An Unwanted Journey: Day 1095 - At Home Pain Crisis

We had so many medical people in to see us yesterday, as well as a visit from a group of colleagues from work, deliveries of medicines and a fruit basket from dear friends, and so on. A lot of activity. I should have anticipated that there would be consequences.

This morning at 5:00 am, I awoke from a lengthy sleep in great discomfort, with slight nausea, and the need to visit the washroom. Doing so was the most difficult yet, with a lingering inability to get my breath back and stabbing pains throughout both my legs. In fact, I think there may be a clot in the right leg to match the large one in the left leg.

We made the emergency call to CALL NURSE from Paramed and asked about pain medications, thinking that since the kit had arrived from the pharmacy yesterday afternoon, we would have the supplies ready for the nurse to give me an injection of some kind. When she called back, we decided instead on repeating the dosage of Percoset from the 3:00 am administration of pain killers. It worked. I slept until 7:00 am and was then able to move with less pain into a seated position on the side of the bed.

But doing this has some implications and immediate side effects. The auditory hallucinations are back again with a vengeance and we will have to watch closely the upper daily dosage limit on the second component - acetaminophen (significant liver damage). Evidently, however, according to the pain specialist doctor who visited us yesterday, we can get a version of the drug without acetaminophen - in other words, with just oxycodone. This should allow us to apply a breakthrough administration of the pain killer as needed.

The clots and the pain crises have reinforced a sobering message from the doctor from yesterday. Although he, like virtually all other medical team members, is very reluctant to talk about how much time is available to me, he made it clear that he thinks we are talking about a matter of weeks rather than months or days. In the early morning, as I awoke less that two hours after administering my regularly scheduled pain medication at 3:00 am, I felt for the first time like time itself was slipping away. To put it simply, unless it gets better, my feeling was that less time would be merciful.

But now (at 8:00 am), with the pain mercifully reduced, there is a corresponding elevation of spirits and hope.

For my friends and family, the experience of the next few weeks will necessarily bring pain into their lives too. It can't be helped. Merely seeing me will remind them of the brevity of life, of other friends and family who have previously battled disease, of their own helplessness... My hope is that there will also be enough laughter, courage, and inspiration to provide them with resources for similar situations that arise in their future. We all need real-life exemplars that come to mind immediately when dealing with medical crises.

Being sick doesn't mean that I've been transformed into a fount of wisdom and courage, but I do fervently hope that my example helps a few individuals deal with their own crises.