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:

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.

Finally

It seems I have finally kicked that sinus infection I had in the butt. I just took my last pill this morning (yay, no more having to choke them down twice a day), so hopefully the bugger doesnt come back in a day or two. Its kinda nice to be able to breathe and go more than 5 minutes without having to blow my nose. I still cough some at night, especially if I go out in the cold air but its nothing like it was before.

I dont go back to see the doctor until February 11th, which is both relieving and nerve wracking. I cant help but be worried that something is going to happen between now and then. My general doctor prescribed me Xanax for the anxiety attacks I have been suffering from lately (all over again), but I cannot take them. I took one two times and it knocked me out cold both times plus made me really moody. I want something that can prevent them from coming on, not something that I take when I feel one starting. It seems by the time it is here the Xanax takes a while to kick in so I have to suffer through the first 10 minutes or so alone. I have small children to care for, I cant be a zombie all day long but I cant keep going on like this much longer. Every little thing makes me paranoid these days. On Saturday we took the kids out for the day and for some random reason on the way home I glanced in the mirror in the car and it *seemed* like my chin was bigger. Chris agrees it looks a bit lopsided but he thinks its the way its healing. I know that is most likely it but I was told that the last time and it wasnt the way it was healing- it was more infection. So I stared at my face all day, felt sick to my stomach and didnt talk much until later that night when I looked and decided it looked 'normal' again. Its really a rough time all around for my emotions these days and I'm tired all the time. I just dont know what I will do if I end up with another infection, I have been strong up until now but there are days (like today) where I wonder if I have anything left to give should more things go wrong.

The other issue I am dealing with is extreme lack of appetite. This has been a problem really since I got out of the hospital at the end of September but its really getting out of control. I have absolutely zero appetite most days. I literally have to force myself to eat something, anything- a banana, some applesauce, bread etc because it will be one or two in the afternoon before I realize I havent eaten, and I never really feel hunger until I am eating, and even then after a couple of bites I am done. This is alarming only because I weigh about 115 right now and do not want to get any smaller. I worry about the state of my graft if I'm not eating right but imagine if you had just eaten a huge meal and then sat down and tried to eat again 5 minutes later. It feels like that when I eat, I am always forcing myself or just eating out of neccessity like a robot. I am continuing to take my vitamins though so hopefully that helps somewhat. I may have to go back to drinking Ensures like a little old lady, which are disgusting but may be neccessary for my health.

So that is what's going on with me lately. Hopefully things stay on a positive note. Thanks to everyone for the continued good thoughts and prayers coming my way. I appreciate them more than words can say.

Pretty good news

At my doctor appointment last week we found out the bone graft is alive and making bone. They took a panoramic of my face again and the difference between last time and this was amazing, you can see where it is filling itself in. It still has so far to go but its worth the wait (probably another 6 mos of waiting or so maybe more). By this time last time we knew things were going to turn out badly b/c there was barely any bone in the xrays and they couldnt tell if it was 'alive' or not b/c there was no filling in happening. Dr Indresano said it wouldnt be filling in like it is if it wasnt alive and well. I am trying not to get my hopes up but its hard after so many surgeries, maybe this will be the one that sticks. On a bad note, my hip is still fractured and aches alot so I have to be careful but that is fine with me, its the jaw I am worried about. Just wanted to do a quick update.

Still alive

I just wanted everyone to know I am still alive. I have just been sick sick sick. Allllll winter. I go a few days between then start all over again. Its rather exhausting, and, as a result, many things end up not getting done...including updates here. I am down to seeing my doctor every other week now which is good and so far no new infections. I'll update again when I know more and when I am feeling a bit better.

Update on swelling

Its going down...ever so slowly.

This is my son and I last night:

Ugh I am getting sick again! I just got over a bad cold that started with fever and chills and then worked its way into major congestion, then all of a sudden it was gone. Then my son came down sick and now he has a majorly croupy sounding cough which I hope doesnt get any worse...Ashley has a cough but its not too bad...and Chris came down sick as well but he seems to be getting over it. Then when I woke up this morning I have this horrible cough and my chest feels all heavy...when I talk too much I lose my voice. *Sigh. I never get sick (none of us do, actually- we're a pretty healthy family normally), so all of this sickness is starting to drive me crazy. I have so much to get done before the weekend is over. My daughter's birthday party is Saturday and I have a lot of holiday things to do as well as personal things, like dentist appointments for both kids and things like that, as well as get my Christmas cards out so they get to people before the first of the year.

I feel so anxious about being sick again, mostly because I just stopped my antibiotic yesterday and I cant help but feel worried about the fact that I am sick again after only a few days of reprieve. I just hope its not the sign of bad things to come.

Update

Sorry I havent posted lately, I've just been so busy- its that time of year! Anyway, I had a doctor appointment this morning. All looks well. I stopped my Augmentin yesterday (oral antibiotic) so I guess we will wait and see what happens. I know my doctor had mentioned he is nervous since I was only off the Zosyn for 4 days when I got that new infection last time so I guess we will see. I am nervous every minute of every day but am trying to just go on. I have dreams that I wake up and there is stuff coming out of my neck all the time too and it makes me restless at night.

My swelling looks a bit the same, the underside where the original infection was looks the same, but that could take a long time to go down because of all the infections. My biggest challenge these days is my appetite. I dont feel hungry, I could go ages without eating. Today it was 1:30 pm when I looked down and realized my hands were shaking because I had had a cup of coffee this morning and no food all day. Then, when I started to eat I was ravenous. I dont know why I am going so long without wanting to eat. Its frusrating, as I know I need to be eating at regular intervals but half the time I am just not hungry at all, and the other half of the time my body isnt telling me its hungry when it is, in fact, starving.

Another new issue is I have gotten so used to being sick that I just cannot think of myself as healthy anymore. Every little thing is cause for alarm. Its enough to drive anyone crazy. Today the doctor said he didnt need to see me next week, but could see me the week after- I asked for an appointment anyway. Its not that I want to go- I hate going every week- its just that I feel like if I make an appointment for 2 weeks away I will jinx myself and something bad will happen to me and I'll end up going anyway. Such is my life, I guess.

So other than that I am trying to take it day by day, and am still choking down those nasty vitamins every night. At this point I will just take not having any new infections, and that is what I am trying to focus on- staying healthy. Anything else good would just be a bonus.

Oh and here is a quick picture of me today (dont mind the shiny forehead- I dont wear makeup):

Not bad news...

So it appears the pus that was in my neck last time and this past time was not bacterial, that is, not another infection- thank God. I discovered for the first time today that pus doesn't neccessarily mean infection- I always thought it did (and it would have saved me a TON of worries and stress if I would have known that before as well, grrr). They said its just mixed in with 'normal' secretions from the neck, I guess I have an overabundance of fluids and it just created a little sac to build up in. So now we are back to just regular wound care, poor Chris gets the brunt of it. Clean the area with the bacitracin (sp?), then flush the wound with saline and pat dry, then pack it with the silver nitrate and bandage it all up again until it heals. Its tedious and annoying but I'd rather have that than another unknown infection any day.

So that was the bit of good news I got at this morning's appointment. I am still extremely wary. Its sad when good news just isnt 'good' to me anymore, because it seems it is ever changing, and tomorrow (or even tonight) could bring about a whole new host of problems which could put me in the hospital. I find its worse on me to get up and up and then the fall seems so much greater when something new bad happens, so I am trying not to feel anything. I am very drained emotionally these days. Yesterday I had crying jags off and on, similar to right after I had my son. It is very tiring to feel so much at once and I find that I dont have much energy at all, yet I sitll have to force myself to rest as my mind continues to go at about 110 mph. I just wish my body could keep up.

They did not do the testing today. They have to make all kinds of arrangments for it as well as try to get my insurance to cover it, and I am not even sure if it will be done at the same hospital (or even if they will even do it if I start to heal finally, who knows). I'll keep you updated on that situation as well.

One day at a time.

More issues

Well, what I thought was a keloid was actually a new pouch of infection. I had it lanced a week ago and it was filled with pus, and for some reason it came back again. They took a CT scan and the doctor said today that there is a tiny ray of light that shines all the way up from my neck to where the graft site is. Whether this is a slow leak of some sort or what we are unsure. So today they ended up cutting the sac open with a razor and letting it drain, aspirating it and then packing it so it will stay open.

It sucks having another open wound to deal with. What sucks even worse is the fact that my doctor wants me to be tested for some weird genetic anomaly which basically would be my immune system not producing enough collagen to heal itself properly. Its some auto-immune disorder but basically could possibly be the reason why I have been having so many issues with my healing (repeated infections, hip fractures, etc) this far out from the original surgery date. I am young and *should* have youth on my side, as well as the fact that I am a non-smoker, and take pretty good care of myself- I am a surgeons dream patient as far as that goes. I pray its not that because if it is then we will be at a standstill as far as my treatment goes and most likely it would be to just try to clear things up and then just stop surgeries altogether. It would also be that all the surgeries I have been going through were for no reason at all, and that is such a huge dissapointment for me that I cant fathom it.

I felt I had gotten to a good place where if this was it and the doctors couldnt do any more for me that I could finally be ok with myself the way I am but I realize that its so much deeper than that. We always hold out hope for the best as humans, even if we say we dont have any. To not have any hope would make you feel crazy when you are in the midst of it all- shreds of hope are what have held my sanity together throughout this whole process. I have always thought that God wouldnt let me suffer like this to just reach a dead end, I felt after he had humbled me enough or whatever his purpose was that he would reward me with the desired cosmetic result. I know I have to hold out until its really over but there is some nagging feeling in the back of my mind that says it already is. Whether its just my slowly built up pessimism towards a positive result or the reality and truth of it all I dont know.

There are times I wonder if this will ever be behind me. I have been so discouraged, especially lately. Just not hungry, depressed, tired...just mostly tired. I'm tired.

Eww

It seems I have developed a keloid where my incision on my neck closed up. I am not sure how I feel about this. One is it's one more disgusting thing about my appearance that I have to accept, and two, I have hopes it will shrink and maybe even go away but there's nothing I can do to make it go away by crying about it *sigh. It just feels like theres always something new to worry about and deal with, but such is the nature of dealing with an ameloblastoma. Will it ever end?

Here's a picture of it, I feel like I should name it since its so big.

"You should shave your head"

Recently I was having a conversation with a friend of mine and she said to me, as so many have said before, "Man, Tina, I just don't know how you have gone through all of this. I think I'd just go crazy if it was me, I just can't imagine."

Its funny, but the first words that popped out of my mouth were "You know what? You should shave your head."

Of course this was met with a big 'what do you mean?!' on her part, and rightly so, it did seem like an odd thing to say at the time. But the more I think of it, the more I like this idea. I think that anyone who really wants to know what its like to go through something that completely alters your appearance should shave their heads- especially women. I dont mean just shave it shave it- I mean like BIC it- use a razor and get a nice, shiny, bald Mr. Clean head. Then go walk around without a hat for a while and see what it's like. This is what I have felt like for the past 2 years. People will stare. Some will point and whisper. Little children will candidly exclaim "Mommy, look at her head!" as children are so very outspoken and honest. The first few days you will be quite embarrassed. You will send your husband to the store for the few small things you need. You wont want to go put gas in the car because you are tired of the stares. You will begin to think its nicer to stay at home and read a book than it is to go walk around the mall for a while like you usually do on Saturday afternoons.

Then, after some time, after you have, of course, re-shaved your head numerous times b/c hair grows back (much faster than jaw bone does I have to say- *wink) you'll start to feel melancholy. You'll start to hate staring at the walls at home, and miss feeling the sun on your face and the wind ruffling your hair. You will start to feel down, so one day, maybe a few weeks later for you (took me about 10 months or more) you decide to go to the store when you are out of bread instead of sending your husband. You are so glad to be back outside among the living that even though people are staring at you all over again, its ok. Its still nerve wracking, and maybe the more blatant ones who dont bother to hide their candid rudeness will upset you a bit. But you are so glad to be back outside that you realize- who cares? My head is bald, but I am still a human being, I still need to go out and do things and be alive. After all, staying indoors and hiding away from the world is not truly living.

This may seem completely out there and over the top, but in reality I think that everyone needs to go through a life-altering change to their appearance like this in order to understand people like myself who have these things happen to them and who's bodies have been changed forever- breast cancers, tumors, amputations, etc. I think the common thought is "I'd just DIE if anything happened to my face!|" I know I myself had thought that up until the time I was diagnosed with the ameloblastoma and even after it was removed. But you know, you realize after a while that it really isnt what is on the outside that counts. We begin to rely on our looks in society so much, especially as women, that we forget to take care of what is on the inside. So when something happens to the outside we become frantic and depressed, we feel like we are less than women who have perfectly attractive, 'normal' faces.

These days I like to think of myself as an analogy for the pottery maker who is making his latest masterpiece. I am a new pot. The embarrassment, the tears and the anger I have felt since the beginning are transforming me into a new beautiful piece of pottery. I was beautiful before, when the Artist first formed me. But I was made out of soft clay. If I was poked with an object, my sides would cave in and I felt pain. I couldnt even hold water because I was too weak. I needed to be put into the fire in order to achieve my true beauty as an individual. The 'new' piece of pottery that I am going to become is so much more beautiful because it has been through the fire and become stonger, it has a shiny glazed outside and a hard inside, it is more useful because it can now hold things like it was meant to.

Still, every day is sometimes a struggle for me and I often feel tired of dealing with all of this but I know it will pass. I like to think of a quote by Anne Frank: "I don't think of all the misery but of the beauty that still remains."

Liberating!

So, tomorrow I get my PICC line out. I only have two doses of the Zosyn left to go, my 2 pm and my 10 pm. Yay!!! I am going to feel so liberated having this out of my arm. I told Chris I am going to shower until I am all pruney and white and wrinkled. Unfortunately, the doctors do not think I am ready to go off antibiotics all together so I get to take these absolute horsepills of penicillin twice a day for another 2 months. But, its will be worth it to be off the IV meds!

My neck wound is ok, the wound is getting smaller and smaller. But it does still drip here and there (do try to control yourselves, I know that is awesome) which sets my anxiety rolling every time it happens. I am really ready for it to close entirely and it seems to be taking forever! My swelling looks down a bit every day so that is good.

I hate to admit this but for some reason I worry that I am not out of the woods yet. Every time something happens I worry that its another infection. For example, over the past week or so I have been getting flushed and my face stays pink and warm for quite a while. I am wondering if it isnt the Zosyn, as the doctor said I had a delayed reaction to it with the itching while it is going in, so maybe it is because it is in my system all day long that every once in a while it makes me flush like that. There is that, and then also the incredible fatigue I have been getting over the past 3 days. It usually hits me around 6 at night, so I am not sure if that can be attributed to the fact that I just wear myself out all day and then just have to lay down or if it means something more. I just cant stop worrying that the infection is going to come back- it consumes me sometimes, and its all I can think about. But I have to take this one day at a time and just hope that I am okay from here on out.

I realized I havent shown my hip scars lately and how they've healed. They are looking good. The scars are still red, but they will fade over time, and all of the bruising is gone. I am really happy with how they look, the incisions follow the line of my hip bone and are very even. When they totally heal I think they will hardly be noticeable. I am going to show pictures from the first day, and the last picture is from today. You can also see how much weight I have lost, hopefully that won't continue or soon I'll look like walking stick person with a big balloon sized head.

It's been a while- updates

Sorry it's been so long but things have been so crazy, between giving myself my meds 3 times a day, lack of sleep, wound care, trips to the hospital, and taking care of kids the past weeks have been a bit of a blur. So I thought I'd give an update for those following along with my story.

Yesterday was a good appt. They ended up taking another panoramic x-ray b/c the dr wanted to make sure that all was well with the graft before he signed off to have my PICC line removed Sat. He was very happy and he said there is still so much bone in there and the graft looks good. So now we are playing the waiting game until probably about April. If all looks good by then (and I can manage to stay infection-free) then we will proceed to the next surgery. I still have at least 4 to go, maybe more but those will all be simpler than this one. One surgery to put an implant to hold the shape of my chin (when the swelling goes down it will cave in again b/c theres no more fat/cartilege in there since they took it w/ the tumor) and they will also have to 'release' my lip. Basically it is pulled in and they have to go in and release it by cutting up the scar tissue that is pulling it inwards. Then 2-3 more surgeries to do the teeth implants if all goes as planned. I dont even care about those surgeries b/c from what I understand they are a drop in the bucket compared to what I have been through with all these bone grafts.

So Friday at 10 pm is my last dose of the IV antibiotics which means they will send someone out on Sat if they can, if not then Mon to have my Groshong removed. Then I can shower again, I am so looking forward to it. The incision in my neck is almost closed, they are having me leave it uncovered now which is kinda yucky (some stuff still comes out of it every once in a while, ew) but I am dealing. They said it will help it to close all the way if its not all bandaged up 24/7. They did one last cauterization yesterday, and I didnt wear a bandage all day. Nothing came out of the wound, and I was so happy and liberated. Then last night I was on the computer and heard something *drip* onto the chair...well, there was some fluid coming out which is totally normal- it is still an open wound but it freaked me out and I started crying. I realized it just brings up memories of the day the infection came to light, where I laid down for a nap and stuff just started running out of my neck. Then I ended up in the hospital and it was all such a nightmare for me, I think I am still traumatized from that experience. I've never felt so out of control of my life as I did that week. So I bandaged myself up for the night and now I am not wearing one today, so hopefully it closes up quickly. I hate having to worry about fluid shooting out of my neck in public (isnt that a great picture?!), its certainly not conducive to making friends :).

That's about it for now. After the PICC line is removed I will still make trips to the hospital twice a week until my wound is closed, then we go to waiting and waiting until we know for sure that the graft has solidifed. I am taking multivitamins and supplements to help my body out with nutrition so it doesnt absorb the graft due to deficiencies in my diet which is still a fluid/soft diet by the way, ugh.

I also sat down and compiled a few pictures which I believe are in order (they were not organized well) that I have taken from the beginning to show the progression of the swelling going down. It still has some ways to go, especially underneath where the infection was, but that will go down too eventually with more time.

No more drama in my life

Ha, yeah right. I am either the unluckiest person when it comes to all this stuff or there is something really wrong with me...yesterday when I was carrying my 2 year old son I started to jog with him across our parking lot (it was raining) and I heard a loud *crack* sound from my
right hip. My hip kinda swung forward and it threw me off balance so I just sat down on the ground, it hurt so bad at first that it took my breath away.

I had to go to the ER and met my dr there. They took X-rays and found that I had fractured along the top of my hip bone. No surgery required but I have to be on bed rest, no weight on that leg and use crutches for six weeks. Ugh. My hips felt fine! They said they had to take so
much bone from both sides for my graft that they are still weak whether they are bothering me or not. I often forget they've been operated on at all. I was just starting to feel normal after my
infection that landed me in the hospital and now this! Ridiculous.

And if I hear one more time "well THAT wasn't supposed to happen" or "that doesnt usually happen," I am going to scream.

So, I woke up today in a fair amount of pain. It was so hard to sleep last night, I could only sleep on my left side because obviously the right side is out, and then when I tried my back the pressure of my body weight bearing on my right hip was too much. Its also so hard to use my crutches that I have just been hobbling everywhere but then every once in a while I will bear down harder than I thought and the pain just shoots everywhere. Its difficult not to be on your feet when you have a little one at home. Ashley is spending the weekend at my mom and dad's again, she only got to be home for 3 days before something else happened. I am going to try to get proficient on these crutches this weekend so she can come home again. I need to be able to get up and down our apartment staircase on crutches so I can get her to school, that's the biggest dilemma. I can get up ok but down is so scary, its a pretty steep flight of concrete stairs and with my track record these days I'd most likely end up at the bottom of it with a crutch sticking out of my eye or something. I have also been feeling so tired all the time, which is not like me, all day yesterday all I wanted to do was sleep. I am guessing its just my body's way of saying it's had enough. It was hard to get up this morning too.

Yesterday Chris said he was telling his boss about everything that has been going on lately and his boss said if he hadnt been hearing it from Chris and know him that he'd think that he was full of crap. Boy I think I have never wished I was full of crap so much in my life and that I will just wake up and this will be the world's craziest dream or something. I guess I just keep saying well maybe our luck is about to turn for the better after all of this. I am, however, seriously considering just putting a bubble around myself like Bubble Boy and living like that. I am sure somehow I'd manage to damage myself anyway.

My son keeps using my cruches as weapons, he will pick one up and carry it around going "Bam! Bam!" I think he's trying to take me out. Here's a picture of him 'guarding' my crutches, every time I need to use them he cries and I have to wrestle them away from him:


That's it for now, I wore myself out! Oh and the swelling looks about the same, maybe just a *tiny* bit smaller. So nothing new to report there.

So begins the waiting game

Not too much new to report, it seems I am entering the waiting territory where we wait and wait until we find out if the graft was successful or not, barring any other complications I may have of course. I now only have to go to the hospital every other day (yay) to have my wound checked. We no longer have to pack it because it is too shallow, so we just have to wait for it to heal itself up the rest of the way naturally. That is nice because now we just have to keep it clean which is easier. I switched to a smaller bandage and dont have to wrap that gauze around my neck anymore- as long as I dont have an allergic reaction to this tape. I had a bad reaction to the tape while I was in the hospital, my neck was all red and irritated and bleeding. So we switched to paper tape which is gentler on my skin. I hope it works because the other is so bulky and uncomfortable.

The swelling looks the same so nothing fun to report there either. At this point I guess it is going to take a while but I cant help but feel impatient for it to go down already. Here I am today:

Well, another good day at the doctor with some confusing news as well. The doctors are very pleased with how my neck wound is healing up and it seems the infection is either 100% gone or going. But today they said I am not considered out of the woods yet because there is no way of knowing...is the infection gone because of the aggressive meds I am taking (the Zosyn) or is it gone because it just is. Does that even make sense? In essence, is the only thing keeping my body from rejecting the graft the Zosyn? So I guess we wont know until 5 weeks from now when I stop the medication if it is going to come back or not. That is disheartening because I had thought that once I finished the Zosyn all would be well and to think that it could possibly come back and my body reject more and more of it is so scary to me. Will I have to be on medication for the whole 6-9 months it would take for the graft to solidify? Is that even a possibility (dont you build up immunity to certain meds over time)? Ugh I dont even want to think about that. So send good healthy thoughts my way that this turn around is because my body is starting to 'like' my graft and not 100% because of the medication alone.

So I still have to go every day this week to have my wound checked and packed by the doctor. The incision is getting so small, Chris said last night it's like trying to stick gauze into a paper cut. I now have a medicated syringe we have to squirt into the wound for the next week or so but hopefully it will be closed up soon so I can shower again! Its too hard to shower with not being able to get two parts of my body wet, if I only have to worry about my arm getting wet it would be so much easier.

My swelling looks the same today. I know its a long road but I guess I am getting impatient. I have lost 11 pounds, and none of my pants fit right anymore. Because of my strict diet it will be almost impossible to gain that weight back again but my goal is to not lose too much more. I am onyl at 119 right now (I was up to 130 before my surgery) so any more could be bad for me health wise. I am also taking a multi vitamin to get my iron and calcium levels up.

That's all for now!

Yay for good news

Well today we got some more good news. The cultures came back from the lab, and the stuff that is still draining from my neck (ew I know) is no longer pus but normal tissue secretions. I feel so relieved because I haven't noticed much of a change as far as drainage goes, I mean its been much less than it was when I was in the hospital but still its coming out. I was worried that I'd have to have my neck cut again because of how rapidly the hole is sealing itself up and the fact it was still draining. So that was relieving to hear, it seems the Zosyn is doing it's job.

My swelling is going down, and I am starting to feel good again. I even went to Target yesterday. Its funny, before this all happened, even after my surgery on Sept. 11th I was scared of people seeing me. I guess maybe after all I went through with my hospital stay and all that it changed my outlook- now I dont care one bit about people staring at me. They can alllll kiss my butt because at least I am not sitting in the hospital! I hope this attitude stays, because that was always so discouraging to find I still cared how people thought of how I look, people I'd probably never see again and who were rude enough to stare. And this time it's much worse, with my neck all bandaged up and my jaw still swollen and this bandage covering my Groshong on my left arm, I kinda look like someone beat me up.

I gave my doctors a bit of a laugh today. Every morning before I leave the house I change my neck bandages just because I like to go out with clean ones on. They have been asking me to bring in 'the specimen' (the bandage with the discharge on it) and I always forget it. Well, today I remembered, so I stuck it in a baggie and found an old Christmas ribbon and put it on top. Then when I got there I told my doctor I had a present for him. They all thought that was funny referring to my nasty disharge-y neck wound bandages as 'a present.' Hey, I still have to have a sense of humor about this. ;P

On a side note, I have been feeling so exhausted with this medication routine. I am super tired because I cant sleep for long stretches of time. I have to set my alarm for 1 1/2 hours before a dose to take the medicine ball out of the refrigerator to get to room temperature. It was originally only one hour before but my vein was getting too irritated with the coldness so now it has to be out longer. So I set my alarm for 4:30 am just to get up and take the med ball out of the fridge, then re-set my alarm for 6 am to take it which requires getting up, washing my hands, using an alcohol prep pad, inserting the saline syringe (which takes forever because you have to do it soooo slow), then attaching the med to my IV line. So then after about 15 minutes I go back to bed, re-set my alarm for 7:30 am since it takes an hour and a half to all go in, and then at 7:30 I have to get back up, wash my hands again, un-attach the med ball from the PICC line, swab it all with alcohol and do another saline syringe flush.

I have to repeat this routine 3 times a day and darn if it doesnt always happen when I want be sleeping! If I try to nap in the afternoon its always around a med time (2 pm) so I cant, then at night my dose is at 10 pm so it doesnt even finish until 11:30 so there's no such thing as going to bed early. Blah. When I think about having to do this for 5 more weeks I swear I want to go crazy. Not to mention I cant remember what it was like to shower like a normal person. I have to wash my hair in the kitchen sink because I cant get my neck wound wet, then I go in the bathroom and sponge off my upper half of my body (cant get my Groshong arm wet at all) and then I run the bath water and kind of crouch in the tub and clean myself that way. I cannot, absolutely cannot take baths. They just disgust me, its like sitting in my own filth and stewing just is NOT getting clean. Cant do it. So that is how I bathe myself every day. I miss showering, because I used to do it at the end of a long day to relax, and I wont see that shower for another 5 weeks. Boo.

Anyway, my left arm is feeling much better, the hot compresses and trying to relax it more have really helped, and the lump that was forming on the side of the vein has gone down. I have also had some weird dreams, I am sure if they are stress related, but last night I dreamed my head surgeon was accusing me of not coming in sooner, and that this infection was all my fault. I think in my heart I still worry about that, and it bothers me.

Here is a more recent picture, the swelling is really going down isnt it?

Groshong is short for STUPID

I am waiting for a nurse to come to my house. My arm that has this Groshong in it is extremely sore and I cant use it much. From what I have read this is not a normal occurence so of course I am worried it is already infected or something stupid along those lines. Its not red or swollen and I dont have a fever which are the signs of an infection but then again my face wasnt red and I wasnt running a fever when I got this whole dumb infection in the first place so what does that mean anyway- obviously my body doesnt work like 'normal' bodies do. The nurse said it sounds like it could be what they call mechanical phlebitis (sp?) which is just like an irritation of that vein and it can be resolved by hot compresses and things like that so I pray thats all it is b/c I swear if they have to take this out and do another one or admit me to the hospital again I will go crazy. Ugh!

Still a chance

Today at the doctor something great happened. My main surgeon decided to take an x ray to see what all was going on with the bone graft. Well...after being left in the room forever and freaking out they came in and said it appears that you have only lost about 20% of the graft. This means that I still have an 80% chance of the graft taking if we can kick this infection soon. I am just amazed, I've been crying and going through all kinds of emotions. Going from there's pretty much no hope in my heart to this is just such an emotional whirlwind for me and I dont want to get my hopes up but still....

So, last night was Chris' first experience packing my neck wound. It went ok, barring the fact that he was extremely timid and afraid to hurt me (no surprise there). But I think he did well. I still worry we arent doing it exactly right, but what else can we do- I cant sit in the hospital for the next few months just to have them do it for me. My doctor is trying to get an at home nurse to come change my neck wound but that would be hard because its twice a day, and my insurance might not cover it.

I also gave myself my first IV treatment without the nurse last night at 10 pm. It went well, and it is really easy. The Zosyn comes in these little vaccum packed balls that look like grenades, so you dont even neeed an IV stand. I can hold it in my hand or put it in my pocket and walk around while I am doing it which is nice. First, I have to take the medicine out 1 hour before to warm it up. Then, I swab the end of my groshong with an alcohol swab, then take a syringe filled with saline solution and get the air out of it by pulling back on the syringe as far as it will go, and then pushing up until one bubble pops out of the tip. Then, I screw it on to the groshong and squeeze about 1/2 inch, then release, then squeeze 1/2 inch, then release until the whole syringe of saline has gone in. That clears the line out, I guess. Then I undo that, swab again with an alcohol pad, and attach the end of the medicine ball to my groshong and flip the release button that lets the medicine flow in. It takes about an hour and 20 minutes to all go in which takes forever but its ok because I only have to do it every 8 hours (6 am, 2 pm and 10 pm). It sounds complicated but its really simple. I hope this gets rid of the infection quickly but still this morning there was a lot of discharge coming out of my neck. There is a worry that because my immune system is basically freaking out that my neck wound is healing faster than it should and there wont be room for the stuff to come out if it closes up entirely before the infection is cleared and then I would have to have it cut again, which I do not want to have. So in a way its like a race to clear up the infection before the wound shuts. Worst race I ever went to.

So thats that today. Still no more pain which is great. I was in so much pain before I went in to the hospital and its nice to not feel that anymore. Oh and the swelling looks the same today- not too bad but not great either.

Here's a picture of my 'Zosyn ball.' The things they come up with these days! I thought I was going to have to wheel around an IV stand or pump or something but its so simple. It basically deflates so when its all done you can see the core of it. Crazy.