As most of you know, Dino has a new bauble, his SynchroMed II pain pump. Over the last four days, his doctor has readjusted it, slowly zeroing in on what will be the best pain management. Dr. Behravan's goal is to get him to a "3 or under" on the 1-to-10 pain level chart. I think Dino is probably very close to that now, but it's still a bit of a balancing act.
It feels to me like the pump may possibly need to be adjusted downward, primarily because Dino's spent the last day hallucinating quite a bit. Last night was one of those "no sleep" nights for both Dean and I because he spent the entire night talking to countless unknown characters, sometimes very loudly, sometimes singing, mostly unintelligible (except for when he told someone, a waitress I suppose, that "I'll have the scrambled eggs with bacon, but I'm not going to pay $1,100.00 for it!")
One of the bangles that accompanied the pain pump is a hand-held unit whereby Dino can give himself a "bolus" (an extra dose) every four hours if he needs it. He simply holds this device over the pump and presses several icons on a small computer screen to activate the bump-up. However, Dr. Behravan advised us today to hold off on the bolus for awhile because Dino appears to be addicted to the high levels of Dilaudid (I know, we don't like it either, but it goes with the territory) and thus it's time to begin a partial withdrawal down to a point that still regulates his pain but doesn't prompt hallucinations. So, the baubles and the bangles do serve their purpose, but nothing is perfect and we still have to get this one under control.
Regarding the bumps, we found ourselves saying shortly after his surgery (almost eight weeks ago) that things were probably going to get worse before they get better. I've kind of given up on that phrase and shifted into a different gear by saying that things aren't necessarily getting worse anymore - rather there's a continuing series of bumps that will be occuring for awhile. After all, we haven't started chemo yet (maybe by the end of this week), but we know that will be a bumpy road. And who knows what else is on the horizon.
I do know one thing, and maybe you can weigh in on this - we've got to get Dino mentally (and physically) back into the driver's seat. He's become accustomed to being waited on hand and foot (out of real necessity, of course), but he needs to take back some control for himself now. As an example, I ask him everyday if he wants to do a blog, but he passes on it. Same with having visitors, he doesn't want any. I know his world has gotten extremely focussed of late, but I think it's time to start the re-expansion process - time to get his juices flowing again. Let me know what you think.
Stay tuned for the chemo schedule. As soon as I hear, you'll hear. Love ya.