Post Transplant (Week 10)

*(Day +62), Monday, (July 12th) has been another great day. I had an appointment at clinic this morning at 10 a.m. just to get some labs drawn and meet with Dina, a nurse practitioner. Afterwards we came back to the house and ate lunch outside because the weather was so beautiful. I spent the afternoon napping and catching up on emails and blogging. It was a nice, low-key day. I didn't get any transfusions today, which was great. We also ate dinner at the house and then I skyped with my dad and siblings. I haven't seen them in about a month so it was nice to talk to them. THey're coming up this weekend for their monthly visit. I'm excited to see my brothers. Both of them have birthdays coming up so we plan to celebrate their birthdays while they're here. I'm feeling so much better. I have more energy and I'm napping less. I've even been walking to my appointments. It's not very far from the house but it takes about 10-15 minutes to walk there. It hurt to walk that far at first but every day it's getting easier. I'm not having any pain except for my legs/feet. I'm still about 15 pounds heavier than my normal weight. Now that I'm out of the hospital I should drop the weight pretty fast because I'm not having fluids pumped into me 24/7. Right now my feet are so swollen that I can't even wear real shoes. I have to wear slippers everywhere. Hopefully the swelling will go down soon. Other that that, all is good.

*(Day +63), Tuesday, (July 13th) was an exhausting but fun day. I didn't have to get a transfusion or go to clinic for any reason so it was our first day off. I slept in and then we went to meet our care partner for lunch at my favorite italian restaurant in the Mall of America. We did an early lunch so the restaurant was empty, clean and somewhat germ free. (Here's hoping). Everywhere we go I bring hand sanitizer and wipes so that I can keep my hands clean and we can clean chairs and tables that we sit at. That, combined with my mask, will really help to minimize my chances of picking up viruses- which is our biggest threat right now.After lunch my Mom and I did some shopping. I've been pretty down on my self lately because of all the weight gain so it was nice to shop and buy some new, fun, summery clothes. Now it's just more motivation to lose weight so that I can look super good in my new clothes. My mom and I also went and saw Twilight. The theater was pretty much empty so I wasn't freaking out about germs. I still have to wear my mask everywhere that I go (except for when I'm eating) but I don't really mind it. It does attract attention, which is annoying. Like, what is there to look at? Have people never seen a girl with a scarf and mask? It's called chemo. It happens. It's not like I have some growth on the side of my face or a third arm. I don't understand what the excitement is. I've found that people around my age try very hard to look away so you know they aren't staring at you. And little kids are the ones who turn to their moms and say "mommy, why is she wearing that?" without realizing you can hear them. But my favorite are the old people. Old people don't even bother to try to be discreet. They'll stare straight at you and not even care that it makes you uncomfortable. For example, After Twilight my Mom and I went and tried this Crepe place in the mall that I've been dying to try. I got a crepe with cinnamon sugar and ice cream. It was delicious. I was sitting at the table and I look over and see a family and the dad is just staring at me. Not even in a curious way. More of a "you're a freak show" type of way. I don't get it. I understand curiosity. But I don't really like being stared at and whispered about. At first I wasn't going to bother getting a wig because I didn't think it would be that big of a deal but after that, I've decided to look into getting a wig. We have an appointment to look at wigs tomorrow afternoon. After Crepes we went back to the RMH and I just took it easy for the rest of the day. My feet are still swollen so they were hurting pretty bad from all of the walking. I feel my body getting stronger the more that I move around so even though it hurts, I know I need to stay active.

*(Day +64), Wednesday, (July 14th) was a relaxing day. I had to go to clinic in the morning to get a platelet transfusion but after that we didn't have anything planned so we just came back to the house. On wednesdays they do cook-out lunches at the RMH so we ate lunch and talked with some of the other housemates. My mom has been quite the social butterfly while we've been here. She's become friends with almost all of the parents. In a way, it's nice to build relationships but it's also hard because some of their kids aren't doing well and you get emotionally attached to them. Almost every family has some form of a blog and we all read each others' blogs, too. There's one little girl here who is absolutely adorable. She just had a transplant and things seemed to be going well but her dad just updated her blog to inform everyone that she has developed VOD (the liver failure disease that is 90% fatal, the one that I was at risk for and the reason I had to delay transplant). My heart breaks for her and her family. Throughout transplant, VOD was my biggest fear. Even though we worked hard to get all of that extra iron out of my liver, I always feared it wasn't enough and that I would develop VOD. So far, I've managed to avoid it and it looks like I'm out of the woods in terms of developing VOD. But to hear that she has it is so heartbreaking. How do you face a family after hearing something like that? There was another boy on the unit who I had heard of. I won't say his name but he always wore a cowboy hat around. My mom used to tell me about how much fun he was having driving on the bikes in the hall. I just found out he passed away. It's so hard and surreal to know that you're just doors away from patients who aren't going to make it. Thankfully none of the patients I've talked to have passed away but you always run that risk. It's scary. It almost makes me feel guilty for doing well. At lunch on wednesday we ate with a mother of a girl who is around my age. The girl isn't doing so well. Her mom asked how I was doing. I felt horrible just telling her that I felt great, knowing that her daughter was having such a hard time. My mom keeps encouraging me to make friends but I'm scared to. There are several teen girls being transplanted right now. One is 17 and is already out of the hospital so we talk sometimes. One is somewhere around my age (the girl with the mother we talk to) but she's still in the hospital so we haven't been able to talk yet. One is 20 and she's still in the hospital but I talk to her mom and I talk to her on facebook. She should be getting out of the hospital soon so we can hang out. There are a few other girls around our age but I haven't talked to any of them yet. It'll be nice when they all get out so we can all hang out but I just hope that all of them get better because I don't know how I could handle something happening to one of them, even though we aren't friends yet. It's such an interesting environment to be in. Everyone is so loving and generous but there's an undertone of fear and pity. It's like one big family here, which is great because it creates a support system. But it also creates heartbreak every time we lose someone- which is more often than anyone would like.

*(Day +65), Thursday, (July 15th) was a boring day. I wasn't feeling very good so I mostly slept all day. I really only left our room at the RMH to go downstairs for dinner. It seems like I have a few good days and then I wear myself out and have to rest for a few days. It's hard to find the right balance. It's frustrating because my mind wants to get out and do stuff and be active and live again but my body just can't handle it. I never thought I'd say this but....it's hard to be lazy. Being on campus also makes it hard because every day I see these college kids outside playing volleyball and having cookouts and going swimming and I can't do any of it. I feel lame. Nobody likes to feel lame.

*(Day +66), Friday, (July 16th) was a fun day. We started off by going to the National Cancer Society so I could pick out a wig. All along I had thought I didn't want a wig because I didn't want it to look fake and I have to wear a mask everywhere anyways so people would stare regardless. However, after going out with my bald head and mask, I discovered that way too many people don't have the best manners and don't mind staring. So, I decided I'd give a wig a try. I tried on some wigs that were the same color as my original blonde color but they were all either too long or too fake-blonde. Then I tried on some reds for fun but I looked ridiculous. Finally I found a brunette wig that looks really natural. It's straight and short and it has bangs. It doesn't really look like me but it's better than being bald. All of the different styles of wigs have names and the style I chose was "Karina". Karina has been very kind to me so far except for making my head sweat in the Minneapolis summer heat. When Karina is not on my head, she resides on top of a cowboy hat so that she keeps her shape. Afterwards, my mom and I went to this really cute french restaurant. It was delicious. That night I mostly just worked on cleaning up my loft and waiting for my family to get in town.

*(Day +67), Saturday, (July 17th) was a crazy day. I had to be at the BMT clinic at 8 am to get a platelet transfusion but of course the platelets weren't ready so we sat around for about an hour. Afterwards I went back to the RMH to get ready because my family was in town. My dad, stepmom, two stepsisters, brother and half brother all went to the Midtown Global Market for lunch. I've talked about the MGM before, but it's basically this huge building filled with stalls where people sell food and goods from all over the world. My dad and stepsister, Bre, ordered from a mexican restaurant. My stepmom and I both ordered from a seafood place. Jameson ordered from a Jamaican place and my other stepsister, Brittany, and my half brother, Ethan, both ordered from a chinese place. Ethan's plate of rice and chicken was bigger than his face and he spent a good half hour picking up wads of rice and shoving them in his mouth. By the time Brittany and Ethan were done eating, it looked like they hadn't even made a dent in their plates. Although, I think Ethan ate more than Brittany. The kid loves his chinese food. Afterwards we shopped a little bit and then came back to the RMH to hang out in the arcade room. Ethan fell in love with the DDR machine. By the end of the day I was absolutely exhausted and pretty much passed out immediately.

*(Day +68), Sunday, (July 18th) was Jameson's 14th birthday. My family left in the morning but Jameson stayed behind and is going to stay with us for a few weeks. Unfortunately, I wore myself out the day before so I was a party pooper on Sunday. Jameson opened all of his presents and then spent most of the day playing on his new xbox 360. I was still feeling miserable later in the day so they went to his birthday dinner without me. I don't think he minded having some time alone without me.

**Reason of the Week: I bought some new clothes this week at the Mall, even though I was still way above my normal weight because of all the fluids, and now they are starting to fit. Any ounce of normalcy is always a reason to smile (RTS).

Post Transplant (Week 9)

*(Day +55), Monday, (July 5th) was not a very good day. Turns out I have meningitis and pneumonia. They've put me on antibiotics to fight it but I'm nervous about both. I haven't had any more fevers so I'm hoping that means the antibiotics are working. I've also started gaining water weight again. When I left the hospital it only took me like three days to get back down to my normal weight but as soon as I was re-admitted they started giving me too much fluid and I gained ten pounds in one day. Just in water weight. My feet are so swollen I can't fit my shoes on. I have to wear slippers or flip flops. None of my regular clothes fit so I'm back to wearing my fat girl clothes. I look like a pregnant woman. My head still hurts but I'm trying to take less pain meds so that I can get out of here faster. I'm really getting sick of being stuck in this room.

*(Day +56), Tuesday, (July 6th) has been a great day so far. I got up around 8:30 and ordered breakfast. I took all of my morning meds and got my labs back. My counts are looking great. My platelets were 16,000 (my normal before transplant was 4-6,000). My Hemoglobin (red blood cells) was 9.3 (my normal before transplant was 6-7). My ANC was 3300, which is in normal range! My white blood cell was also 4.6, which is in the normal range too! It's so great to see my donor cells making progress and growing. My cellularity is normal (from donor cells) and the donor cells seem to be taking over nicely. The only downside is that I still have pneumonia and meningitis. Thankfully I haven't had fevers for awhile and I'm on antibiotics so I'm not contagious. I'm also still having problems with the swelling in my legs and feet. My headache still isn't gone but it's getting better and I'm hoping to leave the hospital in the next few days.

*(Day +57), Wednesday, (July 7th) was a great day. My counts came back and they were all really good. We also got the results from my second bone marrow biopsy. My results showed that I'm 100% donor cells from one donor. Meaning one of the donors has taken over 100% and is now producing cells. This basically means the transplant worked! I still have to deal with infections and meningitis and pneumonia but this is very encouraging. I felt really good today. I even walked down to the lobby and outside to the mailbox to mail something. I got some funny stares as I walked by with my bald head, hat and pole with all of my machines. I'm starting not to care. I've also been walking laps around the unit to get some exercise and show the docs that I'm ready to leave. Sometimes I don't even bother to cover my bald head. I'm starting to get some fuzz but it's hard to tell what color it's going to be. I'm hoping for blonde. We'll see.

*(Day +58), Thursday, (July 8th) was another great day. I got up early and made my own breakfast and got my own laundry. The doctors decided that I'm doing well so they gave me a pass to leave the hospital for a few hours. This was perfect because we had some friends coming in town. I started talking to a woman from New York named Elizabeth who has a 7 year old son named Alex who also has DC and is getting ready to transplant within the next year. They flew out here to meet with Dr. Tolar, who is also my doctor, to talk about transplant. I've grown close to them so my mom offered to pick them up from the airport this morning. She brought them back to the RMH and then they took our car out to the Mall of America. We met up with them for dinner at the RMH. The dinner was really good! Someone caters food every night and some nights are better than others. Tonight they had ribs, grilled chicken sandwiches, cole slaw, tons of fruit, homemade mac and cheese, tons of sweets and drinks. After dinner Alex and I went and played in the Arcade room. Alex beat me. Then we played bingo. They have an actual bingo machine and tons of really cool prizes. I was the only one at our table who didn't win anything. That's okay, considering all of the prizes were barbies and action figures. It was really nice to be able to get out of the house. Except for the puffiness and weight gain, I feel fine. I'm hoping to get a pass to leave tomorrow too so that we can take them to Midtown Global Market. We went there before transplant and I blogged about it with pictures. Hopefully I'll get some pictures tomorrow if they let me leave. Everything seems to be going well today, hopefully it continues.

*(Day +59), Friday, (July 9th) was an awesome day. I woke up and had breakfast and took all of my meds early. The doctors agreed to let me leave from 2-8 pm so I did my makeup and got ready to leave. I had to get a platelet transfusion in the morning and then Alex, Elizabeth and her Mother came over after their consultation to visit. Then we went to the Midtown Global Market. I blogged about it before when we first went so go back and read that blog if you don't know what I'm talking about. For lunch, I had a crab cake burger from the seafood stall and I had chips and homemade guacamole from the mexican stall. Kind of a weird lunch but soooo good. For dessert, I finally tried a churro from a mexican bakery stall and I also had a scoop of italian ice from that stall. I got half a scoop of cherry and half a scoop of lemon. It was delicious. I also bought some more bracelets that were hand made by women in Ghana and the money goes back to them. I got a hot pink braided bracelet and a bracelet that is woven with my name on it. I also bought an eco-friendly t-shirt. Last time I bought a bamboo shirt but it shrunk in the washing machine because we didn't know it should be hand washed. This time I got a shirt made out of Modal, which is made out of beech trees. It's supposed to be very eco friendly. I also had them personalize it by getting "reason to smile" printed on it. I'm really excited about it. Here's a picture:

After the Market we went back to the RMH for dinner. We lucked out and had another really good dinner. They catered pulled pork sandwiches, corn on the cob, pasta salad, fresh fruit and drinks. It was really good. Then Alex and I started to watch a movie in one of the living areas but I fell asleep on the couch and ended up taking a nap. We decided to go back to the hospital around 7:30. We said our goodbyes and took some pictures together.

It's so weird, we just met them but I feel like I've known them all my life. We'll definitely be keeping in touch. That night I took an early shower, took my meds and watched some OC. I'm on season 4 now. Next I think I'm going to start watching Felicity. Someone let me borrow their season 2 of Felicity but I don't have season 1. Anybody have season 1 of Felicity that I could borrow? Anyways, It felt so good to get out and walk and act normal. I wore normal clothes but I still had to wear my mask, a hat, and flip flops because my feet are too swollen for real shoes. I got some stares but I didn't really care. I was just happy to get fresh air and drive in a car. It was really weird to be in a car after so long. My mom was going 35 mph and I felt like we were speeding down the street. It's so weird to think about the fact that I haven't really had fresh air or been in a car since april. It's not like riding a bike, it felt weird to be out. But I loved it. I'm getting discharged tomorrow so I can go to the RMH. I can't wait!

*(Day +60), Saturday, (July 10th) was another great day. I woke up early and had breakfast and waited for the doctors to come by. When they finally made it to my room they said that I could be discharged. It took awhile to get all of the paper work done and I had to get a platelet transfusion and a red blood cell transfusion so I didn't actually get to leave the hospital until around 5:00 pm. We went straight to the RMH and had dinner, which was super good. Then we went to our room and I spent the night setting up my stuff. Our room is really cool and we have this loft that I've claimed as my bedroom. There are two twin beds, a tv and some drawers and stuff. I've really spiced it up with pictures of NYC and plenty of pink and some other personal stuff. The loft will be my room. There's also a bedroom on the main floor where my mom will sleep so I don't have to hear her snore. It's weird to sleep by myself. I've been sleeping a few feet away from my mom since april. It's nice to have some peace and quiet while I sleep. The only annoying thing is that the bathroom is on the main floor so I have to climb down a spiral staircase every time I have to go to the bathroom. This is very inconvenient during the night when you're half asleep. Anyways, that's about it. I'm feeling closer to normal than I ever have. My twitching is getting better and I'm not nearly as tired as I had been. I still have a bunch of water weight, I'm about 15 pounds over my normal but it shouldn't be long before I get that weight off. Well, that's all for today. Tomorrow we're going to attempt to go into the real world for brunch and a movie so I'll update you on how that goes.

*(Day +61), Sunday, (July 11th) was another great day. I finally got out into the real world! We got up early and went in to clinic so I could get a platelet transfusion. After that, we went to this restaurant called Hell's Kitchen for brunch. It was really cool. They had a live band and everything. Here are some pictures: (including the first picture of me with no hair)

Picture of part of the restaurant

Live band

Me with some delicious hot chocolate

Me standing next to a sign that says "Welcome to Hell"

After brunch, we walked over to target. Minneapolis is the home of target so all of the targets are pretty outrageous and huge. This one happened to be multiple stories. I bought two dresses and a jumper. My goal is to lose all of my water weight so I can wear them. Here's a picture of the target:

After our target adventure we headed back to the Ronald McDonald House so I could take a nap. We ate dinner at the house and then went to see Sex and the City 2. Unfortunately, I didn't like it very much. I'm a true SATC fan but the movie was a little over the top and some of the outfits were awful. Oh well, SATC still has my heart. We got lost on the way back so we ended up getting in pretty late so I took my meds and took a shower and went to bed right away. I was pretty tired from my big day out. It felt so good to get out of the house and into the real world. It's a little awkward to walk around with a mask on and a hat or scarf. I got a few stares, mostly from little kids. One girl in target turned to her mom and said "mommy, why is she wearing a mask?" and then kept staring at me. I guess I don't mind, they're just curious. It just kind of makes me feel like a freak show. I'm sure I'll get used to it. This is sunday so stay tuned for a new post of week 10!

**Reason of the Week: Elizabeth, Jane and Alex visited this week and I'm so glad that they did. I'm in desperate need of visitors and having them come was such a blessing because it felt like family was visiting. I really needed it. It was hard to say goodbye to them. Visitors are always a reason to smile (RTS).

Post Transplant (Week 8)

*(Day +48), Monday, (June 28th) was like it never happened. I woke up long enough to swallow pills and eat at some point. Still battling fevers, muscle pains, stomach pains and a killer headache. The only excitement was me waking up in the middle of the night to throw up everywhere. Not pleasant.

*(Day +49), Tuesday, (June 29th) has been another crummy day. I'm still on pain meds for my headache. It makes it impossible to do anything. I'm sensitive to light, sound, motion and just about everything else. Thankfully my stomach is doing better and I was able to catch up on all of my pills and I even ate two meals. The doctors have decided they want to do a spinal tap tomorrow because they think I might have Meningitis. If I do and they catch it now, they should be able to treat it. Both of my parents don't want me to do it because of my bleeding risk and because spinal taps are dangerous for anyone, especially with my heightened bleeding risk. All the other doctors (except one) think I should do it. Including my doctor, Dr. Tolar. I've decided I'm going to sleep on it and make the decision in the morning. If I say yes, I might not be online for awhile so don't freak out!

*(Day +50), Wednesday, (June 30th) has been a busy day. I had to get another bone marrow biopsy. If you don't know what a bone marrow biopsy is or you want to job your memory, look back to week five. It's the June 22th post. After that, I immediately got a spinal tap. I was a little worried because I've never had one before and I've heard it's pretty risky and there's a chance of internal bleeding (which is a bigger risk for me because of my inability to clot well). They wanted to do a spinal tap because my headache, stomach pain and fever have come back and they think I might have meningitis. My mom and dad said no. The doctors all said yes except for one. I ended up saying yes. I'm glad I did because the early results are already showing that it is meningitis. Now we have to wait a few more days for the results that will tell us whether is bacterial or viral. For my situation (being immunocompromised) we want the results to be bacterial because then it will respond to meds. If it's viral, we have to let it run its course and hope everything works out. I'm very glad that we ended up doing the spinal tap because we got some answers. Oh, the joys of being 18 and able to make your own decisions.My back was pretty sore. I still had a little soreness from my last biopsy, plus the new one and the spinal tap so I spent the morning resting. Our care partner, Irene came by to sit with my mom during the surgery because we were all nervous. She also brought bagels from my favorite place here- bruegger's bagels. I slept more in the afternoon. For dinner, my mom went to this restaurant called Kafe 421. We went there once before I was admitted and it was really good. This time I tried one of their pastas and it was delicious. Definitely better than cafeteria food. I was pretty cranky but ended up feeling much better after showering. That's about it. Just waiting for answers and waiting to get better so I can get out of here. On a happy note, Today is +50, which means I'm halfway done! Technically I'm more than halfway because I've been here since late April and I was admitted to the hospital on April 30th. Close enough.

*(Day +51), Thursday, (July 1st) has been on okay day. Highlight of the day: My red blood cells (hemoglobin) was 9.2 so I don't need a red blood cell transfusion soon (normal is 11.7-17.7) so I'm getting close to normal. My Platelets were 33,000, which is still low but very close to my personal best in five years! More excitingly, my ANC was 4600 (normal is 1600-8300). Yesterday I was 3800 so I'm improving vastly and I'm in the normal range! My white blood cell count was 5.5 (normal is 4.0-11.0) so I'm normal there also! I know this is a bunch of jibberish for some but it basically means the donor cells normally producing three out of the four important things in your body. Unfortunately, my counts came back saying that my iron and kidney functions are not right. They ran some tests today and we'll know them in a few days. My spinal tap also revealed that it does look like I have meningitis. I'm on antibiotics until we get the results back. My fever has gone down so the antibiotics seem to be working and nobody seems to think it's going to be a huge deal to treat it. I'm obviously a little nervous to get this while I don't have much of an immune system. These next few days will be very hard for me because I'm anxious to see what's going to happen. I pray that my good luck continues. This also explains my headaches. I'm going to be in the hospital longer than we expected but I'm hoping to be out sometime this weekend/early next. I can't believe It's already July 1st. I've been here for more than two months.

*(Day +52),Friday, (July 2nd) was one of those days that I just wish never happened because it was just miserable and mundane. Good news: My morning counts were all still good or better and we found out that my cellularity is 60%. Which is perfectly normal. It's actually the same cellularity as my doctor! Bad news: My kidney levels are a little high so the kidney team is going to look at my tests and try to figure out how to lower it. My headache continued to get worse and my fluids were increased so I gained more water weight, which caused me to get even more bloated and it triggered my leg pains. I couldn't even stand without using my arms because of the pressure on the tops of my feet and the tightness in my back lower legs. I spent the day just resting and feeling miserable.

*(Day +53),Saturday, (July 3rd) was another bad day. I woke up to go for a CT scan to look at my head. They found fluid, which is normal but they did find more than last time. They also took a chest x-ray that saw some 'fluffiness' in my upper left lobe, indicating that I also have pneumonia. The doctors added another antibiotics to start fighting that too. My blood sugar was also really crazy all day. We don't really know why. The endocrine team gave us a scale to follow but the scale is messed up because I keep going from being hyperglycemic to hypoglycemic in a matter of minutes or hours. I mostly slept all day because my body was all messed up from my blood sugars and I felt awful.

*(Day +54),Sunday, (July 4th) was a bad day. I woke up from a really bad night of sleep because my headache was driving me crazy. During the night the docs sent in these 'compression stockings' for me to try because of the swelling in my feet and legs. They are essentially these really really really tight knee-high socks that hurt like a (you know what) to put on because it's like you're squeezing your skin even tighter. if you can imagine such a pain. I was groggy and somewhat drugged up at the time so my mom had to put them on for me and I whined the whole time. At one point I even said 'mom, I am NOT your friend right now'. She thought it was funny. I was serious. The day was a little better, my counts are all normal and/or rising. Still excited about my great cellularity! I haven't had any stomach problems lately and my head is feeling more manageable. Hopefully once the antibiotics fight off the Meningitis and the Pneumonia then my headaches will go away for good.

Sorry for the slacking on blogging! I've been very drowsy with the headache and I've been having eye problems like light sensitivity and blood in my eyes so I haven't been online as much. Please keep reading and comment so I know blogging is worth it!

**Reason on the Week: When deciding on whether or not to do a spinal tap (a major medical decision), I was able to make my own decision. Turns out I made the right one. Being 18 and having the opportunity to have control over my own medical decisions feels good and empowering. Being an adult is always a reason to smile (RTS).

Post Transplant (Week 7)

*(Day +41), Monday, (June 21st) and (Day +42), Tuesday, (June 22nd) are both a blur. Couldn't really tell you what happened because I was knocked out on pain meds. I pretty much only woke up to go to the bathroom, eat and take pills. I don't even remember what I ate or who my nurses were. I know I got antibiotics during both days and I know on the Tuesday that my white blood cell count was 3.4 and my ANC was 2300. Both are improvements and both are getting closer to the normal range.

*(Day +43),Wednesday, (June 23rd) was a much better day. My head and stomach were starting to feel better so I wasn't needing any pain meds so I was actually awake and coherent for most of the day, My day was more like my normal routine. I got up around 8:30 and heard that my white blood cell count was 4.3 (Normal is 4.0-11.0). My ANC was 3400. (Normal is 1600-8300). I haven't been in the normal range for over five years. My platelets and red blood cells are still being pokey so I'm still getting transfusions but they should start getting better soon. I took a nap in the morning, ate lunch, took another nap and walked several laps around the hall throughout the day. I took a shower and planned to go to bed early but ended up chatting with my night nurse, Em, until almost 2 a.m.. I promise to try to blog more often and not get so behind! Have a good day :)

*(Day +44),Thursday, (June 24th) was a good day. My migraine and stomach problems are better so I wasn't on any pain meds for most of the day. We learned that my white blood cell count continued to rise to 6.0! And my ANC jumped to 5,000! Both still in normal range, which is awesome! My fever has been gone for a few days so I get to leave the hospital tomorrow! I spent the rest of the day resting and watching TV and catching up on blogging/emails. It's hard when you get a week behind and then have millions of things to answer. But I finally got it all done. I also took some laps around the unit to work on my strength. My muscles are twitching less and I'm not getting out of breath as easily. I also walked all the way down and out to the front of the hospital and back. We only sat down once outside to enjoy the weather. I also discovered the massage chair on the unit and sat in that for awhile. My back has been hurting from sleeping so much and this chair was like heaven on my back and on my shaky legs. Then I took a nice shower and went to bed. Check back tomorrow when I get to leave!

*(Day +45),Friday, (June 25th) was a great day. I finished my antibiotics and I'm still fever free so they let me leave the hospital! We didn't get out until early afternoon and by the time we got back to the Ronald McDonald House I just wanted to sleep in a quiet setting. So I plopped down on the couch and slept until dinner. We ate at the house for dinner- chicken nuggets and macaroni. The people serving were really nice and funny. After dinner I rested because my stomach is so sensitive from all the meds and such. My mom went shopping so I had a few hours of alone time to just rest and be alone. It was awesome. I just took my pills and caught up on emails and now I'm about to go take a bath...yes, a bath (you don't get those in the hospital. you get crappy showers with cold water) and then I'm going to lay my fuzzy bald head down to sleep in a real bed where I will not be interrupted my machines and nurses and alarms and mysterious noises. I suspect this to be a very nice night.

*(Day +46), Saturday, (June 26th) was not a very good day. I was supposed to get a platelet transfusion in the morning so we woke up early to go to the bone marrow clinic and then when we got there we found out that the blood bank had screwed up and I wouldn't be able to get my platelets until the next day. I was feeling pretty crappy so I spent the rest of the day sleeping. I did manage to get up and go for a drive with my mom. We just drove around town and looked at potential cool places to go when I'm better. It was nice but I didn't realize how weird it would feel to ride in a car after so long. My mom was driving like 30 mph and I felt like I was on a roller coaster. I hadn't been in a car for like a month and a half. Driving is not like riding a bike. I found myself clutching my seatbelt and the handle on the door because I swore we were going to hit something or someone. It was also kind of frustrating because there were all these things I wanted to do and places I wanted to eat and places I wanted to shop. But I couldn't even manage to walk long enough to do that. eat dinner and shower. Having to check my blood sugar before I eat, count up the carbs and be given insulin is such a pain. I'll be so happy when my temporary diabetes is gone.

*(Day +47), Sunday, (June 27th) was another bad day. I woke up feeling really crummy and even turned down an offer to go see Sex and the City 2. Now you KNOW how crummy I must have felt. We went to the BMT clinic for blood draw and platelet transfusion and my temperature kept raising. They decided to let me go home because I was doing ok. I spent the rest of the day in bed feeling miserable. My mom made me eat dinner and it ended up making me feel even worse. Around 7 p.m. I got that same headache I had the last time I was re-admitted and I started to get sick to my stomach. My temp started raising to the 102's so they made us come in. Sunday night is a blur because I was on so many pain meds for my headache and stomach. During the night my fever spiked to 104.9 so now the doctors are working really hard to figure out what I have. I'm on general antibiotics for the time being.

**Reason of the Week: On Wednesday, some of my blood counts finally hit the normal range. For some counts, this is the first time in five years I've been normal. Being normal (medically) is always a reason to smile (RTS).

Post Transplant (Week 6)

*(Day +34), Monday, (June 14th), was another good day. It's been raining all week so my mood has been a little drowsier and sleepier. I just haven't been as active or online. Hence the reason for the late blogging. Good news, My white blood cell count hit .9. My cells are continuing to engraft. My ANC also hit 600 today, which is a nice jump from yesterday. I'm getting closer to being able to leave. The doctors said it sounds like I could be getting out of the hospital by the end of this week or early next week. They've already started switching most of my IV meds over to oral. I'm taking soooo many meds but it's better than being hooked up to a pole all of the time. I'm down to just a few IV meds. They've also taught me how to give myself insulin because I'll have to keep taking it until they stop the steroids. I can't wait until my blood sugar is normal again. It's annoying to poke my finger every time before I eat and then give myself a shot of insulin every time after I eat. It's also annoying to count carbs. My mom has an appointment on wednesday to learn how to take care of my hickman line (like how to clean it and such). I think tomorrow the nurses are going to have me start doing it myself. I've seen them do it for so long and I've been taking care of my port for so long that I don't think I'm going to have any problems. So yeah, Monday was pretty much spent preparing to leave. My weight went down more and I'm eating less/eating healthier. I'm feeling better about myself. I took a shower fairly early and then started craving vanilla ice cream. I know I've already talked about my strange cravings for sweet over salty but now I'm also craving vanilla over chocolate. That never happens. I'm not a vanilla person. So I had some vanilla ice cream and it hit the spot wonderfully. I joked that I'm going to have vanilla ice cream for breakfast in the morning. I don't think my nurse will let me. We'll see. :)

*(Day +35), Tuesday, (June 15th), has been a great and somewhat more productive day. I woke up this morning to hear the wonderful news that my white blood cell count has continued to jump and is now at 1.1! Engraftment of new cells is continuing. I'm still not in the normal range but I'm over 1 now and improving every day! My ANC also hit 700, another nice jump. As long as I stay at or above 500 tomorrow, my doctors promised I can not only leave my room BUT I can be unhooked from my pole and I can go over to the Ronald McDonald House for an hour tomorrow. Then if I do well they said I can move to the Ronald McDonald House on Thursday or Friday. Meaning I could go in public (while being mindful of germs and following a nice list of rules) this weekend. Just in time for my dad and brother's visit this weekend. I spent my day thinking about outfits again, taking out my makeup and thinking about how I can make myself look as much like my old self as possible, thinking about accessories, etc. I can't wait to not be attached to a pole and to be able to sleep without being interrupted and to just have some peace and quiet. And good TV! And good food! And some amount of freedom. The list goes on and on. My biopsy site is still sore and it's been bleeding off and on, which it usually doesn't. It's getting better every day and I've stopped the pain pump all together so now I just get pain meds when I ask for them. It's nice because my mind is starting to clear up but I'm also in more pain. I'll take a little pain if it means I get out of here faster (but safely). I got my usual morning platelet transfusion but I didn't need red blood cells today. I ate two meals today and I was really good about keeping my carb count low so that I didn't need as much insulin. Plus I'm probably going to pig out on sweets when I'm at the Ronald McDonald House. :) . Tomorrow they are switching my last meds over from IV to oral so that I'm ready to leave. That will be the true test as to whether I can handle all of the oral meds or not. I'm hoping my stomach will cooperate because I've never been a very good pill taker. I haven't really had any problems so far so I'm hoping my mind and body are on my side. My mom has been giving me my insulin shots and I'm about to start doing my own finger pokes to check my blood sugar. I'm also doing my dressing change for my hickman tonight so that I can show them I know how to clean it properly. After that, I'm set to get out of here! I'm so excited and full of anticipation that my nurse is already talking about having me take ambien tonight to help me sleep. Otherwise, I'll be up all night with excitement and then I'll be too tired to enjoy tomorrow. lol. Ok, well I'm going to go take a shower and head to bed. Oh PS- I didn't have vanilla ice cream for breakfast like I had intended BUT I did realize this wonderful thing where you take two chocolate chip cookies and make an ice cream sandwich. Definitely doing that right after I shower. I'm a genius. Check back tomorrow for some (hopefully) good news! I'll try not to keep you waiting too long.

*(Day +36), Wednesday, (June 16th), was a good day. Sorry I made you wait so long (contrary to my promise in the past post). It's about a week later as I write this so I'll try to give you the basics. My white blood cell count was 1.4, another good jump. ANC stayed at 700 so I was cleared to leave my hospital room. I convinced them to not only let me leave the hospital room, but leave the hospital for a little bit to go over to the Ronald McDonald House. We planned to walk over because it's only a couple of blocks away but by the time I got to the front of the hospital, I was about to pass out. I forgot how weak my body is right now. So my mom went and got the car and drove over to get me. I got to see our new room, which is really nice and a lot bigger and it'll give my mom and I some privacy. Then we ate dinner at the house with the other families. When we got back to my hospital room, I sat down and was asleep within 10 minutes. It wore me out but it felt great to feel fresh air and ride in a car and see sunlight. I did have my first experience of having people see me as a chemo patient. You never realize how much people stare until you're the one being stared at. I guess I don't mind, I probably would shoot a glance at a pudgy, chipmunk-faced, bald, masked girl. It's still uncomfortable.

*(Day +37), Thursday, (June 17th), was a busy day. We packed up our stuff and my mom moved it all over to the RMH while I tried to catch up on some sleep. Once I got to the house, I went straight to the room and into the bedroom, closed the door, turned off the lights and just slept. It was glorious.

*(Day +38), Friday, (June 18th) was a rough day. It was my first full day out of the hospital. My dad and brother also came in town so my dad brought me breakfast and came to pick me up. I had to get up early to go over to clinic for an appointment. I'll have to do that every day for awhile. It sucks to get up early but then the rest of my day is free. We also got the results from my bone marrow biopsy that I got done last friday. As you know, I got two units of cord blood from two different donors. The results said that my bone marrow is 96% donor cells and only 4% my cells. They're going to check again in a few weeks but it looks like the donor cells are going to win (which is the entire point of a transplant). They said it could take a long time to reach 100% but 96% is enough for it to be working, not failing. It's not perfect but its great. After that I mostly spent the rest of the day sleeping. I've never been so tired in my life. Walking up three flights of stairs makes me feel like I'm going to pass out. It's even harder because the medicines/steroids i'm on are giving me the shakes so try walking with shaky legs when you're out of breath and light headed. Not a fun experience. Taking a shower is like running a marathon. It's frustrating because I want to be able to start doing things but my body is just so worn out. I just have to wait it out.

*(Day +39), Saturday, (June 19th) was a pretty boring day. My dad picked me up for another early appointment. We got out of there around 1 p.m. and went back to the RMH. I slept for most of the rest of the day while my mom and my brother went out to do stuff and my dad stayed behind with me. For dinner my dad went and got me my favorite pasta. For the first time ever I couldn't even finish it. My stomach is starting to hurt from all of the meds I have to take. I have to be more careful when I eat and I never know when I'm going to be hungry or when I'll be able to eat and I literally have to lay around for half an hour after eating otherwise it freaks out.

*(Day +40), Sunday, (June 20th) was a bad day. Sunday night I couldn't sleep because I had an awful migraine and my stomach was really hurting. My mom took my temperature and it was over 100.5 (which is when they make you come back to the hospital). We waited awhile but then it started to get worse and I threw up so we called the hospital and went straight there. I was in so much pain. I've never had a migraine that bad. After they finally gave me some pain meds, I was knocked out for the rest of the day. Plus side is that all of my counts were good.

*Reason of the Week: On Thursday, I stepped outside for the first time in 49 days. Fresh air and sunshine are always reasons to smile (RTS).

Post Transplant (Week 5)

*(Day +27), Monday, (June 7th), has been a great and mundane day. I fell asleep around 2 last night but slept surprisingly well during the night. They didn't give me any medicine to pee during the night and had my fluids running at a lower rate so I only had to get up like twice to go to the bathroom. That's a huge improvement from when I was having to get up twice an hour. I slept until around 8 a.m. when my mom woke me up to tell me that my white blood cell count has stayed at .4! It didn't go down and we're so close to .5 now! Which means I'm getting closer to getting to leave my room and walk the halls. And closer to getting to go to the Ronald McDonald House. This morning I also realized something, The day I found out we were going to proceed with transplant was March 11, 2010. I know because that's when I blogged about it. My transplant date was May 11, 2010. Maybe that means I'll be able to get out of here on June 11th? Which is in 4 days. That would be nice. What a coincidence. 11 seems to be my lucky number. Today my feet are a lot less puffy because I'm going to the bathroom so much and my knees are less puffy too. My mouth sores are also a lot better. My only complaints are that my feet still feel tight on the tops and my knees feel tight and keep cracking when I bend them. I also have sores in my throat that make my feel like my throat is swollen. It just feels like I have a really bad cold or something. They are decreasing my continuous morphine every day by my request. In a few days I won't be on any continuous, that way hopefully I'll be less groggy and forgetful. I still have the morphine pain pump that I can push if the pain gets to be too bad. I did a lot of stretches today for a total of 20 minutes. Rotating my ankles helps the swelling and bending my legs into the air and holding them helps my leg muscles and my knees. I also do arm rotations to stretch my elbows and shoulders. Physical therapy would be proud. I ate all three meals again today and my carb count is getting lower, which makes me feel healthier. We did have one scare today. We have to check my glucose before every meal that I eat and then recheck after I eat and give me insulin for the carbs that I eat. It's a complicated process and annoying because I have to count my carbs. When we checked my glucose before lunch my blood sugar was extremely lower than normal so my nurse freaked out and had me drink sugary apple juice and then I had to (lol) eat pop tarts after lunch so that my blood sugar would go back to normal. I guess the insulin got messed up earlier in the day and I was given too much or something. It gave me an excuse to eat my yummy pop tarts so I was ok with it. :) . COW rounds were uneventful and Dr. Smith's visit to my room was as well. Nothing really new. They're all still very impressed and say I'm doing well. I got my usual platelet transfusion this morning but I don't need red blood cells today. That's about it. I took several naps today and I'm already really tired and it's only 8:30 p.m. so I'm probably just going to go take a shower, eat my nightly pop tarts and go to bed. Hopefully I'll have another restful night. I had all good nurses today and tonight! This morning I had Kristin, who we put on my team. Then I had Sarah for the first time who isn't on my team but she's really nice. And now I have Em, one of my favorites. I want her to paint my nails again but I'm really tired so we'll see. Goodnight. Check in tomorrow for more of week 5!

*(Day +28), Tuesday, (June 8th), was not a very good day. It rained all day and I was surprisingly tired so I slept all day. I don't think I watched any TV or even checked my facebook. Or updated my blog. I think I just needed to catch up on some sleep. White blood cell count was still .4. No changes there. COW rounds and Dr. Smith's visit to my room were both pretty uneventful as usual. Still waiting for .5. The only times I woke up were to take meds and do mouth cares. I ate a few times. My carb count was the lowest it's ever been because I was too tired to eat three meals. I still ate enough to avoid the liquid calories. I managed to shower and change clothes before passing out early. I didn't even bother to put on a scarf because I was so tired. I slept bald. That's how you know I was exhausted. I just felt under the weather.

*(Day +29), Wednesday, (June 9th), was another not very good day. Basically exactly the same as Tuesday. White blood cell count was still .4. Same with COW rounds and Dr. Smith's visit. I ate even less on Wednesday than on Tuesday but I still ate enough to avoid the liquid calories. I also showered and changed my clothes and then went to bed early again. Slept bald again. Didn't even care who saw. I feel like I just had a moment of deja vu. The only difference was that on Wednesday I got a platelet transfusion and a red blood cell transfusion. On Tuesday I only got a platelet transfusion.

*(Day +30), Thursday, (June 10th), has been a much better day. My white blood cell count finally jumped from .4 to .6! Once they hit .5 that means that the cells have officially engrafted. Which is a very good sign. Now I just need to keep my counts at at least .5 for a few days and then I can get out of this room and into the hall. Then it won't be long before I can leave and go to the Ronald McDonald House. We're getting closer. I slept in until 10 and then ate breakfast, which made my mom and the doctors very happy because I hadn't eaten breakfast the past two days. My platelets were 5,000 this morning so I had to get another platelet transfusion around 1 so I did nap during because of the Benedryl. My hemoglobin was 11.5, which is pretty much normal. So no red blood cell transfusion today. I should be able to avoid naps until bedtime. I'm feeling much better but still more tired than usual. I think I just needed to catch up on some sleep. Today they finally stopped my continuous morphine at my request and now all I have is the button that I can push every ten minutes and it'll give me a dose of morphine. I've been less groggy today because of that. I'm starting to feel less forgetful, which is great. I did have to push the morphine button a few times earlier because I had a really bad headache. I also did wake up with two new mouth sores, one in the same spot as the bloody one that turned yellow and fell out. It already happened again. I got to play with another yellow piece of cheek. So gross but awesome. I still have the chunk missing from the side of my tongue but there's no blood or yellow stuff in it. I also still have a few in the back of my throat and down my throat that feel like a cold. No bloody noses and my weight is going down. The only other new news is that tomorrow I'm getting a bone marrow biopsy to check on my marrow and see how things are going. I've had tons of bone marrow biopsies (in the double digits) so it's not really a big deal. They just put me to sleep and stick a big needle into the back of hip and then they go into my bone and take out some marrow and then take out a little chunk of my hip bone. The bone grows back but after the biopsy I'm always pretty sore for a few days because of all the tissue they have to go through and because of the chunk of bone they take out. They usually just put a bunch of padding on it and I have to take morphine for a few days. The only concern is that my platelets are so low that the procedure could cause me to bleed and not stop so they'll be giving me a platelet transfusion during the procedure so that the platelets can go right to the site and clot it right away. That's about it. Sorry for not updating in a few days but you guys have to remember that not all of my days are going to be good and I'm not going to feel like blogging every day sometimes. That doesn't mean something is wrong. Check back tomorrow for more.

*(Day +31), Friday, (June 11th), is going to be a long day. It's about 10 a.m. right now and like I said yesterday, I'm getting a bone marrow biopsy in a few hours. I'm going to be on a lot of morphine afterwards so I don't know if I will be up to blogging today. I will definitely blog as soon as I can. So far everything is going well, though. So no worries. UPDATE: Friday was a long but good day. I spent the morning resting. Around 11 a.m. I got my first platelet transfusion and then went down to get my bone marrow biopsy done around noon. They gave me another platelet transfusion during the procedure. I passed out really fast and everything went smoothly. The doc did have to poke me twice so I'm feeling more sore than usual. I have a ton of gauze and pressure tape on the site right now so we don't know if I bled but we know that it clotted because it isn't actively bleeding. I spent the rest of the day resting and getting morphine. I ate lunch and dinner and was ready for bed by 10 p.m. but we ended up being awake until after 1 a.m. because we had to wait on some meds that the pharmacy messed up. I didn't sleep very well during the night because there was a lot of noise and I couldn't get comfortable.

*(Day +32), Saturday, (June 12th), was an alright day. I'm still having a good deal of pain from the biopsy so I spent most of the morning being pretty drowsy because of the morphine. COW rounds were pretty uneventful. We did learn that my white blood cell count went back up to .6. Now it just needs to stay there. My ANC was still 300 and it needs to get up to 500 and stay there. So things are getting better but we're not quite there yet. Dr. Smith's in-room visit was pretty exciting because she told us that they had seen some of the results from my biopsy and that there are baby white blood cells, red blood cells and platelets growing. We don't know if they are donor or host but something is growing and they seem to be optimistic that this means my transplant is working. I watched a few episodes of the OC and got a platelet transfusion this morning. I did eat three meals today and my carb count is on the lower end of normal for the day. My weight is still going down and the puffiness is much better. You can actually see my ankles now and my fee aren't swollen at all. My knees are still a little swollen and my muscles are still twitchy. For some reason my chipmunk cheeks won't go away. My fat face is probably what I'm most self conscious about. The nurses can't really tell me when it'll go away. My face looks even fatter because I can't wear my contacts due to germs so I'm stuck wearing my glasses- which are now super tight. It's quite a scene. I'm still shaky but I'm getting better. I've been really drowsy today because of all the morphine but I'm trying really hard to stay focused and remember things. I'm starting to be able to wear some of my regular clothes again- especially my shorts/pants, which makes me feel better. At first I felt bad that my mom had to go out and buy me a bunch of new clothes that were bigger but now I'm starting to figure out ways to wear them afterwards when I lose all the water weight. There's also a free gym at the Ronald McDonald House and I've decided that I'm going to start working out when I get out because I'll have all of this new energy I didn't have before. Plus I think getting in shape will help my self image, which I will desperately need given the fact I'm bald and I don't look like myself. I took another nap this afternoon because of my back. My mom left to go shopping and to go to the house for a bit. It was nice to be alone for awhile because people kept coming in and out of my room all morning. I think we had five different people come in during a period of ten minutes while I was trying to sleep. My door is also really noisy so every time somebody comes in and out I wake up. I was not a happy camper. I'm starting to get drowsy again so I'm going to go take a shower and go to bed. Goodnight.

*(Day +33), Sunday, (June 13th), was an average day. My white blood cell count jumped to .8 so my cells are continuing to engraft nicely. My ANC was still 400 and needs to get to at least 500 and stay above or at 500 for three days in a row before they'll let me out of the hospital room. Sounds like that could be happening in the next week. I'm still sore from the biopsy but I've been trying to use my pain pump less. I've also started to prepare for leaving the hospital. I've been thinking about clothes I can wear that will hide my gnarly bruises and I've been testing outfits with hats and scarves to match them and I've even been thinking about jewelry and accessories. It gives me something to do and focus on. Chipmunk cheeks/double chin are still present but swollen legs are gone. Highlight of the day: It was Sunday so that meant I got my weekly favorite pasta. It was especially yummy. I took a shower and went bed.

**Reason of the Week: Now that I've been feeling better, I've finally gotten around to going through my graduation/transplant presents. Two presents in particular are really special to me. I've been a fan of this jewelry designer named Laurel Denise for awhile. She makes really unique and homemade jewelry with great messages and quotes. I saw a necklace that had "smile" etched into it on her website and immediately knew I wanted one because it fit the theme of my blog and my overall outlook on this journey. My mom contacted Laurel Denise and not only did she get the necklace, but after she heard about my blog, Laurel custom made me a bracelet that has "Reason to Smile" etched into it. They both are beautiful and I can't wait to start wearing them. Beautiful jewelry and generous people are always reasons to smile (RTS).