Daily Devotional- 3/30- Happy Birthday and Breaking World Records!

Great Blessings today from the Lord and continued gratitude for prayers, encouragement, food, sitters, and financial supported. Today it has been one year since my BMT. (See link for last years blog) http://heatherwarrencape.blogspot.com/2011_03_01_archive.html  and although it has been and still is a rough recovery, I'm was truly blessed to have found a 9.5 match. The BMT was still the best option and still helping me even though it did not end up being a cure for me.

Receiving stem cell is just like getting blood, but more people in the room.

Other great news is that the bone marrow drive in Athens was a great success, we beat the work record for the number of signed ups in a 24 hour period. Here is the link to the Athens News Paper. So many lives will be saved. Some people stayed up for the whole 24 hours, I volunteered for 4 and still recovering, but it was great. There is still a lot of fun raising to do so please go to Kajal's Be the Match Page if you are able to donate some money to this huge drive. It's not cheap to DNA type.   If you still want to sign up and did not get a chance to do so, go to www.bethematch.org   Please continue to pray for Kajal , and others,as she is looking for a match. 

Friends that came out play, most helpful and sounded great!

I did some singing and playing too but I'm really good at "barking" at people.

My little area I set up for donations. Amazing what a bald head and some pictures will do!


I just so grateful for everyone that showed up and can't wait to see what else God is going to do in my life and others. So today's devotional is simple.... be thankful, be giving, bring life to others. 

The Masked visitors- Guess who?

I missed getting pics of some of you!!!

Day +11 and +12 Docs say I'm doing great!

                         Hello everyone! My counts continue to come up! Today my WBC's are 1.9 and all I had to get was some IV magnesium this morning. I felt great yesterday and was able to have two sets of visitors. My aunt Lisa made me a beautiful little artificial flower basket, I just love it! She is also wanting to buy my little girl some clothes! My uncle John and talked about music some it it was a great visit. My mother and father in law came to see me too and brought some food and other stuff I needed. It was great to be able to have some energy to work on some crafts and I even got some work completed. My throat and the cough are still giving me some issues and I coughed all night long, so of course I felt pretty bad at first. Thank goodness I still have access to some pain medications because I needed it this morning. I could have taken something for a cough last night, but it can just delay the healing process. Hopefully, I can get a good nap this afternoon. Oh my, they are still looking at Wed for me to leave here.... it's great news.... this last part, since feeling a little better, is starting to fly by. Little nervous about leaving, it's like you become two different people and I know I'm going to have to be taken care of some and watch Evalyn being taken care of may be difficult for me.
                    I do not feel that I have been able to be "a blessing " to as many people here like I was my last extended stay. Mostly because I have not been able to talk, sing, visit with anyone, and felt like crap. Of course, God has been working on me and that is probably more important right now. I'm suppose to get out on Wed if everything is still looking good tomorrow. I will get to see my baby girl and hubby, no puppies yet though. It's still amazes me how all this works and how God has given man the tools needed to figure out all the neat medical procedures that saves lives. Next up... some masked visitors.... I think I missed three of ya!

Day +10 God heard our cries and Found me a Window

                      Praise the Lord, things are starting to look up. Luckily, I didn't have to go completely to the other side of hell before God snatched me from the fire.  My white count is now measurable meaning it is .4 today. Today was the first day in a while that I have not had to have platelets or blood. The means that the stem cells have set up housekeeping and are getting to work to make new bone marrow.  Just a little jump in my white count is helping the sores in my mouth and the doctor said that I have been doing a really good job with the oral care. I have about 5 different things I'm using and a lot of time on my hands. I was able to go out of the room for the first time today and my brother walked a half mile with me the my mom walked the other half. Later this evening, I was able to walk another half mile and then rode the bike for 10 min. I even wanted to shop today, online, so I did and it was fun. There is an art project that I have been thinking about but ended up leaving at home because I knew I was going to feel so bad. Well today, I actually found myself wanting to do something so my mom brought the stuff and I'll be able to work on it tomorrow. Doesn't sound like much but I haven't really been able to do anything or have the concentration to do much. I also got some great news today that I may be one of those lucky people that get to go home early.... maybe even Wed or Thurs..... well not home just yet. I'm going to my aunts house to stay a night or two because I have appointments at Emory all day that Friday if I am out.
                         Things that we still have to overcome is this horrible cough that I have going on. They think it is mostly just in my throat at it is really hard to get up and out do to the pain. They gave me some kind of patch to put on that is for nausea, but for me it is helping me to decrease the amount of saliva I was producing and not drool like a dog or keep the suction thing in my mouth, yuck. I also have high blood pressure and swollen feet and ankles. But I do feel a lot better today and hope tomorrow is wonderful.

                         On the home front, Evalyn and Jonathan are doing great. Jonathan has a lot of school work to do and at the same time, he is trying to get the house clean for me to come home. The big one is getting the carpet cleaned while the dogs and Evalyn are out of the house, Jonathan attends classes and takes exams, all while my mom is tied up with me. We thought that we had another week, but I'm not complaining. Evalyn is pulling herself up on things now by herself!!! She also picked up some cheerios for the first time and got a few in her mouth. Mom got a cute video, I just have to figure out how to get it on here.  Evalyn had to go to the, wow almost said vet, to the doc this week for a rash, and they weighed her: 19lbs 13 oz!!!!!!!!!!!!!!!  We are going to pass are hand-me-down person..... this I am sad about because of the obvious money savings. I got some pretty good deals on ebay today so that was good :) Evalyn is now able to sit up and even stand up in her crib which is posing a sleeping issue. Not sure how we will work this one out, but I guess it does just like everything else. Bye Bye, cute UGA mobile.
                          Thanks for all your prayers and you support.... soon starts the next phase of warding off GVHD and infections so I don't have to come back for a "tune up." God is with me now and will be with me then. God bless you all!!

DAY +7, +8,+9 I found the Secret Door to Hell

                     The past few days have been the worse and the physicians feel that I have hit the bottom and my counts should start to come up slowly soon. I don't think that there is much more to tell you medical wise that was not in the last blog. Everything has just been worse: new sores in my throat and mouth, new swelling in my feet and ankles, headaches, more medications, blotchy skin, unable to eat anything, and have barley been able to speak. So when I said secret door to hell,  I mean pain wise. I told my Doc there needs to be an extra dip in the scale, He agreed, but thought it may deter others from the process. Probably right.
                      Two mornings in a row, I have been able to ride that bike at least 3 miles had enough energy to visit with a few masked friends and family masksdddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddddd            (This is one of my thing that can happen when I start to zone out and leave my finger on the key),  My other favorite is when I startle myself in a weird Elaine Dancing type of movement . I will also catch myself saying something to someone who is not in the room, or worse, not remember what I just thought I said, did I say it or not?  Then I may just fall asleep any ol way.
              Some good things that happened:  they have taken me off isolation but now i'm too tired to go walk today but will probably go tomorrow. They put me on some meds for inflammation in my lungs and throat and I have been able been able to eat a little and even better drink some water.
             ***Visitors*** We are very lucky to have so many people want to come cheer me up in the hospital. Please make sure that you call first because there may already be to many people visiting that day. If you can't get in touch with me, call Jonathan. I may be sleeping, sick, or have lost my voice completely. Before you come, you have to think "Have I been around anyone sick at work, church, dogs, cats, smoke etc, Have I been sneezing, coughing, have or ancvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvvv others                                                                                                            

Well, I have fallen asleep.
                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                           

Day +4 and +5 In the Basement

Hello Everyone. As you can imagine, I'm going through a lot of pain right now and there is not too much else that they can do for it. This is just something I will have to pass through. Now, I have to use a suction tube, think dentist. I have to use it when I have too much saliva and it is too painful to swallow . Gross, huh? I wonder if when Jesus went to hell to get the keys, what all happened during that during those 3 days. Share what you think about that.... I found some materials on it but can't read it.  It is very hard for me to concentrate on anything more than a comment. I'm sitting in bed right now with my laptop and find myself nodding off. I could probably fall asleep most anywhere, except at night in my bed, at the hospital. It is not only the medications but that I have not slept well in many days, I'm weak due to not eating, and that I am in pain.. My parents, Jennifer, and Jonathan came to visit this weekend. When you're stuck in a room, time gets all messed up. Yesterday went by a little faster than today. I really can't believe that it is only 1:30 pm!

Painful sores in my mouth :(

Off to try and sleep some more.
Heather

Day +1 and +2

Hello Everyone!  Yesterday and today I've just been trying to wrap my mind around being stuck in this room and figure out how not to lose it. Not sure if I have figured it out, but I think I'm still sane. My test results still came back positive so I'm still stuck in this room. I will get retested on Monday. The team feels that everything is on course and my counts are going way down. I have been feeling ok except for the general weakness, a little stomach sickness, and my mouth and throat feeling weird. Oh you'll like this.... I pooped my pants today. Yep, it was so gross, and I almost started crying. I'm still not sure what happen but it happened fast. So no matter what happened to you today at least you can say you were in control of your bodily functions if nothing else. I know some other people who are reading this that have pooped their pants.... feel free to share your stories here. Yesterday my cuz Andy came to visit and also Mike and Teddy on Jonathan's side of the family. I'm in the process of getting enough pictures together to post a masked visitors blog but Andy got away yesterday. We had some good visits and today my Mom came and stayed for a while ;). I was able to talk the team into letting me use the exercise bike in my room so I could get some type of activity. They agreed and I rode about 3 miles this morning. I was also able to get a little paper work done today. I don't have too much to say today but I know that a lot of people care and want to be updated. I'm very thankful for that. I figured pooping my pants was enough information for one day :).

Day Ground Zero, on To The Basement

The bag of stem cells.

Who knew you could smile through a transplant?

             Hello! Praise the Lord, the stem cells got here safely and I didn't have any reactions to receiving them. It wasn't really a big whoop, just like getting blood. My vitals had to be monitored over an hour and I had a nurse in the room watching me. My mom came up this morning and stayed with me and then Jonathan came for a while. I also The stem cells where not even frozen, so I got them fresh from overseas! God Bless my donor, I hope to meet her one day! We also had a good visit with his brother and our sister in law. I've decided that everyone gets a picture with a mask on since I'm stuck in here. Well, it makes since to me. I will have some pics up tomorrow of the masks visitors.

                   Remember when 911 happened and they called it ground zero but there was still a big whole in the ground from the rest of the building? Well that is still where I have to go and still have a long way to recovery, but this is one of the biggest steps! The picture is hard to read, but if you start at the left, I'm at the third line, which it BMT at day 0. Now my counts are dropping and will go into the "basement period". They say usually around day +10, the stem cells start to grow new bone marrow which makes new blood cells. Since it was an unrelated donor it may take a little longer. It looks like I'll be getting out of here within 2-3 weeks. Funny how fast time can go and how slow it can go at the same time. I wonder how many of you are thinking about all the things you didn't get done today because you didn't have enough time. I know, I have been there, no judgement, just a thought. I have my own issues to deal with. A fellow transplant patient had to go back in the hospital with pneumonia. Get well soon Janet!
               I don't know how this works, but somehow the chemo and radiation I received are still killing my immune system off, but it doesn't kill the stem cells. I will be on IV anti rejection medications each day, anti-everything pills, fluids, and will get platelets and blood as needed. I will also get some more chemo but I don't think it is as strong. Not sure at this point when they are doing that.  My peach fuss and the eyelashes that started to grow back will fall out again. No big deal. Mostly, I'm really don't want to get mouth sores, because they can be so painful and make it even harder to eat. I want to keep my weight up and not get too weak before going home. I have lost 7.5 lbs since being here, a lot in fluids I'm sure. I'm eating a little better now but I can't eat much at one time. I feel that my brain is a little clearer since the strong chemo is getting out of my system. As you know, since I tested positive for the cold virus, I have not been able to go the kitchen or out in the hall. I have been able to go off floor to walk, which is good for me. Well, since I have not been retested yet but my counts are so low, I can't even leave the floor now. So I'm saying "I can not leave the room!!!!" Holy crap, that really freaked me out. After the team left, I cried some because it is just all so horrible sometimes. You've been in a hospital room, I'm sure, it's small. I also got my hopes up a little about maybe being able to visit with Evalyn this weekend but they said I probably won't see her until I go home.  Now, I can get retested but the doc said that I will probably still test positive because even when you don't have a virus anymore, your body still sheds it. So I'm stuck, now what do I do? Poor poor hamsters in there little cages. At least they have a wheel.
              I know that when Paul was in prison, he had to come close to going crazy. It's not like he had the internet or a working toilet. I know that I will get through this, I just hope I'm still sane. Hopefully, now that my brain is clearer, I can do some more reading, playing my guitar, and of course paper work. I have the most wonderful employer who wants to see me through this... they are amazing. I mentioned a book the first week I was in here, A Bend in the Road, today I read something that inspired me. He said, " What a terrible danger it is for us to become trapped in the claustrophobia of the presences of our crisis." He goes on the talk about how God uses everything to mold and make us. We can't see the future, but we can see the past and what God has done. He said to make a list and to make sure to remind yourself of these things. That doesn't mean that there isn't going to be a lot of tears, anxiety, fear, etc, but it's what we do with it. It's taking it to the Lord and trusting him to see me through. And to see you though it.

My sweet husband and me watching, or trying to watch, a movie.

                 Something I have been pondering on the last few days is how we as humans never seem to be satisfied with any stage of our life. When I get to drive, when I get a job, when I get married, when I get pregnant, when I get that promotion, when I am better, when, when, when. Just listen to everyone, listen to yourself if you are doing it. I'm guilty of it everyday. For example, Jonathan is in school and is trying to find a job, in accounting if anyone reading this is hiring...., and that has been the goal for a while. Well, when he has a job, he isn't going to be home as much and who is to say I will like that any more than where we are now. Why can't we just be content where we are and trust the Lord. I think that is why we go through some of the trails that we have to face. If we don't, we might never be grateful for anything.
   Psalm 40:1-3  
1. I waited patiently for the LORD; 
   he turned to me and heard my cry. 
² He lifted me out of the slimy pit, 
   out of the mud and mire; 
he set my feet on a rock 
   and gave me a firm place to stand. 
³ He put a new song in my mouth, 
   a hymn of praise to our God. 
Many will see and fear the LORD 
   and put their trust in him.                

Day -1, AGAIN

Hello, Yep, stem cells will not be here till later tonight so the transplant will be tomorrow. I think my mom will be glad that she can be here. My day got a little better yesterday and I was able to take a walk off floor for a while. I skyped yesterday with Jonathan, Evalyn, and the puppies. It was bitter sweet of course. It was nice to see her smile and squeal a little when she heard my voice but didn't seem to get into it too much. Poor Wallace and Chloe kept going to the door looking out when they heard my voice. Both dogs slept with my mother in law last night, they miss their mommy. I was also able to do a little paper work yesterday, not near enough to keep up though. Today Jonathan said that Evalyn coughed on and off last night so please pray that she stays healthy. I got a little bit of sleep last night, but you know you can't really sleep in a hospital. I woke up around 3:30 am feeling very nausea and had some anxiety about the transplant. I took something but still feel really sick. I decided that maybe I needed something on my stomach and I was right. I managed to get down a few gold fish and some apple juice and I felt a little better. It has been difficult to eat very much to say the least, even the food I normally like to eat. I have already lost some weight but they say that is normal. I'm really to be over this cold for good so that I can at least go to the kitchen and out in the hall. Everyone that comes in has to wear a mask so it is nice to walk in the hall and see people smiling. So here's to tomorrow!

Day -3,-2,-1

My posts are getting shorter and shorter with the amount of energy I have. I remember some things from the last few days. I remember being sick to my stomach a lot, being too weak to do anything but lay here, listening to worship music hoping not to go insane, going to the bathroom every half hour due to fluids (even at night), being picked and probed a lot, taking chemo 10x stronger than I have yet, having trouble getting food down, terrible storms next to huge windows, worried about not being able to work,  and not being able to concentrate very well. I also remember my wonderful husband bringing me food that I might can hold down or even swallow in the first place, Evalyn playing with my hospital bracelet and smiling at me (I think she thought I was going with them), and my parents coming up to my room for a little while. I have successfully cried in front of most staff and the truth is that I don't feel good and I'm scared. Again, I know that God has a plan and I'm thankful for that, but this is some hard stuff. Since I tested positive for a cold, I can't even go to the kitchen and get my own food or get some exercise in the halls.
If the stem cells get here early enough tomorrow then the transplant will be tomorrow; if not, they may push it to Wednesday. Today I will try to get some rest and again try not to go insane. Even if I do, God is still good.

Day -4 and -3: Done with the Oven, Now for the icing

You can't see how swollen my neck was due to the huge ice pack!

I had to lay in this position forever! 

The huge radiation machine that zapped me. 

               Thank goodness I was able to get some sleep on Thursday night! I was so out, I didn't even wake up when they came to draw labs at 12 am. I never sleep that well. Usually I will wake up if someone touches, or even thinks about touching, the door knob. On Friday, I finished the last two rounds of radiation. I'm telling you, laying in the same position for that long is enough to drive you crazy. Silly me thought they would have an IPOD hook up but they did not, so I made a bunch of mixed CD's to take. I ended up leaving them there for those that come behind me. That last round was pretty emotional for me. It really stinks to have to do this much harm to my body in order to get better. I was trying not to cry because they don't want anything on your skin since it can make the side effects worse. I have to admit, I shed a few tears when they were almost finished, knowing there was a 99.9% chance that my ovaries were not going to be functional anymore. Not that Evalyn's not enough for us, but I never imagined I'd have just one child. Yea, I know, I know, God has a plan, there's always adoption, I'm young and you never know, yada yada. That doesn't help me feel better at this point. Not to mention all the other risks that come along with that much radiation. I swear they are trying to turn me into a paranoid schizophrenic.
               My glands in my neck are not swollen anymore and my bone and muscle pain I was having is gone. Very glad about that! My EKG came back fine, but they are still concerned about my high pulse rate. I feel that it has always ran a little high. They are going to keep an ear on it. Hee Hee. I still have a sinus infection, not a good thing to have when your immune system is being shut down. I'm pretty much on every anti medication possible right now and my tummy is not happy about it. Another side effect of the radiation, is that my salivary glands are not functioning correctly. When I take a bit of something, it's like I put 5 crackers in my mouth, except it tastes worse than crackers. So... eating is not going so well. They said that I need to try things that goes down easy, wet and mushy basically. Wow, that makes me hungry. I'm also on a diet restriction. I don't understand all of it yet but I know can't have any raw veggies or fruit. I was out of it when I read it the first time.  My BMT doctor is Dr. Flowers. I like him a lot, he looks like Tiger Woods, but that's not why I like him. He let me know that next week is going to be pretty bad and that there may be a short time where I'm not eating anything. Well, I guess it's a good thing  I never lost that last 10 lbs of baby weight! It is very hard for me to concentrate and to do much. Even writing this blog is taking forever. As I start to feel worse they may get shorter or Jonathan may have to take over for a few days.
                On Friday night, my sister and brother came to visit. We took a nice walk on campus and got some food at the food court. We were entertained by a group of what looked like high schoolers, sparring with foam weapons and shields. Jennifer and I agreed that if your going to do something like that, you should just go all the way and dress the part. It was such a beautiful day and I saw some gorgeous tulips. I took some pictures of them but I wasn't in the mood to stand next to two very very good looking people with my mask on for a picture.

Jennifer and Daniel, I love them so much!

I don't think my tulips at home are this pretty!

               I have been feeling pretty depressed the last little while,  knowing how long I'm going to be here and that it is going to get much much worse before it gets better. I even turned on the T.V. last night. I watched some good GA shows on PBS. I did get to move to a better room so that was nice, but then Jennifer helped me unpack everything so then seemed more official that I am staying for a long time. I miss Evalyn so much. It's hard for me to talk, write, or even think about her without crying. I know that she is being well taken care of, by my my mom at this moment. She is great with her and Evalyn loves her Grandma Kim. I just have to try to keep my mind of things and remember that if this had to happen, this is the best time. It would be awful if she could call me and she was crying also. It's true when people say that it is easy to praise God during the good times and then not to during the difficult times. I had to make myself listen to some praise and worship music this morning and had to make myself pray. I know that this is a time that I can really seek the Lord and he can bring our relationship to a new level. I just have to do it even when I don't feel like it.
            I had a lot of medication I had to take today. It was insane. It's all making me feel out of it, sleepy, but ready to go at the same time. I'm going to probably sleep on and off the rest of the day. Tomorrow, I get to see my hubby, Evalyn, and my Mom!

On Thursday, when Evalyn and mom came to visit. 

I got a kiss!

Day -5: Stick a Pen in me, I'm suffocating.

                      I'm pretty much drifting in and out of consciousness while I'm writing this  because I'm so tired.                          
If  I leave out an important part of the story that you can tell, feel free to ask me. See just right then, I started zoning out.  They had to really increase my pain medication last night due to the muscle and bone pain, along with my neck swelling up. I looked like a swimmer, being bald and having a huge neck. I think that's what strong swimmers look like. I have a pretty high pain tolerance and a high tolerance to medications. We tried stronger pills but the pain was so bad that I was still crying and shaking, so we started some IV pain meds. These helped the pain immediately, but also made me feel like a zombie, and the Zofran was already doing that. Now, this what happens, you have a side effect, that has a side effect, etc

Cancer=Radiation= bone/muscle pain/ swollen glands= pain medication= lack of concentration/

 itching skin= anti itch medication = freak out and think your going to die.

                  It was 2 am in the morning and I had not slept at all do the the pain and itching. They gave me some benadryl, nothing new to me and that's when it happened. She was giving me the benadryl when all of a sudden I sat straight up, my throat felt like it was closing in on me, and I COULD NOT BREATH. I'm not kidding. The look on the nurses face was she was just as  freaked out. She was asking what was wrong but I couldn't answer. I made the "choking sign" because I didn't know what else to do. Finally, I managed to push out "Get Help." At that point, I was able start taking very small painful breaths that sounded like some sort of animal . I was really thinking that someone was going to have to cut my neck so that I could breath. Then, slowly, I started breathing better and better. That was of course not before the adrenaline kicked in since I thought I may die. Um, I think I decided suffocation or drowning is not the way I want to go . I've had 2 more rounds of radiation today, a Cat Scan, a ton of medication and have barely been able to stop going and waiting, going and waiting. We got the results of one of the test and it looks like I do have the common cold. I'm getting some bags of "stuff", one of the me is IV Immune Globulin.
                     The highlight of the day was that my Mom brought Evalyn by for about and hour. She was so happy to see me and looked cute in the pink and white apple outfit that Grandma Kim bought her. She is already wearing some 12 month ! We put out a big blanket on the hospital lobby floor and played for a little while. Sounds gross, but it's a beautiful lobby, like a house, and the blanket will be washed asap.  She knew it was her mommy behind the mask and just smiled at me. Puppy Dog is her first "sign." that she has learned, but I think the first spoken word will be DA DA. He deserves it :).
                      Uhhhhhhhhhhh... they just came in here saying I need an EKG cause my heart rate is too high. Sometimes I cuss in my head and don't it out loud, I need to work on that.

Day -6 Killing me softly with radiation

Until I leave the hospital, we will number the days. It is -6 today because the day of the BMT is day 0. Then my new life begins, hopefully. I had radiation at 6 am this morning. It's a long process. They turn me on one side, line me up with the laser grides, take an X ray of my lungs for the placement of the lung blocks, and then start the radiation. Then they turn me over and do that all over again. We were lucky to get a room on 8E pretty quickly this morning and I'm already on the list to get a better room, hopefully tomorrow. I'm not unpacking yet. Jonathan had to leave this afternoon but not before we had one of the best burgers I have had in while. It was not from the hospital. I had radiation again at 1pm. As I waiting for my turn with the machine, I met a nice man who's wife was in there getting radiation on her abdomen. He said that she was having to stay here in the Hope Lodge by herself after tonight and was very nervous about it. I gave her my number and told her I was staying alone too :) I like it that way, really. I don't like to be around people when I'm sick or in pain. Speaking of pain... I'm having some horrible pain caused by parotiditis. It's like the mumps, so my jaws and neck are swelling and hurt pretty bad. So far the little pain pills are not working. I might have to go for something else. I would say I have not been in this much pain since the last week in Oct, first week in Nov. when the "shit hit the fan". I'm also having some bone and muscle pain in my hands and arms which makes it difficult to type or do anything else I want to do. But, I'm doing it anyway, because if I don't, I will still hurt and might lose it. Not sure what "it" is at the moment. I'm holding on the the next verse cause it's only the first day, wait, it's -6.

1 Peter 5:10

 ¹⁰ And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.

Don't stare at the Beam

               It was an overwhelming two days at Emory to start getting ready for the bone marrow transplant (BMT). All in all, everyone was very nice and on time which was great since it was pretty stressful. My mom came with me and we met with radiation, had an EKG, Echo, CT scan of head and chest, discussed a clinical trail I going to be a part of, met with the transplant coordinator, social worker, labs, and a bone marrow biopsey. Whew!
       I will be admitted on March 23rd and have the transplant a week later. The day before, I have to have a different picc line put in, one will 3 tassels instead of two.  Radiation sound horrible and they pretty much tell you at the amount they have to give my whole body, I will have an increased risk of EVERYTHING for the rest of my life.They also said that I will never be a runner. I was worried about that, ha ha. Good thing I hate to run.  I will have it twice a day for 3 days for an hour at a time. At least they will play any music I want while I'm in there. As far as side effects that first couple weeks, I will probably have some skin discomfort and be sick at my stomach. I will also have chemotherapy before the transplant. They said that the first week after the transplant, I will feel my worst, and may have mouth sores and be pretty sick. This is not my idea of the best way to spend the first week of spring but I may be able to wear my small jeans again.
           The CT machine is pretty wild. It reminds me of Star Gate. Not a very good movie in my opinion but my father feels differently. When you are in the machine, you look up and there is a sign under the beam, that says "Do not look at the beam." Well too late, you should have said something before I started looking around. I almost fell asleep on the strecher when I was getting my ECHO. I must have been very tired because some women rubbing a cold thing that has Lub on it, would usually make me a little uncomfortable. Maybe I've just been through so much, nothing is surprising anymore.
          We found out the my perfect match is now "unavailable". It's pretty disappointing but Dr. Khoury and the team felt that a 9.5 out of 10 was still great. I'm not sure what that means for my chances of survivals and I'd rather not get into the statistics of things... it's too scary. The team talked to me about a new drug they want to give me to reduce the risk of Graft Verses Host Disease. I will be the fifth out of ten people they want to use this drug on at Emory for non related donor BMT. So far they feel that the the results have been good. They have used this drug for other types of transplants such as kidney.
             My mom and I spent the night with my aunt Sheri and uncle Toni since they live pretty close. I was able to meet my cousins baby, Ethen, for the first time. What a cutie. Bella, her 3, excuse, me 3 and a HALF year old daughter is a hoot. She asked so many questions that I started asking one for every one that she asked me. She told me that after college she was going to get married when she was 22. I asked her what she was going to major in and then rephrased it, what do you what to be when you grow up. She said a princess. I asked her how much that pays, and she said five. Later, when she realized I didn't have any hair, she told me that when my hair grows back, I could be a princess too. Guess they don't make princess dolls that have cancer :). She brushed my pretend hair for me and I showed her pictures of when I dyed my hair blue. Then she kept asking when did I die and when was I going to die. I finally realized she was confused with the word dye and die.... easy to do. Before, we went to bed, I asked her how many children she was going to have and she said five. She loves little Evalyn Rose and said that she wants to see her soon.
            The next day we went back to Emory.  Oh man, the pschosocial assessment that the social worker had to do was painful. They ask questions to see if you have any needs before the BMT, basically to see if you are psyco. Questions such as " How did you feel when you were first diagnosis?" Seriously? Hmmm.... I felt just swell thank you. Like all this must be happening for a reason and God is in control and I'm just going to be fine. BS, Give me a break, really, was she trying to make me start crying in front of my mother, which I hate to do because then she is going to start crying and then they will try to put me on drugs. So, I gave the general response of anger, sad, confused, yada, yada, lets get out of here. Then there was "How are you coping on a day to day basis." Really? Well, I get out of bed each day and try to go about things normally because life still goes on.... take your medicine, change and feed the baby, let the dogs out, etc. I gave the sane response of  "my faith and support of friends." Some how on a yes or no question and she would type three sentences. I have to get a copy of that thing. Hey, I'm a social worker and have had to put others through awful assessments myself, so I can complain if I want to, it's not her fault.
               Labs and the bone marrow biopsy went by pretty quick and we ended up getting out early. This lady, Jessica, in the clinic, does a great job. It was the least painful biopsy that I have had so far. I'm really sore today but it wasn't a horrible experience. I forgot to ask them exactly what they are looking for in this biopsy. I believe that I have to be in remission in order to get the transplant and that is what they are checking for. I'm in the process of scheduling baby sitters and getting a grip on the idea that I will be away for so long. I can't say that I'm not scared that I might not come back, but I'm sure everyone feels that way when they have to go in the hospital for something major.