Yeah — and Another Thing!

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.

Several times each day Karen or Simon will ask, “Did you take your pills?” This is the signature phrase of old age, of course, but I won’t dwell on that. Instead, I’d like to warn everyone who isn’t yet aware, of the need for a systematic approach to pills.

Often, my answer to their question is “Oh Damn! I have them right here, but I got interested in (insert any one of: Juan Cole’s reports from the middle east, James Kunstler’s assessment of peak oil and the future of suburbia, sailinganarchy.com, Congressional news on Joe Biden, TED.com, the National Institute, tetesaclaques.tv, Elliotte Rusty Harold’s XML news site, an XQuery tutorial, etc., and we’ve pretty much burned up the morning. Oh the pill system. Right.)

The pill problem is characterized by large quantity, daily variation, confusing nomenclature, variable format, and changing prescription. You could add to that the need for portability, and you’d have what sounds to me like a messaging server software application with a mobile client interface — maybe timed text messages listing the pills for the hour, and a web interface on which you’d sell advertising for pharmaceuticals or comfy shoe inserts …

OK. Simon and I decided to work on paper. The result is still pretty impressive: a table of drug names against dose times, representing a week, which is the natural cycle. Each intersection enumerates the number of pills given the current dose format. We fill a week’s worth of pill packets — tiny zip-lock bags on which you can write a label — in one session. The pill bottles are set up in a row in table heading order and we read a line, representing for example, Tuesday morning, “Acyclovir 1; Bactrim 0; Fluconazole 2; Mag Oxide 4; Mycophenalate 2; Tacrolimus 2; Ursodiol 1; Nexium 1,” then, having counted these onto a sheet of paper, I pick up the whole mess and slide it into a waiting pill packet named “Tuesday morning.” That’s 21 packets (lunch is mercifully consistent) that we arrange on the kitchen counter in day order.

Simon can tell at a glance whether I have picked up my pill packet for the day and time. What he can’t tell is whether or not the pills have actually slid down my gullet. We’re working on that.

Never one for hats and ever forgetfull of suntan lotion, I’ve done pretty well for myself considering the hours I’ve spent sitting in a boat and staring up at the set of the sails. But all that changed after a poignant lecture (you may remember Felix from #40, March 28). This is the new sun-worshiping me. And it’s only April!

My girlfriend’s gone an runofft and left me here at the half-way house.

Karen and I counted up the months and realized that we have not been apart for more than a few hours since early December, 2006. So it’s about time she had a break. I’ve heard so many stories of people looking after their partners, sometimes for several years. I hadn’t really appreciated what that meant until I watched Karen keeping everything in line for me and looking out for every chill and sore foot and upset stomach at every hour of every day and night.

Having been brought up in the Ontario and BC medical insurance systems we are amazed that looking after the coverage is a part-time job and also occupies experienced people at the hospital who argue, on my behalf, for my doctor’s choice of treatment. I’ll leave the politics of health insurance for another time.

Simon has passed his qualification and has taken over as 24-hour, co-op, care-giver.

And Karen has traveled to Vancouver to see our many friends there and look after some neglected business. She tells me, at mid-day, that the mountains are clearly visible with only puffy white clouds nearby the snowcaps. People are dressed in T-shirts for their walks and runs along the seawall. The streets are busy and the restaurants are full. She says she’ll be back next week. We’ll see.

My lymphoma and I communicate primarily through the medium of my skin. Other people with the same diagnosis don’t have this advantage because their lymphoma leaves their skin alone. If anyone knew why such differences are possible, we’d probably be curing lymphoma with a pill. In the meantime, while the medical people carefully track measurements of more than 20 different aspects of my blood condition, I like to check my legs. What do you think?

Simon was uncomfortable with this bubble-bath shot, feeling that it was slightly “sexual”. It hadn’t occurred to me, but I note that he did not say “attractive”. In fact my ankles are looking rather lovely, though I’ll need a pedicure; chemotherapy does strange things to your toenails.

The part that really interests me — and I know you’re just pulled right in — is the gradually changing pattern of light and dark skin. Karen calls this ‘pinto’, the doctors call it ‘variegated’, but I like to call is ‘glaciated’ because it reminds me of the pattern of eastern Canadian lakes formed by a glacial abrasion that rubbed in many directions. By now the dark areas have receded, but I was once solidly dark unless I was red. This was not an attractive darkness; I called it Duck Pond. For the technical people who may be reading this, try #666633.

The relationship between my color patches and lymphoma is hardly understood, but it’s agreed that less darkness is better. My assumption is that the dark areas look this way because there are underlying damaged skin cells. Oddly, when I first saw a dermatologist, he took a sample from the only normal patch I had at the time — a quarter-sized area on my stomach. His analysis: perfectly normal.