Post Transplant (Week 3)

*(Day +13), Monday, (May 24th), was a nice day. I woke up around 8 and ate some pop tarts and watched some TV. I got my usual morning platelet transfusion around noon and then tried to nap a little bit but couldn't really get comfortable. My legs started to swell again because of the meds so I tried to stretch and I took a few pain meds so that I could rest for awhile. I woke up and ate chipotle around 3. The doctors still think I'm crazy for craving chipotle but it makes my body feel stronger when I eat real, filling food. In the afternoon the chaplain came by for a visit and we talked for a bit. She's really nice and good at keeping me calm about things. I took a short nap in the afternoon and then ate some chicken strips/ veggies and fruit for dinner. I'm trying to eat healthy food and filling food so that I keep my strength up. It seems to be helping because I'm not sleeping as much and I'm more coherent. I'm still kinda loopy from all of the drugs and it's annoying because It's impossible for me to watch a movie. The other day I tried watching Valentine's Day but there were too many plots going on and I got too confused so I had to stop. I also tried to watch Zoolander tonight but the stupidity was literally giving me a headache. I've mostly just been watching The Office, Friends and Sex & The City because they're easy to follow. My Whites are .1 for the third day in a row! I can't wait for them to grow more! We did have a tiny scare, I got my first fever yesterday and apparently my body is now showing that I have some sort of bacteria growing inside of me. It probably got infected through my mouth sores. Thankfully they already put me on an antibiotic for it and my fever went away so it looks like the bacteria won't be a problem. It was just kinda scary because it was our first complication, really. My blood sugar seems to be a little bit better but I still have to get insulin several times a day. I've been trying to stay pretty active by walking around my room a lot, showering every day, playing with different scarf styles, etc. That's about it for today. I'm starting to really miss my friends and I'm hoping that some people will start planning trips soon. People keep talking about visiting but who knows if it'll actually happen. It's getting harder to be around my mom 24/7 and it's hard because she has to do everything for me. Literally. She has to cook all my food, get all my stuff, help me move sometimes, etc. About the only thing I get to do on my own is shower. And even then they make me sit in one of those old lady chairs. I hate depending on somebody else, especially since I'm 18. I think we need a break from each other. Soon. We aren't fighting, I just feel myself getting more annoyed about being helpless. Oh well. I just need to focus on the positive. More people have filled out the chart to guess when I'll get to leave the hospital and some people are guessing early June, which is just in like two weeks. I can't believe I've already almost been here a month. The time is flying and I'm getting through it! Also, If you want to guess what day you think they'll release me from the hospital, (to go to the Ronald McDonald House, not to go home to kc), leave your name and date/guess under comments and I'll add you to the calendar! The winner gets a prize!

*Day +14), Tuesday, (May 25th), was my worst day by far. I woke up in the middle of the night with intense pain in my muscles. My muscles were spasming so hard that I couldn't control my body. I stood up and got really bad pressure in my head so I hit my pain pump and it actually made my head start ringing more. I tried to stand up but the pressure in my legs wouldn't even let me support my body. I laid in bed for hours in pain while they tried several different pain meds to numb the pain. I didn't sleep until around 8 a.m. My spasms were so bad that my teeth started chattering and it scraped up all of the mouth sores in my mouth so my mouth ended up bleeding all morning. It was awful. I basically spent the entire day today crying and sleeping and trying every pain med possible. I was so incredibly uncomfortable. The doctors warned me that things would get worse but it's just hard to deal with. I had a little bit of a fever again and it looks like my body is trying to fight some some sort of infection, which would explain why I felt so awful today. Later in the day I did manage to get up and eat my favorite pasta. It made the day muuuuch better. They had to up my insulin again because of my blood sugar but other than that, I'm still eating okay. I was really careful to clean up the nasty sores in my mouth so that they don't get infected. Overall, this is just a day that I never want to remember. I'm hoping I can actually get some sleep tonight. I kept my mom and all the nurses up all night. I'm sure they didn't appreciate that very much. Ok, well, Let's pray for a better tomorrow. Goodnight.

*(Day +15), Wednesday, (May 26th) was a better day than Tuesday but it was still really strange. I slept in an extra hour but was still up and out of bed by 8 am. I had my typical morning pop tarts. The warmness feels so good on my mouth sores. I also discovered a delicious hot chocolate that you can buy down in the lobby. They somehow manage to get whipped cream to last throughout the entire drink. My biggest pet peeve is when the whipped cream melts within the first few seconds. This lasts the whole time. It's delicious and warm and also feels great on my sores. My mom hadn't showered yet so my nurse actually offered to go down and get some for me. She's my primary nurse, meaning I have her almost every day and she's really sweet. Because I was having a good morning, my mom left in the morning and came back early afternoon. It was nice to be alone for a few hours. I'm still struggling with having to rely on her for everything. I know she doesn't mind it and I know that I'd do the same if I was in her position but I just feel continually guilty for making her do things for me. I'm trying to deal with it because she's been so supportive and helpful throughout this entire thing. It's crazy that she's able to do all of this on her own. I admire her strength for being able to remain strong for the both of us. That's what moms are for. I'm still dealing with chemo brain. I had too many pain meds at once this morning and actually fell asleep while sitting up in bed. When I woke up, I realized I'd sent emails out to people saying things that I didn't not intend to say. It kinda freaks me out that I can't remember everything that is happening. I guess in the long run it will be good because I won't have to vividly remember all of the pain I'm experiencing now. Here in Minneapolis they do this really cool program called 'care partners'. It's where they match a volunteer to a family and the volunteer just kinda acts like a friend and confidant for while you're away from home. Our care partner is named Irene and she's really nice. She came by in the afternoon to hang out with me because my mom was gone. We talked about graduation and she even brought me a really cute pink hat that says something about 'keep fighting' on it. It's perfect. While My mom was out, she also stopped at this delicious cupcake place and we bought cupcakes for some of my nurses as a surprise. I'm not sure if I've explained before but they do this thing where you make a list of nurses you want to be on your 'team" and then whenever they're working, they try to give you somebody from your team. It's nice because then you start to see the same people every day and you get comfortable. We decided it was a good day for cupcakes because I was feeling well and the day before had been so rough. I think they really appreciated it. I got my yearbook in the mail today which was nice but I honestly haven't had the energy to look very closely at it. It's kinda upsetting because I missed all of the group pictures like debate, journalism, YIG, forensics, national honors society, etc.. Oh well, I just keep telling myself that those things are petty in comparison to what I'm going through. I'm still waiting to hear if anybody is planning to visit any time soon. Everybody seems to be busy moving out and partying and doing end of the year stuff. I've already been here almost a month and I really need some fresh faces. Hopefully somebody will be able to come soon. Anyways, I can feel myself starting to fall asleep at the computer again so I should probably go. I'm glad that I've been able to blog every day because things get fuzzy so fast. It also helps me to keep track of the day and stuff. Alright, goodnight.

****Oh also, Don't forget to go to the 'Reason to Smile" fan page on facebook and look up the discussion on when you think I will be discharged from the hospital. If you follow those steps, my mom will add your guess to the calendar. (Remember, this is the day I leave the hospital and go to the Ronald McDonald House- NOT the day they send me home to KC.) There will be a prize for the winner.****

*(Day +16), Thursday,(May 27th) was an alright day. My white count it still at .1 which is better than nothing but we're anxiously waiting for it to get even higher. I had my usual pop tarts and hot chocolate for breakfast, watched some TV and did some stretches because my knees and ankles are swollen again. My mom had to go out and buy some big t-shirts and big lounge pants because my normal clothes are too tight now because of all this water weight. So I basically look like I'm pregnant all the time now. I can't even wear slipper socks because they cut off the circulation in my feet. They keep assuring me that it's not a big deal but that's hard to tell a teenage girl. It makes me more self conscious about what I eat, too. They encourage you to eat because it's better than getting IV nutrition, but then they have to give me a bunch of insulin because real food mixed with all these drugs=massive weight gain. I'm not even eating the normal amount of what I used to eat and I still feel like a cow. They also warned that you can get weird cravings after transplant and I definitely have. Anybody who knows me knows that I prefer salty over sweet. However, lately pop tarts and cupcakes and cookies are what I'm craving. It's very out of the ordinary for me. I had to get platelets and red blood cells today so I was pretty groggy again for most of the day because of all the medicines. I fell asleep while on my laptop....again...but this time I don't think I said anything too embarrassing. I also tried to watch Dear John twice and I still can't remember what happened because I kept falling asleep. I also missed the season finale of American Idol, which makes me sad because I really liked Crystal. :( Right now it's 12:50 on Friday (technically) but I can't sleep for some reason. I think I'm going to start reading a book and maybe stretching out my muscles while I do that. Talk about multitasking. The physical therapy people are really happy with me because I've been out of bed a lot more than the other patients. My goal is to keep getting out of bed so that they don't start bugging me every day. I'd rather stretch on my own time instead of doing silly yoga routines whenever they decide to randomly stop by. OK, well I think that's enough for one night. Again, don't forget to go to my Reason to Smile fan page on facebook and look under discussions. You can guess what day you think they'll release me from the hospital. So far, there are a ton of guesses on my calendar here and it will be interesting to see who wins. Bonus points if you pick the same day as a doctor.

*(Day +17), Friday, (May 28th) was a great day. I woke up around 6 a.m. but didn't want to wake my mom so I just watched the news and laid around. My mom finally got up around 9 and got me my typical warm strawberry pop tarts and hot chocolate for breakfast. I'm starting to become a creature of habit. I sat in my chair and did stretches while watching TV for most of the morning. I got my usual platelet transfusion in the late morning and took a nap during, like usual. My mouth sores were starting to act up so I ate noodles and fruit for lunch. The afternoon was pretty uneventful. I'm starting to get really restless. I actually just unplugged my pole and started walking around the room finding random things to do because I was so sick of just sitting around watching crappy TV. The channels suck here. They don't have MTV, vh1, e!, a&e, etc. They don't have anything! The only channels I can stand are TBS and USA. Even then, it's hard to find stuff to watch. My mouth sores were much better by dinner time so my mom went out and got us some actual food from a restaurant down the street. After dinner, I took my usual shower and then got really antsy again because I feel like I have nothing to do. One of my favorite nurses, Em, decided to paint my nails for me. She's really good! She even did little flowers on my nails. It looks professionally done. I'll have to take some pictures and upload them later. I definitely feel a little more girly now, despite the bald head and swollen legs. Overall, it was a pretty uneventful day but that's what made it so great. I didn't use my pain pump nearly as much as I have been the past few days so I'm not nearly as groggy and I actually remember everything that happened today. Hopefully the weekend will go as smoothly as today!

*(Day +18), Saturday, (May 29th) has been a great day so I've decided that instead of giving you a rundown of my day, I'm going to switch it up and show you some pictures of my room because today has been uneventful and all I've really done is decorate my room because I'm going stir crazy. I should warn you, this is one of the largest rooms on the unit. Most rooms are like a third of this size. I lucked out and got a big room because I'm one of the oldest patients here.

So here's some pictures:

Here's the door where you walk in. Bathroom is on the right.

Wall on the left. The top sign is a sign that most of my senior classmates signed for me. The bottom sign is a sign that my senior English class signed for me. Both are really sweet and thoughtful. It took me hours to read all of the comments and I'm pretty sure I still haven't gotten to all of them.

Close up of the sign from my senior English class

Farther along the wall. You can see two strands of cards I've received from people and you can see a picture of the Empire State Building and a computer that the nurses use.

Farther along the same wall. This is view from my bed. First, you can see a white calendar where people are placing their guesses for the day I'll be released. You can also see my college acceptance letter hanging next to the calendar and you can barely see the TV hanging above the letter. You can also see a black/tan canvas with a quote from the Dalai Lama on it. It says "Every day, think as you wake up, today I am fortunate to have woken up. I am alive, I have a precious human life. I am not going to waste it, I am gong to use all of my energies to develop myself to achieve enlightenment for the benefit of all beings, I am going to have kind thoughts towards others, I am not going to get angry or think badly about others. I am going to benefit others as much as I can." On the floor you can also see a pink bucket filled with goodies that my senior English class got me. There's a ton of stuffed animals sitting on top and a bucket of hats/scarves sitting next to it. Lastly, you can see my white board where we write what day I'm at and who my nurse is for the day.

Farther along the same wall. You can see a bunch of balloons that people have gotten me and a table where my mom does her work.

This is a view from my door. You can kinda see a long strand of cards I've gotten from people that goes all the way across the window.

Close up of all of the cards. And my Mom's bed.

My bed and table with all my junk on it. Usually it's not that messy but I have a ton of nail polish sitting out because one of my nurses, Em, painted my nails last night.

Chair next to my bed where I spend most of my time. The blanket on the back was made for me. It's a design of New York. The picture behind it is also a picture of New York.

That's about it! You just got a 360 degrees view of my hospital room. As you can see, they really let you do whatever you want with the room so that it feels like home. I love having reminders of New York everywhere because it reminds me of what I have to look forward to after all of this is over. I also love that I can hang all of my cards as a reminder of everyone who is thinking about me. Here's proof that I really do appreciate everything that is sent to me! :)

*(Day +19), Sunday, (May 30th) has been a very mixed day. My night was not very pleasant so today was mostly spent sleeping. Last night I got a tape in the mail from our debate/forensics/mock trial banquet. The banquet is always really exciting, especially for the seniors, because that's when students get a chance to be recognized for all of their hard work throughout the season. I was really bummed that I wasn't able to make it this year but excited because they taped it for me so I could still see it. . Tara, our nfl president, made a shout out to me at the beginning of the program, saying that the squad missed me. That was really nice of her and I really appreciated it. I was kind of disappointed though because this year every single senior got some sort of award except for me. I know they have a rule that you don't get an award if you don't show up to the banquet but I assumed that they would make an exception for me because me not being there was out of my control. It's disappointing because I feel like I've been such a big part of the squad for all four years. For the part of the debate season that I was present this year, I successfully planned several social events and actually got people to show up. I also helped to teach several of the novice classes on a regular basis and I was a lab leader for debate. I felt embarrassed after watching the banquet because I had expected to receive an award for something. I've received an award every other year. Freshman year I won a hat as an award because I was a novice who was always willing to do whatever the coaches needed (wear any hat). Sophomore year I won the coaches award, which is usually given to someone higher up. Junior year I won a rule book because Olivia and I used to be obsessed with the rule book so the coaches got us one to keep as a gag gift. Naturally, I figured I would receive some sort of award this year too because I had every other year and every other senior won something this year. Maybe I'm being cocky for assuming that I deserved an award. Unfortunately my legs also decided to swell again from all of the medicines so I was up all night in pain. This made me pretty cranky for most of the day so my mom decided to leave and run some errands for most of the day so that I could rest and be alone and have a mellow day. I finally got some sleep during the afternoon and now I'm having a pretty good night. I usually have 3-4 different nurses a day, depending on how the shifts work out, and today I lucked out and had three of my favorite nurses. My morning nurse was Theresa, a nurse who is really nice and leaves me alone when she knows I need rest. My afternoon nurse was Laura, a nurse who is actually my primary nurse (meaning I automatically get her whenever she's available). My night nurse right now is Em, a nurse who I haven't had in forever but she's one of my favorites. She's also the one who painted my nails the other night. I think tonight she's going to finish them. They look really cute so far. They're pink with different colored flowers on each finger. Given the fact that I feel puffy and fat and bald and disgusting, having cute nails is a high priority to me right now. Lastly, I should say that this is the last day of week three post transplant! I can't believe I've been here for nearly a month already. Time is going by so fast and I'm thankful for the strength that I feel I'm demonstrating so far. I'm also thankful for the strength that my mom is demonstrating. She deserves credit for giving up her life for my battle. It's hard to see all the other families up here with both the mom and the dad or even grandparents around to help out. Almost everybody else has huge support systems with them to help make things easier. It's hard to be so far from home. Thankfully my dad will be visiting in a few weeks. It'll be nice to give my mom a break and spend some time with my dad. My goal is to be out of the hospital by the time he visits. I think I can do it.

**Reason of the Week: Recently, I was contacted by a woman named Elizabeth who has a son named Alex who was also diagnosed with DC. His story is similar to mine and he will be receiving a transplant in the near future. She read my blog and is finding strength in my experience. I'm so happy that my battle is helping others. It's important for me to remember what a role I'm playing in medicine because of the limited amount of research. Contributing to research and finding a cure is always a reason to smile (RTS).

****Don't forget to leave a comment and let me know what your reason of the week is!****