Tuesday, September 15, 2009

big day tomorrow

Once again, a big day tomorrow, as we'll be seeing Dr. Fine (or one of his teammates/team members) tomorrow morning at 9AM. The first part of the consultation will be an interpretation of Mom's MRI, which was taken this past Friday. I imagine the second part will be an explanation of where we go-- or don't go-- from here. There are some painful questions to face, such as how aggressively to pursue the cancer if we know that harsh treatment will mean a severe reduction in Mom's quality of life. Will such treatment be worth the pain of watching Mom in misery? Even the use of Avastin, only recently recognized as an official second-line therapy for GBM, is associated with some horrible risks, such as internal hemorrhaging. It was that risk, in particular, that made us decide not to have Mom's bone flap put back in.

Beyond the question of aggressive treatment is the question of which therapy to choose from. I hope that, through my writing, I've given people some idea of the dizzying variety of treatments currently available for GBM patients. Of course, we can't choose all of them, and none of them is a cure-- that was established at the outset. Although it's a hateful phrase to use, GBM is considered a "dead on diagnosis" disease. As I've said, the only possible positive outcome would be for Mom to somehow live long enough to pass away from old age. As far as ridding herself of cancer goes... there's no chance of that.

Part of life is about learning to confront one's limits and the inevitability of circumstances beyond one's control. This evening during dinner, we saw a clip of the late Patrick Swayze's recent interview with Barbara Walters. At one point, the startlingly gaunt Swayze told Walters that he had accepted the constraints of his disease, i.e., he understood that he had no chance of being free of his pancreatic cancer. He did, however, say that he now lived with an "openness to miracles." An admirable sentiment, but one that needs to be examined, since it's subject to interpretation.

Personally, I'm not big on miracles, if by "miracle" we mean something magical, something that defies the normal course of nature. My own idea of the miraculous is best summed up by a quote from the movie "Bruce Almighty," in which God, as portrayed by Morgan Freeman, says:

Parting your soup is not a miracle, Bruce: it's a magic trick. A single mom who's working two jobs, and still finds time to take her son to soccer practice, that's a miracle. A teenager who says "no" to drugs and "yes" to an education, that's a miracle.

I've spent a lot of time on this blog giving responses to an argument that has been going on behind the scenes, one that comes up periodically when we have visitors, some of whom are in denial about Mom's condition, and who retreat to magical notions of religion when the going gets tough. The problem, though, is that magic is inconsistent and unreliable. You can't base an argument for the power of magic on anecdotes and random, isolated cases. The logic never works. Consider a freak accident: if you're the sole survivor of a plane crash that killed 299 other people, is that a miracle? The magically inclined will think it is, conveniently forgetting the 299 people who weren't similarly spared. The crash survivor who claims he was miraculously saved will have a lot of explaining to do to all those other bereaved families. Personally, I'd say he was just lucky.

To be sure, this cuts both ways: magical thinking focuses not only on the "miraculously fortunate," but also on the "miraculously unfortunate," e.g., someone who is struck by a disease while millions of others are spared. From the magical perspective, it might seem that my mother is being punished for her (or for someone's) sins. Bunk, I say: she's just unlucky, a fact reinforced by current science, since doctors still have little notion of what causes GBM. The cancer's not related to one's personal habits, nor is it caused by any obvious genetic defect (which would make its occurrence more predictable). Because every GBM is composed of tissue from the patient's own brain, it's best thought of as one of those instances in which the body rebels against itself. Bringing magic and superstition into such a crisis situation only serves to confuse things.

However, if we think of miracles not in the primitive magical sense, but in the mundane, unexciting sense quoted above, we can look around us and take delight in the many ways, both humble and grandiose, by which people strive against entropy. It would, for example, be easier for the members of my congregation, or for members of Mom's Korean women's society, or for Mom's circle of friends, to hear the news about Mom's cancer and say "What a pity," then just sit there. But that's not what happened. Instead, people have fought that natural inclination to laziness and entropy, mustering the will to perform some truly extraordinary acts of kindness and charity for us.*

Every visit, then, can be seen as a miracle. Every time food arrives for us, that's a miracle. Every card is a miracle. Every hug, every kiss, every moment that someone holds Mom's hand-- those are all miracles. As the God of "Bruce Almighty" warns us, "You keep looking up." People keep seeking solutions from on high, an instinct that reveals our primitive and misguided desire to see and experience magic. But the solutions are actually to be found down here-- not at the gelid mountaintop, which has little bearing on our existence, but in the valley of the ordinary, where we all are at every moment. In his 1970s classic Zen and the Art of Motorcycle Maintenance, Robert Pirsig says, "There's no Zen on mountaintops." He and I are talking about the same human problem. Believing in magic is like pinning your hopes on fog.

If Patrick Swayze was open to the sort of everyday, mundane miracles I'm writing about here, then he and I are in agreement. If he was, on the other hand, holding out hope for some sort divine deliverance, well... he has his answer. Me, I suspect that Swayze was a hard-driving, practical type, not the sort of person to sit around waiting for angelic hierophanies. In the end, I don't doubt that he faced death bravely and calmly, with his family by his side. And that's as it should be.

So we'll meet with the docs tomorrow. I'm realistic: we can be sure that Mom's prognosis won't have magically changed. But we might learn something about life-extension or, at the very least, about advances in palliative treatment. I'll be curious to find out whether the radiotherapy actually did anything for Mom. Whatever happens, tomorrow will be an important day, and whether we come out reassured or even grimmer than before, we'll at least know more.

*Dr. M. Scott Peck, in his The Road Less Traveled, cites laziness as the basic human problem. Entropy is expressed as laziness in human beings. Spiritual growth-- the fight against entropy-- is a matter of effort and work. It involves striving, getting off one's ass and doing something instead of taking the easy path and doing nothing. For Peck, love is not a mere feeling. Feelings come and go in a mercurial, irregularly tidal manner; true love is action. Love is what's visible when an angry spouse cooks dinner despite his or her anger, or when a parent upset with a child's behavior nevertheless stays by that child and encourages him to study harder or behave better. Love is what we see when people too tired to move or think still somehow dredge up the energy to care for each other. Paul talked in I Corinthians 13 about how love is patient and kind, and that's all true. But love is also the gritty (the nitty-gritty) mortar that keeps the larger edifice standing.

UPDATE, 9/16/09, 2:49AM: THIS PAGE links to a wealth of information about therapies at NCI and elsewhere.


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