Topic: my husband is running out of options
hello. I haven't posted in a while because our rollercoaster keeps spinning out of control. Bob was tolerating treatment for his recurrence pretty well(he finished one round of gemzar and tarceva and had no worsening of tumors-but no shrinkage) He has one more treatment to go before 2nd scan. He has run fevers all along, especially at night and has been having trouble with keeping his bile stents open. We started having to got for total change at 8weeks then 6weeks and now this last time it was only 2weeks. Bob saw his primary doc earlier this week and the doctor brought up hospice care with me, the doc feels since Bob has heart failure he may have to stop treatment sooner than later. I admit to pushing a little to find out where we stand and he said Bob has months , not years left to live and that it would be better to get hospice involved now than to wait. It kind of freaked me out to hear that even knowing how devastating this disease is.
Bob had a very bad week this time and spent most of it severly nauseaous and vomiting anything he took in and on top of that started having bad bile drainage from around his stents. I had to take him to the vomiting under control and hydration. Yesterday he was in to the interventionist to get the bile problem adressed, when that procedure was over the doc came out and explained that the cancer had spread into the bile-loop that was put in place through his whipple procedure to replace damaged bile duct. Now Bob has a bag on one stent site and has to have drains flushed twice daily to keep bile flowing. They were preparing to send Bob home yesterday and he a really scary episode of something called th rigours (extreme full body shaking) so they quickly reacessed his port and gave him meds to get it to stop. Apparently this is caused by bile getting loose in the system. It settled down pretty quickly and I did get to bring him home.
This all seeming like it is quickly progessing towards a bad outcome and I am pretty scared and nervous about the whole thing. At the same time I realize that Bob has been pretty constantly sick for 3 years and this disease is taking a terrible toll. All I can do is follow doctor's advice and try to keep his spirits up. I am able to take care of him and will continue to do so as long as he needs me.
Any advice from anyone would be appreciated. The move from treatment to hospice is truly worrying me. I really don't know how he will handle it. His oncologist will be conferring with all of his other doctors to determine whether it is benefical to continue treatment. I trust this Doctor very much, but it will still be hard to accept.
Sorry to have written a book
I dont get much chance to vent.