Will write more later, just an update.
First - finally done with steroids, which has finally left me with my first full evening of sleep! Yay. After 19 days of less than a single 7 hour evening, I got 8 hours, deep sleep and the doctor confirming it was all steroid driven. The steroids were great and limiting physical back issues. Today? Still feeling good but sleepier last night, so all good.
Second, SKM visit today by 11 in NYC. Heading out shortly and 2 sons joining us to have a conversation. No information no knowledge just learning to start. 3 other potential docs to speak with or potentially meet, one in Florida with a very new learning I have and one at Duke College. So conversations will be interesting and needed. High likelihood may be no switches and having to make some choices of who/where/when in about 6 weeks. But right now I'm leaning that we may stick with the current group.
Third, visit from my brother yesterday, just a walk to town and lunch at a diner which was great. Good exercise, but he already knew several people with various versions of my particular result. Most have lost lives already, which is a known, but luckily knows several others who survived for years. Will share more later when I'm back.
More to come!
(sorry for delay and shortness at 7am on 2/21 as I was rushing to leave and get to the doctor - some new info and updates to follow but sorry with the rush and slight misspelling then silence and no follow up)
