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).