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!****

Post Transplant (Week 2)

*(Day +6), Monday, (May 17th), was a pretty bad day. I started to lose my hair big time. I can't even touch my head without clumps of hair falling out. My cheeks are so swollen that my eyes are starting to swell shut and I'm incredibly puffy and fat. I'm finding it hard to blog because I'm so shaky and I feel incoherent half of the time. The one plus side of Monday was that it was graduation day. We had my diploma, honors cord, tassel, gown and everything mailed to me so I was able to wear it for a few minutes. My mom took a few pictures. Warning: They're hideous.

My senior class was also nice enough to sign a huge sign wishing me congratulations. It's hanging on a wall in my room. I was determined to watch the live feed of graduation so I stayed up for two hours watching all 500 something seniors walk across the stage but OF COURSE I was not having a lucky night. The live feed made it to the MA and then froze and picked up on MU. There's only about a minute of live feed that didn't work and it happened to be when they read my name so I didn't even get to hear my name called. We did order a DVD so I'll at least get to hear my name in a few weeks. I also have to wait a few weeks to see my yearbook which is a huge bummer. I really thought I'd be okay with missing graduation but it hit me pretty hard last night. It's tough to miss all the fun senior stuff. I was pretty upset so I didn't even eat any cake but I did open a few presents and cards and I'm determined to eat cake soon. I just really wanted to hear my name live.

*(Day +7), Tuesday, (May 18h), is another hard day. I didn't sleep well during the night because my mouth sores started getting really bad. I'm on a pain pump where I can get pain meds every ten minutes which is nice but it's also making me really drowsy and disoriented. Thankfully, I've experienced 6 weeks of mono so I have a little higher tolerance for mouth sores. I'm still eating every day because I don't want them to put me back on nutrition. If I'm going to be fat, I'm going to at least enjoy food. My memory is a little shaky and I feel like I don't make much sense when I talk or type. My hair is also falling out big time. I'm pretty sure we're going to cut it or shave it within the next hour or two. I'm determined to eat cake and be happy today but I need to get rid of this hair first. It's the weirdest feeling. My scalp tingles and itches and it feels like I just have clumps of hair sitting on my head. It's hard to even explain how weird it is. I'm still puffy and fat and uncomfortable but I'm hanging in there. I just feel like my hair is crawling all over my body. When I shower, hair just sticks to me and I can't get rid of it.

*(Day +8), Wednesday, (May 19th), has been a really weird day. Last night my hair started falling out a ton so one of the nurses just shaved it. It feels so weird. It took over an hour just to get rid of all of it because it was so thick. I just sat in bed and cried while the nurse shaved it. Here's a picture of the horrific event:

It took me like half an hour before I would even leave the bathroom without a scarf because I couldn't even stand to look at myself. I keep getting cold but sweaty. I can barely stand to look at myself in the mirror. Taking a shower felt really weird on my bald head, too. My weight has gone down a little bit and I'm still eating every day so that they don't give me IV calories. I'm starting to get "chemo brain". I'm still really shaky so it's hard to text and type and communicate. I'm trying to blog every day because I keep forgetting things really fast. My skin is also really sensitive right now so I'm trying hard to keep it covered in lotion so that I don't itch because my itching is causing these crazy looking bruises. My mom wants to take pictures of the cool bruises because they are kinda phenomenal but I think that's a little too much. My clothes are still fitting tighter and I still feel extremely uncomfortable and puffy. It's really embarrassing because now I can only wear my loose fitting clothes because my clothes are getting too tight and causing bruises. I just have to keep reminding myself that it has to get worse before it gets better. But it will get better. I'm already out of energy so it's time for yet ANOTHER nap.

*(Day +9), Thursday, (May 20th), was a better day. I'm starting to become more tolerant of all of the pain and It's easier to handle. I still have really bad mouth sores but the pain meds have been helping ease the pain. My weight has also gone down a little bit and my legs aren't as puffy anymore. I managed to wake up at 7 am and stay up until noon. I took a little nap and then ate chipotle again. The doctors think I'm crazy for eating real food but it actually helps. I just go light on the chicken because it's kinda spicy but then I get extra lettuce, cheese and sour cream. The coolness feels pretty good on my throat. Especially the rice and beans. Plus the coolness from the cheese and lettuce and sour cream is really soothing.My doctor said he's only had one patient that was able to eat all the way through transplant and it looks like I might be able to do it. I still haven't had a single fever, which is incredible. I'm still having some high blood pressure but that's to be expected because of all of the blood products and steroids I'm getting. It should go back to normal after awhile. We're still waiting for my new cells to grow, it should be a couple more days before we start to see anything. Still keeping my fingers crossed. I'm starting to get used to being bald. I just have to avoid the mirror. At night, I sleep bald because otherwise my head gets clammy and sweaty. Then during the day I've been using scarves and hats to cover up so that people don't have to look at my alien head. Other than that, it was a pretty boring day. Tomorrow my Aunt is coming in town to visit so it will be nice to have visitors. I actually look forward to visits from anyone, even the physical therapy people, because it's nice to have real conversations. I'm hoping that some friends will be able to visit soon since school is over. We'll see. I haven't heard word of any visits yet. I have been getting stuff in the mail which is really exciting.

*(Day +10), Friday, (May 21st), was an alright day. I woke up again at 7 and tried to watch a movie but I got too tired and had to take a nap around noon. People kept coming and going from my room like crazy so I didn't really get any good rest today. My Aunt happened to be in town so she came by to hang out for awhile. It also gave my mom the chance to leave for a few hours to get a break. My aunt brought me my favorite pasta in the world so I had a very yummy lunch and it didn't seem to irritate my mouth very much. My mouth sores are still getting worse but I'm still managing to eat. My blood pressure and blood sugar keep spiking but that's normal because of all the steroids I'm on. It's frustrating because I actually feel well enough but now to eat but we have to track every carb that I eat which is kind of annoying because I feel like a pig. They have to keep giving me insulin which isn't fun. Who would have thought it would be more complicated for me to eat then to not eat. I'm still getting used to being bald, I don't really like the nurses to see me without anything on my head because I still have a few patches of hair so it looks funny. I'm still trying hard to blog every day because it's really hard to remember what day of the week it is or what I even did that day. I'm already fuzzy on who my nurse was this morning. It's weird to feel so disoriented all the time. I can't wait until I don't need as many pain meds so I can actually think straight. Today I made it to the double digits! I'm already day +10, I can't believe I've already been in the hospital for almost a month. It's going by really fast. I'm just ready for my white cells to start growing so that we know whether the transplant is working or not. The waiting game isn't fun.

*(Day +11), Saturday, (May 22nd), was a good day. This morning we found out that my white cells are .1 which means that the white cells are starting to grow. They had been 0 since transplant day but now we're starting to see progress and the hope is that this means it will continue to grow into it's own marrow and I'll be healthy! It's still too early to tell if the transplant has worked but this .1 makes the doctors very optimistic that it will continue. I'm still getting really bad mouth sores and my blood sugar has gotten pretty high because of all of the steroids and meds I'm on. I've never been diabetic so it feels really weird to be shaky all the time. It's still hard to eat because I'm so unsteady. It takes me like 2 hours to eat a meal. I'm still eating three meals a day, it just takes forever to eat. I'm still really tired and disoriented but it's making the days go by really fast. Even though I'm bald, I keep having little bits of hair that fall out in my bed which is kind of depressing. I think it should stop soon and start growing back. Right now it looks really dark so I'm interested to see what the texture and color will be like when this is all over. I haven't let anybody see my bald head except my dad, little brother, little step sister, mom and nurses. I'm still really bloated and puffy but I'm starting to get used to the pain. I just keep reminding myself that I'll go back to normal eventually.

*(Day +12), Sunday, (May 23rd), was a pretty awful day. I woke around 7 with really bad pain in my muscles. My muscles wouldn't stop twitching and I couldn't get them to relax. It freaked me out because a few hours of nonstop shaking can really mess up our balance and strength. They drugged me up pretty fast so I don't really know what happened throughout most of the morning. I did get my very first fever so far but it was low grade so they aren't too concerned. My White blood cells are still .1 and hopefully after a few days we'll see them grow even more. My mom made a sign up sheet where all the nurses can what day they'll let me leave the hospital. I think the winner gets some sort of KC BBQ or something. I refuse to guess because I don't want to jinx in. One of my night nurses, Julie, thinks I'll be discharged on June 4th. And then the physical therapy lady, Courtney, thinks I'll be discharged on June 6th. I'm still having mouth sores and it's taking me forever to eat. It took me half an hour to eat a small bowl of spaghetti's a over an hour to eat a chipotle bowl. It hurts while I eat but then afterwards my mouth feels so much better. Really cold ice tea also does the trick. Same with watermelon and cantaloupe. I've been having such weird cravings lately because of all the steroids and meds. They're still tracking my blood sugar so I have to get like four shots of insulin a day. I can't wait until that's not a problem anymore because it's painful. I also discovered this delicious Italian ice that feels awesome. My mom picked it up at the Midtown Global Market the other day and it's a mixture of Italian lemon ice and berry ice. It's really sweet and kinda numbs your mouth. It's fantastic.

**Reason of the Week: My Whites are .1! Optimism and progress are always a reason to smile (RTS).

Post Transplant (Week 1)

*(Day +1) Wednesday, (May 12th), was not a good day. I woke up in the morning feeling very overwhelmed from the day before. We had to put a sign on my door to ask people to leave me alone for the day because I was anxious and worked up and very uncomfortable. It's hard to describe how my body is feeling. I can feel my body working harder than ever and it's exhausting. Even getting up to take a shower is a hard task right now. It's frustrating to know that things are going to get worse before they get better.

*(Day +2) Today, (May 13th), is another tough day. As you all know, I was given cord blood from two different people, which increases my chances of one of them working. This morning we learned that one of the two units was growing some strep in it. The doctor says not to worry because they have meds they can give me but it's scary to know that strep could be growing inside of me and I have nothing to fight it off with. I spent most of the day in bed again because my stomach has been killing me. They've put me on nutrition so I have over 1,000 calories pumping into me constantly. It's not fun or pleasant. I'm still trying to eat a little bit every day just to keep my stomach used to food. I did manage to exercise for half an hour today and I've been out of bed for a few hours. I'm trying to occupy my time by watching seasons of shows. Right now I'm finishing up glee. Anything to keep my mind off of everything.

*(Day +3), Friday, (May 14th), was another hard day. My red blood cells dropped so I was really light headed and shaky for most of the day. I did manage to eat and get out of bed for awhile. The good news is that it sounds like the strep isn't going to hit me so I'm feeling more confident. We're still just waiting to see if my new marrow will grow, which is an awful waiting game. Friday was also tough because I missed out on the debate banquet. I think they're going to try to mail me the video so I can at least watch it but it was really hard to miss out on it because debate and forensics were such a big part of my high school experience.

*(Day +4), Saturday, (May 15th), was a much better day. I woke up at 7 am and couldn't get back to sleep because my back was sore from laying in bed so much. I spent my morning in the chair watching tv. My stomach has been much better today. I had poptarts for breakfast and chipotle a little bit ago. Everything seems to be sitting okay so far. I am starting to notice a few more mouth sores, which can get really bad over the next week or two. I'm being really careful to keep my mouth clean and not irritate it. For now, it's tolerable.

*(Day +5), Sunday, (May 16th), was another tough day. The shakes got so bad that it's hard to eat or read or hold anything steady. I also started gaining crazy weight. My legs and ankles swelled so much that I've gained about 20 pounds in four days. It's extremely depressing and I feel like a whale. Thankfully it's all water weight so it should go away but it's so unpleasant and painful right now.

**Reason of the Week: The weather is starting to get really nice and I can see a good deal of sunlight through my windows. The sun seems to put me in a better mood. Sunlight is always a reason to smile (RTS).

Transplant Day

*(Day 0) May 11, 2010 will forever be considered the most important day of my life. After five years of struggling and fighting and pushing, I finally made it to the day that every sick patient waits for. Transplant Day. This day was by far the scariest and most anticipated day I've ever experienced.

I woke up in the morning and was starting to get really anxious because I knew what was about to happen. I tried to stay calm by laying around and relaxing. My family came around 11 and visited for awhile while I tried to just relax. The transplant was scheduled for 1 pm and I could feel myself getting more and more anxious by the second. Finally they brought in two bags of reddish fluid. Both bags were donated cord blood but each was from a different donor. The hope is that one of the two will be the one to work.

Before the transplant started, a chaplain came by to say a little prayer and bless me. My family members took turns making a cross out of oil on my forehead. Then everybody settled down and got quiet to help me relax.

The actual transplant happened really fast. I just laid in bed and they pumped it right into me through my IV. I was having a lot of anxiety at first and then my blood pressure started to get a little crazy, which they say is typical. I also got really nauseous and light headed and hot. It was very uncomfortable and a little scary but the nurses had everything under control. I got a few hives but they went away pretty fast.

Afterwards I passed out for a bit because I was exhausted. After a nap, we had cake and made a toast and I got to open up some presents and cards from friends and family.

I don't really remember much of the rest of the day because they gave me a ton of meds to help me relax and feel comfortable. My siblings painted my windows and drew some pictures to hang on my hospital room door and then left for the night.

My doctor says it sounds like a had a bit of a mild reaction but that he's cautiously optimistic.

Unfortunately, things still have to get worse before they can get better. It's bittersweet to know that I've made it this far...but I'm nowhere near being done yet. The next few weeks will be a true test to my strength as I battle pains, hair loss and the emotional toll this is taking on me. We're all just keeping our fingers crossed that cells will start to grow.

**Reason of the Day: May 11th is my new birthday! Birthdays are always a reason to smile (RTS).

Here are a few pictures:

My siblings with their "Team Elizabeth" shirts

My mom getting ready to start my transplant

Transplant cake and treats

Jackie hooking me up for transplant

My Mom, Brother and I

Jackie, holding my two units of cord blood Me hooked up to my pole. Don't those bags look nasty?

Chemo

Lovely Readers,

I thought I would take a quick moment to update my blog this morning before I begin my first day of chemo. It's around 6:30 a.m. right now and I'm feeling pretty good.

Yesterday, Friday (April 30th), was surgery day and I got my hickman placed. I was very nervous about the bleeding risks because of my low blood counts but I didn't have much bleeding during the procedure and only had a limited amount of bleeding after. I applied pressure afterwards and we have lots of gauze to help with the clotting process. I was pretty sore for most of the day and needed a few doses of pain meds to help with the pain. Other than that, I spent the day resting and setting up my hospital room. My mom walked over to Noodles & Company for dinner and got me my favorite, Mac & Cheese. I slept pretty well through the night.

*(Day -10) Today, Saturday (May 1st), I'm feeling better. Later this morning I'm getting a few transfusions so I'll probably be drowsy most of the day because they always give me benedryl by IV (along with a few other pre-meds) as a precaution. We started my first day of chemo around 10 a.m. I haven't had any problems yet except for a little bit of bleeding. I was able to eat a little bit of dinner but I can already feel myself losing my appetite. So far I'm not having any extreme pain and I'm feeling pretty stable. I slept most of the day because they keep giving me benedryl every four hours and it keeps putting me to sleep. I've been out of bed twice so far today and I'm planning to take a shower after I finish blogging. I'm thankful everything is running pretty smoothly so far (knock on wood).

**************

*(Day -9) Today, Sunday (May 2nd), was a good day. I got a platelet transfusion this morning around 9 a.m. and then I started my chemo at 10 a.m. I slept most of the morning because of the benedryl but I was able to get up and eat a pretty good lunch. I spent the afternoon napping and watching TV and managed to eat most of my dinner. Luckily, I haven't had a fever yet which is one of the most common effects in the first few days of chemo. One of my doctors said only about 1 in 100 don't get a fever so I'm thankful for that so far. I did have a bit of high blood pressure but they put me on a medication to decrease it and it seems to be getting better. It was a pretty uneventful day and I hope my days stay that way.

**************

*(Day -8) Yesterday, Monday (May 3rd), was my toughest day so far. I had my third dose of a chemo drug called Campath. The past few days I had a little bit of a rash on my cheeks due to the medicine but after my third dose I got really bad hives all over my body. My skin puffed up and I was having trouble breathing. They quickly gave me some medicine to get the swelling to go away and I was put on oxygen for awhile. My hives kept coming back so I had to keep getting medicine throughout the night. It was my first scare since starting chemo so I freaked out a bit. The doctors had originally planned to give me Campath for two more days but because of my reaction, they decided not to give me any more. They are going to continue with the other chemo meds, though. They keep assuring me that it won't effect the outcome of my transplant. I hope they're right.

*(Day -7) Today, Tuesday (May 4th), was much better than yesterday. My hives are gone and they stopped the Campath. I started another chemo drug and I didn't have any reaction to it. I'm starting to get a few mouth sores, which is common. I still haven't had a fever and my blood pressure has been pretty normal all day. The drug I got today is the one that causes hair loss so now I have to wait a week or two to see if my hair falls out or not. I also got to move to a bigger room today because one opened up and the neighbor next to my first room had been screaming his little head off. My new room is much bigger and nicer. I'm now officially one week away from transplant and the days seem to be going by really fast. I'm starting a new drug tomorrow so I'm hoping I don't have any problems with that one because I have to take it for the remainder of chemo.

**************

(Day -6) Yesterday, Wednesday (May 5th), was another tough day. I started a new chemo drug in the morning and got pretty nauseous from it. Thankfully I only threw up once and was then able to eat a meal later in the day. I'm trying to eat as much as possible because the longer I eat, the longer I can hold off having to do IV nutrition. If I'm going to be filling my body with calories, I at least want to be able to taste it and enjoy it. My mouth sores are a pain but getting better. Overall, I was just really exhausted all day but still managed to do my exercises/ stretches and get out of bed. I'm still getting up to shower every day and I'm pretty steady on my feet which is a huge plus.

*(Day -5) Today, Thursday (May 6th), was an okay day. I haven't thrown up today but I was pretty nauseous this morning. They gave me this patch thing to stick behind my ear that is supposed to help with nausea so we'll see how that goes. I slept through chemo and my platelet transfusion but got up this afternoon to eat lunch and move around. The physical therapist came by to visit and she brought peddles for me to use to work out my legs and arms. I worked out for awhile and she seemed to be impressed with my strength. It's really hard to keep your muscles strong when you can't even leave a hospital room. I'm getting more exhausted every day but I'm trying not to look like a lazy couch potato. We'll see how long that lasts.

**************

*(Day -4) Friday (May 7th), was a tough day. My stomach was really bugging me so I basically slept all day and watched a few episodes of Glee. Chemo was alright. I got to leave the room for about an hour because I had to go down to radiation to get measured so they would have everything ready for radiation day.

*(Day -3) Saturday (May 8th), I started a new drug called cyclosporine. I've been on this drug before and I was not a fan at all. So far I've been handling it fairly well, it's just making me really nauseous. I have to get it twice a day so I try to plan naps around those times so I don't have to be awake to feel nauseous.

*(Day -2) Yesterday, Sunday (May 9th), was my last day of chemo! I'm starting to get really weak and my stomach is starting to hurt a lot more but knowing that I'm done with chemo is a huge relief. Unfortunately, things still have to get worse before they get better so I'm not in the clear yet.

*(Day -1) Today, Monday (May 10th), was radiation day. Radiation was pretty easy, I just had to sit in a weird position for 20 minutes while they taped me down and let the machine do it's work. I didn't feel it and I felt fine afterwards. I spent the rest of the day relaxing because tomorrow is the big day! Chemo definitely wasn't easy but I got through it and I hopefully never have to experience that again.

**Reason of the Week: I'm done with chemo! That's definitely a reason to smile (RTS)

Exploring Minneapolis

Dear Readers,

Since we had a week off before starting chemo, my mom and I decided to try exploring the city a little bit. After transplant, I won't be able to get out a lot so this was our chance to see what Minneapolis has to offer. We definitely found more than I expected.

Friday: On Friday we decided to head over to the midtown area. Janet, my social worker, told us about a place called the Midtown Global Market. It's basically like a flea market in a huge building. There are tons of booths with different kinds of food from all over the world. I decided to try some seafood. I got a crab cake burger with lettuce, onion, tomato and chipotle aioli. It was delicious and spicy. It also came with some sort of beet salad, which I did not care for. Here are some pictures:

My mom decided to try some authentic Mexican food. She got chips with a few different sauces and guacamole and two other dishes that I couldn't tell you the names of. They both were made with chicken. The guacamole was ridiculously fresh and semi-chunky.

There were also tons of booths with different things you could buy from all over the world.

There were Mexican bakeries, international candy shops, clothes from African countries, Eco-friendly products and more. I bought a bracelet made by women in Ghana. It's made of clay beads and the money from my purchase will go back to the women who made it. I also bought a hand-braided bracelet with a bamboo cross on it. Lastly, I bought a t-shirt made out of bamboo. It looks just like a regular t-shirt but it's completely Eco-friendly and it's also supposed to be really good for your health. Here are some pictures of the booths:

I also saw my first White Castle ever!

Afterwards we drove around the midtown/uptown area. Both areas were pretty trendy and hippie-ish. We could definitely tell that we weren't far from a college campus.

Saturday: On Saturday we went to Trader Joe's and picked up tons of snacks. My mom's

favorite are these crackers that taste like everything bagels. My favorite is the herb goat cheese. The Trader Joe's here is so big that they even have their own parking garage for all of the customers. When we arrived, we were greeted by a parking attendant who had to direct us where to go because they were so full. There's a picture on the right.

For dinner, we went and had sushi. Sushi is a food that I won't be able to eat for awhile after transplant because of the raw fish. My mom got a Philly roll- made with smoked salmon, cream cheese and chives. I got the spicy tuna roll- my favorite. We also got two pieces of crab and two pieces of scallop.

Later that night we went to see the movie 'Date Night'. It was hilarious! Definitely worth seeing. We also got lost on the way to the movie and ended up in an area that is very similar to the Power & Light District.

Sunday/Monday: We mostly spent Sunday and Monday just relaxing and hanging out around the Ronald McDonald House. We ordered Punch Pizza on Monday. I got the same pizza as before. It was delicious, of course. I think this might be my favorite pizza ever.

Tuesday: I spent Tuesday trying to finish up my graduation announcements and relaxing. We went to the Dinkytown area for dinner and ate at a great place called Kafe 421. Dinkytown is another college area with cool coffee shops and restaurants.

Wednesday: Wednesday morning I got up and walked over to the BMT clinic to get my labs done to check my blood counts to see if I'll need a blood transfusion before my surgery on Friday. Turns out I did need it. After that, I went back to bed for awhile. Later, my mom and I went to check out the 'best hot dog in Minneapolis. It was at this hole-in-the-wall type place called Weinery. Clever. It was a very...interesting...place. It was super tiny and was run by one guy who kept running back and forth between tables and the kitchen. It had an old diner type feel and they only took cash. I got a Chicago style hot dog, cheese fries and cole slaw. The Chicago style hot dog was pretty close to being the real deal and the fries were made from fresh cut potatoes. Not bad. The only down side was that the place looked pretty grungy so I doubt I'll be going back after transplant because of the germ issue. Later that day I wrote my will and filled out my health care directive. Not exactly fun but it needed to be done. Doing things like that makes it hard not to think about what's about to happen.

Thursday: Today I went up to the BMT clinic again to get a red blood cell transfusion. I got two bags so it took most of the morning. I slept through the entire thing because they gave me a dose of IV benedryl beforehand. IV benedryl is one thing I will miss after I'm healthy. It puts you to sleep in literally minutes. After that, I came back to our room at the Ronald McDonald House and took a nap. Then we went out to the Mall of America to have dinner at this Italian place I really like. Now I'm just counting down the hours until my surgery tomorrow. I have to get up insanely early tomorrow morning because I'm the first surgery of the day. I'm starting to get a little nervous because I'm actually starting to think it's going to happen this time. The offices are closed for the night so I don't think I'll be getting a call saying 'transplant is off again'. This should be reassuring. It's not. I'm mostly starting to get nervous about my surgery tomorrow morning because they have to deal with my jugular vein, yes- that's the vein that can make you bleed to death if hit. In case any of you have no idea what I'm talking about, you can read about my surgery here. Thankfully I'll be able to get my hickman removed when all of this is over. A hickman is really important because it's used for giving me chemo drugs and transfusions and my actual transplant. This surgery is riskier for me because my blood counts are so low and that makes me more prone to uncontrollable bleeding. I'm sure that everything will be fine but I can't help but be nervous. Starting tomorrow I'm going to attempt to blog daily so that everyone can hear the details about my surgery/chemo/transplant. We'll see how that goes.

**Reason of the Day: Tuesday, I talked to my little brother, Ethan, on the phone. He was telling me about his day at preschool and said that he punched a boy named Trevor in the 'dinger' because he wouldn't play with him. I asked Ethan how he would feel if somebody punched him in the 'dinger' . He said he would be "very sad". If only all conflicts could be resolved by a few punches in the 'dinger', this world would be a much different place. Preschool drama is always a reason to smile (RTS).

Work-up Week (Take 2)

Dear Readers,

I took a little break from blogging this past week. Mostly because I needed a break and also because I haven't been getting very many comments so I felt a little discouraged. No worries, I'm back to blogging now.

This past week has been pretty crazy. After getting back from New York, I was having really

bad muscle pain in my legs and feet. I started having muscle spasms and I could barely walk. I think it's a side effect from one of the medicines I was on because the med is known to cause muscle pain. The walking I did in New York probably triggered the spasms and pain. After a few days of pain, nothing was working to ease the pain so my doctor suggested that I be admitted to the hospital so that I could get some stronger pain meds. I spent Thursday, Friday and Saturday in the hospital and left Saturday afternoon after my pain dulled a little bit.

Saturday night I had a few friends over for pizza to hang out before I left town. It was nice to see some people before leaving.

Sunday morning I went to breakfast with my dad, stepmom, brother (Jameson) and half brother (Ethan). After that, my mom and I left town. We drove straight to Minneapolis without making too many stops. We got to the Ronald McDonald House around 4 p.m. and checked in right away. We had a wheel chair delivered to the house for me to use until my leg pain goes away. We lucked out and got a really cool room! It's basically like a small apartment, with a kitchen, living area, bathroom and one bedroom. We also have a private, screened-in porch attached to our room. We're on the second floor so it's a nice balcony-type thing. There are two beds in the bedroom, which my mom and I will share. There's also a pull-out couch in the living room for friends to sleep on if they visit. We have one TV in the living room but my dad is going to bring up another TV for us to put in the bedroom so my mom and I don't fight over what to watch. On the right there is a picture I took of the front of the house.

Monday morning started my Work-up Week. Work-up Week is the week before transplant where you have to get a bunch of tests done to make sure that nothing is wrong before you start transplant. On Monday I had an Echocardiogram, EKG, Chest X-ray and Radiation consultation. We ate lunch at a local place on campus called Sally's Saloon. It's really nice that the hospital and Ronald McDonald House are both located on the University of Minnesota campus because we can walk to basically anywhere we want. For dinner we went out to the Mall of America and ate at Bubba Gump.

Tuesday morning I had a Pulmonary Function Test, History and Physical, and

CT scan. After that I had to get a Bone Marrow Biopsy. I've had several of these before but they never get any more pleasant. First they sedate me and then take some marrow and bone from the back of my hip. I'm usually pretty sore for a few days afterwards. This one didn't hurt too bad and the sedation meds put me to sleep really quickly. After that I headed back to the Ronald McDonald House to sleep for the rest of the day.

On Wednesday I had a line consultation in the morning. The line consultation is where we talked about me getting my hickman put in. The hickman is important because that's how I will be getting transfusions, chemo and other drugs. Thankfully I'll only have to have it for a few months and then they can remove it because I already have my port. Medical devices like hickmans and ports are really important for people who need to be accessed constantly because it's much safer than constantly trying to access random veins. After the line consultation I met with someone from Pharmacy to talk about all of the drugs that I will be on during transplant. Then we walked over and ate lunch at a place called Stub and Herbs. Next I met with my social worker named Janet to talk about what to expect during transplant. Janet is really nice and she helps make things easier for patients and families. Then I met with Dr. MacMillan. She's not my doctor but she will be the doctor who is in charge of the floor when I'm admitted to the

hospital. There are nine Bone Marrow Transplant (BMT) doctors who rotate their time on the unit in the hospital. They each take turns being in charge for 14 days at a time. While they are in charge, they go around to check on the patients daily and they make sure that everything runs smoothly. She will also coordinate with my actual doctor, who is Dr. Tolar.

Dr. MacMillan had looked at the results of all of my work-up tests and we talked about what her conclusion was. She basically said that everything looks great and I'm ready to start transplant. We were going to start chemo early next week but if we did that, some of my family members wouldn't be able to come up for the actual transplant day. So instead, we've decided to wait a few days. The plan is to admit me to the hospital next Friday, April 30th. I'll have the surgery to get my line placed on that day and then I'll start the chemo on Saturday, May 1st. That will put the actual transplant day on Tuesday, May 11th. My dad, stepmom, two stepsisters, brother and half brother will all be coming up so that they can be with me on the actual transplant day. It's really important to me that my whole family be there because this will definitely be the most important day of my life. It's the beginning of my new life.

Today, Thursday, I only had one test left which was an ultrasound of my abdomen. After that, we walked over to this really yummy place called Punch Neapolitan Pizza. I had a pizza with arugula, goat cheese, prosciutto and cracked red pepper. It was spicy and delicious and thin, just like I like it. These pizzas are cooked in 90 seconds! There's a picture of my pizza on the left. The rest of the afternoon was pretty relaxing. I finished my graduation announcements and mailed several 'thank you' cards for my recent trip to NYC.

Now that we're done with testing and have about a week off, we're probably going to explore some local restaurants and maybe do a few fun things while we wait. I'm still in a wheel chair so my goal is to be able to walk by the time I'm admitted to the hospital. I'll be sure to update before I go into the hospital next.

If you're not already following this blog on facebook, you can become a fan by clicking on the facebook link on the right side of this blog. Keep reading and leave comments so I know you're reading! Also feel free to tell me what YOUR reason to smile is for today.

**Reason of the Day: After dinner, while walking back to our room, my mom and I were stopped by a young dad in the hallway. He was grinning from ear to ear and couldn't help but chat us up even though we had never seen us before. At the first chance he got he pulled out several pictures from his pocket and asked if we wanted to see his baby. He explained that he finally got to hold his two-week-old baby for the first time today because he was finally healthy enough. Newborn babies are always a reason to smile (RTS).