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.

What It Looks Like

Prior to last August, I think I did not have much visual image of cancer or oncology. I understood cancer at a technical level, in fact I enjoyed finding cancers in non-animal systems: witche's broom trees, for instance, or certain kinds of computer errors. But I had no particular idea what cancer treatment looked like.

Perhaps this is unusual, but it was my experience. Cancer is no longer the unspeakable, deviant illness it used to be, and in the last few years, Livestrong bracelets and pink ribbons and the like have become so common as to be clichéd. But I was not that familiar with oncology as a life event, and I think it's likely that many of my age peers aren't, either. In the last few months, we have heard from scores of people who have been through cancer, either their own or a loved one's. The experience is very common, then, but it is still in some degree mysterious.

I knew that cancers were typically treated with chemotherapy, radiation, and surgery. I knew that the first two strategies targeted more proliferative cells, causing substantial collateral damage throughout the body. I knew that this was still (very) dirty medicine, but that it could also be incredibly efficacious. But, again, I had no idea what those treatments actually looked like. So, in the spirit of demystification, here they are. This is (very heavy) chemotherapy:



The cytoxan is the little plastic bag with the blue tag up on the right, I believe. The other small bags are an anti-nausea medication and some potassium. The larger bags are just saline: the chemo agent chemically burns tissue, so it's imperative to pee a great deal when you're getting it, and for a long time afterwards. The chemotherapy regimen, in this case, is two rounds of that little blue bag, 24 hours apart. It take about an hour to drip in and doesn't typically cause any immediate side effects beyond nausea.

We have been discussing appropriate visualizations for the effect chemotherapy has on the body. Susannah likes to visualize falling snow, but this is not so much a direct metaphor for the chemo as a meditative technique. The issue of just what the chemo is doing is an important one, psychosomatically. Unlike most medicines, chemotherapy is unquestionably toxic and it is easy to fall into the language of it “killing you;” it is, indeed, designed to kill her currently malfunctioning immune system. But visualizing medicine as poison sets oneself up for a nocebo effect. The usual metaphors for chemotherapy (like so many metaphors for struggle aginst adversity) are martial ones. But again, this becomes problematic for a Quaker and a pacifist. As Ellie Daniels pointed out to Susannah, substituting a sociopathological metaphor against a physiopathological disease is...well...complicated to the point of not being helpful.

The metaphor I've proposed is that chemotherapy is like a maître d’ who has to deal with very boisterous, obnoxious guests. And he (or she) has come up to the table and is saying “Excuse me, sirs, I'm afraid I have to ask you to leave. You're disturbing our other customers.” It's kind of ugly; it spoils everyone's evening a bit. But it isn't warfare. Susannah's metaphor is that chemotherapy is like trying to corral a difficult house-guest, who insists on doing the wrong things. In fact, she has a particular one in mind: a five-year-old Albanian kid who visited us once, drew all over the walls, and proceeded to lodge himself forever in our memories. Ahem.

So. This is radiotherapy, the tele- kind rather than the brachy- kind where you drink radioactive agents:




The guys at Dana Farber / Brigham are really pleased with this radiation unit, which is apparently unique in all the world. In spite of that, or, indeed, because of that, it looks like kind of a hack job when you're up close. The plastic covers are sort of taped in place, and the frames—especially the one on the floor—looks like something someone knocked together in their garage. And there's a lot of, well, string. Because, of course, it's one of a kind. I've seen the Grenoble synchrotron, and that didn't look mass-produced either.

So, basically, it's two X-Ray cameras with extra dials and no film, all inside a sort of bank vault looking place. Susannah got a preliminary X-ray to have the outlines of her lungs traced, on her body, in alcohol pen. (The lungs, being much less dense than the rest of the body, need shielding. They are smaller and less symettrical than I would have thought.) Lead cutouts get taped to her, front and back, and then she lies on this bed and gets zapped for, in this instance, 18 minutes. Seven times, at intervals of 6 and 18 hours. She just finished that this morning.

(Macintosh immodestly points out that Cheryl sent me this picture on her iPhone. But she only sent it about a foot and a half, so I'm not too impressed.) The TV on the left of the earlier picture, which I believe only plays VHS, comes pre-loaded with Star Wars. More on that later. She's wearing a mask and gloves in this picture because she's outside her isolation room, so there's a risk of her picking up stray bacteria. More on that still later.

The side effects of radiotherapy are, of course, radiation sickness. And there is no better way for we Americans (with our penchant for war metaphors) to understand radiation sickness than through our handiwork at Hiroshima and Nagasaki. And so, apropos of something or nothing, I want to recommend two rather grim novels from the Japanese canon, one text and one graphic. Masuji's Black Rain, and Nakazawa's Barefoot Gen. I want to especially recommend the later to those of you who think graphic novels are a descent into illiterate anti-intellectualism, like the satanic rock-and-roll music the young people listen to these days, etc. Check it out. I'll lend you my copy.

And that is what chemotherapy and radiotherapy look like. In this instance.

Pod 6A, Room 17

Here are two pictures that I hope will help folks visualize where their love and prayers are headed. With notes.

1 - Susannah McCandless, our plucky heroine.

2 - Punk-rock haircut, courtesy of Ethan. The penultimate in a series of progressively shorter haircuts.

3 - Pumps hooked to two Hickman catheters that run directly into her heart. (The catheters also let the doctors draw blood without sticking her over and over again.) As far as I can tell, about 90% of contemporary inpatient medicine involves a bag full of liquid getting pumped into your blood.

4 - Wall of gizmos, most of them pretty standard. Oxygen, air, vacuum, vital signs monitor, nose and throat gadgets.

5 - The wall itself, however, is part of the air circulation system that keeps the room at positive pressure, isolating everything on this side of...

6 - ...this sliding glass door. Susannah can't leave without putting on a mask and gloves; no one else comes in without putting on a mask and gloves, which they then have to remove when they leave. So there is a lot of rapid glove-changing when we go out, for instance, to...

7 - ...our refrigerator.

8 - The window faces the maternity ward. At night you can see people wrangling babies, and our nurse says you can sometime watch births, if they haven't pulled the shades, though this seems a little hard to believe. Off to the left in this picture is the children's hospital.

9 - The spacious accomodations for family members. The little green tag on the chair shows that it's been sterilized, but this system is complicated, and I'll write more about it later.

10 - Last but not least, a schedule of people who are praying for Susannah at various times of the day. It's very wonderful, and the only time I've ever seen Excel and calligraphy go together.

A Brief Update

Well, we're in it.

Susannah got admitted to Dana Farber / Brigham and Women's on Friday, and Ethan is staying nearby at Beacon Hill Friends' House. Our mothers were both down here on Friday, and Jean has been here since then. We were also visited by Christopher and Jonathan McCandless yesterday.

I will post a picture of Susannah's very-high-tech room shortly, but at the moment I lack the requisite gizmos to get the picture over to the computer. The nursing team here is great; a number of the staff speak either French or Spanish, so Susannah is merrily chatting away with them. (Brigham and Women's has a large Haitan staff, and actually a number of folks from the hospital are down in Haiti right now, doing relief work.)

On her first day here, she had Hickman catheters installed into her aorta (I think), which allow blood to be drawn and drugs to be loaded without an endless series of injections. She is already finished with chemotherapy (so much cytoxan that apparently she can never have that particular drug again in her life. Not that you would, you know, do it for fun.) She's just beginning radiation, along with taking a wide range of antibiotics, antivirals, and antifungals to kill off all the organisms she is playing host to. Between the chemo, the radiation, and the other drugs, there is a laundry list of side effects which serve to make this process fairly miserable. However, most of those have not kicked in yet. Susannah's major complaints have been anxiety, nausea, and some residual pain from the surgery to install the catheters.

Movies: On Sarah Wolfson's advice, and over Jean's protests, we have been watching Danny Kaye's The Court Jester. Susannah has also been watching Star Wars in the radiation room, where it was left by a previous patient. (Here in the ward, a previous patient left Lagda Ishq Ho Gaya, which we might get around to when we're in a more Punjabi mood.)

More shortly. With pictures and charts and graphs and stuff.

What We're Up To

It is only a few days until Susannah goes into the hospital for her bone marrow transplant. The transplant day is referred to as “Day Zero,” so it sounds like her admission to the hospital on Friday is “Day Negative Six.” (Yes, this is a delay from our earlier schedule.) A number of you have asked us what we are doing with ourselves meanwhile. Here is a rough list:

• Massage. Kirsten Chamberlin, just outside Northampton, has been both giving Susannah massage and also teaching Ethan massage basics. Annie Galloway has loaned us a massage table, so we are all fancy like that.
• Cleaning the apartment and getting rid of stuff. We are moving towards eSimplicity, where you have a Kindle instead of a library and a laptop instead of a filing cabinet and so forth. Not exactly what George Fox had in mind, but easy to clean.
• Hiking to the corner of Massachusetts, Vermont, and New York, as part of a project Ethan has become fascinated with. Kind of an epic trip. Read about it here.
• Seeing some friends and family. We just made an excursion into Worcester and saw a bunch of dear friends there. We are also learning to use Skype (Find Susannah by searching for “Susannah McCandless” She is, like Tigger, the only one.) So we can stay in touch with you in a germ-free way.
• Watching movies and television-on-DVD. Via Netflix, another form of eSimplicity. We have gotten some great suggestions for movies recently (Thank you!) Susannah has a plan whereby the chemotherapy will temporarily knock out some of her short-term memory, and she will be able to re-watch her favorite movies and not see the plot twists coming in advance. We'll see how that goes.
• Cooking. Ethan is working through Moosewood Cooks at Home and Julia Child, and having lots of fun with that. We are still waiting to find out exactly how restricted Susannah's diet will be post-transplant.
• Eating out. Which we won't be allowed to do for a long, long time. The pioneer valley is full of very nice restaurants, but we have become especially fond of a hole-in-the-wall Puerto Rican/Honduran/Ecuadoran(?) take-out place up the road from us on 116 in South Amherst. They are called Latinos, and oh my god. 413-461-3551. They deliver.
• Going to the gym after eating all that food. And trying to figure out what all those strange, strange exercise machines do. Susannah also practices yoga regularly, and we've made some preparations so that she can do that in the hospital, as well.
• Meditation and visualization exercises.
• Reading. Susannah is reading Ursula LeGuin (on the Kindle), and Ethan is reading journal articles (on the laptop). See? No paper. In theory.
• Writing. Susannah has been revising her dissertation papers about land conservation and immigrant labor in Vermont, and Ethan is working on a few projects of his own. He has set a personal deadline of February 5th, when he will be 33-and-1/3, to organize his projects. It's not looking good.
• Mapping. Susannah is working with a colleague to map the relationship between gender, land use and biodiversity in ArcGIS, using the data from her Fulbright research at Finca la Bella in Costa Rica. Her hypothesis is that land managed by women (e.g. patio gardens) may be more biodiverse.