Surgery cancelled

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

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

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

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

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

Surgery again

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

A glimpse into the future....

My hips hurt when it rains.

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

That is all.

Lucie from Quebec, Canada

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

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

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

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

And she has.

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

Not much new to report

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

Ugh

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

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

Some attractive pictures of me

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

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

So, here they are:





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

Just a picture

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

Where's the teeth?

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

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

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

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

That's the latest news for now.

Appointment tomorrow

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

As usual, I'll keep you all posted.

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

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


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


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


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

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


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

Still no appetite

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

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

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

Post surgery update

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

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

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

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

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

Surgery tomorrow

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

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

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

Only 4 days to go

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

Sorry its been so long

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

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

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

Implant surgery scheduled!

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

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

Keloids and worries

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

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

Yay :)

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

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

Got teeth?

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

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

Pics!

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


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


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


Talk to you all soon!

Biebrich scarlet

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

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

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

*waves.*

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

An article on ameloblastoma, with pictures

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

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

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

Maybe no surgery...but I doubt it

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

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

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

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

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

Yay for girlfriends!

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

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

Reaching out

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

Slacking, worrying and new jobs- oh my!

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

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

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

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

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

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

Depressed

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

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

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

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

Waiting and waiting...and itching

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

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

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

I am SO sorry!

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

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

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

I'll try to be better about updating.

Doctor appointment tomorrow

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

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

I'll update tomorrow...

Blah :(

I couldnt sleep last night.

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

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

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

First bad news in a while...

and I am not sure how to handle it really.

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

But I cant help thinking about it.

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

The good, the bad and the ugly

Some pictures.

My hip scars fading from the last bone graft:


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


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



Me trying to smile- still hard:

Learning to be happy with what you have

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

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

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

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

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

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

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

Great news!!!

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

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

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

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

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

Just wanted to update everyone on my happiness!!

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

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

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

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

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

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

No news is good news?

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

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

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

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

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

New picture and a new worry

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

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

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

Another update..tired of me yet? :)

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

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

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

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

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

All is well- and a before and after

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

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

I am scared

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

Going nuts

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

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

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

Pain

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

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

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



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

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

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

Update

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

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

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

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



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



My leg yesterday (its starting to swell):



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



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

Getting ready

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

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

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

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

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

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

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

Today I almost missed my pre-op appointment.

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

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

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

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

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

Surgery is on Wednesday

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

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

More good news, and a new surgery

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

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

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

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

Great update

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

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

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

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

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

Keep the good thoughts coming everyone!!

A few pictures from Disneyland!

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

Had a bad anxiety attack yesterday

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

Warning: nasty TMI coming up here.

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

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

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

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

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

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

Keep on keepin' on...

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

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

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

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

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



And my hip scars: