Caregivers: Mesothelioma’s Forgotten Casualties

Stories from Survivors

Linda Chitwood is one of the unsung heroes, an often forgotten warrior in the horror of asbestos-related cancer.

She is a caregiver, a life she was dealt almost nine years ago when husband Lannie Chitwood was suddenly diagnosed with malignant pleural mesothelioma.

Doctors gave him a death sentence. She essentially received one, too, turning her world equally upside down.

She became one of too many.

“Sometimes, I think caregivers are the forgotten casualties in all this,” Linda said from their home in rural southeastern Virginia. “When your once-healthy life mate is suddenly told he has 18 months to live, you feel helpless. It’s devastating. The grieving process begins. You’re never the same.”

Her husband underwent aggressive extrapleural pneumonectomy (EPP) surgery, radiation and chemotherapy at the Duke Cancer Institute in 2007. He has fought off each subsequent recurrence — with more radiation, more chemotherapy, more surgery and more angst — and remains alive today.

Linda has been through it all.

“There is such a range of emotions you go through as a caregiver,” she said. “It just dominates your life, blows to smithereens any plans you had. I went through a period where I was resentful, then felt guilty for being resentful. But you’re also so thankful for the great medical care, and thankful for all the good times we’ve had together. He could have died long ago.”

An Unlikely Victim

Lannie was an unlikely victim of mesothelioma, a rare and aggressive cancer most often caused by occupational exposure to asbestos. He was in a low-risk profession, a Virginia game warden who worked in fresh air every day. He never worked in Virginia’s coastal shipyards, urban factories and construction areas where asbestos exposure is more common.

Yet, he was diagnosed at 57, a year after retiring early. He had been healthy and happy and trying to talk Linda (three years younger) into planning her early retirement, too. She was a nurse, and they were mapping out their future together.

His diagnosis changed everything for them.

“At first, I was overwhelmed, frightened, with no positive feelings whatsoever. When you’re in your 50s, you’re looking forward to everything you can do in retirement, and then boom, all your dreams are gone,” Linda said. “I didn’t have a ray of hope.”

What she learned, though, after wading through the gloom and doom that comes with the initial diagnosis, was that long odds can be beaten. A good quality of life is attainable. And caregivers can continue their lives, too.

She Wrote a Book to Offer Hope

In 2012, Linda published “Fear 2 Faith: Our Journey Through Mesothelioma.” It’s an eye-opening book about the highs and lows, heartaches and heartwarming stories that have helped others deal with a mesothelioma diagnosis. She talks today a lot about her faith in God.

“With the book, I just wanted to let people know there is hope out there. Mesothelioma doesn’t have to be end of the line, and not necessarily a death sentence. Originally, I saw it as slow murder that depressed everyone,” she said. “But Lannie has continued with a relatively good quality of life. There can be reason for optimism.”

She talks about the importance of finding great medical care and a specialty center that truly understands the disease. At Duke they found Dr. David Harpole, a leading thoracic surgeon who specializes in mesothelioma.

They made the three-hour drive to Duke so many times they memorized every billboard along Interstate 85. They know every bump in the road and every tree along the way.

For a typical chemotherapy session, they leave the house at 6 a.m. and return home by 9 p.m. For her, it is a day off work and a day with her husband. He recently finished 17 days of radiation treatment spread over four weeks, hoping to stop the latest tumor growth near his esophagus.

Before then, it was a four-week chemotherapy cycle to halt the tumor growth threatening his spinal cord. These trips to Duke have been steady over the last 8 1/2 years.

They don’t go to the Virginia Tech football games on weekends like they once loved. They have dropped plans for an extended vacation to New England, where she grew up, to see the fall foliage.

Background in Nursing Helped

Being a nurse — and understanding the health care system better than most — was a blessing for Linda. She was the one who originally listened to her husband’s lungs, rushed him to the hospital and started the diagnostic process. She can differentiate today between a serious reaction and a not-so-serious reaction.

“Overall, being a nurse has helped. I know how to navigate the health care system, which most people don’t. I knew what questions to ask, and when to call the doctor. I knew what mesothelioma was, too,” she said. “The disadvantage is that I never had the luxury of denial. We went from diagnosis to anticipatory grieving.”

Caregivers Need to Take Care of Themselves

Her advice to other caregivers is to take care of yourself as well — physically and mentally. Let friends and families help with caregiver chores. Let them help around the house. Don’t run yourself into the ground and compound the problem.

“Caregiving can be terribly isolating if you’re not careful. It may sound selfish, but you have to take care of yourself, too. If you don’t, it’s hard to be a good caregiver,” she said. “It’s like the pilots say on the commercial flights: When the oxygen masks drop down, put your own on first, then tend to your loved ones.”

Linda retired last fall. For years, they needed her job for the top-flight health insurance coverage she received. Otherwise, they would have gone broke from the medical bills that come with a mesothelioma diagnosis.

She often would check on her husband, go to work and then attend to him once she returned home. Linda scheduled her vacation and sick days around his medical needs. Her co-workers understood, but she still had a job to do.

Even without working as nurse, she is busy now. She also helps care for her 95-year-old father with stage I Alzheimer’s disease. He lives 30 minutes away in an assisted living facility, and she sees him three to four times each week.

She wonders how her husband will respond the next time he needs chemotherapy. The sessions have grown progressively worse.

“At Duke, they told us that Lannie is the longest-living mesothelioma patient they have, so there is no road map to follow. It’s a crapshoot sometimes,” she said. “But I want people to know that life goes on. There is hope out there. You’re going to have your dark moments as a caregiver, but you’re not alone.”

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