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Living In Remission

By Betsy de Parry

Yoga

“You have cancer.” Eleven years ago, I heard those frightening words. It was follicular non-Hodgkin lymphoma (FL), considered incurable. Most treatments only slow the disease but eventually, it returns and requires stronger drugs. Remission periods decrease with each subsequent treatment. Eventually, no options remain.

In my case, two back-to-back chemotherapy regimens failed even to slow my disease. Nine months after diagnosis, I settled into a tiny hospital room for a different kind of treatment that had just become available—radioimmunotherapy (RIT), which uses targeted radiation to kill lymphoma cells. While scientific studies show that RIT produces more complete responses and longer durations of response than any other treatment, it’s an option that is all too often ignored and frequently misunderstood.

However, six weeks after my RIT treatment, there was no evidence of disease. Officially, I was in remission, but remission, to me, meant that I was in limbo, somewhere between the worlds of sickness and health. Periodic scans would determine to which world I would return. I was forced to learn to live with uncertainty as my constant companion. And that’s easier said than done.

Every one of us would love a guarantee that cancer will never recur, but no such guarantee exists. As long as we’re alive, illness—of any kind—is a risk of life itself and death will always be a certainty.

Eventually, I concluded that what I do between now and then is far more important than worrying about the inevitable. And I accepted that cancer will always be part of my life. But it will never define it. I refuse to be paralyzed by what-if’s or to live in anticipation of the inevitable.

Instead, I learned to plan—to live—with purpose and priority alongside that which cancer forced me to accept: that we can’t always shape our own destinies nor are we always in control of our lives, much as we’d all like to believe. And quick, concrete answers and predictable outcomes aren’t always possible, much as we all want them.

But cancer also taught me that impossible is only a word that may or may not be relevant. And it gave me the freedom to savor the present like never before. After all, none of us knows what’s around the next bend in life, so why not enjoy the present? A chart stamped “cured” isn’t a prerequisite.

Years passed. Scans became less frequent. I remain healthy—and deeply grateful that RIT became available in the nick of time.

I’ve met others who took RIT in clinical trials as long as 17 years ago and who—like me—have been living healthy lives since. Are we cured? We’re certainly living like we are.

 

Betsy de Parry is the author of Adventures in Cancer Land and the author of Candid Cancer, a column for AnnArbor.com. She is a frequent speaker to healthcare and patient groups and a frequent participant in awareness, educational and advocacy efforts. She serves on the Society of Nuclear Medicine and Molecular Imaging’s Patient Advocate Advisory Board.

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