Below is a guest blog post from a caregiver dealing with mesothelioma – Cameron Von St. James. While the disease it very different from multiple system atrophy, caregivers of people with different diseases can learn from each other.
The Day I Became Her Caregiver
November 21, 2005. It’s a day that is forever etched into my mind. It was that day in the doctor’s office that my wife Heather and I received life-altering news: Heather was diagnosed with malignant pleural mesothelioma. It was in that moment that I went from being Heather’s faithful husband to taking on the additional role of being her caregiver. I wasn’t prepared for my new responsibilities to say the least.
Just three month’s prior to Heather’s mesothelioma diagnosis, we celebrated the birth of our only child, our daughter Lily. We were eagerly looking forward to celebrations such as Lily’s first Christmas and Thanksgiving. But the diagnosis turned our lives upside down.
The consequences of being thrown abruptly into the role of caregiver for a love one with a life-threatening illness began before we left the doctor’s office when Heather was diagnosed. The doctor told us about what mesothelioma is and that we needed a specialist to treat the condition. He gave us a few options. First, a local university hospital; Second, a regional hospital that lacked a developed mesothelioma program but had a great reputation; third, an expert in mesothelioma locatec in Boston. I looked to my wife, expecting her to choose one of the options laid before us. But her face was stricken with grief and horror. I knew she needed help desperately. In that moment I said to the doctor, “Get us to Boston!”
After Heather’s diagnosis, our daily routines devolved into complete chaos. Heather could no longer work her full time job. I was only able to work part time. My days were filled with making travel arrangements and traveling to and from Boston with Heather for her doctor’s appointments. I was also taking care of our daughter Lily. The never-ending list of responsibilities that was given to me began to overwhelm me. I recall being inundated with the fear that my wife would die of cancer and I would be a widow with a young daughter to take care of.
I also stressed over our financial struggles, wondering if all our money would be spent fighting a disease that would take my wife away from me. How could I care for my infant daughter if I was alone, broke and homeless? I found myself balling on the kitchen floor. The fear didn’t subside but my resolve returned when I would focus on what needed to be done. I also made sure that Heather would never see me at my weakest and darkest moments. She needed me. And I needed to be her strength.
Throughout our struggle, we had friends, family and complete strangers to carry us through. Comforting words came when we needed them the most. And so many people offered financial assistance that we were overwhelmed by gratitude. If you are ever in the position where you must fight a difficult diagnosis or be the caregiver of a loved one with a serious illness, don’t turn away the help that is offered to you. Every little bit helps. Let the generosity of others lift you out of those dark moments. Know that you are cared for and can call upon others to help carry the load.
Being a caregiver of a loved one with a serious and life-threatening condition will drain you. There is no getting around it. You will feel like your life has devolved into chaos and constant stress. Uncertainty can easily take over your mind and spirit. It will be the hardest thing you will ever go though. You can’t escape the reality of your situation, but you can’t give up. Know that the good days will come with the bad and don’t let fear rule your life. Don’t lose hope. Lean onto others for help. Use the people and resources that you have to keep your sanity.
After many years and treatments that included surgery, radiation and chemotherapy, our lives began to return to a sense of normalcy. Heather was able to defy the enormous odds against her and ignored the poor prognosis for mesothelioma. Now, over seven years later, she remains healthy and cancer free.
If you ever find yourself in the role of caregiver, you will learn many life lessons. You will learn that pride is something that you must let go of and accept the help of others. Because asking for and receiving help is not a sign of weakness. It is a sign of strength. You will learn how to manage stress that you thought would be unmanageable. My caregiver days also taught me to never stop fighting for the one you love and to know that you are capable of achieving more than you ever dreamed possible.
About the Author: Cameron Von St. James:
Cameron is husband to Heather Von St. James, survivor advocate for the Mesothelioma Cancer Alliance, and father to Lily Rose. He, along with Heather and young Lily, had their world’s turned upside down when Heather was diagnosed with malignant pleural mesothelioma, just 3 1/2 months after the birth of his only child. When faced with the very real possibility of raising Lily on his own, he fought alongside Heather in her battle with mesothelioma. It was his determination and refusal to compromise on doctors or treatments that led them to Boston to receive radical surgery from esteemed mesothelioma surgeon, David Sugarbaker. Heather continues to thrive 7 years later.
Through out the next few years, while being a caregiver to Heather and dad to Lily, Cameron returned to school full time to finish his degree. He worked full time, went to school full time and graduated with high honors at the top of his class in June of 2010 with a Bachelors of Science in Information Technology. He was soon offered a position at US Bank as Network Analyst and continues to pursue his career.
Like Heather, Cameron is passionate about bringing awareness to mesothelioma and the dangers of asbestos exposure. It is his hope that sharing his story will help others those battling cancer and their caregivers who provide them care and guidance in their journey.