On vacation (Part I)

Christiaan van Vuuren, now known as “Fully Sick,” has been quarantined in an Australian hospital for some time with MDR tuberculosis. After going completely stir-crazy, he began to make a series of rap videos about his situation, filming them (by necessity) in his isolation room and editing them on his laptop. They've gained a sort of cult following.

There is a story by Anton Chekov, The Bet, in which a lawyer volunteers to be imprisoned for 15 years in exchange for two million pounds. His jailer assumes that he will renege on this agreement and forfeit the money. Meanwhile, the lawyer is provided with food, books, wine, tobacco, and a piano. Over the years, he becomes proficient in many languages and a wide range of scholarship, while his jailer falls into debt and realizes he will be unable to pay the two million. Hilarity ensues.

Susannah is now almost one hundred days post-transplant, and some of the more onerous restrictions on her own “imprisonment” are being lifted. She can eat fresh fruit and vegetables again, as well as baked goods, and certain kinds of restaurant food. (Though she can't go inside the restaurants.) Meanwhile, modernity has provided us with a set of luxuries that Chekov's prisoner could never have envisioned. Laptops and wifi and kindles and Hulu and JSTOR and Netflix and so forth provide an endless range of resources, and an even more endless range of distractions. We don't have a piano, but—like Fully Sick—we have music.

And while Susannah's rap videos have not yet become viral phenomena on the internet, she hasn't entirely been in a coma, either. Yesterday evening, she turned in the final draft of her dissertation, which she's been busying herself with for the last few months. She has also been assisting B Amore with translating pieces for an upcoming book of art by migrant workers in Vermont, which just debuted in Middlebury. And she's back to grading papers, working through a logjam of email, and so on.

I have been cooking my way through Nina Simond's Classic Chinese Cuisine, and to a lesser extent Julia Child. I've also been working on my pet programming project, and on the long-overdue analysis of two lovely databases that have survived my string of laptop failures. And I've just been reading Báez's A Universal History of the Destruction of Books, which I've written about on a different blog.

Mostly, though, we read and watch television or movies via DVD and Hulu. Anticipating this, we had had asked people for suggestions as to what we should watch. (I have never lived in a house with a television, and Susannah somehow seems to have seen even less TV than I have.) This turned out to be a more complex process than I'd expect. People read (and consume other media) for many reasons, including such prestigious goals as scholarship or personal enlightenment or inspiration. Most media is consumed for “mere” entertainment value, and it makes no challenges to the native assumptions of its genre: nothing that might jostle the reader out of a comforting routine.

But it's not at all clear where reading-as-therapy falls in this continuum. I don't mean by this the reading one does to negotiate some acute emotional crisis: for me that would be Blake or Whitman, and for Susannah Rumi or Dickinson: all of them very much “high culture” authors. Rather, I'm interested in the reading and TV-watching and movie-viewing that serves as a balm rather than a medication: the mental equivalent of the invalid's diet of rice and toast.

The thing I must love about The Bet, though it is rather incidental to the plot, is Chekov's description of an auto-didact's progression through knowledge, unhindered (and unsupported) by outside structure. He spends a year reading lowbrow novels and playing the piano, before getting down to work on a self-imposed curriculum that continues to evolve. Grace Llewellyn describes essentially this phenomenon, which she calls “the vacation.” Auto-didacts leave school in disgust, and then spend weeks or months doing mindless, unstructured things—typically absorbing low-culture media: television or comic books, or Chekov's “sensational and fantastic stories,” or YouTube videos about TB. Only afterwards do they feel comfortable imposing new structures on themselves. Llewellyn is writing about teenagers making the decision to home-school (“unschool”), but clearly the point is germane for college students and graduate students as well. If schools could teach students to create their own structures of motivation, and feel comfortable working in those, there would be no such thing as postdocs.

And I think that her point can be extended or generalized to the recovery of autonomy from many sorts of external structure, including—in our case—hospitalization. There seem to be some ubiquitous patterns to these vacations: if they are interrupted or minimized, for instance, they tend to get prolonged, sometimes indefinitely. And the media that is the focus of the vacation is almost always “low culture,” which is to say, the kind of stuff that will exasperate one's elders. Although of course, by some inevitable cultural magic, each generation's lowbrow media becomes the highbrow media of their grandchildren. Hence Boccacio's endless jokes about nuns having sex now sit at the high table of literature. In all events, there seems to be a vital role for this sort of media. Toast isn't medicinal, nor is it high cuisine, and you could certainly eat far too much of the stuff. But toast has its place. It is, as they say, part of this nutritious breakfast.

By now you will note that I haven't actually mentioned what we are reading and watching. I'm afraid this is typical; my own favored literary mode is the digression. You will have to wait a few days for further details.

Drugs

This is Susannah's current daily drug regimen, which is at the lowest ebb it's been at since we left the hospital. The stuff in the spoon is Mepron (Atovaquone), which tastes so bad that the protocol is to hold your nose while swallowing it. It also stains everything it touches bright yellow. On many surfaces, this stain can't be removed. Basically, it's paint. Above it there are eyedrops, though Susannah's eye has made a splendid recovery from what the ophthalmologists are now willing to tell us was the largest corneal abrasion they had ever seen.

The purple dinosaur above the Mepron is also named Mepron, or Mep. This was an Easter present from Jean: bopped on the head, Mep emits a sort of agonized howl, and then lays an egg, or perhaps a coprolith, in the waiting basket. Susannah has taken to ritually smacking this dinosaur whenever she objects to her medications. Christoper has added to the routine with the “dancing flower” on the right. The flower has a microphone which picks up sounds, and dances a sort of twist in time to the ambient noise level. So when Mepron howls, the flower goes wild. These are among the lesser-known advantages of modern technology in the ancient field of pharmacology.

The eight syringes are Heparin on the left, and saline solution on the right. Susannah still has one of the two Hickman catheters leading into her heart, which is an extremely handy way to get drugs in or blood in or out. (In the case of ECP, it gets run in both directions, moving blood out and then back in.) I would estimate that these catheters have spared her about 300 pokes with a needle so far. But they can potentially clot, and so have to be flushed with saline and anticoagulant meds every twelve hours.

The pills in between are a grab bag of steroids, antibiotics, anti-fungals, anti-virals, immuno-supressants, and vitamins. Please note the valganciclovir and mycophenolate in the lower left: the pills are almost identical in shape, size, and color.

This brings me to my thought for the day. We keep being told that we are smart people, and we have good memories, and good vision at close range. And yet we find it a constant challenge to manage these medications, even now: things were much more complex a month ago. For instance, Susannah got prescribed _______ for a sinus infection, which the insurance company rejected and replaced with ciprofloxacin. Cipro has absorption issues in the presence of magnesium and calcium. In big bold letters, we were warned that she should not to take Cipro within two hours of taking magnesium, or take magnesium within six hours of taking Cipro. But she was supposed to take both Cipro and magnesium twice daily.

Now, that's certainly a solvable problem: she could take the magnesium at 8 AM, Cipro at 11 AM, magnesium at 6 PM, and Cipro at 9 PM. But it's surprisingly close to “one train leaves from Boston, heading to Chicago at 50 MPH...” And this is only one of many possible constraints: some of the drugs need to be taken with food, others without food. Some of the drugs produce side effects countered by other drugs. Some of the drugs are sensitive to humidity, or have toxic interiors which tend to leak onto surrounding pills. And so on and so forth.

Even water gets in on the act. Susannah can't drink our tap water, and for a long time after chemo she couldn't stand the taste of purified water like Aquafina. So she would take her pills with fruit juice, which is sugary: and some of these drugs raise blood sugar levels, tending towards diabetes. The nurses recommended she use energy drinks instead, but those contain vitamins that prevent the absorption of certain drugs. And so on and so forth.

Meanwhile, our house looks kind of like a pharmacy. Here's the overall materia medica of 21 Woodbridge Street, including stuff that Susannah takes on an as-needed basis, or stuff that she is currently not taking. I've left out things like gloves and masks and alcohol wipes, of course:

Now, most people do not go around getting bone marrow transplants. But most Americans, especially older Americans, do generate some version of this pile. And it is hardly any surprise that this is a significant source of problems. Misuse of medications is blamed for a large chunk of ER visits, 40% of nursing home admissions, and upwards of $150 billion annually in additional doctor's visits, hospitalizations, and the like. For people over age 65, three medications—warfarin, insulin, and digoxin—account for 33% of all ER visits. And this in a population that has lots of other reasons to stop by the ER.

Beyond some point, this is an irreducible problem: as we get older, most of us become more reliant on a range of medications, and we are more and more apt to make errors in taking them. But it seems premature to just throw our hands up in the air and say “well, no one will ever finish taking their antibiotics and ABR bacterias will kill us all, too bad about that.”

It seems like there are a number of obvious steps that would help with this. On the one hand, drug manufacturers need to hire some art students. Or some junkies. I remember in Baltimore, you used to be able to buy crack in little baggies that had cute logos on them: smiley faces, Nike swooshes, whatever. And LSD is routinely sold in tabs on printed sheets with all sorts of colorful design. So whose bright idea was it to make 75% of all legal drugs in the form of unmarked round white pills? It's all fun and games until you dump a pillbox and you can't tell which ones are calcium and which ones are steroids.

And then, someone needs to knock together the app that takes your prescriptions, compares their interaction effects and other exigencies, and provides you with a rational schedule. And then, when you realize in the middle of the afternoon that you forgot to take the shiny blue pill that morning, the app tells you to take it, or not to worry about it, or to call 911, or whatever. This would not be a complicated program, though its manufacturer would have to have some complicated liability insurance. Which is probably why it doesn't exist.

Notably, doctors can't fulfill this role very well, because they have no way of knowing if they are the only ones prescribing drugs to a given patient. Moreover, substitution policies by insurance companies mean that the drugs patients are actually taking are not necessarily the ones they were prescribed, and may have different side effects and interactions.

Patient case managers seem to provide a major line of safegaurds in this respect, even on an ad hoc basis. These are often social workers or nurses. Many of them do not have medical degrees, and—more to the point—it often seems like their oversight is not well integrated into the patient's overall plan of care. It is striking to me that nearly all of the practical information we've received about taking medications has come through informal channels: nurses, other patients, or our own research. Perhaps that's just an efficient distribution of labor, but I doubt it is what most patients are expecting.

Finally...one of the most time-consuming elements of clinic visits and intra-hospital travel is repeating long lists of medications from memory. Susannah can do this while half-asleep and/or semi-delirious, but it's hard to imagine that she's normal in that regard. There are paper printouts of med lists, but they're frequently incorrect, and it seems dubious to rely on the patients to correct them—or even to bring in the right sheet. Having this sort of information on a USB drive or the like seems like a good idea.

It is, I'm aware, very easy for outsiders to wander into an elaborately engineered world like a hospital and have inane suggestions for improvements. I get the impression that medical professionals have been biting their tongues a lot throughout the long popular debate on health care reform. But still, fresh eyes aren't a bad thing, and it is useful to bear in mind that not all means of improving our nation's health care system are partisan: many may simply be technical fixes on the other of color-coding pills.

In the meantime, Susannah has a howling dinosaur and a dancing sunflower in sunglasses.

On Germs

Preface: We seem to have reached a point where we are no longer dealing with a brand new symptom, or treatment, every four days. And this gives me a chance to post some things I wrote earlier, which got subsumed in my efforts to keep folks informed about our goings-on. Here's the first, brought up to date a bit:

And the LORD spake unto Moses and to Aaron, saying, Speak unto the children of Israel, and say unto them, When any man hath a running issue out of his flesh, because of his issue he is unclean.

And this shall be his uncleanness in his issue: whether his flesh run with his issue, or his flesh be stopped from his issue, it is his uncleanness.

Every bed, whereon he lieth that hath the issue, is unclean: and every thing, whereon he sitteth, shall be unclean.

And whosoever toucheth his bed shall wash his clothes, and bathe himself in water, and be unclean until the even.

And he that sitteth on any thing whereon he sat that hath the issue shall wash his clothes, and bathe himself in water, and be unclean until the even.

And he that toucheth the flesh of him that hath the issue shall wash his clothes, and bathe himself in water, and be unclean until the even.

And if he that hath the issue spit upon him that is clean; then he shall wash his clothes, and bathe himself in water, and be unclean until the even.

Et cetera.

-Leviticus 15:1-8, KJV

So. While Susannah is (presumably) cured of leukemia at this point, she is now “neutropenic” or more properly, I think, “immuno-comprised.” That is to say, she has fluctuating levels of white blood cells, her immune system is basically naïve, and she is on large doses of immuno-suppresant drugs whose goal is to get her birth-body's cells and her donor-cells to Play Well With Others. So, as with AIDS patients, Susannah is vulnerable to bacteria, viruses, mold spores, and other pathogens that would have no impact whatsoever on most of us. In other words, she is vulnerable to germs, in the sense understood by germ theory before the Chamberland filter forced us to distinguish between tiny little organisms and way, way, tinier infectious agents like viruses and prions.

Although germs are invisible, they have been imagined since at least Avicenna, a millenium ago, and something rather like the germ theory has existed since time immemorial. As witness the passage above, which predates the great Persian genius philosopher-doctor-scientist by two thousand years. Every culture has some sort of vernacular germ theory, which fits into certain habits of mind that have to do with labeling and naming; with semiotics. I remember playing can't-touch-the-floor as a child, or trying to step only on the black tiles of a chessboard floor, or avoid stepping on sidewalk cracks. In those exercises, one's mind paints a mask of OK and not-OK surfaces over the world, and we do this very naturally. We utilize that kind of Boolean spatial thinking in many adult activities: putting a like-colored coat of paint on a wall, for instance, or brushing one's teeth, or even attempting to systematically search a room for some lost object, or search a checkbook register for an abberrant $11.15. It is an easy way for humans to think. And it is the basic axis of the continuum towards obsessive-compulsive disorder. It's just so fun to wash your hands one more time, because then they are virginal and pure. Until you touch something.

In the hospital, there was a particular version of this thinking that dates back (in a formal sense) to at least Ignaz Semmelweis, the Hungarian doctor who pissed everyone off and ruined his own life and saved many other lives by getting his colleagues to bleach their hands before doing obstetric exams. The hospital version of it went roughly like this:

• Everyone entering Susannah's room had to put on a mask—a process that involved touching our faces, so we then put disinfectant on our hands, and then put on gloves. If we wanted to, e.g., give her a hug, we also put on a gown.
• All objects coming into the room were supposed to be sterilized by wiping them with dimethyl benzyl ammonium chloride or some comparable biocide, all of them distant descendants of Semmelweis'es chlorinated lime. Items which could not be effectively sterilized in this manner (e.g., paper, or one's own clothing, or shoes) were miraculously exempt—the first of many signs that this protocol was not entirely rational.
• The floor of her room was considered to be permanently dirty, and so was anything that came into contact with it, although it was (cursorily) mopped with disinfectant every 24 hours.
• If Susannah's hands came into contact with her own body fluids (e.g., if she wiped her nose), she had to disinfect them. This drill became so routine that she usually followed it even when she had no idea where she was or what the hell was going on.
• If we (visitors) left the room, we had to discard our gloves and mask and start fresh when we returned.
• If Susannah left the room, she had to put on a mask and gloves.
• Et cetera.

These are not the highest level of sterile procedure; in fact, they are at least three orders of crazy below the protocols designed for certain pathogens. One feature of this is evident in the very architecture of certain hospital rooms, that have reversible air pressure. For patients like Susannah, the room is kept at positive pressure, to protect her from outside germs. For other patients—who might have tuberculosis or ebola or God knows what—the room is kept at negative pressure, as if to say: sorry, kid, we're gonna protect us from you.

As Susannah has gotten better, some of these restrictions have been waived, particularly in regard to me and her other regular caregivers (Jean, and Christopher, and Cheryl). I am necessarily going to be the harbinger of the first wave of germs she gets re-introduced to, so I no longer wear a mask or gloves, nor do they. Everyone else, though, is still supposed to be at mask-and-glove distance.

Meanwhile, my attention has been more focused on protocols for Susannah's environment. Nicole and I spent several days sterilizing the apartment, which entailed moving every single item out, repainting, and individually sterilizing all the objects we moved back in with bleach, alcohol, or ultraviolet light. (Quick: how many surfaces are there on a straight-backed chair with five slats? (Answer: ninety-one(!))) Keeping the place in something approximating a sterile condition is an ongoing challenge. The Yoshidas have sent us an amazing air purifier which, according to their research, is the best possible. It's a Diakin, you can't get them here, and all the controls are in Japanese, which Yuki has carefully translated for us. It's quite impressive. You know those motes of dust that dance in the sunbeams on lazy afternoons? We don't have those.

We've also had two wonderful consultations with Dr. Rachel _____, a nutritionist who works with bone marrow transplant patients. As the resident cook, I was initially concerned that the simple version of the neutropenia diet basically said “just eat frozen TV dinners for a year.” I explained to Rachel that I am a good cook, a food snob, and I understood about germs: I could handle the complex version of the diet. She immediately warmed up to this, and began to share, in conspiratorial tones, her own germ theories. “You know what is the most disgusting thing in the whole world? The insides of soft-serve ice cream machines. It's just this sugary goop, full of bacteria getting churned over and over, and no one ever cleans them....” She gave the sort of delighted shudder I associate with horror movie fans. “Also, salad bars. Oh my god, salad bars...” Rachel also believes that the people who give you free samples in grocery stores re-use the toothpicks. And of course: “you can never use too much bleach.”

And so I've learned another set of hygienic protocols, and have since been cooking up a storm. I've especially been working on Chinese cuisine, since it incorporates its own germ theory. (Even in medieval China, the street vendors sold boiling water. And almost none of their dishes involve any raw ingredients. Just try ordering a salad in a Chinese restaurant.)

* * * *

Now, all of these protocols are no doubt grounded in the best practices of generations of nursing experience, and we take them very seriously. But they occupy so much of one's time, so obsessively, that they become psychic entities in their right, with which one negotiates and argues. Not all the nursing staff in the hospital, for instance, agreed entirely on what needed to be sterilized when. So one can pick and choose between various versions of the sterile field. Moreover, we are all myopic to the various ways in which we are compromising the protocol ourselves, while being hypersensitive to the ways that other people are doing it. And there is endless room for mind games: if you drop a pencil on the floor, it is contaminated, but when you pick it up and clean it, are your gloves also contaminated? If so, does that mean your gloves are contaminated anew every time you touch something you need gloves to touch? There are answers to these questions, after a fashion—but the questions themselves occupy a lot of one's mental energy.

Ultimately, our minds prefer to work in absolutes, dividing the world into the Clean and the Unclean. But the reality of (empirical) germ theory, like so many other things, is that it is a probabilistic continuum. There are a few viroids and bacteria floating around even in the most spotless operating theater. Christopher actually caught a housefly inside Susannah's positive-pressure, bleach-scoured room, behind two sets of airlocks. Nothing down here on earth is completely clean, and that's OK, because the odds of any single pathogenic organism causing trouble are infinitesimally low. But it is hard...and scary...to think in terms of shades of gray. We like to think: I have passed a bleach sponge over this surface, it is Ultimately Clean. We do not like to think about chlorine concentration, exposure time, porosity, depth of penetration, bacterial resistance to biocides, differential life spans of bacteria on different substrates.

So to what extent are these protocols superstition, and to what extent praxis, or as the Positivists I have been ragging on lately like to say, “science” (Sorry, “Science”)? I don't know. Tonight I am back in South Hadley, slowly running an ultraviolet wand over our cutting boards. Maybe it accomplishes something. Maybe it's vital. But whatever it does or does not accomplish, I can't see the effect. And so it reminds me very much of blessing new houses in Bolivia: the priest reading the Our Father in Latin and sacrificing a llama; splashing its blood on the four walls; burying a foetal llama under the threshold. He used to go to some trouble to make sure he got the four directions right; the layout of the house itself might not be compass-aligned, you see. We all have our science. And if we discount the ravages of extreme poverty, all our science has probably not increased life expectancy by more than 15% since the days of Avicenna.

In 2010, in the United States, it is fairly clear that our own vernacular germ theory needs work. The appearance of MRSA and other highly resistant, iatrogenic pathogens seems to be largely a result of overzealous chemical attacks on germs which, left to their own devices, would have been relatively benign. At the same time, we are a culture that needs constant reminders to wash our hands after using the toliet. It is an odd juxtaposition. We as a people have access to very good science, but we must all operate at the level of superstition and habit. It is the interface that needs our attention.