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.