Post Transplant (Week 4)

*(Day +20), Monday, (May 31st), is a great day! I was woken up this morning around 6 a.m. by my nurse who told me that my counts had just come back and my white blood cell count had finally jumped from .1 to .2! This is good news because it means that one of the cords is starting to produce more white blood cells. Meaning it looks like my transplant is working. Of course it's too early to be sure of anything but this shows progress and that's very optimistic. The doctors are all very excited by the news. Today I've been in a really good mood despite the fact that my mouth sores are the worst they've ever been. The doctors said that my sores are the most impressive they've ever seen. Which is saying a lot because they've seen a lot of mouth sores. I have one really freaky looking one on the side of my tongue. It looks like there's a chunk taken out of my tongue and there's like yellow stuff in the middle. My nurses and my mom keep trying to convince me to take a picture of it because its so gnarly looking. I refuse to because it's so gross. Thankfully all of my sores are on one side of my mouth so I can still eat as long as I chew with my right side. I lucked out in that aspect. Most of the patients get sores everywhere and that's why they can't eat. I've mostly been blogging at night but today I was so excited about the white blood cell news that I decided I needed to blog early. Other than my white blood cell news, the day has been pretty boring. I ate my usual warm pop tarts and hot chocolate for breakfast. I like following a routine. It makes the days go by faster. I spent the rest of the morning getting platelets and napping because I didn't sleep very well last night. I have a button that I can push every ten minutes that gives me morphine to help with the pain in my mouth and legs and they upped my dose today because my sores have gotten worse. My dose is doubled now. All I have to do is push the button a few times in a row and I basically pass out. I have to be careful because If I click it too much, I start to forget things. Morphine is quite powerful. It helps me sleep at night and get some good rest during the day but it also contributes to 'chemo brain'. It's frustrating to forget things. It's like having Alzheimer's but knowing you have Alzheimer's. If that makes sense. I find myself reading my blog every day just to remember what happened the day before. I also find myself going back and changing things that I've written because I write things that I regret later. Blogging is a mixed blessing right now. It's good because it's helping me remember this experience but I also have to be careful what I say while under the influence of very strong pain meds. Anyways, my mouth is starting to bleed again so I should go hit my pain pump and sleep through the pain for awhile. I'm alone for the afternoon because I made my mom take a break and leave the hospital. Since today is a holiday she didn't have to do any work and I feel bad making her hang around the hospital nonstop with me so I made her leave and go to the Ronald McDonald House for the afternoon. I made her promise she would go shopping at the mall and go to Trader Joe's. It's funny that I have to force my own mother to shop for herself. We'll see if she actually buys anything. At least she's getting a break. That's better than nothing. I did compromise by agreeing to let her pick up my favorite pasta for dinner while she's at the mall. For some reason there's this Italian place in the mall that has a certain pasta that I can't find at any other restaurant around. It's basically just a combination of all of my favorite things in one dish. It's tortellini in this really good Alfredo sauce with peas and prosciutto and mushrooms. I've already had it twice since I was admitted to the hospital. My Aunt brought it when she came to visit and my mom went and picked it up on one of my really bad days. It seems appropriate to celebrate my white blood cell increase with my favorite pasta, right? (I'll find any excuse for that pasta). Ok, I really should go rest now. Hopefully the rest of the day will continue be uneventful. That's the way I like it.

*(Day +21), Tuesday, (June 1st), has been a pretty good day. Unfortunately this morning we learned that my white blood cell count went back down to .1. The doctors don't seem concerned because I guess the white blood cell count jumps around a lot in the beginning. Hopefully tomorrow it will at least be back up to .2 or maybe even higher. We just have to be patient. My day was pretty lackluster, which is okay with me. I'm getting really restless being stuck in this room. I spent most of the day watching season 1 of the OC. For some reason the OC was a show that I never watched so it's perfect to get wrapped up in now. Focusing on a season helps the time go by faster. My mouth sores are still getting worse but the swelling in my legs/ankles is getting better. My weight has gone down a little bit but I'm still wearing my fat girl clothes which is not helping my ego. My mom is getting really good at tying scarves so I've been matching my scarves to my outfit every day. I take that task very seriously. It's the only fashion I have left. I refuse to let anybody see my bald head. I can't decide if I look more like an alien or a pirate. Either way it's not cute. I'm already starting to get some stubble on my head and it's really dark and thick. I hope that's not what my new hair is going to look like. My blood sugar problem seems to be getting better but we still have to count carbs every time I eat which is annoying. I've somehow managed to end up eating close to the same number of carbs every day so my blood sugar is becoming more regular. I haven't really been having any fevers and my blood pressure isn't as high as it was before so overall I feel like things are getting better. I've been stretching and getting out of bed more than they expect because I want to keep my strength up. I'm still showering every day even though I only need to shower every other day. I have an old lady chair in the shower but I'm not even having to use that because I'm so stable. Once my counts get higher, they're going to let me out of my room to walk in the halls. My mom sees new patients getting to leave their room every day and most of them need help walking at first but I won't even need that because I'm already stable on my feet. All of the doctors are really impressed with my strength and mobility. I'm almost scared to say that I'm doing so well because I feel like I'm going to jinx it. Things can change so drastically. I'm just holding my breath and hoping that things stay the way they are. I've been following my liver function very closely because that's what sent us home the first time and delayed transplant. I had so much iron overload that my liver was in great danger. The overload could have easily caused my liver to shut down and that's something that is deadly and can't be fixed. My biggest fear is that my liver is still not strong enough, despite the several months of chelation that I did to get rid of the iron overload. So far my liver is doing fine. I still worry about it, though. My only other complaint is that the pain meds are messing with my head. I'm on a continuous infusion of morphine so I never feel like my head is clear. I also still have the pain pump that I can push. I only push it at night because I need to ease the pain of my mouth sores and puffy legs so that I can sleep. This causes my nights to be really fuzzy most of the time. I find myself waking up at weird hours and watching TV or getting on the computer. I haven't been sleeping much at all, which is very unlike me. I'm usually a big sleeper. Most days my mom actually naps more than I do. I just keep getting so frustrated because I feel like I can't think straight. I still find myself reading my blog just to remember what happened the day before. I also find myself going through my facebook pictures several times a day just to remind myself what I used to look like and that eventually I'll look like that again. My senior pictures are my favorite to look at. It's depressing to look at myself right now- bald and fat and stuck wearing glasses. I don't even bother to put makeup on because it wouldn't make much difference. Ok, that's enough complaining for one day. Don't get me wrong, I consider myself very lucky right now because I am doing well. I hope it stays that way. It's looking like I won't have to be in the hospital for too much longer. We'll see.

*(Day +22), Wednesday, (June 2nd), was a GREAT day. I woke up around 7 a.m. and couldn't get back to sleep because my nurse came in and told us that my white blood cell count had gone back up to .2! My mouth sores were really bad this morning. I have several new sores that have decided to bleed nonstop. It took me three hours this morning to get two of my sores to stop bleeding. Thankfully the sores are still all on the left side of my mouth so I can still eat as long as I keep the food on the right side of my mouth. I had my usual hot pop tarts for breakfast and spent the morning watching more of the OC. I got my usual platelet transfusion late morning and napped until early afternoon. The doctors came by in the afternoon with really great news. My platelet count came back as 22,000! I've been living with platelets less than 10,000 for the past several years. My platelet count hasn't been that high in close to five years. They re-checked my platelet count a few hours later and it had jumped even higher to 30,000! My mom and I just sat in shock for several minutes. Even the doctors and nurses are dumbfounded at how fast my platelet count jumped up. It's amazing to see myself making so much progress so fast. A restaurant called CRAVE catered dinner tonight for everyone and it was delicious. I spent the rest of the night watching the OC and dozing off while on my computer. Again. Oops.

*(Day +23), Thursday, (June 3rd), might be the best day yet! I didn't sleep much last night because I kept trying to blog and then falling asleep. My night nurse (Em) was laughing because every time she would come in my room to check on me, I would be sitting up in bed with my laptop on my lap but I would be asleep. She kept taking my laptop and setting it on my dresser so that I would sleep and then as soon as I woke up, I would take my laptop back and try to continue blogging. I think I finally finished my blog entry at like 6 this morning. Ha. I'm not allowed to brush my teeth because of my mouth sores but I have to use these sponge sticks and salt water to clean my teeth/sores several times a day. They call it "mouth cares". Like I've mentioned before, the doctors keep saying that my mouth sores are some of the most impressive they've ever seen. It's really gross but I find it fascinating and I spend forever just looking at them because they're so gnarly looking. Last night I had a really big sore on the inside of my cheek on the left and it was probably the size of a quarter and it was all bloody. After I scrubbed it for awhile it turned this weird yellow color and then the entire thing just fell out. I literally had a piece of my cheek fall out. My nurse was freaking out because it was so gross. Is it weird that I'm bummed it's gone now? Ha, I'm so gross! Some of the other nurses are really gross too and love to look at my sores too. Unfortunately most of my sores are gone now except for that one I talked about earlier on the left side of my tongue. It's the one where it looks like there's a chunk taken out of my tongue and there's yellow stuff in it. I can't wait for that one to fall out too. That'll be so disgusting. I can't believe I'm talking about gross mouth sores. Too much morphine. Anyways, back to more important/less gross things. We got a call today from the Ronald Mcdonald House saying that we can switch rooms. My mom is over at the house right now moving our stuff. We're moving to the room that is above the room we were in to begin with. My mom just called and said it's a really awesome room. She said there's room for a total of four friends to come if my brother is in town and five people if he isn't. I'll be out of the hospital within a few weeks so I'm hoping that when I get released, my friends will come and visit. They can stay with me for free for as many days as they want and we can actually hang out and do stuff around the house. And someone caters dinner every night and then there are always leftovers and full pantries with free food so none of my friends will have to pay for any of their meals if they don't want to. That means all they would have to pay for is gas money to get here and back. If you split that among four or five people, it's not very much money at all. Have I convinced anyone to visit yet? lol. As you can see, I'm in good spirits today. My white blood cell count is still .2. My liver functions are all still in the normal range (thank god). My blood sugar is becoming more consistent. My platelet count is still 32,000, which is higher than I've been in literally five years. My red blood cell count dropped into the 7s this morning but I've gotten a red blood cell transfusion since then so I'm sure it's higher now. It's so exciting to see my counts getting bigger. This is all so new for me. I feel myself getting stronger every day. It's a nice change from during chemo when I felt my body getting weaker by the day. I spent my morning watching more episodes of the OC and I took a really good nap for once. Now that I've gotten my blogging done for the day, I think I'll probably take another nap and then watch more OC tonight. I'm becoming addicted already and I'm only in the first season. Thankfully there are several seasons so I'll have enough distractions to last me until I leave the hospital. Probably even after. I lucked out today and got two of my favorite nurses. Usually I have 3-4 in a day so it was nice to only have two. For the day, I had a nurse named Theresa. For tonight I get Em again. She's the one who painted my nails. I also had her last night. Ok, nap time!

*(Day +24), Friday, (June 4th), has been a hard day.This will also be the longest post so far. Just warning you. Last night I couldn't sleep so my night nurse, Em, gave me ambien at like 3 a.m. Anybody who has ever taken ambien knows that it's probably not a good idea to take it at 3 a.m. because it makes you pass out immediately and I ended up being really drowsy all morning. That also means that I didn't get up at my usual early time of 7 a.m. (ish). I didn't wake up until we got our daily knock on the door. I don't think I've ever explained this process so I will now. Every morning the doctors come by our rooms to meet and of course the one morning I don't get up early in is the one morning my mom actually wanted to get up at 7. lol. She usually gets up early to take a shower because she doesn't want to miss morning rounds and there is only one shower here on the unit for the parents to use and certain people think it's necessary to stay in the shower until after doing hair and makeup. Which could easily be done back in their child's room. So she has to get up early and hurry before those certain people wake up. Otherwise she gets stuck sitting there waiting for a long time for the shower. Every morning the doctors come by and meet in the hallway outside of each patients' room. They wheel around these things called COWS (computers on wheels) and knock on our door. We never know exactly what time it's going to be but we knew that today a new doctor was starting. There are 9 attending doctors here and they change every two weeks. When I first got admitted for chemo, the attending doctor was a woman named Dr. Macmillan. We really liked her. On transplant day the attending doctor was Dr. Tolar, who is my doctor so I lucked out. Next was a doctor named Dr. Lund. Today the new doctor started and her name is Dr. Smith. I've met her once now and she seems really nice. There are 21 rooms and I'm room 19. The doctors always start with the last room and work backwards so I'm the third room every morning so it's always pretty early. My mom missed the doctors this morning but after that COW session they come back and come inside my room to see me. Today Dr. Smith introduced herself and we just talked about my counts. Today my white blood cell count was .2 again. It hasn't gone down but it hasn't gone up. I'm at day +24 right now and Dr. Smith says that if I haven't moved to at least .3 by day +28 then we should be worried. I'm hoping to be at least .3 (if not higher) in the morning. My hemoglobin was in the 7's during the night but I got a red blood cell transfusion earlier so my counts should be higher now. My platelets dropped from 32,000 to 9,000 which is a bummer but 9,000 is still better than 1,000. My bilirubin counts (there are three of them and that's what tests your liver function) were normal. That's good. That's the first thing I always look at because I'm so paranoid about wondering if I got enough iron chelation. If I didn't chelate long enough then my liver will fail and that's the thing that they can't fix and would cause my transplant to fail. I always exhale the biggest when I see that the bilirubin counts are normal. We also talked about the swelling in my legs and feet that is caused by all of the fluids they are pumping into me. They're going to keep pumping fluids into me but they're also going to give me a drug several times a day that will make me have to pee a lot so I'll pee all of the liquids out. Aren't you glad I told you that? Dr. Smith also looked at my mouth sores and I'm happy to say that they're a lot better today. I just have that nasty sore on the left side of my tongue but the yellow part is gone. There's just some blood in it and the chunk is still missing. Nasty but awesome. :) After Dr. Smith left I ate my usual pop tarts and drank my usual favorite hot chocolate from the lobby downstairs. I spent the morning watching the OC again and I got a platelet transfusion. I napped really comfortably until the afternoon because I'm still on a high dose of morphine so after a couple of pushes my legs and mouth feel numb enough and I can sleep well. We're still counting carbs because of my temporary diabetes but I didn't have very many carbs for breakfast and lunch today . After lunch my mom's old debate coach came to visit. He works as a professor of communication studies here on the University of Minneapolis campus so he came by after class to hang out and meet me. I really like when I have visitors. We spent the afternoon talking about debate stories and memories. I also told him about my freaky cheek thing yesterday. He thought it was pretty gross. After he left my mom went out and got Applebee's for dinner. My carb count is still low for today so I'll probably have pop tarts tonight after my shower and then watch more of the OC until I fall asleep. I like when my carb count is low. It makes me feel like less of a fatty. I'm still wearing my fat girl clothes. I'm still bald. This leads me into explaining my breakdown of the night. I was on facebook and just randomly started crying. I couldn't stop. My mom left the room so I could just cry. Anybody who knows me knows that I'm famous for saying "sometimes I just need to cry". It was one of those nights. I was looking through my friends' pictures on facebook and just had a breakdown. Everything just hit me. I'm so mad that I was diagnosed with Aplastic Anemia. I'm so mad that it was me. I'm mad that it ruined my middle school and high school experience. I'm mad that it impacted/limited my ability to compete in debate. I'm mad that it impacted/limited my ability to take hard classes. I'm mad that I missed a lot of school. I'm mad that I had to do homebound for part of my schedule. I'm mad that I had to work my ass off to get a 4.8 for my senior year. I'm mad that things weren't easy for me. I'm mad that I missed so much school for transfusions. I'm mad that my body has bad reactions to transfusions. I'm mad that I missed out on the simple things like riding bikes and jumping on trampolines. I'm so mad at this disease. I'm mad that I didn't get transplanted faster. I'm mad that I couldn't be transplanted sooner. I'm mad that nobody cares about Aplastic Anemia or Dyskeritosis Congenita because it's so rare. I'm mad that I have these two rare diseases. I'm mad that I'm sick. I'm mad that I have to go through this transplant right now. I'm mad that I couldn't stay and finish the debate season. I"m mad at myself for not being strong enough to finish the debate season. I'm mad at how I left. I'm mad that I couldn't stay and compete for forensics season.I'm mad that I had to miss out on parts of debate camp because I had to drive home and get transfusions. I'm mad that I had to sleep in on some of the days of camp because my body just didn't have the energy to keep up with everyone else. I'm mad that I had so much iron overload. I'm mad that we moved all of our stuff up to Minneapolis in December and then had to come home. I'm mad that I was so sick I couldn't return to school when I got home. I'm mad that I had to be on the iron chelation medicine 24/7. I'm mad that it made my stomach so sick. I'm mad that I was throwing up almost every day for several months. I'm mad that my doctor let my iron overload get so high in the first place. I'm mad that I accepted presents from everyone and then ended up not transplanting so I looked like a liar. I'm mad that I had to give up the idea of dating because it's not fair to ask somebody to stick around for you and worry about you while you go through a transplant. I'm mad that I had to miss out on part I'm mad that I had to go through chemo. I'm mad that I had to take medicines that killed my immune system. I'm mad that I had to go through radiation. I'm mad that I had to be in pain. I'm mad that my mom has to do everything for me because I feel so guilty. I'm mad that I can't leave my room. I'm mad that my white blood cell count is only .2. I'm mad that my platelets are only 9,000 now. I'm mad that my hemoglobin was only in the 7s. I’m mad that I'm here. I'm mad that I missed being at graduation. I'm mad that the live feed messed up and I couldn't hear my name read live at graduation. I’m mad that the tape of graduation isn’t here yet. I'm mad that I missed the debate banquet. I'm mad that they ignored me at the debate banquet (except for tara). I’m mad that I was the only senior not to get an award at the banquet. I'm mad none of my friends have come to visit me (even though I shouldn't expect them to). I'm mad that I had to fill out my will at the age of 18. I'm mad that I missed prom. I'm mad that I could die at any time. I'm mad that I have to go through this. I’m mad that I have to worry every day. I’m mad that I’m in pain. I’m mad that I’m missing out on all the graduation parties. I’m mad that I’m missing this summer. I'm mad that I'm fat. I'm mad that I'm bald. I'm mad that I gained 20 pounds in four days. I'm mad that I have temporary diabetes because of all the steroids. I'm mad that I have to count carbs. I'm mad that I have mouth sores that hurt. I'm mad that my legs are so swollen from all of the fluids they are pumping into me I'm mad that I have to get up twice an hour to pee because of all of the fluids they are pumping into me. I'm mad that my nose won't stop bleeding. I'm mad that my eyes are blood shot. I'm mad that my leg hairs didn't fall out. (that one is kind of a joke). I'm mad that I have to take so many oral meds even with my mouth sores. I’m just mad. Thank god for zoloft. Lol. I promised you honesty in this blog through the good, the bad and the ugly. This is the ugly. I hope you can handle it. I know it's hard to read this but please don't get me wrong, tomorrow I will be better. I have faith. I just needed to get that out of my system. I know everyone else has problems in their lives too but I hope that everyone takes a good look at themselves before they go to bed tonight and just know how thankful you should be for all of the health and happiness in your life. Despite my breakdown tonight, I still consider myself to be in strong spirits. This was my longest post yet. I’m going to try to get some sleep now. Goodnight.

*(Day +25), Saturday, (June 5th), was a pretty mundane day and I'm okay with that because I needed it. I was up until 3 a.m. watching season 2 of the OC because I couldn't sleep. I've been really shaky today and during the night for some reason. I think it's just that I can't find a comfortable temperature in these rooms. The rooms are so dry because of the strong filtration system so it makes the temperature fluctuate a bunch. I slept in later this morning but my mom woke me up around 8 a.m. to tell me that my white blood cell count has jumped to .3! Now I just need to get to .5 and stay there so I can go in the halls. That will put me one step closer to getting to leave and go stay at the Ronald McDonald House. I spent my morning eating my typical warm strawberry pop tarts and watching more OC. My mouth sores are much better today. The gross yellow patches have healed and I only have a few bloody ones left on the left side of my mouth. They look bloody but aren't bleeding, thankfully. I am getting more sores down my throat that you can't see and they hurt and make me sound like a man but it just feels like I have a really bad cold or something. The doctors came by with their COWS (computers on wheels) outside my room like they do every day and didn't really say anything new. They just talked to my mom about my white blood cell count going up to .3! Then Dr. Smith came by later on to see me like usual and again, didn't really say anything new. No complications today except for the usual: low platelets, puffy ankles/feet and sores in my throat. No changes were made except they upped my morphine some more because my throat sores are worse. I only push it at night a few times in a row and then during transfusions a few times in a row so that my mouth and legs will get numb enough for me to sleep. I don't like to push it during the day because it makes me too groggy, like I've said before. I started to get restless around noon so I got out of bed and did some exercises. The physical therapy people come by every few days to make sure that I'm doing my daily exercises (which consists of me getting out of bed three times a day. lame.) So I've just started getting out of bed whenever I'm not sleeping or eating. That way they don't hassle me. They gave me this machine that is like portable bike peddles. I sit in my chair and I do ten minutes biking forwards, ten minutes biking backwards. Then I put the peddles up on my hospital desk thing and I do five minutes with my arms going forwards and five minutes with my arms going backwards. Doing the peddles actually really helps to stretch out my muscles in my shoulders/back and in my knees/ankles. I got a platelet transfusion this morning around noon. They got here right when I was done working out so I took a nice nap during my platelet transfusion because of the benedryl they gave me. I had a good lunch and then I took a nap while my mom went out shopping. She came back with more fat girl clothes and cupcakes from that cupcake store I love! They rotate the types of cupcakes they make on certain days of the week so today I got a mini very vanilla cupcake, which is my favorite because the frosting is really really good homemade whipped cream. I'm very picky about my frostings. I also got a mini tiramasu cupcake. I'm also very picky about my desserts and tiramasu is my favorite desert in the world. The last mini cupcake I got was the Smores cupcake. This cupcake is a grahm cracker cupcake with chocolate nutella in the middle and marshmellow fluff on top. This place is awesome and always makes my day better. I had a nice low carb day so that I could indulge in these mini cupcakes and still be over 100 carbs less than I have been for every other day I'm also tracking how much I drink and I keep drinking more every day because they want me to be drinking a lot before they will take me off my fluids and let me leave the hospital. Plus the more I drink the more I pee and the less my feet swell. Yes, I just talked about pee. My swelling always gets worse at night after I shower because of the strain it takes to take a shower. I'm getting better, though. I have one of those old lady chairs in the shower but I only use it to balance myself while I scrub my swollen feet and legs. I'm very careful to get really really clean every night because I'm so paranoid about infections. I've gone through an insane amount of soap. lol. Thankfully my english classmates got me tons of fun shower gels. I also change my sheets and pillows every night to keep everything as clean as possible. I'm pretty OCD right now. Better safe than sorry, right? Alright well tonight is going to be pretty mundane also. I'm not scheduled to get any platelets tonight because we're waiting to see what my platelet count is in the morning. I'm also not getting any red blood cells tonight because my hemoglobin was in the 9's. I'm just going to go take a shower now and then my night nurse will check all of my counts around 3 or 4 a.m. and I'll hear the news in the early morning. We're praying for .4! Or maybe even .5! Fingers crossed! Also, the guessing pool for what day I'll be discharged to go to the Ronald Mcdonald House is now closed. No more guesses. We'll see who wins! Goodnight all.

*(Day +26), Sunday, (June 6th), has probably been the weirdest (but not scariest) day so far. We did get some great news this morning at 6 a.m. when we learned that my white blood cell count jumped to .4. We need it to get to .5 before I can leave my room so we're getting closer. Once I hit .5 for five days then we're going to start testing my anc counts. Once my anc starts growing then I can leave the hospital. It's moving slowly but we're getting closer every day! I've decided to start ordering room service again because almost all of my mouth sores are gone so I can eat a wider variety of things. Plus then I don't feel guilty because my mom doesn't have to make me food. For breakfast I had a surprisingly good omelet, hash browns and fresh fruit. All of that was only 70 grams of carbs. Two pop tarts are 76 grams of carbs. Isn't that funny? As you can see, we're still counting carbs because of my temporary diabetes. Thankfully it's been getting a lot better and I'm not having to get very much insulin anymore. Some meals I don't need to get any insulin at all which is great because that means it’s going away. My mom met with the doctors in the hall for the morning COW rounds and then came in just to tell me that not much was changing today. She went to take a shower and I ate breakfast. My morning was spent watching the OC....of course. I think my mom is starting to get sick of it. And today was Sunday so she wasn't working so I probably should have let her watch TV. Oops. After her shower my mom took a nap so I turned off the lights and just continued to watch the OC. I was on my computer playing games and all of the sudden I felt unusually groggy. As I've said before, they have morphine constantly running into my body at a low continuous rate and then I have a button I can push every ten minutes that gives me a bigger dose of morphine. I only use the morphine when I'm in pain and want to sleep because otherwise I'm super groggy and only half awake. So when I got unusually groggy I was confused because I hadn't been hitting my morphine button. All of the sudden I felt like I was going to pass out. I turned to my right and looked down to the floor of my bed and saw a massive puddle of blood. It was dripping out from one of the many tubes I'm hooked up to. I looked up at the pole that I'm constantly connected to because I thought maybe they had started a red blood cell transfusion when I wasn't paying attention. There were many bags of medicine hanging but no red blood cells. So where had the blood come from? Me. My hickman, which I've blogged about before when I got it placed right before starting chemo, (go here if you can't remember what a hickman looks like. Mine is located on my chest about the same height as my port scar but on the left side instead of the right. It looks just like the picture but the tubing is purple instead. Kinda cool. I get it taken out when this is all over and it won't leave a scar like my ort did.) Anyways, the hickman is how they tube all of my medicines and blood into my body. They can also draw blood from the hickman. Apparently one of the tubings came loose and when it did that, it caused my blood to start pouring out. Nobody had been in my room for 45 minutes so I could have been bleeding for up to 45 minutes at the most. My red blood cell count was in the 9's this morning, which is pretty good. They quickly checked my red blood cell count after I saw the blood and I had dropped down to the 6’s, which is bad because I get transfused if I fall below 8. Thankfully I was in the 9's because if I had already been in the 6's, I could have dropped to some ridiculously low number. The lowest I've ever been was 5.2 and that was in the ER and the blood bank freaked out. Dr. Smith and her team all happened to come in right as all of this was happening, just my luck, and then they freaked out and I had several nurses rushing in to help so my room was full and things got really chaotic. I got really light headed and nauseous from all of the blood everywhere so I just sat in bed and started to cry because I didn't know what to do and it freaked me out. The puddle was so big that it had reached all the way under my bed and hit my favorite pair of pink slippers. Except the slippers aren't pink anymore. They're soaked with red blood. We had to throw them away. I'm very sad because old navy doesn't have them anymore. :( I guess I'd rather have the pink slippers be the casualty of the day as opposed to me. So obviously the blood bank rushed to get me two bags of red blood cells to pump back into my body. After that, we pumped a bag of platelets into me to help my counts. I haven't heard what my counts are now but I know that my white blood cell count was not affected and is still .4. Thank god. And I'm not getting anymore red blood cells or platelets tonight so my counts must have been good enough after the transfusions. All of this started around noon and I just finished getting all of my transfusions at 6 p.m. Busy day. I did take a nap from noon- 2 p.m. because I was so overwhelmed by everything that had happened. I slept really well because they gave me a ton of Benadryl by IV to make sure I didn't react to all of the blood and platelets. I woke up and ate lunch at 2. Irene, our care partner that I've mentioned before, came by today while we were eating lunch to visit. She got to hear all about our crazy morning and we just chatted for a while. She left around 3 p.m. I thought I was going to take another nap but ended up watching more OC and taking all of my nail polish off. It had already started to chip so I'm going to put a base coat, color, then top coat and then hopefully they'll still be perfect when Em works again in a few days and she can do her flowers again and I can put a top coat on it and take a picture before it gets messed up since I didn't last time. It's only 8 p.m. and I'm already done blogging. This might be a record. I'm determined to get my shower and everything done early tonight because every night I end up keeping my mom up until like 1 a.m. and I don't think she likes that. lol. My mom napped and read for most of the day. We are starting to get more comfortable with each other and we're joking around a lot. My nurses always comment about how they like to hang out in my room and hang out with us because we're fun. lol. My mom got up around 7 p.m. and drove out to the Mall of America. She has implemented a rule that I can have my favorite pasta from Tucci Benucch every Sunday night. This worked out well because my day was so crazy. My pasta is exactly what I need right now. She should be back any minute with dinner so I'm going to finish up this blog. Other updates for the day: I'm getting really good about eating less carbs every day and drinking more fluids everyday. Both of these things make me feel better about myself and make me healthier. I'm still getting lots of fluids and medicine to make me pee a lot so that the fluids don't make me swell. They want to keep me from swelling but they need to keep my hydrated so that the meds will work. My feet are a lot less swollen today but I'm having some tightness and pain in my knees/muscles. I've been using my pain pump a little bit today. My weight has gone down but I'm still much higher than my normal weight. Definitely NOT 200 pounds anymore. Thank god. I'm still bald but I'm starting to get some stubble. It looks dark to me but my mom said it's blonde on top. I'm hoping for the blonde. I'm still experimenting with scarves and my mom has found several good ways to tie them so I've been wearing all of the scarves that people have given me. If my face becomes less puffy, I might be tempted to post a picture in the near future to show you the cute styles we've come up with. Maybe. I'm in much better spirits today, as you can see from my insanely long blog post. I'm quite chatty. Plus it was a crazy day. I need to get out of this room. My mom should be here any minute with dinner so I will end this blog. Check up on me tomorrow when I start week five!

**Reason of the Week: Like I've explained before, they have a system up here where you can make a "team". This is a list of nurses that you've had and like and want to to have on a regular basis. If you ask them to be on your team and they accept, then the charge nurse tries to schedule them to be your nurse when they work. People work different shifts so I usually have anywhere from 2-4 nurses per day and I've picked out a few nurses that I like for each shift. The charge nurse has gotten really good about giving me people on my team as opposed to random nurses. (we had some problems at first where I kept getting nurses that I hadn't put on my list. which is annoying because it's nice to see the same faces on a regular basis.) Everyone on my team is really awesome and nice and I'm starting to build relationships with all of them. Great nurses are always a reason to smile (RTS).

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).