Being a parent, my biggest fear is my child getting sick. I think that is a constant fear, regardless of how old your child is. So when I was diagnosed with mesothelioma, my parents had to face that fear. I was their child, their baby, and now I was fighting for my life. Then, with me being a new mom, they had to take over my role as a parent while I was in Boston for my surgery. They were much more than Grandma and Grandpa—they were, in every sense of the word, parents to her in our absence.
Heather Von St. James
Courageous Mother, Wife and Survivor of Mesothelioma
Community—a sense of community and renewed hope. That is what the overwhelming feeling was at the Mesothelioma Applied Research Foundation's (MARF) annual symposium on malignant mesothelioma. The symposium took place from Wednesday July 11th to Friday July 13th in Washington DC—no where else can you have, all in one room, world-renowned doctors, other medical staff, lawyers, patients, their loved ones and caregivers, as well as those who have lost members of their family to the disease. Everyone came together for a single cause, to help find a cure for mesothelioma. What a very powerful testament to what the MARF is about.
You hear the joking comments “Normalcy is highly overrated” and it is, until something happens to shake your foundation, and everything you have is turned upside down. For some people, it is a divorce, a break up, the loss of a loved one, but for me, it was my cancer diagnosis. I was diagnosed with malignant pleural mesothelioma—rather melodic sounding, but mostly just a deadly cancer. I fought it with everything I had and, right now, I’m doing well. At my last check up, there was no evidence of the disease. I am a 6 1/2 year survivor.
There are certain words in the English language that you never dream of being a part of your every day life—words such as thoracentesis, computed tomography or, how about this one, extrapleural pneumonectomy—EPP for short. All of these words became a part of my every day vocabulary when I was diagnosed with malignant pleural mesothelioma in 2005. We heard the word cancer first. Then Mesothelioma. And finally the words extrapleural pneumonectomy.
My heart broke again today. Sometimes I don't know if there is anything left to break. It has been broken so many times.
When I was diagnosed, I was thrust into this alternate universe of mesothelioma. For the first year, it was all about me; my surgery, my treatment, my health. But I had met two other patients that were going through the same things, so I was not alone. It was then I became aware of so many more people suffering. Every trip to Boston, I met someone new-- the elderly couple from Utah; the too-young man from New Jersey; the handsome, young father of two vivacious boys from Texas who’s wife also happens to be a Heather. By getting to know this man and his wife, my disease became more about others and my heart grew by leaps and bounds. The love for this family from Texas forever stamped on my heart-- I celebrated every victory with them. But the cancer came back and, sadly within a year, he died. That was the first time my heart broke. I cried for days for this family. I vowed to make a difference. I vowed to be a prayer warrior. I vowed to be strong.
“Cancer Camp” is what my sister affectionately refers to the days we spent at Shannon’s House that cold February in 2006. We had a room on the first floor toward the back. It was a small room with two mostly comfortable twin beds, a huge closet and a private bathroom. I had packed a fleece blanket that my mom had made for me and brought it with to use in the hospital, and I was so glad to have it with me while I was at the house. It was a little piece of home that I had while healing. She had also made my sister one, and so we both had our blankets from mom with us for “Cancer Camp”
If you ask my daughter about my cancer, she will tell you one thing, “I saved my mommy’s life.” She says it in such a nonchalant manner, it is if she is saying “The sky is blue” but she is right, she DID save my life.
The entire 11th floor of Brigham and Women’s Hospital in Boston is dedicated to thoracic patients. They have lung transplant patients, collapsed lung patients, esophageal cancer patients and, of course, extrapleural pneumonectomy or EPP patients like myself. The nurses and residents are highly skilled and know exactly what to do to care for us.
On April 24th, I had my bi-annual check up in Boston with Dr. David Sugarbaker. It’s been 6 1/2 years since my diagnosis. It has been 6 years and 3 months since my subsequent surgery to have the tumor and my lung taken out—wow! I get giddy when I think about it. The few weeks before my appointments I usually suffer from what I call “Scanxiety,” or this anxiousness that comes before the scans to see if “it” came back.
I cannot remember the moment I became aware of other mesothelioma warriors around the globe, but, sometime in the last few years, my friendship base grew from a couple of people I knew from Boston to many people from all over the world—the United Kingdom, Australia, Brazil; the list goes on and on. A few in particular stuck out because of their fierce passion against this disease and what it has done to their lives and to others’ lives as well. “Turn anger into action,” they say. Sadly, many have passed, succumbed to this dreadful disease and mourned by people worldwide. Many are doing well, fighting hard, and making it known that they won’t give in. I was lucky enough to meet one of these brave women this last weekend when my husband and I attended the Asbestos Disease Awareness Organization’s annual conference in Los Angeles, CA.
This past weekend I traveled to Los Angeles, California to attend the Asbestos Disease Awareness Organization's international conference, “Asbestos: An International Public Health Crisis”. From March 30 to April 1, I was surrounded by renowned experts and other asbestos victims and survivors like myself. It is an amazing event that brings us together to share our experiences and learn about how we can help spread awareness and education about the disease and learn about new treatment options.
My surgery was scheduled for Thursday, February 2nd, 2006, at 7:30 a.m. Cameron and I arrived in Boston on the 31st of January to get settled in and get all the pre-op testing done. All of that was scheduled on Feb 1st. It was a whirlwind day.
As I lay in bed, wide awake, my mind reeling from the nights festivities, tears of gratitude rolled down my cheeks. I thought back over the last sixyears and how far we have come. From being alone, just Cams and me in the hospital, to now, a night surrounded by friends and family, all there tocelebrate life.
Lungleavin Day was born out of necessity. It came about as a way to see light in a very dark time in our lives, and as way to conquer the fear that so often accompanies a cancer diagnosis. Below is the story of its origins and what it means to us today.
Our baby's first Christmas, 2005- It was supposed to be memorable, and it was, but for all the wrong reasons. We did everything we usually do; Christmas Eve with my husbands family, but despite the festive air of the season, no one could ignore the dark cloud hanging over us. To this day, when I decorate my Christmas tree and I put the "Baby's First Christmas" ornament on the tree, I do so with a bittersweet feeling.
My entire life I have been accused of being the eternal optimist. It is a trait that has always served me well, but never in my wildest dreams did I ever think that being an optimist, would play a key part in my very survival. When I was diagnosed with on November 21st, 2005, just 3 months after my baby was born, my initial reaction, of course was shock and fear. But once my options were explained to me, my optimistic outlook kicked in full gear. I was given 3 options. I could do nothing, and live maybe 15 months. Undergo chemotherapy and radiation and hope for up to 5 years. Or, I could have a risky surgery called an extrapleural pneumonectomy and increase my chance of survival to 10 years or more. My husband and I immediately opted for the surgery. Dying was not an option.
It was December 5, 2005, we were on a plane to Boston. We had an appointment set for the following day to see Dr. David Sugarbaker and the International Mesothelioma program team at Brigham and Women’s Hospital. We were scheduled to be at the hospital early in the morning for an orientation with the team, followed by a slew of tests in the afternoon.
It was upon attending the Mesothelioma Applied Research Foundation’s annual Symposium on Malignant Mesothelioma back in June, that I first learned of Mesothelioma Awareness Day and the foundation’s plans to descend on New York City in September. As a survivor of the disease myself, the idea intrigued me but I didn’t really think it was going to be realistic for me to go.
I spent the evening making phone calls to family, and friends. My parents live over 600 miles away, and upon hearing the news, made plans to be out here the next day. It’s at least a 10-hour drive, but they needed to be here. I needed them to be here. No matter how old you are, it seems like you always want your mom and dad when you are sick. It was a comfort to know they would be here.
Knowing that something was seriously wrong with me, I called our family physician to help me find an answer to the question that was haunting me; could I really have mesothelioma cancer?