Monday, October 10, 2011
Google is a great way to relive memories.
So, I just "googled" myself.. just to see what would come up. It's mainly a bunch of really awful times from races I've participated in. Then I get to page three or so, and find a quote from a ten year old me... "It gives us something to do when we're sick of watching TV," said Jackie, 10, of Orland Park, as she sketched a bright green Christmas tree with the computer's mouse. "I like the art programs the best." - yep. this quote is on the internet. It is how I described this sweet computer thing that was rolled into my room while I was a patient for one of my reconstructive surgeries. I forgot that I was even interviewed about the computer thing, until I just read the article. I don't remember what the surgery was for specifically, but that's alright. I am pretty sure that they even played it on the news. LOL, I found another one. This is a quote that the associated press got out of me... one that i wish never happened. This article was about the opening of the new children's hospital in chicago... years ago. "It's just got so much stuff that they didn't have at the old place," she said. "I really love it."- Let me tell you, the new hospital is legit. Sadly, I only spent a day or two there after a surgery. They have 42-in flat screen tv's and mini-fridges in each patient room. Good stuff. Now I'm at a different hospital. It's an alright place. haha. I'm not sure what else to say about these quotes, but I do know that I don't want these to be the last ones. Someday, I'll say something profound and worth repeating.
Disney
Alright, so here is a memory of mine that ties closely into the fact that I had cancer. In 1996, the Make-A-Wish Foundation granted me a wish. This is what I remember.... haha. Two people came to my house and said that I could have whatever I wanted, to an extent. My parents also had to agree with my wish. Of course, my first wishes were pretty sweet, but my dad said, "no way," to all of them. I asked for a 4-wheeler, a trampoline and a pool. I don't remember anything else really. The two people that came to my house were the "wish granters" and they tried to help me pick something really awesome. So it ended up being a week-long trip to Disney World in Florida. I remember being so excited for this trip.. and from what I remember, it was amazing. A limo picked my family up from our house in the suburbs, and brought us to the airport. I got a special button that said Make-A-Wish on it. The week at Disney was a blast. We got to live in this house thing in the make-a-wish village and we were given a rental car for the week. The fridge was filled with hawaiian punch juice boxes and lunchables. That part still baffles me...because the ENTIRE fridge was filled with it! One night, the mayor of the make-a-wish village gave us a visit. This sounds somewhat normal, but the mayor was a person in a giant rabbit suit. I wish I could put some of the video up here..but I am not sure how to get it from a vhs to the interwebs. The rabbit-mayor walked around our house and played with our toys. and then he found my mom's hairdryer in the bathroom.. It was the funniest thing in the world. (especially for a five year old)
I am very grateful for the opportunity to spend the entire week at Disney World. I didn't know that I was in a place where it was very probable that my life was almost over. Everything was great as I grew up... I dont remember being so sick that I might die. I just remember good things mostly. It's strange to look back on. Now whenever I go somewhere that has a Make-A-Wish Foundation fundraiser thing, I donate money.. even if it's just a dollar. I know how much happiness they brought me, and I'm glad that they are still up and running, helping other kids achieve their dreams.
I am very grateful for the opportunity to spend the entire week at Disney World. I didn't know that I was in a place where it was very probable that my life was almost over. Everything was great as I grew up... I dont remember being so sick that I might die. I just remember good things mostly. It's strange to look back on. Now whenever I go somewhere that has a Make-A-Wish Foundation fundraiser thing, I donate money.. even if it's just a dollar. I know how much happiness they brought me, and I'm glad that they are still up and running, helping other kids achieve their dreams.
Monday, August 15, 2011
oh cancer.
This blog really isn't my idea entirely. My good pal Evan came up with the name for it. He told me to write a book about my life, but I guess this blog will do. I'm really not much of a writer, at all. There will many grammatical errors and run-on sentences. I can't stand spelling mistakes though, so hopefully that will be flawless.
Okay, so "Over the Hill at 20." What exactly does that mean to me? Well, obviously it doesn't make much sense at first because "over the hill" generally means that someone is old or in the second half of his or her life. It means something entirely different to me. In my case this phrase refers to the number of surgeries I've had in my life so far. I just finished up surgery number 41...and I'll be 20 years old in a little over a month. When I tell people that I've had forty-one surgeries, they always get this shocked and slightly horrified look on their face. I enjoy that reaction. Maybe I don't comprehend what it really means to have that many surgeries because it's just been a part of my life for as long as I can remember.
I was born with a tumor near my left eye in 1991. I was transferred to a different hospital within twelve hours of being born so that they could do everything in their power to save me. It's pretty insane that I'm still here. The doctors removed the tumor, but it kept growing back. I had a doctor who believed he knew what he was doing, and he had convinced my mother that he had gotten rid of it for good and that I would not need frequent check-ups to see if it had come back. Obviously, he was wrong. My tumor grew for eighteen long months unnoticed. It had continued to be unnoticed until one day when I was three years old. I was dancing in the living room to some music (Grease soundtrack) that my mother had put on, and I fell. I started crying and my mom rushed over to make sure I was okay, as any mother would do. She looked me over and noticed that my jaw was slightly crooked. She then took me to the hospital where they did a scan and found the tumor. This mass had attached itself to several parts inside my head. It had attached to the bone and muscle in the left side of my face, the optic nerve, and part of the cochlea in my left ear. The extent of the damage wasn't shared with my mom at first. My doctor that had given me a clean bill of health had his secretary call to inform her that the tumor had grown back, but that there was nothing he could do about it and she would have to find someone else to take care of it. At this time, my father had just switched jobs, and my parents didn't have insurance because of that.
My mom searched for another doctor to take my case and met with an oncologist. I was finally diagnosed correctly. I was born with Juvenile Aggressive Fibromatosis. Lots of big words. haha. I've tried to find things online about this disease, but there never seems to be anything. I can't even find my own case files from journal studies. Anyways, this means that the tumor in my face acted like a cancer and destroyed whatever it came in contact with. However, the tumor is not malignant, so it doesn't spread to other areas of the body. (Or at least that's what I understand of it) The plan of attack against the tumor involved surgeries that could have left me completely blind and/or deaf. My surgeon had to remove my left eye and my optic nerve because of how the tumor had attached to them. No one had known that the tumor was attached to the cochlea in my left ear. They found out afterwards when I tried to talk to my grandma on the phone and couldn't hear her when I had the phone put up to my left ear. After that surgery, I had to learn how to walk again and everything, because of how I was seeing everything differently and because of the deafness in my left ear. I don't remember this at all, but my parents have told me about it quite a bit. Also, just a sidenote, my vision in my left eye before was pretty bad. There is only really the possibility that I saw nothing more than shadows. Other than that, I know that I hated being in sunlight, and that one time the doctor wanted to know if I could see, so he put an eyepatch over my good eye. I walked into things. haha, so there really wasn't much sight in my left eye. I guess back to the story of my life.... after the tumor was removed, I went through a round of chemotherapy at the age of four. I have a few memories from this, but only bits and pieces. I remember that I got really upset because this artist guy drew me and my brother playing basketball because he thought I was a boy. And the other memory was that I got super sick and couldnt even keep down a freeze pop. My mom drove me to the hospital, and I took a nap, drank some apple juice, and then felt better.
The worst of the battle was over. I had defeated the tumor and it never grew back (at least not yet, and it's been about 15 years) Since then, I have been undergoing reconstructive surgeries to rebuild the left side of my face. I have a prosthetic eye. It's made out of plastic of some sort and yes, I can take it out. I've always wanted to take it out on halloween and be a kickass zombie. I'm just afraid that I'll actually scare people. haha. There have been some set backs over the years. Sometimes things don't go as planned, or infections ruin progress. For the most part I'm used to it. I think the biggest disadvantage has been that I haven't really gotten a job because I'm always scheduling my surgeries for the summer, so that school isn't interrupted.
This summer, I had my 41st surgery. My doctor broke my jaw in six places and moved things around. The recovery was a bit difficult, especially the first week. The swelling made it hard to breathe, but once that went down things were better. I was afraid that I would die in my sleep from not being able to get enough oxygen. I'm glad those worries are over. =] My jaw was wired shut for four weeks. I lived on smoothies, soup, and shakes. I could only have really thin ones since my jaw was wired. I wasnt allowed to use a straw because I had stitches all over the place in my mouth and the suction would pull them out. Overall, I lost nine pounds...which wasn't a good thing, but it could have been so much worse. I had a splint between my upper and lower teeth for seven weeks. Once that was out, I could eat whatever I wanted! Oh the joy that food can bring! I ate so much for the next couple of days. Not because I was hungry, but because I wanted it. haha. It was definitely worth it. My face looks a lot better than it did earlier this summer. I've still got a few more surgeries to go to improve a little bit more. Also, just a sidenote: I don't think I'm ugly. I actually enjoy looking at myself in the mirror.. I might even be conceited. ;-) haha. This story of course, is just one part of my life thus far. There is so much more about me and countless experiences that have shaped me and continue to do so.
Okay, so "Over the Hill at 20." What exactly does that mean to me? Well, obviously it doesn't make much sense at first because "over the hill" generally means that someone is old or in the second half of his or her life. It means something entirely different to me. In my case this phrase refers to the number of surgeries I've had in my life so far. I just finished up surgery number 41...and I'll be 20 years old in a little over a month. When I tell people that I've had forty-one surgeries, they always get this shocked and slightly horrified look on their face. I enjoy that reaction. Maybe I don't comprehend what it really means to have that many surgeries because it's just been a part of my life for as long as I can remember.
I was born with a tumor near my left eye in 1991. I was transferred to a different hospital within twelve hours of being born so that they could do everything in their power to save me. It's pretty insane that I'm still here. The doctors removed the tumor, but it kept growing back. I had a doctor who believed he knew what he was doing, and he had convinced my mother that he had gotten rid of it for good and that I would not need frequent check-ups to see if it had come back. Obviously, he was wrong. My tumor grew for eighteen long months unnoticed. It had continued to be unnoticed until one day when I was three years old. I was dancing in the living room to some music (Grease soundtrack) that my mother had put on, and I fell. I started crying and my mom rushed over to make sure I was okay, as any mother would do. She looked me over and noticed that my jaw was slightly crooked. She then took me to the hospital where they did a scan and found the tumor. This mass had attached itself to several parts inside my head. It had attached to the bone and muscle in the left side of my face, the optic nerve, and part of the cochlea in my left ear. The extent of the damage wasn't shared with my mom at first. My doctor that had given me a clean bill of health had his secretary call to inform her that the tumor had grown back, but that there was nothing he could do about it and she would have to find someone else to take care of it. At this time, my father had just switched jobs, and my parents didn't have insurance because of that.
My mom searched for another doctor to take my case and met with an oncologist. I was finally diagnosed correctly. I was born with Juvenile Aggressive Fibromatosis. Lots of big words. haha. I've tried to find things online about this disease, but there never seems to be anything. I can't even find my own case files from journal studies. Anyways, this means that the tumor in my face acted like a cancer and destroyed whatever it came in contact with. However, the tumor is not malignant, so it doesn't spread to other areas of the body. (Or at least that's what I understand of it) The plan of attack against the tumor involved surgeries that could have left me completely blind and/or deaf. My surgeon had to remove my left eye and my optic nerve because of how the tumor had attached to them. No one had known that the tumor was attached to the cochlea in my left ear. They found out afterwards when I tried to talk to my grandma on the phone and couldn't hear her when I had the phone put up to my left ear. After that surgery, I had to learn how to walk again and everything, because of how I was seeing everything differently and because of the deafness in my left ear. I don't remember this at all, but my parents have told me about it quite a bit. Also, just a sidenote, my vision in my left eye before was pretty bad. There is only really the possibility that I saw nothing more than shadows. Other than that, I know that I hated being in sunlight, and that one time the doctor wanted to know if I could see, so he put an eyepatch over my good eye. I walked into things. haha, so there really wasn't much sight in my left eye. I guess back to the story of my life.... after the tumor was removed, I went through a round of chemotherapy at the age of four. I have a few memories from this, but only bits and pieces. I remember that I got really upset because this artist guy drew me and my brother playing basketball because he thought I was a boy. And the other memory was that I got super sick and couldnt even keep down a freeze pop. My mom drove me to the hospital, and I took a nap, drank some apple juice, and then felt better.
The worst of the battle was over. I had defeated the tumor and it never grew back (at least not yet, and it's been about 15 years) Since then, I have been undergoing reconstructive surgeries to rebuild the left side of my face. I have a prosthetic eye. It's made out of plastic of some sort and yes, I can take it out. I've always wanted to take it out on halloween and be a kickass zombie. I'm just afraid that I'll actually scare people. haha. There have been some set backs over the years. Sometimes things don't go as planned, or infections ruin progress. For the most part I'm used to it. I think the biggest disadvantage has been that I haven't really gotten a job because I'm always scheduling my surgeries for the summer, so that school isn't interrupted.
This summer, I had my 41st surgery. My doctor broke my jaw in six places and moved things around. The recovery was a bit difficult, especially the first week. The swelling made it hard to breathe, but once that went down things were better. I was afraid that I would die in my sleep from not being able to get enough oxygen. I'm glad those worries are over. =] My jaw was wired shut for four weeks. I lived on smoothies, soup, and shakes. I could only have really thin ones since my jaw was wired. I wasnt allowed to use a straw because I had stitches all over the place in my mouth and the suction would pull them out. Overall, I lost nine pounds...which wasn't a good thing, but it could have been so much worse. I had a splint between my upper and lower teeth for seven weeks. Once that was out, I could eat whatever I wanted! Oh the joy that food can bring! I ate so much for the next couple of days. Not because I was hungry, but because I wanted it. haha. It was definitely worth it. My face looks a lot better than it did earlier this summer. I've still got a few more surgeries to go to improve a little bit more. Also, just a sidenote: I don't think I'm ugly. I actually enjoy looking at myself in the mirror.. I might even be conceited. ;-) haha. This story of course, is just one part of my life thus far. There is so much more about me and countless experiences that have shaped me and continue to do so.
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