptible to infection I would feel better if it was covered up but I will leave the decision up to them.

I go back in next week for them to take an impression, as he wants them to make me a denture that actually has teeth on it that fits down there to wear for now until the implants are 100% ready to go. This bumper I wear is really uncomfortable and I dont wear it as often as I should, and he is concerned about my lip falling inwards again. So, that is it for now.

Oh and in other news, Chris and I have started plans to get married this winter, most likely in December when my surgeries are (hopefully) almost over, just in case anything happens with my insurance. I hope nothing major happens between now and then, we have been engaged for 3 years now (since right before the doctors found my tumor) and have been putting things off repeatedly due to always needing a new surgery or some other medical mishap that happened to me. We are really going to do it this time, and I am so excited!

I'll try to be better about updating.

Doctor appointment tomorrow

2008-06-17T20:00:00.000-07:00

I know I havent updated in a while, things have been crazy with my birth board on my online community and I have been dealing with that craziness as well as being worried about my medical issues, so it's been a bit of an overload.

Anyway I have my doctor tomorrow at 10 am my time, I will find out just how bad everything is and we will decide where we are going to go from here. Please send good thoughts my way. I can handle another skin graft if I have to, as I know it would be smaller than this last one was but ultimately would of course like to not have anymore of these big surgeries in front of me! I am anxious and worried but trying to remain optimistic.

I'll update tomorrow...

Blah :(

2008-06-12T09:07:00.000-07:00

I couldnt sleep last night.

It's my own fault. The way I deal with some things is to just not think about them or look at them. Well, what I should have done is look at what the doctor was talking about yesterday and I just didnt do it, so I am not *quite* sure what he is talking about. So I tried to look in there last night. Well, I can see a LOT of metal down there and I dont know if its the implants or if its supposed to look like that or what but it wasnt just 2 cm- it was a LOT of metal showing...is it more of the plate exposing itself already or what?

I am so freaked out and just feel sick all the time. I cant eat, and I am just always feeling like I want to throw up. I feel another surgery looming here...another skin graft at best to cover it back up again or...worse if I get an infection in there.

Please send good thoughts my way. I have come so far, and I just feel like I cant go on more if anything else bad happens.

First bad news in a while...

2008-06-11T11:50:00.000-07:00

and I am not sure how to handle it really.

Today the doctors saw 2 cm of exposed area in the front of my mouth where the plate is as well as an area on the left that is thinning out and getting ready to become exposed. This is pretty bad because that means there is an opening down into all that nice fresh bone in there- what my body has been working on since September pretty much, and it is highly susceptible to infection. So the doctor put me back on antibiotics in the hopes of warding off infection, lots of oral rinses with salt water, no food down there, etc. The best outcome is that it will granulate back in and cover itself back up again- but the worst is just so bad that I dont even want to think about it.

But I cant help thinking about it.

This sucks. I am so tired of all of this. I want to give up but I cant and that sucks even more.

The good, the bad and the ugly

2008-05-29T12:33:00.001-07:00

Some pictures.

My hip scars fading from the last bone graft:

My skin graft site on my leg (excuse the long sleeved shirt/shorts combo- I have to wear shorts or it hurts my leg but I am cold today LOL):

What a skin graft that is healing looks like (all the white stuff is skin that has taken). Such a small area for the large amount of skin that has to be taken. :(

Me trying to smile- still hard:

Learning to be happy with what you have

2008-05-29T08:09:00.000-07:00

Last night I slept like a total ROCK. It was the first night in 6 weeks that I have been able to sleep however I want and get no pain. I am a tummy sleeper and I tend to bury my face in my pillow so it was nice to be able to do that without waking up every 30 minutes with some sharp wires digging into the insides of my cheeks or lip. I fell asleep about 10 watching Top Chef, then woke up at midnight when my alarm went off to take my antibiotic, then went right back to sleep and slept until 6 am when my alarm went off again to take my antibiotic, and then slept until 7 when it was time to wake my daughter up for school. I felt so wonderful when I got up today! The lack of sleep has been adding to my stress level these days, and I honestly think that is part of the reason why my face is breaking out and I have been having mood swings, because I am just so exhausted all the time. I really needed that!

Anyway, I did notice something today that has set me on edge a bit. As my chin heals and shrinks up, the area underneath my chin (between my jawline and my neck) is still swollen outwards like a bullfrog almost. The doctor said it is because of all the damaged and inflamed tissue and muscle inside from having had my neck cut so many times for surgeries. But before when my chin was first done and it looked awesome, it was still "big" enough to cover up that area. Now that it shrinks up if I lift my head up even a little I look like I have a double chin from the swelling underneath my neck. It is not attractive. I always have to have something to worry about lately and I just hate that. There is never really any sense of calm.

This made me start thinking about how as humans we are just never really happy. We always say "if I just had ___ I would be so much happier." It could be anything really...if I just had more money, if I could just lose this amount of weight, if I could just have the boobs/lips/eyes of Angelina Jolie, etc etc. This is what fuels part of the obsession with plastic surgery for (especially) women in our society to always be wanting to look better and better. I think it is just in our nature to always be wanting wanting more- but when you get it, believe me, you always find other things that you "just need" to be totally happy. Sometimes those things seem so unattainable to you, so you think that they are the key to your happiness because you just know you will never have it so you think of it all the time. Well, that is how it is with my face I guess. I swore for the last 2 1/2 years "if I could just get my chin fixed, I would be completely happy- screw the teeth, I dont care about how my neck scar looks, etc." Then what happens...things go well and the doctors fix my chin and from the front yes I do look 'normal' now, even somewhat attractive again...you would think that would be enough for me, as I swore to myself just this time last year if I could just have this I wouldnt ask for anything else. But no, now I am looking at all the other imperfections and how I just need that fixed (just today I said to myself "I am going to have to talk to the doctor about this next time I see him").

I cant help but wonder how much of this is just human nature to always want more or how much of this is pure selfishness and conceit. A lot of people who have dealt with what I had have come out far worse on the other side of it. Horrid nerve damage that causes constant pain, lopsided faces from bad healing, eye sockets gone or roofs of mouths gone. In other countries where they cannot get medical help they live until the tumor goes up into their brain and slowly kills them- but not before it leaves them horribly disfigured and alienatedby society first, like this poor man:

Some people even die from having the malignant variety. The truth is, this is just such a rare thing that not a lot of doctors even know how to handle it, a lot of people cannot afford to go to the "top doctors" who know about it, so they end up on the receiving end of someone who has maybe only done one other surgery like this in their life (if at all) and the patient becomes like some kind of medical "tester" in a way. I have been blessed to have Drs. Indresano and Mobati who not only have done hundreds of these cases, but are in the next town over, AND take my chintzy crappy insurance to boot. And here I am wanting more and more.

I want to get to a place where I can just be happy with myself inside and be satisified. This is something that I have been thinking about these past few days. I wonder if I will ever get to that point in my life where I can say enough is enough, Tina, and just be satisfied that I have overcome this medical condition, am not so hideous that people stare, and have a family that loves me the way I am. I think I need to better learn to love me the way I am.

Meh...I'm working on it. ;)

Great news!!!

2008-05-28T13:50:00.000-07:00

I am copying and pasting this update I posted on my ameloblastoma board.

I got such wonderful news today. My implants are almost already
healed. The doctor wants to wait 4-6 more weeks before they put the
teeth in but I am just so happy this is finally happening!!!

The surgery where they released my lip worked well...it has gone back
in a teeny tiny bit, there is just a shadow of an indentation but
truth is it will never be fully flat and cosmetically 'perfect' again
but it at least looks normal now. They stretched it out for 6 weeks.

I had the wires and hardware taken out today without any pain
medication and let me tell you- that was horribly unfun, I cried like
a little wussy when they pulled them out of my jaw. But now no more
poking into my soft tissue and I will hopefully be able to sleep at
night again. I am back on antibiotics because of the holes from the
wires, just as a precaution but hopefully after that all will be well.

I am not able to wear a denture or anything yet as the skin graft
inside needs more healing time but they did put the bumper back in, it
is a soft thing that holds the lower lip out so it isnt caved inwards, but
it is purely cosmetic and only to be used when I am out and about- at
home I am to look like a tiny old lady and leave it out lol.

Just wanted to update everyone on my happiness!!

Ch-ch-ch-ch-ch-ch-CHANGES

2008-05-09T14:18:00.000-07:00

So lately I have noticed some changes in my 2 year old and am wondering if its all related to what has been going on lately with my surgeries. For one, he always calls for daddy now...I am sure this change occurred back when I first got home and for the first 4 days just did not have much to do with him at all being in a pain reliver induced coma half the time and just generally not wanting to be touched by two year old fingers that often cause destruction unknowingly. You parents out there, I am sure you know what I mean. Its sad because it used to be that he would call for me when he needed help or something without fail. Now its like he doesnt want da-da out of his sight. Score one for dad but a big loss for mommy :(. It seems this child has forgotten who gave birth to him but its ok, I'll remember that the next time he wants a cookie.

Another change is that he is so much more sensitive to my reprimands. He has always been sensitive but now when I get frustrated (which is often, as I get tired easily for the month or so after a surgery and it takes me a while to bounce back) and use a sharp tone with him he just gives me this look like a whipped puppy and backs away. Its hard to even discipline him as it melts my heart every time he looks at me like that!

My 8 year old is often a mystery anyway but I have noticed a small change with her as well, though for the better. I didnt realize how much all of this has affected her, although I knew it was obviously because there was so much going on, but she doesnt often voice how she is feeling. She has been noticing me out and about more lately, we have been pretty social, had some friends over last weekend for a BBQ, then I had her girlfriend and her mom over for dinner last night (which was fun) and just generally been getting out more. So she has been asking me if now I will go to events at school with her, I used to send Chris because I was so uncomfortable with going, you know how kids stare but mostly because I just didnt want anyone to tease her about my face the way it looked before. One time I was at her school to get her and some kid walked up to her and said "That's your mom? What's wrong with her face?" and I heard her mumble "Nothing is wrong with it, leave her alone" and walk away but I could see it bothered her a lot to have people notice something 'different' about me. It broke my heart so I stopped going to anything at school, even just driving up to get her instead of walking to her classroom anymore. Today when I went, I went in to get her and she just seemed so much more confident and happy, I guess the way I have been feeling lately is rubbing off on her and she sees the difference too.

Anyway, my leg is healing slowly...I have found that if I let it get dry it gets incredibly sore. Last night I put a thin layer of Neosporin + Pain relief on it and oh what a difference! Even if my sweat pants rubbed on it it wasnt so bad. So I went out today and bought another tube and am going to keep it on. I think it will speed up the healing process as well, since that is what Neosporin is supposed to do anyway, right? I bought these cute shorts and cant even wear any of them because it is so darn chilly here these days so the pants are starting to chaffe. It wouldnt be so bad if it wasnt windy...so I have to keep wearing the pants and its really uncomfortable. But next week is supposed to heat up so hopefully I can wear some shorts and get some relief on my leg.

I go back to the doctor onTuesday, of course I will keep you all updated.

No news is good news?

2008-05-06T15:38:00.000-07:00

I had my weekly check up today, and nothing new to report. "All looks good, more waiting" seems to be the theme of these visits but heck I will take that over "that's not supposed to happen" or "what is that coming out of your face" know what I mean? I think you do.

I have another few weeks of this annoying thing that's wired into my jaw but the sharp pain is less and less and has been replaced by headaches. Since my lower jaw is jutted forward a bit it is hard since I cannot pull it back in...imagine clenching your teeth and then leaving it like that 24/7. No fun, but better than mind numbing pain I guess. I have found less talking = less pain so I am trying to follow that rule. On Sunday night we had two of our good friends over for a BBQ (I got to try to eat macaroni salad and thats about it) and I talked it up as I havent seen them in ages, so as a result yesterday was very very sore and I even had to take a vicodin to sleep last night. But today I feel fine again so I am trying not to push it like that too often. I admit I am getting worried about when they take this thing out, I dont know how they will get it unwired from my jaw, they mentioned something about cutting the wires and sliding it out but I cannot imagine that would be NOT painful since it is, after all, attached to the floor of my mouth via wires they poked into my face from the outside! Ugh. But I guess we will cross that bridge when we get to it.

More Tagaderm (sp?) on my leg...its not ready to be left uncovered. I guess the rationale behind that is if it is left to air out so to speak it will form a large hard scab immediately which will be painful to heal from and making it difficult to walk, so they are letting it build up 'slowly' and keeping it covered is just making those cells generate slower I guess. I dont mind, so long as its not shooting pea soup everywhere or dripping on me when I sleep (sounds gross but it has happened before).

I have been feeling so much happier these days. These doctors have really given me another chance at life and I am so appreciative. I just dont know how I can ever let them know how grateful I am for all they have done for me. Just this simple surgery has changed me so much and how I feel inside. I can look in the mirror and not hate what I see, after 3 years of hating myself and refusing to look at my whole face (I got into the habit of looking at myself in the mirror from the nose up- very odd but that's part of how I dealt with it all). I am just feeling so happy all the time.

Of course I'll let you guys know if anything exciting happens, but so far I guess no news is good news right?!

New picture and a new worry

2008-05-04T14:46:00.000-07:00

Well things are going very well. The pain on the right side is really starting to go away and only hurts if I try to stretch my mouth by smiling. I havent had a vicodin since Friday night. It is still lumpy a bit underneath and looks a bit weird under there still. It hasnt gone down much at all and I am worried it is going to stay that way but the doctor said it can always be made to look better later, I know the main concern is my chin/mouth/bone/teeth right now.

My new concern is the nerve on the right side. When I try to make any kind of face or something in the mirror its almost like it is paralyzed. I have never noticed it before..I am wondering if it is because I am scared to move that side because it is the painful side or what but I have to force myself to make it move or think about it (like 'move the right side up when I am smiling'), it doesnt just make movements on its own. I am going to ask the doctor about it and am wondering when all is said and done if I will have a lopsided smile. After everything I have been through that really is a small thing but it would kinda suck if that happened as I really do miss my smile since I am a pretty hysterical person :).

Anyway here is today's picture (with a new way too short hairdo that I guess I am hating less each day but still it is way shorter than I would like and I cry missing my hair). Oh and I am not mad I swear, though I look like I just got done killing some people in this picture:

Another update..tired of me yet? :)

2008-05-01T08:34:00.000-07:00

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

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

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

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

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

All is well- and a before and after

2008-04-29T19:44:00.000-07:00

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

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

I am scared

2008-04-28T08:20:00.000-07:00

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

Going nuts

2008-04-27T15:23:00.000-07:00

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

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

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

Pain

2008-04-25T14:49:00.000-07:00

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

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

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

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

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

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

Update

2008-04-24T15:23:00.000-07:00

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

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

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

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

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

My leg yesterday (its starting to swell):

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

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

Getting ready

2008-04-21T08:29:00.001-07:00

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

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

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

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

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

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

2008-04-18T12:49:00.000-07:00

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

Today I almost missed my pre-op appointment.

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

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

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

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

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

Surgery is on Wednesday

2008-04-16T16:26:00.001-07:00

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

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

More good news, and a new surgery

2008-04-15T14:12:00.000-07:00

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

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

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

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

Great update

2008-03-20T12:15:00.000-07:00

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

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

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

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

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

Keep the good thoughts coming everyone!!