I’m writing this for anyone facing a cancer that doesn’t have a finish line — to share what it means to stop measuring life against who you used to be and start learning how to live well now. Because while cancer will complicate life, there’s still room for joy, purpose, and a life filled with meaning, connection, and moments that matter.
If that’s you — newly diagnosed, in treatment, or navigating any chapter of your lifelong cancer journey — here’s a bit of my story about how I’m choosing to live.
After six months of unexplained pain, starting with lower back soreness, then sharp rib pain blamed on “tennis strains,” I knew something wasn’t right when my back gave out just from standing. That’s when I saw a spine specialist. She raised a red flag and ordered more tests. Two months and many tests later, I finally had a diagnosis: high-risk kappa light chain multiple myeloma (LCMM). I was 56.
As a former competitive athlete and nonprofit professional who spent years raising funds for cancer organizations like ACS, Blood Cancer United, and the Pancreatic Cancer Action Network, I never expected to become a patient, especially not with an incurable cancer. But in October 2023, life hit the brakes, and I joined the 35,000+ people diagnosed with multiple myeloma each year in the U.S.
Treatment started quickly: induction therapy (D-VRd) and radiation for lytic lesions in my spine and ribs. I tried to maintain a sense of normalcy, working full time while learning the ins and outs of this cancer, juggling a packed schedule of appointments, side effects, and everything in between. It wasn’t easy, but I thought I could chart a path forward, get through this first line of treatment, and hopefully enjoy a stretch of remission. But my cancer had other plans. Just before New Year’s Eve, a quick ER visit turned into a two-week ICU stay with a lung infection, sepsis, and respiratory failure. Intubated and in a medically induced coma, the experience was terrifying for my family. Waking up was disorienting. I had no memory of what had happened, and I quickly realized that my body was no longer the same. I also learned the harsh truth of what it means to be immunocompromised.
By June 2024, I was in partial remission. I started to breathe again. Hope returned — briefly. Unfortunately, my clever and stubborn myeloma cells regrouped within two months, and we were back to square one. The relapse felt like being sucker-punched. I had just begun to imagine a future again, and suddenly I was back in the unknown, staring down my own mortality with fresh fear.
What got me through wasn’t just medicine, it was people. My husband’s steadiness. Friends who showed up with food, fuzzy socks, and inappropriate memes. Texts from former colleagues reminding me I wasn’t forgotten. I found strength in the smallest kindnesses, in faith I didn’t always understand, and in the quiet voice inside me that kept whispering: not yet, not done.
We had been discussing a stem cell transplant, but given the aggressive nature of my disease, I asked about CAR-T therapy. That’s when Carvykti® entered the picture, a newly approved CAR-T therapy for patients like me. On December 16, 2024, I received an infusion of my genetically engineered, superhero-level T-cells (basically, microscopic avengers trained to hunt down rogue cells). The journey to get there is a story in itself, but the result? MRD-negative. Complete remission. And for now (fingers crossed), it’s holding.
I know my journey is still in its early chapters compared to many others, but whether you're newly diagnosed or navigating your seventh line of treatment, living with an incurable cancer like myeloma reshapes everything. It’s not just your body that changes; it’s your identity, your relationships, your sense of control. For me, one of the hardest parts wasn’t the treatment itself (though that’s no walk in the park), but feeling like pieces of my identity — personally and professionally — were slipping away.
At first, my world revolved entirely around cancer: appointments, side effects, test results, and constant worry about the future. My calendar and my thoughts were full of cancer. While I knew that intense focus was necessary to get the disease under control, I also started to feel like I had vanished beneath the weight of it all. At some point, I realized I didn’t want cancer to be the main character in my life. I wanted my treatment to support my life, not define it.
The shift didn’t happen overnight. It began with questions I couldn’t ignore: What matters to me now? How do I want to live, knowing my time may be limited? I didn’t want to just survive; I wanted to feel like myself again, or at least someone I could recognize. That meant grieving what was lost and daring to hope that something new could be built. I began reevaluating everything: the shape of my days, the pace of my life, and the expectations I was still carrying from my pre-cancer life. With the support of a life coach, I began to reflect on the shift from who I was to who I’m becoming. I knew multiple myeloma would be part of my story for the rest of my life, so I asked myself, “How can I live fully with this treatable but not curable cancer?”
I stopped trying to squeeze my old life into this new reality and started creating space for what mattered most. I gave myself permission to slow down, to say no without guilt, and to protect the parts of life that bring me peace, connection, and meaning. I let go of the pressure to keep performing at full speed and began focusing on what felt real, restorative, and joyful. It wasn’t about chasing happiness; it was about noticing it, even in small, quiet moments. I began putting more energy into being present, not constantly bracing for what’s next but learning how to find joy in what’s now. This journey helped me shape a new compass to stay true to what matters.
Living a Life Aligned with Joy, Identity, and Meaning
• Health supports my life but doesn’t define it: Treatment is a tool for living, not my identity. I’ll give it the attention it needs, but it doesn’t get to be the main character.
• Protect my energy for what nourishes me: Energy is finite. I’ll spend it wisely on people, activities, and experiences that help me feel most alive.
• Movement is a gift, not a task: Whether it’s walking, pool aerobics, or stretching, I celebrate what my body can do today.
• Connection fuels my spirit: Quality time with my husband and close friends isn’t extra; it’s essential.
• Choose curiosity and creativity: Reading, journaling, and learning keep me connected. They’re not indulgences; they’re lifelines.
• Live in the present, not the prognosis: I can’t predict the future, but I can live fully today. I won’t postpone joy waiting to feel “better.” I choose to live while I can.
• Joy is not a distraction — it’s a direction: I give myself permission to seek and savor joy. It’s how I continue to live meaningfully and fully.
Having an incurable cancer like multiple myeloma is life-changing. I may never return to the same career path I once thrived in. And I’ve had to say goodbye to tennis, a sport I’ve loved since I was four. But I’m discovering new ways to move, new ways to serve, and new ways to feel alive. These days, I wake up knowing life won’t return to what it once was, and that’s okay. I’ve let go of perfection in favor of presence and choose, even on the hardest days, to focus on living rather than simply surviving. I carry scars, fears, and uncertainty, but I also carry strength, clarity, courage, and a commitment to live with intention. My life looks different now, and it will continue to change, but it’s still mine. And as long as I am here, I’ll keep shaping it with meaning, movement, connection, and moments that matter. This is the life I’m still living — fully, honestly, and on my terms. And I’m not done yet.
“I move forward with open eyes and a steady heart — rising, real, and resilient.”
Lisa
light chain multiple myeloma (LCMM)
