May 23rd, 2009: The past couple of days have been dominated by the two issues that most mangle my health now: poor pain management and fatigue. On Thursday, I met my friend Ellen for a visit at the Asian Art Museum. We began at the South Asian galleries which start the circuit through the museum, but by the time we had passed through the Indonesian and Tibetan rooms and were into the Chinese jade gallery and the old bronzes, I was starting to feel a level of pain that just wouldn’t go away. I could continue to look at the treasures, but I noticed that my conversational skills were reduced to “Really?” “That’s wonderful” “How exciting” and my old standby: “I bet.” I just couldn’t add to the dialogue.

Then, my capacity to enjoy the art work started to plummet. By the time we were in the monumental Chinese statuary gallery, I could barely look at the artwork. I told Ellen that I was in a lot of pain and had to fast forward our tour. She understood. On the way down to the museum restaurant for lunch, we stopped to look at some porcelain in lucite cases flanking the grand staircase. At the far end of the open gallery surrounding the stairs, we found a comfy couch and sat down. As I relaxed into the cushions, the pain surged and I started to weep. I have been in the new Asian museum thirty or forty times, but never with such overwhelming pain. In that moment, surrounded by beautiful architecture and held by a close friend, I felt helpless, sad to be so diminished and totally overwhelmed. Those moments on that couch defined for me how far my illness has taken me into out-of-control moments. Lunch was a rushed event for me. In spite of my feeling that all time with Ellen is precious, I desperately wanted to be home, in bed, asleep. So that’s what I did as quickly as possible.

It surprised me that when I did get home, and got into bed and slept my sleep was not the usual hour long nap. I slept for several hours and had to force myself to get up and have dinner. It felt like one of the days following my discharge from chemo: my two dominant sensations were nausea and exhaustion. For the past few months, fatigue has been a daily and manageable event: when I’m tired, I nap, usually in the afternoon. But nausea has not been a part of my life since mid-January.

Friday, I awoke groggy and stupefied after an excess of sleep. Staying in bed was not an option because I was scheduled to get my latest CT scans at UCSF. I had asked to be scanned five weeks earlier than planned, because I felt physically uncomfortable. I didn’t want to miss getting some actual pictures of the tumor and measures of it’s growth.

Let me say that through the past several weeks when I have been uncomfortable and have felt like my tumor was growing, I haven’t REALLY known if that is the case or not. As I’ve remarked before, back at the end of March when I was scanned, I knew that the tumor had grown and I was wrong. It had not grown at all. But what I experience in my body is a strong sense that the cancer is getting larger because the pressure from the tumor hurts more. That daily, physical pain makes me anxious. My anxiety causes me to try to assess what’s going on and what I can do to manage that. I am looking forward to seeing Dr. Jahan next Friday, May 29th for the best of reasons: he will read the scans and we can plan the next steps in my treatment.

After going on and on about pain, not knowing, etc. let me say that well over half of my conscious time I am comfortable and not aware of the tumor. That’s important: I am not aware of pain most of the time. Additionally, I have been lucid through most of my illness. I can analyze computer applications at work and propose effective solutions to problems. I continue to read a lot—reasonably dense magazines as well as books. I can retain my concentration and remember what I’ve read.

Recently, however, I have largely lost my ability to meditate. This started in earnest about a month ago. Remember the healing center where I would lie on the warm marble slab and receive healing visits from animal, vegetable and mineral spirits? I have lost the ability to get into my healing center. I just can’t keep my awareness focused. I forget where I am, and my concentration doesn’t move forward. It reminds me of when I couldn’t listen to music last October and November. Music was so irritating and confusing that I stopped listening. Then, over a period of a couple or three weeks, my ability to listen and enjoy returned full force. Now, my hearing feels as rich and nuanced as ever. I hope that my ability to meditate returns as well.

In the past couple of weeks, I had asked my primary care physician about how to manage intermittent pain, and she suggested trying oxycodon. On the way to the scans, I picked up my prescription for oxy to use for pain breakthrough on an as-needed basis. After the scans were over and I had left work, I returned home and took my first oxycodon pill to relieve the pain I was feeling. From the moment I swallowed the oxycodon until mid-morning the next day, I was in an altered state of too-much-drugs. Mostly, I slept. But as my sleep continued across the hours of the evening and night, I also became groggy with sleep. When I awoke this morning, I could not get out of bed. Fortunately, my friend Philp had called me twice during the week to figure out when we could get together. I called him back and we agreed to visit this afternoon. With a visitor coming over, I knew that I’d have to get up. So I did. The rest of today—it’s now 4:00 in the afternoon—has been OK. No pain. No nausea. No exhaustion. I will take a nap in a few minutes, but I have felt lucid and pain free for most of the day.

I have to say, this is a demanding time for me. I don’t really know what’s going on inside my body. One of my biggest resources—meditating—has gone into recess. I am fearful that my tumor is growing and that I will die from this illness. All this interspersed with normal life where I look good, have a nice head of curly hair, have to shave daily again, can take on new projects at work and do well, am eagerly listening to new Handel operas (as well as enjoying the musical repertory of my last forty-five years), look forward to seeing friends for coffee, lunch and/or dinner, and generally continue the life that I have built for myself here in San Francisco. It’s all of the above—apprehension and functional behavior—every day.