September 1st, 2009:

It's been a scary and confusing past few days. Without my noticing it consciously, my pain management safety net quietly unraveled this past weekend and early part of this week. I use Fentanyl transmittal patches that release an opiate into my skin over a three day period. Then I replace them. I've used Fentanyl for the past eleven months and it is my basal pain medication; meaning, the basic drug that I use all the time with no changes in dosage. There's a change when the tumor creates more pain at which time we adjust the dosage higher. That last happened a few months ago when I went from 150 mgs to 300 mgs. Typically, I stabilize with the new levels very quickly and stay at that amount for several months. If I have sudden, unexpected discomfort, I use Morphine Sulphate for breakthrough medication. One or two of these pills kick in over a 20 to 30 minute period, and the pain goes away.

Early last week, I was having trouble walking to lunch which is four blocks from my office, then I felt better in the afternoon. Later in the week, I was hobbling in the morning so I started taking two morphines before going into work, and I started using a cab to get to work after decades of public transportation. On Friday of last week, I ended up taking three morphines in the morning, three in the evening followed by a lovely, spirited dinner with my friend Sarah and her daughter Lindsay who were visiting here from Santa Fe and Los Angeles. Saturday started with four morphines in the morning and more wonderful time with Sarah and Lindsay who came to see me in my apartment. Sunday, four morphines in the morning, and a movie with Philip and Geol followed by fine conversation with Philip.

After Philip left, I thought about shopping for groceries. Based on how my body felt, I realized that I could not comfortably walk to the store which is seven blocks away. I'd never had that realization: I could not get myself to the store under my own power. It was just too painful to walk. Then I thought about going into work the next morning: I could have the cab drop me off right in front of my high rise and get breakfast in the coffee shop downstairs rather than pick up a bagel a block away. So that's what I did. Four morphines before I left the apartment. Meanwhile all these opiates are causing me to be uncommonly thirsty. Dry mouth from about 4 a.m. on regardless of how much water I drink during the night. Once a work, I cannot get comfortable. I have been grateful for these past months over how my office chair and desk height are set at maximally comfortable levels. Not on Monday. So I take the four morphines that I now routinely carry with me. After half an hour, I am feeling no effect. And I have no more pain medication on me. So I write to Lisa, my primary care physician and explain the escalation in my self-medication as well as the fact that I am not getting relief.

Then, I head home to get take more medication because I am seriously hurting. The pain is 6 or 7 on a scale of 10. Once at home, I take three more morphines (total of eleven in the past five hours) and lay down for a nap. Nap is what I do for the rest of the afternoon; sleep, and groggy interludes in between. I do everything but drool and I feel very drugged. My last cognitive act of the day is to write to Lisa and explain that I've taken almost three times as much morphine as ever before but with diminishing results. In fact, the results were dreadful: no relief and totally doped out.

Early Tuesday morning, Lisa responds, "Why don't you come into the office today. As soon as possible." One of the amazingly responsive aspects of her practice is that you can usually get an appointment on the same day if you have an emergency. So at 11:30 this morning, I am in Lisa's office and she's explaining the difference between basal pain management and breakthrough pain management. "When I hear you say that you aren't getting relief from your breakthrough pain meds, I know that means that your basal pain meds have failed you." So, she suggests that I increase my Fentanyl patches by two. Rather than applying three patches, I will now wear five.

That's what I do. I come home and add two patches to my left side. Within a few hours, I can feel the results. I turned out to be a busy day. I had the assessment for radiology on my pelvic tumor early in the afternoon, and therapy at 4:00 p.m. By the time I left therapy, I could walk up Castro Street with an easy gait that was unimaginable on Sunday. The subject we explored in therapy was how can I listen to my body so that I hear the shift in medication needs? On the one hand, it's subtle and I've never been through this before. On the other hand going from one or two morphines every few days to four or more pills in the morning is a gross increase that I was most certainly aware of. And there's always the ultimate reminder: pain. If I'm in pain, a profound change has occurred. My ongoing task is to stay alert to the shifts that my body tells me about. As of this evening, I feel much, much improved. My spirits are up, I'm excited about a couple of projects that are knocking on my door, I look forward to returning phone calls and emails. Most important, I don't hurt as my basic reality. What a difference good diagnosis can make. Thank you Lisa! Thank you.

As for the radiation assessment, that will be the subject for tomorrow's entry. Basically, good news although the procedure is not without some caution. But, details to follow.