KEEPING THE SHIP AFLOAT
A husband with a brain tumor. Two children with curious minds. How one woman navigates the rough waters of her family's life.
Photography by Fran Collin
It wasn't the way they had expected to spend the holiday season. A few days before Christmas 2000, Carol and Ken Salmon of Dellwood, Minnesota, were looking forward to the Christmas festivities-but that was before Carol found her husband unconscious on the bedroom floor, bruises on his body, blood trickling down his face. "Ken had fallen and cut himself on a corner of the night table, just missing his eye," she says. She managed to get him into bed. "He kept saying he hadn't hurt himself, but he wasn't really awake. It was freaky." She called 911. The paramedics didn't know what had caused the fall. I was indignant when they asked me if it was drug-related!"
In the emergency room at the local hospital the verdict was a probable stroke. Ken was told to come back after Christmas for a further evaluation. However, his sister, who was a nurse at the Mayo Clinic in Rochester, urged him to come there.
Bringing their two children who would stay with Ken's sister, the Salmons drove the 90 miles to the Mayo Clinic Christmas week. There Ken was put through a series of tests. It was at the end of a very long day when they were given the news. "Why do they always wait until it's dark and people have left?" asks Carol. Ken learned he had a brain tumor, and he was to check into one of their hospitals, St. Mary's, immediately. "We said we needed time to talk to the kids. Our daughter, Caitlin, was eleven and our son, Noah, only six. But the doctor said we shouldn't wait."
A biopsy report concluded that the tumor was inoperable because it was on a motor strip, (a portion of the brain that initiates the actions of various muscles). Surgery would leave Ken at risk for "major deficits," such as a considerable loss of the ability to use his muscles. Ken asked if the doctor would mind if he got another opinion. "He said we were welcome to ask 100 doctors, but we'd get 100 of the same opinions," recalls Carol. However, one physician disagreed. "He said the tumor was definitely operable, and not to be concerned about ‘deficits.'"
Ken was in "major denial," says Carol, but she was determined to do everything possible to save the man she had married 17 years ago, the man who was her college sweetheart. She went online to research hospitals that specialize in brain surgery and to get the names of neurosurgeons. They chose the U.C. Medical Center in San Francisco because the surgeon was so highly rated. Also, Carol's family lives nearby, so she and the children would have a home. "Ken wanted the kids with us, even though it meant taking them out of school. He said he'd recover faster if he were able to ‘sit up in the hospital bed and be Dad.'"
The surgery was successful. That was the "good news," the surgeon told them. The "bad news" was that the type of tumor was more serious than he'd thought. The prognosis was six months to two years. They kept the news from the children. "I didn't want them to think their father might die in two years. It would be like taking away their innocence."
Ken began aggressive chemotherapy and radiation, as well as a new treatment—thalidomide. Many people might recall that thalidomide, a sedative once used by pregnant women, was linked to severe birth defects and banned worldwide. Today, though, it's used to treat some cancers because it can keep blood vessels from forming; tumors need these vessels to grow and spread.
When they were able to go home, Ken took disability leave from his job as a computer management consultant. "He was in one of those depressions where you can't get out of bed before noon," remembers Carol. After a month of this, she insisted he see a therapist. "Going into therapy has been really good for our relationship," she says.
Ken wanted to go back to his job, but it had involved extensive traveling, which he just couldn't do anymore. The company cooperated by giving him different assignments that allowed him to work at home most of the time. Carol says that it would have helped her own morale if she had had an outside job, too, but she had the children to care for. She also needed to be available to drive Ken to work, because Minnesota law forbids driving by anyone who has had a seizure within a six-month period.
Much as she and Ken tried to shield the children, the kids were picking up "bits of information" from conversations they overheard. "I don't think our six-year-old thought it possible his daddy might die," she says, but Caitlin, who was on the verge of adolescence, was enraged with Ken. "It took me a while to figure out that her anger was because he'd put this thing into her life that she didn't want to have to worry about. She'd pick fights with Ken, he'd yell back and she'd scream at him, ‘I hope you die.' She didn't really, of course, but she was angry that he might. She told me, ‘I just wanted to be a kid.'"
Again, therapy helped Ken. "He realized when he got angry back at her, he was doing the same thing she was. Now he figures out what his anger's about and how to be healthy with it."
Anger was something that Carol, herself, was struggling with, too. "Everyone kept asking how Ken was, but nobody asked how I was doing. There I was, keeping the whole ship afloat. And Ken was preoccupied with himself. I feel selfish saying this, but I kept thinking, ‘When is it ever going to be about me?'" For a long time, she admits, she was jealous of friends who were planning trips or buying new furniture. I'd say, ‘I wish I had their problems,' as if their lives were perfect. Of course I knew nobody's is." Realizing she needed to have something for herself, Carol enrolled in a writing course. "You have to have something else to focus on," she says.
Two years ago Ken had another seizure. "Off and on he was also having focal seizures," smaller episodes that might range from leg twitches to "spacing out for about 20 seconds," says Carol.
Last year Ken was in the hospital for ten days to have his anti-seizure medication re-evaluated. "I was doing the single parent stuff, plus driving back and forth to the hospital every day. I didn't want to be the one with a tumor, but it's hard to always have to be the normal strong one. You feel guilty for being angry. I'd tell myself he didn't have a choice about this-but neither did I!"
It's now four years since the diagnosis. Ken has "no visible cancer cells," reports Carol. Doctors at the San Francisco hospital, where his MRIs are sent, are pleased with his progress. "We're beginning to believe he's going to live," Carol says.
Although Ken has some memory problems, it's not clear if they're stress-related or long-term. Even so, a very determined Ken, who was never a runner, trained for six months and ran the Twin Cities Marathon last September.
Carol admits she is still "up and down," but feels that lately she's been handling things better. "And Caitlin's doing well because she feels there's more normalcy in her life."
Ken is working a part-time schedule, mostly at home. Carol's been free to take a job, which helps with the formidable medical bills. "We have good coverage, but there are still so many expenses."
She's also writing a memoir. "I need to write the things I was afraid to say to family and friends, put things down in an unflinching way. I want everyone to know this is the way it is."