MELISSA BLOCK, host:
This is ALL THINGS CONSIDERED from NPR News. I'm Melissa Block.
MICHELE NORRIS, host:
And I'm Michele Norris. Almost three years ago independent producer Mary Beth Kirchner received an extraordinary offer: to help a man document the most difficult time of his life.
Stewart Selman was 48 years old, he had just been told he had a malignant brain Tumor, and he was anxious about how little time he might have to live. Stewart Selman agreed to keep an audio diary and he did this until his death a year later.
He wanted to leave this record, mostly for his wife, Rebecca Peterson, and their two children. But he knew the rest of us would be listening, too. To tell the complete story, we've asked Rebecca to listen to Stewart's diary and offer her own memories of his final months.
What you're about to hear are some of the most intimate stories about the hard truths of a terminal illness, and how it can unceremoniously usher a life to its end. Producer Mary Beth Kirchner brings us this profile.
MARY BETH KIRCHNER reporting:
Stewart Selman started recording his audio diary on February 22, 2003. His first entry was made while he was in the hospital awaiting tests, awake and alone in his room at two in the morning. It's been two weeks since he first learned about his brain tumor.
Mr. STEWART SELMAN (Diagnosed with Brain Tumor): We only live about five minutes from where the CAT scan was done. I was kind of keeping it together. This was a big deal. I drove home and my kids were downstairs playing a game. I went upstairs and I saw my wife and, you know, I just started crying. I knew I had this brain tumor. And I knew my life was going to change forever.
Ms. REBECCA PETERSON (Selman's Wife): Yeah, I remember that.
KIRCHNER: Stewart's wife, Rebecca Peterson, is hearing these tapes for the first time. She says she hasn't felt ready to listen to them until now. It's been almost a year since Stewart died.
Ms. PETERSON: I remember him coming home and the door slamming. Before the door even slammed, I think, he was yelling out my name and bounding up the stairs. And he just held me and I was like, What? What? What can it be.
Mr. SELMAN: I just felt terrible and I really, really had these incredible feelings of guilt that I was abandoning my wife. We had made this lifetime deal. I wasn't going to be there, you know, when we were old or whatever and she was going to be left with, you know, my children and it would be much, much harder.
KIRCHNER: Rebecca Peterson and Stewart Selman met 14 years before in the highlands of Guatemala. Rebecca was teaching English. Stewart was there while traveling.
At Stewart's memorial service, Rebecca told the story of their very first meeting.
Ms. PETERSON: Imagine my surprise, 14 years ago in March, when from a darkened doorway at a Spanish language school where I worked in Guatemala, I opened the door to a brilliant blue sky silhouetting a young, tanned man, with the most luminous green eyes I had ever seen, asking for me.
KIRCHNER: Stewart quickly passed Rebecca's ultimate test of a future husband, imagining what conversations would be like with him after 10 years of marriage. With Stewart, she says, she knew they would always be easy and interesting.
Ms. PETERSON: I felt a sense of warmth, of connection, of gentleness that really impressed me.
KIRCHNER: Eleven years later, their life, now with two children, was all she had imagined. But everything changed so quickly that last year. This entry is from the first week of Stewart's diary, in February 2003.
Mr. SELMAN: I don't feel any bitterness about, why me getting a tumor? As I've gotten older, you know, knowing more people that bad things happen to. And it's sort of, gosh, it can't always be the other guy.
KIRCHNER: Rebecca Peterson had been worrying about her husband Stewart for months. He'd started getting migraines almost weekly. Stress, they both thought, was the likely cause. But the headaches kept coming, stress or no stress. That's when Stewart's doctor suggested the CAT scan. Their follow-up visit with a neurologist still haunts Rebecca to this day.
Ms. PETERSON: He wasn't mean about it, he was very compassionate about it. But then he said, you know, I've seen a lot of families go through this and there's a lot of different ways that people handle it. But there are some families who are able to pull together and to achieve this kind of transcendence. And transcendence was the word he used, where they go through their grief and their anger and everything else, but, you know, they really have something precious that they hold onto in the end.
And I think one of the things that I feel worst about is the fact that I never felt anything like transcendence. I never achieved anything like that with my family. I mean, instead of things sort of coming together and us having this wonderful, glowing transcendental experience, it was really quite the opposite, things just kind of dissolved and got down to a very, very basic kind of survival level.
KIRCHNER: At that same visit, Stewart and Rebecca also learned that his tumor was rapidly growing. It was now the size of a golf ball, behind his left ear, and would have to come out immediately.
Stewart's diary February 26.
Mr. SELMAN: Hi, it's about a quarter to seven. I've been brought down to my room, to like a pre-op room. Rebecca's here with me. She's been rubbing my tummy, which makes me feel really, really, really good. You know, it's the best thing I want to see before I go into surgery.
KIRCHNER: The surgeon got most of the tumor, but with the malignancy in the brain, even if the tiniest amount of cancer cells are left behind, there's almost certainty of recurrence.
Post-surgery and on steroids, Rebecca remembers she first started noticing changes in Stewart.
Ms. PETERSON: The day that I drove him home from the hospital, I was driving him home in the van, and I'd mentioned to him that a friend of ours had recommended a book about a doctor who had a brain tumor and had tried some different things, and would it be interesting to go get it. And he just exploded into a rage at me. He was screaming so loud at me in that van that I had to pull it over and park it because I couldn't drive it any more. I was, like, trembling.
Mr. SELMAN: I don't know who brought this up, but I flipped out.
KIRCHNER: Stewart's diary, March 5th.
Mr. SELMAN: We've been married how long? It's 11 years, 11 years last November. In the next 20 minutes, 25 minutes, we probably yelled at each other more intensely and maybe with more passion than we had in the previous 11 years combined.
KIRCHNER: Rebecca says that ride home was the first sign that they were entering new territory: The drugs, the surgery, the radiation and the ever-growing tumor were taking over.
Ms. PETERSON: He came home and we continued to have that argument and he ended up, like kicking the door in the bathroom, and like kicking it practically off the hinge. I mean it was just a level of anger and violence that I had never seen in him.
KIRCHNER: Stewart was adamant. He had no interest in books about his cancer. Instead, he was reading about stone walls and wrought iron fences. Projects he'd always wanted to finish around the house. Stewart was a home indoor air quality consultant and had a background in construction. In his diary on March 24, Stewart explained that these projects felt more therapeutic.
Mr. SELMAN: I was talking to Rebecca about it a little bit, especially as I build these things. I'd really like the home to just be part of my family's home for the foreseeable future. In some ways, I think I'm building a monument to myself.
KIRCHNER: And when friends came to visit, and there were many visitors from near and far, they were often recruited to help with the house. On occasion, Stewart would take along his tape recorder.
Mr. SELMAN: You're one of the best workers I've had so far, we may keep you an extra week.
Ms. PETERSON: One of the things that, that really ticked me off to no end, was the amount of time Stewart wanted to spend working on the house.
KIRCHNER: What was good for Stewart, throwing himself into home projects, wasn't necessarily good for the rest of the family. Rebecca hears Stewart's version and remembers things very differently.
Ms. PETERSON: I had this fight going on inside me. I wanted to say, you know, why can't you be more helpful around the house? If you've got the energy to work on the house like this, why can't you do the dishes and pick thinks up and clean. Just do something to help me out because here I am struggling, I'm going to work every day, I'm coming home and trying to manage the kids. I was dying under the weight of all that and then, you know, the worry and the concern about what was going on with him.
Mr. SELMAN: This has been a little bit of harder week.
KIRCHNER: Stewart's diary entry, April 1st, 2003.
Mr. SELMAN: You know, I've had, and even as I speak right now, I sort of have this very, very slight throbbing in my head, which is, you know, even if it's nothing, if it's just swelling associated with radiation, or perhaps even, still the surgery, it's a reminder, Hey buddy, you know, it's still there.
KIRCHNER: And on April 5.
Mr. SELMAN: You know I don't know if you could really hear it there as I'm doing this, but I'm just short of breath now, just even talking. So it's really kind of a track, it's just my body is in the process of falling apart. Something I'm going to battle, but I just don't know how it will all turn out. And just even putting on, for me, eight to 10 pounds, man, it's a real big deal in my life. I mean, I'm not that big of a person and you put it all on in your belly, it's serious, I'm just shaking my belly right now, with one hand.
KIRCHNER: And then there were the kids. Rebecca and Stewart had two young children, Dahlia, age eight and Noah, 10.
Mr. SELMAN: Have I woken you up, Noah?
KIRCHNER: Stewart would often wake up in the middle of the night, unable to sleep, and move into a guest bedroom to record his diary. On occasion, Noah or Dahlia would wander in and lie with him on the spare futon.
Stewart's diary, April 12.
Ms. SELMAN: Did I wake you up? Say good morning.
DAHLIA (Stewart Selman's daughter): Good morning.
Mr. SELMAN: How did you sleep tonight?
Mr. SELMAN: Did you hear the thunder?
KIRCHNER: In the wee hours, Stewart would often tell the kids stories until they fell back to sleep, stories he wanted them to remember about him, like how he became a cowboy for a short while and led a 20-mile cattle drive. But Dahlia was more intrigued with the present.
From Stewart's diary on May 1.
Mr. SELMAN: Dahlia's really, really into my big scars and just really wants everybody to see them. Noah, on the other hand, doesn't want to see them, and that's fine because I don't particularly like looking at them either.
KIRCHNER: Stewart and the kids had more time together since Stewart quit work, but Rebecca recalls his relationship with their children was slowly changing too.
Ms. PETERSON: There were many, many days when I'd either get calls on my way home from work or at work or as soon as I pulled the car up to the house. The kids were running out the door and saying, mommy, daddy's being mean to us, and one morning, it really came to a head.
KIRCHNER: Rebecca remembers Noah was having a tough morning, arguing with his dad before school, and when Stewart went out to pick up the morning paper, Noah swung open the screen door and almost hit his dad in the face.
Ms. PETERSON: Which, granted, would enrage anybody, but he grabbed Noah by the scruff of the neck and swung him around and laid him down and just like sat on top of him and said, you know, like, don't you ever even think of doing that again, and it just really scared the crap out of him, and, at that moment, I was really scared and really angry, and I took the kids, it was time to go to the bus. I took the kids to the bus stop, and I came back home, and I went upstairs, and I just screamed at him, and I said, don't you ever do that again to any of my kids because I will send you out of this house, and you will die a lonely man.
And, of course, I regretted that after I said it, but I had to let him know that his behavior was just getting more and more extreme.
KIRCHNER: The steroids. On them, they made Stewart manic. Rebecca remembers Stewart was able to single-handedly lift up an old washer/dryer and walk it to the curb to be picked up as trash, but off them, he was lethargic and depressed.
Stewart's diary, June 3, six months after his diagnosis.
Mr. SELMAN: My steroids have been reduced, and they may be eliminated. That would be good. Oh, gosh, what was it? I'm forgetting here. For my seizures, the, see, I do lose words.
KIRCHNER: Stewart's tumor was slowly growing back and was gradually taking away his speech. The tumor, the steroids, the radiation, Rebecca didn't know what to blame for all the changes in Stewart, including the paranoia.
Ms. PETERSON: He was convinced that a neighbor of ours, who lives down the street, had come into our house and had started doing things in our house, like changing the wiring or taking his slippers and hidden them or other things, and this person has never been in our house, and he would just say, no, you're wrong. I know she was here.
KIRCHNER: Rebecca occasionally took walks with neighbors, trying to make sense of what was happening, but mostly, she was quietly keeping stories like these to herself. Eventually, she started looking online for support.
Ms. PETERSON: I would read stories like that all the time of people who were just dealing with these wild, emotional behavioral and all other kinds of problems, that they were just struggling to try to cope with, and some people, you know, I would read these beautiful stories about people ending their 30-, 40-year marriages, and it was just so beautiful how they just loved each other right out of existence, and I was just thinking, God, why isn't that happening to me? Why isn't that going on in my life?
KIRCHNER: Instead, Rebecca says Stewart and his illness pushed her further away.
Ms. PETERSON: I mean, there were a lot of times when he wanted to divorce me. He would just get so angry when I would try to tell him that his perceptions of things were wrong. He would just say we should just get a divorce, and I will just go away, and you can do whatever, but I just don't want to be around you anymore, and that was really hard.
KIRCHNER: Eventually, Rebecca decided to take a leave from work. It was too much to keep up with the kids and home and alternative treatments for Stewart's tumor, but Rebecca remembers the tension between them only grew.
Ms. PETERSON: Sometimes, we'd be out, and he'd get ticked off with me about something, and he would just start dressing me down right in public, and I didn't know what to do, and, at that point, we were seeing some therapists, speech therapists and physical therapists because he began to lose sensation in one of his legs, which was causing him a lot of mobility problems.
And sometimes, he'd go in, and he'd start talking to them about our relationship issues and saying, Rebecca's doing this and this and this, and I'd have to say, no, honey, she's not really here to hear that. She's here to help you with your movement, but I knew they had nothing but sympathy for me, and they would hand me little notes and say, you know, try calling this number. Call this social worker, do this agency, and it was scary. It was terrifying.
KIRCHNER: One of the most difficult moments came one evening about eight months into Stewart's illness, when her father-in-law was visiting. Rebecca says she was trying to stay out of an argument Stewart and his dad were having about politics, trying not to incite Stewart to any further anger.
Ms. PETERSON: And he accused me of being a coward, and he was just getting really worked up about it, and, at one point, I just had to take the kids upstairs because they were just wandering around the house. This was in the evening, and we all sat in the bathroom. We closed the door, and we were just huddling, and I had to say, you know, your dad is not thinking right, and I want you to be careful around him.
I know that now he can't move around very fast because of his leg, and I know you could get away if he ever tried to hurt you, but you know, I want you to know that this is not him. It's just the brain tumor, and I remember Noah saying, God, how can you let him talk to you like that? How can you let him treat you like that? And I said, it's just not him.
KIRCHNER: Stewart gradually started losing his ability to talk. The doctor said nothing could keep the tumor from growing, so they decided to bring in Hospice care.
Mr. SELMAN: I think one of the difficulties in speaking language now is that I just miss and lose tremendous amounts of water, not water, just words, not water, words, and this is not good. This is not good whatsoever. I can't even talk English anymore. This really stinks. What is this, a furnace? Not a furnace, obviously, I know what a furnace is. I can't do it anymore. This really may not be time anymore, really, you're just sucking the life out of my ability to talk. I'm going to turn this off.
KIRCHNER: That was Stewart's last diary entry, November 20. He died two months later, almost exactly a year after his diagnosis, at home with Rebecca and the kids and surrounded by family and friends. Rebecca says it took her almost a full year after his death to get to the point where she could really feel the loss.
Ms. PETERSON: This grieving about what I've lost, that I've just been having the last couple of weeks, is really getting back to that person, that person that I met in Guatemala, that person who I traveled with and just had wonderful times with. It's taken a long time to really put the rest of this nastiness behind me.
KIRCHNER: Rebecca says the turning point, for her, was a phone call, not long after Stewart died, from an old boyfriend, her first boyfriend, actually, from high school, who had heard about Stewart's death through mutual friends. He'd lost both of his parents when they were teenagers in Cincinnati, and they'd broken up in the midst of his grief. They hadn't talked in over ten years.
Ms. PETERSON: He's been calling me once a month or maybe six weeks or something, just to check in and see how we're doing, and then, also, I was looking to build this cabinet in my office, and it turns out he's a cabinetmaker.
KIRCHNER: He asked Rebecca to make a drawing of her cabinet and said he'd build it for her.
Ms. PETERSON: And I said, yeah, but how do we get it here? It turned out that I flew down there to Cincinnati, and we loaded up a truck, and we drove it back, and we just fell head over heels in love with each other once again.
KIRCHNER: Head over heels in love with someone else, and that's what's provoked a flood of grief and love for her late husband.
Ms. PETERSON: It just boggles the mind. Having this emotional thing happen to me has just opened the gate to all kinds of emotional things, other things, and, like I said, this grieving that I have just been furiously avoiding, that I have put up walls and walls and walls, just to not feel, all of a sudden, I can't do that anymore because I am just blown wide open, and I have to feel it, and it's coming out, and it's coming out as grief, it's coming out as all the things that he and I had that were really, really wonderful and the wonderful parts of our relationship and the person that he was, and that loss, to me, is just much sharper now.
KIRCHNER: When Stewart was keeping his audio diary, he made only one brief entry where he talked about what his death might bring. It was recorded a few weeks after he learned about his brain tumor.
Mr. SELMAN: Who knows what happens to me when I die. Maybe there's an afterlife, maybe there is, and maybe you just sort of return to the earth, and your spirit just kind of disperses. I'm not sure, but I guess I'll find out. But how Rebecca's future proceeds is going to be different, I mean, let's say, we say two years, so she'll be 46, young, still really cute, and I don't know what her life will be like, but it'll be different.
KIRCHNER: It's now been another full year since Rebecca first heard these tapes. Her life is different now. Rebecca says she and her old boyfriend are no longer a couple. She's just quit her job and is in search of a new career. A few weeks ago, she celebrated her son Noah's bar mitzvah, an event that was especially painful without Stewart. Stewart was Jewish, not Rebecca.
And she says she still finds her thoughts wandering to Stewart daily in those rare moments where she has some time alone, where she wonders what he would think of her new life.
Ms. PETERSON: I mean, I still even have certain places in the house that I associate with Stewart, our third floor, which we were working on finishing as he was dying. I was trying to get that whole space done, and now that it's done, I walk to the north window, and I always look out that window. Whenever I look out that window, I think of him, and I feel like he's right there.
KIRCHNER: Rebecca lost Stewart in so many ways before he died. In her memories, at least, she's now with the husband she knew and is happy to have him back.
BLOCK: Mary Beth Kirchner is an independent producer in Los Angeles.
BLOCK: Rebecca Peterson told us her greatest hope in sharing these difficult, private stories of Stewart's last year is that other spouses or family members might not feel the same isolation that she lived with as she lost her husband to a brain tumor. She asked if we would list resources for families on our web site, and we've done that. There's also an essay by Rebecca on making her family's pain public and a form, where you can share your own experiences. You can find all that at NPR.org.