@buzzltyr57 Bruce, I really appreciate the thorough post you did at the beginning of this discussion! As an active blood cancer patient, with additional health concerns, for me, having everything laid out to me has given me the whole picture. Yes, there may be some changes/modifications along the way, but having the handle on the big scene is comforting. There are fewer surprises, and if there are changes downgrading a treatment, all the better! Often, we cling to what is said, and if/when the team needs to upgrade a decision, our mind runs to, "but you said xxxx, not yyyy, and I'm not ready to accept that!"

Be an involved patient. Take notes, ask questions, write down what you hear. Ask for a social worker to aid you through everything. Don't be reluctant to ask friends/family/faith community for help [it sounds like they are already on board with that!] Graciously accept offers of help. Have you considered writing down your experiences, in a journal form?
Ginger