Hello Joan Greg and Beth,
Dean isn't writing today, his spirits are very low today, so I am going to post. Please forgive me, like Dean, this is all new to us, we only got the dx on Friday, so it has been 5 days.
Since the dx Dean has been trying to be strong, although I know he is so scared. Today has been a really bad day, he keeps saying he doesn't want to leave me, and he is afraid he will be a burden. I tell him over and over again we are in this together, it will be our fight, I don't want to tell Dean that I am also afraid.
I am glad that Dean found this forum, it is more helpful and supportive than other information I have been finding online. Because I also care for my 89 year old mother, I am feeling overwhelmed, I can't give both of them my complete attention, my mother needed me today, and I had to leave Dean when he was at a very low point. When I was in the car going to take care of my mother I just broke down and cried, but at least no one saw me doing that, I can't do it in front of my mom or Dean.
Yesterday Dean and I were discussing contacting Moffitt after his first round of Dacogen, today he said he has decided he doesn't want to go to Moffitt. I decided not to mention it again, maybe it is just the fear talking right now. A lot to take in within the space of five days. Thank you Beth for telling me about the records, now I will be aware of that, I wouldn't have known otherwise.
Thank you Joan for your support and kind words. Dean and I do not have a family, we are both only children, and have no children, so we are on our own. Words of encouragement from these forums are going to help us get through this, I know that just from the few threads I have had a chance to read.
And Greg, what can I say. Thank you so very much for taking the time to explain to me the different lingo and what to look for. It is looking less and less like a foreign language. All we have for the moment are the results of the lab work on Tuesday. I can't find anything showing AMT or LYMPH.
Tomorrow Dean goes for more blood work, and Friday he will have a transfusion before beginning his five days of treatment with Dacogen on Monday. I will ask about the BMB report tomorrow.
Hospice was here today, they were so kind and understanding, said Dean may want to talk to someone who will help him with his fears. The nurse was so nice, told Dean he doesn't look 75, that made him feel like a million bucks.
The Hospice nurse indicated that Dean was dx with RAEB-T, I thought the oncologist said RAEB-1. Are they the same?
Thank you again to everyone for being so supportive and caring, it means so much to Dean and I, especially to me, knowing we will not be fighting this alone.
I hope each of you had a happy July 4th. We are going to watch the fireworks from D.C. on the television tonight. I use to work at DisneyWorld, (research department) will miss seeing the fireworks at the Magic Kingdom.