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I decided to go with Option 1: Stay the Course (see my post "Weighing the Options" for all the options). I had chemotherapy today, using the same FOLFIRI regimen that I have been using. Going to chemo feels like going to my own execution, except they don't kill me, just make me sick, and they are super-friendly and nice about it.
I am reminded of something that Christopher Hitchens, who is being treated for esophageal cancer, wrote in Vanity Fair: "I sometimes wish I were suffering in a good cause, or risking my life for the good of others, instead of just being a gravely endangered patient. Allow me to inform you, though, that when you sit in a room with a set of other finalists, and kindly people bring a huge transparent bag of poison and plug it into your arm, and you either read or don't read a book while the venom sack gradually empties itself into your system, the image of the ardent soldier or revolutionary is the very last one that will occur to you. You feel swamped with passivity and impotence: dissolving in powerlessness like a sugar lump in water." (http://www.vanityfair.com/culture/features/2010/09/hitchens-201009)
As usual, my mom kept me company at the infusion center, although I wasn't much company as I napped most of the time. I feel OK right now, but I usually feel the worst a few days after chemo. I wear a pump for the next two days that delivers a constant infusion of one of the chemo drugs (5FU) through a tube into the port installed in my chest. I have to be conscious of the fact that I am literally sweating out toxic chemicals (e.g., no sharing sheets or towels with the kids). I have an armamentarium of pills to ward off various side effects.
My partner Grace, my mom Kathy, and I met with my primary oncologist yesterday morning here in Bellingham and my second-opinion oncologist yesterday afternoon in Seattle. After talking to them, my choices seem clear to me. I will continue with FOLFIRI until either (a) it stops working (pain and CEA increase and/or cancer spreads to new organs, confirmed by PET/CT scan); or (b) I cannot tolerate the toxicity (I feel too sick and tired too much of the time for my quality of life to be acceptable to me).
If (a), I will try the other chemotherapy regimen approved for my condition, FOLFOX, until it also becomes ineffective or intolerable, and then try a clinical trial. If (b), I don't think I will bother with FOLFOX because the side effects are supposed to be similar but worse. So if I'm not tolerating FOLFIRI, there is little reason to think the toxicity of FOLFOX would be acceptable to me. So I would prefer to go straight to a clinical trial.
I mentioned clinical trials in my "Weighing the Options" post. There are a lot of clinical trials out there but unfortunately I am ineligible for most of them for one reason or another. The most promising one for which I might be eligible is at the National Cancer Institute (NCI) in Bethesda, MD. Going there for treatment, however, might interfere with my ability to resume teaching at my university in the spring quarter, which I am still hoping to do. It would also mean time spending away from my kids, although it would be an opportunity to see friends in the Washington, DC area. We'll see what happens.
Next time I'm thinking of writing about the lessons I've learned from living with terminal illness.
