Thursday, May 29, 2008

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 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: Photobucket

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. ;)

Wednesday, May 28, 2008

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 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!!

Friday, May 9, 2008


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 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.

Tuesday, May 6, 2008

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?!

Sunday, May 4, 2008

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:


Thursday, May 1, 2008

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.