So Fludarabine didn't cause an problems for me. I grew maybe a tad bit more tired than I already was but nothing too serious. Cytoxin is what messed me up. Even the name of it sounds evil. It is evil. It made me black out and unable to breathe. When the episode of shaking and blackness died down I felt like satan was eating my soul. I felt completely dead inside. I didn't feel like myself, I felt like they had fried my brain and I wasn't the same person that I had once been. This of course was not true. Then next day I was pre-medicated so that those reactions wouldn't happen. I still felt dead inside but I didn't react horribly.
Everything else after Cytoxin does and is sucking. Now I get ATG, rabbit cells. Those are causing horrific reactions as well. Makes you feel like you would rather be dead, it would be so much easier if you were dead because of how terrible these reactions are. My heart was about to blow. not actually but I felt that way. Everything was blurry and was a hard task to grasp. Vomiting as well, but I think I expected that one the most. Chemo is known for vomit and baldness. At this point my cell lines are extremely depleted. My white count is the lowest it has every been, 0. My ANC is 0 but that's been 0 for months now. I need to get platelet transfusions everyday because the ATG kills them off rapidly. I also have gotten three bags of red cells this week, and those take about 3 hours each to infuse. The ATG alone takes 6 hours to infuse. They are truly pushing my body to it's limits. It cool to me that I get to experience this life. I love experience.
0 Comments
This week I turned 18! Kind of scary because that means I am legally an adult. Being an adult is hard, I watched my mom do it and I have no idea how she manages. Especially since she has me as a child and I have a super rare illness. She has to stay with me, two hours away from my 3 younger siblings. She can't work because she is with me, she needs to still provide for my siblings. She is single. I just can't even imagine how awful that would be. All I got to do that was different from before is sign a piece of paper acknowledging that I am receiving blood products. So much fun.
I also started chemo this week. Fludarabine. This is the first time in my life that the toxic liquid has ever come in contact with my body. You don't feel anything instantly. It takes a while to see side effects I guess. But I felt normal and was excited because it means I am much closer to being healthier. It will be harder to deal with everything once I start to feel the side effects.But everyone reacts to it differently so maybe I won't even react. Wouldn't that be lovely! All I can do now is sit and wait and hope I am lucky. If I'm not, then this is going to be a really bad couple of months to come. This week I ate. I ate oreos and cake, burgers and fries. I ate so much food and it is showing. I am 10 pounds heavier than I was, and I do not look cute. I suppose no one cares if you look cute when you're in the hospital, but it's still a shock overtime I look in the mirror. I have been in the hospital for a month now, so we have to change rooms, that's protocol. I don't like changing rooms because then everything feels unfamiliar again. Even though most of the rooms looks exactly the same, I still feel anxious overtime I have to switch. Macbeth is quite an interesting tale. I think most of Shakespeare's work is fascinating. If it weren't for the way it was written I'm sure people should enjoy his scandalous masterpieces. The ideas and thought that went into each play is amazing. I would love to see a modern version, although there are people who have written novels and made movies with the same premise as many of Shakespeare's plays, it would still be nice to watch a modern day interpretation of them. I am glad that I get to read these plays, there are life lessons that can be applied in today's situations, like greed, which has always been here. I have been inspired to write more by reading and watching these plays. I feel that acknowledging them can make you a better person. And I want to be the best me there is. New year new me! Literally. On the 20th I will have a brand new Immune system. I would've already had one but God for some reason decided the time was not right. So due to God's decision I have been in the hospital for an entire month experiencing surgeries and extra things that really I would've lived happily without. My dad and I were talking about my current situation, and I kept saying that it "sucks." Which is totally understandable, I am in a situation that just down right sucks. Even my pastor used the term. My dad however wasn't having it. He kept telling me that I am in a situation that is "challenging." I thought to myself, he simply cannot understand my situation, it sucks. It is not a challenging situation, it is a sucky place to be, challenging is an understatement. AP Bio is challenging, Aplastic Anemia sucks. Then I said it out loud, "this is challenging," and it made my situation seem like something I wanted to overcome despite how hard it is. It made me want to be able to say at the end of this journey that I battled super rare illness and still did well in school. I want to be able to say that I saw this as a challenge and I accepted it. That way of looking at my life motivated me to get things done, not to sit around feeling sorry for myself. To show people that I don't need their sympathy, that if something needs to be done I will do it with a smile on my face and a goal of overcoming whatever cards I am dealt. I believe I can do this. So, I waste a lot of time doing things that could be spent working on something productive. Instead of sitting down with a cup of tea and doing my school work, I decide not to. I want to succeed, I need to be able to say that I did this, that I got my AP classes and did well in them regardless of the fact that I was confined to a small room in DeVos. Chemo has not even started and I already don't feel like doing things. They put me on antidepressants which is annoying, but I guess adding 1 more pill to my morning 8 isn't the worst thing in the world. I don't know how I managed to deal with two lung surgeries within two weeks of eachother. They had to put a tube in me so it could drain my lung of anything that shouldn't be there. They did that twice, and I remember so much pain. But then I realize that the physical pain can be helped with opiates. Only thing that will help my mind is God. He loves me so much. I know I am going to be a great vessel for him. I also know it must correlate with this. But I have no idea what it is. And then I go to place where I think about how God loves everyone but that doesn't mean sick kids don't die. The chances of me doing good after this are pretty high. I know many people who have had bone marrow transplants. And they are normal people again, but a special kind. I met a girl named Megan who had a transplant her senior year as well to cure her luekemia. There was a lightness in the air. You don't even have to talk because you know they get it. I was first embarrassed when my nurse came in to tend to my central line because they were sitting there, and it hit me that they've lived it too. They understand this normal. Plus now I have people that will understand my medical jokes. |
AuthorWrite something about yourself. No need to be fancy, just an overview. Archives
April 2017
Categories |