(This is a post from Heather Von St. James, who was diagnosed with pleural mesothelioma in 2005 at age 36 and is excited to tell her story today, thanks to her own advocacy for her health and the quick action of her doctors. This post has been edited only for length and clarity.)
“Something is off in your blood work. I want to do more tests and a chest X-ray to find out what is wrong.”
This is what my family practitioner, Dr. John Doyle, told me one October morning back in 2005 when I went to see him for symptoms of a chest cold that just would not go away.
It was 3 ½ months after my daughter, Lily, was born, that I started having puzzling symptoms. I had extreme fatigue, rapid weight loss, night sweats that would leave my pajamas and sheets wringing wet when I woke up, and a persistent low grade fever that struck around the same time every day.
Dr. Doyle listened to me rattle off my symptoms, looked at my chart and ordered a blood test to check my hemoglobin. He assumed correctly that I was quite anemic. He put me on iron pills, and sent me home, hoping that would take care of the symptoms.
Pushing for the right diagnosis
I wish it had been that simple. I was back in Dr. Doyle’s office a week later, feeling slightly better, but still had many of the same symptoms. I also started feeling like a truck had parked on my chest. I could not catch my breath, or take a deep breath no matter how hard I tried.
He was worried. Dr. Doyle knew many of my symptoms could be written off as postpartum, but he listened to me and really took into consideration all my body was going through. He ordered more blood tests, came back about 30 minutes later and told me some of my protein levels were higher than they should be. He sent me for some chest X-rays to see what was going on.
It was this chest X-ray that offered a reason for my shortness of breath. There was fluid sitting around my left lung. He said there was something else there, but needed more imaging to determine what it was. He wasted no time in getting me to the hospital to see a pulmonologist, Dr. James Flink, who found the tumor on my left lung and ordered the biopsy.
Going from diagnosis to treatment
On Nov. 21, 2005, Dr. Flink delivered the news. I had malignant pleural mesothelioma, a cancer of the lining of the lungs caused by asbestos exposure. Through tears in his eyes, he explained if I did nothing, I would not live beyond 15 months. If I did chemotherapy and radiation, I may live 5 years, but there was this groundbreaking and very risky surgery that I could have done that would give me my best chance at longer-term survival – perhaps 10 years if I was lucky.
Dr. Flink had never treated mesothelioma, but he found a surgeon in Boston, named Dr. David Sugarbaker, who could perform the surgery. It would mean traveling to Boston from our home in Minnesota, and spending precious time away from our baby, but it offered us the best chance at surviving this disease. Without missing a beat, my husband said, “Get us to Boston.”
It was the combination of these two hometown doctors that saved my life. My family doctor listened to me when I explained what my body was going through. His referral to the pulmonologist is what set in motion the next steps that I attribute to my surviving mesothelioma for 11 years and counting. Their determination to find answers and willingness to go out on a limb for me is something that I will always remember.
As promised, Dr. Flink got us an appointment with Dr. David Sugarbaker in Boston just 12 days after that fateful day in his office. We arrived in Boston at the International Mesothelioma Program at Brigham and Women’s Hospital in early December.
Taking quick action
We met Dr. Sugarbaker at an orientation they have for new patients. As I sat in the room with those other patients, the reality and severity of the situation overwhelmed me. I had left my four-month-old baby in the capable care of my parents to come see if this doctor could offer us the hope we so desperately needed. That day was the start of a very special relationship. I found out I was a candidate for the surgery and scheduled the procedure for Feb. 2, 2006.
This surgery, called an extrapleural pneumonectomy, entails the removal of the affected lung, the lining of that lung, half of the diaphragm, the lining of the heart and a rib, plus any affected lymph nodes. During the surgery, a heated chemo wash is pumped into the chest cavity and washed around for an hour. They jokingly call this the “shake and bake.” The chemo solution is pumped out. The diaphragm and pericardium are then replaced with surgical Gore-Tex and the incision is closed. The procedure was just over eight hours and went as expected.
Forging a bond with Dr. Sugarbaker
As years went on, the time between appointments went from three months, to four months, to every six months. I was finally comfortable in a routine when I got the news Dr. Sugarbaker was taking a sabbatical. When he returned, Dr. Sugarbaker moved his practice to the Baylor College of Medicine. It was a bit daunting to start all over. I had been going to Boston for 7 years. I knew the whole staff, had friends in the city, finally found the good hotels and restaurants. I’m happy to say that I’m still with Dr. Sugarbaker and return to Houston every six months for checkups.
In the mesothelioma world, 11 years is a lifetime. Most people don’t make it beyond five years, so the fact that I’m still here, and doing so well, makes Dr. Sugarbaker and I incredibly happy. I know the fast actions of my doctors in Minnesota, coupled with the aggressive treatments I had, saved my life. I’m proud to be a part of his story, and proud of the relationship we’ve built over the years.