Bad scare today

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

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

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

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

Scoop and curettage

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

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

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

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

Gah!

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

Teeth pics and more

As I promised:



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



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



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

Post op tomorrow

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

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

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

Day by day...

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

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

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

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

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

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

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

Rare Disease Day February 28, 2009

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

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

For more info go to:

http://www.rarediseaseday.org/

Ouch and ick

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

Other than that I am just dandy.

Recovering

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

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

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

Swelling going down:


The teeth:


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

out of surgery

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

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

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



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



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

Please no

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

Surgery Feb 17th

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

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

Newlywed :)

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







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

Missing my smile

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

I miss my smile. :(

Sorry I am MIA

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

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

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

I'll keep you all posted!

Goin' to the chapel and we're

gonna get married!

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

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

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

All is well

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

Worried

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

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

"Accept yourself."

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

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

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

Surgery cancelled

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

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

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

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

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