Wednesday, January 31, 2007

The most horrible news

Today is the hardest day of my life.

I have come to a crossroads where I have to decide. Is the way I look important enough to undergo another extensively evasive surgery? Or do I live with the way my face is forever.

Because that is all I have left. The bone graft is deteriorating. And even worse, they do not know why. In a few short months, everything I have worked for the past 18 months, all the surgeries I have healed from, all the staying at home hiding, all the tears I have cried, all the scars have been for nothing. Nothing! The doctor says I am otherwise a healthy, 25 year old female, never had an infection from one of the surgeries, had strong bone grafted into the site, taken care of my mouth. But it is all going down the drain. And now we have to start all over again. That is, if 'I decide that is what I want.'

In the past it was always 'This is plan A: Plan A is, we get enough bone in and we implant the teeth again. Then we fix your chin.' Plan B was 'We can make you a really nice looking denture. Then we fix your chin.' But both of those plans rely on me having a strong base of bone in my mouth to work with. At this point, even plan B has deteriorated along with the grafts in my mouth, and now I am faced with starting from square one- another 8-10 hour surgery which will take bone from my hip and bits of cadaver bone and graft them into my mouth again, going up through the existing scar on my neck. This means healing from more painful cuts made into the bones of my hip and another slice cut across my neck. The cut across my neck was one of the most painful parts of this whole surgery that I have dealt with, and I just dont know how I can do that again. My only other option was to do nothing. And this means they cannot even fix my chin. No cosmetic surgeon in his right mind will fix the area, if there are no teeth or at least a denture to hold its shape. It will just cave right back in.

How do I make this choice? Every surgery I have faced in the past, the weeks leading up to it I do not sleep. I fear dying. I think of my children. What if I died on the operating table, for cosmetic surgery? How selfish could I be to think of that? But can I live with myself looking this way forever? And if I do the surgery, there is no guarantee. The doctor said this is the last resort, if they do this surgery and it fails, I will be here again another year from now, crying, with new scars just healing and knowing everything I went through was for nothing. If this doesnt work, this is what I will look like, forever.

So, I come to a turning point in my life. Can one really learn to live with a disfigured face and come to love herself for what's on the inside? What is more important. That I am beautiful on the inside and know that I have those who love me despite what I look like? What does it mean to "come to terms" with my face. And how can I start that journey. I feel like it is so far away right now, and I am so lost. Can I learn to love myself looking this way.

So many questions. Too bad I don't know any of the answers.

Heading to the doctors

Trying to keep my head up. Its 6 am and we have to leave in a half an hour, I have been up since 5:30. We have to be at the hospital by 7 for my appointment at 7:30. Reminding myself that this:
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and of course this:
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Make this all worthwhile.

Tuesday, January 30, 2007

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):
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Pregnant with my son, in Jun of 2005, before my surgeries began:
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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:
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My son and I recently; you can see how the bar looks and my chin is mostly just jutting out:
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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:
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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.

Monday, January 29, 2007

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:
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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!