Yeah — and Another Thing!

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.

Doctor Julie — I feel comfortable using her first name because she’s had her hands on my most intimate lymph nodes — unhooked the leash today. With continued good behavior, we will be able to move back to Des Moines, making only weekly visits to Omaha.

I see us in the Volvo blazing along I-80 in the setting sun. (Crane shot, rising to horizon as Volvo passes beneath, sound of hot engine receding in distance over a funky banjo riff.)

Of course, should anything change in my condition, I am ordered to return to base forthwith. (Low, wide angle, wet Volvo in rain, engine cranks and does not start, oboes in minor key.)

We’re to watch myself carefully. Next Tuesday will tell whether I’m an Omahan or Des Moiner.

The party was over Monday evening when we put a few essentials in the trunk and got back on I-80 for a ten o’clock arrival in Omaha. Potter’s House has a curfew and arriving their later than eleven entails a complicated exchange with Security. For this and other reasons, our faces were long.

After being away from the hospital for only a few days I realized how thoroughly the patient role infects your spirit. As kindly and caring as hospital staff can be — and they can’t be better at this than the folks at the Lied Center — you are, finally, required to play the patient role.

I can imagine having a crucial, but uninteresting part in a successful play. Night after night you put on your costume and makeup, wait about in the wings playing cards with the union stage hands perhaps or reading the newspaper, and then, on your cue, deliver the mysterious parcel or ask if they would like to be seated by the window or poke your head through the court-room door and ask whether a verdict has been reached, and then you return to a basement room to remove the makeup and change into your own clothing and leave the theatre by a backdoor. Every night, the play is applauded long after you’ve had your hamburger and chips and even if you were there you would know that none of this enthusiasm is your creation. You could leave the cast and the part could be passed along to any of a hundred eager male actors in middle age, but it’s yours and you stay. Maybe another part will come through, maybe after months and months the damn thing will see its final curtain, but you keep showing up, every evening except Monday, because you’re the actor with the role.

I’ve got a part, “a patient of the clinic”, and I deliver it in a style that is distinctive from the four or five patients who are seated in the waiting room when I arrive. The director is preoccupied with the lead roles so I choose to play it with cheerful confidence forcing the other actors to contrast it with sullen lassitude. I’m on for a few minutes of nursing business and then I exit the clinic with a sunny, “See you next week!”

None of the reviewers has noticed me. But my bit early in the show is really just a setup for the action that takes place in act two. I should be able to tell you more about the play, but to be perfectly frank, I read only my own scene and I’ve never bothered to take a seat in the upper balcony to see where it goes. Maybe I’ll do that later in the summer when the house is getting a little sparse, but in the meantime I’d rather get out early and have a burger.

When Mao Tse-tung felt the needed to impress the Chinese people with a show of resolve and vigor he swam across a river. Citizens lined the banks and cheered him on as if their lives depended on it … as well they may have.

When I want to show resolve and vigor I choose the recumbent. It’s so much safer for everyone. I was resolute and vigorous enough to pedal one of Des Moines’ city bike trails; this one winds past the riding stables and out to the art gallery. Simon, Karen and I “poodled”, riding as slowly as possible — which is not that slow on a recumbent — and taking frequent breaks to admire the woods. Citizens smiled and nodded good afternoon.

Church Basement Tango sounds like a contradiction doesn’t it? Argentine Tango was, after all, the child of the Buenos Aires streets where the working class gathered to dance, drink and, as legend has it, settle disputes. They danced on the stone pavement to the sound of a bandoneon or a barrel organ and probably a guitar or two.

Karen and I have been dancing (when I’m vertical) up the road in Ames, Iowa, with a terrific teacher, Valerie Williams. But today, Tango came to Des Moines, to the basement of the Visitation Catholic Church. Father Kevin Cameron had been to Argentina. On his return to Des Moines, enthused by Tango, he began lobbying to bring Valerie south for Saturday lessons.

Since I was not willing to dance in a surgical face mask, I was restricted to my usual and favorite partner, Karen. Here, she dances with Jeffery Dawson.

My title, “100 Days in Omaha”, was chosen at the point of lowest expectations and may no longer be accurate. Doctor Julie told us on Tuesday that if I looked as well on Friday, we would get a weekend pass. I musta’ looked real good because Doctor Cathy asked, “Would you like to go home for the weekend?”

“I’d rather go to Paris for the weekend.” But we settled for Des Moines. Karen, Simon and I raced each other back to Potter’s House. We packed, filled the water bottles and had the Volvo pointed east on I-80 before any of the Doctors could change her mind.

Medically, this means that I’ve gained enough overall strength to be two hours away from help if I go into a sudden decline. At this stage, that would look like little red rash spots signaling the beginning of a graft-versus-host attack. However, Donald’s stem cells seem to have their papers in order and though they are regularly stopped and checked at road blocks, they have so far managed to make it through without arousing suspicion.

More than anything else, this brief reprieve means home cooking. It’s hard to describe how the combination of chemotherapy, which affects taste, and hospital food can combine to produce that “urp” feeling in response to merely walking by the cafeteria door. Karen cured all that with a big bolognese pasta sauce.

Des Moines looks lovely this time of year — because it’s not Omaha.

You may have noticed an improvement in the quality of the photographs. There are two reasons: Simon, who is a press photographer, has taken some of the photos, and I bought a new camera! Naturally, I ignored all the advice I was given (most people ignore the advice I give them), choosing the Ricoh GRD II that Simon carries in his pocket, then falling for the Canon G9.

Like the Ricoh, the Canon allows complete manual control so I can continue to take mediocre photographs, but now I will know precisely why. You may recall me swearing never to buy a Canon product, because I was so suspicious of the turret lens on my dead Canon Elph. But this G9 is just so right. (So is the Nikon 5100 if this kind of thing really interests you.)

The key realization for me was that “pocket camera” usually means “toy camera” unless you are taking pictures in strong light. As Johnson would have said, “… it’s like a dog’s walking on its hind legs. It is not done well, but you are surprised to find it is done at all.” Here’s a picture of my son Simon that I would not have caught with the Elph.