Here’s The Most Important Question to Ask Yourself After a Cancer Diagnosis

(Katie Couric Media) – An excerpt from the moving book Fatal to Fearless.

What’s it like to survive cancer not once, but twice? That’s the reality author and businesswoman Kathy Giusti faced: Diagnosed with multiple myeloma at age 37 — and given three years to live — she was diagnosed more than 25 years later with breast cancer.

Giusti’s new book, Fatal to Fearless, is about her experience of learning how to be an advocate for her own care, and how she came to better understand America’s opaque and labyrinthine healthcare system. Here, we bring you an excerpt from her book that’ll resonate with anyone who’s received a terrifying diagnosis — and offers encouragement about how to move forward with power and purpose.

Most people who face cancer remember the exact day and time their diagnosis was confirmed. Their life is instantly divided in two: life “Before Cancer” and life “After Cancer.” They pine for the days Before Cancer when they took their health for granted, when they weren’t consumed by doctor’s appointments, needle sticks, and paperwork. I’ve had two of those dividing lines in my life: I was diagnosed in 1995 at age 37, and given three years to live, then diagnosed with breast cancer in 2022.

So what exactly do you do after you’ve gotten the earth-shattering news that so many of us fear?

After being diagnosed, it’s okay to mourn what you’ve lost. It’s important to do so. But it’s also important to acknowledge where you are, to accept that life has changed, and to begin thinking about where you want to be now, in six months, in a year or two. In this step, it’s time to take stock of what you need and what you want. And to fully understand how those needs and wants impact those you love.

It starts with your needs. They probably feel immediate to you now. What do you need just to get through the testing and the treatments? Time? Money? Family? Insurance? Employment? Who will drive you to appointments? How will you pay your deductible? Who will cover your shift at work? Who will watch your children or help your parents? Who will help maintain the household?

But more importantly, think about your wants. Don’t miss the opportunity you have now, right now, to sit quietly, by yourself, and write out what you want. Most people would not say that their diagnosis was “the best thing that ever happened to them.” But for many, a health crisis has a hidden benefit — it forces you to go deep within yourself to begin accepting your new reality and its implications on those you love. If you can “sit in it,” what’s important comes into clearer focus. What would a good day look like? Who are you spending it with? Is there something you still want to see? Something you still want to say or do?

I would venture to guess the majority of people don’t take themselves through a personal “reset” unless they are facing their own mortality. Why? The busyness of life, for one. But here’s the bigger reason: It takes tremendous discipline and personal honesty. You may have to accept that you didn’t yet accomplish what you wanted in your career. You may realize you worked too hard and don’t have strong relationships to lean on. You’re not alone. But now it’s time to ask yourself tough, sometimes insufferable questions about what matters most moving forward.

I started keeping a journal in 1995 when I was first diagnosed with cancer. I was writing to my daughter Nicole, but when I look back, I see in many ways I was also writing to myself. For me, the journal was a blank sheet of paper. A private place where I could gather and clarify my innermost thoughts.

Writing on a blank sheet of paper in the face of a problem would become a vital ritual throughout my journey, both to document what I needed to take care of and to shape how my priorities would be aligned. The writing took on a life of its own. Nothing had a more powerful influence over my thinking and my understanding about what I wanted — what my loved ones needed — in the wake of the diagnosis than my journaling. My entries articulated my deepest wants, informed my toughest decisions, and inspired me to move forward. I could rest once I’d done everything humanly possible to leave them in a good, safe, and happy place. Once we’ve created memories they could hold on to.

The want was much more than about me — it was about knowing the people I loved would be okay when I was gone. My mind could be at peace amid the unfairness of my circumstances. I did not want to be a burden on anyone, but living with an ambiguous death sentence placed me in a crucible of sorts — one that repeatedly compelled me to take risks and to keep asking what I wanted personally and emotionally.

What. Do. You. Want?

My dreams needed to be reimagined. And the clock was ticking.

To follow Kathy’s cancer journey and learn her insights on how coping with a diagnosis, read Fatal to Fearless, available here.