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 we are not going to say it out loud yet, but we are thinking it.

You learn to expect the unexpected; and still, there are some things you don’t expect.

We suspected that the liver mets had returned and the tumor markers were certainly giving us reason to pay attention. Liver function tests were signaling an increasing issue and my CA 15-3 had climbed dramatically (for me), reaching 856 on July 31. The PET/CT ultimately confirmed what we had been worrying about: numerous new hypermetabolic metastatic deposits throughout the liver.

So, yes, knowing that there were numerous lesions in my liver wasn’t good news, but it wasn’t exactly a surprise and I think we might have been ready for that.

The brain mets, those were out of left field. I don’t think I can adequately explain what it feels like to see the words intracranial metastatic disease attached to your name.

Even after almost a decade of living with this disease. Even after eleven-ish lines of treatment, brain metastases feel different. Maybe because the brain is supposed to be the command center. The place where I live. The thing that makes me me. Maybe because there is something uniquely terrifying about cancer deciding it wants to set up shop somewhere that feels so fundamentally personal.

The Brain MRI was not subtle. There has been considerable progression of metastatic disease in my skull bone, with innumerable areas involved and the most confluent disease in the frontal bones. There is slight extension through the right frontal bone into the dura, along with new enhancing lesions inside the brain and concerning enhancement involving both trigeminal nerves, signaling the possibility of leptomeningeal disease.

And there it was. Another line crossed. Another thing we weren’t expecting.

So we did what we do, we made appointments, lots and lots of appointments. We talked to specialists, some new and some more established; some doctors and some patients fluent in different ways. We asked questions. We weighed risks. We made decisions with incomplete information because apparently that is one of the central requirements of living with MBC. I underwent multiple MRIs, a liver biopsy and received referrals to multiple new specialists.

Gamma Knife is already done, one thing checked off the list.

Except, of course, it isn’t really a list. It is more like a constantly regenerating hydra of brutal medical disasters, one after the other. Cut off one head and five (5) more appointments appear.

Now we are working on figuring out whether there is leptomeningeal involvement. That sentence is one I would have preferred never to learn how to say. There is still uncertainty around exactly what is happening and what it means for the next steps. The MRI showed enhancement along the trigeminal nerves, but the spinal MRIs were clear and a lumbar puncture or two may be in my future.

And so we wait. Again.

Waiting is such a strange activity when you have terminal cancer. Before cancer, waiting was usually attached to something good. Waiting for Christmas. Waiting for vacation. Waiting for the kids to wake up on Christmas morning. Waiting for school to start. Waiting for school to end.

Now waiting means waiting for pathology. Waiting for scans. Waiting for insurance approvals. Waiting for doctors to call. Waiting for appointments. Waiting for the next treatment. Waiting to see whether the thing we just did actually worked.

Waiting to find out how much of your life has changed. And somehow, in the middle of all of this, the school year started. Of course it did, because cancer does not care about calendars.

The school supply lists still arrive. Meet the teacher happened a week before they made a mask and firmly attached me to a hard gurney for 68 minutes. Schedules still have to be figured out and shoes still need to be found even while I get calls about a variety of deeply personal medical issues throughout the day. Forms still need to be completed and tryouts for school based sports. There are lunches to think about and alarms to set and backpacks to organize and approximately seventeen million tiny details that somehow continue to matter even when your brain is occupied with questions about MBC.

The kids still need their parents and I still need to be their mom. This is one of the strangest things about cancer. The scans can say progression while the laundry says Tuesday. The MRI can say metastases while someone needs help finding their soccer shin guards and their belt for karate. The PET scan can show a body full of disease while school projects need to be completed and upcoming tests to prep for.

Life refuses to become appropriately dramatic, it just keeps happening. And maybe that is part of what makes this so difficult. There is no clean separation between cancer life and real life. It is all real life, our lives.

So now we have another treatment decision. On August 20th, perhaps as you are reading this post, I will start Trodelvy. A new drug (possibly my 12th line of treatment). A new infusion schedule. New side effects to learn. New possibilities. New things to be afraid of. New reasons to hope.

And I will do it while school year is on its way to complete the first full week because apparently that is what we are doing.

I wish I had something profound to say about all of this. Some beautiful lesson about resilience or perspective or appreciating every moment.

But honestly?

Sometimes progression just fucking sucks. Sometimes you can be grateful and terrified at the same time. Sometimes you can be hopeful without being optimistic. Sometimes you can understand exactly how serious something is and still get up the next morning and make coffee. Sometimes you can be completely exhausted by the absurdity of it all and still laugh at something silly your kid says. Sometimes you can know that your disease has progressed and still make plans for next month. Sometimes you can interview hospice agencies “just in case” while holding onto every shred of hope until your fingernails bleed.

That isn’t denial. It is life. I have spent almost ten years learning that MBC does not move in a straight line. It doesn’t follow the neat progression of a story where there is a problem, a solution, a victory and then an ending.

There are instead these terrible little interruptions. Left turns. Unexpected chapters. New places. New treatments. New scans. New fears. And somehow, still, new mornings.

The liver was a place we suspected. The brain was a place we didn’t anticipate. Now both are part of the landscape. I don’t know exactly what the next few months will look like. I don’t know what Trodelvy will do. I don’t know what the leptomeningeal workup will show. I don’t know how many more appointments will appear on the calendar. I don’t know what the next scan will say. I don’t know.

And I hate not knowing.

But I do know this: on August 20th, I will walk into an infusion center and start another treatment. Somewhere nearby, school will be starting, my eldest will be at soccer practice. Backpacks will be filling. Schedules will be changing. Life will be moving forward. And so will I, not because I’m fearless. Not because I have figured out how to do this. Not because I believe everything will magically be okay, but because this is where we are.

And I have learned over and over again, there is no half measure for this life.

So here we go.

Again.