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.