CAPE ELIZABETH — For months after I was diagnosed with colon cancer, all I wanted was a way out.
At night, my dreams were about mazes I couldn’t escape and riddles I couldn’t solve. I’d wake in a sweat, my heart and temples pounding.
In my rational mind, I understood the world never promised anyone fairness. But that couldn’t lessen the pain I felt for my wife and our daughters, who were 11 and 13 at the time. They didn’t deserve this.
In rapid succession I had colon surgery, chemotherapy, then liver surgery. It was physically and emotionally exhausting. There were times when I was on my knees in the living room, unsure of whether I would get up. For hours, I allowed my mind to drift into the past, to our lives before cancer, as if somehow there were a way back.
Anyone would understand this response. It’s the instinctive longing of a wounded heart. It’s also a trap. Dwell in your past long enough, and you’ll end up staying there for good. Thankfully, my family and friends pulled me out. They encouraged me and loved me every day, reminding me that life needs to be lived in the present.
Now, nearly two years since my diagnosis, I hardly recognize that person who dwelled so often in his grief.
My inward focus has gradually been replaced by an outward focus. Sadness has been replaced by a fierce determination to live fully, diagnosis be damned. Fear has been replaced by deep gratitude and a desire to help others. Of course I feel sadness and anger, just like anyone else, but I don’t get stuck there.
I’m still in treatment for stage 4 cancer, but I’m enjoying life, and I have realistic hope.
The immunotherapy medicines I started this summer often lead to long-term remission, even a cure, for people with my particular cancer biology. In this way I’m lucky. Only 5 percent of people with stage 4 colon cancer have the type that is responsive to this new generation of medicines. We need to find treatments that offer similar hope to the remaining 95 percent.
Which leads us to my reason for writing. I guess you could say this is me stepping into the world of patient advocacy.
I’m a communicator by training. I was a reporter for the Press Herald, and since 2011 I’ve been a self-employed writer and public relations consultant. By combining this background with my experience as a patient, I find myself in a unique position to help.
The need for advocacy is clear. Colorectal cancer, a term that encompasses cancers originating in the colon or rectum, is the second leading cause of U.S. cancer death, behind lung cancer.
About 150,000 new patients are diagnosed each year, divided nearly equally between men and women. Yet, we don’t often hear about colorectal cancer in the news, like we hear about other cancers.
This coming weekend, I’ve been invited to San Diego for a workshop hosted by Colontown, an online community of colorectal cancer patients, caregivers and survivors.
Much more than a support group, Colontown is a virtual think tank, where patients exchange ideas and moderators keep members informed on the latest scientific developments. At the Empowering Patient Leaders workshop, I’ll learn best practices for helping other colorectal cancer patients, and I plan on putting those lessons to use here in Maine.
We need to understand why more young people are developing colorectal cancer. Most of them are otherwise healthy and have no major risk factors. We need more funding for research, fairness in health insurance and stronger patient voices in drug development, clinical trials and the day-to-day practice of oncology.
Stepping up as a patient advocate also means being honest about my own experience. Popular culture wants our cancer patients to be brave and optimistic all the time.
That’s a bar no one should be expected to meet. Personally, I’ve struggled with depression, anxiety and shame, and I’ve spoken with many others who have faced those struggles as well.
So, my message to cancer patients is simple: Be kind to yourself. It’s OK to feel broken. Keep moving forward. If you break, that doesn’t mean your fight is over.
It means your fight is just beginning.
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