Heather Von St. James was always accused of wearing rose-colored glasses. But it was those rose-colored glasses along with her family, friends, and medical team that would save her life.
After three months of giving birth to her daughter Lily, Heather was diagnosed with Mesothelioma. What widely is known as “an old man’s disease” was attacking Heather’s 36-year-old body. Mesothelioma is a malignant tumor that is caused by inhaled asbestos fibers and forms in the lining of the lungs, abdomen, or heart (known as the mesothelium). It’s an aggressive form of cancer that gives patients an average of 10 months to live. Or, as Heather’s web campaign soberly points out, just 300 days.
But Heather wouldn’t go down as one of its victims.
Heather and her husband Cameron sat down with us for an extraordinary and candid interview to discuss her experience with this deadly disease, the power of positive thinking, and raising their beautiful nine-year-old daughter, Lily.
Q: Your story of survival is remarkable, and no doubt an inspiration to anybody who has ever heard those feared words “you have cancer.” What do you say to someone who has just been diagnosed?
Heather: Slow down. So much is thrown at you right away. Weigh your options. The doctors stress urgency – and that’s a good thing, you don’t want to wait six months without taking action, but take the time and seek out more than one opinion. And lastly, which I can’t stress enough, is find a specialist in your disease. I was referred to a Meso specialist (Dr. David Sugarbaker) in Boston, and I credit my survival to having a specialist. What all Mesothelioma long-term survivors have in common is they found specialists equipped to deal with the disease.
Q: Mesothelioma is cancer that not many people know too much about. Or they link it immediately with “old men” who worked with Asbestos. What would you like people to know about Mesothelioma?
Heather: That it’s not an older man’s disease. It’s a common thought that Mesothelioma only affects men in their 70s, 80s, and 90s who have worked with Asbestos. When in actuality, the fastest demographic of mesothelioma patients are young adults. It is caused by issue to Asbestos – and Asbestos exposure is easier than you think. It’s not banned yet and even found in some children’s toys.
Q: You were diagnosed with Mesothelioma three months after giving birth to your daughter Lily. How did you know there was something wrong?
Heather: I was tired, bone tired. I also had shortness of breath that wouldn’t go away and just got worse. Also, I was losing a lot of weight fast. About five to nine pounds a week. Mesothelioma causes anemia, so I was exhausted all of the time.
Finally, I went to my doctor and said: “dude, there’s something wrong with me.” They could have easily written my symptoms off as similar postpartum symptoms. I’m thankful to my doctor for having a more profound intuition that I wasn’t getting better.
Cameron: We started ruling out the simple stuff. The doctor thought maybe Heather had a heart virus – another postpartum condition. He ordered a chest X-ray because they were still looking for postpartum related problems. Not cancer.
Heather: That’s when they saw the fluid and were like, OK, that shouldn’t be there. That fluid is what led to my diagnosis of pleural mesothelioma.
Q: Cameron, as you and Heather faced her new diagnosis with shock and disbelief – as well as the determination to have your daughter grow up with both of her parents, you kicked into full-time caregiver mode. What consultation do you have for the readers who unexpectedly find themselves as caregivers?
Cameron: Never neglect yourself. Never neglect food, sleep, social life, health. If you have nothing left, then you have nothing left to give. It’s easy to get wrapped up in the caregiving aspect, but you have to actively remind yourself to take time for you, and that it’s OK. Also, it’s important to organize your time. Evaluate what you need to get done – and what you can put off. If anyone says, “I can help” take them up on it! When you’re organized, it gives you the opportunity to ask for specific help (i.e., run to the grocery store). This also gives people the opportunity to feel involved while giving you the assistance you actually need.
Q: Do you mind telling us a little bit about your surgery, and the birth of Lung Leavin’ Day? We’re so excited to celebrate our first LLD with you both!
Heather: Lung Leavin’ Day is a celebration we have on the anniversary of my extrapleural pneumonectomy, meaning the day they removed one of my lungs. The day of surgery was an incredibly stressful, fearful, and apprehensive day. Because we have a dark sense of humor, we joked before I went in for surgery that what if it was actually groundhog’s day and I’d have six more days of recovery? I said, “or what if it’s Lung Leavin’ Day?”
That name stuck, and we deemed it as a day where we’d write all our fears on plain, white plates and then smash them into a bonfire. For us, it was a way to celebrate facing and then letting go of our fears. The funny thing is the next year, on my first anniversary of the surgery, I forgot all about it! Cameron came home that night with plain white plates and sharpie markers and said: “It’s Lung Leavin’ Day.” Now mind you my anniversary is on February 2nd –
Cameron: – and we live in Minnesota!
Heather: But we trecked out to the backyard, made a bonfire, and celebrated our first Lung Leavin’ Day together. Because for me, that’s the day life started over.
Q: But it’s also grown into a huge celebration/ fundraiser! It’s even gotten international attention!
Heather: Yes! Every year we have more and more people attend what started off as a private celebration. Last year we had about 85 friends, and family members turn out at our house for Lung Leavin’ Day. Last year we even had people from the UK and Australia celebrate with us.
Throughout the years, we’ve met more survivors, and they come and celebrate too. We eat sloppy joes, cupcakes, and drink hot chocolate and booze ( the official food of Lung Leavin’ Day) and toss our fears into the fire!
Q: What were some of the biggest surprises (or lessons) learned from your experience with Mesothelioma?
Cameron: We were blessed with the support of friends, family – but even complete strangers would come up to us at fundraisers. Just people who saw the flyer and would say to us “I’ve been there” and would show up and donate.
Heather: It’s not the people you expect it to be. The people you never expect are the ones who are there for you in the depth of your darkness. We don’t waste energy with people who aren’t uplifting. We don’t want that energy – especially not when you’re battling a disease like Mesothelioma that’s out to kill you – and fast. We discovered who was important to us, and who we were important too.
Q: Did the cancer diagnosis (and recovery) affect the way you both shop for food, products, supplies, etc. Would you say you pay attention to non-toxic & organic stuff more, less or the same as before?
Heather: I am far more cautious about the products I bring into the home, especially stuff I use on my body, or that Lily uses. Cleaning products are all green; I made that switch when I got pregnant. I actually can’t wait to try Grab Green stuff!! I have my wish list started for when I start running low on the things I have.
As far as food, I avoid anything that would have artificial hormones and buy quite a bit of organic. I frequent the farmers market in the summer and support the local farms that way. I am much more aware of toxins in everyday items, so yes, I do pay far more attention.
Q: We love the pictures of the two of you baking with Lily on your website! It got us thinking, though – how has your experience with Meso changed the way you raised her?
Cameron: That’s a hard question because we never raised her without it. We were spectators the first few years of her life because she had to go west to the Black Hills in South Dakota (with her grandparents) while we battled Mesothelioma head-on.
Heather: Values after cancer change. The irreplaceable becomes more valuable than the things you can insure.
In our family, we try and make the moments- wherever we are- enjoyable. It’s the small moments. A walk back from school. We like to camp. And paddleboard. Lily and Cam like to ski- and I’m going to try it this winter. We still have our moments where we can’t stand each other, though. We’re still human and get caught up in the everyday BS. You just have to stop and say wait; this isn’t important. If you have cancer as a watermark – everything looks small compared to that.
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