There are 13.7 million cancer survivors in the US. Wow. I hope that number gives hope to those who were recently diagnosed with cancer. We all know that a cancer diagnosis is a scary thing and I respect those that fight a battle with cancer- whether they win or not. But today, let’s celebrate the winners who beat their life limiting illness by seeing what a cancer survivor can teach us.
Interview With A Cancer Survivor- Heather Von St. James
Heather Von St. James was diagnosed with malignant pleural mesothelioma at the age of 36 in 2005, 3 short months after the birth of her daughter, Lily. Today, she is a 9 year cancer survivor who spends her time blogging for the Mesothelioma Cancer Alliance and spreading hope to those who are newly diagnosed.
How did you learn that you had mesothelioma cancer? Did you display any symptoms or signs?
After my daughter was born via c -section, I was told I was a bit anemic upon checking out of the hospital. Looking back, that was one of the first warning signs, that and the fact I had only gained 5 pounds throughout the whole pregnancy. They say hindsight is 20/20. About a month after Lily was born, I was so exhausted.. bone weary. I just figured it was from being a new mom, breastfeeding and having my nights and days all messed up. Then, I started back to work part time a month after she was born and that is when the symptoms started to show up in earnest. I was losing weight at an alarming pace, 5-7 pounds a week, and it felt like a truck had parked on my chest. I just couldn’t breathe. Fevers, fatigue, a dry shallow cough, it all began to add up.
How did you react to the news after learning that you were only expected to live 15 months post-diagnosis? What did you do?
I was in shock, plain and simple. The last thing I expected was a mesothelioma diagnosis 3 ½ months after having my daughter. I just looked at the doctor, then to my husband. He has always been the calm headed one, and thinks clearly in times of crisis. He told the doctor to get us to Boston after he had laid out our options. All I could think of was Lily and how on earth we were going to pay for all of this. My doctor said he would call my insurance company, and true to his word, he was able to work with them. I was so relieved.
After the shock wore off, a quiet determination set in. Dying was not an option and I would do everything I could to raise my daughter. I found out I was the perfect candidate for surgery to remove my lung, and that is the course we decided to take. On Feb 2nd, 2006, I had my surgery in Boston.
What was your cancer treatment and recovery experience like?
It was the hardest thing I have ever been through. The surgery is very invasive, and I was basically cut in half. My lung, diaphragm, and lining of my heart were all removed, along with one of my ribs. My pericardium and diaphragm were replaced with surgical gore tex. I was in the hospital for 18 days. I then spent two more weeks in Boston to make sure I was well enough to fly. Exactly one months after surgery I flew to my parents home to recover. My baby girl had been staying with them while we were in Boston. My husband had to go back to work, so my parents stepped in to care for me and our daughter. It took about 3 months after surgery to feel semi-normal.
Then I started chemo which was a roller coaster. I had 4 sessions of chemo which lasted through the summer, I finished a couple of weeks before Lily’s first birthday. We had a HUGE celebration. I started radiation about a month later. 30 sessions of IMRT radiation left me sick, exhausted and a shadow of my former self. I had lost close to 100 pounds by this point. I had so much help in getting through those months… There is no way I could have done it on my own.
I really learned who was there for us, and who was not. Recovery is a lifelong experience. Just because my treatments are done doesn’t mean I’m 100%. I live with chronic pain, decreased lung function, and ptsd. I have a wonderful therapist who helps me deal with the after effects of cancer, and survivorship issues. It is something I will deal with the rest of my life.
How do you empower women now that you are cancer free? Do you have any advice for those raising kids/families?
You are stronger than you ever thought you were, and if you get out of your way, you will be amazed at what you can do. I refused to take 15 months as my life expectancy. I sought out the best doctors and support I could find. Then, I got involved in the community so I could help others in their time of need. It isn’t about me, or my journey, it is how I can help others who find themselves in a seemingly impossible situation, find a way to deal with it.
If this whole cancer thing taught me one thing? It’s to not sweat the small stuff. Being a mom is hard, and we tend to be so hard on ourselves if we aren’t perfect, or can’t do it all. It’s ok to say no, it’s ok to ask for help, and it’s ok to let the dishes sit overnight to spend time with your kids. The dishes aren’t going anywhere, but moments with your loved ones won’t last. Cherish the here and the now, and don’t freak out about what you have no control over- knowing that is key.
What positives have you found during this experience?
Hands down, the people. If I had not gotten sick, I would not know this amazing community that is the mesothelioma community. They are some of the most supportive, passionate and loving people I have ever had the opportunity to meet. I’ve learned that friendships happen on a much more deep level, because going what I’ve gone through, I just don’t have time or energy for people who aren’t invested in it like I am. It’s given me a much sweeter outlook on life, and all it has to offer. I was given a second chance and I’m not going to waste it.
What do you want people to know about mesothelioma?
Most people don’t even know what it is, or think of it as an old man’s disease. The fastest growing demographic of patients is young women. The disease is more than a commercial on TV.. it’s about real people getting sick because of the greed of big companies. There is more help available now than ever. Highly trained doctors, and specialists who know so much about this disease. Early detection is key. I was one of the lucky ones. We found mine early, and had excellent medical care. Seeing a specialist is what I credit for saving my life. There is help and there is hope.
Thanks so much to Heather Von St. James for taking the time to share her cancer survivor story with us. My favorite piece of what she had to say was this-
I was given a second chance and I’m not going to waste it.
Now, if we can all remember that without needing a second chance! Live in the moment- enjoy the present! And always keep hope and faith!