Good evening.
Dean had his first treatment today, his spirit seems to have lifted afterwards. I think Dean was petrified of the chemo, fear of the unknown, and had worked himself into a depression. Now that fear is less today, he is a little more like the Dean I know.
Dean was a little weak when we arrived home, and sat in his rocker for awhile, he fell asleep for about thirty minutes. He woke up and ate all of his dinner, yesterday he didn't want to eat at all, and he is now taking a shower. I know he may become weaker or more tired as the treatments continue, but I think Dean is ready to fight now.
Linda, you have to be so concerned about Al, especially with your upcoming visit to Moffitt.
It is so sad to read that you were not able to be with Al during his first treatment. I was able to stay with Dean today, he was so nervous when he walked into the treatment room, so I know he was happy I was there. The whole session lasted a little over three hours, they gave him an IV to keep him from becoming dehydrated, Benadyrl, a steroid medication, something to keep his stomach from becoming upset and finally the Dacogen (forgive me, I am not a nurse, but every time they started a new bag, I asked what it was for, I am just writing what they told me
). Two hours into all of this, Dean said he was hungry and asked me to go to the McDonald's across the street and get him a milkshake.
The nurse that did the treatment use to work at Moffitt, and she told us that Dean's oncologist interacts with the center. This nurse worked with MDS patients at Moffitt, so she gave us a lot of information on Dean's treatment and what he could experience in the future. She told us about the trials and how many patients have had good outcomes when all hope seemed gone.
You are so right about being your own advocate, the nurse at the oncologist office stressed that to us today. She told us that we may have to scream and yell sometimes when we are in the hospital because many medical professionals are not aware of this disease, we will have to make them aware of the risks if Dean is there for an infection.
It would have been awful to go that far to Moffitt and not be able to have the labs done, I am so glad that you noticed they were not scheduled and called to check on them.
How long will you be at Moffitt?
I hope Al's temperature goes down, it is a terrible time for this to happen. I will say lots of prayers tonight for both of you. You will be in my thoughts, Linda. Please let me know how you are doing! I am sending you a big hug - I hope you can feel it. (HUG)
Sally, you are so right, I think what you posted is beginning to happen now. Since last week, we have been concentrating on MDS. Beginning today we are now concentrating on Dean, and not MDS. We will certainly be busy, and maybe that is a good thing, we don't have time to think of the future, only on the present. I guess it is day to day, isn't it, we can't look into the future and we can't change it either. I know there will be difficult days ahead, but if I think about that, fear will overtake me, and then I won't be strong for Dean.
So tomorrow is another treatment, thank you to everyone for getting me through this day, your strength is making me stronger, and I feel safe knowing on those days I am not so strong, you will be there for me.
Good night and love to each of you!