Titrate to Comfort – it’s likely you’ve never heard those words before. What they mean, semantically, is “raise the dose of pain meds until the patient is comfortable.” Makes perfect sense. Just what you’d want, right? However, what it means emotionally is much more difficult to accept. Titrate to comfort. Those are the standing orders we have from Dr. Loukas.
Maggie is doing ok. Keeping food down continues to be a real challenge. There seems to be neither rhyme nor reason as to why. We take the nausea meds. And while she spends a majority of the time nauseated, she looses her lunch with little but a few seconds warning. It’s very strange. Sometimes it happens without any nausea. Belch, and there it is. We have our roles down pretty clearly at this point. She throws up while I get napkins and a glass of water. My job is to scratch her back while she wretches, place the napkins near her hands and NOT to flush the toilet. While you’d think (at least I did) new toilet water would be a good thing, the overwhelming smell of the little bleach cleaning disk that we put in the reservoir of the toilet to prevent the rings makes matters worse. So no flushy the toilet!
She sleeps a lot. We’ve wondered if it’s the pain killer that’s weighing her down or something else, something worse. She’s on 1.3 milligrams of dilaudid per hour now. A nurse told us stories of a patient that was getting some ridiculous amount per hour, like 850 milligrams per hour so, in comparison, what we got ain’t much. But that patient was, well, let’s just say that dose was for a limited time.
We now have this new home health thing going on. It’s all quite surreal. We have little bags of medicine that we keep in the fridge, bags like the ones that belong in the hospital, not in our fridge by the wilted lettuce. Maggie carries around this pump that’s connected to her port-a-cath, doling out the latest dose of pain killer. Ever so often it beeps, signaling that it’s out of fluid. That’s my cue to go to work. I wash my hands and go about changing out the bag, including disconnecting the old bag, injecting into her IV line some fluids (a simple 0.9% saline to flush the line out), connecting up the new bag to a new line, hooking it up to the pump, and then starting the whole program over again. All complete with the requisite wiping of the stinky alcohol wipes on everything, just to keep the baddies out of Maggie’s blood. It’s just bizarre.
She always perks up with people around. It wears her down but she enjoys the company. It’s tough because she doesn’t feel like having company but being around people just puts a sparkle in her eyes and revs up her spirit. It’s fascinating to watch, really. And oh how I love to see her come back to life. Maggie just loves people. It’s never been so obvious as it is now.
We ramped up the pain meds obviously because she was hurting again. But why? The list of suspects (along with my commentary) is:
* The tumors are growing – that’s bad, mmm-kay
* All the recent driving has jostled her innards about – sad
* She’s taken to whining more lately – unlikely
* Building up a tolerance to dilaudid – is this possible?
* The tumors are inflamed and are beginning to die – Zee Gold Star
Dr. Kurzrock said that she thought that it’d take about two weeks before the tumors would start to shrink. That puts us around next Monday, kind of. Maggie, of course, will know before any scans can tell us anything. So we have a plan. Next Monday we are going to lower the pain meds down just a little and see what happens. Maybe, just maybe, we won’t need this stupid pump any more soon. Thanksgiving, anyone?