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).