“Is it cancer?” she asked. “Is it myeloma?”
“No,” the doctor said, rubbing his forehead. “It’s just … wrong.”
Nearly a year after the diagnosis, the Gibsons are still learning how wrong, and confusing, amyloidosis can be. Amyloidosis (am-uh-loy-DOE-sis) is a disease in which abnormal proteins build up in organs. It’s not cancer, but it’s life-threatening, and although the cause is unknown, it occurs in only one of every 125,000 people.
Gibson is one of the unlucky ones. But as he coaches L.D. Bell for a 20th season while finishing a second round of chemotherapy, Gibson said he feels lucky. Even blessed.
“I’m probably at an all-time low physically,” he said. “But spiritually, it’s been an all-time high.”
Gibson, 49, started having cramps in his calves last March. He felt tired all the time, and his routine of jogging two or three miles per day shrunk into a lap around the baseball diamond. Five-minute “power naps” before practice stretched to 40 minutes.
“One day he woke up and he just couldn’t get out of bed,” said Cherie Gibson.“And to miss a day of baseball practice? Something wasn’t right.”
Something was very wrong, but Gibson fought through it as his Blue Raiders fought through the playoffs. The players knew their coach wasn’t feeling well, but Gibson didn’t tell them anything.
There wasn’t much Gibson, who graduated from Euless Trinity in 1982, could tell them. It wasn’t until a few days after L.D. Bell’s season ended in the Class 5A Region I semifinals that a bone marrow biopsy revealed the disease, in which amyloid proteins can spread throughout the body and cause organs to fail.
“The way they described it to me is that it’s like an oil spill,” Gibson said.
Fortunately, the oil spill was caught early. There were traces of the amyloid formation in his heart, but the amyloid was mainly affecting his kidneys.
Traveling for treatment
In July, Gibson traveled to the Mayo Clinic in Rochester, Minn., where he underwent chemotherapy and received a transplant of his own stem cells. He and Cherie stayed in a hotel near the clinic for six weeks before returning in late August.
Gibson didn’t feel much improvement physically in the months that followed, but he was astounded by the support from high school baseball coaches, current and former baseball players and the L.D. Bell community.
Before the Gibsons’ trip to the Mayo Clinic, friends held a prayer vigil for the family at the L.D. Bell baseball field. A benefit dinner and auction, the“Gib Back,” was held in July to offset medical costs.
“It was like all these relationships that you’ve established coming together like puzzle pieces,” Gibson said. “It was really a George Bailey moment, the It’s a Wonderful Life deal. You get to see the impact you’ve had on people’s lives and they’ve had on your life.”
Paul and Cherie Gibson returned to the Mayo Clinic for the 100-day checkup in November but didn’t get good news. The amyloid was not in complete remission, and another round of chemotherapy was needed.
The chemotherapy would be six three-week cycles and stretch into baseball season. Gibson, usually stoic in his battle with the disease, broke down at the thought of not getting to coach.
“I would really like to coach my son,” he told the doctors.
Gibson is getting that chance. Now on his sixth chemotherapy cycle, which is administered through pills and steroid injections, he’s back in the dugout. Gibson coached his oldest son, Bryce, who is now a 20-year-old junior at Texas. Blake, 18, is a senior third baseman.
“Some days you can tell he’s up-tempo, and some days it’s hard for him to get upbeat,” Blake said. “Sometimes the players have to be more upbeat and be better leaders because it’s harder for him.”
L.D. Bell (9-14, 4-3 in District 6-5A) has struggled with injuries but is in the thick of the playoff race. Gibson, who has a coaching record of 393-229, doesn’t take care of the field anymore and needs to sit down more during practice and at games.
His instructions to players might have a little less fire, but he hasn’t lost any motivation.
“He’s still as passionate and intense as ever,” said Hebron baseball coach Steve Stone, Gibson’s longtime friend and competitor. “I’m sure he’s had some dark moments, but I’ve never seen them. I’ve never heard him complain one time. All I’ve heard is that he’s in a great place in his life.”
The fatigue and edema frustrate Gibson, who laughed when he talked about being in bed by 8:30 some nights. The former junior college baseball player at North Lake has always had an active lifestyle, and he wants to start jogging again.
The hope is that Gibson will be able to run once he recovers from his last cycle of chemotherapy and his kidneys begin functioning better. He’s well enough now to take on a regular teaching schedule.
Lessons in patience
There is no cure for amyloidosis, but if it can be controlled, Gibson’s kidneys can begin to heal. The healing process is slow, so Gibson might not feel substantially better for another year — or longer.
“The amyloid teaches you patience,” he said. “That’s what the doctors say.”
Gibson’s patience will continue to be tested by a disease he doesn’t understand fully. The more he and his wife learn about it, they said, the more confusing it is.
But amid clouds of uncertainty, Gibson’s outlook is clearly positive.
“When they tell you you’ve got an 8-in-a-million chance of getting it, you know it’s happening for a reason. You know the Lord is using you for something,”he said. “We’ve really experienced the good in people and we’ve seen how strong friendships can be. Unfortunately, sometimes it takes tough times to experience that.”
Follow Matt Wixon on Twitter at @mattwixon.