Why Grief Lingers

Exploring the profound connection between enduring love, heartbreak, and hope for a cure in inflammatory breast cancer.

The messages often start the same way:

“I can’t believe this has happened. We thought she had more time.”

“How did this happen to her?”

“Why us? This is so unfair.”

“She had three young children she wanted to raise.”

These questions are nearly impossible to answer. When someone is deep in grief, there are no words that make sense of something so senseless. No parent should ever have to bury their adult child. And yet, I have spoken with far too many families living the unthinkable reality of losing a daughter, wife, sister, or friend to inflammatory breast cancer.

Sometimes the decline happens slowly, and there is a quiet, reluctant recognition of where things are going. Other times it happens so quickly that the mind can’t keep up, and hope becomes a shield—sometimes soft, sometimes stubborn—that blocks the truth because the truth is simply too heavy to bear. In either case, the heart is never ready.

I know something about those nights after the visitors go home —the silence in the house, the private conversations, the shock that settles like thick fog. My own mother died suddenly in a car accident when I was nine. She was only twenty-four. I remember my stepfather and grandparents in their stunned disbelief. One moment she was here, and the next she was gone. There was no time for preparation, no slow adjustment, no final conversation.

On the nights when I learn that one of our IBC sisters has passed, I often cannot sleep. My mind goes back to that night in my childhood—the raw pain, the disbelief, the desperate hope that this is just a nightmare you’ll wake up from any minute. But it isn’t a nightmare. It becomes the new reality; one you never wanted.

Even with the hope surrounding research, inflammatory breast cancer remains an aggressive and often fatal disease. I use the word fatal carefully, because it can sound like there’s no point in fighting—but that isn’t true. I was diagnosed myself, and here I am, eighteen years later. Many others are living long, full lives years beyond their diagnosis.

That hope isn’t abstract. It’s built on real progress:

• Timely detection: Improved imaging and awareness help identify IBC as soon as possible, before it spreads widely.

• Targeted therapies: New treatments attack the biological drivers of IBC.

• Research on tumor microenvironment: Scientists are learning why this disease spreads so quickly—and how to stop it.

• Immunotherapy combinations: Clinical trials are showing promise for patients who previously had limited options.

• Focused clinical trials: More studies are now devoted specifically to IBC, something almost unheard of twenty years ago.

This isn’t wishful thinking. It’s momentum. It’s scientists refusing to let this disease stay in the shadows.

But when grieving families reach out—the parents, the husbands, the teenage children—I know that research updates cannot touch the pain they are in right now. They want to know “why,” “how,” and “why her.” They want to understand why the world suddenly tilted off its axis.

I try to meet them wherever they are. Some find comfort in faith and the idea of reunion. Some feel betrayed by the “manifest it” style of spirituality they were taught. Others believe this life is all we get. Wherever they stand, I do not dismiss their pain; I sit with them in it.

I tell them that grief has its own timeline, and that they will never stop loving the person they lost. Grief is difficult for many reasons, but the deepest one is this: love never dies. The pain lingers because the love remains. Over time, the raw edge softens. The pain becomes something you learn to carry differently. It won’t be easy, but it won’t always feel as sharp as it does in the beginning.

One thing I always try to do is speak the person’s name. A secondary grief often sets in when friends and family stop mentioning the person who died, as if silence is a way to protect the grieving. But silence feels like erasure. The person is never far from your thoughts, and hearing their name spoken aloud is a small balm, a recognition that their life mattered —and still matters.

I think about the holidays and the empty seats at family tables. Every milestone, every celebration, every gathering becomes a reminder of who is missing. That grief is real, and it can reopen with each new event.

And yet, this is why, eighteen years after my diagnosis, I continue this work. This is why I talk about inflammatory breast cancer, why I ask people to share their stories, why I ask for donations, why I push this disease forward into the light. Because there is hope. Science is advancing. Doctors and researchers are relentless in their pursuit of better treatments. And while we cannot save everyone yet, we are saving more lives than before.

It does not replace the empty chair this year. Nothing can. But perhaps in the future—maybe in her grandchildren’s future—these questions of “why” will no longer have to be asked. Because we will have found a way to stop this disease for good.

And perhaps that is the deepest form of comfort we can offer in the face of grief: the commitment to ensure it never happens again.