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Alyse,
When you've won a previous battle, as you have, and thought that was the end of it, this kind of setback can be a huge disappointment and sap your fighting spirit. Being told that your counts are great and then only days later that you have borderline AML would be devastating news to anyone. But you don't have any choice but to get back in the trenches with the doctors. The trial sounds promising, and Dr. Roboz is one of the best of the best, so you're doing the right thing.
I've noticed the pattern that so many of us follow. Diagnosis and re-diagnosis are always followed by a flurry of activity: tests, deciding on the treatment, starting the treatment, the appearance of side effects you have to deal with, and often a drop in blood counts (it gets worse before it gets better). Then things level out. Treatment becomes a routine, and then the long recovery process starts. That's when you have a better view of the big picture, that you haven't beaten the disease yet but you're dealing with it and carrying on the rest of your life as normally as you can. You've been through this at least twice now, Alyse, and if you end up getting a transplant it'll be the same pattern yet again. You asked if you'll be spending a lot of your time at the hospital. Yes for now, less and less later.
People can argue about whether or not we are brave when we have no choice but to fight a disease. You haven't given up and that's what bravery is about. You've shown how resilient you are and you've been honest about your positive and negative emotions. I hope that reaching out to others brings you support and strength in return.
Will you be able to go on your planned trip? I expect that you will. You might have to postpone it depending on when your birthday is and how the treatments go, but it'll be the same trip whenever you take it. When my wife was being treated, we knew that a major trip we had planned for years was in jeopardy, and at times we thought that dream was gone entirely, but things look different after your condition has stabilized and you know what you can and can't do.
The transplant option used to be much more daunting for those over 60, and having a sibling donor used to be a huge advantage over a donor from the bone marrow registry, but those factors have become less and less important. Deciding whether or not to go to transplant can be a tough decision, but in your case I think it will become apparent what's best, depending on how the Vidaza+Pracinostat treatment works and whether a donor is identified.
I'm sorry you are back in this position, fighting for your health again, but I know you're headed in the right direction. Please count my wife and me as members of your support team.
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