When my brother was diagnosed three years ago with a rare Klatskin tumor (cancer of the bile duct), the prognosis was pretty bad. Maybe two years to live, the doctors told him and his stunned family. Just a week before, he'd been eating Christmas dinner with all of us, looking a little punky, maybe, but gobbling up shrimp cocktail and prime rib. How could it be?
Did I mention that was three years ago? Within months of surgery and intense treatment, my brother was back to work, and soon after, back to his pre-illness weight. He’s set to walk his gorgeous daughter down the aisle at her wedding this August. Regardless of what uncertainties the future may hold, there have already been more unexpected blessings than we could have hoped for.
But I remember back then looking up his diagnosis, and reading message boards from others experiencing this disease. The news was grim. Their stories were depressing. What I have learned since then, through my patient safety work, is that many of those who do really well—those who occupy the “upper outlier” curve on a scale of possible outcomes for someone with a bad disease-- go on with their lives. They tend to stop writing.
That’s why I’m taking a moment here to recognize the “miracles” of recovery, of lives saved when doubts were strongest, and to celebrate the people who stepped up and took on the responsibility and opportunity to be a caregiver. Each of you inspires others to have hope.
At his request, I’m happy to share here the story of Cameron Von St. James, a Minnesota man who stepped up when his young wife, the mother of their newborn baby girl, received a devastating cancer diagnosis. Congrats, Heather, for your strength and determination, and to you, Cameron, for finding a strength you never knew you had.
Who are your care giving heroes? Who made all the difference to your recovery?
Cameron's story:
In the fall of 2005, at 36 years old, my wife Heather received a devastating diagnosis of malignant pleural mesothelioma, a rare and deadly cancer of the lining of the lung caused by exposure to asbestos. Years before, her dad had worked in construction and handled asbestos a lot, tracking it home to his family on his gloves, boots and coat. No one knew it was dangerous back then. It can take decades for the disease to develop.
But somehow, here we were. On the day we got this stunning news, Lily, our first and only child, was just three months old. We were supposed to be getting ready for her first Christmas. We’d been excitedly planning all the ways we could make it particularly special for our new little daughter. But instead of hanging lights and picking out a tree, we were confronted with selecting a team to entrust with Heather’s life. Without immediate intervention by a specialist, she was given 15 months to live.
After explaining mesothelioma, the doctor laid out our treatment choices. One was a local university hospital, an excellent regional facility that unfortunately had no mesothelioma program, or Dr. David Sugarbaker, a mesothelioma specialist in Boston. As I waited for my shocked and terrified wife to respond, I realized that she needed my help. She was looking at me pleadingly, and I knew I needed to take charge for her. I looked up at the doctor and told him to get us to Boston.
Unprepared, ill-equipped and uncertain, I became a cancer caregiver that day, thrust into a long, difficult journey to beat Heather’s cancer.
The following two months were chaotic. Heather was unable to work as she began the full time job of fighting cancer. My days were consumed by taking care of my wife and daughter and managing medical appointments. Overwhelmed, I was only able to work part-time.
More than once I found myself crying on the kitchen floor, out of sight and earshot of those who needed me, wishing it would all just go away. I was careful not to let Heather see my terror—my fear of losing her to cancer, becoming a destitute single father, and raising a beautiful daughter who would never know her mother. The burden of bearing these fears in private—of being strong for Heather—was made no easier by knowing it was the only choice.
Family, friends and sometimes even strangers offered financial help and words of comfort. I can never thank all of them enough. If any cancer caregiver asks me for advice, I tell them to accept all offers of help. The burden is lighter when you don’t carry it alone. Take advantage of every resource, and don’t be too proud to ask for help. There is no reason that you should face this challenge alone.
Mesothelioma surgery, radiation, chemotherapy and the support of friends and family helped Heather beat the odds; she has now been cancer-free for six years. Although it took a while for life to return to normal, our battle with cancer taught me valuable lessons. I now fully understand how precious our time is.
Taking care of someone with cancer is probably the toughest challenge you will face. You will have days filled with uncertainty and anxiety. You’ll get sad and angry. Know it’s ok to have bad days and fall short of your best. But today, I know how important it is to never, ever give up hope.
Two years into our ordeal, I was working full-time, taking care of Heather and Lily, and obtaining an education in information technology. My experience as a caregiver gave me the skills and the courage I needed to pursue my dream of returning to school. I eventually graduated with honors, and was given the privilege of speaking at the ceremony. In my graduation speech, I told the crowd how I would have never dreamed this could happen when first faced with Heather’s mesothelioma. My wife’s courage inspired me and taught me that if we keep hope alive, and trust our abilities, we can accomplish anything.
Thank you, Cameron, Heather and Lily, for a story that also coincides with national Mesothelioma Awareness Week, April 1-7.
Give a shout-out to caregivers everywhere! Give others inspiration!
Did I mention that was three years ago? Within months of surgery and intense treatment, my brother was back to work, and soon after, back to his pre-illness weight. He’s set to walk his gorgeous daughter down the aisle at her wedding this August. Regardless of what uncertainties the future may hold, there have already been more unexpected blessings than we could have hoped for.
But I remember back then looking up his diagnosis, and reading message boards from others experiencing this disease. The news was grim. Their stories were depressing. What I have learned since then, through my patient safety work, is that many of those who do really well—those who occupy the “upper outlier” curve on a scale of possible outcomes for someone with a bad disease-- go on with their lives. They tend to stop writing.
That’s why I’m taking a moment here to recognize the “miracles” of recovery, of lives saved when doubts were strongest, and to celebrate the people who stepped up and took on the responsibility and opportunity to be a caregiver. Each of you inspires others to have hope.
At his request, I’m happy to share here the story of Cameron Von St. James, a Minnesota man who stepped up when his young wife, the mother of their newborn baby girl, received a devastating cancer diagnosis. Congrats, Heather, for your strength and determination, and to you, Cameron, for finding a strength you never knew you had.
Who are your care giving heroes? Who made all the difference to your recovery?
Cameron's story:
In the fall of 2005, at 36 years old, my wife Heather received a devastating diagnosis of malignant pleural mesothelioma, a rare and deadly cancer of the lining of the lung caused by exposure to asbestos. Years before, her dad had worked in construction and handled asbestos a lot, tracking it home to his family on his gloves, boots and coat. No one knew it was dangerous back then. It can take decades for the disease to develop.
But somehow, here we were. On the day we got this stunning news, Lily, our first and only child, was just three months old. We were supposed to be getting ready for her first Christmas. We’d been excitedly planning all the ways we could make it particularly special for our new little daughter. But instead of hanging lights and picking out a tree, we were confronted with selecting a team to entrust with Heather’s life. Without immediate intervention by a specialist, she was given 15 months to live.
After explaining mesothelioma, the doctor laid out our treatment choices. One was a local university hospital, an excellent regional facility that unfortunately had no mesothelioma program, or Dr. David Sugarbaker, a mesothelioma specialist in Boston. As I waited for my shocked and terrified wife to respond, I realized that she needed my help. She was looking at me pleadingly, and I knew I needed to take charge for her. I looked up at the doctor and told him to get us to Boston.
Unprepared, ill-equipped and uncertain, I became a cancer caregiver that day, thrust into a long, difficult journey to beat Heather’s cancer.
The following two months were chaotic. Heather was unable to work as she began the full time job of fighting cancer. My days were consumed by taking care of my wife and daughter and managing medical appointments. Overwhelmed, I was only able to work part-time.
More than once I found myself crying on the kitchen floor, out of sight and earshot of those who needed me, wishing it would all just go away. I was careful not to let Heather see my terror—my fear of losing her to cancer, becoming a destitute single father, and raising a beautiful daughter who would never know her mother. The burden of bearing these fears in private—of being strong for Heather—was made no easier by knowing it was the only choice.
Family, friends and sometimes even strangers offered financial help and words of comfort. I can never thank all of them enough. If any cancer caregiver asks me for advice, I tell them to accept all offers of help. The burden is lighter when you don’t carry it alone. Take advantage of every resource, and don’t be too proud to ask for help. There is no reason that you should face this challenge alone.
Mesothelioma surgery, radiation, chemotherapy and the support of friends and family helped Heather beat the odds; she has now been cancer-free for six years. Although it took a while for life to return to normal, our battle with cancer taught me valuable lessons. I now fully understand how precious our time is.
Taking care of someone with cancer is probably the toughest challenge you will face. You will have days filled with uncertainty and anxiety. You’ll get sad and angry. Know it’s ok to have bad days and fall short of your best. But today, I know how important it is to never, ever give up hope.
Two years into our ordeal, I was working full-time, taking care of Heather and Lily, and obtaining an education in information technology. My experience as a caregiver gave me the skills and the courage I needed to pursue my dream of returning to school. I eventually graduated with honors, and was given the privilege of speaking at the ceremony. In my graduation speech, I told the crowd how I would have never dreamed this could happen when first faced with Heather’s mesothelioma. My wife’s courage inspired me and taught me that if we keep hope alive, and trust our abilities, we can accomplish anything.
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| Heather, Lily & Cameron today |
Thank you, Cameron, Heather and Lily, for a story that also coincides with national Mesothelioma Awareness Week, April 1-7.
And to that I would share a thought borrowed from Eleanor Roosevelt:
"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do."
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