Thursday, August 26, 2010
Don't Be Like Mike
Wednesday, August 4, 2010
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 20th. 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 23rd. 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.
Sunday, May 30, 2010
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.
Friday, April 30, 2010
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.
Tuesday, April 20, 2010
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.
Monday, April 5, 2010
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:
- 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.