On Friday night, after Jimmy and I got home from seeing “You Can See Everything,” my Signatera report finally came back. The irony of receiving molecular blood test results after having just watched 3 hours of an Elizabeth Holmes documentary is not lost on me. However, my stomach dropped when I saw what they said.
Positive.
Meaning they had found molecular traces of Krang’s DNA still floating around my bloodstream. Not the results I was hoping for, but the reading was 0.35 MTM/mL, indicating a relatively low level of circulating tumor DNA (ctDNA). And I did just have a scan in September that confirmed there was no visible evidence of disease. So while scientifically, positive is positive regardless of the number, I personally took this new information to confirm that the post-op cleanup chemo that I originally dodged, is actually needed. I began thinking of it as leftover cancer glitter, from the party Krang threw, that simply needs to be cleared in order to move forward with survivorship.
And on Monday afternoon, my oncologist confirmed: I will, in fact, be receiving those 4 rounds of chemo that I never originally finished, after all. So starting November 5, we return to the goblet of poison, cold sensitivity, immunosuppression, thinning hair, and uncertainty.
Am I bummed about it? Absolutely. It’s that dreaded feeling every cancer survivor knows: “I knew better than to get comfortable.” My oncologist had told me I was cancer-free, surgical pathology showed an extraordinary response, clear margins, and imaging that wasn’t showing any cancer. I had moved into celebration mode; and I wasn’t celebrating something imaginary, either. I was recovering, getting my life back, running again, returning to the office, and doing a little celebratory shopping. As one does.. I knew this test could still come back positive, but I had every reason to celebrate with the information I had. And then this highly sensitive blood test showed up with new evidence. I’m not going to lie and say the whiplash of having to shut the party down isn’t overwhelming. And yes, I’m annoyed that the win was announced before the officials finished reviewing the footage. There’s some wounded pride mixed in there, too. I had made it to the finish line, thrown the confetti, and now someone is telling me there’s another lap.
All things considered, I think I handled this pretty damn well. I got the news Friday night. On Sunday, I DJed again. On Monday, I went into the office. I participated in life and this setback didn’t bring everything to a screeching halt. Apparently, I’ve gotten pretty good at carrying on despite uncertainty.
One thing that’s gotten me past the disappointment is reflecting on this entire journey so far. When I was first diagnosed, I faced a much larger, visible cancer burden. Stage IV colorectal cancer with massive liver tumors. A diagnosis that came completely out of nowhere. No guarantee that chemotherapy would work, that surgery would become possible, or that I’d ever hear the words no evidence of disease. And then, almost relentlessly, things started breaking my way. My CEA plummeted, my tumors shrank dramatically, I tolerated chemotherapy remarkably well, and surgery became possible within the first 6 months of diagnosis. I spent months waiting for the other shoe to drop, but instead kept getting reasons to be hopeful. I got through two enormous operations and my pathology showed that the majority of the liver tumors were no longer viable. I got my life back so much sooner than I could have reasonably expected back in February. None of that is small and none of that disappears because of a positive Signatera. How lucky am I that nearly nine months into this ordeal, I’m only now facing my first real setback since diagnosis? How lucky am I that I’ve had so much to celebrate before having something to be disappointed about? How lucky am I to have made it to this point, when so many others never get that opportunity? Instead of interpreting this as “Well, there goes my winning streak,” I’m choosing to reframe it as “Holy shit, look how long that winning streak lasted & how far it got me.”
I am incredibly fortunate to have come this far. But I am also incredibly pissed off that I have to keep going. And both can exist at the same time.
I also came to appreciate that bad news exists on a spectrum, and this was about as good as bad news gets. In February, the bad news was advanced metastatic cancer with no guarantee that treatment would even make surgery possible. And now in October, it’s molecular evidence from an extremely sensitive blood test that cancer may remain, despite no visible recurrence. There’s no new tumor on a scan and no confirmed location of disease. And that’s a super important distinction I’m keeping in mind.
Another thing I keep mentally returning to: this was my expectation after surgery. I assumed there’d be cancer glitter. I went into surgery knowing that, despite removing all visible disease, there could still be microscopic cancer cells hanging around. But now, I’ve had eleven weeks of recovery, time to imagine that perhaps I was completely finished and had a taste of being done. And somewhere along the way, the outcome I’d originally prepared for started feeling like a setback instead of the possibility I’d always known existed.
I didn’t lose eleven weeks because I thought I was cancer-free; I gained eleven weeks of living as though I was. I was prepared to clean up the cancer glitter in August, I just have to get the broom out of the closet where I stored it. Maybe that makes this less a story of having my victory taken away and more a story of returning to an unfinished part of a plan I already understood. I haven’t gone backward to January; I haven’t even necessarily gone backward to August. I’m continuing from where I left off, but with more information.
What’s funny, though, is somewhere in processing this news, I found the self that I thought I’d lost after becoming cancer-free. For weeks I’ve been trying to figure out who I am after cancer. But on Monday, the day I found out I’m going back on chemotherapy, something felt familiar about the way I was thinking. My perspective and humor had resurfaced. I caught my brain processing this and looking for a positive reframe and thought, “Oh. THERE she is.”
I wonder whether part of what has made survivorship so disorienting is that I was looking for some new, post-cancer version of myself. Someone with a transformed outlook, a different relationship with mortality, a profound new identity. But maybe I don’t need to become someone new. Maybe cancer has changed some things about me, and will continue to. But the person who knows how to make meaning out of absurdity, who can be devastated and funny and grateful and furious in the same afternoon? She was here the whole time. It’s wonderfully ironic to have spent the last month wondering who I am after cancer, only to find myself again when cancer has the audacity to interrupt the after.
If “I Took the Drugs and the Drugs are Working” was the theme song before, this has certainly been on repeat the last couple days, with an eye roll and a smile knowing I’ll get through this chapter, too.
Just when you think you’re in control
Just when you think you’ve got a hold
Just when you get on a roll
Oh, here it goes, here it goes, here it goes again
Oh, here it goes again
I should have known, should have known, should have known again
But here it goes again
Oh, here it goes
Oh, here it goes
Oh, here it goes again
Oh, here it goes again
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