Jennifer
First of all, I pressed the wrong button, landed on your page and saw that you haven't published yet. Your note to me was so raw and wise. It would be compelling to write and share. It doesn't just lay out the situation, it points the reader into thoughts of managing it. The heartbreak comes through loud and clear. If you were to write something I'd think about sending it to Invisible Illness or Narrative Arc as two I'd think of to start.
Im so sorry for your pain, but enlightened by your handling of it. martha