Bone marrow donor

Mary Benson, left, and Karen Woys met at Benson's home in Cathlamet for the first time since Benson was a bone marrow donor for Woys.

Bill Wagner / The Daily News

It's after midnight in Baltimore, late November. A woman sits up in her hospital bed, typing into her blog.

"01:04:42. Started the Infusion —

"A beautiful big 1342mL bag of O+ marrow (just looks like blood) from Germany – no new blood type for me! Michael regaled me with rebirthday cards from him and the kitties, as well as a cute little fiber optic Christmas tree. I love presents!

"… 03:07:25 the flow continues, more than half finished now.

"… 04:26:32 Complete!!!!!"

Seven exclamation points signal that Karen Woys is cheating death.

In a room at Johns Hopkins Hospital, the Maryland mathematician and computer consultant has just received a shipment of marrow full of blood cells that match her own ("no new blood type for me!), but are free of the disease that threatens her life.

In three hours, the one-and-a-half-quart supply of marrow has begun to "find its way" into Woys's bones. "Marrow looks like blood but is not blood," she explains. "It is spongy material composed of fat and stem cells."

American media is flush this season with vampiric fantasies. But a far more dramatic story is playing out in this real hospital room, and in cancer treatment centers around the world.

The fresh, healthy blood cells pumping through Woys's veins are not from Germany (the nurse made a wrong assumption) but from the other direction, a place called Cathlamet on the southern rim of Washington state.

On that same November night, Mary Benson rests in a Seattle hotel, tired and sore from the surgery that just harvested her bone marrow. Benson and Woys know nothing about each other. But from that moment, the blood cells that keep them both ticking will be the exact same stuff.

'How could anyone not do this?'

Benson, a nurse who lives on the Columbia River in Cathlamet, decided to register as a bone marrow donor after David Maligro, a physicians assistant at Longview Orthopedic, shared the struggle of his grandson to find a bone marrow donor.

"I saw David a lot, and talked to him," Benson said. At a related bone marrow drive at the lake in July of 2008, she signed the registry of the National Marrow Donor Program. She had the cheek swab that starts the process and went about her life.

Benson's blood type did not provide what the Maligro boy needed. But it turned out to be a match for a someone else, somewhere else, waiting for a shot at survival.

Last fall, Benson got word that she was a "perfect match" — the blood cells in her marrow were so similar they heightened the odds they'd be accepted into the blood stream of the recipient.

"I was called in 2010," Benson said, two years after she had joined the registry. She went through a round of blood work in Astoria — and waited. "Once I did the blood work I was called and told I was a potential donor. There's a one-in 500-chance of being a match" for anyone in the registry, she said. "It was remarkable."

Even at that point, Benson could have bowed out, but never considered it.

"Everyone I encountered was wonderful," she said. "It's inconvenient, but it's not that painful. How could anyone not do this?"

The recipient would have to go through treatment to prepare for Benson's marrow. When the medical stars had aligned, Benson would go three times to the University of Washington Medical Center, finally undergoing general anesthesia and a surgery that would extract two quarts of marrow from her hip and spinal cord.

Two quarts sounds like a lot, but according to the Columbia University's Medical Center website, it represents about 2 percent of a person's bone marrow, which the body replaces in four weeks. Benson, who does clinical trials in her at-home business, said it took her six weeks to fully regain her energy.

The marrow would be secured and flown with a courier to Maryland, where Woys was waiting at Johns Hopkins.

'And life is like a song ...'

From diagnosis to this night, it had been a somewhat agonizing journey for Woys and her husband, fellow mathematician Michael Hubner.

In 2010, when routine blood work revealed that Woys had Myelodysplastic Syndrome, or MDS, with additional dangerous cellular abnormalities, it shocked the vivacious, 56-year-old, cat-loving bon vivant and consultant.

"I've always been healthy," she said.

Her mother and other relatives lived to be 90, and Woys didn't even feel sick. "Sure, I was tired and out of breath sometimes, but I assumed it was simply due to being overweight and out of shape."

Not only were she and Hebner in shock from the diagnosis, but right off the bat, Woys's oncologist and hematologist recommended a speedy bone marrow transplant.

Enter the numbers person. Two, to be exact.

"We're both mathematicians by training, and the statistics were overwhelmingly dismal," Woys said. "Michael and I were frightened that instead of prolonging my life, a transplant would simply deprive me of quality of life for the short time I might have remaining."

She was put on a new chemotherapy drug. Within months, her dangerously low white blood cell counts were bouncing back. But those months had done what they tend to do.

"We realized how quickly time was flying," Woys said. In the spring of 2011, she started to rethink the idea of a transplant. "Even one or two years wasn't enough."

As Michael said in an article on a website devoted to aplastic anemia and MDS, "It is amazing how quickly the bizarre becomes ordinary."

Woys began the treatment process that would ready her for the transplant, which would culminate in intense chemotherapy to destroy her own marrow in the days before the transplant.

To chronicle her passage, she started a blog called "Mausmarrow."

Labeled with "Day plus 5 ..." for how many days she had thrived since the transplant (routinely celebrated by marrow recipients as a "rebirthday"), Woys wrote witty, detailed accounts of her outer and inner life.

She posted gutsy photos of herself, shots of Michael and their beloved cats, news of family events and landscaping projects, helpful links and comments from fellows in the marrow community.

Each blog post was headed by a few lines from a song that matched what was going on.

Woys would not give away the song title until the next blog post, instead letting her friends and others reading the post guess the songs and their performers.

Day 241 I want it long, straight, curly, fuzzy ...

Snaggy, shaggy, ratty, matty

Oily, greasy, fleecy

Shining, gleaming, streaming

Flaxen, waxen

Knotted, polka-dotted

Twisted, beaded, braided

Powdered, flowered, and confettied

Bangled, tangled, spangled, and spaghettied!

"Tomorrow marks my 8 month anniversary. Food is still not the greatest, and I'm running a bit tired but all things considered, I'm doing remarkably well and am very happy to be enjoying the summer. My hair is growing a lot more slowly than I expected. I still have little more than a thin, frizzy stubble. .."

(That one was from the musical "Hair.")

All of this provided a counterweight to what goes on with bone marrow recipients.

Common effects include excruciating aversion to food, problems with eyesight and dry mouth, and other physical and emotional repercussions. Patients ricochet from fear and feeling like hell to wild hope and back again.

In 2010, 41 percent of NMDP transplants, representing more than 2,100 transplants, were for patients aged 50 and older, like Woys. Survival rates for patients with the level of severe aplastic anemia Woys has, and whose marrow comes from unrelated donors, as hers would, is a hair under 60 percent.

That means that 60 percent of those who receiver a transplant from a stranger live at least a year.

Even with a perfect match, the donor's marrow might not "engraft" successfully. When it does work, "It takes about three or four weeks for the donor's marrow to engraft but much longer — possibly a year or more — to fully function," Woys said. "Recovery is different for every patient."

If things don't work out, she said frankly, families of recipients may look for someone to blame. And that's why donors and recipients are not allowed to communicate or meet until at least a year has passed since the transplant.

Woys has had no graft-versus-host disease, however. Her counts blood counts have steadily improved, she said, and her doctors praise her recovery. She availed herself of acupuncture and made herself eat every day even when she didn't feel like it.

Her focus shifted to finding the donor.

In Cathlamet, said Benson, "I thought about her every day for a year."

Then, the email arrived.

Day +408

I said, 'Hello, Mary Lou

Goodbye heart

Sweet Mary Lou

I'm so in love with you

I knew Mary Lou

We'd never part

So hello Mary Lou

Goodbye heart

"Michael and I are very excited! I've been corresponding with my donor, Mary Lou, all week. She's a delightful person, as I knew she must be. We're flying to Washington state to meet her and her family in May, so I'll finally be able to thank her face to face. In the meantime, we'll continue to be in touch. Getting to know each other is both interesting and fun! Words can't begin to describe how I'm feeling."

Woys and her husband planned a spring trip to Washington state, she and Mary kept emailing, and the Bensons took up residence on Mausmarrow.com.

May arrived, and with it perfect weather, and with it Karen Woys and Michael Hebner. Sitting on the sofa next to Mary Benson, Woys said, "She saved my life. I had to thank her in person."

Several days later, Mausmarrow purred with news of the meeting.

Day +536: Reunited and it feels so good...

There's one perfect fit and sugar this one is it.

We both are so excited 'cuz we're reunited, hey hey ...

"Mary Lou and I were "united" for the first time on November 30, 2010 when I was

infused with 1342 ml of her life-saving bone marrow. We finally met face to face

nearly 18 months later on May 16, 2012. It's hard to say which of us was more

excited with ear to ear grins, bone crushing hugs, and instant rapport. It was a

fantastic afternoon all the way around.

"Michael and I first visited with Mary Lou and her husband, Jeff, and her

adorable snoodle, Lucy, for a couple of hours, enjoying the perfect weather and

breathtaking view of the Columbia River from the deck of their beautiful home.

We exchanged stories and photos, both eager to know every detail of our

respective experiences with the donation. ..."

When Mary's sisters and their parents Helen and Harlan Burrus arrived, Woys reached out to embrace Helen with a big "Hello, Mom!"

Jeff tended the free-standing stone fireplace he has built on their riverfront grounds, where he makes wood-fired oven pizza. The meal was chosen carefully: Pizza is what Woys and Hebner have always had to celebrate their anniversary, and photos of their favorite pizzeria appear on Mausmarrow.

They may have a long way to go next year, however. Jeff's pizza "was, without exaggeration, the best I've ever had," Woys posted on her blog.

Michael treated her to a helicopter ride over Mount St. Helens, and the two couples shared a special dinner in Astoria.

Woys described it on Mausmarrow: "We had the pilot, Darren, and aircraft, a shiny new red Eurocopter, all to ourselves for an hour of spectacular views and interesting narrative."

On the way home, they stopped in Colorado, where Woys rested up in a cabin from a respiratory infection and rasping cough she picked up on the trip.

"I've been in contact with both my hematologist and my transplant doctor via email, and they believe I've picked up the virus that's going around and should be fine without medical attention until I return home Tuesday night, as long as I'm having no fevers or shortness of breath."

She will always be in recovery, wary of germs and watchful of blood counts. A bone marrow transplant does not ensure that Woys will live to be 90. It does give her more moments to savor pizza, more hours to soak up a blue sky over the Columbia or a cabin in the Rockies, more months with Michael, more time being.

Last year, when together they had questioned the transplant, they weighed the "very slim chances of a positive outcome" and the "horrible stats." Then they changed.

From Atlantic to Pacific, they reached across the country and found the right stuff. "I only had a little time left," Woys said. "I wanted more."

Editor's note:

"Thrill me to the marrow" is from "Judy Blue Eyes," sung by Crosby, Stills and Nash.

The words "And life is like a song" are from "At Last," Etta James's trademark salute to finding love.

"From Atlantic to Pacific ... gee, the traffic is terrific" is from "I'll be Home for Christmas," sung by everyone.

Angry
0
Sad
0
Funny
0
Wow
0
Love
0

Load comments