Heather

Cameron Von St. James is husband and caregiver to mesothelioma survivor Heather James. Here he explains why he is so passionate about raising awareness of the cancer and asbestos.

November 21, 2005 changed our lives forever. Three-and-a-half months earlier, my wife Heather, who was 36 at the time, and I welcomed our baby girl, Lily. It was such an exciting time and we were getting into the swing of being parents. But Heather was more tired than normal, her skin sallow, and she found herself out of breath just from going up a flight of stairs. Though mums typically start shedding baby weight, Heather was losing almost 10lbs every week.

After lots of testing, a mass was found on her lung. After weeks of waiting and more testing, we received the diagnosis. Heather had malignant pleural mesothelioma. Mesothelioma is quite rare. Its only known cause is exposure to asbestos, a naturally occurring mineral frequently used for its heat resistant properties. Heather was exposed to asbestos second-hand. Her father worked in construction, sanding drywall, and she would wear his dusty work coat to play in. They didn't realise all the dust on his coat contained asbestos fibres until she was diagnosed. We were absolutely shocked. As the doctor explained the cancer and discussed treatment options, Heather was too stunned to do much other than listen. I felt fear and uncertainty wash over me. The doctor mentioned an experimental procedure in Boston that could give her 10 years to live, a much better prognosis than the 15 months she had if we didn't seek treatment. Without hesitation, I said "get us to Boston." In that moment, I became a caregiver. Emotions aside, we had to think reasonably and still be able to make the tough decisions.

Though it was hard for us to leave Lily, she really drove all of our decisions for Heather's treatment. We knew she couldn't grow up without a mother. So with Heather's parents taking care of our baby, we travelled to Boston to save Heather's life. On February 2, she had her left lung removed. Though Heather expected a quick turnaround, her recovery took time. She faced complications with her kidneys, and had to stay in Boston for a month. Due to the cost of treatment, and our normal life, I had to leave Heather in the care of her sister after 18 days. I felt helpless returning to Minnesota so soon after her surgery, but with just my income to keep us afloat, we knew I had to return to work.

"Our life journey didn't turn out as expected, but I don't look back with any regret"

When Heather was finally well enough to leave Boston, she flew to South Dakota to stay with her parents. She couldn't take care of Lily on her own and needed to regain her strength before the next step of treatment. It was hard to be away from my family, but we went into this diagnosis with a "whatever it takes attitude". During this time, I only got to see them once. I drove 11 hours through the night and a late-season snowstorm after work to be with them. Our time together flew by, and Sunday morning I headed back to Minnesota so I could be at work Monday morning.

Three months later, Heather and Lily returned to Minnesota. Though it was a blessing to have them home, my days were still long and hard. I worked full time, while caring for Heather and Lily. We were so lucky to have a great network of friends and family who stepped up to help. I felt a bit overwhelmed with everything on my plate at times, and I'm not sure what I would have done without them.

Heather still faced months of treatment – four chemotherapy sessions, followed by 30 days of radiation. But over that first year after her surgery, her health and strength slowly returned. On the anniversary of her surgery, we celebrated our first Lung Leavin' Day (a nickname Heather's sister gave to the surgery that gave us some humour to pull through the fear). The day is all about overcoming fears, which we write down on a plate and then smash them into a fire. The first year it was just Heather and I huddled around the fire out in the snow. But soon friends and family caught on, and it's exploded into a wonderful event. With the rest of the mesothelioma community, we use the day as an opportunity to raise awareness and money for mesothelioma research and asbestos awareness.

Our life journey didn't turn out as expected, but I don't look back with any regret. Heather continues to live a healthy, active lifestyle, just meeting her, you'd never know everything she's been through! It's been almost 11 years now since we first learned her diagnosis. We didn't even know if she'd make it to Lily's first birthday. Now being able to continue to advocate for this disease and raise awareness means so much, especially given how uncertain our future seemed. We dream of a day where asbestos is banned and no longer an active threat. We pray for the day mesothelioma ceases to exist. But until then, we'll work to help prevent other families from facing this needless suffering.

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