On Blogging Bad News

Day nine. This has been a fairly rough interval. Although Susannah's white counts have been recovering fairly nicely, her liver and kidney function got worse, and then her liver function improved somewhat, and it's all been a roller-coaster ride of various numbers whose significance we can only interpret in broad outlines. But the overarching risk is veno-occlusive disease, a sort of clogged-liver situation that is a possible (and very serious) side effect of the treatment. The short-term reality is that Susannah has become a little confused due to her body's reduced ability to filter and balance her blood. Her confusion comes and goes, and—as some of had wryly predicted—Susannah with mild delirium still makes a great deal of sense.

In the last little while, we have a lot of reason for optimism. The nephrologists have decided against dialysis, at least for the moment, and have a drug they want to try, and her liver counts are improving, and she's very much cogent. But we have certainly been having a lot of grim thoughts and conversations: it feels like we are now at a contingency beyond simply treating the leukemia. (The nurses assure us that everyone goes through some version of this.)

So, qualified bad news: things could certainly be going better. I want to take this opportunity to talk about the format I'm delivering the bad news in. If this were 1910, I suppose it would be a telegraph. If this were 1810, I would be writing a series of letters, which I would send out to people who would copy the salient details, add their own comments, and send on. If this were 1510, I might be relaying events verbally to a friend or messenger, who would, again, re-broadcast them. In 2010, I keep a blog.

I'm very comfortable with blogging. I admire the openness of the format, and how raw it is. There is not much pretension, in this sphere of writing, to grand achievements. The act of writing and the act of publication are almost simultaneous, and the sometimes-toxic mystique of authorship is completely removed. In that, it more resembles correspondence than journalism, and Quakers have long made a practice of blurring those genres.

But I realize that many of you who read this are...ehhmmm...a little closer to 1810, in terms of your preferred modes of communication. And blogs, particularly about such private matters, must seem exhibitionistic, and, thus, voyeuristic as well. Which they undoubtedly are. This is a generational divide, and like many of those, at some level it is a trivial, aesthetic matter. But there is an anxiety within that divide that has some real mass to it, and it had to do with the changing sense of privacy: a shift that is quite relevant to medicine.

Electronic communication facilitates not only the erosion of desired privacy, such as one's medical records, but also facilitates our ability to share experiences. Twittering and sexting and posting one's every meal to Facebook are new phenomena, but they are not hardly the expression of new desires. The urge to bare one's soul in poetry—or, failing that, to bare one's breasts at Mardi Gras—is a pretty old and common one, and what we have seen in the last few years is simply an expanded technology for doing so. Moreover, the intrusion of corporate data aggregation into formerly private realms has created a generation of people who never had any real expectation of privacy. If they do not share their credit card number with Amazon, or post a picture of themselves partying to their MySpace page, they can rest assured that someone else will.

We can interpret all this in various ways. On the one hand, there is the Orwellian horror of the total surveillance society: Bentham's panopticon, as Susannah likes to describe it. (It is a bizarre irony that the isolation ward she is in here is designed precisely as a panopticon.) On the other hand, there is an interpretation of all this as a society that values honesty and full disclosure, and that ultimately has to re-evaluate normalcy in the light of this new evidence. Fifty years ago, cancer was a shameful and humiliating disease. People took great steps to prevent anyone from learning about it, and that veil of secrecy was stitched together with the concept of medical privacy. It was for a long difficult to even get accurate mortality statistics on cancers, because coroners would extend a fig leaf to the dead: natural causes, long illness. In thinking how far we have come from that era, we have to admit that our heightened medical knowledge of cancer, and our heightened social acceptance of cancer were both purchased with diminutions of how much privacy we might really expect.

I'm not entirely sanguine about this trade-off. I value personal privacy vastly more than Susannah does, which is handy, since she no longer has any. Centuries of research have yet to invent a hospital gown that covers your butt. But I also believe that frank disclosure is usually better for everyone's health and sanity.

Just before Susannah got here, the nurses tell us, there was a “California nudist” in the pod, who refused to wear a hospital gown. Our nurse confided: “We had to warn people. You'd go in there, and it would all just be swinging in the breeze.” Sometimes blogs feels like that, and it's not that I don't appreciate the discretion of clothing. But hospital gowns never covered much of anything, anyway.