Hi Catherine
I know how you feel, as I was in your situation 12 months ago. Had never heard of MDS. You feel like you've entered a labyrinth with no way out at first. I hope you don't mind me giving you some advice from my own experience.
Knowledge is power. Learn as much as you can about MDS RCMD. (
http://www.aamds.org/about/MDS/types could be one helpful website for you). Don't make any decisions unless you understand the implications. Ask your specialist lots of questions and research, research, research.
If you continue stable don't rush to treatment unless your specialist thinks it absolutely necessary. I have read so many stories of people suffering from the effects of the treatment itself.
Live as healthfully as you can - eat a healthy diet, drink lots of water, be careful with hygiene (esp hand-washing), exercise daily even if you don't feel like it (walking is good), and you might be surprised how well you continue to feel! If you believe in God, rest in His arms each day and experience the peace which results.
The BMBs are a necessary evil - 6-monthly seems to be a fairly normal frequency. I have monthly blood tests. My specialist gives me a copy so I always know where I'm at.
I wish you all the very best and will look forward to hearing how you're getting on.