A Mesothelioma Caregiver’s Grateful Ending
July 19, 2018
Linda Chitwood, a retired nurse who lives in southeast Virginia, spent 10 years as the primary caregiver for pleural mesothelioma patient Lannie Chitwood, her husband of 42 years.
For a decade, they laughed and cried and tailored their new lives together around a relentless cancer that often dictated their schedules.
Linda learned plenty during that time, hoping now to help others by sharing her insight and providing hope for caregivers following her path. Lannie died in 2017 at the age of 67.
While watching two of their five grandchildren recently at a public swimming pool near her home, she shared her story with Asbestos.com.
Linda Chitwood Tells Her Story
Caregiving was a strange dichotomy in a lot of ways.
I knew I was pouring everything I had into fighting a monster called mesothelioma, while knowing that eventually we would lose, and the cancer would kill him.
It was the futility of investing into a situation where I had no real control over the outcome. I knew I was in a battle I was likely to lose.
That never leaves your consciousness.
And yet, you never lose hope that you will be the lucky one who beats the odds. Like the carrot leading the horse, it drives you.
I would tell people, first and foremost, try and be hopeful because miracles happen every day.
Who would have thought my husband — diagnosed in stage 4 — would have lived 10 years with nine and a half being very good years?
We went places. We did things. We enjoyed our lives together.
Lannie and I went to Maine for a second honeymoon in 2015 and had a great time.
His original diagnosis was dismal. The ending was not.
I want people to know not every pleural mesothelioma patient suffers and takes a long road to dying at the end.
That’s not always the case, and it wasn’t for us.
I didn’t fear his death as much as I feared the process of dying. I was haunted for years by the thought of a slow, painful death.
We prayed that he would die quickly and comfortably.
And he did.
He did not linger at the end. For that, I was thankful.
Find the Right Specialty Center
I would tell people first to get the best possible medical care.
The sad reality is there are specialists who know what to do with mesothelioma and doctors who don’t.
And if you go to those who aren’t familiar with the disease, both your quality and quantity of life will suffer.
We started — and ended — at Duke University Medical Center. Everyone there was wonderful. It felt like they were working with you, for you, and not battling you.
They helped us all the way through.
Caring for a mesothelioma patient was like a roller coaster, and you had to learn how to ride it.
There are ups and downs. You enjoy the highs, but you prepare for the lows.
There were times when you didn’t know if you would survive. There were some bright moments, too.
I would also tell people, from the beginning, to find a good record-keeping system.
Otherwise, the paperwork will overwhelm you. You see so many doctors — a thoracic oncologist, a surgeon, a radiologist, a pain doctor, a local doctor — that it all gets complicated quickly. Keeping track of all the medications, appointments and bills is not easy.
Caregiving can consume you. It is like a job — a really hard job.
It can be overwhelming, but it’s doable. I was also caring for an elderly parent for a while. I was working full time until the last couple years.
There are so many doctor appointments, checkups and scans. Our medical center was almost three hours away.
Caregivers Must Find Therapy
You have to realize that life still goes on. There are bills to pay, laundry to do, pets to walk. You have to ask for help, and you’ll find that people will usually want to help you if you ask.
Don’t be afraid to ask.
People also will tell you to make time to take care of yourself, but it’s not that easy. Too many times, there is no time to do that.
Every caregiver needs something to keep them sane and stick to it no matter what.
For me, twice a week I’d go to the gym and work out, and once a week I had choir practice. Those three trips were like my therapy, where I could get away and not think about anything else.
That was very important.
Also, don’t be afraid to cry. It’s OK to cry. Looking back, I didn’t cry enough.
I tried too hard to be stoic. When I did cry, I was in the shower. Don’t try to hold in the tears. That only makes it worse.
Anxiety became an issue for me. Anticipating his CT scans, waiting for the results, and knowing that everything in your life hinges on the next scan, was excruciating.
I couldn’t sleep the night before a scan. Waiting for the results was difficult. I dreaded it so much, I started taking his anxiety medicine.
Discuss Options Early
People will tell you to take life one day at a time. That’s good advice, but I couldn’t do it.
It just wasn’t in my nature, so it was a little more difficult for me.
Also, discuss early in the process what your loved one’s wishes are, and who will be making the decisions about their care.
Lannie did not want to be kept alive on a ventilator. He made that clear. He made all those decisions early, and it worked for us.
The ball was always in his court. My role was to support his decisions. We listened to another man with mesothelioma, and he had become bitter that his wife became like his mother near the end. I didn’t do that. I was always his wife.
During the process, and when it’s over, most caregivers second-guess themselves. I did.
What if we had done this, or done that, would things have been different?
He was on one experimental chemotherapy and doing well, but he didn’t like it. He made the decision to stop it.
He made the decisions right to the end.
Quick Ending Can Be a Blessing
For Lannie, the end came fast.
Ten days before he died, he went for a boat ride with his son-in-law. He enjoyed himself on the water.
The next day, things turned bad and he went into our local hospital.
A few days later, we went directly to Duke University. He died two days after arriving.
Lannie was fighter, right to the end. And we all respected his wishes. The doctors and nurses understood that.
He was on a ventilator, but only for a few hours, just long enough so our children could get to the hospital to say goodbye. That’s what he wanted. When they took him off the ventilator, the medical staff couldn’t believe he woke up to say goodbye.
Then he just faded off. That was his choice. I’m so glad it ended the way it did. It was a real blessing for everyone.
Linda and Lannie Chitwood published “Fear 2 Faith: Our Journey Through Mesothelioma,” in 2012. It details many of their highs and lows, with the heart-wrenching and heartwarming times they had in the first five years battling the disease.