Christian Kidd shares the real-life daily struggles and victories of navigating 18 years of his wife, Alexis, surviving peritoneal mesothelioma.
A Long-Term Mesothelioma Survivor’s Journey
Christian Kidd’s wife, Alexis, was diagnosed with peritoneal mesothelioma in 2007. At that time, treatment options were limited, and the prognosis was bleak. Alexis’s surgery focused on getting the cancer under control with little regard for what her life would be like afterward.
A decade later, in 2017, Christian was diagnosed with stage 3 squamous cell carcinoma. The couple stood by each other as they navigated individual cancer journeys, finding hope and comfort in one another despite the many challenges they’ve faced.
Below, Christian shares what life is like today, 18 years after Alexis’s initial diagnosis. From the fear of recurrence to mental health struggles and the brighter moments that keep them going, Christian’s story is shaped by obstacles — but also by hope.
Life After Mesothelioma Treatment
For those of you who’ve not had the opportunity to have the word “cancer” introduced into your world, you’ll hear all kinds of things about what you might experience during active treatment. You’ll hear it from your doctors, you’ll probably read all about it on the internet despite yourself, and complete strangers will come up out of the blue to tell you about what their uncle’s cousin’s sister’s best friend did to get through their cancer adventure.
To those who have already been through the roller coaster, you know that life during active treatment really is just one challenge after another. Not only for the patient, but for those who love them. Especially the primary caretaker. They get to see everything up close and personal, the good and the not-so-good.
What they don’t tell you is what life is like after you are all finished with the radiation, the chemotherapy, and the initial recovery from surgery. Everyone’s treatment plan is different, though some experiences along the way are common, no matter which variety of cancer takes center stage. (Chemo brain, am I right?)
Life after treatment for a rare cancer with no cure has its own special set of challenges. Because in the beginning and in the middle, everyone is so focused on keeping these slow but hungry mutant cells at bay, little thought is given to what happens after the monster is put to sleep again.
“My wife says it’s because, for the longest time, there was no real way to tell someone with mesothelioma what it might be like. Because most of the time, there was no life after. Not really.”
Medical Advancements and Modern Miracles
These days, with all the medical progress that’s been made, it’s incredible how many people are getting the chance to rejoin the dance of life after their treatment. Even though I never had a doubt in my mind that my sweetheart would make it through, it’s still a miracle that she’s by my side more than 18 years later.
I know these years of discovery have helped doctors and researchers find new ways to detect and treat this disease, which is definitely what we want. Go, team. But I also hope that they’re learning how to help patients navigate what survival really means, because it’s not always easy.
“Between Alexis’s cancer and my own, we’ve found that you don’t always get to step back out onto that yellow brick road and skip your way through Oz. Sometimes the bricks are crumbled and out of place, and sometimes you even stumble.”
Finding — and Creating — Meaning After a Diagnosis
I think one of the biggest pushes for my love to get through those first years post-treatment was being there to help others as they faced their own cancer challenges. While some people seem to be able to ride the roller coaster and get off without ever looking back, others tend to need the grace of someone who truly understands. And no one understands like another person who’s been on the ride.
She trained with a local support group, and then, through her work at a popular local boutique, my sweetheart was able to touch so many people going through their cancer adventures. Or their caregiver. Or a family member. Somehow, they always found her, and she would quietly do her best to give them whatever they needed. Hope, some empathy, a bit of grace, gentle honesty, or a big, long hug. And once she connected with Mesothelioma Hope, she was able to talk with people from all around the world. And while this helped her cope, helping others, she couldn’t help but worry about what was going on within her own body.
Follow-Up Appointments: Like Chasing a Ghost
Usually, after most kinds of treatment, you get to do follow-ups at regular intervals to make sure everything is still going the way you want and those sneaky cancer cells aren’t trying to do a comeback tour. We’ve done this with my own oncologist for more than 6 years, following my diagnosis and treatment for the squamous cell carcinoma that took up residence on the base of my tongue. But because my wife’s mesothelioma presented in such an unusual way from the beginning, none of the usual tests to keep an eye on its growth did her a bit of good.
“Those cells on her diaphragm and free-floating in her abdomen never showed up on a single X-ray, CAT scan, PET scan, or blood test. Ever. So how do you follow up on what’s essentially a ghost in her body?”
At first, Alexis’s oncologist, nudged by the surgical team, agreed to take a physical look via laparoscopy. Unfortunately, it took more than 5 years before she could come back because she’d lost her job and her insurance. She had to wait until the Affordable Care Act (ACA) came to fruition.
When she was finally able to go back to her doctor, he’d changed his mind. He’d determined that it was too risky to do this surgery every year. So, he scanned. And scanned. And scanned some more. And tried out a new blood test. The great thing is that while the scans helped find her thyroid cancer so she could get that treated, they didn’t see anything else. This wasn’t comforting to either of us.
Advocating for Real Support
The last time Alexis saw her oncologist, which was a couple of years ago, she expressed her worries to him about not only being able to know what’s going on (or not) inside of her body, but the pain she lives with every day because of nerve damage from her life-saving surgery. He essentially said that because it’s been more than 10 years since her treatment, she is cured. Even my heart dropped when I heard him say that. He wasn’t interested in paying attention to her questions and concerns, and basically adopted the attitude that if she’s alive, that’s enough. Nothing else mattered.
After that, she knew she was going to have to find someone else to become her oncologist. Someone who would listen and explain things, and not make her feel like she’s ungrateful or crazy for being worried that an incurable disease might still have a chance to grow in her abdomen like some evil weed. But before she could take the first step, life dropped a couple of little bombs into her lap — our laps.
Mental Health Struggles of Living With Mesothelioma
During the COVID-19 pandemic, Alexis quit her retail job because she was concerned about working in a public-facing position. As it turned out, that decision took her out of the frying pan and into the fire. The new job quickly became an incredibly stressful situation that she could not quit without risking her health insurance.
She got depressed. Really depressed. Started having panic attacks. Stopped taking care of herself, outside of the bare minimum that she needed to do to survive. She quit responding to her friends. Abandoned her socials. All the things she loved to do — go see live music, haunt art shows, walk in the woods, and garden — all of it was left behind. She even shut me out to an extent.
“But just as patiently as she helped me with my month of blue Mondays after I realized that my sense of taste wasn’t coming back after radiation, I’m honored to be here for her as she carves her way back to herself. I see little glimpses of it from time to time.”
And even though we both recently were laid off and she lost her insurance once again, she’s actually been talking about when she gets those benefits back so she can start anew with another group of physicians who’ll eventually lead her to another oncologist. It’s going to be tough, essentially having to tell her story all over again. And go through so many tests.
But she’s starting to reclaim the hope that she’ll be able to advocate for herself once more and find someone who’ll actually listen this time. And be kind. And help her find her way to her best life while keeping an eye on that ghost that lives within her.
Get Help Living With Mesothelioma Cancer
Christian and Alexis’s story highlights the intense, sometimes conflicting emotions that can impact long-term mesothelioma survivors. Every day is precious, but there are very real challenges.
If you or someone you care about is facing a mesothelioma diagnosis or learning to navigate life post-treatment, know that you are not alone.
Our team is here to help you with medical guidance, financial assistance, and supportive care throughout your journey. Contact us anytime for free, confidential support.
