Cancer is the big "C-word" that no one ever wants to hear. It comes with all sorts of emotions, including FEAR. Fear of death. Fear of pain. Fear of loss. What will happen to you? What will happen to your family? One big scary unknown.
The following interview with Mesothelioma survivor, Heather Von St. James, tells us of a world where we never want to go. In sharing her story, Heather hopes that those who do find themselves, or a loved one, in the throes of this battle can gain some strength and understanding that will help them through.
1. Can you describe your mesothelioma journey?
I was diagnosed on November 21st, 2005, just 3 1/2 months after my baby girl was born. I had never heard of the disease before, and it wasn't until the doctor said it was caused by asbestos exposure did I understand its implications. I was up against something that killed 98% of the people who are diagnosed with it.
I was fortunate that my local doctor referred me to Dr. David Sugarbaker, a world renowned mesothelioma doctor. At the time, he was in Boston, but now he heads up the Lung Institute at the Baylor College of Medicine.
Dr David Sugarbaker is his name. He saved my life by performing a very invasive and risky surgery called and ExtraPleural Pneumonectomy. It consists of the removal of the affected lung, the lining where the cancer was, half of the diaphragm, the lining of the heart, plus a rib or two… the diaphragm and pericardium are then replaced by surgical gore-tex. During the surgery, a chemotherapy solution is heated to 40 degrees Fahrenheit and pumped into the chest cavity, washed around for an hour and pumped back out. After 3 months of recovery I had 4 sessions of chemo and 30 radiation sessions. All while going through this, I was caring for a baby. After a year, I finally started to heal, and have just been living my life since, doing what I can to raise awareness of mesothelioma and the dangers of asbestos.
2. What is your advice for young adults, particularly mothers, who are diagnosed with cancer?
Find support. Ask for help. For some reason, moms in particular are so against asking for help and thinking they have to do it all on their own. So many people want to help but just don't know how. Make a list and tell people what they can do for you. It can be as simple as fold laundry, or take your child or children for a while so you can rest.
Support groups are amazing. StupidCancer is a great one for young adults, they have so many resources and local groups to help you deal with the diagnosis. Seek out other resources to help you in the day to day stuff. Some house cleaning companies will give discounted or free home cleanings to cancer patients. But the best thing is just to ask for help. There is no shame in admitting you can't do it all on your own, you shouldn't have to.
3. What do cancer patients need to hear the most?
There is hope. There are more survivors now than ever before! To me, that is exciting news. Another thing is, as a friend, be there for them. During the diagnosis and treatment, I found out who my real friends were. Many people I thought would be there for me were no where to be found, but the true friends were, and they weren't the people who I thought they would be. A cancer diagnosis brings out peoples' true colors so to speak.
4. You’ve often been told you see the world through “rose colored glasses,” What does this mean for you and how did you maintain that mentality throughout your cancer experience?
I refused to be the victim. I never asked God "why me??" I never had the pity party. I met the challenge head on. Instead of listening to the news that I could die in 15 months, I looked for solutions on how to survive. I did everything I was supposed to. A sense of humor takes the fear away, sort of like in the Harry Potter Books. With the spell "Ridikkulus", it turned their greatest fear into something funny, something not threatening, it took the fear away. That is why I kept my rose colored glasses on, it kept the fear from overwhelming me.
5. What advice can you give to friends or family of those being treated for cancer? What can they do to help?
Sometimes just stepping in and doing something like offering to take the the kids for the day, or help with housework, cook a meal, but ask beforehand. I had more food than we could eat and so much went to waste.
You could organize a meal plan for them, offer to drive them to appointments. Know that cancer isn't contagious. We are sick, not dead. I'm still the same person I was before my diagnosis, please don't feel pity for me or treat me differently. More than anything we want things to be as normal as possible in a time when our foundation has been shaken to the core. We need people to be there for us. The absolute best thing to do? Ask the patient what they want and do as they wish.
Heather Von St. James is a 9-year survivor of malignant pleural mesothelioma who has a mission to provide inspiration for victims of mesothelioma while sharing her story of courage and hope.