This is the true story of Heather Von St. James – courageous mother, wife and survivor of mesothelioma cancer. She hopes by sharing her experience she will connect and support others battling a severe illness. – Anisa
A short three and a half months after giving birth to my beautiful baby girl, I received the devastating diagnosis of malignant pleural mesothelioma – a rare disease that is almost always caused by asbestos exposure – affects the lung’s protective lining in the chest cavity.
Symptoms include, but are not limited to shortness of breath, coughing, pain, fever, night sweats, and unexplained weight loss. My symptoms where shortness of breath, fatigue and drastic weight loss. This disease does not target any specific type of person, anyone can get it, with the risks being higher if you have worked with asbestos. I was exposed as a child from my dad’s work.
Getting lost in my daughter’s intoxicating newborn scent was replaced with preparing for the battle of my life against a deadly cancer. I refused to allow my precious girl to grow up without me.
Friends and family agree that I am an eternal optimist. Upon my diagnosis on November 21, 2005, I quickly decided to don the rose colored glasses I am so often accused of wearing. Optimism seemed the best weapon for my fight. Facing the diagnosis with the glass-half-full attitude was the only foreseeable option.
I couldn’t let the mesothelioma win. I wanted to be the one to raise my daughter. I found myself also motivated by the desire to help give people hope. Hope is something those newly diagnosed have trouble finding and holding onto. Upon learning of this life-altering diagnosis, my family and I, embarked upon a search to find the best mesothelioma treatment care available. Our search led us to Dr. David Sugarbaker, a renowned mesothelioma surgeon at the Boston based Brigham and Women’s hospital. Dr. Sugarbaker filled me with the belief I could beat this disease. His encouragement inspired me. He recommended a relatively new surgical procedure called extrapleural pneumonectomy, a groundbreaking treatment option offered through the International Mesothelioma Program. Although there were some risks associated with the procedure, it also carried promise for the best possible outcome. With full support from my husband and family, I agreed to have the surgery.
Wallowing in self-pity gives cancer the upper hand. I approached my impending lung removal surgery with certainty and hope. February 2, 2006 was the surgery date. Mesothelioma treatment is grueling, so we found ways to make light of the situation. In our home, my tumor was nicknamed Punxsutawney Phil. Groundhogs Day was dubbed Lungleavin Day. While not making light of the situation, we also did not give the disease power. Our spirits were never hampered by mesothelioma.
We now celebrate Lungleavin Day annually. Each year since 2006, we have a party the first weekend in February. The party is a celebration of hope. It pays homage to my plight and my dedication to inspiring and educating others.
My advice to others faced with illness. DO NOT SETTLE. Find the BEST doctor and medical care you can. Mesothelioma is not a disease just any old doctor can handle. It is so vital to search out your options. My family was an incredible source of help and meeting other patients going through the same thing was wonderful. I am still in touch with many people who have all gone through the same thing. Although there is no official “support” group for this disease, social networking sites like Facebook have given mesothelioma sufferers a huge support network. Blogs were not on my radar 6 years ago (or most people’s) for that matter…so email was the way I kept in touch with everyone back home while I was in Boston going through surgery and recovery.
Ending the journey victoriously changed my life. The security of knowing I can withstand something so scary and larger than life is empowering. I am now able to share my end result with others. Sharing knowledge and giving hope drives me. Educating others about mesothelioma is now my passion.
Countless dynamic people have touched my heart throughout this journey. I look forward to meeting many more to spread hope and raise mesothelioma awareness, specifically on the Mesothelioma Cancer Alliance Blog.