Saturday, June 5, 2010

She's Living a Life That She is NOT Used to Living!


The past 3 days have been pretty quiet around here. Rianne has really been concentrating on laying low and getting some rest. She has slept and rested more this week than any of the previous. We’ve tried to pattern what her days will be like and are getting close to predicting them as they arrive. She has dropped into the Nadir Period (low end of the cycle) right around the end of the week of a Chemo Infusion - and we’re there again, so it may explain why she began to feel poorly this evening. The past 3 days went fine for her, but her stomach began to get upset tonight and she didn’t feel real chipper about much. She climbed into bed around 6:00 and I ran into town to grab some groceries. She ate when I returned and has been in bed since.
We’re hoping it doesn’t happen again, but during the past two Nadir Periods her blood counts have bottomed out. When her red blood cells get too low she becomes anemic and can’t function as well as she normally does. She has trouble thinking and even speaking. She will hold a conversation with me and stop right in the middle of it, then try desperately to remember what she was talking about. It frustrates her to tears sometimes, so I often remind her of what she was talking about to redirect her and it tends to snap her back into the conversation…but not always! When her counts drop her eyes begin to get cloudy and she gets that vacant look in her eyes. I can tell that she’s fighting to stay strong in an attempt to prevent having another transfusion, but it is what it is. She fought it hard during the last cycle and was disappointed to hear that a transfusion was necessary. I’m trying to keep her expectations lower this time so that she doesn’t allow herself to get set up for disappointment again. She’ll keep eating right and keep fighting to get good blood count numbers, but this time she won’t put so much pressure on herself if the counts bottom out. As I said earlier - it is what it is. We all need to remember that Rianne is 75% what we are with her blood disorder holding her back - the Thallesemia Minor makes her blood counts lower than yours or mine would be by about 25%, which is a HUGE disadvantage for her EACH time she has a Chemo Infusion. By the end of the week it could be inevitable for her to need a Blood Transfusion. We are trying to stay positive and hope that it isn’t necessary, but we’re also “keeping it real” and are prepared to go through it again if the need arises.
Although we are focusing on the positive, it’s really difficult to look forward to the duration of the treatments and the radiation that follows. That’s where YOU come into our lives. We may be glued to our home, but your emails, texts, cards, letters, gifts, meals and phone calls are what really keep us going! I still have things to do away from home, but Rianne is unable to leave home except for treatment related visits. She’s living a life that she is NOT used to living! What she really just wants to do is get out and play a little…but right now she just can’t do that with her energy levels decreasing as they are.
We both really appreciate all that you have done for us and hope that you know how much it means to us. Without you this would be absolutely frightening to go through. Thanks again for your love and support and especially for your friendship!

P.S. Thank you all for signing up as Followers of this Blog. Who are you Auntie Cookie?! The photo is too small to see you well enough!

1 comment:

  1. Auntie Cookie... is "Auntie Katie"... but Carter "Hassenbooger" couldn't say his CA or KA sound when he was 3... and dubed her Cookie. :)

    ReplyDelete