Lung Leavin’ Day

Interview With Cameron Von St James, husband of Heather Von St James, survivor advocate for the Mesothelioma Cancer Alliance and founder of Lung Leavin’ Day

Cameron and Heather Von St James with their daughter

Cameron and Heather Von St James with their daughter

Kara:

Describe what Lung Leavin’ Day means to you.

Cameron:

Lung Leavin’ Day is a special holiday for my family. It is a time where friends, family, and mesothelioma community members can all gather at our home- and connect and share our fears and overcome them together.

Kara:

Why did you decide to create this “holiday”?

Cameron:

Lung Leavin’ Day is a tradition that my family started after my wife Heather was about to undergo a highly invasive and risky surgery as treatment for her mesothelioma cancer. Mesothelioma is a cancer, known to be caused by exposure to asbestos. Taking from the tradition of firewalking- we write our fears on a plate and smash them into a fire. The day is about celebrating overcoming fear, feeling a sense of strength and hope when you need it most, and celebrating Heather’s survival!

Kara:

When your wife was first diagnosed, how did you offer her support?

Cameron:

When Heather was first diagnosed, we were both in a state of shock, and confusion. Wasn’t this a disease that old men got? How could she only have 15 months to live? She is a young and seemingly healthy woman. After Heather’s treatment, I unfortunately had to return to work in order to support our family. So Heather stayed with her parents in South Dakota, while I was in Minnesota working. That was a hard time on us because I had to be a caregiver from a distance. I couldn’t see her everyday, and that was really hard.

Kara:

What do you think are ways caregivers can help cancer patients feel more confident and empowered?

Cameron:

Focusing on the things that you can control is really important. During a patient’s cancer experience they may feel helpless, like there is nothing they can do that is within their power. That is not true, and as a caregiver to be able to contribute positively to their sense of confidence can play a huge role in helping them maintain a positive mental attitude. Showing personal strength and fortitude during adverse times can be contagious, and reminding them that they are loved, and appreciated regardless of their cancer experience.

Kara:

What have you learned from this experience?

Cameron:

That anyone can have mesothelioma. The disease is commonly thought of as an “old man” disease. But there are many people out there like Heather, who were exposed as a child. Heather would wear her father’s work jacket as a young girl to do outside chores, and unknowingly, that jacket was covered in asbestos fibers. There are 60 countries around the world that have banned asbestos, and the U.S. and Canada have not. Anyone could be at risk until there is a global ban on asbestos.

Kara:

What advice would you give to other caregivers whose loved ones have been diagnosed with cancer?

Cameron:

As caregiver, it is really easy to neglect yourself. Don’t neglect your own social and physically wellbeing. If you yourself are not 10 years FBready to fight this, then you have nothing that you can give to the fight. Actively remind yourself to take time for you. Caregivers need care too. Stay organized. Their cancer experience is going to become yours to bear as well, so you have to learn to balance their treatment, symptoms, appointments, and all of that with your own life. When people ask how they can help, if you are organized, you will have specific things that they can help with. Give them the opportunity to be involved in a productive way.

Kara:

What were your thoughts when your wife’s doctor recommended an experimental procedure?

Cameron:

Heather and I were presented with three treatment options based on her diagnosis. If we chose to do nothing, she was expected to live 15 months. If she chose the route of chemotherapy and radiation treatment, she was expected live for 5 years. But there was a third option. It was clearly the riskiest, but it had the potential for her to survive this. The treatment involved a surgical procedure called an Extrapleural Pneumonectomy with Dr. David Sugarbaker at the Brigham and Women’s Hospital in Boston. The surgery involves removing her left lung, pericardium, diaphragm and pleura. There really wasn’t much of a choice between the 3 options, we had a newborn at home, Heather and I knew we needed to get to Boston, and beat this cancer.

Kara:

Did you ever seek a second opinion?

Cameron:

Luckily Heather’s doctor never wrote off her symptoms as something postpartum, and really listened to her concerns. She was referred to Dr. Sugarbaker, a world-renowned thoracic surgeon. We knew we were in the hands of the best care possible. Heather continues to see Dr. Sugarbaker every 6 months today.

Kara:

What do you hope will come from spreading awareness about Lung Leavin’ Day?

Cameron:

We want to provide hope to those going through something similar in their life. Everyone has a battle to fight, and Heather and I want people to know that you are not alone, and you shouldn’t be ashamed or paralyzed by your fear. Once you acknowledge them- whether it is writing them down, or sharing them with someone, you are one step closer to overcoming them.

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