Here I am almost two months (again), since my last post. I don't know where it will go but I will try to be brief (famous last words).
Ben is still hanging in there. He's the most stubborn man I know and it's amazing at times that even now he seems to just refuse to believe he has cancer and is at home on hospice. (Well he gets it but doesn't dwell on it). We just try to live our life day to day as usual (although he sleeps a lot). He still has good days where we take a drive, go shopping, get cranky, argue - then move on to the next day.
Ben still has his biliary drain and his lung drain (although we don't use the lung drain - it's just a "leftover" from the hospital). He still drains at least 1000cc's a day from his biliary drain . While he wants his tubes OUT, there really is no way given the amount of drainage. He did have a CT scan a month ago to see if the lung drain could come out - but that gets complicated with insurance while on hospice, and in the end wasn't worth the trouble given the biliary drain can't come out. The scan also showed increased activity in his stomach - which wasn't a surprise, it kind of validated some of his increased pain.
We did consult with MD Anderson one more time (via phone), and they agreed there really isn't much to do about the biliary drain. They did say they might consider a low dose of Gemzar for Ben (since he is tired of sitting at home "waiting to die"), but in the end - I know Ben doesn't want more chemo.
Meanwhile, Hospice has been great. It's kept Ben out of the hospital - he had one infection about a month ago which typically would send him to the hospital for 5 days…but we managed it at home with antibiotics from hospice and he's been ok ever since.
His pain does seem to be increasing little by little - especially in his stomach. Oxycodone at the right intervals seems to help - but when it gets the best of him - the pain can get ugly and I administer Morphine orally. That's only happened a few times, but hospice nurses have given guidance along the way (and they come over any time night or day if necessary). At this point though, they still generally come once a week to check in - and once in a while if I call with support for pain management.
That's all for now - I'm pretty certain nothing will "improve" from this point - but like I said Ben is stubborn. We had a good Thanksgiving with some friends and family and are hoping for a good holiday "boat parade" party on 12/13 (we are in fort lauderdale after all). Having all of this at this time of year is always particularly sad (and Ben's birthday is 12/19) - BUT…..don't give up. Ben and I have been celebrating "a last christmas" for 4 years now…..
All of my best to all of you - caregivers and patients, stay strong.
Just think about today. Tomorrow will take care of itself.