103: Scenes from A Transplant

Ira Glass

Before he got sick, he pictured the world this way. There are the people who are healthy, like him, and people who are sick, other people. And unconsciously, as we all do, he drew a line between the two groups, the two countries. Then when Paul Cowan was diagnosed with leukemia in 1987, he was struck with the fact that these are not, of course, two different populations, the sick and the healthy. Instead he wrote, "The world is composed of the sick and the not yet sick."

He published an account of his illness in The Village Voice. "I want to describe some of what I've seen during the voyage I've made, the journey from being a person who took his health for granted to one who's trying to survive a life-threatening illness. I want to chart some of this wilderness for others who will be here one day." Well, that's the mission of today's radio program, because all of us, you and me both, if we're lucky, if we don't die when we're young, this is where we're heading, heart disease, cancer. Men have a one in two lifetime chance of getting cancer. For women, it's one in three. If you're a man hearing the sound of my voice right now, I want you to look at yourself for a moment. It's you or me, man. Odds are one of us will get it. Or we'll both get it. Two other guys will go off scot-free.

So let us chart this terrain where, if we all live long enough, we will be entering. Cowan writes, "During the past five months, I've learned that there's a land of the sick. When you receive a passport, an unwelcome diagnosis, you learn that the land has its own language-- medical terminology-- its own geography-- hospitals, outpatient clinics, blood testing labs, doctors' offices-- its own citizens-- other sick people-- its own pantheon of heroes and authority figures-- doctors, medical researchers, hospital administrators-- its own calendar dictated by the changes in one's body or by the results of medical tests."

When you're well, it's hard to remember what it's like to be sick. And after just a brief time in the hospital, Cowan found it hard to remember what it was like for him just weeks before to be active and self-sufficient. His picture of himself changed. He struggled to retain ties to the land of the healthy, to see himself as an exile who would return one day. But he did not return.

Well, from WBEZ Chicago and Public Radio International, it's This American Life. I'm Ira Glass. Most weeks, of course, we bring you a variety of different stories on some theme. Today we bring you just one story about one person's journey from the world of healthy people into the world of sick ones. Today on our program, Scenes from a Transplant.

Ira Glass

In 1995, Rebecca Perl had a new baby boy that she and her partner, Tom, named Griffin. She was a health science reporter with National Public Radio in Washington, D.C., where she'd just won a Peabody Award for an investigative series about the tobacco industry. She did a lot of stories about doctors and medicine. Then she was diagnosed with non-Hodgkin's lymphoma and entered the medical world as a patient. She had six months of radiation and chemotherapy. It didn't work. So in the winter of 1996, as a last attempt to save her life, she and Tom traveled from their home in Maryland to Omaha, Nebraska, to the University of Nebraska Medical Center for a bone marrow transplant and another round of chemotherapy, a round of chemotherapy as much as 10 times stronger than the original. Dan Collison, a friend of theirs and a radio producer, went with them, and he documented what happened. He also interviewed Rebecca a year later. This is her story.

Rebecca Perl

There are at least three reasons why I was supposed to be exempt from getting seriously sick. First, Tom, my partner of 10 years and the father of our son, Griffin, had a kidney transplant in 1988, so he's supposed to be the one with the health problems in our family. If I ever envisioned myself in a hospital, it was standing at his bedside. Second, about six years ago, my older brother Josh was diagnosed with leukemia. And I don't think anyone expected two serious cancer patients in our family. Third, I'm a health reporter, and though my focus has always been on patients and how they're affected by our health care system, I never thought I would end up as one of these people.

Maybe it was a little crazy to drive all the way to Omaha in the dead of winter, but I hate to fly, and Tom likes road trips. I think we were determined to make the trip fun. Driving would give us a sense of where we were going. Plus, we got to stop at The Waffle House.

For me, it was the worst part, having to give myself shots. For one thing, it hurt. And it was a symbol of what I was going through.

December 1. After three days on the road, we make it to Omaha.

Rebecca Perl

I'm feeling pretty rotten from the ill effects of my final round of chemotherapy back in Washington. They messed up at the hospital. The line that was supposed to administer the chemo wasn't in the right place, so the drugs went into my belly instead of my bloodstream. Because of this, my bladder hurts and I'm tired. And I'm about to embark on a nasty, exhausting journey. I feel as if I need more strength, but here we go.

The first week in Omaha felt like boot camp. I shuffled from one test to another.

Rebecca Perl

Endless poking and prodding.

Rebecca Perl

Kathy Byar was my nurse coordinator. She seemed more interested in keeping me on schedule than in what I was going through. We called her my drill sergeant.

Rebecca Perl

I'm a medical reporter, so I was used to asking a lot of questions. And maybe they just weren't used to pushy New Yorkers in Omaha.

And I didn't like Kathy's cheerleading.

Rebecca Perl

I just wasn't in the mood, you know? I'd been through a lot already. And I was tired. I remember she would say, positive attitude, positive attitude. And I just felt like hell, you know? I had a positive attitude the first time around, and it didn't work. I mean, now I was going through something even worse. And it was hard for me to keep positive.

Rebecca Perl

One coping mechanism I did have was to act like a health reporter. I was obsessed with the numbers. It was really important for me to know the odds that the transplant would work. Those odds were about 50-50. So sometimes, sitting in a room with other patients, I couldn't help but think that only about half of us were going to make it. And this made it kind of hard to get close to people. But Graham and his family was an exception.

Rebecca Perl

Graham was a young father facing worse odds than me.

Rebecca Perl

His wife, Lorraine, was playing the support role and caring for their 9-month-old redheaded son, Thomas. Even though I admired Lorraine for being able to be a mom there at the hospital and even though Thomas made me miss Griffin, I was glad Griff wasn't there. He was older than Thomas. He was nearly a year and a half. I was afraid that if he were there with me, he would understand too much. And I didn't want him to have to understand anything.

So I settled for the occasional phone call.

Rebecca Perl

December 10. We get some bad news. The CAT scan shows the most recent round of chemotherapy back in Washington hasn't shrunk the tumor nearly at all. Julie Vose is my doctor in Omaha.

Rebecca Perl

The good news is I'm actually feeling much better. So that night, we celebrate.

We're even out at a restaurant. Not just any restaurant, but a find of a restaurant, this Catfish Lodge here in Omaha, with the white albino catfish in the tank in the middle. I'm actually feeling good tonight. It's like a miracle. I haven't felt like this. I'm not, like, crying or in pain or something.

Two days later, I begin the Omaha chemo.

The American Cancer Society offers classes in how you can look better and feel better. And though it sounded hokey at the time, now I understand why they do this. Getting sick really played havoc with my body image. I felt as if my body had betrayed me like a separate person I couldn't trust. My sexual desire went out the window. I figured I wouldn't mind losing my hair because at least it wouldn't hurt. But looking at myself in the mirror was like looking at a Holocaust victim, all skin and bones. Actually, I've always been tiny and scrawny, but I never minded before. So I avoided mirrors and wore a hat even when the weather got warm. I did break down and let Tom style the little bit of fuzz that was still left on my head.

Rebecca Perl

The blue chemo hasn't shrunk the tumor either. So finally it's time to get on with the bone marrow transplant.

Rebecca Perl

The consent form is a reminder of what I'm in for. It lists all sorts of nasty things that could and sometimes do happen when you have a bone marrow transplant-- kidney failure, liver failure, heart failure.

Rebecca Perl

It didn't help to see the transplant patients who were a week or two ahead of me. They had just been where I was going, and they looked so weak shuffling into the clinic. But our friend Graham had his transplant two days ago, and he seems to be doing pretty well.

Rebecca Perl

People on the transplant unit seem to fall into two groups. There are the ones who get their chemo and get out, and there are the ones who get infections and end up on respirators. This winter, a lot of patients have gotten influenza. They're on respirators, and they're taking a long time to recover. There is a shortage of beds, so I wait, spending most of my time inside the clean, cozy apartment we have rented. I sit on the rose-covered couch and watch the sparrows out the window. It's very cold.

Rebecca Perl

As we wait, I'm thinking about what's going to happen. Even though they call it a bone marrow transplant, which conjures up images of long, dagger-like needles being jabbed into the spine, actually, they collect the bone marrow, or stem cells, from my blood with a contraption much like a dialysis machine. The machine borrows your blood, culls it for stem cells, and then gives it back. It's the stem cells that produce red cells, white cells, and platelets, all of which will be wiped out by the high doses of chemo. Dr. Ruth Kessinger pioneered the treatment in Omaha.

My room looks like you could wash it down with a hose, like a vet's examining room. It's an awful mustardy yellow. It overlooks a graveyard. I'm here for five days while they pour deadly medicines into my veins.

In the hospital, there's the official information that the staff doles out, and there's the unofficial grapevine, tips and advice that patients share with each other. From the veteran patients, I hear that the University of Nebraska Medical Center doesn't like to give out Zofran, an anti-nausea drug that's very expensive but works like a charm when you're getting chemotherapy. So I start to insist on it to everyone I see. I tell the nurses--

--the resident--

--and the head doctor.

Despite my requests, my demands, my begging, the first night, they fail to give me Zofran, and like Graham, my jaw stiffens up, a side effect of a cheaper, less effective anti-nausea drug. It's a reminder of what it means to be a patient. You can ask, but sometimes you have very little power.

During my high dose chemo, I find out that Graham is back in the hospital on a ventilator. They think he has pneumonia and sepsis, an infection of the blood that is common in hospitals and quite serious for transplant patients. Tom and Dan keep giving me updates about Graham's condition, but I don't really want to know.

The staff really did try to help me cope, and I did appreciate how genuinely nice Midwesterners are. But sometimes I just couldn't get with the program.

What worked for me was to work. One of the reasons I wanted to do this documentary was to have a distraction. It was a way to think of myself as a journalist, a working person, as opposed to somebody who was going through a really terrible, grueling medical ordeal. As a reporter, I had learned to be skeptical about medical breakthroughs and miracles, but as a patient, I had to be a believer. So I put my faith in the science, the numbers, the statistics. And for support, I had Tom, who I call [? Zuli, ?] and he was a huge comfort to me.

Somewhere along the line without saying anything, I think we sort of decided when I got sick or something, we just sort of called a truce or something, each of us did. We almost never fight now. Both of us pretty much kind of let things just slide. If I'm pissed off about something, I just sort of say, oh well. He does the same, I think.

Of course we did have our moments.

Rebecca Perl

January 16. My five days of chemo are over.

January 20. It's a big day for Bill Clinton and for me too. He's being sworn in for his second term. I'm getting my stem cells back. They call it day zero because the recovery starts here. Tom and Dan keep trying to get me to say something profound like, getting my stem cells back is like getting my life back. It's true without these stem cells I would die. The chemo wiped out my body's ability to make blood cells. But I'm feeling too lousy to wax poetic.

Rebecca Perl

It's all very anticlimactic. Kathy brings my stem cells up from the deep freeze in a Playmate cooler like she's ready for a beer at the beach.

Rebecca Perl

She thaws out the bags of stem cells like you would a frozen chicken breast and infuses them back into my body through the catheter.

Rebecca Perl

I'm groggy and half asleep for most of it. When I come to, I hear Clinton.

Rebecca Perl

That night I feel a little better.

But over the next few days, as the chemo destroys my immune system, I feel as rotten as I've ever felt. This is rock bottom. And without the energy that comes from blood cells, I feel fragile, anxious, and empty.

There's some comfort in knowing that I'm supposed to feel this way. The chemo can't distinguish between healthy cells and the cancer, so it wipes out everything that grows fast-- the lining of the digestive tract, the blood cells, hair follicles. One patient who has just been through it assures me it will pass.

Rebecca Perl

Dawn is a couple years older than me and has a 10-year-old. Looking at her is like looking in a mirror.

Ira Glass

More of Rebecca Perl's story in a minute, from Public Radio International, when our program continues.

It's This American Life. I'm Ira Glass. Most weeks on our program, we bring you a variety of different kinds of stories. Today, we're dedicating our entire program to just one about what it's like to be treated for a life-threatening illness. NPR health sciences reporter Rebecca Perl moved to Omaha for extra intensive chemotherapy and a bone marrow transplant.

Though my recovery was supposed to be outpatient, two days after the transplant, I'm back in the hospital.

That has stayed with me in a way that nothing else has because it's like losing your innocence or something. I mean, it just seems like this weird thing. My heart isn't supposed to ever stop, and my heart has been stopped. And to me, that represents some sort of loss of innocence, something that just should have never happened. And it sits badly with me. It's almost like everything else is OK, but that really gets me somehow. I wish that hadn't happened.

Rebecca Perl

Four days after the transplant, and I'm about to go home to our apartment. I'm busy worrying about Tom having to give me antibiotic injections at home, except I don't have to worry about that because they tell me I have something called RSV.

Rebecca Perl

The treatment requires I stay in the hospital isolation room for a week. And for 18 hours a day, I have to wear this ridiculous-looking and very uncomfortable mask strapped to my face so I can breathe in an aerosol medicine. Here's something that people forget. It's not just physically grueling being sick. It's boring.

Just down the hall, Graham has been on a respirator for more than a week. After Graham's 8-year-old old daughter, Kelli, plays her flute for him, he seems to show some slight improvement, but the doctors say he's still in critical condition.

Rebecca Perl

Finally a piece of good news. Dr. Armitage, the head of the Omaha transplant program, drops by my room to tell me that the stem cells they transplanted into me are growing new cells.

Rebecca Perl

Day 11. They've just let me out of the hospital, and all of a sudden, it's over. Just as sure as I was locked away, they're going to let me go.

Rebecca Perl

I was like, wait a second. I haven't won anything here. We don't know whether this worked. We know I got through this, but that's little consolation. The really big prize here, the car, the trip to Hawaii, is did the cancer go away? And we didn't know, and we weren't going to know for months. And so it was all very weird, everybody congratulating you and patting you on the back and saying good for you and hey, it's all over now. It seemed very strange to me.

Rebecca Perl

For the first couple weeks I was in Omaha, I felt like I was on an assembly line. You come in through a revolving door. You get on the line. You get your catheter. You get your stem cells removed. You get your high dose chemo. You get your stem cells back. So now I was leaving, walking fast, head up. Suddenly I was the veteran, the old pro. And there was a scared old man with his family who had just arrived for his transplant, looking shaky and small as he sat huddled by the door.

Then we say goodbye to Lorraine.

Her husband, Graham, is still on a respirator. She tells us that she's losing hope.

I tell her to be optimistic, but I don't know why I'm saying this. In my heart, I know she's right to prepare herself for Graham's death. It's not a good scene. Here I am leaving, getting out of town alive, and Lorraine's world is falling apart. I feel terrible for her, but mostly I want to get the hell out of here. I want to run. Still I hug her, and I tell her not to lose hope.

I want to believe, and I think I basically do believe that this whole ordeal did not impact Griffy in a bad way. And I think that it didn't.

February 3. I've been home four days when I call back to Omaha to see how Graham is doing.

Springtime. The buds on the maple tree outside our bedroom window have begun to sprout, and so has my hair. I call this tree my hair tree because since I've been having chemo, my hair has fallen out and grown back at the same time the tree has lost its leaves and sprouted new ones.

Rebecca Perl

April 15. Three months have gone by, and we're back in Omaha. It's tax day and the day I find out if my transplant worked. This time we're only here for two days, and Griffin is with us.

Rebecca Perl

The news is good. Dr. Vose tells us the tumor has shrunk significantly.

It's funny when you realize you're going to get your life back, that your job isn't just fighting a disease anymore. Suddenly you have to live. Egad. You can't just sit around and wait to be better. You've got to go back to work or at least do something. Study biology, write a book. That was very strange and difficult for me at first, because for the past year and a half, I'd been doing very little. Reading, resting, looking through catalogs. I was scared to go back to work, to face getting dressed every day, to be busy, on deadline, frantic, to let my orderly life and my time with Griffin get away from me.

One year since my transplant. The tumor has shrunk to the size of a normal lymph node, suggesting the disease is gone. I'm back at work, but my energy is still low. I'm tired a lot, and when Griffin gets sick with a cold, I get sick too. And I get it bad. Still, we go on vacation. Tom and I went to Rome this fall. We see friends, make dinner. We even fight. And though my life is pretty good, I don't feel ecstatic, but I feel content. And if I worry, I worry about life returning to the way it was before I got sick.

Ira Glass

Scenes From a Transplant was produced by Dan Collison with help from Tom Jennings, to whom this story is dedicated. The story was originally shot on video. Dan Collison is currently looking for funding for a video version of the documentary. Our program was produced today by Alix Spiegel and myself with Nancy Updike and Julie Snyder. Senior editor Paul Tough, contributing editors Jack Hitt, Margy Rochlin and Consigliere Sarah Vowell. Production help from Laura Doggett and [? Sahini ?] Davenport.

This week we are pleased to announce that This American Life now has a website on the internet. The address, www.thislife.org. That's thislife, one word, no space in between this and life. www.thislife.org. On the site, you'll find sound files of most of our programs to listen to whenever you wish. Thanks to Elizabeth Wasserman and KCRW. If you'd like to buy an old-fashioned cassette of our program, call us at WBEZ here in Chicago, 312-832-3380. 312-832-3380. Our email address, [email protected]

This American Life is distributed by Public Radio International.

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WBEZ management oversight by Torey Malatia. I'm Ira Glass, back next week with more stories of This American Life.

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