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).