In the company of men with cancer

In my cancer advocacy life I’ve had opportunities to do some pretty amazing things.

Shared my story at the first-ever Cologuard national sales meeting.

Spoken during a congressional briefing on the importance of increasing funding for cancer research.

Faced down my Senator in DC on the tram ride from plane side through airport security en route to a fly-in lobby day during an early attempt to repeal the Affordable Care Act.

Been part of hundreds of earned media stories about my cancer journey and advocacy work.

So many high points.

None of that compares to being at the second Gathering of Wolves outside Buffalo, NY.

The Gathering of Wolves is a soon-to-be-annual event of Man Up to Cancer, a community of men in cancerland that started on December 31, 2019, as a Facebook group. Men supporting men who are in the thick of treatment, have survived, or are caring for someone with cancer.

MUTC was founded by Trevor Maxwell, a public relations and communications guy in Maine who was diagnosed with stage-4 colorectal cancer. He saw a need and created a movement. Along the way, he’s pulled in other men like Joe Bullock, Danny Riggs, Michael Riehle, Don Helgeson, Brandon Martin, Jay Abramovitch, Ule Alexander and David De Wilde.

And now, me.

Because of his vision and the passion of the leadership, MUTC is flourishing.

About 110 of us from the United States, Canada, and one amazing guy from Belgium, are gathered at Camp Duffield in Delevan, N.Y., for a weekend of connection and storytelling.

The Facebook group, The Howling Place, has a worldwide membership of 2,300 people. Would that all of them could be here for GOW.

Listening to men share their journeys and what they’ve learned about life since the words “you have cancer” ended the lives they expected is a sacred experience.

Some are sharing publicly for the first time.

Some are old hands at telling, and impart advice they’ve learned along the way:

Embrace the now.

Find your purpose.

Live your legacy.

Above all this, show each other love.

Hugs abound. As do words of affirmation. Men, most of whom met in real life for the first time Thursday, tell each other “I love you.”

Over and over and over again.

Here’s the thing:

Men — all men but men facing cancer in particular — need this.

Our cultural norm requires men to be stoic and heroic. John Wayne. Superman. Gut through the pain. Push it down. And, above all else, keep it to yourself.

In a study of 15,000 people, cancer was associated with elevated anxiety levels and lifetime incidence of depression. Most alarmingly, in a study of 8.5 million cancer patients where 13,311 committed suicide, 83 percent were men.

Talk therapy can work, for sure. As can support groups. But, those support groups need to be for men only.

I’ve been part of coed support groups and I was glad to be part of them, but there were things I wouldn’t talk about in a room where 90 percent of group members are female.

In group I was perfectly content to talk about colostomy fails. I could get a laugh out of my group mates. But talk about the body dysmorphia that accompanies colostomy life. No way.

I wasn’t afraid to admit my anxieties, but other people had it worse than me. So I didn’t share them often.

And that thought can be deadly.

As I have listened to the stories the last couple of days, I have questioned what I bring to the table. I’m an 11-year survivor. No Evidence of Disease for more than 10 years. The standard of care for aggressive adenocarcinomas like the one in my rectum worked. The first time. No recurrence.

Other guys here — guys I love as brothers — are chemo lifers. Infections. Metastases. Expiration dates on their longevity.

Some of these men may not be here for the next gathering. None of us may be here. My reason for being here and to be a newly minted leader of this movement, is to offer support.

This movement didn’t exist when I was diagnosed in 2012. I became a member when The Howling Place was launched that New Year’s Eve four years ago.

I’ve been here ever since. Offering support. Sharing from my lived experience. Sharing my life lessons.

Every man with cancer deserves to be heard, to be loved, to know that there are other guys in his corner. They need to know they are not fighting alone.

I love all of these men.