In life with myelofibrosis, I’m learning to ring as many bells as I can

The good news: We are here, living with — and for many of us, thriving with — a cancer that we are able to manage, though sometimes better than others.

The challenging news: No matter how well we might feel and how well our medications might work, myelofibrosis (MF) is a chronic condition. There is no cure (yet), except a potentially curative stem cell transplant, a high-risk procedure many of us aren’t good candidates for, or choose not to undertake.

So we aren’t likely to “ring that bell.” You know the one I mean. We’ve all seen the compelling image of a person leaving the cancer clinic, ringing a wall-mounted bell to the applause of family, friends, and the dedicated care team members who want to celebrate the good outcome.

Ringing that bell never really crossed my mind until a few years ago, at an amazing patient advocate’s conference in the stunning, snow-capped mountains of Tucson, Arizona. Throughout the life-altering four-day sessions, attendees dug deep into what it means to live with a cancer, to survive a cancer, and to thrive after cancer was hopefully done wreaking havoc on their body or that of a loved one. Nearly every day, someone spoke about what it means to finally “ring the bell.”

I hadn’t thought about this common euphemism for reaching the end of successful treatment. I hadn’t thought about it because living with a myeloproliferative neoplasm, including MF, is a marathon, not a sprint to a cure.

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The bells appear

And then bells began to show up. I found a heavy brass ship’s bell, a gift inscribed with “Ruth,” given to me more than 40 years ago. I discovered a small collector’s thimble in my mother’s old jewelry box, a painted enamel bell. And on my recent trek in Spain, along the side of the trail, a farmer had hung a weathered bell with the sign: “Ring this if you’re grateful” (I gleefully did).

With the knowledge that with MF, I am doing exceptionally well, I am now committed to ringing every bell I am fortunate to cross paths with — whether there is an actual cure in my lifetime or not.

It started in Tucson, where a spectacular hand-tooled gong nearly 5 feet in diameter reflects the bright Arizona sun and sparkling starry nights. It took the strength of determination to lift the heavy mallet and take each powerful swing. The awe-inspiring vibration of this Asian instrument reverberated with a soul-stirring sound I’ll never forget. And that tiny thimble gets jiggled now and then with its happy, lingering ting-a-ling. The practice (or its symbolism) never gets old.

And the ship’s bell? I hadn’t seen it in years until I recently cleared out the carriage house before selling our beloved home built in 1863 in Upstate New York. It’s too heavy for me to hang on my own, so it’s sitting on my new back porch, waiting for some stronger hands. In the meantime, I know that one day soon I’ll lift it just a few feet off the floor, high enough to hear its powerfully deep tone.

Each person with a chronic condition deals differently with their emotional ups and downs, changing symptoms, or potentially better treatments. For me, I choose to ring as many bells as I encounter, with the hope that my myelofibrosis will continue to respond well to my combination drug therapy.

I am fortunate. I am grateful. And ringing each bell is a gift I give myself as a reminder.

Note: Myelofibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myelofibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myelofibrosis.