Don't Be Like Mike

We have a new term of art in our household: don’t pull a Mike Mulligan. This is based on a classic American children’s book, summarized intelligibly here (http://en.wikipedia.org/wiki/Mike_Mulligan_and_His_Steam_Shovel).

Here’s my take: Mike and his anthropomorphized steam shovel Mary Anne have old-fashioned gumption in a world enamored with newfangled gas-powered machines. They land in an apparently inescapable quandary when they forget to leave themselves a way out of their final excavation site. A transformative solution saves the day.

This came up because Ethan, should he dig out his entry ramp to the foundation from within, could literally pull a M. M. with the rented skidsteer. I, however, am feeling as if the moral of the tale (don’t give up? don't get stuck in a hole of your own devising? be ready be transformed and repurposed by unexpected circumstance?) may apply to my year of down-home isolation.

I can’t yet give you a treatise on transformation, physical or meta-, but I have tried to become a better observer of things. Mainly living things, long my predilection (perhaps that’s why I’m so fond of all of you, dear readers). This is complicated by the medical edict that living things (plants, pets, cut flowers, children, and more than one or two extremely healthy, masked ones of you) are Not Allowed in the house with me for a year. This appears to be why God invented the patio; though come January I suspect we may question the ways of the Divine in this respect.

I was charmed this spring by the antics of a family of downy woodpeckers whose newly-fledged members frequented the suet feeder Ethan mounted just outside my bedroom window. Wingèd toddlers, the downy juniors clumsily tested everything but the suet for edibility: the stucco, the window frame, the glass, the (plastic) windowbox, the dirt, the pansies, and the metal rod from which the feeder hung (embarrassingly slippery). Arriving finally at the mesh-enclosed suet, they clung inexpertly to the top, and chattered vociferously (hello, predators?) until their mother showed up to feed them, from two inches below. If a bird can look longsuffering, she did. We had ten species visit that suburban feeder, in a hierarchy of bravado and early morning squawking led by starlings.

Here in Vermont, I’ve been watching the birds, as well—nearby nuthatches; hawks and vultures circling thermals up the front cliff; osprey, heron and kingfisher at the local wildlife refuge—but also the wind in the trees. If you are myopic, like me, and you take off your glasses, you can sometimes see in the swaying foliage the sorts of faces that appear in well-appointed clouds. In the car, parked outside shops I can’t enter, I amuse myself by trying to identify all the plants growing around the parking lot. Co-op parking seems to have higher cultivated and wild, or volunteer, biodiversity than chain groceries, but my sample is still small. What’s the pattern in your town?

-Susannah

An Update from Chris McCandless, in Verse and Prose

Some time has passed since last words graced this page.

Like Prospero, our gifted wordsmith-sage

Hath to Vermont removed himself of late

To build anew foundations, while his mate

Must bide her time until her strength returns.

She watches from afar his work, and yearns

For that sweet time when once again they’ll call

Those granite-graven walls their home; the hall

Where sunlight pours into a spacious room

And all her green companions dance and bloom.

So now their days are passed back on the farm

Where Ethan toils to make their barn a place

Susannah can be safe from further harm

And lives can once again be lived in grace.

We note, with apologies, that a different author is at the keyboard.

It has become clear that the intrepid author of previous blogs has temporarily traded in his computer for a shovel and a skid-steer (a sort of mini-bucket loader) in order to excavate the foundations of the famous gravestone-clad barn-house (see photo) and prepare it for winter, as well as the hoped-for PASS* early next year.

It is also clear that the intrepid subject of the medical miracles and other adventures chronicled in previous blogs is not yet prepared to seize upon this authoritarian opportunity. (See photo)

It is also clear that many, many of you faithful readers are hungry for news of these two beloved people, and that as you continue to hold them in your thoughts and prayers, you need a clearer picture of their current situation. Hence the pressing into service of Christopher as Temporary Reporter – quite the challenge, given his long-time love affair with computer technology…

*PASS: Physician Approval of Susannah’s Systems

At the end of June, Susannah’s one-year appointment at Mt. Holyoke ended; it was a wonderful, welcoming and supportive place to which this author hopes they may someday return. The lease was up on the small faculty apartment where she and Ethan had lived since last August, and so they moved back to Vermont. Ethan’s father Don had recently completed a lovely little structure close to the Mitchell home on the family farm: a flexible building able to serve as a small conference center, a guest cottage, a “mother-in-law apartment” – or a newly-constructed, easily-cleaned and therefore acceptable living space for a neutropenic Susannah and Ethan. In an epic day, Susannah and Cheryl left for Boston and the Dana Farber Clinic at 6AM, in a car stuffed with meds, clothes, and various other “clean” items. Ethan and Christopher dismantled the apartment, spent the day packing a Plymouth Voyager van and a Subaru Forester with extraordinarily engineered efficiency… and still wound up Joad-like, with numerous chairs, bicycles and a dolly tied to their roofs. However, all elements arrived safely in Vermont by evening, and with help from Don and Yuki doing the “disinfectant wipedown” as things came out of the two vehicles, we were able to get minimally set up – especially the bed with clean sheets and quilts – by 10:30pm… just as Susannah and Cheryl pulled in from their 16+ hour day in Boston. Utter exhaustion had set in, but the summer stars were out in the delightful, deep silence of a June night in Vermont. For the first time since Christmas, Susannah and Ethan were home!

So how is she doing? Slowly, guardedly improving – but with some worrisome setbacks and challenges. ECP (extra-corporeal photopheresis.) was declared a success at warding off GVHD (graft vs. host disease) and was suspended in June. A significant portion of the pharmacopeia (as photographed by Ethan on 4/20/10) has been discontinued or reduced. Although Susannah’s new bone marrow/Blood Cell Production System is at work, she still needs transfusions every few weeks – mostly of red cells, which are suppressed by some of the drugs she takes each day. Sometimes she needs platelets. Her white cells/immune system appear to be holding their own, hopefully less naïve than a few months ago, but she still cannot be unmasked in public places, have indoor visitors other that immediate family caregivers, and (hardest of all) should keep her distance from children, cats, and her amazing collection of fantastic flora.

Until mid-July, Susannah continued to struggle with her digestive system, unable to eat in any real quantity the lovely, fat-and-protein-rich dishes with which Ethan constantly attempts to tempt her. Her weight gain was agonizingly slow, hovering in the 120lb range. Yet her abdomen seemed increasingly distended and uncomfortable. Karen Gilder is the wonderful oncology nurse who works with Dr. Neil Zakai, Susannah’s favorite Vermont hematologist/oncologist at the Fletcher Allen Hospital in Burlington. He made the original diagnosis of CMML last summer, worked with Dr. Antin and the Dana-Farber team to prepare her for transplantation, and he is once again her primary physician, now that she is back in Vermont. Upon seeing Susannah, Nurse Karen urged an ultrasound test, which revealed the presence of a great deal of extra fluid in the abdomen, putting significant pressure on all the organs therein… This condition, known as ascites, led to the surgical draining of a great deal of fluid on July 20^th. This took her weight down to 102lbs; which was more than a little disconcerting to all of us. Concerned that the ascites might signal some malfunction of her liver, Dr. Zakai ordered a biopsy of that (overworked) organ for July 23^rd. This was her third liver biopsy in less than a year; she cheerfully offered the good doctor the opportunity to have his jugular vein vampirized the next time...

In some ways, the hardest part of these in-hospital, out-patient procedures has been the 12-hour NPO restrictions before each test; able to eat and drink such small amounts at a time, Susannah quite literally becomes nauseous when not able to do so every few hours. During these often lengthy procedures, Ethan, Jean, Cheryl and Christopher all took turns accompanying our patient patient.

So…. Biopsy results indicate that Susannah’s liver is in remarkably decent shape, despite the many dreadful drugs it has been trying to filter for her lo, these many months! This is a great blessing, but it leaves Dr. Zakai and Susannah wondering just what caused the ascites, and whether it will return. A follow-up ultrasound indicates that it might be doing so already, but at a slower pace.

Susannah and Ethan are scheduled for a day at the Dana-Farber Clinic on Tuesday 8/3, including an appointment with Dr. Antin. Please keep them in your hearts as they travel, and as they await new understandings of her situation.

100 Days of Solitude

Today is the hundredth day since since Susannah got out of the hospital. It is a dramatic milestone, but of course an entirely arbitrary one. The recovery process is a series of gradually tapering curves, and the much-anticipated figure of 100 days (and then 1 year) can only have relevance insofar as some of those curves are, for some patients, kind of sigmoidal. Mostly, though, these dates are simply a way to delineate a slow, gradual transition into a series of sections. Like trimesters: once again, the parallels with medicalized pregnancy are in evidence.

We are, however, in the midst of quite a few transitions that seem more distinct. It is graduation season, a fact that is hard to forget in a valley with five major colleges and universities and limited parking. Susannah has just finished McCandless (2010) and completed her doctoral degree. We were unable to attend her graduation (or Yuki's, at Middlebury....or Emily's, at Brown...congratulations, everyone!) Christopher went in her place, wearing a suit that he had to buy for the occasion. The geography graduates in attendance this year were (left to right) Guido Schwarz, Susannah McCandless [looking strikingly like her dad], Steve Macauley, Kevin Keenan, Zach Christman, and Hamill Pearsall.

Guido and Beatriz came to visit us en route to the ceremony. We had a lovely afternoon with them, and had lunch at the patio at a local restaurant, the Yarde House.

(Aside: For reasons I can't even imagine, South Hadley's business community has an extraordinary fondness for ye olde fashioned names. The most egregious example of this affectation is probably the Olde Hadleigh Hearth & Patio store, but there is also Ye Olde Service Station, an Olde Towne Catering Company, and a number of others. To me, the service station makes the least sense. I mean, who wants medieval auto care?)

Ummm. Oh yes. Yarde House. The point is, this was the first time we've been able to go out with friends since months. OK, we stayed outside, wiped the table and chair with antiseptic, and so forth. But it's still a major change. And a sort of anxiety-provoking one, as well. Everything about the recovery from a bone marrow transplant tends to induce a kind of hypochondria and mysophobia. Certainly it is easy enough anyway for the human psyche to say: “maybe I should wash my hands one more time...” But when you add a small army of authority figures telling you calmly that you might die if you don't, it develops a very real sort of behavioral inertia. Most patients (and their caregivers) talk about being fearful on returning home from the hospital, though in a lot of ways this apartment is a far more controlled environment than the hospital itself. And to some large extent that anxiety is healthy, but it is a challenge to “titrate it,” as the nurses say, while Susannah's health objectively improves.

And her health is indeed improving, though sometimes it would be hard to tell that without reference to her blood-work and prescription sheet. She has been entirely phased off steroids(!), among many other meds, and the ECP has become less frequent and will possibly be discontinued sometime relatively soon. All of which is great news.

But.

What is complicated and frustrating about this process is that the cocktail of drugs both mask underlying symptoms and produce symptoms of their own. And so, as they are tapered off, weird and confusing effects ensue. For instance, over the last month or so, Susannah has gone from taking “industrial doses” of the steroid Prednisone down to none at all. Wonderful. But it also turns out that, sans Prednisone, she has no appetite. And so on and so forth.

Our daily lives are resuming towards normalcy in a similar two-steps-forward-one-step-back fashion. This is made a little murky because our lives were never all that normal to begin with. Living on a farm with three generations of Mitchwarficandlesses; renovating an old cowbarn with mis-spelled gravestones and scrap lumber; our various hodgepodge of jobs and research projects and activist projects and housemates...it's all rather idiosyncratic. Sometimes we have trouble conveying the extent of this to the doctors in our various discussions of neutropenic risk behaviors. They are concerned Susannah will want to go hang out in the mall, and eat steaks rare. I am concerned that our bathtub is outdoors, and there is a nine-foot-deep hole full of frogs just inside our front door. There is a sort of culture gap there....

In any event, in a month's time, if all goes well, we are returning to Vermont. Which is wonderful, and then again, is extremely daunting. I will be returning to working on the house and trying to make the coin in whatever other fashions I can squeeze in (anyone need some really complicated back-side website development? No? Stone-carving? Crispy duck? Data analysis?) Actually, I just spent a few days in Boston helping B Amore install Street Calligraphies, at the Boston Sculptors' Gallery. It was wonderful to be back doing some work, for a change. On the way over to Boston, I also managed to (almost) find the fourth corner in my ongoing project of visiting the corners of the states.

Susannah is also working on another paper, with some colleagues in Mexico, and she is looking at job opportunities, though it seems unlikely that she'll be back in a classroom before the next big arbitrary deadline, nine months from now.

And there is a strange flavor to all of these changes. Perhaps because we both grew up in New England, in the oldest (white) culture in the United States, we have both always been reflexively concerned about What Other People Think. I realize that this might not immediately apparent, but it's certainly present for us. Among other things, a massive personal crisis of this sort provides a certain plausible cover for reinventing ourselves in little ways. So perhaps we are not aiming for the old normal, or the old eccentric, but some new kind of eccentric. It is far too soon to tell; we don't have any immediate plans to become bungee jumpers or spoon collectors or whatnot. But who knows? According to the big mark on the calendar, it all starts today.

Bibliography

McCandless, Susannah (2010) Conserving the Landscapes of Vermont: Shifting Terms of Access and Visibility. Dissertation.

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.

Out of Body Experiences

Thirty-five days on the hundred-day count. Sorry for the radio silence: my computer finally died to the point where not even jamming a screwdriver down alongside the power key could turn it on. So I am typing this on a brand new MacBook, very fancy. Thank you for your patience.

Growing up Quaker at the time that I did, there was a pretty large emphasis on healing within my faith community. I remember Sas Carey coming to speak to our youth group, and we would all lie on the floor and visualize healing light flowing through us. Susannah’s grandparents tell a lovely story about inviting John Calvi to do a workshop in their retirement home’s dining hall. There, too, everyone wound up laying quietly on the floor, much to the confusion of the non-participants.

I was also exposed to other "alternative" medical paradigms and practices, including some (like homeopathy, vitamin therapy and mass-market herbalism) that closely mimic the rituals of what they would call "conventional Western medicine." Others were more far exotic: acupuncture, moxibustion, sclerology. All of these traditions seemed to be engaged to some degree in an epistemological conflict with conventional medicine, and nowhere was that so apparent as in the therapies whose activities are situated outside the body of the patient. I am thinking here of energy work: reiki and qi gong, especially, but also prayer in its incarnation as therapy. I saw, and still see, particular moments where this conflict became a sort of black-and-white argument between two worldviews.

But it's usually more subdued, and--pointedly--it isn't exactly clear what the epistemic claim of conventional medicine is supposed to be. Dana Farber, for instance, offers in-house massage, acupuncture, reiki, and qi gong. Susannah was especially fond of reiki. Through an tangle of awkwardness, I get the impression that the nurses consider these treatments highly effective; the insurance companies think they're ludicrous; and the doctors are skeptical, but are afraid to say so because they don't want to antagonize the patients. One of the doctors even commented something to the effect that he did not want to denigrate alternative therapies because it might diminish their (presumably psychosomatic) effects…clearly a paradox. It works well until you learn it doesn't work, and then it stops working.

I think it's fair to say that mainstream medicine is positivist, with the usual positivist shuffles between empiricism and rational thought. But it isn't the fanatic positivism of Compte or today's entrepreneurial neo-atheists. In fact, throughout our interactions with doctors and nurses in the last eight months, we have tended to push for considerably more science than they've been comfortable with sharing. In particular, Susannah frequently tries to get quantitative information, statistics and probabilities, and the doctors almost invariably hedge, often refusing to give us even orders of magnitude. At the same time, when we are directed to drugs or procedures whose mechanism is empirically verified but not rationally understood, the doctors sound apologetic. Clearly there is a widespread assumption that patients prefer theory to evidence, and should perhaps be protected from evidence even if they ask for it.

We are both, among other things, empiricists. Quakerism has an oddly empirical approach for a faith tradition, beginning with Fox's "And this I know experimentally…" and leading directly to the fact that Susannah's prayer team are organized on an Excel spreadsheet. We love our statistics. (Susannah's first two question on being diagnosed with a non-specific blood cancer was what the frequencies and mortality rates of the listed disorders were.) But, as they say, there are no atheists in the foxholes, and there is certainly a strong pressure on cancer patients and everyone around them to abandon any mode of thought that might yield less-than-optimisitic results.

Meanwhile, most "alternative" medicines have their own rationalist justifications, and in the main tend to treat empirical evidence as an acid test that they cannot possibly pass, and must ignore or circumvent by various means. There are many exceptions to this, most notably acupuncture, which is clearly effective in a wide range of experimental settings. But this anxiety is hardly the sole province of alternative medicine. Psychiatry gave up on empirical work back with the DSM-III, and they are not about to look back now, in the hoopla for the upcoming DSM-V, which promises to be basically a long, dry, advertisement for Pfizer. The surgical journals I've seen sound more like art appreciation than any kind of science. And the phrase "evidence-based medicine" seems to remains something of a fringe concept. I am also thinking of a friend of ours, a scientist who has written extensively about scientific method, getting lectured by her ophthalmologist for using homeopathic eyedrops, which she swore by. He, in turn, prescribed her a medicine that had no effect on her, and which, under closer examination of the fine print, had an “unknown mechanism.” So who is the champion of science there?

Anyway.

Susannah continues to have acute graft-versus-host-disease (GVHD) in her skin and eyes. To deal with this, she is now being treated with ECP: extra-corporeal photopheresis. “Extra-corporeal” because, like reiki or qi gong, the therapy occurs outside her body. Yes? They draw her blood into a centrifuge, isolate the white blood cells in a little boustrophedon tube, and then expose them to UV rays. In other words…uhhhmmm…her blood is bathed in healing light. Not exactly in the Quaker sense, but perhaps the analogy here is not so very thin. And then they pump the blood back in. Several times a week, for several months, it sounds like.

This sort of vampiric tanning booth is off-label for GVHD, although apparently its become more commonly used on GVHD than whatever it was initially designed for. It’s an experimental procedure with a long track record and…(drumroll)…its mechanism is unknown. There was a theory, earlier, but apparently it broke down in the harsh light of empirical evidence. Now we are left with only the knowledge that it tends to work, and will minimize the need for steroids. Susannah is still on lots of steroids, and there too, in the fine print, we find the wonderful phrase "unknown mechanism."

Behind all the clamor of philosophers, I think epistemology is a very personal and very emotional field. Would you rather be right or be certain? Would you rather know what your odds are? If there is information you can't use helpfully, would you rather not know it? Would you rather trust your eyes or the theory? These are not simple questions, and we are not apt to answer them consistently throughout all the events of our lives. But they are important questions, and ones which I think get too easily subsumed in medicine of all forms.

Adventures in South Hadley

The plan was that we would come back to our apartment in South Hadley and lead lives of quiet isolation, to misquote Thoreau. I would cook and clean and Susannah would work through her extensive pharmacopeia. We would go back to Dana Farber for outpatient visits and blood infusions once or twice a week. Benigno and Karen Sanchez-Eppler, up the street in Amherst, would do our voluminous laundry according to the protocols of what one oncologist refers to as “neutropenia voodoo.”

The Sanchlers have been doing the laundry like heroic madpersons, but otherwise things have not gone exactly according to plan. A series of (comparatively) minor medical issues have kept us running out to various clinics, and prevented us from developing much of a daily routine. Moreover, we have had a lot—a lot—of people in this apartment, far more on average than we did prior to Susannah's hospitalization. This has been very exciting and somewhat unexpected, but in aggregate it is risky. Each person, however healthy, is an added vector for disease. Some of this exposure has been kind of absurd, given how reclusive Susannah is supposed to be being. Our carbon monoxide alarm went off, for the second (and then the third) time since we've moved here. The first time, they gave us a new stove, so the second time we promptly called 911 in hopes of a free jacuzzi, and then we spent the rest of the evening and part of the following day explaining to various firefighters and property-management people and contractors that they had to wear a mask and gloves and take off their shoes before they could come inside. They were extremely understanding about this, and some of them had cancer stories—even leukemia stories—to relate from their own families. It is endlessly fascinating to me that these stories are so common and yet so unvoiced.

The third time the CO detector went off, frankly, we threw the gizmo inside the refrigerator and let it beep. (Yeah, yeah, I know.) On top of these visits with the fire department and property management, Susannah has had to go out to local clinics four times since we've been here, with much hemming and hawing from her oncology team.

While her basic numbers—platelets, white blood cells, etc.--are improving fairly smoothly, she has moved through a long list of various secondary problems. In general, this seems typical. All of the seventeen or so drugs she's on have side effects, many of them are prescribed to treat the side effects of the others, in a complex geometry. And then, chemotherapy and radiation are the scorched-earth campaigns of medicine; they cause all sorts of predictable damage and some that is more specific to individuals. Finally, a fairly common consequence of bone marrow transplants (and perhaps other transplants?) is graft-vs.-host-disease (GVHD). This seems to be a wild card, able to manifest in many different ways: as a skin rash, as diarrhea, in the lungs or liver, etc. Susannah pretty clearly has the skin rash version, which moves across her body and is very painful. It's followed by the skin peeling rather like latex paint on wood that's gotten wet behind the paint layer. This part isn't painful, but is pretty gruesome looking.

Ah, but I have not yet gotten to the gross part. Among her other side effects has been very dry eyes, and last week her left eyeball got so dry that...wait for it, wait for it...the surface of her cornea stuck to the inside of her eyelid and then tore off when she blinked. Yup. Fact.

Susannah, whose high pain tolerance causes all sorts of diagnostic trouble, described this sensation as “quite irritating” and attributed it to getting an oatmeal lotion in her eye. Eventually, however, we went in to see an ophthalmologist, Dr. Wadman (and later his colleagues Drs. Rioux and Frangie.) For this excursion we got the blessings of the Dana Farber crew, who understandably do not want her to go to an outside clinic any more than they want her to go enlist in a pie-eating contest at the local fair.

Several visits, three eyepatchs, and a bandage-contact-lens later, Susannah's eye is mostly recovered. We were very impressed by the ophthalmologists' willingness to accommodate us. They meet us after-hours, bring us in side doors, and so on. It's quite impressive. It's also probably a kindness to their other patients. With her black bandana, eyepatch, and peeling skin, she looks kind of like a zombie pirate*, and in our culture (unlike Japan) people are unlikely to understand that the mask and gloves are there to protect the wearer, not the public.

She has improved considerably since then, from the undead-pirate to, let us say, the recuperating highwayman. But there were three days or so in the interim in which she didn't want to open either eye, for fear of disturbing the cornea under her eyepatch. (You can check this at home. Close one eye, and then attempt to open and close the other quickly without affecting the first. I can't do it at all, unless I'm very relaxed.) So she was, in effect, blind. Caring for her in this state was almost diametrically the opposite of caring for her while she was delirious. Without vision, Susannah was contemplative and very, very peaceful, but also quite unequipped to meet even her most basic physical needs. Happily, she's recovered her sense of taste and smell almost completely, which many other patients have not at this point, so she could enjoy food.

And, for the alliterative trifecta, she was a chimera cyborg cyclops. How could you complain?

So, once again, we expected one sort of challenge (isolation and routine) and we get quite another (chaos and temporary blindness). In fact, we're largely past that already, and on to something even stranger, which I promise to report on without the two-week delay you've just experienced.


* This put me in mind of one of the highlights of my misspent youth (which period spans from my birth to twenty minutes ago, at any given moment). Our dear friend Birgit Schmook, who is currently recovering herself, after being hit by a car while biking, wanted to go see a “serious movie.” In her thorough but idiosyncratic grasp of the English idiom, she had said that she wanted to see an “adult movie,” but we demurred, being prudes. Instead, I briefly convinced her that Pirates of the Caribbean was an Ingmar Bergman film, and we went out to see it. In all honesty, I have to confess that PotC is not actually a Bergman movie. But there is a fairly obvious chain of literary influence. In Diner, Guttenberg's character refers to Bergman's film The Seventh Seal with the line “I've been to Atlantic City a hundred times, and I've never seen death walking on the beach”. In PotC, there are dead people walking on a beach. Right? Right? Are you with me? Zombie pirates, in fact. Ah....never mind.

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.

Day Zero

Susannah received a bone marrow transplant today, around one PM. The donor was anonymous, and will remain so for at least a year, maybe forever. We know he was male, and in his fifties, and probably from North America. (An internationally shipped bag of stem cells would have been packed in a preservative that would cause Susannah to smell like "rotting garlic," which she does not.) The process, like so much of medicine, involves hanging a plastic bag of liquid upside down and letting it drip (no pump in this case) into her bloodstream. Rather un-momentous in appearance, but truly incredible in impact.

The stem cells meander into Susannah's now-ablated bone marrow, and take up residence. They will (slowly) take over the functionality of her old bone marrow, which means producing her blood. (Susannah's blood type, for instance, will change to match her donor's; she will also lose almost all of her old immune system's “knowledge” of diseases, and need to be re-vaccinated.) Typically there is a long period of squabbling as the new set of cells come into harmony with her body. Susannah finds a new guest-metaphor in this, Shams as the guest of Rumi. (Shams was also, of course, an epically disruptive house-guest. But a beloved one.)

From now on, Susannah is a chimera, an individual with cells that are genetically distinct from one other. (The tree at the top is a botanical graft-chimera, once a popular novelty in English gardens. (The photo is by Simon Garbutt.)) At the moment, since Susannah still has the Hickman catheters, she is chimera-cyborg. Which goes to show you.

This miraculous process is made possible by the generosity of someone we may never meet, to someone they may never meet: a nearly pure example of free-sharing. It is, by itself, an awesome thing to experience. It is also made possible, for us, by a series of particular good fortunes, both biological and socio-economic, which we are very much aware of. Last but not least, it is made possible by six decades of research into stem cell techniques.

Stem cells remain one of the most promising frontiers of medical research, one of the most controversial, and one of the least understood in the popular imagination. It is my impression that the “stem cell controversy” has served as kind of a proxy campaign for the pro-life movement, a fallback line to hold after they lost Roe v. Wade. In all events, the bulk of this controversy only really relates to embryonic stem cells, a point that often seems to get obscured in popular science articles, or even in congress. (A similar and related lack of clarity surrounds cloning technologies.)

That the maintenance and reproduction of our bodies is a task fraught with ethical issues is nothing new. Nor is it new for the up-and-coming technologies to be seen as scary in a fundamental way. This whole realm of technology, we have been told in generalities since at least Humanae Vitae, is a violation of the “sanctity of human life.” But what we saw today does not feel that way at all: it feels like a gift of life, from a stranger to someone who was a stranger to them: an expression of pure love. That experience, too, should have some voice in this unavoidable debate.

For Susannah, today is Day Zero, the beginning of a count upwards as her (new) white blood cell count begins to climb, and the delayed aftermath of the radiation and chemotherapy announce themselves and ultimately abate. This recovery process is often quoted as lasting for a hundred days, but her immune system will take a year or more to recover some kind of normalcy. But now we are counting up, rather than down.