breast cancer

A Quiet Thank-You, a Noisy Keyboard, and a Year of Stories

Hello dear friends—

As the year winds down and the nights crowd out the days, we wanted to pause and say thank you—for welcoming our stories into your lives, onto nightstands, e-readers, commutes, and those precious quiet moments you claim as your own.

Writing is supposed to be solitary… though in our house it rarely is. Our desks back up to each other, Jim crunches loudly on cookies, and Nikoo has full conversations with herself while writing. Somehow, amid the noise and life's commotion, the stories get written—and knowing they find their way to you is what makes it all worthwhile.

Every morning, we get up and focus on the day in front of us, on gratitude, and on the small, good moments…even though this year has asked a lot of us. I'm now in my third year of my cancer journey, and the past year brought a few hard turns. Still, we want to tell you that your kindness and support—your notes, prayers, and encouragement—have carried us more than you know.

 Stories mattered differently this year. They comforted, distracted, and reminded us we weren't alone. Knowing our books have been part of your year is a gift we hold close.

 If you ever feel like sharing one of our books with a friend, a book club, or a library—thank you. That kind of word-of-mouth is quiet magic. And if you'd like to support us directly (and browse some good reading), our bookstore is always the best place to do it.

Mostly, please know this: you matter to us—not as customers, but as fellow lovers of story.

From our family to yours, we wish you a peaceful Christmas, a warm and joyful holiday season in all the ways you celebrate, and a hopeful New Year filled with good health.

One more thing…as always, we'd love to hear from you—what did you read this year that stayed with you, or what kind of story are you craving next, and what are your plans for this Holiday Season?

Warmly,

Nikoo & Jim

October: Pink Everywhere, But Pain for Many

This past Friday, I sat down for an interview with The Patient Story (the final video will be available October 10th). One of the questions the interviewer asked me was simple — but it cracked me wide open: Where does your support come from?

I tried to answer, but the truth hit so hard I broke down. (Hopefully, some of my crying jag will be edited out.) Still, what I shared was raw and honest.

Outside of my immediate family—Jim, my sons, and my amazing daughters-in-law—my greatest support comes from my MBC family. My sisters and brothers who walk this same unrelenting path. The ones who check in on me, whom I check in on. The ones whose voices and messages carry me through the darkest nights.

It’s the love we pour into each other that sustains me. A love born not of choice, but of necessity. A love rooted in shared pain, in knowing that our time is both precious and uncertain. This community is where I find strength, where I find understanding without words, where I am reminded that even in the face of Stage IV cancer, we are never truly alone.

Pink October, But Not for Everyone

Each year, October rolls in with pink ribbons on mailboxes, pink cupcakes at fundraisers, pink t-shirts flooding social media. At first glance, it feels hopeful. A month of awareness, of solidarity, of a message of ‘we’re fighting together.’

But for those of us living with metastatic breast cancer, October pink can be a trigger. Every billboard, every ‘Save the Boobies’ campaign, every cheerful pink post reminds us of what pink doesn’t say: that our disease has marched past early detection, that our story is more complex than slogans.

We don’t just want awareness. We need change. We need research for metastatic disease, for lobular cancer, for the patients too often left out of the picture.

The Hard Truth

Breast cancer is often survivable in many cases, thanks to decades of research, early screening, and targeted therapies.

But for metastatic breast cancer (Stage IV), the picture is starkly different:
The five-year relative survival rate for metastasized breast cancer is only about 32%.

That statistic is not just a number. It’s my reality. It’s the reality of my friends. It’s the shadow we live with every day.

Why We Push, Every Day

  • Because “awareness” without action is hollow. Pink ribbons are not enough. We need more clinical trials, more funding for metastatic disease, more innovation for cancers that still don’t have good therapies. (In my own case, we need more clinical trials for invasive lobular breast cancer, for which there are less than a handful.)

  • Because stories matter. Every time people say, “early detection saves lives,” they forget that early detection doesn’t save every life.

  • Because hope must be real. We don’t need cheerleading. We need honesty, transparency, and investment in research that gives us more time and better quality of life.

  • Because life is more than “cure or die.” Many of us live years with Stage IV, balancing treatments, side effects, and meaning. We deserve dignity, support, and compassion until better treatments are found.

  • Because voices matter. We need you to ask the right questions, to stand with us, to be advocates for research, for trials, for real progress.

What You Can Do

Good work is being done. Real organizations are pushing for change and funding research. If you are donating, please consider giving to those that specifically support metastatic breast cancer research.

Your support makes a difference. Not in pink T-shirts or slogans — but in labs, in clinical trials, in real treatments that extend and improve lives.

Be a voice for change. Support us. Speak for us. Stand with us.

Because we don’t need more pink.

We need more progress.

These are some of the organizations our own money is going to this month: Please list yours in the comments.

  • LBCA (Lobular Breast Cancer Alliance)

  • METAvivor

  • Breast Cancer Research Foundation (BCRF)

  • Living Beyond Breast Cancer (LBBC)

Tagged: Cancer journey, cancer support, community, Breast Cancer Month, MBC, metastatic breast cancer, Pinktober

Taking Steps — Empower, Educate, Advocate…

Fifteen months have passed since my life took an unexpected turn with a diagnosis of metastatic breast cancer. Since then, anytime there is silence on our social media accounts, I get private messages asking, ‘How are you doing?’ And it warms my heart to know that you're with me on this journey.

My weeks are a symphony of scans and appointments, a continuous rhythm that has become my new normal. And yes, I will always be on one or another type of chemo. And no, I won’t be done with it. Ever. When it comes to discomfort, I have pain. I’ll always have some pain, but I can live with it.

To those friends and family who have followed my journey through this blog, you remember the challenging six months leading to my diagnosis. The confusion, the fear—those emotions were all too real. And the emotional toll that followed was profound. The statistics were terrifying.

“Only one-third of women diagnosed with metastatic breast cancer in the U.S. live for 5 years after diagnosis.”

I needed some space to get comfortable with my diagnosis. I needed time to find my strength and search for a purpose for the time I have left. Yes, writing is our profession. It pays the bills, so that had to continue. But there were deeper questions that kept me up at night.

What more can I do with the time I've been given?

How can I help people who are going through the often scary stages of diagnosis?

How can I support others living with MBC, now and in the future?

Jim and I have always believed in the power of giving back. Early in our marriage, our wise landlord, Tom Kepple, shared a lesson that stayed with us: "Always give more than you take." In a way, his words were an echo of Martin Luther King, Jr.: "Life's most persistent and urgent question is, what are you doing for others?"

With those words as our guide, Jim and I decided to dedicate our time and energy to advocacy. I found my calling in patient advocacy, while Jim is getting involved with caregiver advocacy.

Advocacy starts with each of us, as individuals, speaking up. It's when the appointment schedules don't align with our lives, when medications bring debilitating side effects, when second and third opinions are essential. And later, it’s when we share our experiences, offering empathy and practical insights.

Breast cancer is a multifaceted challenge, and my focus is on helping patients ask questions and finding resources. I decided early on to share my journey, and hopefully, to inspire others in embracing life fully.

The realm of advocacy is vast and unending, but I'm committed to immersing myself in it, learning, and being a voice for change. As I prepare to attend my first in-person medical conference as a patient advocate, I'm mindful that there are no long-term guarantees for MBC patients like me. However, I refuse to let statistics define my path. I am a unique statistic, ready to empower, educate, advocate…and live.