Butcher prepares for marrow transplant

THE PLAN: Having found a donor, she hopes to return to Alaska before surgery in April.

By FRANK GERJEVIC
Anchorage Daily News

Published: February 19, 2006

 

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.