Balancing Acts, Faith, and Denial

When I saw my oncologist last Thursday, he decided to take me off oxalyplatin, one of three chemo agents I've been getting, because my neuropathy--numbness in both feet and hands--has been getting significantly worse. In truth, it had occurred to me to cry "uncle" to him, not just because of the neuropathy, but because it's been taking me longer and longer to bounce back from each chemo treatment. But all I had to say was that I'd been dropping things (like half a can of Coke in a hospital elevator--what a mess!) and having a little trouble with zippers, and that was enough for him to decide to keep me on the leucovorin and 5FU, but take me off the oxalyplatin, which is what causes the neuropathy. The problem is that the neuropathy can become permanent, if it goes on too long. Not a pleasant prospect.

Of course, this is a two-edged sword, because the oxalyplatin has clearly been working on the tumors. "Well," Dr. Holen said, "we don't know that for sure. Maybe it's the leucovorin and 5 FU that's been working." Right. But if I have an oxalyplatin holiday, they can always start it up again if, or when, the tumors resume growing. I'll have a CT scan sometime in June, before I start the promised two-month vacation from all chemo.

Meanwhile, without the oxalyplatin, I bounced right back from chemo this week--no nausea, not much fatigue. It was a definite, and pleasant, change from the past two or three chemo infusions. So now I just have to have faith that the tumors have been beaten back enough that they'll lie low for a while. Or maybe what I have to do is just ignore, for now, the possibility that without the oxalyplatin, they'll grow back. We call this denial. Which is not to say it's a bad thing to do.

The experience mirrored, in a way, the balancing act involved in organizing Sunday's trip to Trinity UCC. People who had expressed interest in the trip started questioning the decision to go as soon as Rev. Wright's media exposure began. But the responses ranged from "don't go"--expressed quite well by Fred B in his comment on last week's blog post--to "I would be even more interested in the trip if Rev. Wright were going to be preaching." And I had already chartered the bus. So what to do? How to balance the "go" and "don't go" arguments?

Since I never intended the trip to be an endorsement of Rev. Wright or Barack Obama, much less Louis Farrakhan, but had been clear from the beginning that I wanted to bring people to Trinity to express support for the congregation itself, I decided to go ahead with the trip. I had to have faith that people would understand the rationale for the visit, whether or not they agreed with it--and to practice a little denial, too, about the likelihood that people wouldn't understand. I explained my motivation aned intent to everyone who asked--including a reporter who's doing a story about the trip in this week's Capital Times (now, sadly, a weekly rather than daily paper). No one canceled his or her reservation, and at the moment, it looks like at least 16 of the 29 seats on the bus will be full. Maybe more. I'll report on the experience next Monday.

Meanwhile, I came across a quotation in an article about the psychological challenges of living with chronic cancer that gives another perspective on balancing acts. The article (which was in an online journal called cureextra) quotes Steven Passik, a psychologist at Memorial Sloan-Kettering Cancer Center in New York. Passik points out that living with chronic cancer requires perspective-taking.and compartmentalizing. "Suddenly, you want to live every moment of every day. But this is just not possible. You can't live in the moment all of the time. You need to cultivate being involved in life with enough denial to put the cancer at arm's length."

Precisely. And it's good practice for all the balancing acts of life.