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The bell I didn’t ring (and why)

I had an appointment at Northwestern yesterday—for a return check-up and a refill of my pump—and I walked in with a bounce in my step. Doubtless that was partly due to Delaney’s hair, which received the rave reviews it deserved. Besides that, my skin has cleared, I’m at my ideal weight, even the hole on the top of my foot has (mostly) closed up and it (almost) doesn’t hurt to walk on my peeling feet anymore!

You’d think that nobody would be more welcome at a cancer center than a patient who’s looking good and feeling confident. Yesterday, that felt mostly true.

Six weeks ago, it did not—and I’ve spent a lot of time thinking (and writing, and talking, and reading, and rewriting) about why that would be.

It was my first appointment after MSK authorized me for a chemo break, and I was excited to share the news with the home team. “Maybe it will last forever!” I enthuse to my NW oncologist—and unfortunately she takes my optimism as a cue to serve up a bitter dose of reality. She wants me to know that my cancer will almost certainly come back.

I know what the odds are, I say—but the odds would have me dead already! So maybe best not to pay too much attention to them. Right?

I had been in such a good mood, with big plans to ring the bell, a traditional end of treatment ritual I had not yet done. My favorite nurse had cued up my good luck song (“Living on a Prayer,” of course) and was set to FaceTime in Per for the event. I was not to be dissuaded!

So I smile bravely, hoping the strength of my optimism will be enough to convince her.

She takes this as a sign to double down on her warnings—and winds up convincing ME not just that a recurrence is likely—something I already know all too well—but that it WILL happen.

I’m so deflated afterward that I tell one of the nurses about it and ask if I should still ring the bell.

“If you want to,” she says meekly.

I don’t.

Instead I leave, pissed—and I get more and more angry with each step toward my car.

I should not have to give my care team a pep talk. Everyone knows that optimism leads to better results! What the actual fuck?

Per talks me down from that conversation, but it takes days, weeks to regain my equilibrium. He reminds me that it’s not the first time I’ve been in a different place emotionally than the doctors. On diagnosis, three highly qualified doctors told me I had a year or two and wouldn’t even discuss the possibility of surgery.

“You don’t know me,” said the voice in my head. And I was right.

And a year ago, when Dr Kemeny pronounced me NED and said I was done with chemo—I wanted so badly to believe her, but I knew that I wasn’t.

“What makes you think this time that YOU are wrong and THEY are right?” Per asks.

I don’t have a good answer to this.

So I spend a lot of time thinking, reading, meditating, seeking answers—and I start to feel like I am receiving signs.

A few days after the appointment, I have a Reiki session. Beforehand I announce my intention to myself—not to be cured, necessarily, but to have my faith in my intuition restored. An hour later, I log onto a chat board where I had vented about my appointment, to find a lengthy and incredibly detailed response—its author, clearly some kind of scientist, had researched “DLMs” (disappearing liver metastases) and shared comprehensive metrics and data that supported the possibility—if not the likelihood—that my cancer might not return. It is the first and only reply and a stark departure from the typical "sucks / hang in there" type responses that are common among patients.

The author ends by stating that, based on all the available data, it does not seem naïve or misguided to trust my intuition.

As I read it, I laugh out loud at what seems like such an incredibly literal response to my ask.

I read a book written by an oncologist-turned-therapist. The author suggests that anger in the face of cancer is really the will to live, manifest. I find this idea comforting.

My therapist and I revisit the premise of being ego-driven —how far you’ll go, sometimes unconsciously, to make it more likely that you will be “right.” How much of my doctor’s ego is caught up in her quest to be right about my prognosis? Maybe for her, optimism is too risky—even knowing that a positive attitude can result in better patient outcomes. Protecting her ego means playing the odds.

I know the odds; but I know me better.

After, I’m feeling more confident about my intuition, freer and more joyful. I start to drive a little faster—I'm having fun—and change the radio station just in time to hear my good luck song come on: “Living on a Prayer.” I’m still shaking my head at the timing when the next song begins: Capital Cities’ “Safe and Sound”—and at this, I laugh out loud again, and begin to sing along.

Whether these are true signs or not is beside the point—they are clearly what I need, and with each passing day, I trust myself more. So three weeks after that appointment, at my next one: I ring the bell, and I am jubilant. I even take a video so I can post about it!

But then—I don't.

For a long time I'm not quite sure why, and then suddenly I know exactly why: I don’t want to be wrong either.

Every other appointment, they pull my CEA. A cancer marker, it has been a very sensitive and reliable leading indicator for me and is one of the reasons we felt confident breaking from treatment. It had crept up just a bit the day of my “deflation” appointment—not enough to be statistically significant, but we agreed we would scan immediately if it rose six weeks later.

That was yesterday. They pulled it again, and my heart dropped when I saw the “new test result” notification pop up on MyChart. Before I had time to consider whether to look, a text came through from Per: 1.1!!

Right back down. Back to steady. Back to breathing, to listening to my own body.

Back to believing, to winning.

And onto the start of a whole new me.

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