Hi, Tony! Stories Podcast

Home Stories How We Do It Scrapbook Transcripts Tony Help Us Frequent Contributors

I picked up my cell phone this morning and snapped the view from my bed—an amber-bottled arsenal of drugs stretching from one end of the night table to the other. In no particular order

(some with names new enough to trip my spelling checker) stand Zolpidem, Omeprazole, Valtrex, Lorazepam, Ondansetron, Prednisone, Prochlorperazine, Allopurinol, Ciprofloxacin, Oxycodone, and Hydrocodone.

They aren't the only medications I take; you don't get to be my age on just aspirin. Waiting for me on the kitchen counter downstairs are six more drugs I swallow daily for heart disease and assorted other conditions. The shapes, textures and even aromas of these pills and capsules are so familiar I'd know them in the dark. I lay them on my palm like travelers on a package tour and bring them aboard in a single gulp.

These new meds are harder to handle; they fall into complicated, even overlapping categories. There are the ones I take to boost chemo's powers (Prednisone for the first five days of treatment and Ciprofloxacin for ten days beginning the following week), the ones I take to repel chemo's side effects (Zolpidem or Prochloroperazine for sleeplessness, Omeprazole or Lorazepam for nausea, Valtrex and Allopurinol for shingles, rashes, sores or excess levels of uric acid)—and the ones I try not to mistake for each other or take twice under different names (Attavan is not Ambien; Zolpidem is not Zofran but the generic name for Ambien; Omeprazole and Ondancetron share the same lulling rhythm but dance in different directions.)

With Harriet's help I'll sort them out and be grateful about it. I know how lucky I am. These meds differ widely in cost, too. There are plenty of people out there without my insurance who probably can't afford to take them all. I wonder where chemo starts and stops for them. And if some of them are sitting beside me in the waiting room.

Today, as Andrew and I wait for my latest appointment (it's unscheduled, but my insomnia is getting the better of my drugs and I need something different) we look around and play our game of trying to guess who is sick and who is well. Is it the father in his fifties or the daughter in her twenties? Is it the young woman with the hopeful smile or the worried husband sitting next to her? It's not often easy to tell; either the disease or the treatments don't show yet. How well are they really doing? And, aside from the flood of drugs their different cancers call for, are they getting all the care they need?

Take the old man in the corner of the waiting room, for instance. He's come alone. In way too loud a voice he engages the stranger next to hIm, a big guy in a black leather biker jacket and a tie-dyed bandana, who looks wasted with fatigue. The old guy can't stop talking. He goes on and on about his treatment, pulls up his sweatshirt to show the scar on his stomach from an earlier surgery, shouts hello to a passing staff member like a lifelong friend, and jiggles in his seat like a nervous breakdown trying to impersonate a human being. The biker tries to pay attention and show the old man some respect, but he's in a lot of pain and his eyes keep drifting down to his banged up leather boots and the big,

exhausted, body rising from his feet. Will someone on the staff get to listen to the old guy so he doesn't have to yell to a room full of strangers? Will a good nurse get to help the biker feel a little better by encouraging him to talk about the pain?

I've been lucky here, too. The care I've gotten so far at the Yawkey Center has been gentIe and kind. Dr. Jeremy, who's been over the road I'm facing plenty of times before, makes me feel that my journey is the most important he'll ever take; the lovely Nurse Ann delivers my infusions with soft hands, tolerates my jokes and, when I talk to her, looks right into my eyes; Roni, the Nurse with the warm, Ashkenazi smile and Brooklyn accent who gives me my Neulasta shot, has got to be a distant relative; the bright and booming Nurse Practitioner Jill, who watches my bloodcounts, monitors my side effects, and authors my prescriptions, brings out a playful gruffness in me that makes me feel better. I have a $50 bet going with her I'll be her only chemo patient to hold on to his hair. A bet I'm losing. On my second visit a few days ago, I lowered my head at her like a battering ram. "This hair ain't goin' nowhere," I said. She scooted over in her office chair and touched the back of my head. "Feel that?" she said, holding up a tuft of maybe fifty or sixty of my hairs. I was dumbfounded. "Didn't think so," she chortled.

Even David the receptionist, a former computer whiz from Ghana, who checks in at least fifty anxious patients a shift, recognizes me and knows I like to banter to feel okay. The friendly way he puts on my plastic ID and then quizzes me on my birthdate (a mandated procedure to make sure they're treating the right guy) feels like a favor: I get to remember I've been around a while and I'm still here.

Given the stories you hear about hospital medicine, these people are a miracle. Yesterday Harriet's older brother David, a psychiatrist, dropped by with his wife Ann. He told us a story about a professor at Harvard Med who gave her students an assignment totally off the books. She instructed them to go to a

drugstore after class and buy a box of Tic Tacs. One third of them was to take two Tic Tacs once a day; one third was to take two Tic Tacs every other day; and one third was to take two Tic Tacs every morning and three additional Tic Tacs every other evening. At the end of the month she asked each group to report how well they had done. The degree of full compliance was zero. Some said they didn't have the time; one or two said they didn't like the price of Tic Tacs or the taste; the majority had forgotten or gotten confused at least half a dozen times. Not one future doctor managed a task he expected his future patients to handle without help. Presumably they learned what it's like to be on the other end of a prescription, but how many of their classmates graduated without knowing what it's like not just to treat someone's illness, but to stand in his shoes?

When I had a quadruple bypass operation four years ago, I was told I'd been assigned one of the best surgeons in the business; he'd done this sort of thing thousands of times before. "You sure you got the right guy?" I joked, as they wheeled me into surgery. If he answered, it was after the anesthesia. I didn't see him again for six months. I still have trouble remembering his name.

Not long after that, as part of a series of stories I was producing for public radio, I interviewed a number of doctors about the patients from whom they'd learned the most. They all had vivid examples of relationships they never forgot. "I'm sure they thanked you for being their doctor," I said. "Did you ever thank them for being your patient?" None of them had; no one had taught them that taking care of someone works both ways.

Maybe it's not the doctors' fault; maybe the gifts of imagination and compassion come with the disease. One week of chemo and I already feel it; there's something about cancer that spreads to everyone around the person it strikes, and helps them connect.

It's hard work letting each other be scared. Harriet didn't come with us today: hospitals terrify her. They leave her feeling helpless to protect the people she loves. It's taken cancer for her to realize it's okay not to be perfect and for me to see I don't need to turn to her every second, that her safety is part of my own peace of mind. She doesn't take me to the hospital, but she finds someone who can and she welcomes me home and, with her calls and her emails, she gets the word out and surrounds me with our friends.

Mar 6, 2009, at 12:08 PM. dear all dear ones,sorry about the mass email, etc. some of you may know some of this.

here's the medical part. don't expect me to get it all right. when it comes to that kind of information, well, you know about the seven kinds of intelligence? in the medical area my IQ is in the room temperature range.

tony has cancer. it came on fast and furious about eight weeks ago with a swollen lymph node I called his John McCain imitation. we found out a week ago monday. he is in pain—bedridden—and is exhausted. after he begins chemotherapy next week the pain should lessen and the fatigue will trade up from that of the disease for that of the treatment. he has a very good chance of going into remission, and a better than even chance for cure—five year and up survival. if untreated you can look it up.

it's lymphoma. non-hodgkins. follicular (i heard that as funiculi as in funiculi finicula, a song we sang in grade school). stage 3 of 3 stages, 3a not 3b which is more advanced. any more than that and I'll be wrong, I guarantee. the preceding may sound dire, but one of my doctor brother's reactions was "WHEW" exclamation point (can't find it in the dark and tony is sleeping next to me so I can't turn on the light) and the other, who came with us to see Dr. Abramson today said the news and treatment details were about what he expected and that he is optimistic.

By all accounts Dr. Abramson is the greatest doc of all time for this and on speaking terms with God. He seems very thorough and humane, and his ears stick out like Barack's, so what more could we want?

tony starts chemotherapy next week and it'll be done eighteen weeks after that. i learned a few decades ago that you might as well hope because then your days can be happy ones. if things turn out badly you are just as disappointed as you would be if you anticipated the worst, and if they turn out well you have wasted all the hopeless days on the wrong guess—either way. so I'll close with the funiculi finicula song that keeps running in my head and is sung to an italian opera tune i don't know the name of but you would recognize. maybe set in Venice? there are exclamation points after nearly every line but I can't find them in the dark as I said.

Some think the world is made for fun and frolic,

and so do I, and so do I.

Some think it well to be all melancholic,

to frown and sigh, to frown and sigh.

But I, I love to spend my time in singing

some joyous song, some joyous song.

To set the world with music bravely ringing,

is far from wrong, is far from wrong.

Harken Harken Music sounds afar. Harken Harken

Joy is everywhere.

funiculi funicula funiculi funiculaaaaaaaah

Joy is everywhere

funiculi funicula.

Love,

Harriet

All of us here, present or in spirit, with or without a bracelet, sick or well, are in the land of cancer. Walking it together. Trying to take good care of each other. Doing the best we can.

Photo #2: Berlin, Krankenhaus Friedrichshain, Stationsschwester,

from the Bundesarchiv

published under the Creative Commons Attribution ShareAlike 3.0 Germany License.

Remission: Day 7

next >

< previous