Sandi,
Thanks for asking about my own situation. I'm the luckiest forum member here because my wife (the patient) beat this disease. She was originally diagnosed with aplastic anemia, underwent treatment, was re-diagnosed with MDS, and had a bone marrow transplant from an unrelated donor who was found in the U.S. registry. The transplant cured her MDS. Those years in the trenches were rough but they made us appreciate our lives in a whole new way, and led us to stay involved in the AA/MDS/PNH community, hoping to share what we had learned. My wife's story is
here.
Your comment about "life on the surface" rings true. MDS doesn't make you look sick and some patients don't choose to talk to their coworkers or neighbors about it. Sometimes it helps you feel normal that way. It's like you are leading a double life - the medical one and the "real one".
We learned not to make definite long-term plans, and for a while we had to live one day at a time, but we thought of it as postponing plans, not canceling them. Sure enough, we eventually got to take an international trip that we had been talking about for many years.
You asked about the frequency of bone marrow biopsies. They should be done only when needed to make well-informed treatment decisions. My wife had a couple right at the start, then a few more on an irregular schedule, to track the progression of the disease and changes in her chromosomes. After her transplant it was once a year to watch for any backsliding.
If you already know that a transplant is warranted, and that Paul has a couple of bad-indicator chromosomes, then it makes sense to me that he wouldn't need further biopsies for now (unless for some reason his bone marrow blast count needed to be assessed). The question patients should always ask before an invasive procedure, like a bone marrow biopsy, is what information it will provide and whether it will affect subsequent treatment. In your case it doesn't seem to be needed. After a transplant you'd want to know if "the cell factory" is starting up, and that's the purpose of a post-BMT bone marrow biopsy.
I can only laugh at my own assumption that a trip to Bali is a big trip, because it would be for us. You probably just hop in a canoe and paddle a few miles north! But I'm sorry you had to miss a planned trip and especially a joyous occasion like a wedding.