An Unwanted Journey: Day 1097 - Pain and Timing Are Critical

It was only around 2:00 pm this afternoon that the 12.5 mcg dosage fentanyl patch arrived at the pharmacy. We need this to establish a baseline of pain medication. It will be 12 to 24 hours before I begin to feel any symptom relief from the patch. In the meantime, and even afterwards, I will continue the Endocet for break-through medication.

Anything that helps me avoid the literal ups and downs, the growing number of leg and buttock cramps, the vain attempts to coordinate use of the commode with ideal pain relief cycles - that's highest priority for me these days. It's not working well. In fact, later this afternoon, pain spiked to 8 with a good 90 minutes required after that just to relax back down to a 3.

Did I mention that I am absolutely impossible to be around when pain spikes that high? Don't ask me any questions. Don't make any suggestions. I will eventually become human again.

I don't think it's possible for me to overemphasize the importance of pain management. Without low pain levels, I can't concentrate on anything significant. I cannot respond to email, Facebook notes, blog comments or even telephone conversations beyond 5 minutes duration. Even with pain medication that is starting to work to bring levels down to 1, 2 or 3, I will have days of drowsiness and lethargy. Blog entries and the cogency of what I write will undoubtedly suffer.

This upcoming week will be busy with visitors. We've cancelled all other off-site medical visits (they simply don't make a lot of sense anymore). We've also cancelled Red Cross visits until an undetermined date in the future when my wife feels she can't cope with my personal care. Right now she can handle caring for me herself.

My daily ambitions are highly curtailed. If I can help with online banking a little, if I can prepare a list of contact names and phone numbers, if I can do some research about end-of-life issues that aren't already fully organized - that's what I'll do.

I do ask for some patience from those who are writing to me personally and requesting I contact them for an appropriate time for a visit. Please remember that making that request puts the onus back on me - I may forget. The fewer requests you make of me and my wife, the more likely it is that we will be able to manage them.

Here's some further recommendations. If you'd like to visit, decide on a date and time and alternatives and make a specific request. If you'd like to call, go ahead realizing that I may not have energy for as long a conversation as either of us might wish. If you want to do something for me or my family, decide what it is, ask my wife if it's OK and then do it. But don't ask me to figure it out for you - thanks. It is the giver, not the gift that matters right now...believe me.

Thank you again for all your thoughts, prayers and support. I can't keep up, but I do appreciate what you are doing.