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:

Just a couple of pictures

The swelling is coming along nicely. It's still swollen underneath though. The doctor says its an inflammation of the muscle as well, because of the number of times my throat has been cut there. It could take ages to go down all the way. But I do see a big difference. I will update more tomorrow.