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.
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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. Behold it is I, procrastination. I keep telling Corinne that there will be time to complete the school work she is assigned, and I know that eventually time will run out. She has accomplished nothing this week. She had surgery this week, a lung biopsy. It was very painful she had a tube sticking out of her side for a day and could hardly breathe. She's had today to recover from it and still managed to get nothing done. In her mind the excuse is that the doctors had to give her benadryl so she wouldn't react to a certain medication they're giving her, but I know that it's just me. I am causing her not to do her work. She doesn't want to do it and I don't blame her, but she needs to suck it up and do it. She hasn't even began transplant yet, they still need to figure out what is in her lungs. It's really hard for her to be here but her excuses won't get the work done for her. I know she just wants to go to school everyday where everyone is doing the work all together and there is nothing else to do aside from the work. It would be much easier that way if she could go but they won't let her leave. She will be here for quite some time now and she doesn't really say how that makes her feel. I would imagine it makes her sad. It would make me sad. She puts everything off and requests more pain meds to push her back to sleep and dilute her pain but the pain cannot be stopped, and not just the physical. I wish there was something I could do for her but I can't, she needs to push through and do this on her own. I have 6 days until I am admitted, I should feel nervous and I feel calm. This week was rough physically, I had surgery on Monday for my port placement, my last day of high school on Tuesday, CT Scans in Grand Rapids on Wednesday which revealed nothing but anxiety aka nodules in my lungs, Thursday I cut my hair off because I need to get used to loss, and today, Friday, I have another procedure designed to further examine the nodules in my lungs. I pictured my last day of high school differently, crying with my friends because this chapter of our lives was over, all the memories and inside jokes. I didn't get that, but I did get kindness and a restored hope in humanity from my teachers. People who haven't known me for longer than three months, that go out of their way to help me.. I can't say this for all of the teachers I've had, but I have had a few back home and a couple here and I am blessed to know them and to have seen their smiling faces on my last day. All good things come to an end and it always paves the way to some kind of beginning, just so happens that my new beginning is my life. I really love disecting the poems of the week, these two were about life after death. It's something everyone thinks about and nobody is quite sure of. If you're a christian then you know Heaven and Hell but you've never been so you can't be prepared for what either fully entail. There are so many things people do in their lives to ensure that their spirit is clean by the time they die, and so many who don't care. Also the new lady who comes and observes the class ended up with my creative writing. I wrote about a fire leaving me with ashes, and she added that we can rise from the ashes. It was quite intruiging really, to see my usual depressive writing be rebuilt into a hopeful piece. I'm on a mission to find joy again. Is it in the form of God or a psychiatrist who will give me one of America's many "happy little pills." I don't know, but I hope Macbeth interests me. Another week away. Great start to the second tri, I guess it portends the rest of my school year. I was looking forward to Thanksgiving as we would be having a christmas party since I wont be here for Christmas, but like everyone should have expected, I got sick. Except this time it was for real. My tonsils were swollen, I couldn't move my neck and had a fever of 102.3. That's the highest it's gone since my appendix rupturing last year. This felt similar to that only minimal pain. Similar in that I asked God to forgive me for my senselessness because I thought I was going to die. A shame that's what made me do it. I made it to Grand Rapids in another ambulance fine. Stayed there for too long and they told me if they couldn't find an oral version of my antibiotic I'd have to stay for two weeks. I didn't cry in that moment, and I was proud. They found an oral version. So I left the next day, having missed my dentist appointment to get cavities filled because I was in the hospital. My doctors set up an appointment with a dentist in Grand rapids, we were all under the impression that I had four cavities that could lead to infection during transplant that I needed filled. The dentist in Grand Rapids said I had none. I don't know if that's God or if it's stupidty. I guess if I die from a gum infection we will know. I'm out now and am waiting for my surgery tomorrow. I get a broviac line placed in my chest. I had one before when I was supposed to have a transplant but they took it out. It's bittersweet because it means no more painful IV's, but it also means more scarring on my chest. An inconsequential side effect that will stay with me forever. I shouldn't care but I do. This encompases my week. This week was filled with more tragedy, not literally, but learning about it. I wasn't here, but I did read Antigone in the hospital and I actually enjoyed it. You would have to have such an imagination to come up with this story, as you would Oedipus. I wish I could have constructed something as amazing as that, but it definitely deepens my thinking process and I feel like a better person because I have read those plays. I went to visit my grandmother this weekend and to see my dog. She is the cutest thing you've ever seen. I didn't feel well on the way up to them but I suppressed it because I wanted to see my dog so much. She lives back in Manistee because she needs someone to take care of her until I can be home regularly to do it. I ended up with a fever and a drive down to Grand Rapids. I came to school on Friday, which I hate doing because it's the last day of the week, what's the point, but it always ends up being worth going. I wonder why I get sick so much often, obviously I know the medical reason but how can it be so easy to catch something that can turn fatal in a small matter of time. Medicine is fascinating when you aren't the person receiving it. Perhaps if this had never happened I would've pursued it, but after being surround by it for years, I've grown tired of it. Maybe that's the reason I should go into it, after all I only know about my problems and others similar to mine. But then I read these plays in class or novels filled with philosophy and I realize how much more there is to life than going to school for 12 more years because that's not what I'm supposed to do. I never want to have to look in the eyes of my patient and tell them their life is ending. I was able to come to school for a little while last week! A day and a half I believe it was. We read Oedipus out loud, together. Mr. Schoenborn explained to us things that might be misunderstood as the text is not written in the most modern fashion. It was enjoyable and engaging. I was displeased when I couldn't return to school and continue participating in that. Tragedy is an interesting topic to be discussing. I was able to look at it in different forms by being in class and learning about it. I learned about the idea that it only appears to happen to famous figures of a certain stature. That their tragedy sets the bar for our tragedies, and we compare what we go through to what someone who is more well known does. I learned that tragedy started off as a theme of a play, it was an act put on to entertain crowds of people. Isn't it strange that we started out having to watch someone suffer to gain the understanding of our own suffering? I wish I could have attended further. Aside from distraction learning, I learned about my transplant. 12 days of chemo, four of which will involve a treatment called ATG where rabbit cells will be injected into my body to help kill my immune system. One of the 12 days will involve total body radiation. Not psyched about that one, not psyched about any of it. I learned that the first week I will feel fine and as time progresses after that I will probably have to be fed via IV nutrition until I feel well enough. Not being able to eat may be the thing that keeps me in the hospital the longest. At first I was scared of potentially coming back to school if I feel well enough and am healthy enough once this is all said and done. I won't have hair, how would anyone accept me, I just moved here, they barely know me, I disappear for months and return bald. What a freak. Then I learned from someone else who had gone through Hell and hating herself because of her appearance that I am not about to go through this and feel bad about myself. I will not literally become anorexic, lose my hair, fight for my life, survive, and then be ashamed of what I look like. Screw anyone who cares what I look like afterwards. I'm going to look like death but I with be filled with new life from my Donor. That is what matters. |
AuthorWrite something about yourself. No need to be fancy, just an overview. Archives
April 2017
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