The beautiful humanity of community

If you have been following the Canadian CML Network on Facebook, you will know that another one of our CML peers is having a transplant next month.

I met Cadence Grace last year at one of our meetings in Toronto. With her husband Bill sitting close beside her, she leaned forward to listen intently to each person as they shared their CML story. When it was her turn, her voice was low, calm and confident, but there was a slight tremble as she described how she endured months of groin pain, fatigue and bleeding from her gums that made her spit blood. It was this that made her see a doctor.

After months of trying different CML medications, all of which have failed, Cadence is preparing for a stem cell transplant. She is the fifth person in the last few months in our small Toronto group to need one. Doctors say that about two to 5% of people with CML will need a transplant. It doesn’t happen that often, but when it does, it hits hard.

Cadence has been very open with sharing her experience. She posts regularly on Facebook and writes a blog. She has been doing an amazing job of using her platform as a Canadian country music singer to raise awareness of leukemia and the importance of stem cell donation.

As the word gets out about her transplant, I have been inundated with notes from people in our Network and beyond. All of these messages are the same. They begin with best wishes, and then wind into comments like, I thought transplants don’t happen anymore in CML and If it can happen to her, then it can happen to me and This makes me feel afraid.

One young man with CML who just had his first child left a phone message saying that he was surprised how upset he was at the news. “I am just so sad,” he said. “Everyone talks about how treatable CML is. My doctor once said I should be glad this was the kind of leukemia that I got. But when I hear things like this it reminds me that it’s still cancer. It reminds me of what’s possible, and it’s hard.”

It is hard.

I had the opportunity to see a lovely coming-together of the country music industry last month at one of the many benefit concerts held for Cadence. As I listened to the bands, I watched people near the stage line dancing, their fists happily pumping the air to the loud beat of the music, their faces shiny underneath the hot lights. I caught sight of Cadence in the crowd, talking to a group of women. Beautiful in a red jacket and sporting a new cool blonde hairdo, I could see her wiping tears away from her cheeks as she spoke and I could feel that familiar sense of sadness cutting deep into my chest.

I knew the feeling well. It was partly the sting that comes with the reminder of the possibilities of CML and what could be. It always pulls me back for a moment, back to the days when I thought I might not see my kids grow up, when any plans I had for the future crumbled and I was thankful just for being able to get out of bed each morning.

But it’s more than that.

It’s also the weird surreal feeling that comes with the realization that such pain and fear could actually live right there among all the laughter and cheer and dance. I have heard others say they get a similar feeling – and not just those who live with cancer, but people who have been through something that has changed their life in a traumatic way. They use words like ‘isolation’ and ‘loneliness’ to describe it. A young woman I know with breast cancer says that she feels it most when she is with her friends.

“I consider these people my family, and they have been so good to me since my diagnosis,” she says. “Yet sometimes, I look at them laughing and joking around, talking about their jobs and how their jeans fit and the latest Netflix show they are into and I am like, ‘who are these people and why I am here?’ I feel so alone. My experience with cancer makes me different from them. It sets me apart from them in a way that’s hard to describe.”

I describe it like this: It’s the moment you realize that for the people around you, cancer is just a word happening to someone else, not them, and though they may be concerned and loving and generous with their support, they are like most of the people in the bar that night, who went home and fell into bed exhausted and satisfied by a great night, and maybe wondering what they were doing after work the next day, while Cadence and her family laid awake exhausted from worrying about what comes next.

I suppose that’s the secret to the success of communities of people who share similar experiences. We feel the fear, the anxiety and the uncertainty in ways that others don’t and can’t. All the messages that I have received about Cadence – it’s the whole ‘all-for-one thing’. When one hurts, we all hurt. We hurt for Cadence, we hurt for those before her and those who will come after. And we hurt for ourselves.

It’s beautiful humanity, in all its rawness and vulnerability. And in a world that doesn’t seem to have a whole lot of that right now, it’s a reminder of the preciousness of life, the strength of the human spirit and the power that each one of us has to lift each other up.

Cadence, we wish you all the best. When you are done with this crazy transplant thing, you owe us an acapella version of Unbreakable. Xxoo

A GoFundMe page has been set up by Cadence Grace’s family at http://www.gofundme.com/help-cadence-kick-cancers-ass Please give if you can.

Keep up with Cadence at http://www.loveandleukemia.ca

Don’t miss Living Well with CML 2019 in Toronto on June 15. RSVP at info@cmlnetwork.ca.

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