Giving Thanks After Cancer this Holiday Season–By Cameron Von St. James

December 21, 2012 at 9:15 am (Uncategorized)

Welcome to the first ever guest writer at Chronic Town. I’ve been wanting to open up this blog to new voices and new perspectives for a while. Fortunately, Cameron Von St. James got in touch with me and sent this moving piece about gratitude and learning to accept help after his wife was diagnosed with cancer. It’s the first time we’ve ever had the perspective of a care-giver here in Chronic Town. So, please, give Cameron and big welcome.

As the holiday season began this year, it was a moment of reflection for my family. I go back to that time seven years ago in August 2005 when we celebrated the birth of our one and only child, Lily. She was a beautiful baby who gave us so much happiness and hope for the future, particularly for the holidays. As we moved on to planning family dinners and presents, we were suddenly crushed when my wife was diagnosed with cancer.

Lily was just three months old when Heather was diagnosed with pleural malignant mesothelioma. The words are enough to make your head spin, and believe me, my head spun in so many directions when I first realized what this meant for my family. Suddenly all the hope in the world turned to doubt, anger, and fear. Why was this happening to my family? I did my best to stay positive, but all I could picture was the worst-case scenario – me a widower, and Lily growing up without ever knowing her mother. I felt that I had nothing to be thankful for that year.

We did continue to celebrate the holidays as much as we could. We had a Thanksgiving dinner together. Heather’s family flew in to celebrate Thanksgiving and Christmas that year before Heather would go for treatment in Boston. It was difficult to explain everything to them, and this was a conversation that I had been dreading as well. While explaining mesothelioma was hard enough, we had financial burdens looming over our heads at a time when medical expenses only seemed to be growing more out of control. The medical bills were piling up, and while we were both working full time, we knew that Heather would not be able to work after starting treatment, which would really put us behind. It was one of the worst moments of my life, but after Thanksgiving dinner, we sat down with Heather’s parents and discussed everything, from financial assets that we could liquidate to what Heather’s parents could help us pay for. I was mortified and embarrassed, and it would be years before I could look back on that day with anything but shame.

Now, however, I can see how mistaken I was to view it that way. I realize now how blessed we were in that time. We had a family who dropped everything they had going in an instant to be by our sides, who were willing to make huge sacrifices for us during our time of need. Thanks in large part to their help, we were able to make it through. Heather was able to beat mesothelioma, despite the odds, and we’ve enjoyed seven wonderful Christmases together with Lily, and look forward to many more to come. So this Christmas, we want to give thanks to those who helped us and also provide hope for those who are going through similar experiences. May you experience the same joy that we have together seven years later.

Cameron Von St. James is the husband of mesothelioma survivor advocate Heather Von St. James, who was diagnosed in 2005 at the age of 36. A seven year survivor of this rare cancer, Heather and Cameron now work with the Mesothelioma Cancer Alliance to bring awareness to this often neglected disease. They hope that by sharing their story, they can bring hope and inspiration to people with all forms of cancer.

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Collateral Damage

December 7, 2012 at 10:43 am (Uncategorized)

Andrew recently got us to watch The Avengers family of movies (The Avengers, Iron Man and Iron Man 2, Thor, Captain America – haven’t gotten around to The Hulk yet). I’m not much of an action movie fan, so I was quite surprised at how good they were. Given that the movie writers had some serious constraints on them—including characters already established in the earlier comic books—I was impressed by the inventiveness of the movies. Still, even though the films brought me into their imaginative world, the Mother within me could not help but notice all the property damage left in the wake of each movie. Sure, the Avengers saved the world, but they left Manhattan in rubble. Who is going to clean up that mess?

All those toppling towers and torn-up streets are meant to show us the scope of the threat the superheroes faced. It takes one hell of a villain (and a fleet of CGI wizards) to level an American city. It seems logical that every fight leaves behind some collateral damage. A fight as profound as one that ends up saving the Earth from alien invaders should warrant a mighty mess, right?

Andrew especially loved the scene in The Avengers in which Captain America instructs The Hulk to “smash.” And indeed he does. The big green guy scales skyscrapers in a few steps, hollowing out buildings with each of his feet. As I watched the images of glass showering to the pavement below, rebar sailing like new snow, and mobs of generic extras fleeing the battleground that was once their everyday lives, I realized that I’ve been experiencing my own kind of collateral damage lately.

My sarcoidosis is on the march once more—back again in my joints. My hands are swollen and twisted, making typing this post difficult. Along with these rheumatic problems, I’m having more neurological problems too—more vertigo, more blind spells, more headaches. I’m so tired I feel like I’ve got a gamma-ray infused mutant crushing the life out of me. I’ve been around this track enough times to know that I will eventually improve enough to forget how lousy I feel when the disease is flaring up…and then start the whole process again.

In my body the sarcoidosis is the Digitari— the giant, insect-like marauders that are aiming to conquer the Avengers’ world, and are quite happy to destroy it in the process. My life is rubble left behind after a big-ass sarcoidosis flare-up. No matter how well I manage my calendar, or how much I try to live a normal life, giant pieces of what is important to me fall away from me when I need 16 hours of sleep a night, when cooking a family dinner wears me out for two days, when looking at words makes me seasick. Fighting sarcoidosis strips me down to the essential elements of living. The rest is collateral damage. What gets wrecked is meaningful time with Andrew and Jay, my writing, my time with friends.

Living with a chronic illness means inhabiting a battlefield. My own body is the terrain upon which I fight for ownership of my life. I don’t have a clean-up crew to arrive after the war is waged. I’ll take the best cover I can find and go from there.

Have you ever experienced collateral damage in your own life?

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