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. 💛

SHELF LIFE

For years, I volunteered at a food bank in Connecticut. My task was to sort through boxes of food donations and check expiration dates.

Not everything around us has a date stamped on it. The concept of expiration or perishing is an intrinsic part of life though. From the beautiful roses in the garden to the milk on the shelf in the fridge—and even medications and treatments—everything has a shelf life.

And that brings me to my latest news. My first line of treatment had an average progression-free effectiveness of twenty-four months. I was fortunate enough to get twenty-five months out of it. However, my latest scan confirmed what my liquid biopsy a month earlier had indicated: my cancer is on the move again, and the drug I was on is no longer effective.

Did this news come as a blow? Not really. This is what cancer advocacy and being active members of my treatment team have done for me and Jim. This takes me back to the moment when we decided to change care and hospitals over a year ago. With my last oncologist, her standard response in discussions, "I’ll tell you what to do and you do it" wasn’t acceptable. And I was getting tired of having to inform that medical team about the latest studies for treatment and testing.

Jim and I are aware of the path that metastatic breast cancer often follows. As a patient and advocate, I attend conferences—both in person and virtual. I keep myself informed about new drugs in the pipeline, advances in scientific research. Most valuable of all, I'm part of a support group with other patients who are undergoing the same exact treatment. This community of voices, stories, and suggestions is invaluable. Knowledge is power, and fear festers when you're facing the unknown.

My new treatment, which I started three days ago, has an average effectiveness of seven months. I hope to be one of those outliers and stay on it longer. But in the meantime, I'm not dwelling on the dates. Instead, I'm focusing on expanding my knowledge and increasing outreach to advocates, patients, scientists, and anyone newly diagnosed who suddenly has a million and one questions about what lies ahead.

Science aside, as humans, we’re not boxes and cans with dates stamped on our bodies. We are living, breathing, and feeling beings, and our well-being is deeply entwined with the love and support we receive in our lives. I've been extremely fortunate in that regard. Every day, I wake up feeling a profound sense of gratitude for the love that surrounds me.

I'm thankful to Jim, whose unwavering support has been my anchor; to my sons, whose strength and kindness inspire me; to my daughters-in-law, who have brought so much joy into our family; and to every one of you, my friends and extended family, for standing by me. Your encouragement, compassion, and presence are the lights that guide me. I cherish each moment we share, knowing that love is the most powerful medicine of all.

So, what’s next? A trip to London next July to meet readers and attend a book event. Jim and I are so excited to look forward and make plans. We’ll let the idea of shelf life be just that—a stamp on a box.

My love to you all!