Transcript

103:

Scenes from A Transplant
Transcript

Originally aired 05.29.1998

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Prologue.

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.

Act 1.

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

Daddy and Dan and I are going away, Griffy, for a little. We're going on a trip. You're going to stay with Grandpa and Grandma, with Pop-Pop and Grandma, OK?

Sometimes I worry that Griffin's going to fall in love with some woman who just lays in bed all the time because that's what he sees his mother doing in the first two years of his life. I mean, he's going to fall in love with some woman who lies in bed and eats bonbons or something, or reads or something, because that seems to be what I'm turning into is this person who lies in bed all the time. Or else I lie on the couch and read him books or something.

"Once there were three baby owls, Sarah, Percy, and Bill. They lived in a hole in the trunk of a tree with their mother owl. The hole had twigs and leaves and owl feathers in it. It was their house. One night they woke up and their mother owl was gone. 'Where's Mommy?' said Sarah. 'Oh, my goodness,' said Percy. 'I want my mommy,' said Bill."

He really likes the owl book, and it makes him feel better that in the owl book, the mommy owl goes away but then she comes back. So I think he understands that. And lots of mothers go away on trips and go off for work for weeks at a time. And I've had to do that. Now the really bad one is I'm going to have to go away for a month or more. And he'll hopefully come visit. But still, it's going to be a really long time. I mean, it happens. And I guess the most important thing is that I get well so that he can have a mother.

Tom Jennings

OK.

Rebecca Perl

OK.

Griffin

OK.

Rebecca Perl

Bye bye, Griffy. We'll see you soon, OK? Bye bye. You stay with Grandpa and Mama, OK? Say bye bye.

Griffin

[SCREAMS]

Rebecca Perl

OK, OK. You go to Pop-Pop. Want to go to Pop-Pop?

Griffin

No.

Woman 1

Yes. They have to go.

Griffin

No.

Tom Jennings

We'll see you soon.

Rebecca Perl

You're going to go to the park with [? Marta. ?]

Woman 1

Look, Griffy. Bye-bye, Mommy.

Tom Jennings

Bye-bye.

Woman 1

Griffy, bye-bye, Daddy. Bye-bye.

Rebecca Perl

Bye, Griffy. You'll be OK. Bye-bye.

Woman 1

They're coming back. They're coming back. Don't cry.

Griffin

[CRYING] Dada.

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.

Rebecca Perl

And they're off on a big road trip. You got your warm coat?

Tom Jennings

Yeah.

Rebecca Perl

OK, and we got lots of turkey sandwiches.

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.

Rebecca Perl

We're in the bathroom of The Waffle House. Did you lock the door?

Tom Jennings

Yeah.

Rebecca Perl

And I'm going to give myself an injection of Neupogen. It's just like being a heroine addict.

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.

Rebecca Perl

And then the funnest part is you jab it into your leg like so. And then you just push it in. And sometimes it hurts, and sometimes it doesn't. It sort of depends on where you get it in the leg. Voila. And that's it. I used to do it at home when I had to do it for like 10 days. I'd do it at like 7:25, right before Seinfeld. So if it took me more than five minutes to do it, I'd miss Seinfeld. So I'd hurry myself along. Now I'm doing it right before I get to eat at Waffle House. So I give myself a treat afterwards.

Man 1

BLT on wheat.

Rebecca Perl

Mmm! Waffle House. Chicken melt. Oh, boy.

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

Woman 2

Have a seat, and we'll be with you in just a minute, OK?

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.

Woman 3

We're going to do your EKG right in this room.

Rebecca Perl

OK.

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

Man 2

Three more seconds. Keep going. A couple more breaths. Stop. Good. Good test.

Rebecca Perl

Endless poking and prodding.

Woman 4

OK, Rebecca, you're going to feel a poke and a burn. This is the numbing medication.

Woman 5

There's a tiny little poke. I'm sorry. Your skin's a tiny bit tough.

Woman 6

One more to go after this, honey. It's not bothering you, is it? OK.

Rebecca Perl

I'm just tired of being poked and prodded and pricked and achy and tired. This is supposed to be the easy time. I can't imagine it being any worse.

Kathy Byar

Tomorrow-- don't eat or drink after midnight tonight. Tomorrow at 8 o'clock, you'll go down to the first floor of the hospital to special x-rays.

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.

Kathy Byar

You know, I would imagine it does feel like that because you lose that control. All of a sudden, you're coming to a strange institution. They're telling you when, where, and what to do. And as a person that's young, independent, used to having her own kind of control, it's very frustrating.

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.

Rebecca Perl

You've got to get me on a later schedule. I'm too exhausted.

And I didn't like Kathy's cheerleading.

Kathy Byar

Positive attitude. Positive attitude. You're not going to feel sick.

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.

Kathy Byar

You're not going to feel sick. Not going to get sick. Not going to get sick.

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.

Hi, ?] I'm Graham [? Brazier. ?] I'm here for a bone marrow transplant because of multiple myeloma, which is a disease that was diagnosed in May of '96.

Rebecca Perl

Graham was a young father facing worse odds than me.

Graham Brazier

The latest statistics are that three years out from transplant, 35% are disease-free, as they call it.

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.

Rebecca Perl

Hi, Griffy! Hi, Griffy!

So I settled for the occasional phone call.

Rebecca Perl

Hey, Griffy, want me to sing "Macaroni"? I have a little pony. His name is Macaroni. He trots and trots and then he stops. My funny little pony, Macaroni. Do you like that song, Griffy?

I don't know. In a lot of ways, I guess I have kind of removed myself from him, because I know I have to go through this and do this. And it's sort of the last thing I have to do before I can really be with him for real or have the energy for him for real. So a lot of times I don't have the energy for him, and that makes it easier to kind of separate from him.

Griffy, I miss you. I'll see you soon. I love you. I love you, Griffy.

Computerized Voice

Breathe in. Hold your breath.

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.

Julie Vose

Rebecca still has a mass found on her CT scan. So we're going to administer another cycle of salvage chemotherapy that's a slightly different type, to try and reduce that mass further down before she actually undergoes the transplant. And we've found in the past that this is the best way to try and have the best long-term outcome for patients.

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.

Rebecca Perl

They give you four drugs, and one of them is blue. I kind of like the blue one, because it's just so startling. It looks like blue food coloring kind of color or like blueberry frozen popsicle melted.

Man 3

And you said that you dressed accordingly today?

Rebecca Perl

Yes, I wore my blue pants to go with the blue. My electric blue pants to go with the electric blue poison.

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.

Tom Jennings

This is the weapon. It's small but very effective. Let's see. I've got to do a little experimental swatch here.

Rebecca Perl

Don't be doing the top.

Tom Jennings

I'm not. I'm not. I'm not. I'm not. Trust me. Just trust me.

Rebecca Perl

Those are famous last words.

Computerized Voice

Breathe in. Hold your breath.

Rebecca Perl

I just had a CT scan. They're looking to compare the tumor in the chest to how it was in October, see if it's shrunk.

Computerized Voice

Breathe.

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

I mean, it's discouraging that the tumor hasn't shrunk any. I was hoping it would shrink with these last bunch of chemos. I'm just anxious to get done. And I'm hoping it's really going to work. And I'm kind of wondering about what's the chances it's really going to work. They can't be as good as they would be if the tumor had shrunk a lot.

Woman 8

Is it OK if I go ahead and get your consent form signed today, so we're all ready to go when you're ready to go?

Rebecca Perl

Mm-hmm.

Woman 8

OK.

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.

Woman 8

It sounds really scary, and that's because we have to put every little last thing in here that could possibly happen. That doesn't mean it's going to happen. But we have to let you know that's a rare possibility.

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.

Everybody ?] seems to be different. And some people, I understand, end up on ventilators. The worst thing I experienced up there, apart from the nausea, was lockjaw. And that was just a strange sensation, the way your jaw freezes up and your tongue starts sucking down your throat.

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.

Mike Bradley

WOW FM, Omaha-Council Bluffs. Good morning, I'm Mike Bradley. The Omaha metro area, as well as other areas in east central Nebraska, northern Nebraska, and all of southwest Iowa under a winter storm warning for blowing snow and dangerous wind chills, down to 65 to 70 below zero.

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.

Ruth Kessinger

The machine empties the cells into a very important, special bag. We take the bag of cells to the laboratory. And in the laboratory, we freeze them in a liquid nitrogen freezer and save them there. Then the patient can go get his or her high-dose therapy. The high-dose therapy, of course, is intended to kill tumor cells. But the doses are so high that it also hurts the bone marrow. And that's the reason you need to give the stem cells back to the patient so they can grow a new bone marrow.

So as soon as the high-dose therapy is finished, and hopefully the cancer is finished too-- it's been killed-- then we get the cells out of the freezer. We thaw them, and we simply inject them back into the bloodstream of the patient. And like a miracle, these stem cells know where to go. They home right to the empty bone marrow space and begin to grow.

Woman 9

Hi, can I help you?

Rebecca Perl

Hi, I'm supposed to be admitted.

Woman 9

Oh, OK. What's the name?

Rebecca Perl

Rebecca Perl.

Woman 9

Perl?

Rebecca Perl

I think of it kind of like a pregnancy, like having a child, like the birth. I mean, no one can tell you what it's going to be like. You kind of know it's going to be awful, or that's what a lot of people say. But nobody can really tell you what it's really going to be like, and everyone's experience is really different. And it's just sort of like, you don't have a choice. You're just going to do it. It's just going to happen. And I just sort of feel like with this it's the same thing. It's like this momentum, and it's just going to happen, and I'm going to do it. I mean, it's scary, but I'm just going to do it.

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.

Kathy Byar

I would say in the next four days or so, about three to four days from now, she's going to feel pretty sick to her stomach and maybe have some lose stools and some mouth sores developing once all this chemo builds up in her system.

Rebecca Perl

Everybody have fun tonight. Everybody--

Kathy Byar

--Wang Chung tonight.

Rebecca Perl

Everybody have fun tonight.

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--

Rebecca Perl

I'd like to have Zofran because that's worked for me in the past.

--the resident--

Rebecca Perl

But I really do want Zofran, because I know that works for me.

--and the head doctor.

Rebecca Perl

I just feel like I've said this to so many people so many times. I want to get Zofran every day.

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.

Rebecca Perl

I kind of like to be a little bit removed from how everybody else is doing.

Tom Jennings

Why?

Rebecca Perl

Because it's scary. It's hard for me to hear every detail of how everyone else is doing because all that could be happening to me.

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.

Rebecca Perl

Twice, rabbis came into my room and left their business card, and told me if I ever wanted to talk. And it was very awkward because they were there to sort of try to, solicit important things out of me about how I was feeling. And I just didn't want to have any part of it. They kept asking me-- the social worker, when I first went into the hospital, she would say, well, are you involved in any religion? And I'd say, no. And then she would say, well, I don't mean organized religion but just your own spirituality. And I'd say, no. And she'd say, well, what about some sort of mystical or some other culture? Are you involved in-- No. I was just sort of no, no, no to all her questions. And I think she didn't know exactly what to make of that because I don't think almost anybody had ever said, no, no, no to all her questions.

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.

Tom Jennings

If you get upset at me and want me to leave, just tell me to leave.

Rebecca Perl

I don't want you to leave, [? Zuli. ?] But this is not about you, so just keep your ego in check.

Tom Jennings

I'm not talking about my ego. Don't sit there and just sulk and glare at me. Just tell me to leave.

Rebecca Perl

All right, I will.

I just kind of want him to take care of me. And I think he really has sort of, in a lot of ways, or he is learning to kind of just put his ego aside and do it, just kind of take care of me. I think it's really hard for him.

Tom Jennings

She actually said something at that point that was kind of enlightening to me. And that was that maybe she needs somebody to get mad at, to focus her negative or her hostility or her anger about what's happening to her. So that was actually an illuminating moment for me because I can understand that.

Rebecca Perl

January 16. My five days of chemo are over.

Rebecca Perl

You hear that beep? Tee. Tee, tee. Tee, tee. Well, anyway, that--

Woman 10

May I help you?

Rebecca Perl

Can I have my nurse, please?

Woman 10

I'll send her in, OK?

Rebecca Perl

That is the last bag of my last day of the last chemo in this hospital and hopefully ever.

[HUMMING]

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

I feel nauseous. My stomach hurts. I don't feel like I want to do this. I feel too rotten.

Woman 11

This is just dry ice.

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.

Kathy Byar

OK, we've got Rebecca B. Perl, 712792. I'll take 75 for the first hour.

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.

Kathy Byar

There they go.

Rebecca Perl

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

Bill Clinton

Fellow citizens, we must not waste the precious gift of this time. For all of us are on that same journey of our lives.

Rebecca Perl

That night I feel a little better.

Rebecca Perl

I'm feeling well enough to try some Sugar Smacks.

Kathy Byar

All right.

Rebecca Perl

[SINGING] Can't get enough of those Sugar Smacks, Sugar Smacks, Sugar Smacks. Can't get enough of those Sugar Smacks. I could take them home for tea.

So remember, all you cancer patients, when you're feeling awful, try Sugar Smacks. Mmm. It's my food of choice.

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.

Rebecca Perl

Well, it's January 21. It's day one, ie I had my transplant yesterday. Is that right? Isn't it day two by now? Gosh, they're going slow. But I feel pretty crappy. I feel very nauseous. And my stomach is just very churny. Today I ate what I was sure I could stomach, a piece of rye bread and some ginger ale, and I even threw that up. But I would like to say it was almost pleasant throwing up ginger ale. It's a lot better than throwing up some other things I could name, like orange juice. Blech.

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.

Dawn

I thought I was going to die two days ago, and now I feel like-- like I said, as soon as you think it's never going to end, it does get better. I know how you feel right now.

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.

Dawn

Well, and don't you find too that every time you see pictures of your son or whatever, doesn't that make you just even more determined to get better? See, it does me too. Or if I see my daughter, it just makes me more determined.

Rebecca Perl

Right, right. Yeah.

Dawn

It just makes me more determined. Every time I think, oh, God, I feel so bad. I just don't want to go on. Then I just think, oh, what's Jessica going to do without me? Then it's like, oh, I've got to kick myself in the seat and get with it.

Rebecca Perl

I feel that way about the whole fight, that I probably wouldn't fight half as hard except for Griffin. Well, what choice do you have, really?

Dawn

You don't.

Rebecca Perl

I think if my life maybe was different, maybe if there wasn't Tom and Griffin, maybe I would say, I've lived and I've done things, and I just don't want to fight this anymore. I'm tired of it. You know, if you have to keep going through it and going through it. But you can't do that when you have a kid. Or I don't feel like I can do that with a kid. I feel like I have to keep fighting, even though it's a pain in the butt.

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.

Man 5

Do you have any discomfort when you sit forward?

Rebecca Perl

No, I just feel a little shaky. I'm not sure if it's real or just fear.

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

Rebecca Perl

Well, it's day three. And I'm here because last night at about 11 o'clock, I noticed that my heart was beating so fast that when I was laying on the bed, I'd just feel it going thump-thump, thump-thump, thump-thump, thump-thump, thump-thump, thump-thump thump-thump.

Tom Jennings

It was beating really fast. Dun-dun, dun-dun, dun-dun. And I counted like 150 or 160. Her normal is eighty. I said, OK, get dressed. Let's go.

Rebecca Perl

So I just kind of got out of bed and started to come in. And I sat down on a chair in the living room for a minute, but I must have fallen over because the next thing I knew I was on the floor.

Tom Jennings

And then I heard a thud. And I came running out. And Bec was spread eagle on her back, just flat on her back, staring up. And I went and looked in her face, looked in her eyes. And she wasn't registering. And I said, Bec, Bec, can you hear me? Bec. And she just didn't register me. Her eyes were blank. And I was just scared [BLEEP] that something had really happened, like she had had a heart attack or a stroke or something. And then within a couple seconds, she came back. And she registered me.

Rebecca Perl

And then we walked out to the car. And then we drove pretty quickly to the hospital. And suddenly there were like a million nurses and PAs and internal medicine guys all in here hooking me up to these monitors and seeing what was going on with my heart. And it was beating at like 190. But the thing that stopped it was they gave me this weird drug which they just put into your catheter, and it makes your heart stop for like three seconds. And it was a weird, unpleasant feeling, kind of like an electrical feeling right after it, just like electricity going through your body or something. And I felt really weird. And I still think I feel a little weird from that. But that got my heart rate down to like normal, to like 120.

Man 6

Hi, I just stopped by to tell you the results of the ECHO. And I think you already know. There was no fluid around the heart. The valves are normal. The heart function normal.

Tom Jennings

And then by the end of the day, Dr. [? Taryntula ?] comes in, who's a great guy, a sweet guy. And he says, I don't know what problem is. We may never know. Let's just hope it doesn't happen again. And that's where we have left it. And that's completely unsatisfying, you know?

Rebecca Perl

So they don't know. We don't know. They're not even going to treat it, really. I think I'd feel better if they sort of thought it was something and could treat it. You always think medicine is going to be like that, like you'll find the answer and that will be that. But a lot of times you just don't. We're no closer to knowing what the problem is than when we started out, really, except that they think everything's OK. They think it's behind us, and we're not really going to treat it. But I don't know why my heart was racing like that. It was scary.

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.

Kathy Byar

So if we can treat this and get it under control, get the virus gone before your white cells return, then that's the best way to do it.

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.

Kathy Byar

So you won't be getting out of here today, unfortunately. We really need to treat this.

Rebecca Perl

For like a week?

Kathy Byar

For a week. OK?

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.

Rebecca Perl

It feels tight around my nose. And it feels sort of stuffy. And it just feels like it's hard to sleep in because it's big, and I feel kind of like an elephant or something with this big nose. I can't eat with it on or do anything. I just feel like I have to stay very still. Watching TV is good.

Joe Bradley

Would you like a cup of coffee?

Princess Ann

What time is it?

Joe Bradley

About 1:30.

Princess Ann

1:30? I must get dressed and go.

Joe Bradley

Why? What's your hurry? There's lots of time.

Princess Ann

Oh, no, there isn't. And I've been quite enough trouble to you as it is.

Joe Bradley

Trouble? You're not what I'd call trouble.

Rebecca Perl

That was just miserable because I had to be on this machine for 18 hours for seven days. And I think my overall feeling about that was I was just embarrassed to be stuck with that thing on my face. I couldn't even believe it was happening to me. And also, I was mad. I was mad that they were doing this to me. At one point, the doctor said to me, hey, we're not doing this to you to be mean. He had to kind of remind me. And I mean, I knew that, but I was pissed that they were doing this to me. But that anger kept me from being worried or scared, because their fear was that my lungs were going to clog up with this RSV virus and I would get something similar to pneumonia or I wouldn't be able to breathe.

[FLUTE MUSIC PLAYING]

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

It was a disconnect for me. I just didn't make the connection that there were all these other people on respirators, and I could easily be one of them in a matter of days. I didn't think it was going to happen.

Tom Jennings

The big question that we're completely avoiding-- and, in fact, I haven't even thought about it until this point, really-- is the cancer itself. We're in the midst of this whole process right now. And you're so encumbered with the daily routine and sucking aerosol and getting your counts done. And so you're totally drawn into the process, and you're not really thinking about the final goal at all. The cancer, we know that it's there. We're here for that. But we're not thinking about that at all. I'm not, anyhow.

James Armitage

You did it. Yeah. Now it's just tidying things up. That's really a huge thing, really big.

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.

James Armitage

Knowing that you have an adequate granulocyte count that you made yourself means you've engrafted. The marrow took. You're no longer at risk of sudden lethal infections. That means you've leaped over one other big barrier. And in fact, the truth is, usually, from now on, things are downhill.

Rebecca Perl

It was really nice and reassuring to have him say that because we had had a sort of a small setback, where I had had more chemo, and when we looked at the tests, that chemo hadn't done anything to shrink the tumor. And so you worry that the bone marrow transplant isn't even going to work. And he said, really without any information, I'm very pleased with how everything went, with this undertone of, you've probably made it. It's probably worked. You're probably OK. I don't know how he would have known that, or maybe he was bluffing. But it was real reassuring to have him come and say those things.

Kathy Byar

And your blood counts are looking great. Wonderful platelets. I don't know if you saw them today.

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.

Kathy Byar

What do you say about getting your catheter out and getting home? How's that sound?

Rebecca Perl

Yeah.

Kathy Byar

Up for that? Congratulations.

Rebecca Perl

Thank you.

Kathy Byar

We just need to give you a nice little certificate saying you're out of here. No. You did a great job.

Rebecca Perl

It was weird to me when they said, OK, you can go home. And congratulations. Yay! And everybody clapped and kissed and hugged.

Kathy Byar

I'm so thrilled for you.

Rebecca Perl

Yeah. Thanks for helping.

Kathy Byar

Oh, hey.

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.

Kathy Byar

You're a doll. You take it easy. We'll see you when you come back in 100 days. Bye.

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.

Rebecca Perl

You don't feel too good, but, you know, at least it goes by pretty-- what's good is the white cells come back pretty fast, so just a matter of about 10 days there where you're really vulnerable.

Then we say goodbye to Lorraine.

Rebecca Perl

How's Graham doing?

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

Lorraine Brazier

It's starting to feel like it's not going to work. Sorry.

Rebecca Perl

No. Don't worry. Forget it. Lorraine.

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.

Rebecca Perl

That's pretty scary. That's pretty scary. It's early for that still. It's early, though, for that.

I have a weird sense of this whole thing with Graham because, I mean, well, now it looks bad for Graham. But for a while there I was thinking he could pull through and make it and the bone marrow transplant wouldn't really work for me. And I could be down, and he could be up. And I mean, nothing's guaranteed here at all.

Bye, Lorraine. We'll call you. Yeah. We'll call you.

Lorraine Brazier

OK.

Rebecca Perl

Take care. Give Graham a kiss for us. Can you get in there to kiss him? OK. Then do. Bye. Bye, Thomas. Bye, Thomas! Say hi to Kelli.

Griffy, you've gotten so big. I'm sorry I had to be away for so long. I was away, but I'm back now. Are you my Griffy? Are you my Griffy?

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.

Griffin

Mommy.

Rebecca Perl

Mommy came back. "'Mommy,' they cried. They flapped and they danced and they bounced up and down on their branches. 'What's all the fuss,' their mother owl said. 'You knew I'd come back.' And the baby owls thought-- because all owls think a lot. 'I knew it,' said Sarah. 'And I knew it,' said Percy. 'I love my mommy,' said Bill."

Griffin

Griffy.

Rebecca Perl

Griffy.

Griffin

Mommy.

Rebecca Perl

Mommy.

Griffin

Griffy.

Rebecca Perl

Griffy.

Griffin

Mommy.

Rebecca Perl

Mommy.

Griffin

Griffy.

Rebecca Perl

Griffy.

Griffin

Mommy.

Rebecca Perl

Mommy.

Griffin

And Mommy.

Rebecca Perl

Mommy.

Hi, is this the seventh floor bone marrow transplant unit? I was trying to reach Lorraine Brazier. I'm a friend of hers, and I was on the unit myself. Rebecca Perl. And I was just trying to find out about Graham. He's not in the room anymore.

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

Rebecca Perl

This morning. Did they just take him off the respirator? They didn't. He just-- he wasn't breathing. Oh. Oh, gosh.

So weird. I mean, this isn't what you expect, you know? I mean, it's rare that people die from the bone marrow transplant, but I guess it happens. But it's rare when you get your own cells. I don't know. I just feel sorry for Lorraine. Because she's got two little kids. One is just one year old, and one is eight years old. That's a lot. And it's just a lot that they won't have a father.

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.

Woman 12

Welcome to Omaha's Eppley Airfield. The terminal curb is for the immediate loading and unloading of passengers.

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.

Tom Jennings

That's Dr. Vose.

Julie Vose

Who is this?

Rebecca Perl

That's Griffin.

Julie Vose

How you doing? You taking good care of mom?

Rebecca Perl

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

Julie Vose

CAT scan looked really good. They said that the mass was shrinking from where it was. Last time we checked in, it was two by one. That's pretty close to being what we would consider normal size for a lymph node. So it's definitely a lot smaller. It's hard to know for sure if it's completely gone.

Rebecca Perl

It's definitely not smaller?

Julie Vose

A lot smaller. A lot smaller.

Rebecca Perl

Oh, OK. Well, that's good. Yeah, thank you.

Julie Vose

Yeah, well, you did all the work.

Rebecca Perl

I think we got about as good news as we could. I mean, it could shrink a little bit more, I suppose. And it's possible that what we're seeing, the reason it's somewhat bigger than a regular lymph node is that there's scar tissue. So hopefully that's what it is and we're OK. And so that's nice. It's good. This is the part where we do the Mary Tyler Moore, like take off hat and throw it up in the air. We need that music. [SINGING] You might just make it after all.

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.

Rebecca Perl

Sometimes, I think, I wonder if it changed me. You know, like Armitage, who's the head doctor in Omaha, said, you don't go through this without changing. And sometimes I feel like I'm really just the same. I still sweat the little details or get mad if the kitchen is a mess or something, things that shouldn't matter to me anymore having gone through something like this. And yet I still get caught up in them. And so sometimes I think I haven't changed. And that scares me because it makes me think that if I haven't changed, then I do everything the same, then I could get sick again. But if I can learn from this and change, then I won't.

Credits.

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, radio@well.com

This American Life is distributed by Public Radio International.

[FUNDING CREDITS]

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

Announcer

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