Waldenstrom macroglobulinemia

Edwards officer battles rare incurable cancer with fortitude drawn from faith, family

Each week Maj. Mark Schaible must pass a test to stay alive. He doesn't have to wrestle a bear, conquer a mountain or solve the theory of relativity. It's harrier than that.

Schaible's weekly trial is a blood test. The only numbers that matter to the 35 year-old commander of the 95th Transportation Squadron at Edwards Air Force Base, Calif., are the ones forecasting his red blood cell count -- his hematocrit. Passing the test means another week of life. And another sheet of ordinary looking bond paper gets filed in a faceless white binder along with four inches of other medical history on his desk.

Failure is an option he doesn't speak of much this onetime motocross champion, Air Force test pilot and winning triathlete reminds his friends. It only surfaces two years of memories that have left his family exhausted and confused his doctors bewildered and others wondering how he made it this far.

That's because Schaible has a rare cancer called Waldenstrom's macroglobulinemia. In short, WM is a type of blood and bone marrow cancer that has caused his immune system to rage out of control, leaving him literally on his deathbed more than once. It also turns his blood into a syrupy mess of red and white cells he struggles to control, and has robbed him of his spleen and gall bladder.

All of this can be attributed to a nagging pain in his hip that started in April 1998. Schaible discovered the condition while he was still able to soar above Edwards' high deserts, working as the Air Force Flight Test Center executive officer and checking off the squares on his career plan.

Diagnosis, physical therapy and recurring doctors' visits revealed nothing. So, he lived with it. Then, he began losing triathlons against opponents he would normally smoke, feeling spent and tired at the finish.

The local flight surgeon finally recommended he visit a neurologist at Balboa Naval Hospital in San Diego who might be able to pin down the cause of the maladies. To eliminate other issues, however, the surgeon took a cursor blood test. After what technicians thought were botched results, the flight docs ordered him back immediately for a second test.

The results were not good. The second test revealed his blood was swimming with cancer cells, and his red cell count was below 17 percent. A normal result is between 46 and 54 percent. Upon his Friday morning arrival at the flight doc's office, he was pumped with two units of blood. "He was amazed I was still walking," Schaible said. The doctor set up a visit with an oncologist for Monday.

Further, a weekend home proved to be a slippery slope. At first, he had trouble seeing in bright light. Then, he started having "night sweats," waking up in pools of perspiration.

He was rushed to Balboa, where doctors began extensive tests, including a lymph node and bone marrow biopsy. Results showed more than 90 percent of his bone marrow was cancerous.

"On the good-bad scale of things, this was not good," Schaible recalled. "And then some other things began happening."

Uphill battle

Specifically, his immune system began attacking and eating his remaining good blood cells. He couldn't produce enough blood to stay alive, and his body was so deprived of oxygen, he couldn't keep from shaking. Plus, he was running fevers of 102 degrees. His 158-pound, just under six-foot frame lost 15 pounds of mass. Doctors began to pump him with new blood. So much, in fact, his blood type changed from O negative to O positive and back again.

His parents, Barb and Bob Schaible, rushed from Michigan and were on hand to help their son with his fight. Despite his condition, mother and son were able to exercise daily, walking more than 200 laps around a small receptionist area in the cancer ward each day.

The son was trying to keep things positive, but after a month in the hospital, his father buckled under the stress and returned home. Mom was struggling to keep her chin up, keeping busy playing games and talking. But nothing took her mind off her son's condition.

"I felt like my whole world collapsed," she said. "At first, they kept it from me, I think, to protect me. That made me angry as hell."

In the course of almost two months, two gallons of blood transfusions, 121 miles of laps around the hospital ward, and two different variations of chemotherapy, Schaible's blood count started to rise.

"I spent a month and a half in the hospital trying to get the dosage right to get this cancer cremated," he said. "I wanted to get out of the hospital and sustain my own life without using other people's blood."

That time came in June 1999, when he went home and back to work. However, his eagerness to return to duty was met with the realization that the Air Force might medically retire him. He was already off flying status, and based on the prognosis of an incurable cancer, friends and colleagues thought he would have to hang up his uniform.

At the same time, Schaible was rebuilding his failing marriage and coping with the realization he might not be around to see his son, Evan, enjoy his first birthday.

As the summer went by, Schaible and others were happily proven wrong on many accounts. The Air Force (through a medical board) returned him to duty, though there would be no flying. His marriage and the rest of his life were on the mend thanks to renewed interest in his faith. Even more important, he helped blow out the candles on his son's first birthday cake.

He persevered with getting his body into shape after stopping a chemotherapy protocol that was killing the nerves in his hands and feet, Soon after, he took first place in the

Edwards triathlon. Later, he whipped up at a national level mountain bike race, taking first in his class and beating 90 percent of the other competitors. This physical part of his comeback, he said, was fundamental to returning to flying status.

Relapse hits hard

But in November 1999 Schaible started to feel weakness in his legs. "At first, I thought it was because I started to taper off the steroids. But after about three weeks, I was having trouble getting off the couch," he said.

At the end of his wife's office Christmas party, Schaible had to be hauled out to his car by friends. He couldn't walk. Not because he had too much fun, but because he was paralyzed by the same antibodies that had wreaked havoc on his system before. He and his wife, Elizabeth, phoned his oncologist, Naval Capt. (Dr.) Fred Millard, and it was back to Balboa Hospital, another 200-mile journey to the Pacific coast. By the time they reached the hospital, Schaible couldn't move any of his limbs, and had lost control of the left side of his face. His blood count was dropping, and he was fading fast.

His mother returned, but was still having a difficult go with it all.

"There's nothing worse than thinking about losing a child. Mark insisted that we all be positive, but until you saw him or knew what I was going through ..." she said, pausing, her voice breaking. "It's not the way it is meant to be. You are meant to go before your children."

Elizabeth was riding her own roller coaster of events, raising the couple's son while keeping a handle on her husband's health.

"There was tremendous disbelief and fear because of the potential loss," she said. "It got so bad so quickly."

To bail him out of this latest lurch, doctors offered a number of solutions. One of those included physicians jamming needles as thick as pencil points into his arms, and having vampirelike machines suck his blood out twice a week. He was also receiving new kinds of chemotherapy, experimental drugs and physical attention. "Basically, the doctors said they were going to throw the kitchen sink at it, and see what happens. That's exactly what they did," Schaible remembered.

It worked. Within about three days, the Edwards triathlon champion could move with a walker. More triumphs followed, and by January 2000, Schaible said things were looking good for a full recovery. "I was able to walk normally, and I started working again," he said.

Another attack

Then came another test. His immune system was attacking another healthy portion of his bloodstream, this time the part that helps heal wounds, the platelets. Doctors bumped up the steroid dosage, and temporarily forbid him to exercise. It worked. The count rose enough for him to enter and win another triathlon the very next day.

Seemingly healthy, the steroid dosage was lowered, but his platelet count dropped, too. In March 2000, doctors determined the best course of action was to remove Schaible's spleen, the source of production for many of the antibodies that were ravaging his system, and return to the high amounts of steroids. It took the major nearly six weeks to recover.

But one month later, his recovery was met with another roadblock. His constant anemia created gallstones, blocking vital ducts, nearly killing his pancreas and causing the need for surgeons to remove his gall bladder.

Since then, after the punctures, slices, injections, cuts, heart-breaks, elation and tests of faith, Schaible has reached what doctors deem a "flat spot" in the road. He's been the transportation squadron commander since August 2000, and he'll attend Air Command and Staff College in the summer. He still harbors a "burning" need to return to the cockpit, and in February, Schaible received a letter saying if he could taper off the high doses of steroids he's taking, he might.

Schaible's oncologist warned on the side of caution. "It's very hard to say," Millard said. "Waldenstrom's macroglobulinemia is a disease we generally don't think of as curable."

Friends credit Schaible's survival to his positive outlook, his unyielding faith and an iron will. Schaible said the entire series of tests he's endured are a series of unexplainable miracles that have helped save his marriage, given him more time with his son and offered a new point of view on his life.

After 14 years of marriage, Elizabeth believes her husband will be soaring through the skies above Edwards soon, and returning to good health.

"I knew from our experiences that this was a blessing," she said. "The lowest point was that first week. After that, we were fine."

Schaible said he looks forward to future tests, including the ones he'll file in that thick white binder on his desk.

"Life takes my mind off cancer," he said. "It's a crap shoot every time I get blood work done, but that's the only time I focus on it. You can look to tomorrow, but it's better living today."

Perhaps Schaible's strongest testimonial on the future comes from the person who kept a close watch on his fellow aviator, his self-professed mentor, and former boss, who watched his executive officer excel and rise above all the tests thrown his way.

"He's committed to an Air Force career, and he has great promise," said Maj. Gen. Richard Reynolds, flight test center commander. "I'm sure wherever he goes he'll do a great job. He's expressed desire and commitment, and has shown the ability to serve a full career. At this point, I expect him to do that."

Where to find cancer support

Discovering cancer can mean an immediate life change for you and members of your family who feel the ripple effects of the disease.

In addition to the resources your clinic or military hospital may offer, the American Cancer Society, among others, also offers resources available at its Web site, www.cancer.org, including:

* Search for local resources. Here you will find information about American Cancer Society programs and support services in your community. You'll also find resources provided by other organizations that provide support and assistance to those facing cancer. Users enter their five-digit ZIP code and get a geographic return of agencies available.

* Assistance living with cancer. This section offers a number of documents from pre-diagnosis through treatment and more. It also provides information about cancer, prevention and risk factors and a list of frequently asked questions.

* Cancer profiler. The cancer profiler is an interactive decision support tool. It enables cancer patients and their physicians to make better treatment decisions using information from evidence-based, peer-reviewed medical literature. Users select the type of cancer and create a username and password. Once the profile is created, users have access to a treatment decision tool, personalized treatment options and other advice based on clinical experience.

Users can also customize options for specific types of cancer to gain a greater insight to options, treatments, pain management and more.

In addition, links to other Web sites are provided, including the Centers for Disease Control (wwxv.cdc.gov/healthlcancer.htm), which offers a robust library of information on cancers and how the disease affects the world at large.

COPYRIGHT 2001 U.S. Air Force, Air Force News Agency
COPYRIGHT 2001 Gale Group