The in between: Living with joy and grief

She wasn’t expecting news. The scan was supposed to be routine. 

Jessica’s heart dropped as she read the results, suggesting lesions in her spine and skull. 

She looked up at her husband. He could tell something was wrong. They gathered their things, ushered their children out, and left the restaurant without finishing their meal. 

“I just remember feeling like everything dropped out from under me,” she says. 

This wasn’t Jessica’s first experience with breast cancer. She had been diagnosed with early-stage disease at 39 in 2019, undergoing a bilateral mastectomy and radiation. In 2023, what appeared to be a local recurrence in her armpit was later found to be metastatic disease, which spread to her liver and chest lymph nodes. By 2024, further imaging revealed the disease spread to her skull, spine, sacrum, pelvis, clavicle, and rib. 

In the days that followed that dinner, Jessica had to make sense of what that moment meant — not just medically, but for her life as a mother, a partner, and someone who had thought she understood what the future might look like. 

Moments like this are part of life with metastatic breast cancer. The future can shift without warning, often in the middle of ordinary life. 

But what comes next is less often talked about. 

For many people with stage IV breast cancer, the question isn’t just how long they will live. It’s how they want to live with the time they have — how to hold fear and still find joy, how to plan for the future while staying present, and how to create meaning in the face of uncertainty. 

There’s no single way to do that. 

The process unfolds over time for those living with metastatic disease, through moments of fear, support from others, and difficult decisions about what matters most now and what they want to leave behind.

Life interrupted 

For Betty Sanchez, the beginning was marked by confusion and a sense that something felt very wrong. 

She noticed changes in her breast and sought care, but her concerns were initially dismissed. Providers believed she was affected by an insect bite. By the time she was diagnosed with metastatic inflammatory breast cancer, the disease had already spread to her bones. 

“When I first heard the news, it was like my ears shut down,” she says. “I couldn’t process what the doctor was telling me.” 

She was living alone in New Jersey at the time, divorced, with her grown children living across the country. She had to navigate medical appointments on her own. 

“I walked that episode alone,” she says, “not realizing that I probably should’ve had someone there with me to hear what was being said. When I was told it was metastatic, I just didn’t hear anything anymore.” 

Stacey Kirksey’s diagnosis followed a different path, but the emotional impact was just as immediate. 

In early 2020, she found lumps in her breast. Her care team initially believed the cancer was early stage. She underwent a double mastectomy during the first wave of the COVID-19 pandemic, expecting a clear treatment path. 

But additional scans, done before starting chemotherapy, revealed that the cancer had already spread to her liver. 

“I went from thinking, ‘OK, we caught this early,’ to realizing it was something completely different,” Stacey says. 

That shift, from a plan with a defined endpoint to something open-ended, was disorienting. 

The shock came all at once for Jessica, in real time, in that restaurant. 

“One minute, life felt doable,” Jessica says. “The next, it didn’t.” 

A way forward 

Moving forward after a metastatic diagnosis doesn’t happen all at once. 

Before her diagnosis, Betty worked as a healthcare research analyst, commuting from New Jersey to Philadelphia. She continued working through treatment, even while managing neuropathy and other side effects. 

“Metastatic breast cancer, especially when you’re doing well with treatment, can sometimes be an invisible disease,” she says. “Colleagues would say to me, ‘You don’t look sick.’” 

But keeping up that pace became increasingly difficult. Over time, the strain of balancing treatment with work began to take a toll, both physically and financially. Eventually, she stepped away from her job. This shift forced her to confront not only the realities of her diagnosis, but also the financial impact of living with metastatic disease in the long term. 

That experience, what many refer to as financial toxicity, became part of her understanding of what it means to live with stage IV breast cancer. 

Stacey found support through a mental health nurse practitioner and peer groups. 

“It helped me realize I wasn’t alone in this,” she says. 

Being able to speak openly with others who understood metastatic breast cancer gave her language for what she was experiencing and tools to move through it. 

>>> Read more about how palliative care can support you through serious illness.

Jessica turned to hypnotherapy and community support as she worked to manage the anxiety that came with so much uncertainty. 

Over time, her mindset began to shift from fear about the future to living in the present. 

“I’ve learned that I can hold both,” she says. “I can feel scared, and I can still find ways to live my life and be present with my family.” 

Living with intention 

The shift to live with intention after a stage IV diagnosis shows up in small, everyday decisions. 

Stacey’s change in mindset started with something simple. During treatment, whether she was in the hospital or resting at home, she would ask others to open the curtains. 

“I needed to see sunlight,” she says. “It reminded me there was still a world outside of what I was going through.” 

Her sons became part of that world in a new way. 

“They would literally come into my room, lie in bed with me, and watch movies,” she says. “We had so many special moments.” 

Over time, that mindset expanded. She began finding ways to mark her experience through time outdoors and through moments with her two sons, including matching tattoos. 

The tattoo is two words: Choose joy. The tattoo is written in Greek, a nod to her faith and the meaning she draws from it. 

This phrase is one Stacey returns to repeatedly, especially on the harder days, when fear and grief feel closer to the surface. 

“We are constantly grieving so many different things along the way,” she says. “And we have to figure out how to hold that along with the joy and all the good things.” 

Jessica’s version of living with intention often looks like spontaneity. 

“I’ll play hooky sometimes,” she says. “If it’s a nice day, I’ll go to the beach with my family.” 

Those moments aren’t planned far in advance. They’re chosen in real time based on what feels meaningful that day. 

Jessica says it’s also about presence. Being with her children. Paying attention. Not waiting for the “right time” to enjoy something. 

Betty’s shift led to a larger life change. 

In 2023, she moved from New Jersey to Dorado, Puerto Rico, where she could be closer to her mother and build a life that felt more supportive and grounded. 

It also changed how she makes decisions. 

“I started shutting down all the chaos,” she says. “I got to focus on me. I can’t focus on everyone anymore. I had to learn how to say no.” 

That might mean turning down commitments, resting when she needs to, or deciding where her energy goes.

Meaning and memories 

For many people living with metastatic breast cancer, the diagnosis brings questions about finding purpose and how they want to spend their days. 

Betty’s purpose is turning her experience into education and advocacy for others. 

Now living in Puerto Rico, she shares her story in community spaces, helping connect people with cancer with resources as well as advocating for better care. 

“I want people to have information,” she says. “I don’t want them to go through what I went through.” 

Jessica prioritizes both advocacy and something more personal. 

She organizes community walks to raise money for metastatic breast cancer research and shares her story publicly to support others navigating similar experiences. 

“Sharing my story or writing about it for various breast cancer organizations and telling it publicly on social media — it’s all a way I feel will not just help others but also keep a record of my journey, my voice, my face for my family,” she says. 

She also keeps a personal journal not just for herself, but also for her daughters. 

“There are times when it feels traumatizing and like I’m reliving the scariest parts of this experience over and over again,” she says. “But it’s also full of fun moments with my family, memories I want them to know that I cherish and that we created together.” 

Legacy is something Stacey is still working through. 

Though she has the tattoo that matches her sons’, Stacey has thought about creating letters or videos for her loved ones. But the process can feel overwhelming. 

“That aspect can be hard,” she says. “It makes it feel more real.” 

Stacey’s hesitation reflects something many people experience: wanting to prepare, while also not wanting to move too quickly into that space. 

For those who need help navigating this “in-between” space, death doulas are trained professionals who help people think through end-of-life planning. They can help with documenting wishes, starting difficult conversations, and exploring what purpose and legacy might look like in a way that feels manageable.  

>>> Learn more about this work in our Q&A with death doula Isabel Knight.