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!


stacey said...

Tina, you are beautiful. Never doubt that. Thank you so much for sharing your story.

Janice & Caitlin said...

Wow! You are so strong. I've followed your story but seeing it all in one place is so much more striking. You have been through so much, thank you for sharing. {{{{HUGS}}}

Anonymous said...

((hugs)) Not only do I agree with everyone else but you are also a good writer. You are still a beautiful girl. (-:

Anonymous said...

Tina, I have read many many post from you since BBC, I have read about surgeries and medical appt, but I have never known your story, Im amazed about your strenght and how God have blessed you with your DF and your Children.
Thanks for sharing such an important part of your life.

Karina (karinita's mommy)

Jessi and Finn said...

Tina, I think this a wonderful idea to blog your feelings and your progress. You still look great to me and I pray you find the information you are wanting tomorrow.

bren said...

what a great idea tina, to blog everything you've been through. you write beautifully and i appreciate you sharing your story and the pictures so we can better appreciate what you have gone and are going thru. many hugs to you and i always have you in my prayers girl!

Monica Javier said...

Tina, that is so big of you to share such a personal story with us! It really touched my heart to see what you are going though. You are beautiful and you are an awesome mom! I'm proud of you! We'll be praying for you. Love ya.

Anonymous said...

Thank you for sharing your story... it is not only very brave of you to do, but helpful to others who may be going through the same thing. I'm not sure how I even stumbled across this blog, and I'm fortunate to say that I have never been through this, but it really puts things in perspective for me and I'll remember this the next time I'm feeling bad because I've got a blemish or am having a bad hair day. I wish you the best of luck in your full recovery and just wanted to remind you of how brave you are and beautiful inside and out.

annabelle37 said...

I just discovered your blog, and I think you are incredibly brave for sharing all this. I'm glad you have a supportive husband and family. Also, you're obviously a hottie, swollen jaw and all, and I mean that sincerely. People are more understanding than you might think. Best of luck to you!

aide said...

Hello, also they realised a microsurgery to me of mandibular reconstruction, used the bone of peroné of the right leg, I say to you that I know reason why you happened and that God always is there for giving strength us to follow ahead. Very I am been thankful with my doctor so that it was like an angel for my in this process. At the moment I hope to recover favorably, that with the help of God everything is going to come out well and cheers to me that you have shared your history, is an incentive to leave ahead. God bless you.

Dynamitegal said...

Hi, I have just read your first page and am going to continue to read the rest as I have a 17 year daughter who has been diagnosed with the same tumor 3 months ago and that she has to have half a lower jaw resection which was scheduled for March 2011 but now they have bought it forward to December as it has grown alot. On top of that in the last 2 days we have just found out that she has fallen pregnant and that pregnancy speeds up the growth of the tumor. We don't know what to do,she wants the baby but that decision can cause her serious disfigurment as you well know, so I will continue to read and learn from your experience but would appreciate any guidance from you based on your experience. We don't have much time to make decisions which I'm sure you know what I am talking about. I look forward to hearing from you. From a desperate but 100% supportive mum xox