For Susan Butcher there's no turning back

The four-time winner of the Iditarod Trail Sled Dog Race has been fighting leukemia since she was diagnosed in December. Doctors killed the blood and bone marrow cancer with repeated rounds of chemotherapy. But to give Butcher the best chance at a cure, she's gambling on an experimental treatment that started with massive amounts of radiation and chemotherapy and ends today with a transplant of stem cells from a man she does not know.

The last push started May 4. Butcher checked herself into an isolated room at the University of Washington Medical Center. Doctors injected her with a high dose of radioactive material to kill any remaining leukemia cells.

For the next week, the musher who thrives in open spaces was confined to a small room lined in lead to stop the radiation she emitted from harming others.

The material injected into Butcher made her radioactive, somewhat like a nuclear reactor, said Dr. Jan Abkowitz, her physician in Seattle. Doctors couldn't enter either, so Butcher took her own temperature and drew her own blood. The radiation coming from her body could be especially harmful to her two young daughters, so, hard as it was, 11-year-old Tekla and 5-year-old Chisana flew back to their home in Fairbanks.

Butcher's husband, David Monson, stayed in Seattle but had to follow rules. He couldn't hug his wife as she struggled with the nausea and vomiting that followed the injection. He could open the door to her room but had to stand outside, 20 feet away. He'd holler to her, which meant conversations lacked privacy and sometimes got confusing when nearby patients thought he was talking to them.

As days passed, doctors tracked the amount of radiation her body kicked out. They watched for the levels to fall low enough that she could leave the room and not be a danger to others.

Meanwhile, Butcher stayed inside, watching the Kentucky Derby, reading a copy of "King Leopold's Ghost" and cycling, sometimes for three hours or more each day, on a stationary bike covered in plastic to protect it from her radiation. She typed messages to friends and family on her plastic-covered computer with glove-covered fingers.

She stared at the walls, decorated by her daughters with artwork and countless family photographs. One photo showed her picking berries on a mountaintop. Another caught her racing along the Iditarod Trail.

Chisana left her mother with a drawing that tells a story: A magic moose finds the last diamond that's able to do all the things Chisana wants it to do. It makes snow warm. It keeps creatures alive forever, even slugs. But did she mean to suggest it could save her mother?

Monson said he doesn't know if she was thinking that at all, but he's optimistic.

"We hope that last diamond works."

BUTCHER'S 'DO-OVER'

While his wife was in isolation, Monson said, he felt as if they were standing on the edge of a bridge, preparing to leap off tethered only to a bungee cord -- looking down, feeling safe where they are but knowing that at some time they're going to have to dive and rely on the cords to save them.

So they take the plunge.

"Then," Monson said, "it's all about faith."

Butcher's bungee cord includes a string of treatments that began this winter. For several years, she has battled a blood system disease called polycythemia

vera that caused an abnormal increase in red blood cells. A small percentage of people with this develop leukemia, an aggressive cancer, said Abkowitz. Butcher is one of those few.

She found out in December that she had two problems to battle. Her acute myelogenous leukemia caused her white blood cells to plummet, putting her at high risk for infection. Abkowitz said treatment was needed immediately.

Within days of diagnosis, Butcher started chemotherapy in Seattle. In January, the family returned home to Fairbanks. They were back in Seattle in February for round two of chemotherapy. In March came another break. When she finally felt well enough, Butcher flew to Ruby to welcome her friends and former competitors as they mushed up the Iditarod Trail. Then she headed to the beaches of Hawaii.

In early April, she and her family flew to Seattle one more time. She started a month of getting her body ready for a stem cell transplant. She lay on her side, she said, her eyes tearing from the repeated pokes of a spinal tap. Doctors placed a catheter into her upper chest, creating a port for various treatments she'd need. They biopsied her bone marrow.

On the day she checked herself into the isolation room, she received the radioactive injection. For the next seven days, the material did its job while it slowly left her body.

The door to her isolation room was opened Wednesday. On Friday, Saturday and Sunday, she received repeated doses of chemotherapy to kill cancer cells and also prepare her body to accept someone else's blood stem cells.

Today, Butcher will lie in a machine and be blasted with total body irradiation -- one more attempt to help her accept the transplanted cells, Abkowitz said.

That is the last step before what Monson calls Butcher's new life.

At 51, the famed musher will start her second half-century with a body run with new blood cells. Someone else's cells.

"It's your new birthday," Monson said. "It's a do-over."

ANTICLIMAX

Butcher's first round of chemotherapy last December put her into remission, and she has stayed in remission ever since. Abkowitz said that means doctors can't find evidence of remaining leukemia cells.

It also means that even though her often-braided hair has fallen out, Abkowitz considers Butcher healthy.

So why would a healthy woman opt for more treatment, a regimen that comes with painful side effects, the threat of infections and a week of isolation from her family?

Because remission doesn't equal cure. It's also possible that some leukemia cells are still hiding inside. Doctors think it's likely that Butcher wouldn't be cured unless she had a stem cell transplant.

Blood stem cells live in the marrow inside bones. Stem cells can make red blood cells needed to carry oxygen through the body, white cells that fight infections and platelets that control bleeding, Abkowitz said.

The treatments Butcher received during the past two weeks did more than kill leukemia cells. They also killed her normal blood cells and stem cells.

Friday morning, before the next round of chemotherapy, Butcher said she felt nauseated and tired when walking. She called the isolation "easy" but said she was feeling sick much of the time and too nauseated to eat. In the course of a week, she lost up to 10 pounds, she said. The only thing that tasted good to her was the berries Monson picked up at Pike Place Market.

"I felt pretty rotten, but it's not so bad," she said.

"I got a rhythm to my day, and I just sort of did it."

As of this morning, Butcher's body isn't producing new blood, nor does it have the necessary cells to fight infection. Butcher is dependent on a stem cell donor to restore all of that. Doctors couldn't find a donor match in her family, so she turned to a global registry. Some people don't find a match that way either; Butcher was lucky, however, and found a donor and a backup donor.

Donors are volunteers and can back out for any reason. Abkowitz said the transplant team made sure the 35-year-old man was still willing to help before Butcher's body was prepared for the new cells.

"We're at a can't-turn-back point," Butcher said.

While Butcher was receiving her radiation and chemotherapy, her donor was receiving injections of a drug that pulled stem cells from his bone marrow into his blood stream. When ready, he was hooked up to a machine. One needle pulled the blood from his arm, feeding it through the machine that removed the stem cells Butcher needed. Another needle returned the remainder of the blood to his other arm, a process that typically takes three to four hours.

Those donated stem cells will be rushed to Butcher today. After weeks of isolation and treatments, the final transplant seems minor. Abkowitz called it anticlimactic. Butcher will sit down, and the bag of donated cells will be fed into her blood system through the port in her chest. The transplant takes 60 to 90 minutes. She likely won't feel a thing.

"Those stem cells know to traffic to the marrow and set up shop there and grow as though they're Susan's," Abkowitz said. "They're rescue cells."

They will restore her blood production and her immune system cells, and those cells can kill any leukemia left hiding inside her.

NO GUARANTEES

Butcher's months of treatment came with hazards. The transplant is meant to help, but it can harm her too. Butcher has more than a 50 percent chance of developing some form of what's called graft-vs.-host disease, Abkowitz said. Cells from her donor could attack cells in her lungs, skin or elsewhere. This could lead to more pain, infections and other reactions -- some of which can be deadly.

"It's experimental, and there are no guarantees at all," Abkowitz said.

But the doctor said it fits the personality of a woman who calls herself a competitor and accepts challenges, even when the odds are against her.

Butcher doesn't talk publicly about the odds of this treatment working.

"I'd be crazy if I didn't tell you I'm worried," she said. "It's a huge deal."

She knows the long list of side effects and serious problems that could develop, but maybe she'll only get a few of them.

"Somebody has to beat the odds, so why not me?" she said.

If all goes well, the donated stem cells will create a safe number of new blood cells for Butcher within about two weeks. She'll be closely watched in Seattle for about three months. By late summer or early fall, she could be back in Fairbanks.

Even though she'll be back at home, Butcher knows she's at risk for infection, so her passions of mushing dogs and gardening will have to be put on hold.

But Monson says coming home at the end of summer means they'll be just in time to get the girls back for their first day of school -- at least one step back into normal life.

---

Daily News reporter Ann Potempa can be reached at 257-4581 or apotempa@adn.com.