Cancer Country: A Survivor's Memoir

Cancer Country

A SURVIVOR’S MEMOIR

Chet Skibinski

Contents

PREFACE

CHAPTER 1: A PHONE CALL

CHAPTER 2: YOU’VE ALREADY GIVEN UP

CHAPTER 3: AN ALIEN INVADER

CHAPTER 4: OLD MOVIES AND RAZORS

CHAPTER 5: TABLOIDS

CHAPTER 6: THAT POOR SON OF A BITCH

CHAPTER 7: SARAH

CHAPTER 8: BREATHE IN …HOLD YOUR BREATH

CHAPTER 9: LYMPH NODE

CHAPTER 10: A MIDWAY POINT IN THE GLASS

CHAPTER 11: ONE IN A HALF MILLION

CHAPTER 12: FINAL TESTS

CHAPTER 13: GOOD ENOUGH FOR LANCE ARMSTRONG

CHAPTER 14: ANGER

CHAPTER 15: JEANNE’S TERRIBLE LUCK

CHAPTER 16: MUSIC

CHAPTER 17: ROLE MODELS

CHAPTER 18: CHEMO INVADERS

CHAPTER 19: CAR

CHAPTER 20: HAIR

CHAPTER 21: NURSES

CHAPTER 22: GROUP SUPPORT

CHAPTER 23: SIR GAWAIN

CHAPTER 24: DON’T WORRY

CHAPTER 25: INDIAN SUMMER

CHAPTER 26: THE ELECTIONS

CHAPTER 27: STEPFATHER

CHAPTER 28: SNOW

CHAPTER 29: NEW YORK

CHAPTER 30: JEANNE

CHAPTER 31: MEMORIES

CHAPTER 32: IT’S BACK

CHAPTER 33: CERTAIN ADVANTAGES

CHAPTER 34: LYING THERE SCREAMING

CHAPTER 35: JUST A QUICK JAB

CHAPTER 36: FEET

CHAPTER 37: HURDLES

CHAPTER 38: REST STOP

CHAPTER 39: THE FOREIGN COUNTRY

CHAPTER 40: SIN AND DESPAIR

CHAPTER 41: HERNIA

CHAPTER 42: NOT UN-OPTIMISTIC

CHAPTER 43: ONE OUT OF FOUR

CHAPTER 44: DONOR FOUND

CHAPTER 45: A MODEL PATIENT

CHAPTER 46: IT WOULD HAVE HAPPENED ALREADY

CHAPTER 47: HEART

CHAPTER 48:THE SMALL THINGS

CHAPTER 49: POST-OP DAYS

CHAPTER 50: BRAVERY

CHAPTER 51: WORRIES

CHAPTER 52: BECOMING NORMAL

CHAPTER 53: AUNT LAURA

CHAPTER 54: ANYWHERE IS FINE

ACKNOWLEDGMENTS

Copyright

To my wife Linda and my daughter Sarah – it’s impossible to thank you enough.

PREFACE

This is not a handbook on how to deal with cancer, nor is it a Message Of Hope (though, on the positive side, it’s also not a Message Of Despair). It’s not a message of anything.

Discovering you have a potentially-fatal cancer is much like suddenly being thrust into a foreign country that was next door all the time. The people speak English, the TV programs are the same, the neighborhood looks familiar … and yet everything is somehow stranger, more alien, and a little frightening. You deal with many people (especially medical workers) who will eventually become your friends in this new country, and you even take steps to learn a new medical language. But the most notable effect is on one’s emotions, as you try to handle a unique sort of culture shock.

This is an account of a kind of trip. Trips frequently do not go in straight lines, and this trip had dead-ends and reversals and surprises and many digressions. In a way, this is a guide through my foreign country. It’s an armchair travel guide, safely away from the real thing.

You’ll hear about sleepless nights and irrational rage at a Safeway check-out, about The Creature from the Black Lagoon and Porsches, about fear of needles when you have to do the injecting yourself, and the expressions on doctors’ faces when they’re clearly uncomfortable with the notes in their hands. Also: Sir Gawain and the Green Knight, the Oregon coast, the advantage of buying Gillette razors at Costco, Hells Angels, hernias, rest stops, Lance Armstrong’s doctor, mink stoles, the I-Ching, and Clint Eastwood.

Mostly you’ll hear about me – a fairly average, healthy, law-abiding man who was 66 years old when he was told that he now had a very aggressive, very deadly form of cancer that only one out of every half million Americans get, and how I reacted (I didn’t react very well).

I learned that you don’t deal with cancer in a straight line. You don’t Bravely Battle it with a series of scheduled appointments in which you stoically listen to stoical doctors, while everyone around you Cares (quite honestly, sometimes you don’t care if they care). Dealing with a serious, life-threatening cancer in Stage 4 means a meandering, scary, frustrating, infuriating, confusing trip. OK – it’s positive and uplifting in some ways, but not too many ways. You’d certainly prefer positive and uplifting experiences that have absolutely nothing to do with cancer.

When we were in Costa Rica, over a decade ago, my wife Linda and I took one of those gondola-like contraptions on cables that cross over the tops of the rain forest. This late-morning ride was slow and quiet, almost stately; the rain forest was heavy and warm only a few feet below us, and the little car that we were in moved at the pace of gentle walking.

We had hoped to see animals. Instead, we saw a few butterflies and a tree branch that moved because the wind blew it; that was sort of the high point of the ride, except for a lizard who was sleepily pasted to a tree branch, oblivious to the world. Later, the guide admitted, a little sheepishly, that virtually all the animals were nocturnal, that you can’t see them in daytime.

So I asked: OK … though … when it’s dark at night, you can’t see them then either, can you?

He admitted this was true. But just before it gets really dark, they start to come out. You can see some of them then. Not all of them, but some of them.

Maybe this cancer memoir is sort of a journey on top of that Costa Rican rain forest when it begins to settle into darkness … you don’t exactly see every single animal, but you’ll see many of them, and you do see many more than if you had taken this ride at noon, or if you had never taken this ride at all.

CHAPTER 1:

A PHONE CALL

On May 15, 2008, I stepped into the foreign country, and to enter it I simply picked up my phone. A voice-mail from my doctor. She’ll contact me later. Something about a recent blood test.

For the next six hours I was in that kind of uncertain limbo of border crossings and international airports, and then in early evening, my doctor called.

Phone calls from doctors after their regular hours usually indicate two things:

First, the doctor is hard-working, considerate, diligent, and cares deeply about his or her patient.

Second, you’re screwed.

Both of these things were true. Dr. Jones told me that my routine blood test this morning revealed a problem. Evidently, my body was producing six times as many white blood cells as it does in a normal person, and so the chances were that I had lymphoma.

Wait a minute … that’s cancer, isn’t it? I asked. You see, cancer isn’t permitted in my life. I’m 66 years old. Maybe cancer can come back in 20 years and this cancer and I will discuss it then, but not now. This cancer is way too early and so it doesn’t involve me now at all.

There are many different kinds of lymphoma, Dr. Jones said. Dr. Tori Jones is a pretty, young-middle-aged woman who is patient and happy and has a naturally good sense of humor. She occasionally hugs you and she always makes you feel good. Tonight she was just as patient as always, only for some reason she didn’t seem to be able to quit talking about lymphoma, which is kind of what I wanted her to do.

I stopped smoking almost 40 years ago, I said. I still remember – it was February in 1970 – I stopped smoking then.

That’s good, but – well, smoking isn’t really linked to lymphoma.

I paced around our deck – a warm evening in mid-May – holding the phone, feeling more and more mildly crazed. I wanted to elaborate on the smoking thing, how my parents had died of smoking-related cancers, and – would this help? – I could almost remember the actual date in February of 1970 when I quit – and the brand – Tareyton – I could remember that, too. Tareyton – I’d rather fight than switch – those were the Tareyton ads in the late ‘60’s.

There are several tests we’d like you to have, she said, And I’ll start to get those arranged.

Tests?

As she began to describe a few of these, I was trying to concentrate. I wanted to be a good patient. I wanted Dr. Jones to be proud of me. But she just didn’t understand – not only my mother and my father, but one of my aunts and one of my uncles died of cancer, too – but it was because they were smokers. And I quit 40 years ago.

… if that will work for you?

I’m sorry?

For the CT-scan. That’s probably the earliest appointment I can get, if that will work for you?

That’ll be fine. Yes, thank you. That’ll be fine. Then I realized I hadn’t been paying attention. What day was that again? What kind of a scan is that? Just a second, this pen doesn’t work.

So I was in this foreign country now for sure. I would learn that it was a country nearly identical to my own – like one of those old science-fiction stories where the astronauts travel a billion light years away and land in a place that looks exactly like Ames, Iowa.

My house still looked the same, Linda was still in the kitchen, no thunderstorms had unexpectedly arrived, nor any earthquakes. But now, in the space of a few hours, my perception of everything had changed. Everything in my previous 66 years of life was in a different country, and the me that was in this kitchen now, notching this phone back onto its wall holder, starting to tell Linda about this phone call, was certainly a different person, and this was an alien, foreign world.

I had crossed some border, had my passport stamped, been hustled by swarms of taxi drivers, and now was heading somewhere down a road in early evening in a ratty 30-year old Nissan Sentra, with this foreign driver who spoke an incomprehensible language, cocking his rear-view mirror so that he could see me slumped in the back seat, glancing up at his mirror from time to time, grinning, speaking some kind of words, laughing a little, speeding up, passing cars, passing bicycles, glancing up again at the mirror. Where you want go? he was saying. You want go somewhere, tell me where you want go.

CHAPTER 2:

YOU’VE ALREADY GIVEN UP

Of course, I didn’t sleep that night. Sometimes people say I didn’t sleep at night, but what they mean is that they tossed and turned until 3 or 4 AM, then sank into a deep, troubled sleep for an hour, and then woke up again. But I truly didn’t sleep a wink, eyes open, staring at the ceiling, and was finally out of bed around 5:30.

A digression:

When I was in high school in the late 1950’s, we didn’t have many audio-visual options. But one educational film I still remember was produced by the Corning Glass Company. It probably had a simple title like How Glass Is Made, and it was short, in color, and interesting. Here’s the part I still remember: a beautiful piece of glass takes center stage for the camera, like a massive wine glass, a globe that smoothly slims down to a tiny, delicate stem. Then a technician takes a pair of pliers and pinches the very bottom of the stem, and the whole glass shatters – just like that. The narrator explains why – and I’ll never remember his explanation – but I can still see that little pinch and the whole glass above it exploding.

So how can this ‘50’s educational film about glass possibly relate to cancer? Well, first, I was quickly beginning to discover that when you find out you have cancer, most everything relates to cancer.

For me, this old Corning Glass movie was about that small pinch affecting the whole. The prick in your arm that leads to a blood test, that leads to a test result, that leads to a call from the doctor the next evening, that utterly changes your life. Simple as that. It took about 17 hours, from that nurse’s phone call yesterday afternoon, to my doctor’s call at dinner hour, to me lying in bed at 5:30 AM this morning.

Then the phone rang suspiciously early, around 7:15, and even as I picked it up, I knew who it was: it would be my doctor, Tori Jones, telling me that a horrible mistake had been made, that those lymphoma lab results were for a different patient, that I was essentially healthy except for a minor blood pressure problem, and that she was so, so sorry to have upset me by phoning last night.

All this thinking in three seconds.

When I picked up the phone, I sounded almost jaunty, relaxed, confident – Hugh Hefner in his perpetual bathrobe – ready for the good news and the apologies, which I would graciously accept – I even had a sentence or two in mind that would begin the gracious response.

It was a wrong number.

There are supposed to be a hundred warning signs of cancer, and I had had none of them. No loss of weight, no sweats at night, no weakness, no nausea, no anything. I felt fine. Except for the itching, which had started two months before. My skin seemed to have developed a crust, and the crust was maddeningly itchy at times, especially in the middle of the night, when I’d jump out of bed, go into the other room and use a sharp hair brush to blissfully scratch and scratch. It drove me crazy, but, as I said to Linda, At least it’s not exactly a life-threatening disease. An easy, obvious joke, and we both smiled. I mean, what are they going to say on my obituary? That he fought a courageous battle against itchiness but then finally succumbed? I thought this was very witty.

But, Itching, it turns out, is a big red flag for some kinds of lymphoma. I learned this on the Internet, and checking the Internet is one of the worst things I could have done. Google any word that has to do with a disease and the Internet eagerly pounces onto it like a pit bull, a hundred websites all wanting to tell you how Serious and Horrible and Possibly Fatal this disease is. A few people have survived, but not many. You, of course, have little or no chance, you poor, ill-informed bastard.

I’m not sure why, but one thing I’ve never been interested in is the human body. I’ve never been interested in how bones deteriorate or why the heart begins to yell for assistance, or why skin can only look worse, or why certain organs – the pancreas is a good example – that you’ve never paid even a minute of attention to in your entire life – can suddenly loom up and now determine that you’ll probably die in six weeks.

I don’t read most any medical articles, even in the New Yorker – and yet I read everything else in the New Yorker, including articles two weeks before Christmas that describe the best toy stores in New York to buy dolls.

I realize the human body is an incredibly complicated thing and it amazes me that a doctor can casually touch a finger to an arm or a cheek bone, or squeeze the stomach, or smooth fingers along a thigh, and immediately identify the problem, noting the muscles and nerves and bones that are factors in the pain.

But there’s something about knowing about the human body that’s unsettling to me. Let Sleeping Dogs Lie. If It Ain’t Broke, Don’t Fix It.

Whatever’s going on in my body will take care of itself because that’s the way bodies operate. You have a sore throat, it goes away. You get pneumonia, they have X-rays and then pills. If you fall down, ice packs on the ankle. Essentially, though, the body keeps going for at least 80 years, most likely longer. There is simply no reason to try to understand the million different kinds of cells and muscles and nerves and bones and all the rest that are in your body, and certainly no need to know all that medical Latin. The body will take care of itself. It doesn’t need my mind. Actually, it especially doesn’t need my particular mind, since I gravitate toward suspicion and worry. So eat lots of fruit and vegetables, get daily exercise, don’t smoke, and be willing to put up with the occasional head cold, indigestion, and headache, and everything will stay the same forever.

Now I was faced with doing what I truly hated: reading medical facts about