Firsts I Never Wanted: Living With Stage IV Metastatic Breast Cancer (MBC)

There are firsts you look forward to, like first time you hold your freshly earth side baby. The first time your child sleeps through the night. The first day of school, the first lost tooth, the first goal scored, the first time you realize that the person sitting across from you is someone you want to spend the rest of your life with. The first time you see a parent as an equal adult and you have a friendship.

There are firsts you mark with photographs and celebrations, firsts you tuck away in the soft, ordinary corners of your memory, firsts that become family lore, told and retold until they grow bigger than the moments themselves.

And then there are other firsts.

The first time you go to a freestanding emergency room because something is wrong enough that you cannot convince yourself to wait. The first time you ride in an ambulance, surrendering the little bit of control you thought you still had to strangers who are trying to help you. The first time someone tells you that you have ascites, and a new word enters your vocabulary with the quiet menace of something that has already begun to rearrange your life.

The first time you are direct-admitted to an oncology floor, where the people around you are dealing with their own cancer, where the walls have seen more fear than most people will ever know, and where the word oncology is no longer a department you visit.

There are firsts that do not feel like beginnings at all. They feel like further departures from the life you thought you were living. They feel like further manifestations of the helplessness a medical system relies on to function.

I have been living with MBC since 2017. I know something about departures. I know the strange geography of a body that has become a place of uncertainty, the way familiar landmarks disappear and new ones emerge without permission. I know that the disease does not care about your calendar, your commitments, your plans for the weekend, or the finite number of ordinary afternoons you have left to spend with your family.

But even with all that knowledge, there are still firsts.

The first time an oncologist begins the conversation with “well, it’s not catastrophic”, and repeats this phrase multiple times, first time you fast for more than twenty-four hours because the imaging department is having problems staying on any schedule at all. You wait because you have to wait. Your body is already uncomfortable, already swollen with fluid that has no business being there, and now you cannot eat or drink for an entire day. The hours stretch. You watch the clock. You try to understand how something as basic as finding out what is happening inside your own body can become an exercise in endurance.

The first time medication arrives without warning. Consults randomly appear and disappear without seeing anyone. Treatment is discussed. Imaging is ordered. People enter and leave your room carrying pieces of a plan you have not been invited to understand or even be informed about. Decisions are made, or seem to be made, around you, while you try to piece together what is happening and why.

You ask questions. You wait for answers and wait and wait some more. You try to follow the thread, but the thread keeps disappearing around corners you cannot see. There is a particular kind of loneliness in being the patient in the bed while your life is being discussed by people standing around it or in the hall (often within earshot) or in rooms you are not invited to.

I understand that medicine is complicated. I understand that hospitals are busy, that emergencies happen, that clinicians are balancing competing demands and making decisions with imperfect information. I understand that no one has a crystal ball, least of all the people trying to treat a cancer that has already demonstrated its capacity to surprise us.

Understanding all of that does not make it less frightening to be the person who does not know what is happening to her. It does not make it acceptable to leave someone in the dark about her own care for DAYS after promising to return and explain.

“Shared decision-making” is a phrase that sounds almost too obvious to require saying aloud. Of course the person receiving the treatment should be part of the conversation. Of course she should understand what is being done, why it is being done, what the options are, and what happens next. And yet, sometimes, the thing that should be fundamental is the thing that is entirely missing.

I do not need to control every variable; I know better than that. But I would like to be included in my own life. I would like information before the next thing happens, rather than after. I would like to know why a medication is being administered, why a specialist is coming to see me, what the imaging is intended to tell us, even as clinician after clinician never even thought to touch my severely distended belly and only one person ever asked about my body type and if this shape is new. I would like to be treated as a person who can participate in decisions, whose INFORMED consent is required by law, not simply a body to which decisions are delivered (and sometimes never at all).

Especially now, when so much already feels beyond my control. Then, there is the ascites. I have never felt fifteen months pregnant with multiple babies before, but I imagine this is as close as I ever want to come. My abdomen is stretched and uncomfortable, my body carrying a weight that is not a baby, not a new life, not anything I would have chosen to hold. My intestines are squwunched up, shoving my stomach into my diaphragm, rendering my lungs unable to fully deflate or inflate.

There is no sweetness in this kind of fullness. No anticipation. No nursery to prepare, no tiny clothes to fold, no future arriving with the promise of a first cry. Just intense pressure. Discomfort. The constant awareness of something inside me that should not be there. And still, no fluid has been drained. Still, I am uncomfortable. Still, there are no answers.

That may be the hardest part: not knowing when the discomfort will ease, what is causing what, what the next hours or days will bring. My body has become a question mark, and everyone seems to be waiting for something that has not yet happened.

A shoutout to my parents who witnessed every interaction and made sure I was never alone during any interaction with medical staff and to my mom who fought for me every step of the way like the mama lion and mother of dragons she truly is. Their presence and efforts ensured that my husband could go to work and keep the boys’ on their schedule, which is so vey important to all of us

Thursday, I had treatment and fought HARD to get done in the hospital as much as possible. I am bracing for what I know is coming, because cancer and ADCs have their own rhythms, their own familiar aftermath. I know how to anticipate certain kinds of exhaustion, how to recognize the beginning of a difficult stretch, how to prepare myself for the ways treatment can take a day and then take many more of the days that follow.

I have learned to live in anticipation. What I have not learned is how to make that anticipation feel normal. How to stop measuring time by appointments and scans, by symptoms and side effects, by the distance between one uncertainty and the next.

These past four days, I missed time with my family, I missed appointments, podcast recordings, self care rituals so very important to me. Those sentences looks so small on the page. A few words. A simple statement of fact. But there is a whole life inside it. There are weekends that seem ordinary until you realize how much you wanted to be there for them. The meals, the conversations, the unremarkable moments that become precious precisely because they are unremarkable. Time together that cannot be rescheduled in quite the same way, because the people are the same but the moment is gone.

Cancer takes time in increments that are difficult to explain to anyone who is not living inside it. It takes the hours spent in waiting rooms. The nights spent worrying. The mornings surrendered to blood draws and scans. It takes the energy you would have used to be present, even when you manage to show up.

And sometimes it takes four (4) whole days in the hospital struggling mightily to understand. Each practitioner left my room after asking me if I’m a doctor. I’m not, but knew enough to anticipate and ask and dialogue and shamelessly name drop to get better attention.

At the same time, I am heartily tired of the firsts and this game. Tired of learning new words for new indignities. Tired of being surprised by what my body can do and what it can no longer do. Tired of waiting for explanations while trying to summon the patience to wait some more, while fasting, while insanely nauseous after taking necessary meds on a fully empty stomach because I did exactly what I was told I needed to do get the scan.

I am tired of the things I cannot change and the things I should not have to fight for.

I want answers. I want relief. I want a conversation in which I am an equal participant, even if I am not the person with the medical degree. I want to understand what is happening to me, and I want the people caring for me to understand that uncertainty is not an abstraction when you are the one lying in the hospital bed. I don’t want to be told this is my new normal and I’m not just living with terminal cancer but end stage MBC.

I want my weekends back. I want my family time. I want the ordinary things that cancer keeps making extraordinary. Mostly, I want there to be fewer firsts. I know there will be more. That is the reality of MBC: there is always the possibility of another symptom, another scan, another treatment, another word you never wanted to learn. I cannot promise myself that the next first will be a good one.

But I can say this: I am still here. Still asking questions (A LOT of questions). Still trying to make sense of what is happening. Still insisting that my life is more than a series of medical interventions, and that being sick does not mean surrendering my voice. Even now, even when I am uncomfortable and frightened and exhausted, I am a person. I am a first born daughter. I am a mother. I am a wife. I am someone who wants to be present for her family, someone who wants to understand her own care, someone who is still trying to make room for the life happening alongside the cancer.

I do not need every first to be a triumph. I do not need to turn every hard thing into a lesson or every terrible day into evidence of resilience. Some things are simply hard. Some days, all there is to do is endure them, tell the truth about them, and hope tomorrow brings something other than another first.

Today, that has to be enough as we work through tears to prepare our children for what is coming.

As we start 2026 Breast Cancer Awareness Month, please be on the lookout for PinkWashing and mark your calendars for the #LightUpMBC live show on October 13th, the ONE day all October set aside for those of us living with MBC.