This modulation of pain medication isn't easy. This afternoon, there was yet another crisis, coming a few hours after meetings with both the CCAC case management coordinator and the Paramed nurse.
This one scared me, my wife and my youngest son. From an estimate of about a 2 on the pain scale when the crisis started at 1:00 pm, and even with rescheduling the administration of Percoset twice (3 early or extra capsules) until 3:45 pm when my breathing started to drift back into normal territory, I had spiked to 8 at least twice, maybe 3 times.
My temperature was normal, but I had the cold shakes and could barely catch my breath at all. We had to call the pain management emergency number and get the on-call doctor to walk through the symptoms, the timing, the elimination of more serious symptoms, and the ordering of another prescription for Oxycodone without the acetaminophen. My wife is walking inside the front door now with the medication which I can take every hour until we've got this monster chained to the wall.
I'm exhausted and more than a little skeptical about progress, hopeful (always), but waiting for the evidence of better times ahead.
The experience of unbearable pain requires superlatives, something which writers are reluctant to do. Even now, as I've just described the afternoon's experience to my eldest son, I am reluctant to to say things like, "the worst pain crisis yet", because to do so I would have to have a perfect memory of all those other episodes. Perfect memory of pain doesn't exist, as far as I can tell, something for which I am grateful.
One highlight of the interview this morning was when the CCAC case manager asked me if I had any goals. I laughed and told her the story of when I entered my hospital room in the in-patient oncology unit on 10-Nov-2008. There was a white board by my bed with areas to write down names of the doctor, nurse, CCAC worker, social worker etc. And below that was another area for Goals. At the time, my wife and I laughed and I asked, "So I'm supposed to have goals now too?"
We talked a little further until I realized she was really asking about simple things to set as objectives, things like being able to get into the car for a ride around the neighbourhood, or to use my walker to walk the circuit from family room to hallway to dining room to kitchen and back again. Those are goals that I think I can manage right now. We'll start with taking 2-5 steps away from the bed holding on to the walker, turn around, and then walk back to the bed.
One of my perennial problems in life is having too many and too elevated goals. When I've set more appropriate goals (say, learning to chord and play the six-string guitar so that I could sing simple folk songs unaccompanied by anyone else), I've almost always done very well. Cancer is teaching me the same lesson all over again.
Tomorrow's goals are simple:
- complete the day without another pain crisis
- ensure I can prioritize visits from family and friends and make it possible for those travelling to see me to actually get a chance to do so without jeopardizing my health
- schedule a time when my wife can get out with friends without overly worrying about me
- write a blog
That's it. I hope my CCAC case manager would approve :>)