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. Time to watch another soccer game. Time to celebrate another birthday. Time to imagine next summer. Bone mets came with pain, but I also learned to adjust to living with constant pain.
Then came new words: liver; brain, CNS involvement.
And suddenly the room felt smaller. No one had to explain why. Every oncologist knows these words change the conversation. They know they often signal a disease that has found a faster rhythm, a more dangerous cadence. They know the urgency that follows. They know why phones begin ringing sooner, appointments move from next month to tomorrow, and scans multiply almost overnight.
I knew too. Some knowledge is a gift where some knowledge is a burden. This was the latter. Because significant liver involvement doesn’t simply threaten comfort, it threatens time and brain metastases don’t simply threaten life, they threaten identity.
That may be the cruelest part of all.
I’ve spent years telling myself that I am more than my accomplishments. That my value isn’t found in productivity or intelligence or the ability to solve difficult problems. I believe that. I also know how much of myself has always lived inside my mind: the way I solve problems, the way I write, the way I remember tiny details about my children that no one else notices. The conversations with my husband after everyone else has gone to bed. The ability to connect seemingly unrelated ideas until they become something meaningful.
Writing has never simply been something I do and thinking has never simply been something my brain does. It is how I process the world. It is how I love.
So when cancer crosses into the brain, the fear isn’t merely dying, the fear is disappearing before you’re gone.
- Will I still remember the stories that shaped our family?
- Will words begin to slip away from me?
- Will my children someday sit beside me while I search for their names?
There are losses worse than pain. There are losses that feel like watching your own reflection slowly fade.
Meanwhile, school started and my boys are both in middle school this year. There are backpacks to replace, school laptops to charge, teacher assignments to check, physical forms to upload, pencils to sharpen. My Amazon cart is full of graph paper, highlighters, folders, and things that will probably disappear before October.
My calendar is equally full and thinking about all the appointments that have already occurred in the space of a few weeks is a little overwhelming; full spinal MRI, Liver MRI, liver biopsy, new specialized radiation oncologist, gamma knife radiation, consults with experts, starting new treatment. And those to come: adding a neuro oncologist to my ever growing list of doctors and maybe a new facility for specialized treatment if the lepto involvement is confirmed.
The strangest part isn’t that both calendars exist, it’s that both are equally real. At 9:00 a.m., someone explains lesions measured in millimeters. At noon, someone asks whether we remembered to buy colored pencils. At 2:00 p.m., we’re headed to the school to meet the teachers with every other parent in town. Soccer games at 5 and karate practice at 6.
Cancer has never once asked permission before interrupting ordinary life and ordinary life has never once agreed to leave, they simply coexist. One insists that death has moved closer. The other insists that homework is due on Friday and I must find a special hat for my son to decorate.
There are things no one tells you about this stage. No one tells you that eventually you’ll find yourself researching hospices agencies and interviewing medical directors not because you’ve given up, but because loving your family means preparing for possibilities you desperately hope they’ll never face. No one tells you that you’ll compare grief counselors with the same careful attention you once used comparing summer camps or soccer cleats. No one tells you that you’ll wonder who might help your children carry your stories if someday you’re no longer here to tell them yourself.
These searches feel like betrayal until you realize they are actually another expression of love. Hope and preparation are not opposites. You can believe wholeheartedly in a treatment while still making sure the people you love won’t have to navigate the unimaginable alone. Still, every search feels like an acknowledgment that death has moved closer and knowing that Trodelvy is my 12th line of treatment forces all of us to recognize that the road behind us is growing longer while the road ahead feels less certain.
Not hopeless, just uncertain. There is a difference. The temptation is to let cancer steal tomorrow before tomorrow arrives as it whispers that every ordinary moment is already becoming a memory.
Don’t get too attached. Don’t laugh too hard. Don’t make too many plans. Don’t start a new project. Protect your heart, but love has never worked that way. Love keeps buying school supplies. Love keeps planning birthdays. Love keeps assuming there will be another Tuesday, because if this illness has taught me anything, it is that ordinary moments were never ordinary at all. They were the whole point.
Cancer can count lesions. It cannot measure laughter around the breakfast table. Cancer can calculate survival curves. It cannot calculate what it means for a parent to help with reading or math one more time. Cancer can invade organs. It cannot define a life.
I don’t know how much time remains. I don’t know whether this treatment will work or for how long, but we know that it is unlikely to work for very long. I do know this: tomorrow morning there will be another appointment. There will also be snacks and backpacks to pack, permission slips to sign. A child who needs encouragement before walking into a new classroom and questions to ask about accommodations and implementation.
And somewhere between MRI results and school supply lists, between insurance approvals and first-day photos, life will quietly continue asking to be lived. Not someday, not after the next scan. Not when things become less frightening.
Now, because MBC has made one thing painfully clear: the future was never promised, it only ever felt that way. The only life any of us have is the one unfolding in front of us, disguised as another ordinary Tuesday.
No Half Measures 