Originally posted in Volume 1: Issue 1 of the CLL Tribune.
Along with food, water and shelter, connecting to what gives us a sense of meaning in our lives is a sometimes overlooked but no less vital piece to our survival. It manifests itself in all shapes and sizes and is often derived from the string of small things we do daily – being present to certain moments throughout the day, the attitudes we carry into the world, the relationships we value, and the interests we nurture.
But sometimes, through larger life events like a cancer diagnosis, we give ourselves permission or are forced to listen to ourselves a little closer to find either new meaning for our lives or a new found intensity to what we already knew was there.
After being diagnosed with small lymphocytic lymphoma (SLL) in December 2010, I began my first ever treatment in January 2011, and specifically my first round of 6 cycles of FCR. Previous to my diagnosis I brought my wife coffee every morning. It was a simple gesture packed full of meaning for me – that I woke up thinking about her every day, how much I loved and adored her, and the importance our relationship held for me. All that was wrapped up in that cup of coffee. During treatment it took on an intensity of its own and held even more meaning as it was my sort of pilgrimage through the desert to affirm my love, and perhaps also with it, my life. Only during my worst days, perhaps 2 days of every cycle, did I miss doing it.
Especially at the moments that find us in the time of our most intense suffering, identifying and holding onto the things that bring us meaning can offer us a great deal of relief.
Which brings me to this past October 2014. It’s funny, as I write this I realize I didn’t quite know the date beyond the fact that I knew it was close to Halloween. Not like the first time; I can almost remember that one to the minute. But that day we heard my oncologist say, “If I had to guess, I would say it’s back.” A few tests and a few weeks later the confirmation came, almost 4 years to the day of my initial diagnosis. That day I woke up with SLL and went to bed with chronic lymphocytic leukemia (CLL). That idea messed us up enough (no matter that we understood it was the same disease), but that was quickly buried when we heard the one thing we knew we didn’t want to hear – the dreaded 17p mutation.
But back near the end of October we didn’t know any of that. It was just enough to know it was back. We always understood completely that it would return, but I guess we had both hoped I would be in remission a little longer. Anyway, the day after learning all we did, I received a call from a therapy workshop held at a hospital well known for its cancer research. Someone had dropped out and there was an opening for me to attend. Not only was this an opportunity to further my own therapy education in the area I had been drawn to, but it was also a chance to learn from my own psychiatrist’s mentor. What I have not mentioned is that the program is a psychotherapeutic method to help terminal cancer patients connect to the meaning in their lives, and by doing so to hopefully lessen their suffering; allowing them to better live in the present instead of in their diagnosis.
I won’t lie. I didn’t want to go. It felt too close to reality and I wasn’t confident I could tolerate two full days of discussions around cancer. I think at that moment I was feeling a little terminal myself, whether reasonable or not. Thankfully, my beautiful wife saw it somewhat differently and viewed it as an opportunity to help both myself and others. As she is often adept at persuasion, she managed to convince me to reconsider and to accept the spot. She would say it was the universe quietly trying to tell me something,
As the center of my universe, I made the choice to listen to her.
The impact of the workshop completely transformed my emotional state. One of the goals of the program, as I alluded to, was to allow people to live a life with meaning while knowing they were dying – to live a dual path. I realized this is what I had been doing all along. Between my incurable cancer and my recent career change to becoming a therapist, I was finding my meaning in focusing on helping other cancer patients and survivors. In the course of doing so, I was also helping myself.
But there is even more…I volunteer at a local hospice, co-facilitating a ten-week group therapy program for survivors called Picking Up the Pieces. It was the same group that I attended after chemo, which was invaluable in my emotional/psychological recovery. So, the next week, I walked in for group and the program coordinator asked me into her office and said, “We’ve been thinking about putting a new group program together for advanced diagnosis cancer patients, and we were also thinking you would be the perfect person to create and run it.”
Sometimes the universe speaks a little louder.
I was born & raised in Toronto Canada, and currently reside in the suburbs with my wife and two step-children. In December 2010, at the age of 45, I was diagnosed with Stage 4 SLL and proceeded with 6 rounds of FCR. Prior to diagnosis I was an account manager for a global IT company – I was laid off soon after my return from chemo and decided to go back to school for psychotherapy. I currently have both a private practice, as well as co-facilitating a survivor group at the local hospice. In addition, this October, I am set to begin running my own support group for people with an advanced cancer diagnosis.
This article was written before starting treatment with Ibrutinib in mid-August of this year.
If you have comments or would like to contact Mark directly, please email him at firstname.lastname@example.org
Originally published in The CLL Tribune Q3 2015