It’s a lot

A quote, often attributed to the motivational speaker and author Trent Shelton, was posted in a Facebook support group the other day that hit my heart — “Trying to heal while trying to grieve while trying to forgive while trying to forget while trying to love while trying to be loved; that is a lot. For one heart to handle alone.” And yet, so many of us try. We walk around carrying invisible suitcases packed with old hurts and fresh disappointments, with unanswered questions and unspoken fears. We carry memories we wish we could forget and people we wish we could forgive.

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Remembering Dr. Jill Tirabassi

There are some deaths that feel particularly cruel, not because death is ever fair. It isn’t. At the same time, sometimes the person who dies has spent her life trying to understand exactly how to keep people alive. Dr. Jill Tirabassi was one of those people. Jill was a physician in Buffalo, New York. She was a researcher, an educator, an advocate, a wife, a mother, an athlete, a gardener, a hiker and so much more. She was forty years old when she died on September 7, 2026. Forty. There is something almost impossible about writing that number.

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“You’re so strong”

Strength is one of the most misunderstood words in the English language. People say it like it means invincibility. Like strength is the absence of collapse. Like strong women are carved from marble instead of flesh. Like they wake each morning with steady hands and unwavering certainty, moving through grief and exhaustion with glossy hair and gritted teeth and perfectly composed smiles, but that has never been true. Strong women stumble. They miscalculate. They unravel at red lights. They forget appointments and lose tempers and cry in parking lots because one more thing feels like one too many.

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Getting lost in a good book

There are days when the world feels too heavy to carry. Days when the weight of terminal cancer sits on my chest before my feet even touch the floor. Days when the scanxiety hums in the background like an appliance that never shuts off. Days when my body feels unreliable and my future feels uncertain and every thought somehow circles back to disease. Those are the days I reach for a book (well, in reality, those are the days I long for a book but reaching for one is a daily occurrence), Not because I am trying to escape reality.

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The Weight of Certain Words

There are words that simply don’t sound like the others. Bone-only. Indolent disease. Partial response, complete response. Tumor markers, ctDNA. For months and years I learned the language of Stage IV Metastatic Breast Cancer (MBC). I learned to hear “stable” without believing it meant safe. I learned to celebrate “minimal progression” as though it were a really good thing. I learned that MBC is measured differently, that victories are often just longer pauses between storms. Bone metastases became something I could almost carry. Not lightly, never lightly, but with familiarity. Bone disease often grants something precious in this world: time.

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The Shape of Fear

I used to think that if I could just get through the thing I was afraid of, I would be less afraid. That there would be some point at which I would arrive on the other side of cancer and discover that I had learned the lesson, passed the test, earned some measure of peace. But that was naïve. There is truly no other side of fear in terminal cancer, there is only the next thing. And the strange thing is that the next thing, almost without exception, arrives looking impossible.

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Health insurer CEO: ‘Make prior authorization illegal’

Health insurer CEO make prior authorization illegal to reduce denials and appeals, addressing inefficiencies in Medicare Advantage and Medicaid plans.

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Embracing Second Chances: Lessons from Terminal Illness

Terminal illness has taught me many things. It has taught me that life is fragile, that certainty is mostly an illusion, and that control is a story we tell ourselves to help us sleep at night. But perhaps the most surprising lesson has been this: Every day is a second chance. Not once in a lifetime. Not after some dramatic turning point. Not after a near-death experience or a profound revelation. Every single day. Every morning we wake up, still breathing, still here, still gifted another sunrise, another cup of coffee, another conversation, another opportunity to choose differently than we chose yesterday.

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The Places We Didn’t Expect

There is a particular kind of whiplash that happens when you have been living with Stage IV Metastatic Breast Cancer (MBC) long enough to become almost fluent in progression. You know the vocabulary. You know what the scans mean before the doctor finishes explaining them. You know which words are reassuring and which ones make everyone in the room sit a little straighter or when a "new" specialist joins the conversation unexpectedly. You know how to read the difference between “stable” and “no significant interval change,” and you know that “suspicious for” is medical-speak for…

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Gratitude for the People Who Stay

There are people who change your life in dramatic ways and then there are the people who change your life quietly: the ones who never make headlines. The ones who don’t arrive with trumpets or grand speeches. The ones who simply show up, over and over again, until their presence becomes woven into the fabric of your story. Lately, I’ve been thinking about those people. Maybe it’s because cancer has a way of stripping life down to its essentials. Maybe it’s because when you’ve lived long enough in the land of uncertainty, you begin to see more clearly what actually matters.

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Denial and the danger of leading others

There is a particular kind of comfort in denial and I understand why people reach for it when living with a terminal/incurable disease like Stage IV Metastatic Breast Cancer (MBC). When someone tells you that you have MBC, that the disease has escaped the boundaries where medicine can be confident, that it has settled into your bones or liver or lungs or brain and intends to stay, denial can feel less like a flaw and more like a life raft. The truth is heavy; the truth is frightening. The truth wakes you at three in the morning and sits beside your bed like an unwelcome guest, so I understand the temptation to look away.

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Navigating Visibility and Virtue in Cancer Advocacy

Disclaimer: These reflections are not about any one specific person or situation. They are simply personal musings on visibility, advocacy, volunteerism, and the varied motivations that can emerge within the world of cancer and illness. There is a peculiar gravity around terminal illness that draws people toward visibility. Cancer, especially, rearranges not only the body but the social landscape around a person. Some become louder. Some become quieter. Some feel compelled to document every infusion, every ribbon, every trembling revelation to keep everyone informed. Others disappear into the folds of ordinary life, carrying impossible burdens silently while still answering texts from frightened strangers at midnight.

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The Picture We Didn’t Expect

We came to Washington, D.C., this summer carrying the same hopes as thousands of other families. We wanted our boys to stand where history happened instead of simply reading about it. We wanted them to crane their necks beneath the Capitol dome, to walk the National Mall until their feet hurt, to understand that the Constitution isn’t just parchment under glass but an invitation to become the kind of people who keep it alive. We wanted them to see America the way we see it, not as a headline or as a political argument, but as an idea worth wrestling with.

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Exploring the Hidden Costs of Waiting for Medical Appointments

There is a room for waiting in every doctor's office. White walls. Beige chairs. Climate control that never quite matches the temperature of a human body. As if life itself is on hold and we are just buffering. There is a sign (and sometimes text messages and emails and calls). Arrive fifteen minutes early. As if time is valued equally between patient and doctor, but it isn't. Not here, not really. We arrive early like good, compliant patients do. Like people whose survival has been quietly tied to punctuality. We arrive early because arrival is not optional when your body is already being scheduled cell by cell.

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MBC Is Not a Journey

Disclaimer: This post reflects my personal perspective. Every person living with Stage IV Metastatic Breast Cancer (MBC) has the right to describe their experience in whatever way feels authentic to them. My concern isn’t with the language people with MBC choose for themselves, it’s with those who haven’t lived this reality using words like “journey” and assuming that we’re all the same. This post is meant to encourage more thoughtful language, not to criticize or police anyone living with MBC. There is a word that follows MBC patients everywhere we go.

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Cancer Muggles

If you’ve never lived with Stage IV Metastatic Breast Cancer (MBC), congratulations. Really. I hope you never earn membership in this club, but that also means you’re probably an MBC muggle (just a little more specific than a general cancer muggle). Now before you get offended, let me explain. The term “muggle,” borrowed from Harry Potter, simply means someone outside the magical world. They aren’t bad people. They’re just, uninitiated. They don’t speak the language. They don’t recognize the customs. They don’t know the rules because no one ever handed them the map.

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Musings on the Infusion Room

I remember thinking the infusion room would feel like a place where you simply received medicine. Clinical.Orderly.Temporary. Instead, it feels like crossing a border into another country—one with its own language, its own customs, its own understanding of time. The first morning I walked into an infusion room back in 2017, I thought I was prepared: I had packed the blanket that smelled faintly of home. My iPad. A book I never opened. Snacks that sounded appealing when I packed them but impossible once the medications started dripping into my veins.

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“Pretty Girl Cancer”

DISCLAIMER/BACKGROUND: This post was inspired by someone in a support group who shared about her struggle with the focus on beauty for women with breast cancer of all stages and how dismissive it feels. We share the same perspective and the words below are my take on the subject and with permission. This post is focused on what healthy people do/say and not on MBC patients who include appearance as part of their coping. Each person with MBC has the freedom to do MBC in whatever way they desire. There is something profoundly strange about the way society talks to people with breast cancer overall and especially Stage IV Metastatic Breast Cancer (MBC).

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Why I Continue to Advocate

People ask me sometimes why I stay so connected to the Stage IV Metastatic Breast Cancer (MBC) Community; why I continue to do the work of advocacy amidst my own struggles. I never really know how to answer that question clearly because the answer feels stitched into me so tightly that it no longer feels separate from who I am. It would be like asking why rivers move toward the ocean or why sunflowers turn themselves toward light, something obvious and instinctive. Some things stop being decisions after enough years. They become reflex.

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Don’t Disappear

People often ask what they should say to someone with cancer, especially since I've written quite a bit about what not to say. The ones who ask say they’re afraid they’ll say the wrong thing. Afraid they’ll make us cry. Afraid they’ll remind us of something we’re desperately trying to forget. The truth is almost painfully simple: it’s rarely about finding the perfect words, it’s about refusing to disappear. Cancer is a long illness and its consequences remain far after treatment is "done". Stage IV Metastatic Breast Cancer (MBC) is longer still.

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The Emotional Manipulation in Pharmaceutical Advertising

There is something deeply unsettling about being sold "salvation" between commercials for pickup trucks and potato chips. Perhaps that is what disturbed me most during the Super Bowl pharmaceutical advertisement that left so many Stage IV Metastatic Breast Cancer (MBC) patients recoiling in horror and extreme discomfort (and I've still not forgotten or forgiven that travesty, which you can read about here). Not simply the slickness of it, or the manipulative sentimentality, or the sexualization of a terminal disease, or even the grotesque amount of money spent to air it during one of the most expensive advertising events in the world.

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Facing Denials and Decisions with Incomplete Information

One of the often hidden burdens of living with terminal cancer is that the decisions never stop. People imagine the hard part is getting the diagnosis or hearing the word progression or running out of treatment options. And yes, those moments are devastating. But there is another kind of burden that receives far less attention: the uncertainty of having to make decisions while standing in the middle of a story whose ending has not yet been written along with having to justify the cost of the tests that may provide clarity to a nameless, faceless insurance company.

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Nine Year Metaversary

Nine (9) years is a strange country to inhabit when you were once told you might only have months. Time changes shape when it is measured not in vacations or promotions or retirement plans, but in scan dates, infusion schedules, pathology reports, and the quiet calculations you do before every holiday, every birthday, every milestone, every ordinary day. Nine (9) years of living with terminal cancer means I can no longer divide my life neatly into before and after. Cancer has threaded itself into everything long ago. It moved into the house with us.

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Building Connections Through Photography and Adversity

Recently, as I have done a few times since Stage IV metastatic breast cancer (MBC) entered my life in 2017, I sat down with Janelle Sea of Uplifted Lens to talk about what it means to build a life inside the realities of MBC. These conversations are never simple. They require opening doors that are often easier to leave closed. And yet, from the moment we began, it felt less like an interview and more like a genuine exchange between two people interested in the stories that shape us. Janelle has a rare gift for seeing people—not just through the lens of her camera, but through the lens of her curiosity and compassion.

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Well meaning advice

There is something about serious illness that seems to transform ordinary people into experts. The moment a diagnosis enters the room, advice follows close behind, bustling and relentless, carrying smoothies and slogans and optimism like talismans against mortality. Everyone suddenly has a philosophy. A cure. A mindset adjustment. A story about someone’s cousin who “beat it” by drinking green juice, manifesting positivity, refusing negativity, praying harder, thinking differently, smiling more, only eating kale, never eating kale -- the list is endless and often bizarre. Throwing lemons at the wall? As though survival were simply a matter of attitude or choosing.

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