Beating the Odds: A Mesothelioma Caregiver’s Story
After seven years of marriage, Heather and Cameron Von St. James decided they wanted to grow their family. The two decided to have a baby, and in August 2005 Heather gave birth to their beautiful baby girl, Lily Rose. The two were absolutely ecstatic. They were both ready to take on the challenges and joys of parenthood.
While Heather was thrilled about being a first-time mother, she physically felt awful. She began losing five to seven pounds a week. By mid-October, Heather began feeling like “a truck parked on her chest.” She couldn’t breathe. The couple realized that the doctors had crossed lots of little things off the list, and they began to worry about what could be wrong.
Then, Heather received the diagnosis: malignant pleural mesothelioma. Cameron looked over at his wife and saw sheer terror on her face. They both realized that mesothelioma, the rare cancer that Heather was diagnosed with, put her and her family in a dire situation. Most people diagnosed with mesothelioma don’t live beyond fifteen months. It was at that point they realized they needed to come up with a plan for treatment, so Heather could beat this awful disease.
Heather’s doctor referred her to Dr. Sugarbaker at Brigham and Women’s Hospital in Boston. It was there that she would have her lung removed. Throughout the various parts of treatment, Cameron did his best to keep Heather’s hopes high, while going through such a terrifying experience. “I would keep telling her, ‘Lily needs her mother.’ That’s the way I kept Heather’s hope up,” Cameron explained.
After recovering from her surgery in Boston, Heather went to live with her parents in South Dakota. They had been taking care of Lily, but at this point Cameron had to go back to Minnesota to work so they could pay all of the medical bills coming in, as well as afford day-to-day expenses. This was very difficult for them – particularly for Cameron as a parent. During the three-month span, he was only able to see Lily for three days. Heather recalls that time period and the difficulties of Cameron being so far away. “It’s what we had to do in order to get by,” she said. “It’s just what you do.”
As Cameron worked thousands miles of way, he felt a sense of helplessness. He wanted to be there for this wife, but also realized that cancer doesn’t necessarily put the rest of life on pause. It took a little time, but Cameron realized that just because he was far away, he could still provide really meaningful and much needed care for his wife as she battled mesothelioma.
When it comes to long-distance caregiving, Cam focuses on 3 Cs: communication, control and coping.
Communication is crucial in any relationship, but it becomes much more important in a long-distance relationship that is going through a major health crisis. When thinking back to being away from his wife, Cameron recalls the importance of asking questions. “It’s important to also remember that the person being taken care of may feel like a burden, and won’t be as willing to ask for help. Reassure them that you want to know how they are doing, how they are feeling, and what it is they may need from you — even if it’s just a quiet and open ear.”
While communication has certainly changed over the years, Cameron likes to make sure it remains personal, particularly in this type of situation. It’s easy to get caught up texting, because it’s quick and convenient, but when you are long-distance caregiving you can’t fall back to easy habits. Cam suggests FaceTime, Skype, or even a simple call to hear your loved one’s voice. It will help improve the mood of the one you’re caring for, too.
In a long-distance relationship it is important to schedule times to see one another in person. Again, this is even more important when one’s health is in a poor state. Ideally, you’d like to be able to set up times to visit around one another’s schedule. Spend quality time together, and plan enjoyable activities to make the one you’re caring for feel like a real person, not just a patient. You may have visits that are not planned due to emergency situations. Have a plan for these scenarios.
This is a matter that requires balance. When it came to caring for Heather, Cameron knew that he would need to pick his battles. You cannot control everything, nor should you try to. It’s a matter of figuring out what you can control – and what you should control – and trying to let go of the rest. The two biggest areas you can control are organization and information.
“Keep any and all documents, appointments, etc., regarding their health and medical care, finances, and other personal information in place using a filing and tracking system that works best for both of you.” Cameron explained that this is something he cannot stress enough. It might be tough at first, but it pays off in the long-term to have everything you need organized. “This is one of the biggest favors you can do for yourself,” Cam reiterates.
In order to help your loved one make decisions, and go about their daily life with a disease that’s new to them, keep yourself informed. Read up on the cancer that they have. What treatments are available, and what are the emerging treatments being researched? What are the probable outcomes? What information can you arm yourself with so that you can best help them? That doesn’t mean believe everything you read. Cameron explains that with the amount of information on the Internet it can be hard at times to find sources that are reliable. “Just make sure you do your due diligence and get your information from trustworthy sources.”
Last, but certainly not least, coping is possibly one of the hardest parts of long-distance caregiving, and maybe caregiving in general. The pain you feel for somebody you love who is going through a cancer diagnosis can be very difficult to deal with. When thousands of miles separate you, those feelings maybe intensify. “Guilt, stress, frustration, helplessness — you’ll likely feel it all,” Cameron explains, as he recalls the three months he was in Minnesota, while his wife was in South Dakota.
When you make a tough decision, like Cameron and Heather did, it’s important for the caregiver to deal with their negative feelings in positive ways. First, make time for yourself. Intuitively, you might neglect yourself when you’re putting somebody else’s needs before yours. Remember to continue doing things that make you happy, and participating in activities that can help you alleviate stress. If you’re caring for somebody else, you must first care for yourself!
Sometimes caring for yourself means finding support. It could be support from other individuals who have gone through similar experiences, or through groups and organizations that are there for you when you need a shoulder to lean on or an ear to listen. Whether it’s friends and family or total strangers, it’s important as a caregiver to shares your feelings. Talk through your struggles and your successes. You need to remember you are not alone on this journey. There will always be support for you!
Cancer Hope Network is proud to work with the Mesothelioma Cancer Alliance to provide support for patients and caregivers battling mesothelioma. For more information about mesothelioma and the dangers of asbestos exposure visit mesothelioma.com.