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).