A mesothelioma survivor on patient-centered care: For a reason

An interview with Heather von St. James:

Q: How would you define “patient-centered care?”

A. The nurses at Brigham and Women’s Hospital in Boston were really tuned in with my needs.  I really wanted orange Jello.  I couldn’t eat anything.  My nurse called her husband.  He went to four grocery stores, found some, and brought it to the hospital.  I ate that Jello like it was the best food I ever had!

Q. Is there anything the medical team could do to give you more peace of mind?

A.  A cancer diagnosis is just as much about the loved ones, the children, as it is about the patient themselves.  A lot of medical places miss that - it almost affects the family more.  The cancer patient has it together, but the family is falling apart.  Catering to the whole family is better, so the mesothelioma program concentrates on the whole family.

People [with mesothelioma, while at the hospital] are far away from home:  one-third are from outside the Northeast.  Every Wednesday, in a conference room on the 11^th floor, there’s a caregiver and support meeting with two social workers and two clergy, and we talk.  The Brigham and Women’s staff fostered our talking to the whole family.  That’s through the international mesothelioma program.  

When this happens to a woman, suddenly her husband is in a caregiver role.  The others in the group were all wives.  They took my husband under their wing.  That set my mind at ease; I was worried about him, and that eased it.  Knowing there are people looking out for your spouse, or daughter, etc., is great, so you can concentrate on getting better.  

I was in Boston recently, for a checkup (cancer-free! Yay!).    I always speak at new patient orientations.  It’s a terrifying disease, because people are told, “You have six months to live, so get your affairs in order.”  But they see me and say, There’s hope. 

God put me on earth for a reason – for that hope.

Read the first part of Heather von St. James’ mesothelioma story, and see Heather's blog.  Thanks to Heather for the interview.

After Mesothelioma: How My Village Helped Save My Life

Heather von St. James' story:

After the birth of my daughter Lily on August 4, 2005, I came to realize the meaning of the saying, “it takes a village.” Our village consisted of my parents, my in-laws and a multitude of friends. I had experienced a pretty easy pregnancy and after the birth everything was going well. Unfortunately, things were not going to stay that way.


A month after returning to work, I began feeling tired and out of breath. It would have been easy just to chalk it up to having a newborn, but I felt something was wrong. I went to my doctor who ran several tests on me before finding out the reason for my symptoms. It turns out I had malignant pleural mesothelioma, which is a cancer that affects the lining of the lung. Apparently it was caused by unknowing asbestos exposure as a child.

I was told that if I didn’t undergo any treatment I had about fifteen months left to live. My first worries were about Lily and how she and my husband would cope if I wasn’t around. These fears led me to choosing one of the most drastic mesothelioma treatment options available. On February 2, 2006, I had my left lung removed in a Boston hospital. It took 18 days of recovery in the hospital and then an additional two months recovery before my body was strong enough to begin chemotherapy, followed by radiation. Remember, through all of this I was still a first time mom with a new baby.

All of this would have been impossible if not for the village that supported us. It was interesting to see who was part of our village. People we thought we could count on disappeared and some we didn’t expect to help rose to the challenge.

During our stay in Boston, Lily stayed with my parents in South Dakota who went from being grandparents to being primary caregivers. Fortunately, they also had their own village supporting them. Girls that I babysat in my youth became babysitters for my girl while my parents went to work. Church members provided much needed love and support. Meanwhile in Boston, we met new friends who were going through the same experience were and we felt their love and support for us.

It was hard to be away from Lily as she was experiencing childhood firsts.  All I had was pictures my mom sent.  My husband printed grainy black and white copies of these milestones off a community hospital printer. Through all this, I keep the thought forefront in my mind that my daughter was the reason I was away from her and fighting for my life.

My message to everyone else is to embrace whatever challenges life gives you. Even with all I went through, I am thankful for what I experienced.  My favorite quote is, “Life is a banquet and most poor suckers are starving to death.” Embrace your life for all it is worth.

Thanks to Heather for sharing her story.  Read another story about a cancer survivor, and see Heather von St. James' blog.