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Catch up time

Posted Aug 19 2009 6:32pm
Every day I think I need to update my blog, it seems as if I do, and then I realize I did not. Chemo can do that to you. Tonight I have some quiet time so I thought I would do just that. I finished up my consolidation chemo on Saturday around 3 and we drove home. While it was wonderful to be home, I did not feel well at all. This round left me feeling so ill, the steroid takes 48 hours to wear off, so I had what felt like shakes and uncomfortable movements for days, mixed with everything tasting awful and being beyond fatigued I had some miserable days. I think it was Wednesday before I felt like all was going to be well. It feels so bad not to feel well and have any interest in anything, and not want to stay awake to play or be with your family. I rounded the corner Wednesday, suddenly I could eat and drink again, food tastes somewhat like food again and drinking - well that felt great and since then I have been feeling better each day. I am exhausted, but at least feel like I can pick my head up and think, things that are pretty important :)

My blood counts have dropped, tonight as I type this post I am sitting at Coral Springs Medical Center outpatient center getting my first platelet transfusion. It literally has taken all day to get it done. I went to doctor at 10 am, then to hospital to type and cross my blood and order platelets, then wait till go back and they are ready. I was back at 3 pm like I was supposed to, but the two bags ordered did not arrive until 6:25. Only one of two bags is here, so while this drips, hopefully the second bag will arrive and run through before they close at 8 p.m. I sent Steven home to work and be with the kids instead of sitting here with me. This is what I will do for next week or more as I need outpatient transfusions. When I need red blood cells they take 6 hours or more I been told to transfuse once started, so we will be coming early Monday am at about 6:30 to start the process, then go home and wait for the call they are ready. I will spend the day here getting the transfusions, while Steven works and the kids are taken care of and then start school. I will wait until officially ready and here before I come and sit and get the transfusion. Outpatient is great, you go home, but I still see some long days ahead of me.

Even with all medical things we are tackling each day, life still is running regularly at home. School starts Tuesday, everyone is all set with clothes and supplies, it was exciting to shop for Sofia this year also, as she starts kindergarden. She is very excited and proud to start, and Christian even offered to walk her to her class when she was worried how would she get there. I love that at times they can be so caring towards each other, most times there is lots of bickering and fighting going on. I think those two spent way to much time together this summer. I have already met with Sofia's teacher who seems so awesome, she knows our family and Christian from when he went to summer camp and we talked about the summer the kids have had, our situation, etc. She was so great about it, I feel relieved knowing she will have such a loving teacher. Christian found out his teacher today and Monday they have open house so they can meet their teachers before the big day on Tuesday. Our situation is unique in that the kids will start school and stay there till we are ready for transplant. When it is time for me to have my transplant I have to be in Tampa for 3 months and live there, and we are all going to be there. The kids will be home schooled during the three months but go back into school when we return, no easy feat, but they can not be without us or vice versa for that long. Since that is at least a few months off, we are focusing now on the fun of the new school year. Despite their Mom being re-diagnosed with cancer one day after summer break began, I think they had a pretty fun summer and they are happy, I am very thankful for that.

On the transplant front, we met with the nurse coordinator while I was at Moffit. She gave me a BIG booklet to read, I can not yet bring myself to open it, it describes the entire process, etc and right now that seems to overwhelming. I am in the database, they are searching for a donor, next week we should have pre - liminary results of how many potential donors come up. It can be a lot or a little. From there they start screening, seeing who is best, contacting, etc. There is a lot involved and it can take months, but at least we are started and should have some information soon. I will be sure to update when I know more.

Right now I am focusing on this day and tomorrow and getting my counts recovered and feeling better before I can think about another round of chemo to keep me healthy or transplant to keep me healthy forever, seems easier this way.
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