One of the worst weeks yet

Hi everyone - We have just gone through, what I think, has been one of Ed's worst weeks yet.  His pain levels are unbelievably high, his weight is astronomically low and the jaundice is very prominent.  I should have made him go to the ER on Friday, maybe then we could have had the shunt placed already and he could be putting some much needed weight back on.  My fear now is that he won't be able to handle the procedure very well and lord knows what will happen next.

CT done on Monday 8/1 - trying to get the procedure to have shunt put in for Wed. 8/3 - however, seeing that it is already 3:25 p.m. on Tuesday - I don't have a good feeling about this.   I tried to explain to the oncology staff this morning that he IS STARVING TO DEATH and that it was URGENT.  Same as I did last Friday, but, ya know, whatever....    Needless to say that not being with him this week and dealing with the ever-so-slow health care system, I have lost it.  I mean, we all knew it would happen eventually, and I think I hung in there pretty well for the past 17 months.  I am toast.  Stick a fork in her, she's done.  Nerves, shot.  Emotions, over the edge.   This past week has seemed like an eternity.   Here is what I hope for, that Ed can have his procedure and have enough time to recover to, at the VERY least, get to see Alice Cooper next week.  He has been so excited about this - truly, if we just make that we will be lucky.

Thank you to everyone for your messages and posts, they are appreciated and are what help me get through. 

A very special shout out to Rich & Peggy Hovan of Brookway in Brooklyn.  They were kind enough to give, yes give, us a hospital bed and Rob & Cigar picked it up and brought it to my house yesterday - we are already for some serious recovery.  Ed is also getting a hospital bed at his house and we are hoping this will help with recovery from the procedure and with controlling his pain levels.  The Hovan's couldn't have been nicer and I truly enjoyed meeting them - I loved telling them that I have some very dear friends from their street, it was most definitely a "brooklyn" moment.  So, thank you Hovan's, it is very much appreciated and we will honor your request to pay-it-forward when the time comes.

So, maybe a shunt tomorrow, maybe not....   Will continue to keep you all posted.  MK