September 8, 2004

Sickness and Health
A Wife's Struggle With Cancer Takes An Unexpected Toll
As Lizzie O'Donnell Recovered, Tensions Rose in Marriage; Angry Words
in the ICU
A Truce Over Twin Beds

By AMY DOCKSER MARCUS
Staff Reporter of THE WALL STREET JOURNAL

In their more than three decades together, one issue has posed the
biggest threat to James and Elizabeth O'Donnell's marriage: cancer.

Nearly 10 years ago, Mrs. O'Donnell found a lump in her breast. At
first, she wasn't worried. A routine mammogram a month earlier showed
no signs of a tumor. But the lump grew so quickly during a two-week
vacation in Hawaii that Mrs. O'Donnell went to see her doctor days
after returning home to Indiana. The doctor ordered an immediate
biopsy. The 42-year-old mother of three boys was diagnosed with
advanced breast cancer and told she had only a 5% chance of surviving
the next year.

She proved the doctors wrong. Mrs. O'Donnell began chemotherapy
treatments in February 1995, underwent two surgeries, including a
mastectomy, and finished her chemotherapy in August 1995. She is now
considered cancer-free. She and her husband call that a miracle and
say they know how lucky they are. "We had the same goal," Mrs.
O'Donnell says, "to keep our family together."

Her survival came at a price. Mrs. O'Donnell, now 51, has chronic
health problems arising from her cancer treatment. Just six weeks
after her last chemotherapy session, her heart failed -- a side effect
of the drugs used to eradicate the cancer. She underwent a heart
transplant in June 1996. That, in turn, caused other problems.
 
The medications she must take every day to ensure her body doesn't
reject the heart have weakened her bones, causing spinal deterioration
and making her walk with a slight limp. In the past 18 months alone,
she has endured shingles, double pneumonia, kidney disease, and two
incidents when clots blocked her pulmonary arteries, causing her to be
hospitalized. She never stops wondering if the cancer will return
someday.

The cancer and related health problems have put the O'Donnells'
marriage under siege. "I ponder sometimes how much has been lost ...
as a consequence of sweet Lizzie's illnesses," Mr. O'Donnell wrote in
1999 in a journal he keeps. "Her breathtaking good looks; her
shapeliness; her breasts; her lovemaking; her lovely tummy; her walks
with me; her ability to be counted on for X or Y; her hair on her
head; her not needing to shave; her constant need of medical care; her
silence when sleeping."

These "all have been 'little deaths,' " Mr. O'Donnell added, "that
have powerfully tugged me to despair and grief."

Thanks to advances in medicine, more people are surviving cancer these
days, creating new kinds of personal challenges. Even as attention is
starting to focus on the many physical and emotional issues cancer
survivors face, marriage remains a topic that makes many
uncomfortable. "We tell patients that if they had a strong marriage
before cancer, they will have a strong marriage after cancer," says a
spokeswoman for Living Beyond Breast Cancer, a support group.

Michael Glantz, an oncologist who treats brain-cancer patients at the
University of Massachusetts Medical Center in Worcester, recently
conducted a study looking at whether couples divorced or separated
more frequently after a cancer diagnosis. Among 214 couples in which
one of the partners had a malignant brain tumor, the rate of divorce
was six times as high as the control group. The vast majority of
divorces were in cases where the wife was sick, not the husband. This
led Dr. Glantz to conclude that "being a female diagnosed with cancer
is a risk factor for divorce," and to call for more study.

The question of whether cancer is a factor in divorce is
controversial, because the overall divorce rate is high and this is
still a new area of research. Some centers, including Dana-Farber
Cancer Institute in Boston and the University of California San Diego
Cancer Center, are experimenting with ways to help couples. New
programs mark a shift from focusing on the individual patient to
looking at "how the couple is faring as a couple with cancer," says
Karen Kayser, a professor at Boston College Graduate School of Social
Work in Chestnut Hill, Mass.

Summer Getaway

Despite the steady decline in Mrs. O'Donnell's health, every summer
the couple spends several weeks in the Catskills. They come to the
home in Elka Park, N.Y., owned by Mrs. O'Donnell's family, where she
spent summers as a girl. Staying in the house, filled with the same
furniture and paintings that have always been there, allows them to
remember a time before cancer transformed their relationship.

This is where they met in 1967. Mrs. O'Donnell, then 14, was painting
sets at the local theater where she met Mr. O'Donnell, who had the
lead in a summer-stock production called "Fancy Meeting You Again." He
was a 19-year-old college student working as a tennis instructor. They
had their first kiss in her parents' kitchen after he brought her home
from a dance. They married four years later, in a church down the
road, when she was 18.

After more than two decades of marriage came Mrs. O'Donnell's cancer
diagnosis. The couple had just moved to Huntington, Ind., from an
affluent Boston suburb. Mr. O'Donnell had given up a banking job to
teach economics at Huntington College, a 1,000-student Christian
school. The Victorian house they bought near the main campus had a
tarp on the skylight and no running water in the kitchen when they
moved in.

At first, they tried not to let cancer overwhelm their relationship.
When one of them felt frightened by Mrs. O'Donnell's treatments, they
asked the other for a "cancer free" period. It could last an hour or a
day, but during this time, they agreed not to talk about anything
related to her health crisis.

On the two-hour drive to Indianapolis for chemotherapy treatments,
Mrs. O'Donnell, an avid gardener, drew sketches, designing an arbor
she asked her husband to build for climbing plants. A stay-at-home
mother, she tried to ensure her sons' lives continued as normally as
possible. She arranged for neighbors to take the boys to school and
sports practices. Her mother moved in for a while to take over cooking
and cleaning.

The couple soon discovered they had extremely different coping styles,
and this became an area of contention. Whenever someone asked Mrs.
O'Donnell how she was doing with the chemotherapy, she gave a
relentlessly positive answer -- even if that someone was her husband.
Mr. O'Donnell began calling her "Svetlana," saying she reminded him of
a communist-era newscaster who put an upbeat spin on any news and gave
out no real information.

In September 1995, about a month after Mrs. O'Donnell had finished her
last chemotherapy treatment, Mr. O'Donnell brought her to the
emergency room. She had a cold and felt weak; they wanted to make sure
nothing was wrong.

The doctors admitted her for tests and that Sunday, when her husband
came to visit, he found her lying in an intensive-care unit, hooked to
a heart-monitor machine. Mrs. O'Donnell handed her husband some
documents explaining the condition doctors had diagnosed. The drugs
that killed her cancer tumor had also severely weakened her heart
muscles. Without a heart transplant, she would die.

Mr. O'Donnell read the information in a panic, his eyes welling up
with tears. But when he looked up, he was shocked to find that his
wife had a smile on her face. "Jimmy," she said, her voice upbeat. "I
don't have cancer."

The pity and sadness he felt seeing her lying in the hospital bed
quickly gave way to another emotion: anger. "Why are you smiling?" he
recalls demanding, his voice rising to a yell. "You have heart
failure. You could die."

Looking back on it now, Mr. O'Donnell, 56, says his outburst occurred
because "I felt managed by Lizzie, when what I wanted most of all was
her honesty about her fears."

Mrs. O'Donnell remembers that moment differently. She says her
greatest fear had been a recurrence of cancer, and she felt relieved
to learn that she had heart problems instead. "I had grown to respect
and fear cancer as a pernicious and sneaky enemy," she says. "I felt
the doctors knew a lot more about how to treat heart failure."

They realized their journey as a couple had suddenly diverged. They
lived through the same events but experienced them in completely
different ways. "We had always said we were in this together," says
Mrs. O'Donnell. "But we weren't moving through it the same way."

If Mrs. O'Donnell was a half-hour late from a shopping trip, her
husband feared the worst and lost his temper when she returned. He
kept asking doctors questions at appointments, long after Mrs.
O'Donnell felt there was a need. By April 1996, when Mrs. O'Donnell
was admitted to the hospital to await her heart transplant, she no
longer told him when the doctors would be coming to see her. She gave
him only the broadest outlines of what the doctors said.

Once, Mr. O'Donnell learned that his wife had seen a gastrointestinal
specialist only after he saw an unfamiliar name on a bill. When he
asked her about it, she told him that one of the consequences of her
weakened heart was that other organs were starting to shut down. "I
picked and chose what to tell him based on what I thought the toll
would be to him," she says. "In preserving Jimmy, I was also
preserving myself."

Holding Back

Mr. O'Donnell constantly wanted to talk about what was happening. But
his wife held back, because she started to feel that talking about it
was a waste of time and too depressing. "Jimmy was always aware and
ready to discuss what everything was like," she says. But how could
she explain how it felt to have their youngest son, Jonny, then 7,
visit her at the hospital, and her pain at having to say goodbye,
unsure if she would ever see him again? "I don't think he could
understand what that was like, leaving the children," she says. "I
thought even if I talked and talked, there was no way he could ever
know what that was really like."

Mr. O'Donnell says he was overwhelmed. "I wish for relief," he wrote
in his journal in 1996 while his wife stayed at the hospital awaiting
the transplant, "but it doesn't come." A born-again Christian like his
wife, Mr. O'Donnell continued to go to church and keep up with a
Bible-study group they had joined. But he found that his faith -- not
only religious faith but also in his marriage's ability to withstand
such chronic stress -- were being tested.

"There was never an issue that I would be unfaithful to Lizzie in
finding someone else," he says. "It was an issue of being unfaithful
by not being loving."

At the time of her mastectomy in 1995, Mrs. O'Donnell worried that the
loss of her breast would affect their relationship. "I knew the
adjustment would be hard," she says. But Mr. O'Donnell had an even
more difficult time accepting the dramatic body changes that took
place following Mrs. O'Donnell's heart transplant in June 1996.

Within weeks after the heart transplant, she gained more than 60
pounds. The high doses of steroids she was given to prevent her body
from rejecting the new heart caused hair to grow all over her body.
She says she had "so much hair on my arms that I could braid it, and
rolls of fat on my back." The sudden transformation, she says, "was
horrifying to me."

Mr. O'Donnell says he often watched their son Jonny play with his
mother, oblivious to the fact that she looked completely different.
"It didn't matter to him how his mother looked, that her face had
grown round like a moon because of the steroids," he says. "He loved
her and was blind to those changes and I was not. It is not something
that I am proud of."

Since Mrs. O'Donnell's cancer treatment, Mr. O'Donnell's own health
had started to deteriorate. He couldn't sleep at night. During the
day, he felt his heart racing. He was anxious all the time. In 1997,
he fell asleep at the wheel, drove off the road and ended up in a
swamp. He emerged without a scratch.

The couple could no longer do the things they had always enjoyed --
walks around the neighborhood after dinner, trips abroad to explore
gardens, spontaneously deciding to go out for the evening. Mr.
O'Donnell started taking on household chores his wife no longer had
energy to do: making beds, washing dishes, laundry, vacuuming and
grocery shopping. He dropped Jonny off at the bus in the morning and
was there to pick him up in the afternoon. Sometimes Mrs. O'Donnell
would feel better and be able to return to some of her old routines,
but "it was always unpredictable," says Mr. O'Donnell.

He felt guilt, he says, about his inability to cope with all the
changes. He even wondered if stresses he had put on her had somehow
contributed to her cancer. But what he felt most, he says, was fear,
that his wife would die and he wouldn't know how to carry on. When he
pressed her to write letters about her wishes for her children that he
could give to the boys if she died, she refused. She says she felt
that doing so would have been admitting she was giving up. "You're
going to slip away and I won't know key things," Mr. O'Donnell told
her.

Four-Page Letter

Over the years, he kept pressing his wife to talk more. In March 1999,
he wrote her a four-page letter outlining how overwhelmed he felt by
taking over household chores, while continuing to work. He felt they
needed to talk more about how their lives had changed, and that
knowing how she felt might help him deal with his own fears. She
thanked him for the letter and said they would discuss it. But when
two weeks passed without her raising the issue again, he took matters
into his own hands.

The couple had been attending Bible-study sessions every other Sunday
night with male professors from the college and their wives. The
couples met to discuss a particular passage and share events in their
lives. At an April 12, 1999, session, Mr. O'Donnell brought up his
communication problems with his wife. He asked the group members to
pray either for the couple to communicate better or for Mr. O'Donnell
to accept their level of communication as it was.

Mrs. O'Donnell was shocked by the unexpected public airing of their
difficulties, even among people she considered friends. She ran from
the room crying. When they got home, she spent the night in the
bedroom downstairs and refused to discuss the incident. "I felt at
that point that there had been enough talking," she says. "Things are
a mess," Mr. O'Donnell wrote in his journal that night.

From time to time during Mrs. O'Donnell's illnesses, she slept alone
downstairs. Sometimes she stayed there when side effects from her
chemotherapy treatments kept her in the bathroom all night long.
Before the heart transplant, she was simply too weak to climb the
stairs to their bedroom on the third floor. But even after the
transplant, she began sleeping downstairs more often.

Talking about the physical changes in Mrs. O'Donnell's body didn't
seem to alter the tension. "I remember telling Jim, 'I can't help
what's happening,' " she says. "It didn't make any difference to Jim.
I could see the look in his eyes." Yet, there were times, she says,
when she understood her husband's difficulty adjusting. When she
looked in the mirror, she didn't recognize herself. "It struck me over
and over afresh every morning, just like it did Jim," she says. "I was
not blind to what was happening to my body. Neither of us liked it."

When Mr. O'Donnell was invited to a function at the college, she would
spend considerable time dressing up and fixing her hair. "I did
absolutely the best I could, and there was no comment, no 'you look
nice tonight,' " she says. "There was nothing. It was a great sorrow
that I carried." Mr. O'Donnell doesn't dispute the hurt he inflicted.
"I was a monster," he says.

Each evening, Mrs. O'Donnell would suggest that she sleep downstairs
so she wouldn't disturb her husband. Sometimes he would protest, but
in the summer of 1999, he stopped. Mrs. O'Donnell snored at night,
most likely due to physical changes from the medications she was
taking. The medications also resulted in her having uncontrollable leg
spasms at night, causing her to kick him. For three months, they
didn't sleep in the same room. "I was giving up," he says about that
period in their marriage.

But Mrs. O'Donnell insisted they find a way to be together. She
suggested giving up their queen-size bed and buying two twin beds. Mr.
O'Donnell resisted, saying they had to sleep in the same bed or in
different rooms. Hoping to save their marriage, he eventually agreed
to the change, and they started sharing the same room again. He bought
ear plugs and a sound machine to deal with the snoring.

He also spoke with a doctor about his constant fears, and was taking
medication that helped lift his depression. Mr. O'Donnell says he
began to accept the idea that "there is to be no closure."

In some ways, he says, his prayers at the Bible-study session that
caused his wife to cry had been answered. Mrs. O'Donnell tried to talk
more about her feelings. And he began to realize that her refusal to
endlessly discuss her fears was one of the ways she kept going. "I
started to wonder if by pushing her to cope in a different way, I
might be hurting her, maybe even shortening her life," he says.

While their communication has improved since then, the issue still
comes up. A few weeks ago, Mr. O'Donnell wanted to talk again about
all they had endured. Mrs. O'Donnell demurred. "These are the good
times," she told him. "Everything is fine."

Both of them have spoken about their experiences in efforts to help
others in similar situations. Earlier this year, a collection of Mr.
O'Donnell's letters about his wife's cancer diagnosis and heart
transplant, called "Letters for Lizzie," was published by a Christian
publishing house. The letters chronicle the vicissitudes of Mrs.
O'Donnell's illnesses and some of the difficulties they faced in their
marriage.

At the back of the book there is a picture of a much younger Mrs.
O'Donnell, holding Jonny as a baby. Her dark hair is cut in a
fashionable style, and there's a wide smile on her face. It bothers
her, she says, to hear her husband talk at book readings about the
toll her illnesses have taken on the way she looks. She says it makes
her feel he's implying, "I was once so beautiful and then poof." He
says he doesn't feel that way.

When she is feeling well, Mrs. O'Donnell now volunteers 20 hours a
week at a hospice where she was once a patient. Mr. O'Donnell says he
is moved by her commitment. He recently nominated her for an award
recognizing exceptional volunteers who work under challenging
circumstances. Mrs. O'Donnell won the award this year for Indiana.
Sometimes, Mr. O'Donnell says, he wonders "if she tells the patients
things about her sickness that she won't tell me." Mrs. O'Donnell says
that isn't the case.

As the years have gone by, they have increasingly found themselves
alone. Their older sons, Nick and Andrew, have finished college. Nick
is married. Jonny is now 16 and has his first girlfriend. He didn't
want to come to Elka Park this summer with his parents. They realize
this may have been the last summer he'll spend with them.

In the past few months, there have been what the couple calls "moments
of grace." Mrs. O'Donnell has felt better and had more stamina. She is
taking fewer steroids these days, so the side effects are less severe.
Earlier this year, she suddenly started losing weight. At first, she
thought the cancer was back and had her doctor run full body scans.
All the tests were negative. Doctors don't have an explanation for the
weight loss but it has marked a change in their relationship.

"I don't feel beautiful to myself," she says, "but I recognize myself
again. I look more like the way I imagined I would look at the age of
51." Mr. O'Donnell has been more relaxed and affectionate, she says.
Mr. O'Donnell acknowledges the weight loss has made a difference. "I
regret feeling put off by her. I knew it wasn't right," he said. "I
look at what is happening now as a gift."

Last month, Mrs. O'Donnell's sisters came to visit. They sat on the
porch with the couple and recalled the two years when Mrs. O'Donnell
had cancer and then a heart transplant as a nightmare that had
thankfully ended. But for Mr. and Mrs. O'Donnell, it is never over.

Mrs. O'Donnell says she is always aware that the average transplanted
heart lasts 10 years and that she has already had hers for eight
years. If the medication she is taking to help her kidneys work loses
effectiveness, she faces the prospect of dialysis or a kidney
transplant. They don't make long-term plans. "I never think about what
we'll do together when Jim retires," says Mrs. O'Donnell. She says the
furthest out she has planned is this Christmas, when her son and
daughter-in-law will visit.

They also try to see themselves as any middle-age married couple. On a
recent day, Mr. O'Donnell, dressed in khakis and a blue polo shirt,
brings out lemonade and they sit next to one another on wood chairs
painted the same lime green as the porch, their feet touching under
the table. Last month, they celebrated their 33rd wedding anniversary.
They still like to take long drives together, explore old homes and
find a new restaurant to try.

Last summer, Mrs. O'Donnell was too weak to walk in the hills
surrounding the house in Elka Park. Her husband, sons and
daughter-in-law hiked to a monument erected in 1868 by a grieving
husband whose wife died in childbirth. Mr. O'Donnell wanted to take a
group picture at the top for the family's Christmas card, and Mrs.
O'Donnell was upset she couldn't go. This year, she and her husband
walked there together. She climbed to the top, looking out at the
trees and mountains, "and saw a view I thought I'd never see again,"
she says. The next day, she was so weak she spent the entire day in
bed. But she believes, "If Jim and I didn't have these tiny moments
together, we wouldn't make it."

A few weeks ago, Mrs. O'Donnell was in the kitchen of their Elka Park
home when Jonny suddenly asked her, "Mom, do you think that someday I
will be happily married?"

The question caught her off-guard. She thinks the issue was on his
mind not only because he has a girlfriend but also because of what he
has seen his parents endure during the past 10 years. She says she
didn't hesitate with her reply. "Yes, Jonny," she told him, "I think
you will be happily married."

Does she consider herself happily married? "Yes," she said. "I do."

Mr. O'Donnell's reply was more cautious. "In an imperfect world, I am
as happily married as I think anybody can be," he said.

A look of surprise seemed to flicker across Mrs. O'Donnell's face. The
plate of pasta she cooked and was about to serve remained suspended in
her hands as she considered what to say next. "That sounds like a
qualifier to me," she said, her voice calm and soft. "But I think I
know what you mean." Then another meal together got under way.

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