Alexis K. | Survivor Insight Series
- Stories from Survivors
- Jan. 4, 2012
Alexis K. smiles warmly, sincerely, when she hears friends talk excitedly about their upcoming wedding anniversaries, especially those celebrated milestones at 10, 20 and 30 years together.
Those are the ones she may never see.
Alexis married Christian two months ago in Houston, beaming with happiness as she walked down the aisle, a bride so beautiful she glowed, eyes filled with love for the man who cherishes her with the same joyful heart.
They became soul mates united as one, so much in love and so prepared for a life together.
She just wonders how long it possibly can last.
Alexis has mesothelioma, a cruel cancer, and since her diagnosis she already has exceeded the life expectancy many doctors thought she would have.
Her anniversary smile is a wistful one.
“We’ve talked about this, and Christian still sees us growing old together. He really doesn’t want to believe all this (about mesothelioma). He is the eternal optimist, almost in denial,” said Alexis, whose last name is being withheld over privacy concerns. “He sees us having a nice long marriage, eventually buying our own little house, maybe adopting another dog. But I have to be realistic. I can maybe see some of that stuff, but I can’t look too far ahead. I can’t pretend the mesothelioma isn’t there.”
Four-Year Mesothelioma Survivor
Alexis, 42, was diagnosed with peritoneal mesothelioma in 2007. She opted for an aggressive surgery that removed half of her diaphragm, with hopes of removing all of the cancer. Several more surgeries followed. Follow-up chemotherapy made her miserable.
She lost her previous job during treatment, losing the health insurance she desperately needed and still doesn’t have, preventing the normal, follow-up care.
She lives with the uncertainty of her cancer’s progression. Many of the follow-up procedures were inconclusive. She hasn’t seen an oncologist in more than two years.
Together, Alexis and Christian live a humble, almost bohemian life in Houston, renting a small apartment in the city, riding scooters to work each day. Neither has a car. They can’t afford one. Their dog is named Lucky, a rescue case they found as an abandoned puppy who spent his first six months almost as sick as she was.
She works now at a small boutique nearby, needing regular breaks to regain her strength. Christian, 56, is a lifelong musician, the leader of a punk rock band and well known in Houston’s musical circles for his guitar and a spiked Mohawk haircut that hasn’t changed in 30 years.
But local notoriety doesn’t pay very well. Christian retired from his full-time job with the city after 20 years, which makes adding a new wife to his health insurance plan cost prohibitive. Medical bills still come in the mail from her treatment more than two years before. They pay each month as much as they can, which is not nearly enough.
‘Surreal’ and Lavish Wedding
Their wedding ceremony was a gift from Wish Upon a Wedding, a national charitable organization that provided every bell and whistle, making it as lavish as they could have dreamed. From sharp tuxedos and beautiful gowns to floral arrangements matching their hair, the wedding was storybook.
“It was almost surreal. I have this terminal illness, and they throw me a wedding to celebrate the fact I’m still here,” Alexis told the Mesothelioma Center. “It was so wonderful, like a victory dance, and something I’ll never forget.”
Although Christian and Alexis dated for two years before she was diagnosed, she tried three times to break off the romance before the wedding because she was worried how another long illness with a loved one would affect him. He had buried his mother years before, nursing her through a long and painful decline that broke his heart, leaving him with scars that never healed completely. She didn’t want him to suffer through anything like that again.
“She loves Christian with all her heart, and she’s more concerned about how this mesothelioma will affect him,” said Julie Zarate, a close friend of Alexis’s who organized a fundraiser in Houston to help pay some of her friend’s medical bills. “She doesn’t want to see him hurt again. This is a woman who is in a lot of pain, but she’ll never complain, never let on. She’s the one who is picking up everyone emotionally.”
As part of the wedding ceremony, it was Christian who legally changed his last name to hers instead of the traditional, other way around. He did it to honor her and her fight.
“It was natural for me to change mine,” he said. “She really is a one-in-a-million girl.”
It was Christian who took Alexis to the hospital the first time, on the back of his scooter, a trip that led to an earlier-than-normal diagnosis of mesothelioma, which gives her some hope for the future. Those who live longest with mesothelioma cancer are usually those whose disease is discovered in an early stage.
Christian rushed Alexis to the hospital just before dawn when she awakened in excruciating pain, a gall bladder gone bad. She refused to let him call an ambulance. They scrambled the two miles on his scooter. She literally was draped over his back. They laugh about that ride today.
Removal of her gall bladder led to the shocking discovery of mesothelioma in her abdomen. She was referred to cancer centers in New York and Washington, D.C., which were more familiar with her type of mesothelioma. Yet her surgery was done at nearby Methodist Cancer Center in Houston after others turned her away.
“My oncologist told me, ‘I don’t know exactly what to do with you, but we’ll figure it out,’ ” she said. “I don’t think I fit the parameters that the other (cancer) centers were looking for. But the surgeons at Methodist did a wonderful job.”
Recovering in the hospital after another debilitating chemotherapy session, she asked her oncologist for a temporary release to see Christian’s band play a show nearby. Although the doctor first balked at the idea, he later relented, allowing a friend to take her from the hospital briefly. When she came into the club, Christian was stunned — and elated.
She really doesn’t know how much the cancer has spread. She has not been back to an oncologist since finishing her first round of chemotherapy. The last tests she had, to see whether cancer was gone, were inconclusive.
Alexis has good days and some bad days but rarely does anyone other than Christian know the difference. She can’t sleep with half a diaphragm that has been rebuilt. Her dog and her friends make her smile. Christian still makes her beam. Friends always talk of her generosity.
At her insistence, they rented a car not too long ago and drove to Austin, Texas, to visit his mother’s grave.
“She really wants me to remember my mother,” Christian said. “I kind of wonder if there is a parallel there. She always says to me: ‘Never lose your memories.’ ”
Life after Mesothelioma
Alexis is busy making them for herself and for others. She is expert at touching the lives of people who are strangers, and they often return the favor.
At the Jubilee boutique where she works, Alexis greets customers with a smile. Most have no idea how sick she is. Some of the regulars do, and many come just to visit.
One customer brought her sister who is struggling in the fight against breast cancer. Alexis told her story, lifting the spirits of the sister so much that she now comes in regularly as a friend.
Ladies at a nearby church who heard about Alexis’s plight made her a quilt to keep her warm. They, too, return to Jubilee to visit Alexis.
“It’s kind of cool now to hear people say, ‘You don’t look or act sick.’ They start to see cancer in a different way when they see me. You don’t have to be depressed all the time,” Alexis said. “I’ve met so many wonderful people since my diagnosis. And people are praying for me.”
Christian has done his part, too, often serving as his wife’s assistant around the apartment. His punk rock persona on stage isn’t anything like she sees at home when they are alone.
“There is a realization of what’s eventually going to happen with Alexis, but I’m not willing to accept that,” he said. “Although it (mesothelioma) can seem like the elephant in the room sometimes, I don’t look at her that way. We’re just two people happy to be in love.”
Tim Povtak is an award-winning writer with more than 30 years of reporting national and international news. His specialty is interviewing top mesothelioma specialists and researchers, reporting the latest news at mesothelioma cancer centers and talking with survivors and caregivers.