Newlywed :)

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







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

Missing my smile

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

I miss my smile. :(

Sorry I am MIA

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

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

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

I'll keep you all posted!

Goin' to the chapel and we're

gonna get married!

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

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

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

All is well

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

Worried

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

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

"Accept yourself."

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

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

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

Surgery cancelled

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

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

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

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

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

Surgery again

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

A glimpse into the future....

My hips hurt when it rains.

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

That is all.

Lucie from Quebec, Canada

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

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

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

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

And she has.

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

Not much new to report

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

Ugh

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

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

Some attractive pictures of me

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

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

So, here they are:





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

Just a picture

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

Where's the teeth?

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

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

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

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

That's the latest news for now.

Appointment tomorrow

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

As usual, I'll keep you all posted.

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

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


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


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


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

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


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

Still no appetite

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

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

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