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| xenith >> editorials >> living with leukemia |
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Living With Leukemia by Amanda Smith If you ask anyone around here they will tell you that having a strong, positive attitude has a lot to do with getting “cured.” But I know that that isn’t true because cancer doesn’t care about what you look like or how you feel about what’s going on inside you. I should know. I have cancer. To me Leukemia is probably the hardest cancer to fight off because it’s in your blood and once it’s there, it’s there for the long haul. I decided to write this story because no matter what you have seen or heard you will never know how it feels to have Leukemia. After reading this you still won’t know exactly the way it makes me feel, but you’ll have a better idea and maybe it will help you to see things in my perspective. A lot of times I might do or say something that you may not understand, sometimes even I don’t. But just let me go on record and say that everything I do and say has a reason--okay, maybe sometimes not a very logical reason, but a reason all the same. I don’t have a particular example on hand, but just keep in mind that it’s always necessary to keep an open mind when you’re around me because I’m pretty unpredictable. It didn’t always used to be like this. Before November last year, all I really cared about was having a lot of friends to be accepted by and make my way through school with decent grades. I’d say that’s pretty much what every 13-year-old wants when it comes down to it. You know how everyone is always looking for some action in his or her lives? Well, I was too, but you never expect anything dramatic to happen to you, you just hope it does, until it does, and then you wish you could take it all back. But you can’t take it all back and neither can I. Living one day as a supposed “healthy kid” and waking up a week later in the PICU (Pediatric Intensive Care Unit) of Shands Hospital is about as big of a reality shock as they come. Before any of this I had never even been to a hospital; now it’s like second home, only without the home part. I don’t remember much about my first night’s experience or the rest of that week, but from what I hear it wasn’t pretty. I do remember coming to Gainesville from my house in Summerfield after getting some weird blood test results from my doctor. We’re small town people so we didn’t know too much about what any of the results meant, so we weren’t too worried. We just followed the doctor’s instructions to visit a Hematologist (blood doctor) here at Shands and he’d fix us up. At this point I wasn’t too scared because I just didn’t know enough about the situation to be worried and neither did my parents. So, after being admitted, my first taste of what was to come was when they went to start an IV that took poke after poke after poke because I was so dehydrated. Okay, getting to the point, my blood counts dropped so low that I passed out. That’s pretty much it for me until I woke up in the PICU the next week, still oblivious to why in fact I was there in the first place. I finally found that I had AML (Acute Myeloid Leukemia) a couple days later by one of my many attending Hematologists, Dr. Graham-Pole. The way he explained it was that I had a bunch of extra cells. I remember him telling me that they weren’t bad cells, just wrong. I don’t know why I remember that but those were his exact words. Anyway, these “wrong cells” were crowding my bone marrow and so my good cells didn’t have any place to go. Then he gave me like a 30-second crash course on Red Blood Cells, Platelets, and White Cells. Sure, I’d heard of them before but they didn’t mean much to me. What really gets me, and I still think about this like everyday, is that he told me that I would be in the hospital for weeks. Not days, not months, but weeks. That was in November…it’s May. I was still a little groggy when he was telling me all of this. I mean, hearing that is a lot for anyone to swallow, but I guess in some weird way none of what was going on seemed real. I could feel the IV in my neck and the tube down my throat, but I still half expected to wake up in my bed and everything to be okay just like it always had been. Or maybe I didn’t really believe that, I just hoped. I know in the movies when people come to their senses about stuff like that how they just all of a sudden break down into this big ball of emotion and it all comes pouring out. Well, it’s not really like that. Not for me anyway. It never really sunk in that I had Leukemia or I could die--it’s just a fact that you learn to live with. I mean, what other choice do I have? It really hit my Mom hard though. Moms are always emotional when it comes to major health issues with their babies but she was just plain depressing to be around. You always worry about protecting your child from strangers and rapists, but how can you protect your child from Leukemia? You can’t. No one can, and it’s not like I didn’t feel bad enough just being there in that position without having her crying and making me feel even worse. I knew the prognosis couldn’t be too great because before any of this happened nobody ever visited me or made special arrangements just for me and while I was in the hospital everyone was there. So that made me pretty nervous. I’d have to say the coolest person out of everyone was my Dad. I know it must have been really hard for him to be there and see me like that because blood and stuff like that really freaks him out. And trust me, there was a lot of blood. But he would just come in and sit down and watch T.V. and not say anything to me. That really made me feel like everything was going to be okay. Well, maybe not so much okay, but it did provide a temporary sense of relief that something was still the same even though everything else was changing. I was so glad the first time I got to come up to the kids’ floor from the PICU. That’s where I am now and if nothing else happens, it’s where I’ll stay. It’s much less scary here. Down in the PICU everything is so medically sound and sterile, here you can actually relax a little more because there are colors and smiles and it’s more sugar-coated. It’s still not the same, though, because even though there are people here who are going through the same things as you are, everyone’s story is different one way or another, and most people are just too wrapped up in their own troubles to take the time to listen to what you have to say. I guess it feels better to let people know what you’re thinking. Some people think it helps to just let everything go. I’d rather listen to what people aren’t saying, because someone could ramble on and on to me for hours and not really say anything. No one knows exactly where it comes from or how you get it. I’ve read some theories online but it is mostly a lot of DNA stuff that might as well be in Spanish because only doctors can understand it. I often think about the time and place where I contracted my Leukemia. We know that it was probably sometime in August because doctors predicted that I had had it for about 3 months when I got here. I think that if I could have just avoided going to a certain place at a certain time maybe none of this would have happened. But I don’t beat myself up too bad about it because I know that there was no way for me to know and no way I could have prevented myself from getting it. I don’t know exactly what it is about this place that really gets to some people. I know that it’s hard to see anyone sick and small--children especially. I don’t really understand how you could be a doctor and sit in a room with a two year-old and tell them they have a disease that may or may not kill them in a matter of weeks, months, or years. It breaks my heart over and over again to see all the little tykes that aren't quite sure why nurses poke them or why they have to take nasty medicine that makes them feel bad. I mean, it’s hard enough for me to be here and I know why I’m here. But I will say that little kids are the most amazing people to talk to. I’d rather have a conversation with any toddler here than the smartest adult in the world because they are so open-minded. Let me give you an example. A couple weeks ago, I was released for a week (big shock, I know) and I was at my Uncle’s House coloring with my four year-old cousin. She was drawing pictures of people and I pointed to a stick figure she had drawn of a girl with long blond hair and blue eyes and I asked her who it was. She just looked up at me and said, “You.” And went right on drawing. Now, everybody knows that when you get chemotherapy your hair falls out and I’m no exception the rule, but she chose to draw me as she has always remembered me looking. Maybe it was just out of habit, but either way, it really made me think. One thing I really have a hard time with is people that stare. I know that before if I saw someone wearing a mask, with an IV hanging from the bottom of their shirt, I would probably stare at them too. Maybe just out of curiosity, because seeing someone like that makes you wonder what happened to them, but of course you never ask. I had no idea how much it hurts people when someone does that. But at the same time, I can tell when someone is purposely not looking at me and that hurts just as much. So I guess what I’m trying to say is that I wish people would confront me with questions but not feel sorry for me at the same time. Sometimes when I’m out just walking around old people will come up to me and apologize and say things like “I’m so sorry” and I’m like “For what?” It’s not like they did any of this to me and I don’t see what the big deal is. I don’t feel bad for me, so why do you? All my life I’ve always been “the independent one.” I’ve always had trouble accepting help from other people because I just feel better when I can do things for myself. It really hurt my pride a lot when I was so sick that I couldn’t get up to use the bathroom on my own and had to be lifted on to the bed pan by a nurse or my Mom or whoever happened to be watching me at the time. I especially hated when nurses had to give me baths in my bed. I felt like I had no privacy and, actually, I didn’t. Now I know why old people hate nursing homes, because they are treated like babies and even have to wear diapers. Although I’m pretty much back to my normal, independent self, I still feel like a constant bother to my family. Like they can never really enjoy anything like in the old days because someone always has to make sure I’m as comfortable as possible; I just feel like an overall pest to everyone. I know I’ve spent most of my time griping about the whole ordeal, but there is some good in all of the bad. Like if none of this would have happened, I would have missed out on meeting a lot of great people. I would have gotten to be in school, but I would have missed learning a lot of cool medical stuff that I’ll definitely be able to use in later life experiences. I also think that my thought perspective has grown a lot since I’ve been here and I have a broader outlook on life. Sure, I think about relapse all the time and I worry about being thirty and going to the doctor for a check up and finding out that it’s back and reliving the whole experience. That absolutely terrifies me, but, if that ever does happen, I’ll know what to expect and I’ll be ready for round two.
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