Fear of the Unknown

I’ve started treatment. As mentioned in a previous post, I’ve developed a 5 cm growth in the area near my armpit, and it’s so unmeshed in muscle/sinew that it’s currently inoperable. The goal with this new treatment (also called second line, which means you’ve already been through chemo once) is to reduce the tumor in order to be able to cut it out.

The drugs? Xeloda and Taxotere. The Taxotere comes in the form of an infusion every three weeks, and the Xeloda is a 2 weeks on, 1 week off cycle of 8 pills a day. So far the 3-4 days after infusion are a wash of exhaustion and aimlessness*, but otherwise so far so good.

I keep returning to what the oncologist said: that there’s only a 30-40% chance of success with this. That even if all goes well, there’s a very high likelihood of recurrence, and then, then….who knows? Who knows? It’s like I call into a canyon and cancer has muted the world. There’s no reply. Just silence.

It’s in this space that I live my days now. In treatment for a recurrence, running the second lap around the infusion clinic, I’m not as optimistic, not as intrigued about the novelty of cancer treatment. The first time felt so much more new somehow, I felt like I’d joined a sisterhood and even baldness felt cool. Tough. Empowering, even. And I thought that if I beat it this time, then surely I’d be one of the lucky ones who made it past the 5-year mark. 

Not to be. It came back. The cancer came back. And this time, more so than the last, I’m tired and grief-stricken. The hair loss stinks, quite frankly, and this recurrence feels somehow more serious. My family is quietly afraid, and the pain this disease has inflicted on friends, family and coworkers fills me with such sadness. I hate it. I hate this disease. I hate cancer.

It’s these small, repeated losses that begin to add up. I picture a full, 1000 piece puzzle with color, depicting someplace beautiful. Paris, say. That’s my life. But now each new treatment, each surgery, each new diagnosis, each new big and small loss is a theft of its parts until, corner by corner, segment by segment, only a few disconnected pieces remain.

What goes with what? And who, what’s left?


(*except for an initial migraine reaction which sent me to the ER twice, and to the MRI machine)

The Tyranny of Positivity

Over the course of this diagnosis I have often heard people say, “You have to stay positive. You have to stay strong.” Often these are people who have not had cancer. They mean well, and I very much empathize with the struggle to find language that offers hope, support, and kindness in what can feel, as a bystander, like a helpless or deeply uncomfortable situation.

And it is a struggle. So much of the language we use to describe cancer revolves around war: battle metaphors, fights, soldiers, destructions, killing, death. These words have not felt right to me, as I am no warrior. I could say incoming to the chemotherapy, but because it’s not bullets, I don’t. I don’t wear armor, I don’t patrol. And I will never carry a gun.

The language of a cancer “journey” has also felt inadequate: Where exactly, I wonder, am I going, and why can’t I go home? Where are my exit tickets, and what’s the return route?  There’s something that implies desire or adventure about the language of travel too, as if the ticket agent said, “Hey, we overbooked for Oahu, but here’s Cancer. Terminal 3.”

No go.

And so, in thinking about writing this blog post, I wanted to home in on why remaining positive, staying strong, or remaining hopeful on your cancer “journey” might all feel wrong. Or right. Or a mixture of all of these, or none.

Have you read that poem, “Wild Geese,” by Mary Oliver? She starts it with the line “You do not have to be good.” This one line has been such a touchstone for me, for what it tells me is this:  Authenticity matters more than obligation. Truth is what matters most. And I have taken this to heart. Reader, let this be your creed: You have no obligation to please. Your cancer is yours, your illness - whatever that might be -  lives only in you. Of course family and friends express care, but the home of all of this lives in your body, and therefore the ownership and truth of it begin and emanate from you. In that same spirit, I have resolved, in this process, to allow the full spectrum of grief, anger, surprise, gratitude, and yes – love and joy – to enter the circle. Not to wallow, not to ignore, but to give all of it its due. To live it, to breathe it in, and (this is important) when it’s time - to let go. But I will not hurry the grief, I will not rush the anger. I will not be told to go on quickly now, when time is all I have left.

The truth is that you do not have to be good. You do not have to be anything at all. You are not obligated to answer questions, to answer the “How are you?” that assumes a quick response, with the asker not realizing the ache the question triggers, and the fireball of emotions your belly carries in the fast few startled words you are able to utter.

You can say nothing at all. Or you can laugh. There’s a little crazy in it and this absurdity can heal.

All of it, all of it, is part of the arc of it, like wild geese, or the full turning of the day – “over and over” like cancer, like darkness and light “announcing its place in the family of things.”