Wednesday, February 21, 2007


Today I am feeling a bit better about being in my own skin. Of course I haven't heard yet from the surgeons but hopefully I will continue to be on the upswing for at least a little while. I actually did my hair and eye makeup today. I havent worn makeup in almost 2 years now, so it felt nice to do that again. Before, I would put mascara on then go wash it off and cry. Anything that would draw any attention to my face really made me uncomfortable. But today I thought I'd try it again, and it felt good when I looked in the mirror. I feel so encouraged by this, as it's a sign I am making a lot of progress inside.

I have also been trying to get out more, Chris and I make sure to go out at least once on Sat and Sun, each time we do I feel stronger and stronger. Someone told me the more I go out the easier it will get and they were so right. For that time when I am out among others I feel human again, and it really helps to lift my spirits. Just a short time ago it would be agonizing to leave the house and I'd have anxiety attacks thinking everyone was staring at me. The more I go out now, the easier it is to say who cares if they stare? I could look alot worse for what has happened!

Things I need to work on still are: eating in public (I have yet to try this out) and seeing people from my past. For some reason it is much easier to not care when people see me who have never seen me before and don't know that anything has changed in my appearance. I dread seeing people I used to know, and worry about what they will think. What frightens me the most is that they may feel sorry for me and think "Poor Tina, she used to be so attractive" maybe because I think it will make me start to feel sorry for myself again, which I am trying so hard not to do.

Sunday, February 18, 2007

Finding confidence in more than just looks

I never realized how much I always relied on my looks growng up. I was always fairly attractive, barring that ugly duckling stage we all tend to go through in pre-pubescence and early adolescence. I never had a hard time getting guys to ask me out or pay attention to me, could just flirt a bit with the guy behind the counter for a discount or some favors, etc....looking back on it now I do wonder if I ever really knew who I was, in fact, know who I am. Society places so much more emphasis on beauty rather than brains or personality....why is this so? And why as little girls do we grow up thinking this is all that matters. Back then, for me a bad day was a zit on my face or a horrid hair day. In the end, beauty fades and what are we left with? I suppose it's best for me anyway to find who I am now, it was bound to happen one day that I would no longer be attractive, I guess I just imagined that day wouldn't come so soon! So, I'd like to learn to love myself, flaws and myself for whats on the inside. And I'd like my daughter to do the same, and my son. Heres to a lifetime of finding my confidence, based on more than just looks!

Thursday, February 15, 2007

Someone shared this story with me.

Carrot, egg, and coffee

A Carrot, an egg, and a cup of coffee...You will never look
at a cup of coffee the same way again.

A young woman went to her mother and told her about her life and
how things were so hard for her. She did not know how she was going to make it
and wanted to give up. She was tired of fighting and struggling. It seemed as
one problem was solved, a new one arose.

Her mother took her to the kitchen. She filled three pots with water and
placed each on a high fire. Soon the pots came to boil. In the first she placed
carrots, in the second she placed eggs, and in the last she placed ground coffee
beans. She let them sit and boil, without saying a word.

In about twenty minutes she turned off the burners. She fished the carrots out
and placed them in a bowl. She pulled the eggs out and placed them in
a bowl. Then she ladled the coffee out and placed it in a bowl.

Turning to her daughter, she asked, "Tell me what you see." "Carrots, eggs, and coffee," she replied. Her mother brought her closer and asked her to feel the carrots. She did and noted that they were soft. The mother then asked the daughter to take an egg and break it. After pulling off the shell, she observed the hard boiled egg. Finally, the mother asked the daughter to sip the coffee. The daughter smiled as she tasted its rich aroma.

The daughter then asked, "What does it mean, mother?"

Her mother explained that each of these objects had faced the same
adversity: boiling water. Each reacted differently. The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior, but
after sitting through the boiling water, its inside became hardened. The ground coffee beans were unique, however. After they were in the boiling water, they had changed the water.

"Which are you?" she asked her daughter. "When adversity knocks on your door,
how do you respond? Are you a carrot, an egg or a coffee bean?"

Think of this: Which am I? Am I the carrot that seems strong, but
with pain and adversity do I wilt and become soft and lose my strength?Am I the egg that
starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff? Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and
hardened heart?

Or am I like the coffee bean? The bean actually changes the hot water, the
very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavor. If you are like the bean, when things are at
their worst, you get better and change the situation around you.

When the hour is the darkest and trials are their greatest, do you elevate yourself to another level?

How do you handle adversity? Are you a carrot, an egg or a coffee bean?

I'll think of it tomorrow....

Well, lately I have been ok with all of this.....its when I actually think about my next surgery that I flip out. That has always been a thing about me. I am able to partition myself off pretty well. I tend to shut up the things that bother me into a box and only think about them when I am forced to. That is why people have always said I am "so strong"....that is because the things that make me weak I tend to push to the back of my mind.

My favorite book is Gone with the Wind (next to Lord of the Rings of course! Hey, I never said I was cool) and that is because I have always been able to connect with the main character, Scarlet O'Hara. She would not think about things and deal with them, instead, she would push them away if they were painful for her to deal with. Unfortunately, things would catch up with her in the end and, in some cases, things had become irreparably damaged by the time she actually faced them. I dont want to be like that per se, but its often the only way I can deal without losing my mind.

I am still waiting to hear back from the surgeons. Maybe tomorrow. After all, tomorrow is another day...

Monday, February 12, 2007

Make yourself a better person

I am often too hard on myself. I have been a perfectionist since birth. Everything I do has to be perfect. I need things in order, organized, neat and tidy. This goes to all aspects of my life, as far as cleaning, grooming (myself and my children) etc. I often drive myself crazy worrying about things being neat and will drive myself to exhaustion cleaning everything all at once when it just gets to me. I am also hard on myself emotionally. When I make a mistake I berate myself and get angry at myself. When I do something stupid I am the last person to forgive me.

These are all things I am realizing I need to let go to better myself.

If things aren't perfectly neat: its ok, it will get done. If my children get dirty: they will, eventually, get cleaned up. They are, after all, just children. Bad hair day? Oh well. Did something extremely dumb? You are only human- apologize to yourself or others and then let it go and learn from that mistake.

I am learning every day what it means to better yourself. Its whats inside that counts. I am going to make myself a better person.

Sunday, February 11, 2007

I have actually been doing well the past couple of days. I am in a bit of better spirits, although my anxiety has really kicked in again. A few years ago after Chris' father passed away suddenly, I started having anxiety attacks. I actually began to first have them when I was pregnant with Ashley but they went away, and then returned again all of a sudden when that happened. I think it was the fear of the unknown that hit me, like how a seemingly perfectly healthy man can drop dead with no notice. It has made me fear health problems-especially ones no one know about.

So, lately the anxiety attacks have been back with a vengeance, causing me to not be able to sleep, and to be paranoid all the time. I think I will be okay after this next surgery is over, its not even the surgery itself that is scaring me now, its just a matter of getting through it for me. My anxiety causes me to worry that I am going to die all the time, even though I am young. I worry about every tiny thing, and its not normal things that 'normal' people worry about either, like people breaking into my house or things like that. Its 'hidden' things, like brain aneurisms, hidden cancers, and heart attacks that freak me out. I think about them all the time, and I think my worry about surgery is exacerbating it for me. Yet if I can get past this point I know I will be all right. Once the next surgery is over then I can start over again trying to recover and hopefully move on.

On a cheerful note, I am already thinking of recipes for when I am on my liquid diet, which I will be on for at least the first two months after my surgery, maybe more like 4 months (any yummy smoothie recipes will be appreciated!). Its nasty to think of drinking those Ensures all the time, which is what I did last time. But I won't be able to make much of a chewing gesture at all, so I can only eat things that I can just swallow. At least this time I know what its going to be like to recover and can prepare myself better. I dont know if that is more frightening for me, that I know what it will be like, or less frightening since I know what to expect! At any rate, heres to hoping these better spirits will last.

Thursday, February 8, 2007

I watched a show last night on people who have *real* facial disfigurement. After watching things like that, I really am thankful for what I look like. It could be so much worse. People in other countries who get these tumors get so disfigured because they cannot afford to have them removed. They eventually grow up into the brain and kill them. I am so blessed to have had the removal done in the first place. Now, if only we could get this next surgery underway! I have been having the hardest time sleeping. My anxiety is starting to kick in again, and I wake in the night and am just awake with my heart beating out of my chest. Of course this causes me to be tired in the day and grumpy. It's a vicious cycle.

Today I am on one of the peaks of this emotional roller coaster I have been on. Feeling a little better about myself, but still worried about the upcoming surgery.

Wednesday, February 7, 2007

They say everything happens for a reason. Tell that to the person who loses her soulmate at a young age. Tell that to the mom who's baby dies of SIDS one night while he is sleeping. Tell that to the family in the fatal car accident who loses one of their children. Tell that to the woman diagnosed with breast cancer who may not get to see her young children grow. Tell that to the mom who's child is born 10 weeks early and will have everlasting medical problems because of it. Tell that to the family who struggles every day to make ends meet financially, who's children are hungry and dirty and sick.

Everything happens for a reason. What does this mean anyway? Its just too hard to think about what those reasons are. Are we bad people, those of us who suffer? Do we deserve punishment? Are we so content that we have to be brought down a few notches by the Big Guy in order to remember what is important? I'd like to think not. So, why cant the people who are evil, who murder, rape and steal have these things happen to them. Why the good people in the world? I just don't understand it.

And yet still part of me thinks....none of the things above have happened to me. I am still thankful for that, yes. And I should be. I have two perfectly healthy children. I have a roof over my head. We struggle financially but- we make it. My family has love for each other. No one has died. I know I should be thankful for these things I do have and keep my focus there. I'm really working on this.

Last night I was thinking (again). What is the measure of a person? It would be great if it truly was what's inside. It's just that society says one thing but the reality is often something very different. We teach our children its what's on the inside that counts. Yet, when someone looks different people stare. They notice. They judge. Why?

If all things happen for a reason then why did this happen? I pray this is going to make me a stronger person. One day maybe my children will be more accepting of people who are different as a result of all of this. Or maybe one day I will be all fixed and they will look back on this with me and say wow mom, you went through so much. Perhaps this will make us all stronger, in the end. I cannot see it just yet. But hopefully one day I will.

Tuesday, February 6, 2007

Still in a bit of a funk today. Hopefully this will pass soon! I am not sleeping well at night at all, so I am tired and cranky all day. Plus, Ashley has been very wild and oppositional these past couple of days. Aron is getting a tooth in and climbing on everything; he is determined to fling himself off every high surface he can get to in order to see how high my blood pressure can sky rocket before I actually have a heart attack.


Hopefully tomorrow is better and I feel like writing again.

Sunday, February 4, 2007

I am feeling discouraged today, and down. I thought I would feel better reading others' stories, but I have gotten so mad. How come people much older than myself have had successful bone grafts? I am only 25 years old! I never had an infection after any of the surgeries. Taken care of my mouth and myself as well as I can. I just don't understand it. It also makes me worry that maybe something else is wrong with me. I was unlucky enough to get the ameloblastoma in the first place, who knows what else could be wrong. It is also discouraging to know that I will be dealing with this the rest of my life. That it could return at any time later on down the road, after my face is fixed and I have implants even and I could have to start all over again from square one, feel the stress everytime I go in for CT scans to check and see if its back, is just tiring for me to think of. I have been doing so well the past couple of days but not today. What's even worse is I dont want to be bitter. I want to be thankful for others who have had to endure this nightmare and have had good news, even if I myself have not. Maybe I am just not there yet.

Saturday, February 3, 2007

Someone recently shared these kind words with me:

LOVE YOU and those who LOVE YOU.
Better yet, LOVE LIFE and savor each moment.
CONQUER your embarrassment. You are stronger than it is.
PRACTICE kissing... the more you do, the better you'll be at it.
SHINE your light, for it is considerable.

This is going to be my new mantra in life!

Today I am so thankful for my children and my fiance. The night I found out about my bone graft not taking, Ashley looked at me and said "Mommy, I know you are sad. Why?" I said "Because, honey, mommy got bad news about her mouth at the doctor's today." I said "Will you still love me if I never get my mouth fixed or get any teeth?" She looked at me and said "Mommy, you have teeth! See?" And she pointed at my top teeth. Ha ha! Kids are great. I look at my son and think where would I be without him. Although the timing of his arrival into our world was so off, the fact that we chose to wait until after my pregnancy to have the first major surgery was so worth it. I think to myself that God put him here to help me get through this. When I start to hate what is happening to me, start to feel down about everything, just looking at him makes it all better. I know that maybe things would have been easier medically if we had chosen to proceed with the surgeries earlier, but I also know that if he was not in my life as a result, I dont know how I would be dealing right now. My children are my sunshine!

And Chris...what more can I say except that he has been my rock and continues to be. He sent me this email yesterday when I was feeling down:

Hey Queen,

I started feeling down today. I guess it really hit me since I've been apart from you. I just feel really badly that things had to happen this way. I'm not personally going through what you are, but at the same time, it affects the both of us. I just want you to know that I'm in this with you until the end, regardless of the outcome. I still refuse to believe that nothing can be done. If that is the case, however, me leaving should be the last thing on your mind. I love you very much, and just wanted you to know that this doesn't change a thing.

What a man! I couldnt ask for more. Thank God for my family and my children. They are what drives me forward.

Today I am feeling a little more optimistic. I have been reading more stories on the yahoo group for ameloblastoma survivors and my heart goes out to each and every one. When I was showering this morning I started to think (dangerous, I know, I don't do it often). I know when I was younger I used to think man, if anything happened to my face I'd just die, or if I lost a leg or arm I'd just want to die. I cant deny that those thoughts havent crossed my mind at my lowest points since all of this has happened. The loss of a body part or a huge change in one's face like this is forced upon people. No one can see what the future holds. But by the grace of God this could happen to anyone. Once it happens to you, you have no choice but to accept that it has happened. I have wanted to deny what my face looks like in the hopes that it would just get fixed and this is only temporary. However, that may not be so. I may look like this always. How do you come to terms with something that? Honestly, I have no choice but to adapt. Its either accept the way I look or wallow in self pity and fade away. I can't do that, not just as a mother of two, but for Chris, who has been so strong for me, and for myself as well. I have to go on.

Just some random thoughts today.

Friday, February 2, 2007

First, two pictures.

I call this one "Side Views Suck:"
Photo Sharing and Video Hosting at Photobucket
And this one is "What's more noticeable, the zit on my forehead or my sunk in chin?"
Photobucket - Video and Image Hosting

I am in a bit of better spirits today. I had the luck to be pointed in the direction of a yahoo group for people who have experienced ameloblastomas! I felt so human again after reading alot of the posts there. Its good to know that others have been in my boat, not good that others have had to suffer like this but good to know that this thing called 'ameloblastoma' does not have to alienate me from others but can, in fact, give me a reason to relate and comfort those in the same position as I am.

On a more comical note, does my head look excessively large in that second picture, or is it just me! My goodness. ;P
I have had the most wonderful luck to find another ameloblastoma survivor here through I have searched and searched but not been able to find anyone and of course the hospital can't give me any information on others they have treated. He is in a much better place than I, having had his surgery back in the mid 90's. He has had implants since, 2 1/2 years after the initial removal (I am 1 1/2 years from my initial removal, which does give me hope) but has chosen not to have any cosmetic surgery on his chin. I am hopeful that he can help me get to where I need to be again, but he is a busy man and has written a couple of books from his experiences. I emailed him back, and pray this correspondence can only help me get to where I need to be in terms of being comfortable with myself or making decisions as to how we will proceed in future treatment.

Thursday, February 1, 2007

The beginning

Today I am going to start over again by remembering the things I still have, instead of dwelling on the things I no longer have and miss. I am hopeful this will be a good way to start the process of accepting who I am. Regardless of whether or not this next major surgery is successful, this is something I need to do, since this may in fact be the way I will look forever. As I feel I am somewhat groping in the dark, maybe this first step will be helpful for me.

Let's start at the beginning. I am grateful for my family-my foster parents, who took me in when I was 5. They saved me from an abusive father, and a mother whos first concern in her life was herself. They gave me the gift of loving myself, they took me to counseling to overcome what I had been through the first years of my life. When I was first taken from my mom and dad I was put in foster home after foster home. I was separated from my siblings. I remember one family in particular, the family right before I came to Ralph and Gerry's. The mom would make me sleep next to a broken window and tell me that the boogey man came in the night to take all the naughty children from their beds, and I was indeed a naughty child. Why else was I "in the system"? My first morning at Ralph and Gerry's, Gerry made me pancakes for breakfast. I didnt even know what they were called, and when she told me I said "Panty cakes?" Everyone had a good laugh. I knew then I wanted to stay there and was so grateful that after the emergency period of time was over they decided not to send me off to the next foster home.

Because of them I stayed in school, got an education, played musical instruments, went to church, went to camp. Out of my whole family I am the only one who ever went to college, who ever tried to make something of herself. My brothers were in and out of jail and homes. My sister was adopted out. She has spina bifida and I have only met her a couple of times in my life. She was the only one my mother stopped trying to get back, only because she was crippled and my mom didnt want to keep her because she couldnt take care of her. The way I see it, my sisters' handicap was an inconvenience to my mother. She fought to get me back but I wanted to stay with my foster family. I felt stable there but she didnt understand that, only wanting us to live with her because we were her kids, but not wanting to provide the kind of home and lifestyle that is conducive to raising children. She left my life for a couple of years after I went to court and told the judge I wanted to stay with my foster family. I used to call her phone number just to hear her voice on the answering machine. Then one day she waltzed back in and acted like nothing had ever happened. I wanted her in my life so badly that I accepted that and have never asked since why she left without a word. She did manage to get my younger brother back and just recently allowed him to drop out of high school only a few months before graduation.

This was all the beginning of the many blessings in my life to find a family who cared for me. So many children in the foster care system have no one to love them and are moved from home to home. Many, when they turn 18 on their birthdays are kicked out of their homes to live on the streets and try to fend for themselves. Either not knowing their biological families or having ones who dont want them, they struggle until they end up on welfare or living in alleyways, selling drugs or their own bodies to survive and losing their own children to the system. My parents allowed me to break that cycle. I never had to face those problems and neither will my children. My parents let me stay with them until I decided to move out on my own. They let me move back home when my daughter was a newborn and offered to watch her while I went to college and worked. Even to this day they are always willing to take her in for me and watch her when I need them to, and for that I am also grateful. Not many moms have the support system I have in them.

I am grateful for my mom and dad. This is the beginning of my journey in finding myself.

Today my feelings are so mixed. I have mostly decided I will go through with this next surgery, as it is my last resort. I am still very upset. I'm feeling depressed. Hopefully these things will change after the shock of all this wears off. So far, it has not.