July 8 ,2012

I had to check the newspaper to see what day it was.  I vaguely remember getting the Sunday paper, so I  kinda thought it was still Sunday.  The days are blurry and meld into one another.    Tomorrow Roger  will travel to another doctor.  I'll start with his regular doctor call and try to get an appointment and then call the oncologist.  Roger has a pain near the base of the skull on the left side.  Pretty sure it is one of the locations of tumor growth, but  maybe it is (as Roger will tell you) just a crick in his neck.  He has admitted, finally, it could be tumor, maybe...  I called hospice last week to talk to Circle of Life,  the oncologist approved the order, but Roger answered the phone when they called back and didn't think we needed to talk to them yet and in talking the hospice lady said he sounded like he was not yet ready.   And he has yet to start chemotherapy, and hospice here is strictly hospice (prognosis of less than 6 months to live).  I was hoping for just palliative care which is help with symptom control and while hospice does palliative care, hospice won't come in until the patient has more or less exhausted curative options.  From our conversations with the urologist, chemotherapy will not do much at this stage, but on the other hand the Provenge treatment has at least stopped the metastasis, and on the other hand the tumors that existed before the Provenge are still increasing.  Roger is weak and has lost a lot of weight.  He has gained about 4 pounds since the urostomy surgery, but at 146 pounds is frail.  I will continue to support Roger in whatever he wants to do, but it does hurt my heart to see him struggle.
As for the last 4 days he has been taking the Hydocodone, or Oxycodone every 6 hours, along with an occasional valium, and/or a muscle relaxant when he can't stand the pain.  And tho it sounds a lethal combination, at least he can sleep (between 12-16 hours a day).  Trying to be upbeat, and we've managed to get friends over to play poker and it works to get his mind off everything.  Don't know what tomorrow will bring, not sure I want to know, come what may, we will figure it out.  As for me, I am here by God's grace  and the prayers and support  of so many of you out there!