Jiggety-Jig

We are back home in South Hadley. The house is rather spare, as almost all of our stuff is sitting on the back porch awaiting decontamination. But this gives it a sort of new-apartment feeling that seems fitting to our new lives. For the next several months we will be living here, making regular trips back in to Dana Farber for outpatient stuff. Much more to write later on, but I wanted to let everyone who follows this blog know that we are back home in one piece.

She's Back!

[Susannah writes] Things people should know about me:

• I am wearing my eggplant hat, made by Marla Emery. I have dubbed it my engraftment hat; the green tendrils may become permanent. [She pauses, and comments: “People won't think my brain is back, will they?”]
• One of the most beautiful and kindest things that Ethan has ever said about me was that even when I wasn't really there, I was still nice to people. I am totally heartened that with my rationality stripped away, I was still trying to be kind to others. That's pretty cool.
• I need desperately to put one of those vacation-responders on my email. But what should it say? All suggestions will be considered.
• It is so lovely to be back in my own narrative present—that's what it feels like. My body is slowly starting to follow suit: I'm resuming eating, drinking, walking.
• I would like to give a shout out (a sing out?) for the most wonderful singing Valentine ever: to Becky Stratton and the amazing singing women of Middlebury. Their valentine brought me to tears, and I've made everyone listen to it. As with the eggplant hat, the nurses want to know if they can more where that came from.
• Finally, the chain of prayer on my wall now includes Britain Yearly Meeting and Cuba Yearly Meeting. Which is kind of terrifying. Thanks to Maria Armenia Yi, Marigold Best, Grandpa George Watson and others for the personal messages grounding those august bodies of prayer.

She's back!

Susannah has recovered from what seems to have been a steroid-related confusion. Meanwhile, all of her numbers are significantly improved, and we are currently looking at a discharge date of the 19th, though that might change. Nicole Martin and I have been super-cleaning the apartment in preparation.

This is not to say that we're entirely out of the woods. Susannah is still at high risk for infections, graft-vs.-host disease, and other complications, many of which can be very serious. And in fact, the deep confusion she experienced is not really a run-of-the-mill part of this treatment. So our relief at seeing her recover from that is kind of an emotional red herring. There is a lot of work yet to be done. All the same, it is an amazing thing to see someone harrow that space.

I don't like the idea of miracles. By that I mean, I don't like the idea of specific miracles, the “Lo, then God parted the SUVs and gave His faithful free on-street parking” type. It grates at my intellectual desire for explanations. It also gives me a kind of ethical qualm...if we see a bone marrow transplant as a miracle, aren't we snubbing the thousands of people who have devoted their lives to the work that makes it possible?

But I do believe in the general miracle; I am in awe of that. Death and stasis and entropy seem so compelling. Bad tends to go to worse. In contrast, the riot of living and thinking—more life, as the old blessing goes—feels almost like a sucker bet. If I'd never seen a human brain and someone showed me one, slimy tofu mushroom blob that it is, I wouldn't sit through the pitch. Obviously something like that couldn't do more than drip and ooze, let alone write a sonata. If they then told me that this brain thing had stopped working properly...well, forget it, there's no way it could recover. Right?

And yet the whole world is full of life and thought, and it persists tenaciously all the same. That is the miracle.

Grammar, Numbers, Emotions

Day thirteen.

Susannah has been in mental limbo for about a week now. The current medical narrative is that her delerium is mostly due to her serum sodium levels (as Anaïs says “Just salt? We're all that close to the other world?”). Another theory is that her liver and kidney issues have created a bottleneck of drugs that have psychoactive effects. And still another theory is that she is reacting badly to particular steroids. In any event, her cognitive state definitely seems to be linked to liver and kidney trouble, which, in turn, seems to be improving in the last 24 hours. The nephrologists have been talking abut dialysis for the last several days, but now they seemed to have decided it's not needed.

It's been morbidly fascinating to watch.

Initially, she went in and out of a very self-coherent otherworld, which she could describe in precise detail. Her contingency reality was also a hospital, but of a different kind: it worked on the soul as well as the body, and there was no clear distinction between patient and physician. It also seemed stocked with the culinary, aesthetic, and erotic possibilities that Brigham and Women's frankly is not. For about two days, she was capable of going back and forth to that place more or less consciously, and would become a little cross if the nurses worried about it. (At one point, she was discussing strawberries, and one of the nurses asked if she was feeling confused. “No,” she retorted, “I'm talking about my delusion of strawberries. I know there aren't any real strawberries.”) I am a lucid dreamer, mostly, and I have the impression from her descriptions that this phase of her delerium was a lot like lucid dreaming.

Subsequently, she was in Haiti, trying to help the children there. She drifted into Spanish for awhile, which I could follow, and then into French, which I was pleased to find I could still follow, though my French is very rusty. And since many of the staff speak either Spanish or French, this was all workable. But then she went into Russian, and we were all shut out.

For the last three or four days, though, there is no outward evidence that her delirium is in the form of some internally consistent, oneiric narrative. Instead, it seems to be just a flux of words and grammar and numbers. There is an underlying logic--she often makes her "don't patronize me" face if someone, well, patronizes her. But she changes case constantly, speaking of herself in the third person, or—more strangely—the second person. She talks about other people in the first person; she transposes past, present, and future.

Most of you probably are not aware of this, but I have spent a long time lately working on grammar-parsing algorithms. I cannot help but marvel at seeing the heuristic “subroutines” of this woman—whose mind I know so well, and who is so horrifically intelligent. It feels exploitative and inappropriate, but there it is.

My own heuristic subroutines, and those I see around me, are strangely familiar. Some years ago, Woody Dorsey hired me to work on a book about behavioral finance. In effect, we were interested in the empirical psychological research on why stock traders behave the way they behave, (as opposed to the neoliberal economic model of the same.) As I mentioned earlier, some of those studies are literally based on psychological reactions to medical events...colonoscopies and leg amputations, I think.

Like stock traders, the families of cancer patients are presented with a series of numbers whose meaning they often are not really qualified to interpret. And so we assign normative values: we believe in the virtue of a lower creatinine count, and a higher poly- count, even though we have only the vaguest idea of what these things really are: I'm not even sure what “poly-” is short for, in this instance. More to the point, we have no idea whether an 0.1 drop in creatinine over 12 hours is insignificant or earth-shattering or just normal fluctuation. We don't even know what units “0.1” is expressed in, and yet we have strong emotional reactions to this information. Based on the variety of our temperments and levels of exhaustion, we tend to read all these numbers as optimistic or pessimistic symbols, which, of course, they are not. And for every pair of numbers, we believe we have found a pattern, a trend line.

There is a strong parallel with stock traders talking about, say, gamma, vega, or charm. Or, again, with someone tuning in a station on a shortwave radio dial, who has no idea what all these meters and kiloHertzes are about. But it's so wonderful to hear a signal coming back through out of the static...

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.

How is she doing?

Day seven.

Many people have asked me how Susannah is doing since transplant. It is a complicated question to answer. Even without sickness or some other known trauma being involved, there is something slippery about the everyday pulse-checking question “how are you doing?” It exists in almost every language, and is a staple of good manners everywhere, and part of those same good manners is not to answer it in any meaningful way. In English we have come up with the wonderful phrase “OK,” an acronym with no etymology and hardly any actual meaning; an affirmation without much commitment...whatever did we use beforehand?

Frequently, when people who know that Susannah is in the hospital ask me how she is doing, I say that she is doing “OK.” (Sometimes I pause for a moment first to convey that this is a considered response.) And I might mean two different things by that. I might mean that she is within the nominal parameters of the treatment for her condition. That's true, insofar as I can tell. I might mean that she is mentally, emotionally, and spiritually solid, despite a great deal of physical insult. That's true too.

But it would also be true to say that she is feeling awful. She has a whole litany of gruesome symptoms. These are both side effects and complications from the medicine and also the resurgence of whatever long-vanquished bacteria and viruses have been floating around in her body, perhaps for many years. (Susannah quips, while spiking a fever: “I've been oppressing them, but now they're liberated again.”)

These are not just nuances of language; they are a realm of subjectivity which medicine has to engage with, and often fumbles. Most hospitals use some variation(s) of an eleven-point subjective pain scale, such as the FLACC or the Wong-Baker scale. These scales have been around for awhile, and are distant cousins of subjective-well-being scales, with some research crossover in fields like behavioral economics. But they have really come into force in hospital settings since a 1998-2001 legal case. A Dr. Chin in California was successfully sued for abuse (not malpractice) after under-treating a patient's pain. Since then, pain scales have become a liability concern as well as a therapeutic one, and are often tracked as the “fifth vital sign,” an awkward grouping with four precise, objective statistics.

Among the problems with the extant pain scales is that they are pegged on an imaginary: a pain of 10 is the “worst pain possible,” something that most of—perhaps all of us—cannot really claim to experience. Most patients admitted to a hospital for anything that causes them distress will rate their pain as seven or higher, which allows very little room to communicate further increases in discomfort. (And, indeed, many patients may feel that over-reporting their pain will get them faster or better relief.)

Susannah had noticed these problems herself, reporting an infarcted spleen (which fits Cheney's proposed definition for torturing someone “too much”) as anywhere from a four to an eight, depending not so much on how she felt, but how large she envisioned the pain scale to be, and how much she second-guessed the doctor's imagination of the same scale, etc.

So when we came to Dana Farber / Brigham, being geeks, we started our own project. This scale is chained: each report is defined as a percentage move from the previous report. (Note that the first data point here was an exceptionally good day for both of us, complete with a visit to an amazing coral reef being grown inside a shed in the hood in Holyoke. So “normal” is not at the top of the scale, but somewhere partway down.

This system has certain advantages. People can make more definitive comparative statements (“I feel twice as bad as last night”) than absolute ones (“I feel two-thirds of the way to the worst possible feeling.”) But there are some remaining problems with this scale, some of which can be fixed, others not. In any event, Susannah's reports on this scale very closely match the patterns described by other patients who have gone through this process. If they continue to do so, she will be at a subjective nadir in about a week, and then slowly begin to climb back towards OK.