First a little background: My second cycle of chemotherapy is scheduled for this weekend. The plan was to have my doctor appointments, blood draw, and Rituxan infusion as an outpatient on Thursday, come back to East Lansing for my semi formal Thursday night, and go back to Ann Arbor to start the chemotherapy inpatient Friday morning.
My day was fine until I got a phone call during my class at about 2:30. It was a nurse from U of M. She left a message saying that there would be a slight change of plans for my next treatment. I was immediately filled with anger knowing that this probably involved me having to miss my semiformal. I returned her phone call, and she told me that if I weren't admitted until Friday, since it takes 24 hours until someone is available to put the PICC line in from when you're admitted, I wouldn't be able to have the PICC put in until Saturday, and that the people who do that don't work on the weekends. She then told me that we should plan on my admission being postponed until next Tuesday. There is only one problem, my birthday is next Friday and there was no way in hell I was going to be in the hospital on my birthday. I told her I would rather miss my semiformal than be in the hospital on my birthday, so I'm now being admitted tomorrow and missing my semi. You may be thinking, okay, no big deal. No. Big freaking deal. These are the years that people describe as "The best years of your life." Your twenties are the years that you are the most healthy, the most beautiful, and have the most fun. Well, I guess that's just not the plan for me. I sit back while everyone around me can experience college and all the fun it ensues while every fun plan I've tried to make thus far falls through. Yes, this is only temporary. I will come out of this. But this is happening during a time that I will never get back. Cancer is taking that experience away from me. I hate it. I hate that this is happening to me. I don't understand why this is happening. I would do anything to make this go away. I struggle to hold on to the positive things. It's hard to stay positive when everything I plan, everything in my life that I look forward to falls through. It looks like there is going to be many dark months ahead of me unless this gets better. The only thing I can plan on any more are doctor appointments and hospital visits. If I've learned anything so far, I've learned that there's going to be ups and downs. Today is definitely a down, and it's pretty shitty down.
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Although I wish it weren't because of these circumstances, through this I have learned how amazing people really are.
People I hardly even know have reached out to me, offering their positive thoughts and well wishes. People who I've never even met have sent me care packages and things to make my days a little brighter. The people that are close to me have gone above and beyond in being there for me and caring for me. These acts of kindness often bring me to tears. It's amazing how selfless and caring people become when bad things happen in others lives. I wish we could all experience what it's like to be loved and cared for to this extent, even when there's nothing bad happening in our lives. Random acts of kindness are often few and far between. We truly take each other for granted, and we don't show just how much we care until things get a little messy. We should change that. I have realized that I've been caught in a whirlwind of negativity. It's easy to lose yourself in the bad things. For some reason, they weigh so much more than the good things. Why do we do this? Why do we tend to focus on only what is bad in our lives, when there is so much to be thankful for?
An amazing thing about the U of M Health System is that they believe you must treat the mind, body, and spirit when going through something like chemotherapy. When I was in-patient at the hospital, I had multiple people coming in my room every day with crafts such as coloring books or jewelry kits, and there were even people who gave me tips about how to "heal my spirit." Among their suggestions was to keep a journal solely for the things that make me happy every day. They suggested finding one good thing every day that makes me smile or brightened my day, and to keep it in a specific journal just for the good things. This is something that people should do every day even if they aren't going through treatment. You don't even have to keep a journal, just simply thinking about something you're thankful for can change your mindset so much. Yes, cancer sucks. And it's something that sometimes drowns out all of the good things in my life. It's healthy to acknowledge my frustrations, but I am not going to let cancer put everything I'm thankful for in a huge, dark shadow. Some things that make me thankful every single day are... 1. I attend the most awesome university in the world 2. I have the most amazing support system of friends and family that I could ask for 3. My puppy is freaking adorable and brings me so much joy This doesn't even begin to cover all the great things about my life. When I stop to think about them, it makes such a difference. I have not known fear until I was told I was neutropenic.
Neutropenia is a common part of the chemotherapy process. After you receive treatment, your white blood cell levels rise extremely high, and then they drop to almost nothing. This is apparently the goal. When your white blood cells are wiped out, your bone marrow creates new blood cells, and hopefully this time they are healthier. The normal white blood cell count ranges from 5-10. Right now, my white blood cell count is 0.2. Less than one! I literally do not have an immune system to fend of any disease. The doctors said something as simple as going to the grocery store could be fatal. (Wow that sounds dramatic). This is extremely scary for me. When I walk around I have this crazy feeling of vulnerability. Like any little simple germ could get into my body and send me back to the ER (for the third time this week). Since I can't be in public places, I can't go to class. But I discovered this awesome thing called "Zoom MSU" which is apparently free to all MSU students. My friends in my classes have been able to video conference me so I can still attend class from home! (Shout out to Sasha, Brittany and Elizabeth, you guys rock!) I want to graduate this May. I don't want to drop any of my classes.
I will graduate this May and I am not dropping any of my classes! I will keep saying this and I will do it. It doesn't matter how many times I say it, almost everyone looks at me like I'm crazy. For some reason, it is almost everyone's first reaction to try to convince me otherwise. But there is a point when you need to put aside your own ideas, listen to me, and just support me. I am getting so sick of defending myself and explaining myself. I have worked so hard for the past 3 years to be on track. I've taken many summer classes and done everything to prepare me to graduate in May of 2017. It's almost like it's not an option for me to change this. I know I just wrote about living in the moment, but this is a plan I just can't shake. In all honesty, the only thing that has kept me sane so far is the distraction of school. This is the only normal thing I have left to hold onto. I could not imagine waking up everyday without something driving me. I can't live the next few months with the only thing on my mind being Lymphoma and surviving it. Studying in the hospital passes the time. Walking on campus for the first time after I got out of the hospital made me feel so at home and so normal that I almost cried. Sure, adjustments will have to be made. When you don't have an immune system its not a good idea to attend college classes let alone first grade classes for placement. I'll figure something out, but I will graduate this year. I ask for your support and if you don't believe in me don't say anything at all. Sorry if that sounds sassy but that's how it is. You hear it all the time.
"Just live in the moment." For me this is near impossible. Before my diagnosis, it was absolutely impossible. Simply out of the question. I never had to force myself to live in the moment, although it would've made my life a lot easier. I'm such a planner it hurts. And the stuff I like to plan and obsess over the most? Well obviously it is the stuff that I can't control. So picture having this personality trait and then being diagnosed with cancer. I definitely had to adjust. In this past month alone, I had so many things planned. My planner was filled to the brim with events and things that I planned to do. For planners like me, there is no backing out. Once it's in the planner, it's happening and that is that. Each of these things were in my plan, only for the day to come when I can't get out of bed. The amount of things I have cancelled, the amount of classes I have missed and people I have backed out on is absolutely killing me. Almost every single thing I planned has gone out the window. This is when I realized I need to change. I can't keep living my life in disappointment with myself. I realized that I need to adjust my life to accommodate my new normal. This is when I started to experience the true meaning of living one day at a time. If I wake up and feel great, like I did today, I get stuff done. Today I took my license picture at the Secretary of State for my ID renewal (21 woo!) because who knows when I'll feel like getting ready again. When people text me and ask if I can meet up for school projects, I tell them I'll let them know when I can. I encourage you, especially if you are an obsessive planner like me, to live in the moment. One day at a time. It's surprisingly refreshing. :) Blogging is never something I thought I would do. I do enjoy creative writing, but I never had a reason or a purpose for a blog. When I was diagnosed, I found my purpose and I ran with it!
The main reason I wanted to blog in this case was to maintain this sense of normalcy. After my friends and family found out about my diagnosis, I felt as though every conversation was centered around cancer. I appreciated their concern, but I found myself repeating the same things and losing that sense of normalcy I felt before. It was as though I had become my diagnosis, and that was all we could talk about. Thanks to the blog, these constant updates can be followed along as they're happening, so when I see my friends and family, we can talk about the "normal things" again. Like Sparty's sad excuse of a football game last Saturday, or my midterm exam coming up this week. Also, I have found that my posts are surprisingly relevant to lives that are not directly impacted by cancer. We are all facing something, and when we face something tough, we can make choices on how to respond. I have already found that without thinking, I often reframe or taking a negative situation and turn it into a positive. Reading about these little experiences will hopefully help you as much as it has helped me. On another note... Happy Tuesday! I will be released tonight and will be returning to the land of green and white tomorrow morning. Woo! One cycle down, five to go. As the eight o'clock hour was slowly approaching, I thought to my self how I could possibly make it through one more day of this. At eight, I would receive my least chemotherapy bag (which lasts 24 hours) for this first cycle. The first few days had gone okay, but today I just felt different. I felt more fatigue, I wasn't as hungry, and my overall motivation to get up or do anything was just lacking. I couldn't imagine one more whole day of this.
That is when some of my closest friends piled my door right before eight. The feeling I got when they walked in was a new energy and an overwhelming sense of love. From that point on, my night was turned around. That's just the final push I needed to get through this last day. There's just nothing like being with your closest friends. Thank you to everyone, friends and family, who has visited me through this first cycle. You have no idea how much your mere presence means to me. If I've learned anything about my multiple stays so far at the hospital, I've learned one thing: there are good nurses and bad nurses. And there is absolutely no in between.
**I do appreciate the work of any nurse. I'm not trying to sound like an ungrateful brat. I understand that it truly is a hard job, but you'll understand why the "bad" nurses deserve the name by the end of this post. These bad nurses are hard to find, and I think they seriously try to be "bad".** The funny thing is you know right when they walk in if you will clique with them or not. And it's either the best feeling or the worst because nurses have long shifts so you've got at least 12 hours to be dealing with this person. Every time I know a shift changing, I nervously await what will walk through the door. We'll start with the good nurses. For the most part they are all amazing, but there is a few that I have had that will stick out in my mind that I will probably never forget. The best nurses are always happy. They let you know that you are cared for and that they like you, but they don't over do it. They tell you exactly what you want to know, and they answer your questions, but they don't over answer them. They tell you that you are going to make it and that they believe in you. They bring you water when they notice on their own that it's getting low. The bring a smile to my face every time they walk in, and my smile stays after they leave. Now we'll get into the nurses that merit the "bad" name. God forbid you ask these nurses a question, because they over answer them and let you know things that you do NOT need to know. I have had nurses tell me that most people with my diagnosis will need a transplant and that if it happens to just "stay positive." WHAT? Why would they tell me that? What does that even mean? Why would they say that if they don't even know I will for sure need it. I've also had nurses plain out say, "You will lose your hair but just stay positive." That's just something that doesn't need to be said. I'm not ignorant. I'm aware that I will most likely lose it. Thank you for bring that to my attention while you stand there with your full luscious locks. Who taught them that those are okay things to say to a twenty-year-old undergoing her first round of chemotherapy? I also had a nurse call my chemotherapy my "pink lemonade cocktail" as she laughed. I just didn't find it funny. It's a freaking bag of poison being injected into my body. You'd think that there would be some kind of common sense, but I guess not. So there's my rant. It's not easy to be a "bad" nurse, but the bad ones have been bad and negative. They definitely don't belong in the oncology department of a hospital. But despite their comments, I hold on to the memories with the good nurses and their positive thoughts, because you just can't let shit get to you. Moral of the story: just use common sense before you open your mouth to someone battling cancer. You can't go wrong with healing words and positive thoughts. On October 21st, I started my first cycle of chemotherapy.
At 20-years-old, or any age for that matter, you'll never be ready for chemo. I sat down in my hospital room (which is awesome by the way--surround sound, a huge TV and mini fridge) and had my dad bring some Little Ceasar's. I got acquainted and said "Well, let's get this party started." The first part of the treatment is not considered chemotherapy. It is an injection of antibodies called Rituxan to alert my body to start fighting off the cancer. About 70% of patients have a reaction to it, and lo and behold, so did I. I had what they call "rigers." This consisted of me uncontrollably shaking and shivering for about 20 minutes. It was pretty scary, but they got it under control, adjusted the dose and we haven't had any more issues with it. Then, I started the cocktail bag of chemotherapy. It is infused into my body through a pick line. I haven't felt anything and it has been going extremely well. They say it's usually after the chemotherapy when your blood levels are low that it hits you. I'll deal with that if and when it comes. Here is my awesome room! |