Yeah — and Another Thing!

How did you count the cars in a train?

Were they all coal gondolas or grain? Did one of you count the boxcars and another count the rest?

Did you take the first 50 then hand off to your friend? Did you count it all together and average your results? Or take the highest number and write it on a wall? Were your trains a mile long? Or two? Did they hoot just for you? Did they shake the ground you stood on? Did the diesel roast your shorts? Did it shriek the bridge to pieces?

Did you count the engines?

As soon as we could stop shouting the numbers, we disagreed about that. Engines were not cars, yet it seemed unreasonable to ignore a two or a five when you were heading for a record. The loudest engines-in argument came from the same gang that squashed nickels. We sacrificed our pennies to the 10-ton wheels and hid the copper leafs before going in for supper.

Where to begin? Software developers often like zero, rocket launchers like a pre- and post-event count. Musicians like four and another. Biographers usually write in the grandparents. Historians just jump in and explain later. Compared to which the story-teller’s “Once upon a time” seems, if not rational, at least integral.

My doctors prefer the launch metaphor. My official transplant count began at -6 and gathered speed along the number scale, rolled right through zero before racing to the 100 horizon. So, “100 Days in Omaha” could have been “106 Days in Omaha” — well, 107.

But the process really started with my brother Donald, his arrival in Nebraska and hospital preparations, mine and Karen’s presence at those events, and the inevitable etceteras that attend them. That would have meant, roughly speaking, “114-maybe-115-or-so Days in Omaha”. And then came the unexpected news that we were paroled for good behavior. Our conditions included a weekly Omaha meeting with a parole officer, and we were to live in a neighborhood where raw salads would not be a daily temptation. That would be Des Moines. We were no longer “in Omaha”.

You start off thinking it’s going to be simple. You might even think you know the ending. But we live in a Post-Caboose World. The train never really ends. It just isn’t there.

Such an odd week — well, such an odd week-and-a-half. It’s been eight or ten days since I last wrote. I’m less embarrassed about the irregular publication itself than I am about its potential effect on readers. Apparently many of you, noticing a gap in the dates, wonder whether I have dropped dead or at least fallen into an irreversible state of decline. I suppose I should set up a graphical meter, an altimeter or healthometer for quick checks.

The medical news is pretty good. I have slight but unambiguous evidence of graft-versus-host disease (”GVHD” in the vernacular). This is the complication that has bedeviled transplants of all kinds. If you know it’s happening, you can control it, though this may mean that you control it for the rest of your life. In the case of an organ transplant, it’s just a bad thing. But in my case, there’s a silver lining because it demonstrates that the Donald’s stem cells are getting established and producing new T-cells that are taking over from my old, crappy T-cells.

Despite that silver lining — and by the way it is literally a lacy pattern of pearly-white that lines the inside of my mouth (too much? OK) — I’ve been having an anxious week. Anxiety is not something I understood from my own experience; I’m not normally a worrier. But anxiety is a byproduct of one of my pills and this chemical effect has let me see how I might approach my day if I were.

Each new decision turns back to find its tail and continues in several circles. Then the circle breaks into other, smaller circles, which themselves repeat the process at a smaller scale. Within minutes, they’re too small to understand but their buzz can’t be ignored. It’s impossible to think about them and impossible not to think about them. Nothing of critical importance gets done. Nevertheless, I’m busy. I’ve found something to do that has no consequences (though I can invent some) and I bury myself in it. In fact, I can even enjoy it, making a state of anxiety feel perfectly normal.

Nobody worries about nothing. There has to be at least some trigger worry. In my case it was returning my electronic ID card and office keys. For several weeks now we’ve all known that, if my treatment works, Karen and I will return to Vancouver, and if it doesn’t work, Karen and I will return to Vancouver. So my project role at the Iowa State capitol is nominal. This week, I thought it would only be good manners to return my keys. Funny how that makes you feel.

What’s even stranger is how possessing these bits of metal and plastic offers reassurance.

Thinking too much about graft and host, following the news about summary trials and deportations of illegal workers rounded up in Postville, Iowa, seeing the movie “The Visitor”, and turning in my beeper card, has got me confused about the sanctity of geographic and artificial spaces. I suppose, as bona fide members of the richest place on earth, we will soon carry national identification tags that make things go beep. First we will resent the implicit presumption that we cannot be trusted, then these bits of plastic will reassure us that we are who we think we are and deserve to be here.

Oh heck, how about some pictures? Here’s the beautiful place where I used to work.

Let’s start with Edwin Blashfield’s “Westward” in which “…the Pioneers [are] led by the spirits of Civilization and Enlightenment to the conquest by cultivation of the Great West.” Blashfield was an academic, conservative painter in the sense that he didn’t let any ambiguity get between his symbols and the presumptions of the time — 1905.

My cube wasn’t in the capitol — it was in an only slightly less impressive building across the street. Here’s my hall.

But I was always happy to have a reason to visit the capitol itself. Here’s the standard calendar shot.

I can’t resist a squircle for my friend Tom Magliery.

This dome isn’t quite as much fun as the dome of the Basilica di Santa Maria del Fiore where Cosimo I de’ Medici decided to scare the beejasus out of us with The Last Judgement. Another time, another set of presumptions. So I chose the scarier of my two pictures, which is looking down. For the record, this dome’s interior is decorated with an Iowa blue sky, a Stars’n'Stripes, an eagle and the badge of the Grand Army of the Republic. Did you think it was over? I’m writing this on Memorial Day.

The great thing about working with legislation is the motivational posters. You don’t get any of that “Teamwork” nonsense — you know, the posters with the pictures of rock climbers and sailors on a black field with “Excellence!” in white underneath. No, you get the real thing. We should print it on the coffee cups.

Nice place we got here.

Looking for some way to leave lymphoma out of this week’s note my editor (the one in the back of my head) did what all editors do, he sent the photographer out for pictures of cute dogs and pretty girls.

I found myself walking the dark streets of downtown Des Moines on a Thursday night talking to a dog in French. “Frimas” is a Blue Picardy Spaniel or as he would say, if he could speak rather than simply listen to French, “un Epagneul Bleu de Picardie.” Linguists will point out that Frimas should probably have been taught to speak Picard, one of the unofficial but persistent languages of France, and to be walking the streets of Des Moines speaking French to this dog is actually even sillier than it looks. In my defense, to quote another icon of the region, Inspector Jacques Clouseau, “Thees ees not my dawg.”

And Frimas knows this. In fact, he is Jeffrey’s dog, but in practice, at least while he stays with us, he is Karen’s dog. Because Karen has the Dog Voice.

Bella, the downstairs dog is less obedient, but smaller — so it doesn’t seem to matter. She’s my dog most days while her owner is at work. I’m teaching her how to debug XSLT, so far without much success. And it’s not her fault.

Several friends showed up this week and persuaded me to turn on the comments. I had them off because I couldn’t deal with the spam, but I’ve clued in now and have turned them on after installing a filter. Thanks Bruce and Ruth for prodding me.

Martin from Dublin pointed out that there was nothing here to show my domestic side, that I wash the dishes. In fact, I’m less energetic about dishes than I should be, though I try to keep up. It’s easier when I have company in the kitchen. Sasha, on the right, drove all the way from Lawrence, Kansas, to help out. Karen, on the left, has been wielding the big spoon. We drank too much coffee and got all sentimental about Vancouver and Dublin.

Update

Penny asked, in a comment, about that odd thing I’m holding. Penny is the best editor I never deserved and despite her early experience with me, persisted in her magazine publishing career. It’s a colander that I’ve photographed in such a way that you can’t see the holes. Then it occurred to me that it’s a metal colander — something we don’t see much anymore. So here’s a better picture, along with my other favorite metal implements.

These have been around Karen’s kitchen, in Vancouver, Harrisburg and now Des Moines, for a few years, and she let’s me use them, as Mark Twain might have remarked, “As long as you use them in my kitchen.” In fact, she junked my Teflon-coated skillet — which gives me an excuse to include a shot that I just like.

This is romaine lettuce, olive oiled, garliced, and ready for a suntan under the broiler. Like any good religion, mine comes with dietary restrictions. “Don’t eat your greens!” is what the doctor says. They’re very risky business because they grow in dirt, and that you don’t know where that dirt has been. One defense is triple washing, which may be effective. The other is broiling, which may be effective and is certainly tasty.

I’ll bet that on Friday nights you can still see those police chase programs that show “real footage” shot from the dashboard of a police cruiser while some hapless local delinquent pushes his ‘97 Grand Prix to the limit, hopping over the railroad tracks, nipping the corner off a suburban lawn, winging a lumbering dump truck, swiveling through a strip mall parking lot.

They always end in disaster — otherwise, TV wouldn’t be doing its job. But you know that’s not true. You know that somewhere on the shelves are the tapes you’ll never see, the ones where he just got lucky, just got away, just disappeared. You know those tapes exist because you know that if you were in the driver’s seat, you would have missed that concrete pole, ripped through the fence and you would have tracked across that open field like a crop duster then headed for Utah. You know it could happen!

This comes back to mind as I wait for my Tuesday appointment. I need a little distraction because one of the problems with life-threatening diseases is that you meet a lot of sick people. Fortunately, most of the people in the waiting room can be quickly and comfortably placed in the “not me” category. Nice women who have breast cancer. (I don’t have breasts.) Kids with big, blue eyes and bald noggins. (How can this happen to a kid? — I’m not a kid.) Black guys. (My DNA isn’t black … is it?) Old gentlemen who wear blue veteran’s caps and sit quietly in their wheelchairs looking as if they would rather just forget the whole thing. (But, I’m not old.) Then you see a guy from your local league. Without hair he looks pretty similar, and he too is dressed in his “I usually wear a tie” casuals. As I have, he has delegated authority to a partner, but has retained final say. He and I talk easily to strangers because that’s what we’ve done for thirty years. We have laugh wrinkles in the corners of our eyes and, under the present circumstances, we’ve relaxed a little and sometimes skip the morning shave.

Neither of us has to say so, because we already know that inside we clench our steering wheels and our right foot jumps from gas to brakes to gas. Our Grand Prix lunches through the red lights and sways across the double line. The police lights flash in our mirrors and every moment threatens a glass-splintering finale. We nod and smile. So far so good.

But the show runs only half and hour and somebody’s got to get caught. “John Turnbull?” I nod to the nurse across the room. “Date of birth, John?”

“Still the single relevant date,” I think to myself.

We’re here to learn about my chimerism levels — how much of my blood is my crappy old stuff and how much is newly-minted from my brother Donald’s stem cells. The new stuff will cure my lymphoma. The crappy old stuff will let it spread like rust on a junker’s front fender. My early chimerism counts took me from a high of fifteen to a low of five. Not good numbers and not a good direction. We’re not sure what to expect when Doctor Julie knocks on the consulting room door and enters.

My blood chimerism is fifty per cent. At least, that’s what it was a week ago when the blood was taken and there’s no reason to assume it’s declined. That definitely sounds good to me, but so far there’s been nothing definitive about this disease. “Your T-Cell counts are still low.”

This is unsettling; I hadn’t realized there were two ways to count, and the T-Cells are still hanging around at only five per cent. Doctor Julie is … sanguine. She reduces the anti-rejection dose and mentions that she will be away next week. That’s good news — nothing awful can happen when Doctor Julie is away.

The uncertainty is weighing on us. Each week reveals an unlikely, but crucial detail. Annoyed, I say to Karen on the way out, “Another ambiguous week,” realizing then how much I prefer it to certainty.

My friend with the laugh wrinkles has had a different kind of consultation. He’s run out of ambiguity. His lymphoma is supposed to be simple kind, but isn’t. Transplant didn’t make it. He’s beyond the chemical fix. He’s dusting along a dirt road, leading a parade of flashing lights and there’s a road block at the next concession where the cops are reaching for their guns. He’s looking across that field.

Through adversity, one discovers unexpected capacity for endurance. Much of this week — I’m embarrassed to say how much — has disappeared into the tortuous exercise of a 2,000-piece picture puzzle. We have discovered that it is 1:30 am more than once.

I could dignify this with speculation about the meditative qualities of puzzling or the historical education that we are brushing up with “Tapestry of the Centuries” and its “350 of the Most Influential People and Events of the Last 2000 Years”. For example, you may not have known that Feliks Edmundovich Dzierzynski, an aficionado of Polish poetry, was head of the first Soviet secret police organization, but more important for our purposes, his hat is on a one-knob piece facing west and the rest of his face is on an asymmetrical-two-knob piece facing north-east. That’s 0.1 per cent of the solution right there.

The corn is going into the ground in Iowa. We see the distant silhouettes of tractors against the blue sky along the upper ridges as we drive west to Omaha in the morning, and their headlights in the fields as we return east to Des Moines. In a few months, much of that corn will have been burned in gas tanks as ethanol. That’s the Ponzi scheme that takes everyone’s money to place in corporate corn-planting hands, all in the unlikely hope that we can carry on as usual but won’t have to kill as many Arabs to do it. As a bi-product, we’re inducing starvation for millions. I wonder how all of that will be represented as one of the “most influential events” of the next era.

The Omaha trip this week revealed no startling news. My prograf was a little high — one less little-yellow-poison-pill per day now. And gray hair survives chemotherapy better than dark hair. Otherwise, we are in suspense waiting for next week’s Good Guys vs. Bad Guys score. It’s like being a basketball fan who can’t see or hear the game.

This week started with a question that I haven’t been able to answer. No, it’s not the “Why me?” question victims are supposed to ask — Why did I win the lottery for this particular disease, this particular stray bullet, this bolt of lightning, this plummeting grand piano?

It’s the higher-yield question, the other “Why me?”: Why do I get the treatment? Why does a treatment that is difficult and fantastically expensive even exist for people who are well beyond reproductive age? And why does it exist beside the Missouri River? I haven’t found the pieces yet but they’re on the right hand side where Abraham Lincoln, Albert Einstein and Theodore Roosevelt form a triangle that contains Sir Alexander Fleming. Bella, the downstairs dog, agrees.

What do you do in cold, rainy April week in Des Moines? You set goals with firm dates and you keep your commitments. Simon and I, on our own while Karen was in Vancouver, decided to see one feature movie every night. We nearly succeeded. Two bank heists, a painful history of growing up in Iran and a delicate story of Egyptians and Israelis. Not bad, considering that we had a couple of social obligations as well.

How odd to be almost alone in each of the theaters. Not once were we accompanied by more than a few others and at one cinema, we were half the audience. We drove great distances to shopping mall cinemas where we could have parked a tank division and we were alone. We drove a few blocks to the university district on a Saturday night where a small lobby-full of people were heading home after the early show, leaving about eight of us to see the nine o’clock. That was a weekend crowd by local standards. We are continually amazed that despite the appearance of prosperity here — new construction and the vast western suburbs — so few actually “live” here.

It was no surprise then to have I-80 almost entirely to ourselves Monday evening. And just as well. We were experimenting with a GPS receiver. I had it propped on the dash and was reading out the speed changes while Simon drove. Despite the moderate numbers on the GPS, it felt pretty fast and we were certainly covering the ground. It was only as we approached Omaha that I realized I had set the device to read in nautical miles. Quick trip.

It was a happy and sad trip too. We picked Karen up at Eppley Field early in the morning and then took Simon out there again to see him fly away to Toronto. I’m am a lucky guy to have all of these travel plans made just for me.

Karen after a red-eye flight: Vancouver, Seattle, Minneapolis, Des Moines.

Doctor Julie has taken away my Cellcept (mycophenolate). Coincidentally, the FDA is reviewing data reported in the last few months that may show a causal connection between this and a similar drug to progressive multifocal leukoencephalopathy (PML), “a life-threatening disease”. Well, what if life if not threatened? Tacrolimus is also on the suspect list and I still have those little yellow pills.

The more I learn about cancer treatment, the more I suspect that we are trying to suppress a prolific and endlessly ingenious system that has as its only goal self-preservation. Like us. I suppose you can have all the numbers reading correctly and still arrive at your destination much earlier than you expected.

“One or the other of us …

has got to go.”

Oscar Wilde died in Paris in 1900, after a long “duel to the death” with his wallpaper. The wallpaper in our Potter’s House room is hostile, insistent and yet meek. But I survived it. I hope I never count its plant pots again or sit in that Popsicle* chair.

We are now out on parole, having given our word that at the slightest sign of graft versus host disease we will rush back to Omaha. I’m also committed to a weekly session with the Doctors. These are something like weekly sales meetings where the encouraging fictions of last week are displaced by the current hard numbers which are then softened by the encouraging fictions for next week. The implicit threat underlying the exchange is, of course, that wallpaper.

Finally, 59 seems like a nice, round number to me, because I was never strong in math, and a good place to pause and consider the road. Now that we are in Des Moines and I am no longer The Patient, I expect to be distracted with details — the vacuuming and the dishes, for example. In other words, I expect things to get boring again.

There’s still the question of whether all this is working and I’m certainly not prepared to abandon a story with such a facile suspense. The best choice, it seems to me, is to change the rhythm and slow down to a weekly schedule. My next message will be on April 23, the Wednesday after my Tuesday session. As Oscar also said, “It is a very sad thing that nowadays there is so little useless information.” I will do my best to set that aright.

* Popsicle is a registered trade name of Unilever United States Incorporated. See? This is easy.

Chimerism is a rare phenomena in nature and a fairly common one in a transplant hospital. I mentioned in an earlier post that I am partly me and partly my brother Donald. This is not a figurative statement — my bone marrow and blood system has two different DNAs. I’m fortunate that Donald’s alleles — and for that matter, my brother David’s as well — are almost the same as mine. This isn’t assured or even common among siblings and its even less common when you’re an only child. Good work Bob and Joyce.

Donald and David, the image of nonchalance and confidence.

The question now is how much? It’s not easy to answer, at least I assume it’s difficult because it takes a couple of weeks. Doctor Cathy was especially eager to recognize my excellent levels for platelets, white cells, red cells, hemoglobin, iron and magnesium, etc., so I knew something was up. She flipped the stapled pages and her tone changed. “The chimerism count is concerning.”

On my first chimerism count, the assault campaign was looking promising. The good guys had established a beach-head and were softening up the bad guys’ defenses with light shell fire. The tacrolimus and mycophenalate were providing air cover over the mountains and it looked like a matter of weeks before the bad guys would abandon their posts, leading to a rout. But news from the front travels slowly. What we know today represents the facts on the ground two weeks ago. The latest reports show a disappointing reversal. The good guys are down to only five per cent.

I try not to consider the obvious: that fifteen to five per cent represents a downward trend and that, if it was five per cent two weeks ago, it could be zero now. I consider, instead my overall feeling of well being, my increasing level of energy, my stable appetite, and my life-long record of plain dumb luck. I also take into consideration the matter-of-fact expression on Doctor Julie’s face after Doctor Cathy had delivered the report. Doctor Julie chose a new, lower level of mycophenalate and said, “We’re looking for a little host versus graft.”

You might take the view that the air-cover is being called off so that the bad guys venture down the slopes. This provides an opportunity for the good guys to engage in battle, make an advance and call in a new battalion. I try to keep in mind that the stem cells transplanted from Donald are still there. I didn’t count, but there where several thousand of them and apparently, at least in theory, you could generate a whole new system from only one. It’s like having an unlimited supply of patriotic youth. Ultimately, one of us has to prevail, however, and it may not be the good guys.

But my general health is so good that Doctor Julie has confidently released us from Omaha except for a weekly morning of tests and appointments. Yes, we are packing our bags and heading home to Des Moines.

A great-grandfather who drank a little (he was a city health inspector early in the twentieth century and probably saw a good deal that he needed to forget), had a horse that could always bring him home to the side door whether he was driving or not. This story evolved in the next generation to the claim that the family car had learned the daily route and could just drive itself. My father demonstrated the truth of this to my brother and I in the back seat by taking his hands off the wheel for several minutes while the car found its own way along a winding street. He was really good at steering with his knees because he smoked.

We take things more seriously now. The kids are strapped in, both hands are on the wheel and no one is smoking. We are maximizing our longevity as we are unique individuals and we don’t believe in sadness anymore. And few of us has had any experience more threatening than a kitchen fire.

This is what happens in your head during the two-hour drive back to Omaha late on a Monday night, because the due west route has diminished with familiarity (railway trestle, first windmill, second windmill, veer south west, river), and the Volvo’s heater is stuck at HOT, and the trucks are rolling like a night train.

Simon and I creep back into Potter’s House and up the old staircase to our room. Tuesday morning’s blood draw, assessment and appointments may bring pursed smiles and unwelcome numbers.

At the risk of publishing yet another self-portrait (but why hesitate? the blog, after all, is the optimal self-portrait, flattering or disparaging), I thought I’d mention hairlessness. As we all know by now, chemotherapy makes you bald. We wear the pirate kerchief, the battered baseball cap or the wig as a rule, and not just in vanity. Being bald means being cold. All the time.

What I didn’t appreciate — and doctors don’t necessarily warn you about this — is that you will be bald everywhere. Yes, even there. So not only is your head cold, but the rest of you has to be wrapped up too whether you are inside or out. The slightest exposure of bare, hairless skin is like having a thermometer hooked up to a Jimi Hendrix reverb pedal and a Fender amp.

You can imagine then that as the chemicals wear off and hair begins to reappear, there’s a relief, a renewed confidence in the natural cycle of beardedness and shaving. This is the rebarbative Mr. Turnbull.