A few months ago, I was out for a walk in the early morning and found a single puzzle piece on the sidewalk.
By: Alyssa Burkus Rolf
A few months ago, I was out for a walk in the early morning and found a single puzzle piece on the sidewalk. I left it there, hoping the puzzle owner would find it again, and be able to complete the picture. As I walked away, it reminded me that I too have a missing puzzle piece, as I still have no idea how or what caused the lymphoma cancer I was diagnosed with over ten years ago.
In the weeks and months following my diagnosis, I spent hours reading studies and trying to find information on causes of lymphoma, and follicular lymphoma in particular. What caused a breakdown in my body that allowed this cancer to establish itself? Could I have prevented it? Was it something I did wrong? It was difficult for me to process my diagnosis because I could not pinpoint the activities or series of events that led up to this point. And more importantly, was there something I should do differently to prevent it from recurring?
If you search “causes of lymphoma” in Google, there are a number of web pages that try to provide possible answers. Connections have been made to carcinogens, and pesticides in particular; others mention exposure to various viruses, and even black hair dye. Yet no one can really adequately explain or confirm what likely led to the occurrence of cancer in my body.
How do you come to terms with an illness that persists and has no known cause or cure? This has been the heart of the issue for me since my diagnosis. It would be easy for me to hide away, limit any known exposure, and try to wait, protected, until a cure or cause is found. I realized quickly though that the damage has already been done. This disease has taken root in my body. And while I am not ok to peacefully co-exist with it, I am resigned to the fact that it will play a role in my life for a while, potentially for the rest of my life. How I live during that time, with this disease, is in large part up to me. For years, I have focused on understanding the whys of it, but now, my life is focused more on how and what. How can my experience provide useful information to others? How can I make each day matter – matter to me, matter to those I love? How can I be mindful each day of the beauty and precious nature of life, of the gift that each of us has been given? These are the ways I have changed my thinking – they were ideas always present, but I allowed the “why me” conversations in my head to be the loudest.
Finding peace with the unknown has become a significant theme for this journey of mine, and I’m using the life lessons from it to influence my thinking and actions in the rest of my life. It is one theme, but it is not going to be the only theme. I am mindful of not wanting just to “watch and wait” through the rest of my life, just trying to live and live well. Some day soon, we will know for certain what causes lymphoma, but I am not going to wait until those missing puzzle pieces are found to be able to see and experience the full picture of my life.
Please send your thoughts and own stories – I would love to hear from you. You can reach me via email at alyssa(at)lymphoma(dot)ca, or follow me on Twitter here:@alyssaburkus