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.