This year, I found out a few days before Thanksgiving that I was neutropenic again. I had a plan to go to Detroit and attend the Lion's game on Thanksgiving, which is very dangerous for someone who is neutropenic. I wouldn't know until after Thanksgiving what my counts were at. I finally decided that you can't just put your life on hold, and I went anyway. Thankfully, I didn't get sick and I had so much fun watching a great game!
This year, I have so much to be thankful for. I'm thankful for U of M hospital, doctors, and nurses. I'm thankful for the men and women over seas fighting for our freedom. I'm thankful for my supportive friends and family. I'm thankful for my mother for being my caregiver and never leaving my side when I have to go to the hospital. I'm thankful for my friend Sasha for being supportive and starting the GoFundMe page. I'm thankful for my boyfriend for being a rock through this process and making me feel beautiful even though I don't have any hair. I'm thankful for Michigan State University for being an amazing school and giving me the best education. We should all reflect on what we are thankful for not just this time of year but all the time. Even though 2016 sucked, these kinds of years show you how much you have to be thankful for. : )
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This is the first time I've felt like myself in a while.
A lot of times, side effects of chemo can make you feel crappy. You're left to deal with stomach aches, lack of appetite, over all pain and fatigue among many more. Something is different this time, though. I've hardly had any pain or set backs, and I'm finally able to live my life "normally" during my recovery period before my next treatment. I had the best birthday weekend ever. It started off Thursday night with a party put on my roommates. We were able to celebrate at midnight by popping a bottle of champagne and blowing out some birthday candles. We then went to some of the local bars. Even though I couldn't drink much, it was a blast! Friday, my actual birthday, was spent relaxing and then going to the Lansing Brewing Company for dinner. I enjoyed one of their drafts and some yummy pizza. Then, Saturday was spent tailgating for Ohio State and celebrating some more after the game! It feels so great to finally get to experience positive things throughout this. It feels amazing to have moments where you feel completely normal--where you can forget about the cancer inside of you. Thank you to everyone who made this weekend so amazing. mo·not·o·ny
məˈnätnē/ noun
Well, there you have it. That about sums up the 5 days I get to spend per cycle for chemotherapy in the hospital. Stay with me here. I promise it gets positive. People always tell me, "Come on Emily! You got this! 6 rounds is nothing." Okay.. but there's six rounds of five days each, and five days is basically a week, and there isn't much time in between to break up these treatments. But the worst part of it is the ~monotony~ of it all. The whole time, I'm hooked up to a PICC line, which is sort of like an IV, and I have to lug wheely thing with the bag attached around anywhere I go. I have to unplug it from the wall, wrap up the chord, and take it everywhere. I've got to take it to the shower, if I need to pee, if I want to go on a walk. It comes everywhere. It's like a shackle restricting my freedom and I can't stand it. Also, just the freaking routines of everything is exhausting. I often get chuckles from the nurses as they see me walk down the halls as I condescendingly say, "Just the same shit, different day." I think they feel it too. Any way, here's the routine. 1. 2:00 a.m. My mom wakes up and stares at me until I wake up (ugh) 2. 4:00 a.m. Daily Blood Draw and Vitals. Yeah you heard it. A.M.! 3. 8:00 a.m. Vitas. 4. 9:00 a.m. Morning meds. Usually about 10 pills. 5. 11:00 a.m. Chemo bag change. 6. 12:00 p.m. Vitals. 7. 2:00 p.m. Shower. 8. 4:00 p.m. Vitals. 9. ~ 5:00 p.m. Mom forces me to get up and take a walk down the same 400 feet of hallway that I am limited to. 10. 8:00 p.m. Vitals. 11: 8:30 p.m. Mom passes out. 12. 9:00 p.m. Night time meds, again. 13. 12 a.m. Vitals Meanwhile, in between these times of roaring excitement, I keep myself busy with coloring books, crosswords, and the same 40 channels (20 of which are sports or news), and the same 20 some movies they have to offer. If we are feeling really crazy, we'll go down and do a puzzle. So essentially I pass my days with the activities of a 5-year-old. The monotony was really starting to get at my this past time. Maybe it was because the first time was so new. Things didn't seem so bad. But now, I was able to completely wrap my head around what it would be like to do this four more times, and it sounds absolutely torturous. Maybe it would be better if I didn't have to deal with the awful side effects in the 16 day recovery period, or if my recovery was a little bit longer. But this seems like an on going roller coaster that increasingly makes me nauseous, and I can't get off. Luckily, someone came in to give me some tips about how to make these trips more doable. I'm really hoping these work, I'm desperate! First of all, she suggested I take something to look forward to that I save for only when I'm in the hospital. I absolutely love art, so this could mean bringing some canvases and paints, some jewelry stamping or beads. It could be anything! This already started to get me excited. She also suggested that I could have a special thing I do every time I leave. Maybe it's going to my favorite restaurant or getting my nails done. This thing to look forward to really could make a difference. Well, I'm definitely willing to try it out. I'll let you know how it goes next cycle of treatment. If there's something in your life you just can't stand, treat yo' self. Sometimes we can't escape the shit we don't want to do, but we can make it a little less hard. In the meantime, I'M 21 IN TWO DAYS!!! As I've said before, during times of trouble, you realize how amazing people are.
One of my best friends, Sasha Tremblay, decided to create a gofundme page for my medical bills upon hearing the overwhelming costs of my treatment. I am so thankful for all of the people who have donated thus far. Some of them I don't even know or have never met in person. It truly touches my heart to know how amazing and selfless people can be. You guys bring me to tears nearly every day! Yep. It finally happened.
The moment I decided to shave my head was extremely hard. Hair is everything to a woman. It's her identity, her femininity. My father shaved it, and I cried the whole time. After he was done, I didn't want to look at myself. I didn't want to face reality. I finally looked. Although it wasn't as bad as I thought, I long for the time I will get to grow my hair back nearly every day. Although there are options like wigs and hats, it's just not the same. As I walked into the hospital for my second round of chemo, I felt empowered with my bald cap. I wore my illness on my sleeve, and the looks I got weren't of disgust, they were of admiration--an acknowledgement of bravery. A shared, obvious knowledge that I am a fighter. 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. 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!) |