Good evening Greg, Linda and Sally,
Greg, I was able to add a profile picture, thank you for taking me through it step by step. You made it so easy.
Linda, I picked up Ensure this morning when I was shopping, and I was able to get Dean to drink a bottle. All day he has been telling me he doesn't feel like he wants to eat, so I was happy to see him drink the Ensure. I purchased two packages. I use to always be after Dean to eat healthy and watch his weight, now that doesn't seem so important anymore. I would probably be so happy right now to see Dean eating a greasy cheeseburger with fries.
Thank you for sharing with me that you still get scared. I know I have to be strong for Dean, but the thought of seeing him suffering is overwhelming to me. I want to be able to take it all away. He is such a kind and caring person. When I think of my life without him, I don't know if I can go on, he is my life. Without Dean, I am all alone.
Linda, please let us know what happens at Moffitt. I wish I could wrap my arms around you from here. You and Al will be in our thoughts and prayers.
Thank you for the hugs, can I give some back to you. (((HUGS)))
Sally, Dean is suppose to wear a mask if he goes outside or we have company, thankfully he has been very good about wearing it. He is also washing his hands constantly. Before this terrible dx, two of our favorite activities were going out to dinner and going to the movies. I know Dean wants to be able to do that now, he is upset that all he is doing is sleeping, he is so tired.
I am so scared because I have read about the type of MDS Dean has, RAEB-t, and everything I have read does not give me much hope. I don't want Dean to know, he isn't one for getting on the computer, so I don't think he knows that things don't look good, yet I do feel he knows in his heart. Dean is such a caring and giving person, he is my life and I don't think I can go on without him, he is all I have and I am so afraid of being totally alone when he is gone. I also don't know how I will be able to deal with seeing him suffering, how do you get through it Sally? I tried to find your story, but I wasn't sure where to look. Where do I find "Clinical Trials".
I do pray, so many prayers, they give me hope, and then I slip back into my fear. Tomorrow is Dean's first treatment with Dacogen, I want to believe it will give Dean a little more time and some peace from this disease for a short while.
Thank you again to each and everyone of you for all your kind words, thoughts, prayers and support. You are each facing the same battle, and yet you come here and give me the strength to get through the day.
Good night! Patti