I love social media! Through Facebook, Twitter, and Instagram, I've been able to communicate with literally hundreds of people throughout the world. I especially love it during the holidays, because it gives me a glimpse into the traditions and lives of my new friends. Traditions are the rituals we all do year after year and carry on generation after generation without question. We just do them "because it's always been this way".
Heather Von St. James
Courageous Mother, Wife and Survivor of Mesothelioma
Posts from 2012
Scanxiety: Noun [skan-zi-etee]: Uneasiness waiting for ones scans after cancer treatment. ie: I get Scanxiety the week or so before I go to Boston for my check ups.
I've said it before, my mesothelioma cancer was all at once the worst thing and best thing that has ever happened to me. Getting the diagnoses when my baby was only 3 1/2 months old was certainly not in our plans. I planned on being a working mom, but this cancer changed all that. I get to be a stay at home mom, I get volunteer with my daughter’s school and help out when I can. I actually enjoy it far more than I thought I would. When I worked in the salon, I used to joke that they would have to pry the shears out of my cold, dead hand before I ever quit, but I guess someone had other plans for me. Some days I do miss going to work, but all I have to do is sit and read some of the comments on my blog or Facebook page to know that I am doing the right thing-- I'm making a real difference in people's lives.
Lily started 2nd grade this year-- 2nd grade! She’s a bright and vibrant 7 year old with a stubborn streak a mile long, and sweetness that will melt even the most bitter of hearts. I love going to ‘meet the teacher’ night and seeing how excited she gets when she walks through those doors at school. So confident and filled with hope and wonder-- she loves her school.
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.
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.