Guest Blogger: Grappling with Being a Caregiver

Note from Lisa:  This post is written by guest blogger Cameron Von St. James.  He and his wife, Heather, both write for a mesothelioma blog (http://www.mesothelioma.com/blog/).  Cameron also writes articles for other cancer blogs about his care-giving experience and recently wrote an article for Huffington Post.

How I Grappled with Being a Caregiver for My Wife

On November 21, 2005, my life changed forever. On this day, my wife, Heather, was diagnosed with malignant pleural mesothelioma: a rare and very deadly form of cancer. I did not realize at the time that it was also the day I would have to grapple with my new role as caregiver for someone diagnosed with cancer. A little over three months prior to this unforeseen mesothelioma diagnosis, Heather and I had celebrated the birth of our first and only child, a daughter named Lily. We had been looking forward to spending this time of the year rejoicing in the holidays and documenting Lily’s first Christmas – instead, our plans changed and we had to begin a desperate fight for Heather’s life.

The extensive nature of being a caregiver for someone diagnosed with cancer weighed on me before Heather and I even left the doctor’s office that first day. The doctor informed us we would need to seek out another hospital for treatment, presenting us with three options: a local university hospital, an acclaimed regional hospital that did not have a developed mesothelioma program, or a Boston-based doctor who specialized in mesothelioma named Doctor David Sugarbaker. My wife was in such a state of shock and disbelief by the diagnosis that she could not comprehend making that decision in that instant; instead, I told our doctor to make us an appointment in Boston right away. This was the first of many tough decisions I would have to make in my new caregiver role.

Over the course of the next two months, our once consistent daily routines were shattered. Although Heather and I had both been working full-time prior to her diagnosis, Heather was now unable to work and I was forced to work part-time in order to be there for her and Lily. I was immensely overwhelmed with scheduling and attending Heather’s doctor’s appointments, coordinating travel arrangements through Boston, and caring for Lily. I found myself consistently paranoid with fear that Heather would die as a result of the disease, and we would have spent all of our money fighting it. I was not prepared to be a bankrupt widower with a young daughter. I would become so overwhelmed by this fear that at times, I would bawl on the kitchen floor, consumed with hopelessness and helplessness. Although I wanted everything to go away, I never allowed Heather to see me in a weak, compromised emotional state. I needed to be a rock for her and I always was.

Heather and I were incredibly blessed with immense amounts of comforting words and financial assistance from friends, family members, and even strangers. There is never a way that we can fully thank those who had reached out to us. One of the biggest pieces of advice that I can offer to anyone in a similar situation is that if someone offers help, you should most definitely take it. You always will appreciate one less thing to worry about, you have enough on your plate. Also, it’s nice to be reminded that you are not alone in fighting this disease. There are always people you can call upon to lighten your load and alleviate your concerns. Utilize all your resources.

To say that taking on the role of caregiver for someone with cancer is difficult would be an understatement. You will experience a range of emotions in this position that you never thought possible prior to the diagnosis. This will most likely be the toughest feat you will have to face, because unlike the stressors of college or work, you do not have the option to walk away or quit. Remember to not allow your emotions to take hostage over you. You are allowed to have good and bad days – especially with the circumstances, you cannot always be expected to put up a brave front. Hope is real and people want to help you – reach out and utilize all of your resources to stay sane. Although it may be incredibly difficult at times, it is definitely possible, you just need to believe.

Despite the odds, Heather went through mesothelioma surgery, radiation, and chemotherapy to fight her cancer, and in the end she won the battle. It has been seven years since her initial diagnosis and she remains cancer free. Although it took years, I can finally say that my life is back to a normal routine.  Heather and I were incredibly blessed to have so much love and support during our cancer battle, and now we wish to help others in a small way by sharing our story of hope. 

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Thank you, Cameron, for sharing your story.

Lisa