community

What's your story?

Ideas are always in the air. A piano has 88 keys — and yet from those 88 keys spring millions of combinations, millions of pieces of music, each one entirely its own. Writing is the same. The raw materials are finite. The stories are not.

The short story that first planted the seed of our collaborative writing life was born from standing witness to Hurricane Gloria battering the Newport coast — the wind, the chaos, the strange stillness that followed. The novel that launched our career grew out of Jim's doctoral dissertation. And every novel since has grown from a single moment of ‘what if?’ — an event, an occasion, a crack in ordinary life that let the light in.

This past week gave us a new kind of ‘what if?’.

We traveled east — first to Connecticut to visit family and Jim's mom who turns 100 this year, then south to Philadelphia for the Living Beyond Breast Cancer (LBBC) Annual Conference, one of the country's most powerful gatherings of patients, thrivers, survivors, caregivers, and advocates.

Walking among hundreds of people who are navigating the same disease — some newly diagnosed, some years into survivorship, some walking alongside someone they love — was humbling in a way that's hard to put into words. You felt the weight of every story in every room. And the courage.

I was honored to sit on a panel for ‘Tending the Inner Self, a writing workshop’, exploring how the creative act — journaling, storytelling, putting words to the unspeakable — can be part of healing. We talked about writing not as performance, but as witness. As a way of making meaning when life asks hard questions.

But what moved me most was something simpler. Throughout the conference, people kept being asked the same question — asked to pause, look up, and answer:

"What's your story?"

Not your diagnosis. Not your prognosis. Not your treatment timeline. Your story. What brought you here. What you carry. What you hope for. It's such a small question, and such a vast one.

It reminded me and Jim why we write. Every book we've made began because someone — or something — had a story that needed to be told. A storm. A dissertation. A grief. A joy too large for silence. The form changes. The impulse never does.

So we want to ask you — our readers, our community, the people who have walked with us through all these pages. Those living with the early stage and metastatic breast cancer, navigating treatment that doesn't end, finding meaning in the in-between. And those walking beside them — caregivers, family, friends who love someone through the hardest chapters:

What's your story?

We'd love to hear it. Hit reply and tell us — one line, one paragraph, or one page. What moment made you say, ‘what if?’  What event cracked your life open, or closed a chapter, or began one you didn't see coming?

Every great piece of fiction starts somewhere true. Maybe yours starts here.

Six Months on Xeloda — and Looking Ahead

This month marks six months on the oral chemo drug Xeloda.

Six months feels significant.

There have been side effects — the fatigue, the tender hands and feet, the quiet daily reminders that this is chemotherapy, even when it comes in pill form. But despite all of that, I am deeply grateful. Grateful that my body is tolerating it. Grateful that, so far, it’s doing its job. Grateful that I’m still able to live my life in the ways that matter most to me.

‘Tolerating’ may sound like a small word. In the metastatic world, it is everything. Tolerating treatment means time. It means stability. It means the ability to plan, something that once felt impossibly fragile.

And because I’m tolerating it, we are planning.

This coming week, I’ll be heading to the LBCA Conference in Philadelphia. I’ll be speaking on a panel, and Jim will be attending the caregiver sessions.

The LBCA conference is special in a way that’s nearly impossible to describe unless you’ve been there. It isn’t just a medical meeting. It’s a gathering of people who truly understand metastatic breast cancer. Patients, researchers, clinicians, advocates, caregivers are all in one room. It’s where science meets lived experience. Where research presentations are followed by hallway hugs. Where we talk about biomarkers and clinical trials and then sit down and talk about fear, resilience, and hope.

It’s also where I get to see people I deeply love and respect. Women and men in this community who are doing the hard, relentless work of pushing research forward. Advocating for better trials, better funding, better recognition of this disease, and better support for all of us living with metastatic cancer. Over the past four years, these people have become friends, mentors, and fellow travelers. Being in the same room with them reminds me that I am not walking this road alone. None of us are. We are not just surviving. We are thriving.

Then in September, Jim and I will head back to Mystic to volunteer with Little Pink Houses of Hope. We’ll reunite with old friends and meet new families attending the weeklong retreat. Families who, like us, know what it means to have cancer reshape everything. We are there to serve, to listen, and to offer something that medical appointments often can’t…unhurried, wholehearted, weeklong presence.

As someone living with this disease myself, I hope that matters. I hope it helps, even a little.

Volunteering has been part of our lives since my diagnosis. In many ways, it has been a lifeline — perhaps as much for me as for anyone we’ve served.

When I volunteer, something shifts. The focus moves outward. I step away, even briefly, from my own scans, my own labs, my own side effects. I get to sit with another cancer patient and simply listen. To be an ear. A steady presence. A quiet reassurance that they are seen.

Sometimes what people need most is not advice but understanding. A nod that says, ‘yes, I know that fear’. Or, ‘yes, I’ve walked through that too’.

Volunteering reminds me that even in the middle of uncertainty, we still have something to give. Compassion. Experience. Time. Love.

I’m here. I’m tolerating. I’m working. I’m volunteering. I’m living.

And for today, that is enough. 💛

Nikoo's New Interview - October 2025

In this interview I’m sharing something deeply personal—my cancer journey.

It hasn’t been easy. There have been dark days, times of uncertainty, moments of fear… but also sparks of hope, resilience, and immense gratitude for every single one of you who’s walked this path with me.

In this video, I open up about what I’ve been through. The struggles, the breakthroughs, and the lessons I’ve learned along the way. My hope is that by being vulnerable, I can help others feel less alone.

If you or someone you love is facing something similar, this is for you. You are stronger than you think. You are not alone.

Thank you to everyone who’s sent love, prayers, messages, and encouragement. You lift me up every single day.

Please feel free to watch, share, and comment. Your support means the world.

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)

Empathy

Volunteering and giving back more than one receives—these values were instilled in me from early childhood. I grew up in a household with two working parents, and my two grandmothers were my primary caregivers. Each of these remarkable women exuded goodness. Charity wasn’t something they did; it was part of who they were.

Later, marrying Jim—who, as many of you who’ve met him know, has the most generous heart and is a giver through and through—deepened these values and shaped our way of life together.

Fast forward to today, as Jim and I navigate this road called metastatic disease. Early on, I was fortunate to find a community of extraordinary people. I listened, I learned, and I worked hard to find my niche—a way to live out the principle that has always guided me: give back.

Now, three years post-diagnosis, some call me a mentor, others an advocate. In truth, I’m simply a friend. A person who cares. Someone trying every day to share what I’ve learned, what I practice, and—above all—the message of hope with my sisters.

Just yesterday, I was on the phone with a friend walking the same path. She faces the same challenges and wrestles with many of the struggles I’ve encountered. My message to her (and to many of you who’ve heard me say it countless times) was simple: Control what you can.

Today, as I begin a Phase 1 clinical trial—side effects yet unknown to me and 890 others around the world who are helping to forge new ground—I’m thinking of all my sisters, brothers, and friends who are cheering me on.

 Thank you for the texts, the calls, and the messages. In short, for your warm, continuing empathy.

You are there for me, and I feel your support in my heart.

Spring Changes

Our Granddaughter Ammara’s Love Art

Life has been a whirlwind this past month, centered primarily around our upcoming move. Not by choice! Although the new place is just five miles away, the task of packing up hundreds upon hundreds of books, along with the rest of our household, has been quite a challenge. The silver lining? Our new house is filled with light and has a fantastic workspace and is conveniently closer to the beach. Once we're settled in, brace yourselves! The creative juices are flowing, and we're brimming with book ideas.

On the cancer front, today I had a meeting with my brilliant oncologist to review recent results and discuss our next steps. Throughout this journey, scans have consistently failed me, from missing my initial breast cancer years ago to the ongoing struggle to detect my lobular cancer through PET scans, CT scans, and MRIs. However, one test has remained reliable for me: CtDNA. This morning, the latest results revealed a doubling in my cancer's tumor mutational burden since the last test. What does this mean? It's time to switch up my chemotherapy, as the current treatment is no longer effective. Therefore, the plan is to potentially make a change following my seventh stent replacement surgery in June.

Jim and I want to express our deepest gratitude to each and every one of you who has been checking in on us and seeking updates on this journey with cancer. Your unwavering support means the world to us, and we are particularly grateful for those who have been a constant source of strength and companionship…and support us by buying our books and spreading the word about our work. The financial toxicity of cancer is real, and I still have to buy health insurance and pay the premiums in the open market place.

We cherish each of you dearly and cannot emphasize enough how much your love and support mean to us through these challenging times.

Hi Dear Friend,

October is Breast Cancer Awareness Month. This year’s theme, No one should face breast cancer alone, serves as a reminder for providers and patients to consider the many ways that we can partner in the prevention, detection, and treatment of breast cancer.

In keeping with that theme, I (Nikoo) attended the International Invasive Lobular Breast Cancer conference in Pittsburgh a couple of weeks ago, where I served on a panel and had the opportunity to share my story with leading cancer doctors and researchers from all over the world. Coming home armed with a great deal of knowledge, I'm tremendously energized to help and be an advocate for other patients. And I find myself in a better place to deal with the challenges of my own metastatic breast cancer.

Many of our friends ask me the names of good places to donate during October. One thing you should know before you donate. Out of all the funds that are raised for breast cancer organizations, less than 7% actually goes toward research. So please, if you decide to donate, support research. To help, CLICK HERE FOR A LIST of reliable organizations that your money can help to make a difference.

Advocate for Yourself and Others

My Invasive Lobular Cancer (ILC) story started in 2003 when my general practitioner noticed a hard tissue in my right breast during my annual exam. I had just gone through a clear mammogram the week before. At the time we were living in Connecticut, and an ultrasound and a biopsy identified the tumor as 0.9 cm lobular breast cancer. I went through a lumpectomy and radiation and five years of tamoxifen, and all the stats I was given ran along the lines that they found the cancer early, and I was cured.

Fast forward to earlier this year. Nineteen years later. Out of nowhere, I developed food sensitivity…

Click Here to Read More at the Lobular Breast Cancer Alliance…

Community and Gratitude

Jim and I have known each other since I was nineteen and he was twenty-three. We came from the opposite ends of the world, and the universe brought us together. Perhaps it was fated...because we were two halves of the same whole, souls united, hearts entwined, both of us storytellers at heart. Or maybe we met and fell in love because we had the same outlook on life and community and who we were and what responsibility we had, not only to ourselves and family, but the community around us. I know I am getting philosophical here. Yes, there were physical attractions too. ;-)

Through the years, we’ve moved many times, lived many places. Each time, it didn’t take months but days before we became part of the community. This post isn’t a list of everything we did and didn’t do. It’s not about our record of volunteering. It’s about how the people we’ve met have influenced our lives. Here is a couple of them:  

·      A volunteer hospice visit in Goshen, Connecticut. An elderly woman, confined in a wheelchair and living alone, surrounded with piles of dirty dishes and laundry, asking me not to bother with that stuff, but “Sit with me. Hold my hand and talk to me.” She wanted me to see her and be company with her, as no one saw her anymore.  

·      Stonington, Connecticut. Our elderly landlord telling us (when we were two young newlyweds): “Every day, give more than you get.”

Yesterday, you our friends, saw the two of us. You gave more to us than it’s ever possible for us to give. You are lifting our spirits and warming our hearts and making us feel loved. We’re grateful. We’re humbled.

We’re also stronger and ready to fight harder because of you. 

Thank you. And we love you.

A friend has been kind enough to set up a GoFundMe fundraiser.

Here is the link to that page.

Thank you!

A Definite Diagnosis and a Plan...

June 29, 2022

Finally…

Four months of tests and I now have a diagnosis.

Metastatic lobular breast cancer with metastasis to peritoneum, ascites, and possibly bone cancer.

Is it tough to hear this? Yes.

It means that the breast cancer that I fought nineteen years ago was not defeated, just pushed back. It has been lurking, slowly growing, and waiting for a moment to resurface elsewhere in my body. The cancer cells that are sprinkled throughout my abdomen are EXACTLY the same breast cancer cells.

My reaction? All the things cancer can NOT DO. The words out of the oncologist’s mouth were clear and POSITIVE: ”This is serious. But although it’s not curable, it’s treatable.”

So, it begins. I have already started one medication. Another starts in a couple of weeks, once I recover from the surgery. As I mentioned earlier, I now have a chemo port in my chest that they’ll use to draw blood for tests. No poking me with a needle every two weeks.

This treatment should work to slow the growth and spread of the cancer for 2-5 years, before it develops a resistance. Then, we go from there. Who can tell what new treatments will be available then?

I couldn’t get to this point, this state of mind, without you my friends. Please, keep all the prayers and positivity coming, and please remember all the things cancer CANNOT do.

Love you.

And thank you to the person who posted online the image we’ve borrowed and inserted here. Much love to you.

 

We’ve been resisting this, but some of our friends have been pressing us to let them help. Medical costs are gradually mounting, so…if you care to make a donation, our PayPal address is

NikooandJim@gmail.com