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.

Day 2: Getting ready for tomorrow

Man, I titled this 'day two,' but how many days are in 18 months?? How long have I been going through this? It seems like forever.

Today is picture day. I went through my computer and compiled some pics, I will share a few with you here. I have only been in front of the camera a small handful of times since my surgeries, but feel I should do it more as part of my healing.



November of 2004 (I am in the middle):

Pregnant with my son, in Jun of 2005, before my surgeries began:

This is me with my son in Dec of 2005, 5 months after my first big surgery. This was when I was able to wear a denture and felt *ok* about myself still:

My son and I recently; you can see how the bar looks and my chin is mostly just jutting out:

It is getting harder to keep my mouth closed as my bottom lip sinks in with my chin, and it hurts to purse my lips to shut my mouth, its also hard to smile right:

So.....tomorrow.....phew. Big day. Tomorrow is when we will find out if the bone morphogenic protein did its job and whether or not they can begin the process of reconstruction! This is basically D-day for me. I have waited so long. I have tried not to get my hopes up, but I have nowhere left to go BUT up. I have been getting more and more depressed as the days go by. I just don't know how I will react if I dont have enough bone there yet.

Bascially what I have ahead of me is:
1.) Get enough bone for implants.
2.) Implant my lower teeth again.
3.) Put an implant in my chin to fill it back out again.
4.) Injections along my jawline (it has healed crooked, one side higher than the other) to make it even again.

Each step in itself is a couple of surgeries so I am facing most likely 5-7 more surgeries here once they begin. But I am ready....I hope tomorrow is good news. I will let you know.

Day 1: I decide to blog to save my sanity

I've always been a writer, even majored in English my first couple of years of college. Writing has always been a lifeline for me, I question why I ever stopped, especially when I have been going through so mcuh these past 18 months of my life.

My name is Tina, and I am a survivor.

I am 25 years old, a stay at home mother of 2 wonderful children....But I am not your average stay at home mom, and I do not stay at home completely by choice.

I stay at home to hide.

When I was newly pregnant with my youngest, doctors found an ameloblastoma growing in my jaw. Given the choice to operate and chance losing our baby, or wait out the duration of the pregnancy, my fiance and I (and our OB) chose to wait. During that time the tumor grew to enormous proportions; it ate almost my entire jawbone, all the roots of my lower teeth but two in the back, and basically all the soft tissue in my chin. Two weeks after our son was born I had my first surgery...I woke up with my jaw so swollen it lay on my neck, I could not swallow as the very act caused me to be in blinding pain. I was on morphine for a couple of days in a stupor, unable to see my children and just hating myself. My neck had been cut from side to side to insert a titanium bar shaped like jaw to hold the shape of my face. When I looked in the mirror...God, I don't even know how to describe it to you.

Ameloblastomas have fingers which you cannot see on x-rays, so the doctors had no way of knowing the full extent of the tumor until they were able to get in there. They had had to remove all but 2 of my bottom teeth (I had been told I may lose up to 6, so this was a shock to me) and had to scoop out all of the cartiledge and soft tissue forming my chin as the fingers of the tumor were mixed in there as well; this has caused my chin to sink in dramatically. Also, when cutting my throat, the doctors severed the nerve that controls feeling in my chin and bottom lip so I have no feeling there, and never will again- at least not 'normal' feeling. This means I do not feel food on my face like normal people, dont feel pain if hit there, have difficulties smiling and moving my lower lip, can't kiss, etc.

This was all such a shock to me....since then I have had a few more surgeries, one to try to take bone from my left hip and graft it into the inside of my mouth to try to make a base in which to implant teeth. Doctors were able to get about 3 mm of bone from my hip, which is nowhere near enough, but they did not know until they got back there how small my hip bones were. We waited and waited for this bone graft to heal, in the hope that my body would accept it as its own and form new bone around it. This did not happen and appointment after appointment I was sent home to simply wait....half toothless and hating myself more every day.

My last surgery was in Sept 2006. Doctors were (generously) able to put 3 plugs of bone morphogenic protein in my mouth in the hopes that this will create the desired bone to begin reconstruction. At $5,000 per plug, they literally put all their eggs in my basket! I have been waiting since then at home, hiding and ashamed of my face. This is so new to me as I used to be very attractive and sure of myself. Back in the beginning I was able to wear a modified denture which held the shape of my lower mouth somewhat well, but I havent been able to lately so that it does not rub on the site where the bone was grafted. I quit work back in September and have been home since, as I cannot bring myself to work looking the way I do, and without being able to wear a denture.

This is me, before all of this happened:


My fiance is so supportive and wonderful...he tells me all the time I am beautiful. I could never have made it this far without him and thank God every day he is in my life. He has been my rock, days where I cry over every little thing, take my anger out on him, tell him I wish I was dead, that I hate myself- he has heard it all. He changed my bandages when I was too sore to move, he has seen me disfigured with my head swollen two times larger than a normal person's head should be- but he has never one day gotten angry with me or failed to give me the support and love that I need. I told him once that he had every right to leave me now, and he had never signed up for this and didnt have to stay. He told me right back that I had never signed up for this either and that he loved me unconditionally.

So if you made it this far, I have decided to blog to keep myself sane and to also keep everyone up to date on what is going on with my surgeries. I pray that by the end of this, you will see me restored to normal. Join me on my journey, as I could use all the support I can get!