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.

In 2017, when I was initially diagnosed with de novo Stage IV Metastatic Breast Cancer (MBC) seeing my entire skeleton covered in mets was terrifying. That first nuclear bone scan was so black that the white of my bones was barely visible in many bones.

There is no gentle way to say that. There was cancer in every bone. Bones that had once been anonymous and invisible became a map of disease. My skeleton, the structure that had quietly held me upright my entire life, had become evidence.

Then came titanium rods in both femurs. Later, a broken pelvis. Broken vertebrae, compression fractures. The mechanics of a body I had previously taken for granted suddenly required conscious thought. How to sit. How to stand. How to walk. How to sleep. How to move without pain.

And then there was the pain itself.

Chronic pain is its own education. You learn its rhythms and its vocabulary. You learn what you can do and what you cannot. You learn how to spend your energy, your limited spoons. You learn that sometimes getting through the day is not about conquering anything, it is about managing all of it as one more thing is added to the pile.

And somehow, eventually, that became ordinary. Not good, certainly not easy. Ordinary.

That distinction matters.

Because I think this is one of the strangest things about living with terminal cancer: the things you once believed you could never survive become the things you simply do because there is no other option.

Then, in 2022, there were liver mets. That hit differently.

Bones were terrible, but somehow I had managed to construct a life around the pain. The liver felt like a line had been crossed. Cancer had moved from the scaffolding of my body into a visceral organ, somewhere deeper and quite essential for staying alive.

And the prognosis changed. Overall life expectancy shifted. Death seemed closer, more specific, more like a thing that had entered the room and taken a seat.

I was afraid, of course I was afraid, but then something peculiar happened. Time passed. The terrifying thing became the thing I lived with.

The liver mets in 2022 did respond to treatment but the threat did not disappear. The immediacy of fear faded, just a little.

This is perhaps what I have learned about fear: it does not necessarily get smaller, I learn to live around and with it. Compartmentalize, handle it, shape it a little.

From the beginning, I was afraid of losing myself. That may have been the fear underneath all the other fears. I could imagine pain. I could imagine surgeries. I could imagine treatments. I could even imagine dying, but I have been terrified of becoming someone else before I died.

I worried about brain mets. I worried about hallucinations and seizures. I worried about the possibility that cancer in my brain could change me in ways I would not even be aware of. I imagined my children looking at me and seeing someone they didn’t recognize.

That fear lived quietly in the background for years. And then, a few weeks ago, it happened: Brain mets were added to my growing list of diagnoses. Gamma knife radiation to the long list of procedures. Another thing from the list of things I had been afraid of from the beginning became real.

There is something almost ironic about that. After all those years of imagining the worst, and then the worst thing becomes Tuesday or Wednesday. Or whatever day it happens to be.

You make the appointment. You sign the forms. You lie very still. You undergo the radiation. You go home. And you wake up the next morning. Still you. Still here.

I am acutely aware that my experience is possible because I’ve been able to get surveillance Brain MRIs. I entered this MBC experience with a long history of migraines. We discovered the mets in my brain while they are asymptomatic because of that surveillance and the outcome I am experiencing right now has been different because of that.

I am tired in a very new way, yes. Scared, yes. Changed, certainly. But still me and I am so very thankful that this is possible.

Then came Trodelvy, a new to me treatment in a long line of treatments, which I started 6 days after that gamma knife treatment to my brain.

I’m done with the first cycle and I can feel the effects of gamma knife and the chemo colliding in my body. Fatigue has become tangible presence. Another thing to account for. Another calculation in the daily arithmetic of what I can do and what I cannot.

Super unfun, to put it mildly, but becoming familiar already. And that is the part that keeps surprising me: the speed with which catastrophe can become routine.

I don’t mean routine in the sense that any of this is normal. It isn’t. There is nothing normal about MBC. Nothing normal about watching scans and lab values and treatment options narrow around you.

I mean that human beings are astonishingly adaptable. We assimilate. We adjust. We learn the new shape of our lives.

Fear keeps presenting me with a new monster, and each time I think: This one. This is the one I cannot handle.

And each time, somehow, I do. Not easily, never easily, but I do.

I have gotten more time with MBC than so many people do. I know that. I carry enormous gratitude for that time alongside the grief of knowing it is finite.

I want more time, of course I want more. I want to watch my children grow up. I want to see who they become. I want to watch them find their people. I want to know the people they will love and build lives with. I want to see the next generation.

I want ordinary things.

That is perhaps the cruelest part of terminal illness: how extravagant ordinary becomes.

I also know the odds are changing. The reports keep showing me how the cancer in my body mutates, creating new ways to overcome every tool in the toolbox. It spreads, quite a bit faster in this this latest progression.

The treatment options dwindle quickly. Each remaining option harder on my body. I can see the dominoes falling and I know the ending.

There is a particular kind of honesty that comes with knowing this. I don’t need to pretend the dominoes aren’t there. I don’t need to call them something else. I don’t need to manufacture optimism where it doesn’t exist.

Death is closer now, more immediate. I can feel its shadow in ways I couldn’t before.

But fear? Fear is different because I’ve met it before. Again and again and again. And now I am living inside the things I was afraid of.

That is the lesson I keep learning. Not that everything will be okay; I don’t and can’t know that. Not that I am brave; I don’t always feel brave. Not that fear goes away; it doesn’t, it moves, it changes shape, it finds the next vulnerable place.

But so do I.

The person who saw that first scan in 2017 could not have imagined the life I am living now. She could not have imagined titanium rods, a broken pelvis, broken vertebrae, chronic pain, liver mets, brain mets, gamma knife, one more chemo, one more scan, one more treatment, one more frightening conversation.

She could not have imagined surviving all of those things and maybe that’s because survival isn’t something you can imagine from the beginning.

You can only live it one terrible thing at a time. One new fear. One new diagnosis. One new treatment. One new morning, until the thing that seemed insurmountable becomes ordinary.

Not because it was ever small but because you learned how to carry it.

And so, when I look at the dominoes now, I am afraid. I would be lying if I said I wasn’t, but I am also less impressed by fear than I used to be.

I know what it promises.

You can’t do this.

This is too much.

This is the thing that will break you.

And maybe one day, one of those things will. Maybe there really is a thing I cannot assimilate, bur it hasn’t happened yet.

Today, I am still here. Still me. Still tired. Still scared. Still wanting more time. Still watching the dominoes falling and still moving through them. Not easily and not without pain, but moving.