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.