Roger had a more restful day than many. The pain medicine seems to be getting closer to controlling the pain. The balancing act is controlling the pain but not whacking Roger out so much that he sleeps away the day. Today....he slept away a better part of the day. Dozing on and off or he would simply phase out in the midst of a conversation to stare at the TV. Sometimes his eyes would slowly roll back and *poof* he was asleep. Its hard to say if its entirely due to high doses of narcotics on board or if its exhaustion from constant pain catching up, or a combination thereof. Anyway, though I miss him when he sleeps away most of the day, I am soooooo relieved and happy he isn't wincing in pain.
The pain medicine will need continued tweaking until we find the right formula. We will be eventually going home with a pain pump which Roger will have to carry around with him 24/7. A small burden to offset a big ol' bunch of pain.
The game plan tomorrow is to leave the hospital. We will be transferring to a hospice facility to focus on pain control and getting Roger more comfortable so that we can truly get him some sort of quality of life. We will only be at the facility for 2-3 days to work with the doctors and nurses there who focus one 100% of their time on pain control. Once under control to a point where Roger, me, and the medical professionals all feel comfortable, then we will be released to go home. A hospice nurse will come to the house initially 3 times a week. We will be able to scale up or down the visits depending on our needs.
Hospice is a scary word. No, hospice is a terrifying, stop-your-heart, make-you-want-to-vomit word. Roger's oncologist had asked us to consider entering a hospice program over 2 months ago. We remained resistant and flat out said no. Immediately jumping to the horrible thoughts everyone thinks with hospice. His oncologist told us we needed to realize that hospice was born of the term hospitality and care and its true origination and purpose was care of others. He said hospice becomes another more focused more regular set of eyes and ears to watch the patient on the doctor's behalf and help the patient remain comfortable and pain free. Yah, yah yah, say what you want neither of us liked the word and wouldn't consider it. Now...in a world with Roger in constant excruciating pain, we now realize we need specialized care and assistance beyond all of the other medical professionals we have seen once a month or every 6 weeks. Hell, I would have cut my right arm off if I thought it would have helped him feel better. We remind ourselves just because you enter a hospice program doesn't mean you have to stay on it. Our doctor shared a story of one of his patients who had been on hospice but was taken off the program when his condition improved.
I will tell you the past several days rank up on the scale of some of the worst...and there have been a whole hell of a lot of bad days in the last three years since the cancer was first found. Its horrible having these conversations but you find the will, the focus, the energy to do it with the singular focus that this may help your loved one not feel pain. And, that's what I've done - try to keep the focus on that one goal - control and remove Roger's pain - and not let any other thoughts or hurt enter in to distract me/us from reaching our goal. Easy said. Not so easily done.
As is the case on so many of these recent posts, I'm signing off for now. Gotta grab that illusive sleep and Roger has just faded off into Ambien land.
Wishing the world were cancer-free. ~ a & r
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