It's back: and my ego knew it
What if ego is what drives scanxiety? (April 1, 2020)
What Per posted on April 1, 2020:
It’s back.
The two words that I’d least hoped to post here.
At least, certainly not so soon—we were just starting to get used to the idea of Gina being healthy.
But at the end of last week, we got a call that a CT scan showed two new suspicious lesions on her liver; and we learned last night that a PET scan confirmed they were active cancer. Gina will likely start 8 weeks of chemo on Monday morning. Then we’ll have another scan to inform how we will proceed.
It’s scary that it’s back, but it’s also oddly familiar territory. While it’s easier to wrap our heads around because we know better what lies ahead, it’s also clear that it won’t be quite like last time.
On the plus side, there are only two tumors—both smaller than two centimeters in diameter—a much better situation than when we started. But the current COVID-19 concerns will make for a more isolated and potentially trickier treatment regime for Gina. Northwestern Memorial, where Gina will get all of her chemo this time around, isn’t letting anyone except patients above the lobby level. No visitors. Not even me.
But in the everything happens for a reason category...
When Gina finally got her drains out in January, she was still having trouble breathing comfortably. The plan had been to have 4-6 months of mop-up chemo, but because her scans stayed clean across her extended recovery time, her oncologist opted to forgo the usual chemo.
If everything had gone to plan, Gina would now be at the tail-end of her chemo: at her weakest, dangerously immunocompromised, and at the worst possible time.
Instead, she’ll be starting chemo feeling strong, and with a clear understanding of what we will need to do to keep her safe. ⭐️
Telling the kids sucked, but even that was easier than the first time around—for both them and us.
It’s back, but we know we can do this—and we know you’ll all be there for us...socially-distant but awesomely supportive. Kindly dust off your star-making machines...Gina’s gonna need them.
❤️🙏🏼⭐
With Love,
Us.
Looking back today:
First, I have to say that it’s weird writing about my first recurrence today, two days before I’ll be getting my nine-month scans at MSK in New York.
I hadn’t planned it that way, and even if I had, the content calendar I set up in September has been reasonably compromised by the impacts of real life. So, I couldn’t have planned this coincidence if I had tried!
The timing has made the past few weeks tougher on me emotionally. I’ve been more anxious about my upcoming scans, and anxious for longer, reliving the weeks before my first recurrence here on Substack, each essay equipped with unintentional foreshadowing.
Yet, reading and writing about shared anxiety has been my most powerful refuge, as well. This essay by Martha Bayne in Bell, Whistle. Every DM my LinkedIn post prompted— “thanks for saying that; it’s exactly how I have felt”—makes me feel a little safer.
Every cancer journey may be unique, but scanxiety seems to be more reliably consistent across survivors: no matter what your type of cancer, chemo protocol, stage of journey or anything else, getting a scan drums up the kind of angst only a brush with ones’ own mortality can deliver. Scanxiety as a shared experience helps fend off the idea that my sense of disquiet is a Bad Sign.
I’ve often pondered about why scanxiety seems to get worse the better you feel. I’d always considered it to be driven by the higher stakes when you feel better; but just a few hours ago I started to wonder if that, too, is a function of ego—because there is nothing the ego likes better than being correct.
Today, I feel healthy, and I consider whether I would be surprised to hear that the radiologist found something on the scan. The answer should be “Yes,” and yet, I catch myself thinking, “No.” I suddenly realize this is because I know what I will do if I get bad news next week: I will look back and think, “Oh, this is why I was feeling so anxious.”
Wow, but that kind of makes sense:
What if scanxiety is there to protect the ego from being wrong—and that’s why it seems to feel worse when I feel better?
When I recurred the first time, that was the silver lining. Of course, I was upset. I knew that recurring reduced my overall chance of surviving versus someone who had never recurred; and realizing I now fell into that category hit very, very hard.
Still, I realized I wasn’t surprised. My body had been telling me something wasn’t right, each time I struggled to put on a shirt, joints too sore to allow my arms to move at the shoulders. “I knew it,” I said to myself. My ego snuggled cozily inside me, curled like a cat warming itself in the glow of the licking flames of my fear.
I barely let myself process the news before I was creating a new narrative about it. Of course, I immediately found myself wondering whether or not this would have happened if I had done the mop-up chemo. Maybe not, I acknowledged; but I might have endangered myself even further had I been flying back and forth to New York for chemo that January and February, immunocompromised and not yet aware of the lurking danger of the coronavirus that would soon wreak havoc on the city.
So, this was All For The Best. Clearly. Usually, I believed that.
But mostly, I felt OK about the recurrence because I knew I didn’t yet feel done. And also, because I felt like I didn’t deserve to be.
I wasn’t happy, but my ego was feeling just fine—it knew it was right.
This actually makes a lot of sense. I have my first 6-month scans this week and I find myself at a loss as to where to put my mind. It feels egocentric to prepare for the worst, and unbearably vulnerable to expect the best. Striving for the neutral mind, but it is terribly elusive. Thank you, again, for the shout out; I'm glad to know whatever I'm doing is resonating!