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).