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THE PLAN: Having found
a donor, she hopes to return to Alaska before surgery in April. By FRANK GERJEVIC
Anchorage Daily News
Published: February 20, 2006
Photo by DAVID MONSON
Iditarod champion Susan Butcher, center, poses with the medical
team treating her for leukemia at the University of Washington
Medical Center in Seattle on Jan. 1.
Susan Butcher has a bone marrow donor -- and a backup donor too.
So far she's weathered the second round of chemotherapy well. And
now the plan is for a bone marrow transplant in early April.
For a woman suffering acute myelogenous
leukemia, "it's as
good as you can get," Dave Monson, Butcher's husband, said
last week from Seattle, where Butcher is being treated at the Seattle
Cancer Care Alliance at University of Washington Medical Center.
The donor match is a 32-year-old woman, and the match is excellent.
The backup is a man in his 30s. Butcher and Monson have no idea
who they are.
"They could be from Palmer and they could be from Panama," Monson
said. "We're thrilled."
That thrill is tempered by the knowledge of what lies ahead. Iditarod
comparisons are a natural; Monson likens his wife's position now
as being at the halfway point, Cripple or Iditarod. The team is
strong and willing. Nome is hundreds of miles away.
But if this is another Iditarod, then Butcher knows the way.
She was diagnosed in early December. In late January, Monson made
this observation:
"She's now practically a hematologist
herself."
No surprise there. The woman who ruled the Iditarod Trail Sled
Dog Race in the late 1980s has taken on her affliction with the
same determination that led her to win the race four times.
Monson said that during Butcher's first
round of chemotherapy in December, her doctors would "cram" outside
Butcher's door before going in to see her.
She's no passive patient. As dozens of Alaska's top mushers could
have told the doctors, you'd better be on your game in dealing
with Susan Butcher.
A BUMP IN THE ROAD
But her battle with leukemia is not all steel and drive. "It's
a little hard to swallow goin' back down," she said in late
January from Fairbanks. "It's definitely a bump in the road."
Even though she knew another round of chemotherapy
was coming, Butcher couldn't help but contrast where she was
going to where
she had been -- home in Fairbanks, with her husband and daughters,
Tekla, 10, and Chisana, 5. "I've had three weeks up here," she
said shortly before heading south. "It's been so much fun."
The return to Seattle also brought home
what a long, hard trail lies ahead. She endured the first round
of chemotherapy (although
she had some gastro-intestinal complications, and was weakened
enough to suffer in Fairbanks' January freeze, allowing that she
had trouble at 35 below). That success was "a big victory
at the time, but a small victory overall," she said.
"They take you down to where it's life-threatening," she
said.
If all continues to go well, Butcher will undergo the transplant
during the first week of April. Right before the transplant, she'll
have a final round of chemotherapy. That's the round that essentially
kills her bone marrow. The transplant has to work in order for
her to live.
"You just jump out and believe your parachute is gonna open," Monson
said.
That jump will begin about four months of
hell as Butcher's body adjusts and rebuilds its immune system
from scratch. "You're
about as sick as you want to be without dying," Monson said.
If she responds well, she could be back in Alaska by late summer.
Then she will face from six months to two years of walking on
eggshells, avoiding illness and gathering strength. During that
time, she must avoid houseplants, pets, cold and time spent in
crowded places like church or her daughters' schools. No dog driving.
Butcher knows that her ability to focus with intensity is a tremendous
asset now.
BRAVERY AROUND DEATH
She has gathered her family, her wider Alaska family, memories,
music and pictures. Before leaving for Seattle at the end of
January, she loaded her iPod with music -- including Alison Krauss,
Tim O'Brien, Kate Rusby, classical, show tunes, country, classic
rock. She made sure to include lot of "booming, uplifting
music" -- the kind that used to make up her "winning
tape" on the coastal stretch of the Iditarod from Unalakleet
to Nome.
"We love the theme from 'Pirates of the Caribbean,' " she
said, along with music from "Amadeus" and "Les Miserables."
And "Cold Mountain." Old-time spirituals have a special
place for her too. She said she realized that "a lot of them
deal with death." Then, she said, she refined that realization
to "bravery around death.
"I guess I probably think about that a lot now," she
said.
Susan Butcher aims to live, however, and
to that end she's drawn on her record of strength. Her home is
full of pictures of "our
life and Alaska, our home in Eureka, our dogs."
Veteran Iditarod photographer Jeff Schultz
has put together a collection of pictures for her, "pictures of when I was doing
things of strength and health." Pictures her daughters have
drawn are included too.
These images have helped her to "remember who I am when I'm
layin' in that hospital room." She said that's hard to do
with "14 IV bags" and people coming in to take your vitals.
"You start to become the 'hospital
you.' "
Nature is an antidote to being a patient. That's why Butcher wanted
a room with a view. During her first stay in Seattle, she could
look outside at trees and a canal connecting Lake Union and Lake
Washington.
"You'd see people sculling in the morning," she
said.
WELLSPRING OF STRENGTH
That helped Butcher tap her wellspring of strength, her need to "go
inside myself and connect with the power of nature, Mother Nature."
She's drawn strength from her fellow leukemia
sufferers too, watching them "heroically fighting" their cancers. Of the eight
patients in her ward during December, four were Alaskans, she said.
Monson said several other patients hospitalized are scheduled for
transplants about the same time. "We'll all be in this together," he
said.
"All you can do is hope that all the rest of it goes well
for you," Butcher said. Hope that the marrow match works.
Hope that you can endure the cure.
Getting well will take everything she has. She and her husband
are profoundly grateful for the outpouring of the more than 1,000
Alaskans who had their blood tested during a Dec. 30 drive to find
a match for Butcher and others in need of a bone marrow transplant.
E-mails and cards have flowed to the family; friends have helped
with everything from meals to providing a two-bedroom home away
from home in Seattle. Monson said that when he wrote in passing
on the Web site www.susanbutcher.com that he had run out of coffee,
he received 10 bags in the mail.
'WHAT A FAMILY ALASKA IS'
That support finally overwhelmed what Monson said "was very,
very hard ... accepting help from people."
He said a friend remembered a comment by the writer John Steinbeck
that sometimes the best thing you can do for people is to let them
help you.
The humbling thing, Monson said, is that you can't repay everyone.
Then you realize that you, like the people helping now, will do
what you can when it's your turn.
Butcher and Monson are taking their turn already. Their Web site,
www.susanbutcher.com, has links to information about becoming a
bone-marrow donor that should help enlarge the pool and save more
lives. Monson has joined Team in Training runners to raise money
for leukemia research.
But right now they're receiving help, and much has come in messages
of care and encouragement, from people describing what an inspiration
Susan Butcher has been to their lives.
"I haven't even come close to reading them all," Butcher
said. But sometimes "Dave'll just sit and read to me."
Monson said the kindness of friends and
the kindness of strangers have brought home "what a family
Alaska is."
Butcher and Monson plan to come home to
that family for three weeks in March before the transplant. "Just in time for the
start of the Iditarod," Butcher said. She would like to be
here for the beginning. If her strength allows, she would love
to take a day and fly out on the trail with her daughters. Alaskans
would love to see her there.
Until then, they continue to let her know they're pulling for
her.
"Can't hear it too many times," she
said.
Frank Gerjevic can be reached at fgerjevic@adn.com or at 257-4308.
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