Kathy,
You have found the right forum. Believe me, we ALL know what you are going through right now. Things will get easier. If you read through these threads, you will see the fear that we all have when our loved ones are first diagnosed. If you are like most of us, you had never heard of myelodysplasia before July 3rd when your husband was diagnosed.
I'm sure you've probably read and gotten the pamphlets from the
http://www.aamds.org/ website.
If I've learned anything on this rollercoaster ride, it is: Don't be afraid to ask questions, get second opinions, and be your husband's advocate - you must do this!
And I promise that that sick feeling you probably still have in your stomach will go away eventually, only to rear it's ugly head when the numbers aren't what you think they should be.
But just know that there is hope and that there are a lot of new trials going on. My husband did not respond to Vidaza (which is similar to Dacogen) and so he is now in his third clinical trial and we are NOT giving up. One of our doctors told us that there have been more advances in MDS in the last two years than in the previous ten and new trials are being introduced all the time.
I hope and pray your husband will have good results with the Dacogen. Please let us know how he's doing. You are both in our thoughts and prayers.