Tuesday, June 7, 2016

An Interview with Cameron Von St. James, Caregiver

by Emily Anderson

We talk about the importance of self-care and stress management on this blog, but as they used to say on Reading Rainbow, “You don’t have to take my word for it!” Today we’re joined by Cameron Von St. James, caregiver and human being, for a special interview on his experience. Cameron’s wife, Heather, was diagnosed with mesothelioma just three months after the birth of their daughter Lily. Cameron works as a network analyst, but in his spare time he blogs to champion mesothelioma awareness and share the insights he gained as a caregiver for his wife.

Thanks for sharing your story with us today, Cameron! Tell us a little about yourself! Where are you local, who are the important people in your life, what are you passionate about?
I grew up and still live in the Twin Cities (Minneapolis & St. Paul) Minnesota. Growing up my hero was my father…. and he still is. I always admired his hard work and dedication. He was always striving to provide a better life for his family and he helped make our house a home. My wife Heather and daughter Lily also play a huge role in my life.
But I consider many of my relationships important, friends, family, coworkers, and community members. I also value the friendships I have made in the mesothelioma community. It’s always nice talking to someone who can relate to what I experienced after Heather’s cancer diagnosis.
I’m passionate about technology, networking, woodworking, and blogging as a male caregiver. I also love to ski and teach children at a local resort in the winter and ride motorcycles in the summer.

You’ve helped care for a number of loved ones in your life. What were those different situations?
About 25 years ago I moved back home to help care for my father. He had Parkinson's and Alzheimer's disease. His health deteriorated until he had to move into an assisted care facility. I shared caregiving responsibilities with many of my siblings and was there to support my mother and father in their healthcare decisions. Currently my siblings and I are taking care of our elderly mother who has a few health issues, and I share those responsibilities with them again.
I also cared for my wife and daughter after my wife’s mesothelioma diagnosis. This time I was the primary caregiver and was making healthcare decisions. I was fortunate to have a huge support network help me through this tough time.

In a nutshell, what is mesothelioma? Is it a serious diagnosis?
Mesothelioma is a very rare and aggressive cancer caused by exposure to asbestos fibers. Around 2-3,000 people are diagnosed with it each year in the U.S. Most patients diagnosed with mesothelioma only survive around a year to 21 months after a diagnosis. There is a long latency period, and sometimes it takes up to 50 years to cause symptoms like coughing, fatigue, difficulty breathing, fever, unexplained weight loss and anemia. Mesothelioma develops in the lining of the organs. Heather had the most common type of mesothelioma is pleural. It develops in the lining of the lungs specifically. Other types can affect other abdomen organs and the lining of the heart.
Anyone could be exposed to asbestos. It was used up until the 1980’s in many applications such as building and construction materials, some consumer goods like crockpots and hair dryers, and in many naval applications. There are many different ways that people can be exposed to asbestos, some of those diagnosed with mesothelioma were exposed on the job in construction or demolition careers, while serving in the Navy, or like Heather, in secondary exposure, from asbestos that came home with her father.

You were also raising your infant daughter, Lily, at the time and working. How did you juggle all those responsibilities?
With great difficulty at first. I learned to prioritize my tasks, manage my time and use the resources around me to help lighten the burden. And I never forget to take care of myself. I also learned to be flexible. When you are living between doctor’s appointments, being flexible helps. I also called upon a great support network. I was very fortunate.

What was your self-care routine like while you were helping your wife?
I didn’t have any routines at first. Things were changing so fast; life was very dynamic. In the beginning, I would just take time out for myself whenever I needed a break— a quick movie, or lunch with friends. Once life settled into more of a routine I was able to schedule time weekly to catch up with friends or socialize, just anything to get away and forget about being a caregiver.
I never found it that hard to schedule time off from caregiving to take care of myself and I believe I’m a bit unusual in that respect. Most other caregivers I have met find it very difficult to take time off and get away. Many even feel guilty if they take time for themselves. I don’t believe you can be an effective caregiver if you are not taking care of yourself. I always tried to eat well, get enough sleep and not neglect my social life too much.

Who were the people you called on for help? Was it difficult for you to ask for or accept help at first?
I had a huge support network and called upon many people to help, and yes, it was difficult at first to ask for help. I remember a guy walking up to me at a benefit we had in my wife’s home town. He didn’t know my wife or her family. He was just passing through town, saw a flyer for the benefit and stopped by. Years ago his wife was diagnosed with cancer and he knew what it was like to be a caregiver. He introduced himself and we chatted. I’ll never forget when he told me, “If anyone ever offer you help, take them up on it. It’s one less thing you have to worry about, and it reminds you there are people who love and care about you.”
It might have been a pride issue at first, but hearing the advice from another caregiver changed how I felt about asking for help.

Many caregivers tell us that they are glad to help their loved one, but that it’s still stressful and brings up a lot of negative emotion. What ways did you find to deal with emotions like guilt, worry, or frustration?
I found myself dealing with anger after Heather’s diagnosis. We had spent the last five plus years planning the start of our family, trying to get ready to be parents. And while I was as ready as I could be for fatherhood, I was not ready for Heather’s mesothelioma diagnosis 3 months after our daughter was born. I was stuck on anger. Not at Heather, at life in general. It took me a while to get over it. I had a moment where I realized the worst case scenario was something I could get through. I realized I had family and friends who could help me no matter what happened. And what I didn’t know, I’d figure out in time. I realized what I did and what I didn’t have control over. I was never angry at Heather, just at cancer.

Now you help support other families that are experiencing a mesothelioma diagnosis—people call you to ask questions or help sort out their confusion. What do you tell people who are just starting down that long road of caregiving?
First I listen. I don’t believe I have all the answers, but I do have two ears and I try to relate. I also realize what worked or helped me may not work for others. I remind caregivers to take care of themselves, to eat as healthy as possible and get plenty of rest. I remind them it’s okay to ask for help from others. I tell them it okay to want to take time off for themselves. That it’s important to still have a social life and to maintain a strong support network.

You’ve become a tremendous advocate for mesothelioma awareness. What kinds of resources would you like to see caregivers have access to in the future, regardless of diagnosis?
There are many resources available for caregivers, online support groups, social media, and websites dedicated to caregiving. Many healthcare facilities now have caregiving support groups. Some diseases have huge social movements, raising money and awareness and can be a great resource. The Internet has become a very powerful resource for caregivers, but what I would like to see is more employers who willing to work with caregivers and allow creative work schedules.
After my wife was diagnosed my employer was fantastic, allowing me to take time off whenever I needed, my wife’s had the opposite experience.  Many caregivers struggle with work schedules and the demand of caregiving. Having an employer who allows creative scheduling can make a huge difference!
Please feel free to read more about Cameron story on Heather’s blog series at Beating the Odds: My Decade of Survivorship

Thanks for sharing your story with us, Cameron! Want to share your story? Contact us!