Friday, April 19, 2019


"Wow, look at those nails. Did you do that yourself?" the anesthesiologist asked.

He was lifting the top of my gown and plunking electrodes along the top of my chest as he talked. Yes, I said, I'd done it myself. It looked like nail art, but it was just a polish. 

The night before, I’d chosen the multichrome coating of sparkle expressly for this day, anticipating the discomfort and the waiting. Within the small universe of things I could control, applying what looked like a far-away galaxy on my fingertips was one.

But that felt like a lot to say, so instead I muttered, “There’s a lot of innovation in nail polish these days.” The anesthesiologist, though, seemed to have stopped listening for my answers and had moved on to joke with the (male) assistant about how he maybe he would do the same to his nails later. As they worked over me, enjoying their own banter, I realized I didn’t need to be part of this conversation. In 90 seconds I was going to be unconscious.

On the phone before the surgery, the nurse had made a point of saying my anesthesia would be of the "twilight" variety. As she described it, I would be unconscious but would wake up quickly afterward. Though the use of twilight didn't really make sense to me in this context, I appreciated the word. It suggested a sunset, winding down, and cheesy novels.

But when asked before the surgery which type the anesthesia would be—"twilight" or "general"—the doctor wasn't having it. 

"Well, that's semantics," he said. "If you're asleep, it's all general, right?" 

I looked at him blankly. "Any other questions?" he asked. His demeanor did not encourage further questions.

In another room, a nurse was interviewing an elderly man. "On a scale of 0 to 10, what is your pain?" 

"Three or four," he said, "But I can't walk!" As in, "Duh, I'd be having a lot more pain if I were ambulatory."

"And when you leave here, what would you like your pain level to be, on a scale of 0 to 10?"

"Zero!" he answered, quite reasonably.

"We can't do zero," she said, making me wonder what she was really asking, then. Another nurse had told me the same thing when going over the discharge instructions. "We will manage your pain as best we can," she said, "keeping in mind that we can't necessarily get it to zero."

These conversations were not the first time the problem of semantics had appeared over the past several weeks, when words seemed like critically important yet wholly inadequate tools for describing whatever was happening to me. The medical oncologist I saw, for example, had stopped herself from uttering the C-word when describing my condition. My surgeon, on the other hand, was unequivocal. “This is cancer,” she said.

Ductal carcinoma in situ, or DCIS, apparently, occupies the same place of semantic limbo as twilight anesthesia and pain scales. Mine was extremely low grade and going nowhere, I was assured. To some, this means it qualifies as something else. But to others—well, semantics. That C in DCIS is there for a reason.

Many doctors agree that DCIS is, in and of itself, not life-threatening, but they do not seem to agree on what can or should be done to ensure it stays that way. "DCIS is probably overtreated," my oncologist said. That's because if it comes back, half the time it will be invasive. Who's up for a game of boobie roulette? 

In my case, the DCIS was not palpable and nearly invisible. If the radiologist hadn't spotted some tiny but suspicious calcifications on my annual mammogram, I wouldn't have known it was there. 

That, combined with the lack of consensus on whether DCIS even rates as cancer, made the whole experience feel disconcertingly interpretive. I had a range of options, from preventive mastectomy to minor surgery with or without radiation and/or Tamoxifen, with no "right" answer. 

How aggressive I wanted to be in treating this essentially came down to how unlucky I was feeling. 

I was handed multiple comparative probability charts, with caveats—there is no handy scale that includes every single factor that will influence whether not you get cancer. The highest number I saw was an 18 percent chance of DCIS recurrence within 10 years—that's with no mastectomy, no radiation therapy, no Tamoxifen. 

Some people might be OK with 18 percent. Others find even 10 percent intolerable, my doctor told me. They want zero.

But there is no zero guarantee for recurrence, any more than for pain. Even a mastectomy carries with it a 5 percent chance that some cell in there will, once again, go rogue. For me, even though the genetics testing came back clear, my mom's breast cancer, along with other factors, put me in a "high risk" category.

The day after my second surgery, which was done to "clear the margins" after the first round revealed DCIS, I was lying comfortably on the couch reading Anne Boyer's harrowing account in The New Yorker of what it is like to really have breast cancer. My pathology on the second round had come back clear. For the umpteenth time I became aware of how the odds had worked out in my favor. This should make me relieved and happy—and intellectually, it does. 

But emotionally, I've been feeling mainly grief, numbness and confusion after weeks of tests and scans and needles and surgeries. It is as if I've watched myself narrowly avoid a very bad accident. It feels like there should be explanations—reasons that can help me face a non-zero future, matrices to explain why so many others fall on the wrong side of the odds, semantics to smooth it all out—but there aren't. 

Of course there aren't. Such a preposterous notion would occur only to someone gifted years of luck and health. We're talking about a life with only one surgery before I was in my 40s, and it was a tonsillectomy for which I was perfectly prepared by a pop-up book called Going to the Hospital, by Bettina Clark. 

In some ways, for better or worse, this interlude feels similarly preparatory. I couldn't see or feel the DCIS, but could only imagine it. I imagined it as a seed that lived in the twilight. The seed, I am inexpressibly grateful to say, is no longer malevolent. Now that I am awake, maybe it can grow into something else.

Sunday, March 24, 2019


She had sat there, she said, and thought about her own lifelong habit of explaining herself, and she thought about this power of silence, which put people out of one another's reach....Yet if people were silent about the things that happened to them, was something not being betrayed, even if only the version of themselves that had experienced them? —Rachel Cusk, Outline

More and more I wondered what the point was of constantly chronicling my own experience. How could I possibly say anything original, or worth reading? And why was I even trying to, when so many talented writers could do it so much better than I, and meanwhile, people were paying me to write other, far more practical things?

After awhile, even writing in my own "journal," which had transitioned from paper books to a Word document, because typing was so much faster than writing and I was always rushing somehow to "catch up" the story as if a coherent narrative needed to be maintained, began to seem pointless. Well, pointless and painful. Why dwell on emotions I didn't like to have, or worse yet, chronicle a stretch that felt bland and unremarkable? Why did I need to make some sense of order of my experience? Wasn't that just a way of avoiding the experience itself?

I silenced myself. If I thought of it, the blame would go to my freelance work, which felt unrelenting, or my fatigue, which also felt unrelenting, or just life, with someone or something else's needs constantly on the verge of neglect. Too much going on. Plus, you know, Trump.

But really there was still plenty of time to write for myself. I just declined to take it and instead looked at my phone a lot. Most days, I didn't miss the writing or even recognize that, yes, I was betraying myself. Not because everyone should do this, but because in the moments when I am restored to myself, I do this.

I composed a long farewell post here, saying that I was going to keep this blog up as a sort of archive, but that I would not be writing here anymore, and how I appreciated anyone who had ever visited this blog. 

I still appreciate anyone who has ever visited this blog. And I guess I still feel that there is some value, if only for myself, in framing my experience on a page. Why does it have to be public, though, when half the time I feel embarrassed to think anyone would actually "discover" what I had written and, god forbid, actually read it? Why, in other words, does there have to be a reader?

Sir Uncmo asked me this once. Why did I want to put personal stuff out there for people to read? He wasn't being accusatory, just curious. I couldn't come up with an answer that made sense, and still can't. 

I guess when you've spent a lot of your life feeling locked in, apart somehow from other people, there is a thrill in thinking that you might show something of yourself that you could never adequately speak, and have someone—even a stranger—nod in recognition. It's like assembling the various parts inside yourself into a different body, one that is tied to you but exists separately, and which goes out like a satellite to find other sympathetic beings, even if in the end it's just a different version of yourself a few years down the road.