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.
