Caregiver Stories: Cameron and Heather Von St. James and Mesothelioma

Cameron Von St. James is the husband of mesothelioma survivor Heather Von St. James. Cameron has written about his experiences in the past (including this piece in the Huffington Post) and works hard to spread the word about mesothelioma and cancer support generally. I have been wanting to share stories of patients and caregivers on this blog, so when Cameron contacted me about helping to spread the word, it seemed like a good opportunity to do so. Here is Cameron’s story:

My Life As My Wife’s Caregiver

Cam_Lil_HVSJ
The Von St. James Family

I’ve only talked with my wife Heather once about what I went through as her caregiver and with this article, I hope to share more. My wife Heather was diagnosed with pleural malignant mesothelioma at the age of 36, just three short months after giving birth to our daughter Lily. Heather was exposed to asbestos when she was a little girl. Her father worked in the construction business and would come home with his jacket covered in white dust. Unbeknownst to Heather, that jacket was covered in asbestos. It was her favorite jacket to put on to go outside in the cold South Dakota winters. Her favorite jacket would later become her worst nightmare.

Three months before Heather’s mesothelioma diagnosis, we celebrated the birth of our only child, Lily. We went from being fantastically happy to scared and uncertain. I remember the morning her doctor said the word “mesothelioma” for the first time. It was like our whole world came crashing down. We went from the excitement of having a new baby to a cancer diagnosis.

Immediately after the diagnosis rage consumed me, then came the frustration and devastating fear. At times, I couldn’t speak without cursing and swearing, but I understood I had to be strong for my wife and our daughter. I never wanted my wife to see my doubts. I needed to be her source of confidence and security.

There were numerous days when I felt so defeated having so much on my plate. I had to cope with everything, from my job and the constant traveling, to caring for our daughter and looking after our pets. I tried to focus on the most important tasks and I realized I needed to accept those offers from others. We were fortunate and I don’t know what I would have done without the people we call friends. Still, despite all of the help, at times I felt weighed down with obligations.

Just after her surgery in Boston, Heather went to South Dakota for a visit with her parents. She was recouping and getting ready for the next stage of treatment, chemotherapy and radiation. Our daughter also stayed there while I was working to support our family and trying to maintain our home. Two months passed and during this time I only saw Heather and Lily once. It became very difficult not being able to be with them during this difficult time. But, I needed to support them back at home while Heather was recovering.

One Friday after work, I drove all night in the middle of a snowstorm to be able to see them. I took only a short nap in the car while waiting for the plows to clear the roads. When I finally got there on Saturday morning I was exhausted. I spent the day and a few hours on Sunday morning with them before having to leave again. Then I drove the 11 hours back to our home in Roseville, Minnesota without stopping, to be at work on Monday morning.

It was hard being apart from my wife and daughter, but I couldn’t work and care for Lily at the same time. The tough decisions we had to make are simply things we had to endure. The cancer complicated most of our options, but I am comfortable knowing we still have choices and decisions to make together.

By Cameron Von St. James

Jana Pochop on Death and Dying (in song)

For most of human history, it was ordinary for families and even close friends to be present for the death of a loved one. People knew the sights, sounds, and smell of death. For a sick person to die alone would be considered an extreme misfortune. But the 20th century moved death from home to hospital. As Philippe Aries wrote, “The hospital is the only place where death is sure of escaping a visibility—or what remains of it—that is hereafter regarded as unsuitable and morbid.” While it was once a great tragedy to die alone, many now consider it a tragedy when one must be present for the death of a loved one.

To be sure, no one who witnesses the death of a loved one escapes trauma. Death is painful, and even those who are prepared for it often panic at the last moment. When people plan to die at home but end up dying in a hospital, caregiver panic is frequently the reason. The last moments of life can be excruciating to watch, and caregivers often call an ambulance to bring relief for their loved ones.

Caregivers who have a home healthcare provider to reassure them do much better. When the family knows the process is normal and unavoidable, they are able to brace themselves against the pain and endure it to the end. The advantage of hospice over home death is that professionals are responsible for all medical decisions, and the family can focus on comforting their loved one, grieving, and saying farewell.

I’ve thought a great deal about this process and how it may improve our society if we once again become familiar with death and dying in a more personal manner. I honestly believe this experience gives people a deeper experience of life, grief, love, and loss. I’ve read about it, and I’ve written about it, but I was surprised to hear so many of my thoughts on the subject expressed in a folk song of just a few minutes.

Last night I went to see a performance by Susan Gibson, an extremely talented singer/songwriter. During the second set, Gibson invited Jana Pochop on stage to sing two songs. The first was about what you will do in the moment when your soul leaves your body. The imagery was compelling and profoundly sad. When this song is available, I would recommend it to help families prepare for the imminent death of a loved one. I also believe the song will be appropriate for a medical humanities curriculum.

I didn’t intend for this blog to ever have anything to do with folk music, but I also did not anticipate folk music intersecting my interests in medical humanities, caregiver narratives, home/hospice death, and survivor stories. The following video is not of the song in question, but it gives you an idea of Jana Pochop’s talents.

[youtube=http://www.youtube.com/watch?v=fnx_lNuyoNA]