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.
Resources for Mesothelioma Patients and their Families
- Request a Free Mesothelioma Treatment Guide
- Connect with Top Mesothelioma Doctors
- Locate the Nearest Comprehensive Cancer Center
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”