Heather Von St. James
Courageous Mother, Wife and Survivor of Mesothelioma
It was December 5, 2005, we were on a plane to Boston. We had an appointment set for the following day to see Dr. David Sugarbaker and the International Mesothelioma program team at Brigham and Women’s Hospital. We were scheduled to be at the hospital early in the morning for an orientation with the team, followed by a slew of tests in the afternoon.
We checked in to the Longwood Inn guesthouse, a quaint victorian mansion with 22 rooms, a common dining room, sitting room and fully equipped kitchen. Most rooms, like ours, had private bathrooms, but some had to share. We were able to save a lot of money by staying there since it did have the kitchen where we could cook our own meals instead of going out to eat all the time. Money was very tight, so every little bit helped. Another bonus was that it was really close to the hospital. Our first night there, I didn’t sleep much. I emailed all our friends and family on a borrowed laptop, to let everyone know we made it ok. I didn’t know about such things as Carepages, or Caring Bridge at the time, so email was my lifeline to friends and family.
We arrived at the hospital and walked down the long hallway known as The Pike. The Pike is lined with offices and different clinics. To say Brigham and Women’s Hospital is huge would be an understatement. As we walked to the end of The Pike, we were greeted by very nice man. We were lost, or thought we were, so we asked him if he knew where the mesothelioma orientation was being held. With a pleasant smile, he held out his hand and introduced himself as Dr. Sugarbaker. He knew right away who I was and welcomed us. I felt a hundred times better after that unexpected meeting. We went to a little waiting area, while other patients as well as members of the IMP team trickled in. Shortly thereafter, three people who would soon become a very important part of our everyday life in Boston showed up – Charlene, Ginny and George. Charlene was the social worker for the program. Ginny and George were the two chaplains on staff to help with the spiritual needs of patients. We were all led into a room at the end of a long hallway and sat around a large conference table. I sat at one end of the table, wide-eyed and nervous. As I looked around the room, I saw two other men, much older than I. One was with his son and three daughters, and the other was with his wife and his son. Gazing across the room, the gravity of the situation hit me. I was only 36 and just had a baby. My career was starting to really take off and all I could think was ...
I DON’T BELONG HERE!
I started to choke up and tears ran from the corners of my eyes. My heart was beating faster, and my breath was coming in short gasps. Panic and anxiety started to overwhelm me. Dr. Sugarbaker had entered and started talking by this time, but I couldn’t hear him. All I could hear was my heart beating. I got up out of my chair, excused myself and rushed out of the room while stifling a sob. It was too much for me to take. I stood in the hallway and cried. I had cancer. Not just any cancer, but mesothelioma – a deadly cancer. I shook my head, looked up at the ceiling toward God and asked, “what am I doing here!?”
Charlene, the social worker came out and gently put her hand on my shoulder. She didn’t have to say a word. She knew all I needed was a little time. She hugged me and asked if I was ready to go back into the orientation. I swallowed hard, wiped my tears, took a breath and said yes. I didn’t need to explain anything. Everyone in that room was there for the same reason. We all had a mesothelioma diagnosis, and were all seeking one thing -- Hope.
We introduced ourselves and gave a little history as to why we where there. When I informed everyone that I had a 3-month-old baby at home, the sympathy in their eyes was unmistakable. How tragic, and yes, it was. But it was tragic for ALL of us in that room, and for every other patient who had ever walked through those doors.
The next few hours were spent undergoing blood tests, scans, and breathing tests. Finally, I had a consult with Dr. Sugarbaker himself. He told us that a surgical biopsy was to be done to confirm the diagnosis. There is always a chance that it may have been misdiagnosed, so this was the proof they needed before proceeding. I was scheduled for a surgical biopsy on Thursday. Wednesday was to be spent in pre-surgery diagnostics. I needed an MRI, an echocardiogram, blood work, and other items I hardly remember.
By now, my sister was flying out to be with us so we weren’t alone. I was happy to have the extra support on the way – especially for my husband. Wednesday morning, I started all the tests with an MRI at 6:30 at an off campus hospital site. We got a cab to take us there at an ungodly early hour to sit in the waiting room. It was in that waiting room, that my husband and I met two people who would later become family to us -- Doug and Jane Burnett. Doug had mesothelioma and was there for the same reason I was. It’s funny how things happen, and how people come into your life right when you need them. He and Jane had been at the orientation the week before, and Doug was scheduled for the biopsy the same day I was. We exchanged phone numbers, emails and any other information we could think of. We wished each other well, and went our separate ways to our other appointments. Soon thereafter, my sister arrived and the three of us spent the rest of the day in each other’s company.
One of the couples we met at the orientation that morning checked into Longwood Inn that afternoon. They were convinced after speaking with us and learning how affordable it was. Bill and Gloria were from Maine, where Bill had been diagnosed with mesothelioma after months of misdiagnosis with everything from COPD to pneumonia. Now he was in Boston, hoping for a miracle – just like we were. We spent the evening sitting around the huge common dinning room table in the main room of the home. We laughed, talked and got to know each other. We were all aching for some semblance of normalcy in this surreal life we had been thrown into.
December 22nd, 2005 I got the phone call from Angie, one of the PA’s that worked for Dr Sugarbaker: “Yes, you have mesothelioma, we have you scheduled for surgery on February 2nd.” I was speechless.