Selman Family Photo
Stewart Selman at home in 2002, months before his diagnosis was made.
Selman Family Photo
This photograph is from 2003, after Stewart had undergone months of treatment.
Rebecca Peterson describes the catharsis of sharing her pain — and her hopes that her story can help others.
Her essay deals with everything from her grief to social pressures about discussing health issues.
The story of Rebecca Peterson and Stewart Selman is a complicated one. But compassion and anger often compete in such cases.
NPR's Vikki Valentine spoke with Sarah Gupta about what family members should know when caring for loved ones with a serious illness. Gupta is a social worker and director of support services for the Brain Tumor Society.
Last week, NPR asked you to share your comments about coping with terminal care. We received hundreds of responses. Read them at our special NPR forum, "A Year to Live."
At age 48, Stewart Selman was told he had a malignant brain tumor. Less than 5 percent of people who are diagnosed with malignant tumors of the brain live for more than a year. To leave a record for his wife, Rebecca Peterson, and their two children, Selman began an audio diary.
Although Stewart knew his messages would be heard by a wider audience, Rebecca says she didn't have the courage to share them until now — three years after her husband's death.
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 had been two weeks since he first learned about his brain tumor.
"We only live about five minutes from where the CAT scan was done. I was kind of keeping it together," Stewart said. " 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 I just started crying...I knew I had this brain tumor. And I knew my life was going to change forever."
"Yeah, I remember that," says Stewart's wife, Rebecca.
This is the first time she has heard these tapes. It has been almost a full year since Stewart died.
"I remember him coming home and the door slamming — before the door even slammed, 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...'" Rebecca recalled.
That day, Stewart recorded his side of the story. "I just felt terrible and I 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 when we were old or whatever and she was going to be left with my children and it would be much, much harder."
Rebecca Peterson and Stewart Selman met 14 years earlier in the highlands of Guatemala. Rebecca was teaching English. Stewart was there while traveling. Stewart quickly passed her ultimate test of a future husband. She could imagine what conversations would be like with him after 10 years of marriage. With Stewart, she said, she knew they would always be easy and interesting.
"I felt a sense of warmth, of connection of gentleness that really impressed me," she said.
Eleven years and two children later, their life was all she had imagined. But it all changed in that last year. Stewart made this entry in his audio diary in February, 2003, shortly after receiving the diagnosis: "I don't feel any bitterness about why me getting a tumor," he said. "As I've gotten older you know and more people that bad things happen to. Gosh, it can't always be the other guy."
Rebecca had been worrying about Stewart for months when he started getting migraines almost weekly. They both thought stress was the likely cause. But when the headaches kept coming regardless of the stress level, Stewart's doctor suggested a CAT scan.
Rebecca remembers that follow-up visit with the neurologist.
"He said, 'You know, I've seen a lot of families go through this and there's a lot of different ways people handle it. But there are some families can pull together and achieve this kind of transcendence,'" Rebecca remembered.
"And transcendence was the word he used — where they go through their grief and their anger and everything else, but they really have something precious that they hold onto in the end. And I think one of the thing that I feel worst about is the fact that I never felt anything like transcendence. I never achieved anything like that with my family. Instead of things sort of coming together and us having a wonderful, glowing "transcendental" experience, it was really quite the opposite; things just kind of dissolved and got down to a very, very basic survival level."
At that same visit, Rebecca and Stewart also learned that his tumor was rapidly growing. Situated behind his left ear, it was now the size of a golf ball. Doctors said it would have to come out immediately.
Stewart made this diary entry on February 26: "Hi, it's about a quarter to seven. I've been brought down to 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."
The surgeon got most of the tumor in that procedure. But with a malignancy in the brain, even if the tiniest amount of cancer cells is left intact, there's almost certain to be a recurrence.
After his surgery, Stewart was placed on steroids. That's when Rebecca first started to notice changes in Stewart.
"The day 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 it would it be interesting to go get it.
"And he just exploded into a rage at me," she said. "He was screaming so loud at me in that van, I had to pull it over and park it because I couldn't drive it any more. I was, like, trembling."
Stewart remembered that day too.
"I don't know who brought this up but I flipped out," he said in an entry he made on March 5. "We've been married how long? Eleven years last November. In the next 20 minutes, we probably yelled at each other with more intensity and with more passion than in the previous 11 years combined."
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.
"He came home... and he kicked the door in the bathroom practically off the hinge," she said. "It was just a level of anger and violence that I'd never seen in him."
Stewart was adamant. He had no interest in books about his cancer. Instead, he was reading about stone walls and wrought iron fences. These were 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.
"I would like it to be part of my family's home for the foreseeable future," he said. "In some ways, I think I'm building a monument to myself."
What was good for Stewart, throwing himself into home projects, wasn't necessarily good for the rest of the family. When Rebecca hears Stewart's version of events, she remembers things very differently.
"I had this fight going on inside me. I wanted to say, 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," she said. "Just do something to help me out because here I am struggling going to work every day, managing the kids. I was dying under the weight of all that and the worry and the concern of what was going on with him."
Stewart made this diary entry on April 1, 2003: "This has been a little bit of harder week — very slight throbbing in my head, which is, even if it's nothing — just swelling... it's a reminder, 'Hey buddy, it's still there.'"
Rebecca and Stewart had two young children, Dalia, 8 and Noah, 10. 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 Dalia would wander in and lie with him on the spare futon. In the wee hours, Stewart would often tell the kids stories until they fell back to sleep. These were stories he wanted them to remember about him, like the time he became a cowboy for a short while and led a 20-mile cattle drive.
But Dalia was more intrigued with the present. Stewart made this entry on May 1: "Dalia's really into my scars and just really wants everybody to see them. Noah, on the other hand, doesn't really want to see them and that's fine because I don't particularly like looking at them either."
Stewart quit his consulting work so he and the kids would have more time together. But as Rebecca recalls, his relationship with their children was slowly changing, too.
"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'd pull the car up to the house, the kids were running out the door and saying, 'Mom, Daddy's being mean to us.'"
One morning it came to a head, Rebecca said. Noah was having a tough morning, arguing with this dad before school. When Stewart went out to pick up the morning paper, Noah swung open the screen door and almost hit his dad in the face. Rebecca said Stewart grabbed Noah by the scruff of the neck and swung him around. He laid Noah down and sat on top of him.
"At that moment I was really scared and really angry," Rebecca said. "I took the kids to the bus stop and came back home and I went upstairs and I just screamed at him, 'Don't you ever do that again to any of my kids. I will send you out of this house, and you will die a lonely man.'"
She says she regretted saying it but she felt she had to let him know that his behavior was getting more and more extreme.
The steroids were having a marked effect on Stewart. He was often manic when he was taking them, Rebecca said. She remembers he was able to single-handedly lift an old washer/dryer and walk it to the curb to be picked up as trash. But off the steroids, Stewart was lethargic and depressed.
In his diary entry from June 3, six months after his diagnosis, Stewart talked about the impact of the steroids.
"My steroids have been reduced, and they may be eliminated. That would be good," he recorded. "Oh gosh, I'm forgetting for my seizures... What do you call it... See, I do lose words." As Stewart's tumor returned and continued to grow, it gradually took away his power to speak.
There were other changes in Stewart, including paranoia, Rebecca said.
"He was convinced that a neighbor of ours who lives down the street had come into our house and had started doing things on our house like changing the wiring or taken his slippers or hidden them or other things," she remembered. "And this person has never been in our house. And he would just say, no, you're wrong, I know she was here."
Rebecca said she occasionally took walks with neighbors to try to make sense of what was happening. But mostly, she kept difficult stories like these to herself. Eventually, she started looking online for support.
"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," she said. "I would read these beautiful stories of people ending their 30-, 40-year marriages and it was so beautiful and they just loved each other right out of existence. And I was just thinking, 'Why isn't that happening to me? Why isn't that going on in my life?'"
Instead, Stewart and his illness pushed her further away, Rebecca said. Stewart would get angry and tell her to go away, tell her that he wanted a divorce. He said he didn't want to be around her anymore. Eventually, Rebecca decided to take 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. "Sometimes we'd be out, and he'd get ticked with me about something, and he'd start dressing me down in public," she said. When they visited some of his doctors, she said Stewart would make all kinds of accusations about her in front of them.
"It was scary. It was terrifying," Rebecca said.
One of the most difficult moments came one evening about eight months into Stewart's illness, when Rebecca's father-in-law was visiting. An argument about politics broke out between Stewart and his dad. Rebecca says she was trying not to incite Stewart to any further anger. "And he accused me of being a coward, and was just getting really worked up about it and at one point I took the kids upstairs."
Rebecca said the three of them sat in the bathroom, closed the door and huddled together. "And I had to say, 'You know, your dad is not thinking right, and I want you to be careful around him,'" she recalls. "I remember Noah saying, '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.'"
Eventually, Stewart's ability to talk was severely hampered. The doctors said nothing could keep the tumor from growing. So they decided to bring in hospice care. "I think one of the difficulties in speaking language now is that I just miss and lose tremendous amounts of water — not water, words — and this is not good. This is not good whatsoever. I can't even talk English anymore, this really stinks."
That was Stewart's last diary entry, dated November 20, 2003. He died two months later, almost exactly a year after his initial diagnosis had been made. He was at home with Rebecca and the kids, surrounded by family and their friends.
Rebecca says it was almost a full year after her husband's death before she could really feel the loss. "It's taken a long time to really put the rest of this nastiness behind me," she said. The turning point for her was a phone call from an old friend, her first boyfriend from high school.
Although they hadn't talked in more than 10 years, he had heard about Stewart's death through mutual friends. He was a cabinet-maker, and in one of many phone calls, Rebecca mentioned needing a new cabinet in her office. He offered to build it for her, and she offered to travel to Cincinnati to help drive it back to her home.
During the drive, they fell in love all over again. Rebecca says that's what provoked a flood of grief and love for late her husband. "You know, having this emotional thing happen to me has just opened the gate to all kinds of emotional things, this grieving that I have 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 any more, because I am just blown wide open, and I have to feel it," she said.
"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."
When Stewart was keeping his audio diary he made only one brief mention of what his death might bring. It was recorded a few weeks after he learned about his brain tumor. "Who knows what happens to me when I die," Stewart said. "Maybe there's an afterlife, maybe there isn't. Maybe you just sort of return to the earth and your spirit disperses. I'm not sure. I guess I'll find out. But, how Rebecca's future proceeds is going to be different. Let's say two years, she'll be 46, young and still really cute. I don't know what her life will be like, but it'll be different."
Another year has passed since Rebecca first heard the tapes. She and her old boyfriend are no longer a couple. She's just quit her job, and she's now 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.
She says she still finds her thoughts wandering to Stewart daily. She wonders what he would think of her new life. "I even have certain places in the house that I associate with Stewart," she said. "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 I feel like he's right there."
Rebecca Peterson says that 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.