Monday, December 12, 2005

December 7, 2005 - The Cancer Underground

This evening, Claire and I go to dinner at the home of Don and Charlotte, members of our church. Don is in his 70s and has NHL, of a different variety than my own. Like David, he received stem-cell replacement therapy (at Hackensack Hospital rather than Sloan-Kettering), after his chemotherapy failed to turn back the disease’s assault, and is now in remission. Don had phoned me immediately upon hearing of my diagnosis, and insisted that we come for dinner. He told me he and Charlotte had much they wanted to share with us.

We feel enfolded by warmth and caring. As David did the day before, Don also shares valuable insights about coping with the disease – and, although some of what he says parallels things David told me, it is immensely helpful for Claire to hear all of it. Charlotte describes the predictable cycles of chemotherapy, from her viewpoint as the wife of a patient: a daylong treatment, followed by a week of weakness, then a week of even more severe weakness, then finally a week of relative normality, before the whole cycle begins over again. Charlotte has a name for that third week: "Party Week," she calls it. For it is only in that week that the drugs’ declining suppression of the immune system allows for normal coming and going in public places. I have a fleeting vision of a roomful of hairless people with party hats, dancing around and sounding New Year’s noisemakers.

I wonder how closely my experience with chemo will parallel Don’s – and how that will affect my ministry at the church. So much of what I do – in leadership, in teaching, in preaching – is planned out weeks in advance. Robin and I will have to find some ways to adapt quickly to my down times during the four or five months of my treatments, especially as those down times arrive unexpectedly.

At one point, Don opens his shirt and shows us his porta-cath. It is a pronounced bump on the skin, about the size of a walnut – not the clunky plastic apparatus I had expected (the porta-caths I’ve previously seen have been of a different type, apparently). It looks more like a part of him than what I had seen before. I can see why Dr. Lerner said patients can swim with this sort of device, if they want to. Seeing the thing makes it appear less intimidating.

Sitting there with Don and Charlotte, and recalling my conversation with David of the day before, it feels almost like we’ve made contact with some sort of secret society. We’ve joined the Cancer Underground. I now have the dubious distinction of having been recommended for membership in this highly selective group. Don and Charlotte’s home feels like some kind of safe house. The information they share with us is only for the initiated. It is only when you have this disease that you are ready to hear it.

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