My lucky.

Benny turned six last Monday. Many of you know that his tastes run a little—eccentric. Birthday shopping is always an adventure.  As opposed to last year’s passions (dinosaurs, cats, Lionel Messi, outboard engines), this year Benny loves: toll booths, praying mantises, dragons, clams, and gemstones. The “recommended picks” on my Amazon account are so confused right now.

We somehow managed to pull off the birthday in spite of all our domestic craziness these days—family festivities, chicken wings, ice cream cake, balloons, a trip to the tollbooth in the parking garage where John works, a party at Celebration Station (and I thought it was chemo that took years off my life!).

During one of the several candle-extinguishing ceremonies of last weekend Benny whispered to me that his birthday wishes had been that he could be a tollbooth operator when he gets older and that my breast would grow back someday without any cancer in it.

I guess from my end, I’m hoping for both of these things (kid with a job, no more cancer) and neither of these things (a less exhaust-filled job, no mutant body parts). But I’m glad these are his wishes. They are a very Benny version of what I would have wished for if they were my candles—the same wish I make every year: that everyone I love will find what makes them happy and that the universe will keep them safe.

Just as we were sitting down to the chicken wing birthday dinner (a lovely night, my mom strong enough to come to the table, the kids happy and excited), my phone rang. It was a Raleigh number—unfamiliar—but I knew immediately who would be on the other end.

Hi Dr. Cavanaugh, I answered after about a half ring.

Several days earlier we had gone to Duke expecting answers and a plan. Unfortunately the tumor board hadn’t met yet and, according to the Queen, Ed the Pathologist hadn’t finishing re-staining the slides. So no answers.

I’ll call you Monday right after the tumor board meets, she’d said—I promise. You don’t have to answer the phone if you don’t want to. You can always just let it go to voicemail and I’ll let you know what we’ve decided.

Clearly this woman doesn’t understand me at all.

She was on her way home from work, she told me when I answered. But she wanted to call because she’d promised.

I could picture her tucked in some cool, pristine luxury sedan gliding along I-40. Un-melted iced coffee in the cup holder. Learn to Speak Ancient Sumerian CDs whirring quietly in the player on pause.

The pathology was back and the tumors were as we’d thought—only maybe not quite as dumb as we’d hoped. The tumor board unanimously recommended that we do another four cycles of chemo—this time with Adriamycin.

And because it turns out a tenth of a millimeter margin isn’t enough to let anyone breathe easy, I will do 6.5 weeks of radiation when the chemo is done.

I was a little disappointed at first. My hair has just started growing back and it’s soft and downy and makes me feel somewhat human again. My eyebrows are coming back, too—although in an incredibly disorganized way, including a few errant eyebrows in some very unexpected places. And I just rejoined the gym! Knowing I am facing more chemo and then radiation makes me feel like I’m hurtling backwards, that I’m that many steps further away from getting back to normal—whatever that is.

But another way to look at it is that I’m being given another chance to shut this thing down. It’s what my mom’s hospice nurse calls my “lucky” (my mom’s Lucky is that opiates don’t make her constipated . . .). We have other things we can do. We don’t have to just sit back and hope for the best—quite yet. So in a weird way I’m relieved. I’m ready to put this behind me, but I’m not ready to be out of treatment, I guess.

One of my very best friends, Eliza, came to visit last week—right after the birthday madness. She went with me to Duke one day to get my latest surgical drain removed (I’m still having this nutso fluid issue, speaking of breasts growing back—and I have to go back yet again tomorrow to have another drain installed).

Eliza is a doctor, and she works many long hours at a big hospital in the Bronx. The whole time we were at Duke she kept remarking on how it was the nicest hospital she’d ever seen and how great everyone was. And because I had my own personal doctor with me, the nurse let me go home and take a shower two days earlier than normal because Eliza could re-dress the incision.

So that’s more of my Lucky—incredible friends, incredible care.

Which makes me re-think my image of serene, smooth-sailing Dr. Cavanaugh. It was 7pm on a Monday night. She was headed home after a long day discussing tumors and telling patients who wouldn’t just let their phones go to voicemail that they would need more chemo. Maybe worse. At home: her kids—two, not much older than mine, hastily crafted dinner, a mountain of emails, then maybe a glass of wine and a couple episodes of Amy Schumer to flush out the toxins of the day before getting up and doing it all again. She probably used the only quiet moments of her whole day to call me from the highway.

Nina, she’d said as we started to hang up, I just want you to know that I still feel like we’re in a good place on this.

She’s definitely my Lucky.

It is a remarkable thing to feel the hug of the world keeping you safe. It’s almost like standing out in the middle of six lanes of a chaotic highway, but cupped inside the cozy pod of a . . . tollbooth—with a trusty fan clipped to your desk and a good book on hand in case of a quiet spell.

Reconnoitering the edge.

Before he was conscripted into the family investment firm, my great-grandfather Raymond Emerson was a civil engineer and surveyor in the American West.

I never met him—he died the year I was born—but my dad remembers him as a strange, brilliant, unsettling—and later demented—man who maybe lost his mind when he was forced to return to the button-down establishment of East Coast old money.

My most concrete and only intimate experience of him is the house he designed and built in the 1930s on the side of a remote bluff on the Massachusetts coast where I have spent every summer of my life. It’s a simple house—long and sturdy and rustic with a memorable roofline and ample porches—in a dramatic, isolated spot, with a view almost as expansive as a Western skyline. It looks like it would be more at home perched on a prairie or at the edge of a canyon than staring out at sailboats and into the distant bay windows of the mansions lining Martha’s Vineyard and Woods Hole.IMG_3594

When I’m there, I often imagine him pacing out the house site on the empty hill—thinking it through in the tall grasses, his feet learning the contours and challenges of the land. The house is clearly one designed by a man who loved the outdoors above all else, and cared less for interiors. It is a portrait of his formidable grandfather, Ralph Waldo Emerson, that dominates the mantle inside.

Just yards from the house there is a drop off into the Sound that everyone in the family has come to know as a kind of defining edge—where we’ve each measured our steps in the dark. Where I’ve measured the thought that in the dark there is no bluff, only me and the noise of the bluff, the luff of the end, the bellow of something else beginning. The edge of our selves.

Even though she only started coming here when she married my dad, my mom has always said she would like to have some of her ashes spread here. Lately I am imagining this act in more detail.

The other night, in a fit of irritation and optimism, I tore out my second surgical drain, and this evening the last of the steri-strips un-gooed itself. Now, for the first time since the mastectomy I am free of all the accompanying apparati—all the not-me stuff—and I feel like I can finally get a decent sense of the landscape. I am pacing it out. I am reconnoitering the edge.

Here are my untrained surveyor’s notes:

I hadn’t really noticed before, but the scar is a stretched s-shape—kind of a meandering river—snaking about eight inches from my sternum to just under my armpit. John sees a sideways Superman-type S. I see a lazy question mark with no dot. I’m surprised and pleased with how non-linear it is—just like this whole venture.

The terrain around the scar seems to be treacherous in some stretches, flat in others, with a fine ridge that slopes through the shallow crater of my right chest. The whole area is numb, so tracing it with my fingers is the disorienting gap between the expected and the perceived. It is not lovely, exactly, but it is—to my fingers—unforgettable.

At the base of the bluff below the house, there is a rocky beach where, when I was little, my grandmother’s horse Sachem—velvet nosed, patient with flies and grandchildren—caught a leg between two large rocks, snapped it with the force of his own heaving, and had to be shot. His body was too large to move, so we covered him with a mound of rocks.

Years and storms later, farther down the beach where the bluff curls to a weedy cove, one of his bones returned to us—bleached, worn, and so massive at first I imagined it belonged to a prehistoric beast. Now it’s kept on the table near the mantle—next to the angry jaw of a bluefish, the slough of a king snake, and a brittle helix of thousands of conch eggs.

We have called in hospice for my mom.

I read Atul Gawande’s book Being Mortal in the days just following my surgery and its clarity shook all through our family like one of these summer storms. Gawande is a surgeon by trade, which makes the humility and humanity of his project to understand the relationship between medicine and approaching death all the more stunning. In the first half of the book, he takes on our attitudes and ineptitudes around aging and health care for the elderly, with a particularly blunt look at nursing home care.

The second half of the book is focused less specifically on the elderly and more on the end of life—whenever that comes. Much of his discussion revolves around the decision to stop treatment for cancers that seem to be relentlessly unbackdownable. Many of the stories he tells there—including his own father’s death from a spinal tumor—are hard to read. But what he is working toward in his difficult exploration is unquestionably beautiful: how to distill what matters most to each of us in life in order to navigate our way toward the edge of it in a meaningful and satisfying way.

And, to hold our hand as we walk toward the edge, there is hospice. Gawande is a giant fan of hospice. It turns out so am I.

It’s strange, because “hospice” is one of those words that when you say it people’s faces fall. It is a word that evokes last breaths and hushed voices. But the more I think about it, the more I’m struck by what a beautiful word it is—hospice. It IS hushed, especially at the end. But it’s comfortable and competent-sounding, too. A French word with Latin roots—very close to hospital but with so much more serenity due to those S sounds. (You see, I am growing increasingly fond of the letter S.)

It used to mean a rest house for travelers—for pilgrims, if you will. And is there anything more welcome to a weary pilgrim than rest?

Although tiny and a little frail, my mom is still very much herself these days—most days—even as the hospice nurse arrives and unpacks her blood pressure cuff and medication bag in the living room. One of the things Dr. Gawande probes in his book is how to figure out what makes a person’s life worth living in order to make the most sensible choices as the end of life approaches. One man in the book says he is willing to stay alive if he can eat chocolate ice cream and watch football on TV. He will even endure high levels of pain if he can do these things. Others are happy to be alive as long as they DON’T have to experience pain. Yet another just wants to do whatever possible to see a daughter get married.

With the help of hospice, we’ve been able to figure out that, for my mom, it’s about lucidity: she wants to be able to have a conversation. That helps us determine how long we keep pushing blood transfusions and electrolyte replacement to keep her brain as clear-thinking as possible as the myeloma takes over. And I love that—it’s so her. She’ll be investigating and delighting in the human mystery until the very end. This is not someone who is uncomfortable with the interior.

Some more surveyor’s notes:

I got the full pathology back from the surgery last week. They found the two tumors they expected in there—along with eight centimeters of non-invasive cancer (DCIS) that they didn’t really expect. The sentinel nodes were negative (this is fantastic news), and the margins were clear (also fantastic)—although only clear by a tenth of a millimeter, which doesn’t really make you breathe easy. The tumors had not shrunk in any measurable way, so unfortunately the verdict on the chemo is that it just wasn’t that effective. Boo.

What’s next still isn’t clear, and I would be lying if I were to say that this whole waiting-for-the-other-shoe-to-drop bit isn’t getting old. Dr. Cavanaugh wanted to do further pathology (I’m not really sure what exactly that means) and bring my case in front of a tumor board for input. I’m now scheduled to see her this Wednesday, and I suppose from there we’ll get a sense of the new landscape and what to expect as we pace about in the tall grass.

Speaking of which: Tracing my fingers again and again over the scar, I’ve realized that something is familiar. It isn’t a Superman S—or a question mark, or even a river. It’s a path—a path I know pretty well. It’s the one that starts in the weedy cove down by the boathouse, weaves its way past the cat briar and beach roses and starts to climb up the hill through grass thick with berries and ticks and poison ivy, curving gently this way and that up the bluff to the house where I can see just now my mother is gliding out of sight, stepping from the southwest porch in through the sliding door.