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.

No comments :

Post a Comment

Note: Only a member of this blog may post a comment.