Sunday, May 24, 2009

May 24th, 2009: What a pleasure to have a day where pain is minimal. I feel energetic about reading, going grocery shopping, cooking and generally enjoying being in my body. That is such a fine contrast to the drugged exhaustion of Friday and Saturday morning.

I have heard from several people that as I move into more acceptance of having a cancer that will not be cured, that this sets off a crisis of how to support me in this new definition of my health. For one thing, it’s scary to know that someone you care about is facing a mortal illness. There’s understandable confusion about what to say. There’s a fear of saying the wrong thing.

As a hospice caregiver, I can relate. I have certainly walked into a patient’s room and said something that was, in retrospect, inappropriate. One blunder occurred when I visited a resident at Maitri after a two week hiatus and during that time he had declined considerably. As I walked into his room, I was so shocked at his depleted self that I squeaked, “Hey! You look great!” Neither of us was deceived. My point here is not that I can make mistakes too; rather, not knowing what to say or saying the wrong thing is not the end of the world. Trying to cover up my shock did not end our relationship. It was an awkward and moment that was easily forgiven.

More importantly, what we can do for each other—I’ll do this for you and you can do this for me—is simply witness each other in the time remaining. Here’s how my friend Ellen expressed it in an email that arrived yesterday. “It's humbling to think how best to companion you in these difficult days. How can I know your reality? I can't, and there is no "right" way to be and no right thing to say--so it is a privilege to be called your witness. To witness, to be present in silence, to speak soul to soul is a proper offering. I treasure your love.”

So, let’s move forward with the understanding that my illness is challenging not just physically for me, but emotionally for all of us. And that my friendship with each of you has a stability that’s developed over time.

I’ve heard back from Dr. Jahan about many of the questions that I addressed to him earlier in the week. I had thought that we’d go over the answers during my visit next Friday, May 29th, but no, I get previews. Here’s what we may discuss depending on what the scans have to say. Regarding my questions about medical treatments, Dr. Jahan wrote:

“The next chemo option is somewhat easier that the inpatient Ifos/Dox. Each cycle is administered over a 2 week period. Week 1/day 1 you receive gemcitabine over a 90 min (or so) period, the nothing else until week 2/day 1 when you receive gemcitabine again over 90 min and docetaxel over 1 hr. Week 3 you rest at home, and then week 4 becomes the new week 1 for cycle 2. The chemo is generally well tolerated, fatigue is the main effect that you will feel, but your blood counts will be affected also. We would try to do 3 full cycles (each 3 weeks), and then recheck scans. We generally expect up to a 40% chance of seeing some kind of shrinkage, but it is by no means a sure thing."

Since I have been going into work every day, I’ll have to find out more about what “rest at home …” means to the typical patient.

Regarding pain management, he wrote: "You can increase your breakthrough morphine (2 pills or 30 mg every 2-4 hrs as needed), I plan to have you see the Symptom Management Group at UCSF Mount Zion (Dr. Rabow and his group—they’re wonderful). They can help fine tune your regime further, if that's ok with you.)"

Again, the next treatment options depend on the results of the scans. The pain management issues apply regardless of tumor growth.

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