I’m living with incurable cancer, like Olivia Newton-John did for 30 years. This is my reality

At 12 years old, I longed for her blonde ponytail, perfect proportions and angelic voice in Grease. Now 56, I’d settle for her 30 years of living with cancer. Time makes you compromise on your dreams.

The question hovering over every cancer patient is the one that we hate: How long have I got? I was 44 years old when diagnosed with incurable yet treatable lymphoma, Waldenstrom’s Macroglobulinemia (WM). If you Google life expectancy (please don’t, friends and family), you will find a whole mess of depressing data and inaccuracies about how long I can expect to live.

But cancer can be a long-term, chronic illness. Dame Olivia Newton-John was living proof.

For thirty years she lived with breast cancer, experiencing decades of remission and recurrence before the disease ultimately metastasized to her bones. But in between those medical moments, she made a meaningful difference. She modeled what to do with the time we’re given and how to make an impact before saying goodbye.

Diagnosed in 1992 on the same weekend her father died of cancer, she consciously chose hope and positivity over despair: “My dream is that we realize a world beyond cancer. I honestly believe we can do it!” She lived a life of action, establishing the Olivia Newton-John Foundation Fund and building the Olivia Newton-John Cancer Wellness and Research Centre. After her cancer metastasized, she wrote the New York Times bestseller “Don’t Stop Believin.’”

I volunteer for a cancer warmline. Many patients who reach out for peer-to-peer phone support through the IWMF’s Lifeline are feeling a bit panicky before I even answer their call. They have doom-scrolled and discovered that the median survival for our blood cancer is somewhere between five years (dead wrong) and sixteen years from diagnosis. They ask about making a will and getting their affairs in order. I tell them to slow way down. But their countdown clock is already ticking. They can’t ignore the expiration date stamped permanently on their forehead.

Although incurable, WM is an indolent (slow-growing), lazy-ass cancer that can be treated, much like a chronic illness. The mantra is: you will die with this disease, not from it. Because life expectancy rates were calculated in the past from patients diagnosed in their 70s, that does not inform those of us diagnosed in our 40s. Living well with WM for the past twelve years, I know we do not have the option of “remission” — our cancer is forever. But we do get “intermissions” in between treatments. You can live fully and joyfully in the space between haggard worry. But it takes practice. My loving husband of 32 years and my 25-year-old twin sons have been mastering this game with me.

When time is finite, how do you live in the dark shadow of diagnosis and disease while still enjoying each day to the fullest? Can life ever be fun again or are we destined to feel doomed?

I so wish the question of: How long have I got? could transform into: How much do I love? After diagnosis, the noise and nonsense of life often fades into the background. In the quieter moments, the real question surfaces: How do I want to love others? How do I want to be loved?

There are consequences to the choices we make each day: the company we keep, the progress we stymie with procrastination, the blame we pile on others, the judgement we cruelly hurl at ourselves and the regret over fatal hesitations of the past. These all come out to play in the midnight shadows of mortality. Staring us in the face, our choices ask accusingly: Do you really have that kind of time to waste?

With less time to piss away, and more certainty about the slipperiness of forever, we cannot afford to dilly-dally, lollygag or deliberate. We must breathe in every moment and know the buzzer’s ring is waiting. This makes life more precious and precarious. We tend to value what is most fragile and delicate.

Which I love. And I hate.

Because it would be delicious to waste some serious time. To bum around purposelessly, binge on idiocy, stay up irresponsibly late, not return emails for a whole month. To not care one wit. But with the preciousness of time’s value comes an immense responsibility to be purposeful, meaningful and brimming with intentionality.

As if that is not enough, we are even supposed to appear inspiring to others. To be honest, that adds insult to injury. Be productive and positive about your cancer all while exuding profound grace and humility? Sometimes I want to say: Screw inspiring. I want to be one of the bad kids who ignores consequences, does not heed warnings and blows past good judgment.

I come from a family where my people die far too young and cancer quite literally runs in our blood. After 38 years of eating healthily, not smoking, avoiding red-dye number 2 and baby powder, and going to yoga and meditation retreats to downward-dog her ass, lung cancer killed my sister before the age of 40. When dying in the hospital, she laughingly told me to consider abandoning clean living. Instead, she said, I should get out there to enjoy it all: smoke, drink, curse, eat French fries and chocolate milkshakes every damn day for breakfast.

I love that fantasy. It would feel amazing to hang cancer up on a hook and live life with reckless abandon, for the carefree fun of it. To live each day like it was not my last. Lower the stakes, make regrettable choices, forget Instagram inspiration-porn, embrace stupid sweet simplicity.

But Olivia Newton-John set the bar high.

The problem is that I totally buy into her vision. I am deeply inspired and moved by her lived example of philanthropy, tireless service and acts of loving kindness. So, I can’t hang it up just yet. She’d tell us there are more volunteer hours to clock, more cancer nonprofit boards to sit on, more work to be done and more books to write to make life easier for the next cancer patient coming down the path.

I pray we’re gifted the years to enjoy it all. But in between all that Dame-inspired goodness, I will be certain to stop and savor some fries and chocolate shakes for breakfast, and remember how much, and how badly, I want to love.

Lisa J. Wise, M.Ed. is working on an essay collection titled INCURABLE AND OTHER COMPLIMENTS about living fearlessly with third-generation lymphoma. More at lisajwise.com