Fourth River (by JD)

When my wife was dying, the last thing I wanted to think about was my next relationship. The very idea baffled and repelled me. It wasn’t that I thought I’d live out my widowhood lonely and celibate—I could recognize even in my anxiety and grief that I would want someone to live, work, and play with for the remainder of my life. It just didn’t make sense to me to think about that phase before Nina was gone. I couldn’t even bring it into focus. I wanted all my available energy focused on the time I had left with her, which felt like it was constantly slipping away already.

In reality we had plenty of time to ruminate. Nina’s cancer became metastatic over a year before she died. With triple negative breast cancer, that’s a pretty sure terminal prognosis. So we had fourteen months to ponder both Nina’s early mortality itself and the aftermath for me and our kids. That’s way too short a time for the rest of a life, but a really long time to think about dying young.

Nina was much more proactive in thinking about what came next. I remember the first time she brought it up. “Please promise me that you’re going to be open to finding other relationships after I die,” she said through tears not long after her surgery for the broken vertebra that announced the cancer had spread for the first time, “you know you’ll do SO MUCH better in a relationship. I can’t bear the thought of you being alone. So I want you to promise me.” I protested gently that I couldn’t even imagine what I would do after she was gone, and didn’t want to focus on it. But of course I made the promise—who refuses a promise to a dying woman, let alone a dying woman who’s the emotional center of your whole world?

Nina repeated that conversation several times. She wanted reassurance my intentions were true and clear, that I had actually thought about my life after her death. She knew me—knew that if my mind wasn’t bent deliberately on something, it would wind up neglected, if not forgotten. So she made me promise and re-promise: she asked me to say that I would not only be in another relationship, but get married again. And she insisted that I not have a vasectomy when she was getting ready to do a drug trial that required either that or an IUD for her. “You never know what you might want in the future,” she insisted over my protests that I wasn’t even sure I wanted the kids we already had.

Nina was thinking actively about life for me and our boys until nearly the time she died, and not just my future intimate partnerships. In a thousand small ways, it occurred to her to recommend little things she thought might be helpful to me. She would remind me about friends, cousins, neighbors, or colleagues who would be there for all of us when she’d died, framing and reframing relationships for me in ways I’d likely have neglected, so that the channels of support were reassuringly clear. While we were in hospice she got an email from Lucy Kalanithi. I was only dimly aware of Lucy, but Nina reminded me she knew Lucy in her capacity as the widow of author and neurosurgeon Paul Kalanithi, whose book on his own death from cancer—When Breath Becomes Air—Nina read and loved when it came out the year before (she mentions it along with Atul Guwande’s Being Mortal and a few others in The Bright Hour as part of an ongoing conversation she saw her own manuscript engaging in).

Lucy had tweeted about Nina’s article in the NYT Modern Love column when it came out, had been an early reader of Nina’s manuscript, and a big supporter—ultimately agreeing to write a blurb for the book. But this email message was brief and personal. It simply read: “nina, your writing is extraordinary. (in my opinion, that means so is your soul). I’m beaming you love from my whole being. your forever fan, lucy.”

I read it aloud to Nina, who was then only 48 hours from dying. She was warmed by the words as I read, because although sent from a person she’d never met, they’d had an important connection. Lucy’s early support meant a great deal to Nina, bolstering her confidence in particular about Nina’s portrayal of doctors. “You know,” Nina told me almost offhandedly, “Lucy is a person you should really be in touch with. She’s been through the whole gauntlet you’re about to face, and she seems like a person with real insight and terrific amounts of empathy.” Then Nina dictated the gist of a reply to Lucy, and we decided I would introduce myself to ask if I might ask if I could contact Lucy for advice at some indeterminate point after Nina died when grief and loss were manifest.

I don’t remember all the details of the days following Nina’s last breath, except that I felt both completely at sea and totally possessed with the need to try to stay on top of things: the memorial service, Nina’s manuscript, the kids, my house. All. The. Things. In the small hours of a night not long after Nina died I was awake with all facets of my life gnawing at me. Not even grief or pain—it was really too soon to even gauge all that. More the practical realities of a life whose very structure had just been blown apart.

I had so many questions. So little orientation. How should I cope with the trauma of Nina’s actual death? It had undone me, but I had no idea whether it was “normal,” having witnessed a grand total of zero other people die. What would I do with all our friends, who were nearly all couples, now that I was both unwillingly single and a living reminder of early mortality and pain? How long could I or should I take leave from work to make sure I am ready when I go back? How will I have enough time to take care of my family and myself? Where will I seek or find intimacy, given that I have been married since I was in my early twenties and have never even seen an actual dating app? Do I need to buy more dogs? Cats? A tortoise (longevity was looming large as a factor at that point)? How would I keep myself upright as the successive waves of grief hit? How much help would I need making my household function, and for how long? How did I find a nanny or babysitter who would understand our situation and be able to handle it? SO MANY QUESTIONS. So little sense of normalcy or, as it turned out, propriety.

I took all these questions and I did what any normal, emotionally devastated, sleep-deprived, bereaved dude would do: I put them all (and several more) in a several-page email and sent them to Lucy Kalanithi, whom I’d never met, pleading for survival advice and social forgiveness. Nina had told me that this might be a good person to ask after she died. She didn’t say I had to wait a certain TIME after she died. She just said “good resource.” And at that point, I may have been taking things VERY literally. My email included boldfaced headings for the various sections of my concerns: “Friends,” “Nina’s Death,” “Work,” “Coping with Grief,” and perhaps most ironically given the tenor and social anormalcy of the email it was contained in “On Not Going Crazy.”

Lucy somehow read this and was foolish enough not to run screaming in the opposite direction. She not only answered my questions as best she could, she sought input from colleagues and sent me their feedback as well. She took me seriously. She validated my concerns. She was open, kind, and available.

But then we did something that seemed unexpected: We began a regular, intense, personal correspondence about the vagaries of loss, grief, and loneliness. Nina had directed me to contact Lucy. But I don’t think she foresaw me prying Lucy away from her life to carry on an epistolary relationship that quickly transformed from one sided (mine) and riven with neediness (mine) to a genuinely mutual exchange.

Lucy and I wrote—often multiple times a day—about everything: our relationships with our in-laws (both hugely important); what kinds of things we could do to preserve the memory of our dead spouses for our kids—her daughter whose brief 8 months with her dad would all be pre-memory and my kids, who would have their precious few years of memories of their mom cut drastically by their developmental ages at her death. Lucy told me to join the Hot Young Widows Club, a private Facebook group for people who have lost a partner at a younger than normal age, and the site proved to be a major source of support for me, and a wonderful joint bonding experience. We joked that the catalog of our correspondence was a whole other book: When Breath Becomes the Bright Hour, and that it could be a sequel to both our spouses’ work, if only it weren’t so unbelievably sappy and implausible, a Rom-Com.

The breathtaking thing, in retrospect, was not just the intensity or intimacy of the correspondence—though we were total strangers talking about perhaps our most private and painful emotions. It was the sheer volume. It was not until Lucy and I started writing that I realized Gmail rolls you over into a new thread when you hit 100. By the time we actually met in person (at which point we had communicated only by email) during a work trip Lucy made to North Carolina, we had lapped the century mark multiple times and begun new threads to keep from getting lost in our own back and forth.

So maybe it should have been obvious that we had good chemistry. But in our circumstances, there were many obvious reasons not think of ourselves in that light. Lucy was further along in her grieving than me—the two-year anniversary of Paul’s death fell shortly after Nina died. But we were both freshly out of the only relationships we’d had in decades—nearly thirty years of marriage collectively. From deep in the throes of grief, preoccupied with surveying the wreckage of my lost life (and also of our house, because right after Nina died I also made the decision to go forward with a renovation we had planned for our home—it worked out but I don’t recommend this timing?), it didn’t even occur to me that I might fall in love again. Until it happened.

Science, man. Apparently, chemistry don’t care about your circumstances. It’s just molecules making molecules. Ineluctable. Mysterious. Who can even explain it (other than maybe a doctor or scientist)? That’s how I feel about trying to describe meeting Lucy in person for the first time. Maybe the best I can say is that when we met in person it was clear there was no OTHER impediment to the mutual attraction than our circumstances and loss? The chemistry was pretty hard to miss, even for a humanities dude.

The ostensible reason for us getting together was that we were scheduled to do a joint book event in San Francisco for the launch of The Bright Hour in June. But we could both tell we had more to talk about than logistics. After meeting, we’d abandoned our self-imposed email-only relationship medium and begun texting (out of necessity! For planning purposes! Not because we were SUPER hot for one another. That wasn’t appropriate!). In San Francisco we did two events in one day—one out in Marin County and one in the City—and Lucy squired me around to both of them. So we got to spend the whole day together. We had lunch in Sausalito, drove into San Francisco. Not at all propitious for budding love. Ho hum.

We dispensed with any pretense that we were just two people sharing the experience of joint loss, or supporting one another through friendship. The chemistry was beyond palpable. It was intense. And it was building on what was now a fairly deep epistolary relationship in which we had already cut straight to the beating heart of both our lives. It was more than feeding a fire with gasoline. Just as intense as it was emotionally connected. The heat of the relationship from the very start matched the light we’d already managed to shine on all the tangled, troubled recesses of our grieving selves.

Ok. I’m running out of flame imagery. But how do you describe the feeling of falling in love, after centuries of poets and scores of Modern Love columns have already done it more eloquently? How do you even begin to describe that feeling at the same time as the overwhelming grief of losing the love of your life?

In Pittsburgh, where I grew up, three famous rivers come together—the meeting of the Allegheny and the Monongahela to form the Ohio. But Pittsburghers know there’s also a fourth river, an underground stream that no one sees but that actually feeds the fountain at Point Park, the triangle of land that marks the Confluence. I always liked to imagine it was a coursing channel when I was a kid. I loved mythology and it was a weird mix of magical and abysmal—like the River Styx or Lethe was not only running right through Western PA, but spraying up through the Point Park Fountain, one of our most prominent landmarks and a place I played regularly.

But I had the hardest time picturing the vector of the flow (maybe because it turned out—thanks, stupid earth sciences—that it’s not an underground river, technically, but “just” an aquifer, part of the Wisconsin Glacial Flow, and not a river at all): was it crosswise to the aboveground rivers? Diagonal? My favorite version had it running upstream and completely opposite, like a parallel universe’s version of our known rivers. The tension in my imagined watercourses resonates now. Both levels of feeling are inescapably part of me and I crave immersion in them in different, but important ways.

See? It’s hard to describe. Maybe the problem with this metaphor is that I’ve never been a strong swimmer. Nina used to say that I drink as much water as I displaced when I swam (which to be clear is happily not often). But, so far at least, Lucy and I have been able to stay abreast of each other in our collective tumult—the part due to fortune and the parts we crafted deliberately.

The kids have met and been kids together. We’re meeting one another’s families—both in-laws and blood relations. We have already begun to integrate our lives in a way that even today seems so improbable that we stop occasionally and ask one another if we can believe it’s actually happening. Before they died, both our spouses bid us in strong, unflinching terms to promise that we would have other relationships, get married again even. And they not only said this to us, they wrote it in their best-selling books, along with a thousand other things, so everyone knows!

Now we are in actual life, the real aftermath, not far removed from those conversations with our respective dying people, finding and forging the relationship they enjoined in a bizarrely best case scenario sort of way: by having a relationship with another widowed spouse of an author who wrote a book published posthumously about dying young. One of whose widows incidentally also wrote a blurb for the others’ book. And then helped promote it. Quizzical doesn’t begin to describe our looks when we ponder it, mouths agape. Lucy’s family has a catchphrase that’s come to be our only way of capturing the whole phenomenon: “weirder crap has happened.”

The other day Lucy’s daughter, who’s three but unsurprisingly precocious, was ruminating on family in the way that only startlingly intelligent three year olds can. She said, on the subject of the proto-familial structure we were inhabiting that weekend, “I make Benny and Freddy three.” From her toddler, “I am the center of the known universe” vantage, she articulated our whole project. Taking all these disparate parts and putting them together in some contiguous, cumulative whole bigger than the sum of its odd parts: partners, kids, grandparents, siblings, cousins, aunts, uncles, friends. Not just two families, but EXTENDED families, both of which already have broadly defined and inclusive definitions of “family” and strong existing family bonds.

The resulting family tree may grow somewhat gnarled and ungainly, but it feels filled with the very kind of promise our spouses hoped we might find after they died. The idea of multiplying the number of close relationships our kids have not only makes me excited for Lucy and me in the here and now, it is a no doubter that Nina would love and approve—she whose primary focus was creating and tending to close relationships. I imagine too that the blending of our worlds would be a continuing fulfillment of Paul’s wish for Lucy during his illness—that everyone else take care of her as she tended to his remaining mortal needs. Even more people to take care of her can’t hurt, right?

We are trying to allow ourselves to flow freely without too much restraint in both directions, while at the same time tending very carefully to our navigation. We are trying to honor lost love while embracing a new one. We are wary of the potential for hurt and harm, but even more overwhelmed by the opportunity for multiplying love and loving relationships. We are a little crazy, always a little at risk, and feeling very grateful and mournful for the evanescence of all of it.

Seventeen

nerjadwedding

I’m hijacking Nina’s blog today. Sorry. But it’s for a good cause. You’ll see. The writing won’t be nearly up to snuff, but the occasion is sort of a valid excuse?

So today is my seventeenth wedding anniversary. But it’s the first time I’ve celebrated one without a wife. Nina made it almost exactly 16.5 years into our marriage, which we’d both envisioned lasting long into our dotage (which, yes, you could argue is already nascent in my case, but was not in hers!). Today I’ll mark the occasion by picking the kids up at Camp Kesem, the same wonderful place where they went for their first overnight camp last summer. I remember it felt almost criminally liberating leaving the boys, and to be home all week without them. Nina and I kept having these sudden “realizations” where we’d panic that we didn’t know where the kids were, then remember we’d left them safe and sound in the woodlands of Virginia, three hours away, with a bunch of college kids, whom the kids liked better than us anyhow. Phew.

That occasional panic lasted about 24 hours. Then we got REAL used to having a kid free week. Actually, Nina was in the throes of an intensive round of radiation, which started two days before our anniversary. And the anniversary was only two days before we took the kids off to camp, so I’m pretty sure it went more or less uncelebrated. But by the time the kids were done with camp Nina was too radiation sick to travel, so I got the boys by myself then, too.

Just like last year, we will head up to Naushon—Nina’s communal family spot off Cape Cod–a few days after the boys get home from camp. This year that’s just when our time up there starts. Last year we had to wait a few days for Nina to be well enough to travel. I remember during our stay we talked about how many more times we’d get to enjoy the house up there, its breathtaking views and familiar structures—the halls of the house where Nina’s father played with his brothers and sister, where Nina and Charlie grew up knowing every knot hole and creaky plank, and where our two boys have been coming since before they knew there was any such thing as vacation houses, extended family, motorboats, or cancer. We were aware of the ticking of the clock, but I think we both imagined at least one more trip.

This summer we’re not just going to Monsod without Nina—which would be odd enough—we’re going to drive up there with her ashes in a box, and we’re going to commit them to the ground on Nonamesset Island. It’s a stunning place. The burial will be marked by an engraved stone, on a beautiful spot where Nina’s cousin Alex—who died a few years back at about the same age Nina was—is buried. Nina’s aunt and uncle picked Alex’s burial ground superlatively well: in full view of Monsod, her favorite place on the planet, and also Martha’s Vineyard, the Sound, and Woods Hole. Pete and I picked out stones for both Nina and Jan, so they’ll both be making their last trips to Naushon, as it were. The longest funeral procession ever. All the way up I-95 from North Carolina, and in Jan’s case, two years in the making.

But before all that, gotta get though today: our seventeenth anniversary. Anniversaries are funny. We celebrate the wedding, but not the start of the relationship for some reason. Nina and I actually were together starting in June of 1999. And we met the summer before that. So it’s really our eighteenth or nineteenth anniversary, by gum!

Still, there are some conventions that are fun to follow, however flawed. For a while I used to use the “traditional” list of anniversary gift materials for Nina’s presents. We weren’t traditional. But I liked the list as a sort of starting point, and it became a fun challenge to find a good gift that actually matched the material for that year: for our 10th I got tin jewelry from Wales, for our 12th a silk jewelry travel pouch, and for our 15th crystal champagne glasses. It was a little silly and frivolous, I guess. But it also gave some tradition and structure to anniversary celebrations, which for us were not giant to-dos. We never did anything more than go out for a nice dinner.

Just for kicks I looked up seventeen on the traditional list and it said: “Furniture.” I don’t think anyone traditionally gave “Furniture.” In fact, I don’t think anyone traditionally celebrated the seventeenth anniversary, so “Furniture” is probably just a furniture industry ruse cooked up down I-85 in High Point, NC to boost sales. But, as it happens, I am executing a plan Nina and I made for an extensive remodel of our house, which includes a new master bedroom suite, two-car garage, newly remodeled family room, new half bath, and a “bonus” room over the garage, much of which will be fairly empty. So I will, without question, be purchasing “Furniture” in great abundance in this the year of our seventeenth anniversary.

Like I said, we never really made that much of anniversaries. But as this one approached, I really felt the loss more acutely. I can’t tell if it’s just the passage of additional time—nearly six months have passed since Nina died now—or the gradual return of life to its circadian rhythms. Not “normal,” whatever fictive thing that is or was, but normalized. Regular. Measured in more predictable emotional and quotidian metes and bounds. But that feels odd. Upsetting. Not because I want life to stand still because Nina died. But the passing of new epochs of our lives brings a kind of drift—not distance exactly, because I can still summon her immanence with photos, memories, or the company of friends and family who knew her well. But a persistent tidal flux that, though it keeps me more or less in the same area, nearly remakes the whole landscape each time it rises and falls. New detritus washed up around me every time, scattered in different places. And even though the landscape looks basically familiar from even ten or twenty yards out to sea, when I examine it closely, I realize it’s totally changed.

I’d prefer this ebb and flow wash me as smooth as beach glass (a great love for collecting which Nina learned from her father and passed on to her children). But I keep finding I’m all jagged edges, even though I’m constantly immersed in the salty tumult. Maybe I’m a beer bottle made from tempered glass? Or safety glass blown out of a warship during a great battle? Or maybe I’m just pushing this metaphor way beyond the flexural strength of any known form of glass or language?

The point is, I miss Nina. I miss her smile, her voice, her touch, of course. But I also miss her equal zeal for socializing and cancelling plans to cuddle in our bed and eat takeout. I miss her unbelievable gift for relationships, for not being afraid to confront the really difficult parts of being a wife, mother, daughter, sister, or friend, in order to preserve the very best bits, even if it hurt sometimes. I miss her fearlessness to try to do whatever she thought was best, even when she was afraid. I miss her more today than other days, I suppose. But I miss her achingly all the time.

The ardor over her book, the immediacy and shock of grief, and the incredible support I’ve had gave me momentum for several months after she died. But now on our first anniversary since Nina’s death, I feel a million miles from coping. I’m not a terrible parent, but I’m not the parent I’d be alongside Nina. And I’m not awful company, either. You know, for a guy who’s grieving and wasn’t all that much fun before the grief. But I was always a whole lot better at parties and get-togethers with Nina along. I’m going to keep on parenting my kids (yikes!) and hanging out with my peeps (sorry, friends and family of Nina, contract not dissolved by death of one partner!), but we were a team, a unit. And today was meant to be a celebration of that. A casual celebration at our favorite restaurant, where I’d probably not have been able to bring a whole piece of “Furniture” to present to her as a gift. I bet picking out “Furniture” for our newly remodeled house would have been a pretty slick present anyhow. So I’ll just do that. And keep missing Nina. Happy seventeenth, NER: the “Furniture” anniversary, which is maybe appropriate, as long as all the “Furniture” remains unfinished.

All the links for The Bright Hour

The Bright Hour has had some wonderful press attention. Nina’s publisher has kept a wonderful cache of links and information, which I linked to here. But I thought I would also make all the various media available right here on the blog with direct individual links where available. I hope these all work! And thanks to Sarah Reidy at Simon & Schuster for tirelessly cataloging these!!

— xojd

NATIONAL TV

JUN 29    TODAY SHOW / NBC / Emma Straub Summer Reads pick / LINK

 

NATIONAL PRINT

MAR 30    WASHINGTON POST / Roundup / Books We Can’t Wait To Read This Spring / LINK

APR 1    Library Journal / Review / STARRED Review

APR 15    Booklist / Review

APR 24    Publishers Weekly / Review / STARRED Review / LINK

MAY 1    Kirkus Reviews / Review / STARRED Review / LINK

JUN 1    BOOKPAGE / Review

JUN 1    REAL SIMPLE / Review / The Short List

JUN 2    WASHINGTON POST / Feature / Style Section Feature (Interview / Review) / LINK

JUN 7    Wall Street Journal / Review / LINK

JUN 8    WASHINGTON POST BOOK WORLD / Roundup / 37 Books We’ve Loved So Far in 2017 / LINK

JUN 12    PEOPLE / Review / Book of the Week

JUN 12    New York Magazine / Roundup / Approval Matrix: Highbrow Brilliant / LINK

JUN 18    NEW YORK TIMES BOOK REVIEW / Roundup / LINK

JUN 19    ENTERTAINMENT WEEKLY / Roundup / Best New Books

JUN 23    ENTERTAINMENT WEEKLY / Roundup / Best New Books

JUN 24    USA Today / Roundup / Weekend Picks for Book Lovers / LINK

JUN 25    NEW YORK TIMES BOOK REVIEW / Roundup / Editor’s Choice / LINK

JUL 1    Glamour / Review / The Six Juiciest Summer Reads

JUL 1    O MAGAZINE / Feature

JUL 1    Redbook / Roundup / Summer Reads

 

LOCAL RADIO

JUN 9    Raleigh-Durham, NC / WUNC-FM / The State of Things / Taped interview with John / LINK

 

LOCAL PRINT

MAY 16    Seattle Times / Roundup / Summer Reading Recommendations from Local Literary Celebrities / LINK

MAY 19    ATLANTA JOURNAL CONSTITUTION / Roundup / 12 of the best and brightest Southern books for summer 2017 / LINK

JUN 1    Boston Globe / Review / LINK

JUN 3    GREENSBORO NEWS & RECORD / Feature / LINK

JUN 4    GREENSBORO NEWS & RECORD / Event Listing / LINK

JUN 7    SAN FRANCISCO EXAMINER / Event Listing / LINK

JUN 11    Detroit Free Press / Roundup / Summer Reads / LINK

JUN 18    NEW YORK POST / Roundup / Required Reading / LINK

JUN 18    Virginian Pilot / Roundup / Books to carry you through the summer / LINK

JUL 2    ATLANTA JOURNAL CONSTITUTION / Review / LINK

JUL 2    Dayton Daily News / Review / Book Nook column / LINK

JUL 2    CHARLOTTE OBSERVER / Review / Triangle Reader Recommends / Reader’s Pick / LINK

 

ONLINE

MAR 16    Publishers Weekly / Round-up / On Sale Calendar: June 2017 / LINK

MAR 21    BOOKPAGE BLOG / THE BOOKCASE / Round-up / 2017 Preview: Most Anticipated Memoirs / LINK

MAR 26    SheKnows / Round-up / “10 Moms Who Embraced Their Passions, Inspired Change and Wrote About It” / LINK

MAR 26    OZY / Round-up / Katie Couric Guest Curated Newsletter / Recommends Book and Modern Love / LINK

MAR 26    ADWEEK / Event Mention / Item on Katie Couric OZY recommendation / LINK

APR 6    DENVER POST / Round-up / Reposted WaPo Spring Books Roundup / LINK

MAY 8    Glamour / Round-up / New Books by Women You’re Guaranteed to Love This Summer / LINK

MAY 8    Huffington Post / Round-up / Picked up Glamour.com Summer Reads / LINK

MAY 9    A Design So Vast / Review / LINK

MAY 12    BOOKRIOT.COM / Round-up / 100 Must-Read Books on Pregnancy, Childbirth, and Parenthood / LINK

MAY 23    Literary Hub (lithub.com) / Original Piece / Adapted Eulogy by Tita Ramirez / LINK

MAY 23    Lit Hub Daily / Round-up / Link in Daily Newsletter / LINK

MAY 25    Read it Forward / Round-up / Best of May / LINK

MAY 27    Literary Hub (lithub.com) / Round-up / Link to Tita’s piece in Weekly Newsletter

MAY 30    Bookish / Round-up / Summer Preview / LINK

JUN 1    Washington Post / Interview / Full transcript of Nina’s Interview (online only) / LINK

JUN 1    BUSINESS INSIDER / Round-up / Round up of Amazon Best of Picks / LINK

JUN 2    InStyle / Round-up / June Book Recommendations / LINK

JUN 2    Everything Zoomer / Round-up / LINK

JUN 4    Love in the Time of Cancer / Review / LINK

JUN 5    USA Today / Review / 4 out of 4 Stars / LINK

JUN 5    Brit + Co / Round-up / 10 Hot New Reads to Pick Up in June / LINK

JUN 5    BITCH MAGAZINE / Round-up / 17 BOOKS YOU SHOULD READ IN JUNE / LINK

JUN 6    Omnivoracious / Interview / Interview with Marysue Rucci / LINK

JUN 6    Omnivoracious / Round-up / Post of Best of the Month selections / LINK

JUN 8    Vulture / Round-up / 7 New Books You Need to Read This June / LINK

JUN 8    Bookreporter.com / Review / LINK

JUN 9    Katie Couric / Yahoo / Interview / Interview with John / LINK

JUN 9    WRITER’S BONE / Round-up / 20 Books That Should Be On Your Radar: June 2017/ LINK

JUN 9    Literary Hub (lithub.com) / Round-up / Best Reviewed Books of the Week / LINK

JUN 9    WLRN Online / Round-up / Friday Reads / LINK

JUN 15    SHELF AWARENESS PRO / Feature / Book Trailer of the Day / LINK

JUN 16    Bookreporter.com / Mention / Weekly Update Newsletter / Item of “Bookreporter Bets On” Pick / LINK

JUN 16    Bookreporter.com / Review / “Bookreporter Bets On” / LINK

JUN 16    Omnivoracious / Round-up / Best Biographies and Memoirs of June / LINK

JUN 19    Levo.com / Round-up / 20 Books That Will Breathe Life Into Your Summer / LINK

JUN 19    Cup of Jo / Original Piece / Piece by John / LINK

JUN 21    STAT NEWS / Round-up / 35 best health and science books to read this summer / LINK

JUN 22    Cup of Jo / Round-up / Link to John’s piece in weekly newsletter

JUN 22    Signature Reads / Review / 3 Rich Reads to Take Into Your Summer / LINK

JUN 22    Greensboro News & Record / Feature Blog Post / LINK

JUN 22    Health.com / Round-up / 8 Beach Reads Our Editors Couldn’t Put Down / LINK

JUN 22    Eye Level / Review / Issue Four: Currently Reading / LINK

JUN 23    Sojourners / Feature / “What ‘The Bright Hour’ Can Teach Us About Living and Dying” / LINK

JUN 23    Katie Couric’s FYI Newsletter / Round-up / Link to John’s Yahoo Interview

JUN 26    NBCC’s Critical Mass / Round-up / LINK

JUN 27    UNCG.edu / Feature / Piece on success of TBH / LINK

JUN 29    NPR.ORG / Round-up / “A Powerful Intersection: Pairing Memoir And Science Writing” / LINK

JUN 30    The Digest Online / Round-up / Books to Read in Summer ‘17 / LINK

JUN 30    Another Mother Runner Podcast / Round-up / Summer Reads podcast / LINK

JUL 2    Crave / Round-up / 6 Good Books to Buy for the Women in Your Life / LINK

JUL 4    Medium / Round-up / Top Books in 2017 (So Far) / LINK

JUL 5    Slate / Review / LINK

JUL 5    Glitter Guide / Round-up / July’s Must Read List / LINK

JUL 6    Intima / Review / LINK

JUL 6    Intima / Review / LINK

JUL 7    Girls Night In / Round-up / Weekly Newsletter / 4 things to do during a night in

 

Pull Quotes

“So beautifully written. She really makes you want to live every single day.” [Emma Straub]
TODAY SHOW

“In this memoir, published posthumously, Nina Riggs asks: How do you make life meaningful when you know your time is limited? With humor and honesty, The Bright Hour: A Memoir of Living and Dying chronicles Riggs’s diagnosis of metastatic breast cancer and the moments shared with her school-age sons and her husband before her death at age 39.”—The Short List: Five Books That Won’t Disappoint
REAL SIMPLE

“Profound and poignant…I put down The Bright Hour a slightly different, and better, person – unbearably sad and also feeling, as Riggs did, ‘the hug of the world.'”
O MAGAZINE

“The book will make you feel joy. Riggs writes beautifully about her family, her love of literature and nature, of beach vacations and watching her son learn to ride a bike…“The Bright Hour” is a stunning work, a heart-rending meditation on life — not just how to appreciate it while you’re living it, but how to embrace its end, too. It is this year’s “When Breath Becomes Air”…Riggs barely pauses to pity herself or her family. She trudges forward with the kind of strength and humor that make reading her account a bittersweet pleasure. Her wit is sharp and her observations lyrical.”
WASHINGTON POST

“Inspired by the unforgettable New York Times Modern Love column, this memoir by a young mother with terminal cancer is touching and wickedly funny.”
Glamour

“Riggs is to be admired for candidly sharing the battle she fights, and for her no-holds-barred documentation of all the depleting minutiae of such a fight. Throughout, she sprinkles in the philosophies of life she ponders and the gallows humor that helps her cope…[it] will be appreciated for its raw honesty.”
Booklist

“The author writes with a seamless flow and an honest, heartfelt tone; the narrative often glides into passages of gorgeous, rhythmic prose leaving no doubt about Riggs’ immense talent for poetic language. She also retains a dry, witty sense of humor throughout despite the sadness of enduring chemotherapy and its side effects, navigating advanced medical and legal directives, a mastectomy, and an incremental decline in her health…Riggs’ indefatigable spirit is the true heroine in this story of life and loss; even in her darkest moments, she writes, “the beautiful, vibrant, living world goes on.” A luminous, heartbreaking symphony of wit, wisdom, pain, parenting, and perseverance against insurmountable odds.” [STARRED]
Kirkus Reviews

“Poet Nina Riggs was only 37, the mother of two young sons, when she was diagnosed with breast cancer. Within a year she had lost her mother to multiple myeloma—and learned her own cancer was terminal as well. Riggs died last February, leaving behind this deeply affecting memoir, a simultaneously heartbreaking and funny account of living with loss and the specter of death. As she lyrically, unflinchingly details her reality, she finds beauty and truth that comfort even amid the crushing sadness.”
PEOPLE

“[Riggs] reminds us that we are all in this world until we leave it; the gallows humor surrounding her mother’s funeral will make readers howl guiltily but appreciatively. Whether confronting disease or not, everyone should read this beautifully crafted book as it imbues life and loved ones with a particularly transcendent glow.” [STARRED]
Library Journal

“Moving and insightful…Despite the profound sadness of her situation, Riggs writes with humor; the memoir is rife with witty one-liners and musings on the joys and challenges of mothering and observations on the importance of loving relationships…n this tender memoir Riggs displays a keen awareness of and reverence for all the moments of life—both the light, and the dark, “the cruel, and the beautiful.””[STARRED]
Publishers Weekly

“With “The Bright Hour,” Riggs leaves behind a literary legacy that captures both her incredible talent and her unwavering love for her family…Her lyrical, honest prose immerses the reader in her world — you feel the fear, the despair, the joy…Riggs perfectly captures the strange, sometimes otherworldly feeling experience of cancer treatment…But though one might expect a tome of sadness and despair from a writer with only months left to live, Riggs fills her memoir with vivid, messy, beautiful life. The book illustrates how Riggs’ sense of humor never falters…Riggs seamlessly integrates both Emerson’s and Montaigne’s thoughts on life, death and health, adding a richness to her own experience.”
GREENSBORO NEWS & RECORD

“Through this warmhearted memoir, Riggs writes her way to accepting her own death and the uncertainty that follows it. The Bright Hour is an introspective, well-considered tribute to life. As Riggs’ famed ancestor Emerson writes, “That is morning; to cease for a bright hour to be a prisoner of this sickly body and to become as large as the World.””
BOOKPAGE

“Wry and tender.”
ATLANTA JOURNAL CONSTITUTION

“A vivid, immediate dispatch from the front lines of mortality and a record of a life by someone who wasn’t done living yet. But there is nothing maudlin about it…her warm portraits of each of [the members of her closest circle] are a large part of the book’s emotional power. So is something we don’t notice fully until it’s gone: the strength and clarity of Riggs’s voice, which never faded on the page, and which we won’t get to hear again.”
Boston Globe

“The antithesis of grim: an irreverent and poignant Baedeker through the country of illness.”
Wall Street Journal

“Written in the final two years of her life, a mother’s poignant memoir about her life, family and last days.”
WASHINGTON POST BOOK WORLD

“This gorgeous chronicle of the last year of her life – brimming with seemingly mundane details about parenting, buying a couch, getting a puppy – is a gentle reminder to cherish each day.” [Best New Books]
ENTERTAINMENT WEEKLY

“Moving and often very funny…You can read a multitude of books about how to die, but Riggs, a dying woman, will show you how to live.”
NEW YORK TIMES BOOK REVIEW

Her observations about cancer are frank and unsentimental…They are also tart and hilarious…Like the bestselling “When Breath Becomes Air,” the work she left behind is a beautiful testament to the quiet magic of everyday life and making the most of the time we are given, whether it’s spent taking last-minute trips to Paris, wallpapering the mudroom, or reveling in a newly purchased couch.”
NEW YORK POST

“That a writer with only months to live could carve out the time and energy to chronicle her experience of terminal cancer is an impressive feat. That a writer could accomplish this with such exuberant prose as Nina Riggs does in her debut memoir is revelatory…captures vivid, dynamic moments, searing truths, bitter ironies and every delicate emotion in between… “The Bright Hour” equals “Breath” in clarity, nuance and artistry…Ultimately, this is Riggs’ magic. She has produced a work about dying that evokes whimsy and joy, one that sublimely affirms that the inevitability of death carries with it its own kind of light and grace.”
ATLANTA JOURNAL CONSTITUTION

“This moving and often very funny memoir of Riggs’s experience with metastatic breast cancer is bromide-free and honest. She died shortly after completing it, but her words will show you how to live.”
NEW YORK TIMES BOOK REVIEW

“As [Riggs] accepted her fate with magnificent poise, my heart was trembling. A sublime transformation to witness.”
Dayton Daily News

“A beautiful and poetic set of essays about a woman’s life as a young mother with terminal cancer. It could have focused largely on the incredible sadness of a family dealing with terminal cancer, but instead it was uplifting and filled with light, humor and peace, and the joys in everyday living. I want to re-read it to gain more of the wisdom of this incredible woman. I cannot recommend it highly enough, if you love memoirs which I do.”
CHARLOTTE OBSERVER

“An amazing book.”- Katie Couric
OZY

“Disarmingly raw and emotionally captivating with every word, The Bright Hour will inspire every mama to reach for the stars today and every day.”
SheKnows

“Riveting.”
BOOKPAGE BLOG / THE BOOKCASE

“Author Nina Riggs was 37, the mother of two young sons, and married to her best friend when she was diagnosed with terminal breast cancer. This is the story of how she faced the unthinkable with humanity and most of all with love.”
Glamour

“Full of vibrant life and vivid details, written in clear, often-humorous prose…This book is beautiful. Walk, don’t run to order and read it…I urge you to read this gorgeous book, and plead that you not be afraid of it. Nine is a once in a lifetime person, and though I regret not knowing her while she lived, I’m hugely grateful that I read her words, that she put them down, and that I experienced, however briefly, the world through her eyes.”
A Design So Vast

“A beautiful gift…A heartrending reminder of life’s worthiness from the descendent of Ralph Waldo Emerson, this is a beautiful time-capsule of Riggs’ experiences.”
Read it Forward

“There are books that speak to our inner lives and make us feel more human. There are books that draw us out of ourselves and carry us somewhere new. The Bright Hour manages both. Riggs was just 37 when doctors discovered a small spot of cancer. By turns humorous and heartbreaking, she faces the unthinkable with remarkable grace. One might surmise “A Memoir of Living and Dying” will evoke tears. But Riggs’ legacy is a gift for us all: the pervasiveness of light, the preciousness of days, and — as we suspect — how the meaning of life might be love.” [Caroline Donofrio]
Eye Level

“Anyone who read and enjoyed Paul Kalanathi’s When Breath Becomes Air will likely enjoy this (to the extent one can enjoy the story of someone’s demise). This book poses the same unanswerable questions that Kalanathi’s does. Riggs, who passed away in February 2017 from cancer, endeavors to answer those questions with so with so much levity, warmth, honesty, and lyricism that it almost is enjoyable (even when she’s telling her children that she’s dying).”
WRITER’S BONE

“Poignant…For anyone looking for wise words on the subject of cancer—this is your book, but it also contains so much more. Riggs was the great-great-great-granddaughter of Ralph Waldo Emerson, and there is a running theme throughout the book about the huge importance of art and the humanity it can impart.”
Bookish

“As a poet she composed THE BRIGHT HOUR with delicacy, love of language, full awareness, and a realism that almost hurts to read and absorb…A family history, a personal memoir, and a roadmap for others to follow, THE BRIGHT HOUR is a story to embrace, learn from and recommend to good friends.”
Bookreporter.com

“Fans of Paul Kalanithi’s heart-wrenching memoir will enjoy this poignant story about how a grown woman—who’s also a direct descendant of Ralph Waldo Emerson—spends her last days after being diagnosed with terminal breast cancer.”
InStyle

“In the tradition of Paul Kalanithi’s “When Breath Becomes Air,” this memoir, penned by the great-great-great granddaughter of Ralph Waldo Emerson, is about how this wife and mother of two copes with her terminal cancer diagnosis. Not a likely candidate for your beach bag, but its poignant, wise, and surprisingly light moments will keep you turning the pages, and counting your blessings.”
BUSINESS INSIDER

“With this book Riggs raises the bar on how to die, and how to see the world every single day that you are alive. This will be the most uplifting book you read this year.”
Love in the Time of Cancer

“The Bright Hour is a beautifully wrought, at times disarmingly funny, but always courageous book about how to live – and love – every day, even “with death in the room.””
Everything Zoomer

“Beautiful and haunting…a thoughtful and heartbreaking exploration of what makes life meaningful in a person’s remaining days…Buried within this agonizing tale are moments of levity — I laughed out loud many, many times — and flashes of poetry…This book provides a stunning look at that experience and has forever changed my understanding of the illness narrative. It’s a book every doctor and patient should read…It’s hard not to compare The Bright Hour to When Breath Becomes Air, Paul Kalanithi’s best-selling memoir about his battle with lung cancer. Both were in their late 30s when they discovered they were dying, and both write spare prose with a poignancy that is uncommon. However, Riggs’ book is markedly different in tone and content. It’s more humorous and less philosophical — but equally moving.”
USA Today

“It’s a tearjerker, but if you enjoyed When Breath Becomes Air, this book will hit the same emotional spots.”
BITCH MAGAZINE

“Memoirs of serious illness are haunted by the twin specters of death and self-help; whether ending in remission or posthumous sainthood, they suffer from the soft bigotry of the critic-proof. Riggs, who died at 39, a month after finishing this book, emulated entirely different writers, from Cheryl Strayed to essayists like Michel de Montaigne and her ancestor, Ralph Waldo Emerson. Her story was driven not just by her dark pursuer, breast cancer, but also by lives lived and books read. Read it for its insights, not its subject.”
Vulture

“A literary legacy of a life cut short by breast cancer.”
Katie Couric / Yahoo

“A lyrical, honest, and unsentimental mediation on living and living with stage 4 cancer…What I can’t turn away from as I sit with Nina’s story is her voice. It is present and unflinching. Its glittering pulse draws me into a narrative that moves towards that Bright Hour of the title, taken from Emerson’s journal: “… to cease for a bright hour to be a prisoner of this sickly body, and to become as large as the World.” It is a voice that keeps me up at night.”
WLRN Online

“A beautiful (and even joyful) memoir on living and dying.”
Cup of Jo

“A beautiful book about how you live when you are dealt a bad hand. For those who would shy away because it may be sad, embrace it for being honest, funny and brave.”
Bookreporter.com

“While living with terminal breast cancer, Riggs’s love of language allowed her to…write with a stunning clarity about the meaning of life when confronted with your own death. In my first year as a doctor, I’ve seen a number of people die. Exhausted by my training and burdened by grief, I catch myself wondering, what’s the point of it all? Riggs artfully taps into this universal curiosity, and her insights are a rare, precious gift. The end of life is a chapter we will all face, and Riggs proves that it can be written beautifully.”
STAT NEWS

“Full of joy and sweetness. The tears that came to my eyes several times in the reading of this book were not tears of sadness as they were in recognition of the tiny joys that comprise a life, and indicated recognition that…it’s those things that we realize we are going to miss when we are suddenly confronted with a fact that few of us want to face…[Riggs’] deep-rooted skills as a writer allow her to make all of the aspects of what she is going through into a form of art.”
Signature Reads

“This is one of those books that leaves you a little different than you were before…Poignant, vivid, and often funny, her stunning memoir about her last two years will help you relish the beauty in everyday life.”
Health.com

“Nina Riggs’s The Bright Hour: A Memoir of Living and Dying, also published this month, isn’t as famous as Gay’s book — but I hope it becomes so…a steady voice that invites us to feel the emotion without becoming swamped by it.”
NPR.ORG

“This synopsis sounds like a downer, but the book is not; Riggs finds ways to inject humor and wisdom into her experiences as her days among the living dwindle.”
Crave

“A courageous and heartfelt book about living and dying with cancer. Riggs does her best to help us?—?her readers?—?imagine the unimaginable…Riggs passed away before this book was published, but she’ll live on through her profound words.”
Medium

“Yet The Bright Hour is not a gloomy or brooding book. Perhaps Riggs’ life as a poet taught her to reconcile herself to transience, frustration, and the unlikelihood of achieving renown… Riggs shows us what that life is, bathed in the incandescence of anticipated loss…Riggs is funny and frank…Fear is strangely absent from the most popular books of this kind, and perhaps The Bright Hour is too raw to join their numbers. But Riggs’ willingness to include that darkness is what gives her last work its surpassing radiance.”
Slate

“An introspective told in gorgeous prose…truly stunning.”
The Digest Online

“[The Bright Hour is] heartbreaking in its realness, and will make you stop and appreciate every little moment—both good and bad.
Glitter Guide

“This book has a compelling voice that holds us buoyed, even entertained, in its progress to its inevitable conclusion, due to Nina Riggs’s willingness to bring us in close as she “clarifies” the heightened conditions of living with terminal illness…Riggs is a steady soul and a deft writer who is unafraid of reflection and strong emotion.”
Intima

“Read this if you enjoyed When Breath Becomes Air.”
Girls Night In

“We brace for the worst, knowing the ending before we even begin, in much the same way we did when starting Dr. Paul Kalanithi’s transcendent When Breath Becomes Air. Yet this book has a compelling voice that holds us buoyed, even entertained, in its progress to its inevitable conclusion…It’s that honest voice, that telling assessment of the truth, that calms us as we read this memoir about mortality…Riggs is a steady soul and a deft writer who is unafraid of reflection and strong emotion.”
Intima

Going Back to Suspicious Country

I took this blog down for a time. I wanted in part to let Nina’s memoir, The Bright Hour, stand on its own, without this as precursor. Nina used her material from this blog in the book, of course, but she edited, restructured, altered, and otherwise transformed it, and I didn’t feel quite right having a parallel text out there to square with the final product. But then I thought: this was the starting place. This is where the wheels got turning that ultimately led to her writing the book—turning a few dozen pages of blog posts into over three hundred pages of memoir in about four months’ time, all while dying of cancer.

Nina finished The Bright Hour only about six weeks before she died, just over four months ago. I feel like I’ve lived four years since then. But at the same time, just two weeks before she died, back in early February, we were on a trip to Turks & Caicos together—our last vacation—touring the island on a Vespa. It’s like laying next to a quickly moving stream. So close, so quickly gone, all at once. She’s obviously started to recede from my everyday life, the way people do when they are gone. But in many ways I feel her immanence too. In pictures, in things my kids say or remember, and of course every time I open her book I feel a connectedness that reminds me our life together is not so impossibly far in the distance behind me. I love when I get a message from someone who’s read The Bright Hour. In part I love it because it’s like a sympathy card—a gesture of pure kindness. But I also love it because most of those people have just “met” Nina for the first time! It’s like a little renewal, a small recursive going back and touching on her while my life without her still moves forward. And it is one of many things about Nina’s book project that aids in my grieving and memory of her.

So I’ve decided to pop my head back into Suspicious Country. I made the blog public again and I wanted to post this here to say: please enjoy her book, her blog, and all her writing, and feel free to comment or send messages as you’re moved to do. Those of us Nina left behind appreciate tremendously all your kind thoughts, remembrances, celebrations, and discussions of her life and work.

Nina Ellen Riggs: March 29, 1977 – February 26, 2017

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Post by John Duberstein

Nina died early Sunday morning, February 26, 2017 at Hospice and Palliative Care of Greensboro’s Beacon Place, after living two-plus years with breast cancer. Her book, The Bright Hour: A Memoir of Living and Dying, is available for preorder on Amazon. You can link here to her obituary as well as information on and an RSVP for the memorial service, planned for Monday March 13, 2017 at the New Garden Friends Meeting in Greensboro.

In lieu of flowers please make a contribution to one of the following organizations:

 

Camp Radiation

The dogs are at odds this morning. They usually play fight and nip at each other’s ears and paws for hours—the boys call it the Morning Match, the Afternoon Attack, and the Dinnertime Duel—but there is an edge to it today. Some yelping, a growl. One knocks the water bowl, the other slinks under the dining room table to sulk during the Morning Match. Maybe they’re trying to fill the gap of the lack of conflict in the house with the boys gone.

John just left to pick them up from their week at Cancer Camp. I guess we’re going to have to stop referring to it so breezily now that they’ll be home. Camp Kesem. A camp for kids who have a parent dealing with or dead from cancer. A tiny beautiful loving little nest of a place. I wanted to go back up into the Shenandoah’s with John to fetch them but I am not up to it. This latest treatment has been grueling.

I have a new tumor on my spine—this one at T12 vertebra, a few rings above the last one. Also some new cancer at the site of the last one. Plus the ones in my hips. For this treatment they give me a much higher dose of radiation than what I’ve become used to, and because the tumor is resting right next to my spinal cord, precision is that much more important. They made me my own personal body mold to hold me in the exact same position each time.

“Scootch up in your cradle a little,” says Nelson the radiation therapist as I lie on the metal table, “We need to line up the lasers with those crosshairs on your belly.”

After 45 minutes of angling and measuring and scootching and waiting, my arms—placed above my head—go numb and start to cramp. I’m dehydrated from spending the drive home vomiting after the last treatment. I wiggle my shoulders and Nelson’s partner Kelly pops up at at my head almost instantaneously. “You can’t move baby. Not even a twinge. Now we’re going to have to do the imaging all over again.”

“I’m so sorry,” I’m saying. I’m trying not to cry.

“I know,” she says, patting my thigh. “It’s not your fault, but you have to try harder.”

For the last five days John and I have been sitting around doing what all the other camp-sending parents do I guess: basking in our serenely quiet and clean house eating crackers and cheese and beer for dinner on the couch while simultaneously hitting the refresh button every two minutes on the Facebook page where the Camp posts hundreds of daily photos.

“Did you see the one of Freddy photobombing the counselor photo? Typical.”

“Yup. Did you see the one of Benny in the paddleboat with his stuffed animals? I think he was smiling. Do you think he was smiling?”

We’ve both been nervous about Benny—a profound homebody and on the very young end of the campers. And stubborn as hell.

It’s Freddy we get the call about, though. Yesterday afternoon. Joy—whose camp nickname is “Spring”—isn’t Joy already a pretty solid camp nickname?—is on the line. Everyone has self-selected camp nicknames. The camp directors go by Wallaby and Lotus.

“Foxtrot and The Platypus are both fine,” she says, “But we’ve been having some behavior problems with Foxtrot the last few days. He doesn’t always listen when he’s asked to do something. And yesterday during Feet on Bed Time, he and a friend were roughhousing and kneed another boy in the privates.”

Oh, Foxtrot.

“I am so sorry, although I am not super surprised to hear this,” I say. “Foxtrot has these issues at home as well.”

“No biggie,” she says, “He’s a trip—smart, hilarious, super responsible with his diabetes care. Just didn’t want you in the dark on this because he won’t be welcome back to Camp Kesem if this behavior continues. It’s too sensitive of an environment.”

“Of course,” I say. I’m holding the phone lying in bed with a scented sleep mask over my eyes to keep the nausea at bay. “I get it.”

Looking up helps—with nausea and when your kid is on the verge of getting kicked out of Cancer Camp.

Two days ago on the way home in the car while I was puking over and over again into the McDonald’s bag, my dad—my poor dad!—spotted some kind of dirigible up in the clouds over Graham, not far from the Embers Motor Lodge where the scooter patiently waited.

“Look at that,” he said—and we did, admiring its noiseless, almost imperceptible movement from where we were on highway below. I like direction that looks aimless but isn’t. Just subtle. Just making it’s way without hope, without despair. Isn’t that what Isak Dinesen said about writing? Same with living.

“That Platypus though,” says Spring, before we get off the phone. “He’s his own man, isn’t he. He’s doing just fine.” Surprises.

My last radiation blast is Monday. Yesterday’s aftermath is already better than the first with anti-nausea meds and steroids and some fluids on board. Once I get through this we get almost two weeks of vacation. We’re headed up to Cape Cod. It will be the one-year anniversary of losing my mom.

The big picture remains a little hazier. Other than radiation, there aren’t a lot of other treatment options available, although this landscape is always changing. The big hot thing in breast cancer (and many cancers) right now is immunotherapy, but it is still largely only available through clinical trials (unless, as the Queen said, I wanted to donate a building to Duke Hospital or something).

I am not eligible for any of the trials yet, unfortunately, because I have to fail another round of post-metastasis chemotherapy in order to qualify. That’s fine, but the problem is that the Queen feels strongly that it is my immune system that is keeping the cancer from taking off like wildfire right now, and more chemo that is unlikely to do anything will only deplete my immune system (this is her theory on why we are here to begin with).

So it’s a tough call. Plus all the of the US-based immunotherapy trials are still currently randomized and blind, which means you only have a 1 out of 3 chance of getting the actual drug and not the placebo.

The dogs still haven’t quite settled down. John should be home with the boys sometime mid-afternoon. MacDuff is standing on alert at the front door—barking at every Saturday morning lawnmower that growls on, every weed whacker, every bike wheel that tick-ticks by.

Ellie is lying at the foot of the bed. She can no longer hear or see very well. But if she feels me roll over in the bed she’s up standing at attention in a split second, staring at me. “What are we doing,” she implores. “What’s next?”

“I have no idea, you crazy beast,” I tell her, patting her head. “Let’s wait and see.”

The Crab

WRITTEN BY JOHN

No one is exactly sure how cancer came to be named. But, as with most things Western-medical, it is supposed to have originated with Hippocrates. Hippocrates apparently called the disease karkinos, the Greek word for “crab,” because of the crab-like tenacity of the tumor, the pain these masses caused (like the pinch of a crab), and the tumor’s hard, shell-like consistency. Later on the Roman-era Greek doctor Galen Romanized the name to “cancer” and speculated it was called that because of the crab-like shape of tumors he saw in his practice.

But crab also has taken on yet another meaning in our culture: orneriness. And—in spite of all the other cancer happenings—that is actually the meaning that’s been predominant in our household this summer. Sure, Nina’s got metastatic cancer, but she’s a whole lot less crabby than Benny, who is striving hard to achieve new levels of irritability and vernal indolence. In other words: don’t ask him to do anything if you don’t want to see The Crab!

The kid comes by his crabbiness honestly. He was born on July 13th, right in the heart of the zodiac sign of, you guessed it: Cancer. The other day we were reading horoscope typologies and one of the websites I visited generously described Benny’s temperament as “changeable and moody, overemotional and touchy, clinging and unable to let go.” I might have added “irrational, unhinged, and demanding,” but yeah, something like that. Let’s just say it suits him.

Summer is hard. It’s hard for kids, who have to adjust to a totally new schedule and paradigm. It’s hard for adults, who have to deal with kids who are not in school and acting like it. And this summer has been even harder than some. Nina has been in and out of radiation treatment. Before the summer, we were teetering on the edge of a relatively restful cancerous state, but, as with all things cancer, ultimately restive. And then there was cancer again, burrowing its crustaceous little claws into her hips, where she’s got tumors in both iliac bones. It’s been a weird time. Neither here nor there. Not long term treatment plan has taken shape yet, but there’s a vague allure of clinical trials. No major interventions (surgeries, chemo) but heavy duty radiation and the side effects of that, plus the cumulative wear and tear of cancer and life with cancer.

Then, just the other day, a familiar twinge. Like reaching into the shallow part of a summer beach where the water and sand are inextricable and feeling the sharp reminder that this is not just a place to play. Hermit crabs, green crabs, and lot of other pinchy creatures make that silty area their home. This time it’s pain in the back. Not where Nina previously broke her vertabra (the L2, we’ve become spinal experts!), but the spot her doctors had previously identified as “maybe something/maybe nothing” that we were waiting and seeing about. It’s near her T12, still the lower back but higher up.

Nina has developed an uncanny ability to know exactly where her cancer has gone. She knew she had a lump in her breast even when imaging could barely discern it. She knew she had a tumor in her back when it was still confounding x-rays and doctors alike. She had identified the very place where the cancer was in her hip while her doctor was still puzzling over whether or not it was worth doing additional imaging in that area. So when she homed in, pincer like, on the T12, I guess we both knew we had to go have it checked out. But we still called Duke to make sure we weren’t rushing off to the ER for nothing. The triage line at Duke has become a sort of oceanic sink hole for Nina. She calls. She waits. Sometimes they call back. Sometimes they don’t. But this time, the nurse listens eagerly, responds quite quickly that Nina’s oncologist, wants her to go to the ER stat.

We do. I leave work, we load the kids into the car. We have decided to go to the local ER, avoiding the time consuming and more exhausting trek to Durham. The triage nurse enthusiastically endorsed this idea. It pays dividends. Nina gets through the ER process in Greensboro in record time. The doctor is very kind and has a sort of general existential lassitude that’s somehow comforting. Like he’s been giving people bad news that they’re expecting for a long time. He examines her, sends her for imaging. Comes back and tells us the MRI shows that there’s a tumor at the T12, right in the very spot where she said she was hurting.

So now we have to wait and follow up with Duke. Nina will likely do additional radiation sooner rather than later, for both her other hip (the left one was treated, but not the right) and the new spot on her spine. They were already planning to restage her and maybe trying to get her into an immunotherapy trial. That should all be clearer in a week, when she sees the oncologist. No idea where this puts us. Does Nina stop working? Spend every second doing only exactly what she wants or must do? Do I take time off from work? Can we travel? How much time do we have? What will it be like? And the million other questions that I know I’m not supposed to be asking (live in the moment has never been my strong suit). Blargh.

When we leave the ER, we collect the boys from Pete, who’s probably taken care of them more than we have this summer. Benny wouldn’t eat anything in his stir fry except the meat. Carefully picking out green onions, fried rice, and veggies, Pete reports. We get home. Benny lies and says he’s brushed his teeth, then later forgets the lie and says he can’t find his toothbrush. He fights with his brother over Pokemon. He fights with us about being quiet at bedtime, about changing into clean underwear, about teeth brushing again. Every step forward is a step back, or maybe sideways. We put on some Scandanvian TV and try to fall asleep. No one sleeps. Nina’s in pain and emotionally overwrought. I have low blood sugar and am emotionally dysfunctional. Freddy has a restless night and is up several times. Except Benny. He sleeps the whole night through and wakes up as intransigent and uncooperative as ever. He refuses to clear his cereal bowl, then drops it while shuffling awkwardly across the kitchen carrying too many things. He angrily, reluctantly agrees to brush his teeth (Again?!!! I just did it last night!!!).

But he also comes in and out of our room several times, with an utter lack of sheepishness given his awful behavior moments before that may be unique to him and a special breed of sociopath, just to tell us (and particularly Nina, who is unequivocally the astrological, cosmological, and ontological center of his world) how nuzzly we are and how much he loves us, and, oh by the way did we know that the Pokemon Rhyperior has both lightening rod and solid rock abilities? Then he wants a cuddle. He sidles up to Nina’s side of the bed, squeezes himself up against her while continuing unabated with another Pokemon peroration (there is no oration, just an endless stream of discursive introduction into the world of Pokemon) and enjoys the fruits of summer vacation: no firm bedtime, unlimited Pokemon, and a mother who adores him despite his sometimes hard outer shell, pincers and distasteful, nipping behavior. I have to admit, it’s pretty adorable. Like the bath temperature water on the littoral, it makes the shoreline exploration worth the risk of crab bites. Benny. The Crab. This is our summer.

Labor day.

Last year, when we returned to the Cape at the end of the summer to scatter my mom’s ashes—the hill turning brown, the corners of the landscape sharpened, the ocean shifting from hazy grey-green to chilly navy—I felt this moment, ten months later, coming like a promise.

No concrete thought yet of metastases and regular scans and clinical trials. But as I sat on the porch swing before the service and watched one of our three guinea hens nervously pecking around in the lawn with her head bobbing up and down in the grass—a vigilant look to the task at her feet, another to the others’ movements, another to the horizon, and again—I understood what it is to stand in the sun on a perfect day and feel winter and grief in the warm breeze and in the dry rustle of the grasses and in the waves in the bay newly tipped with white.

We’d started the season with a flock of eight guineas—exotic looking, high-strung, speckled fowl known for eating pests. Beautiful, anxious birds. They roamed free around the yard during the day, laying eggs, disappearing together into the tall grasses, squabbling, munching on ticks and bugs, and periodically working themselves into loud, seemingly unprovoked lathers.

“Oh chill out, ladies,” we’d say when they would abruptly round a corner and zigzag madly across the lawn in a frantic rush towards nothing and away from nothing. They seemed to work each other up like a pack of children telling ghost stories on a camping trip. “You’re fine, birdies. No worries.”

At night they were cooped and quiet in a hen house perched on the cliff near the ice-age boulder and the clothesline where even before my mom died I could sometimes feel her ghost and the outdoor shower with its mermaid mural and front-row view of fishing boats and ferries shuttling vacationers out to the Vineyard.

Early in the summer, the guineas made a nest in a thicket of poison ivy just off the road down to the barn, and we discovered they must not have all been hens one day when, after a great deal of squawking and fluttering, suddenly there was a collection of downy chicks huddled on the path.

One was dead or nearly dead. The others were not yet very mobile, and all day the kids ran up and back reporting on the status of the babies and arguing over their names and personality traits—getting as close as the alarmist flock would permit before a ruckus would break out and they would flap up and dive at boys’ heads. Then, on one visit, the ruckus turned to something more serious, squawks becoming sirens, and the boys watched an osprey swoop down out of the sky and carry off one of the chicks—Clarence or Roberto or FuzzWuzz—and the boys began screeching and flapping themselves.

And then again, minutes later, after the grown-ups had been pulled into the unfolding crisis, the osprey returned and snatched another. And then another.

We yelled at the sky “STOP THAT RIGHT NOW!” and the guineas all shrieked and the boys shook sticks in the air and the osprey with the chick in its grip looped up and out, disappearing over the tall grasses and the grey-green waves, silent and unmoved as a paper airplane, and when, despite our efforts, every last chick was gone, we walked back to the house to explain with uncertainty in our throats that nature can be cruel and that everything needs to eat.

We felt more tolerant of the guineas’ excitability after that—more of a kinship with their constant fretting. When one or two of them would get separated from the group and start to squawk, we’d say, “Hang on, you’ll find them in a minute,” and we’d crane our necks around until we spotted the flock pecking their way up the path from the boathouse or emerging from under the porch.

Over the course of the summer, a few of them disappeared altogether—the occasional catastrophe of dark grey speckled feathers in the grass. The flock began to stick closer together. We’d count them each night and felt relief when they all were tucked in their roost and the door closed.

When we returned for Labor Day, gouged by loss a couple weeks after my mom died, there were only three guineas left. They were inseparable, more rattled, shriller—if possible. That weekend we found a fox den carved into the cliff about 75 feet from the hen house.

My medical news is good—as good as it gets really. My vital organs are still clear of cancer, and the spots on the bone scan are ambiguous—dark shapes on dark water, like a school of fish or a passing cloud. The phrase the radiologist uses in his report is “increasingly conspicuous” but my oncologist says to try to ignore that language, even though she speaks just as obliquely.

“Let’s just say when the cancer returns for real we won’t be having this conversation,” she says, sitting in her white coat and heels atop a file cabinet in a storage room the breast clinic is using as an auxiliary exam room due to significantly increased patient volume.

“I’m sorry, I don’t really know what you mean,” I say.

“What I mean—and I’m sorry I’m being coy, I just don’t want to jinx things—is we will follow up on these dark spots with more scans because that is what we do, but I don’t think we need to worry about them. They are not what a recurrence is going to look like when it happens.”

Her ocean eyes are filled with all of the ledges and trenches of a cancer doctor.

“I get it,” I say, part giddy with relief, but part like a guinea hen who has wandered away from the others in the tall grass near the cliff’s edge in the final weeks of summer. Who looks up when she hears rustling in the thicket—maybe the others, maybe the wind, maybe something more sinister.

 

Not terrible news.

WRITTEN BY JOHN.

We just got back from Paris. Paris is a wonderful city for just about anyone to visit, but I have a particular yen for Paris. French culture speaks to me. That’s why Nina took me there for my birthday. And it’s why I’m tempted to wax poetic here about the City of Lights.

But Nina says we need a low-key update, something that gets right to the facts. As an attorney, I know how to economize my prose, skip the decorative elements of style and cut right to the heart of the matter. A lean, not to say parsimonious, approach to informing you, the readers, about the latest stretch we’ve been through. It reminds me of something Tacitus is supposed to have said to Pliny the Younger about being concise in oratory as well as in prose. Did you know that Paris was already a settlement in Roman times? They called it Lutetia of the Parisii, after the Parisii Tribe who lived there. But I digress…

The truth is, I’m not sure what to say mostly because I think the latest news is cautiously, haltingly, and probably temporarily. . . good?

Nina had a whole mess of scans when we returned from our trip to Paris. The results of those scans (mostly a CT and bone scan) were thoroughly positive. There are some small spots they are watching, but there is no clear active disease in her body that anyone can see. That doesn’t mean there is no cancer present. Her scans were clear after her mastectomy, too, and she developed this latest tumor while still in active treatment. But the only thing anyone can discern right now is: no cancer to be seen.

As The Queen of breast cancer docs said when told us these results: What this is is not terrible news.

In the exam room, we both took this more or less in stride, in the way we’d become accustomed. That is to say, we were both a little undone but not devastated either. Peering into an uncertain future, realizing we had to take things one doctor visit at a time, etc.

But a funny thing happened about 24 hours after we got the news: we realized it was actually good news. It’s not definitive good news, not “you’re cured” type of news. Indeed, when we asked what it would mean if the cancer recurred at the next scan, the Oncologist said, more or less “if it’s back in your internal organs, the median survival rate is 26 months. But if you would have asked me in December what your outlook is I would have said something equally bleak, and now there’s no active disease. So take that for what it’s worth.”

In some ways, this makes the treatment path a little murkier. She’s not sick enough to qualify for any clinical studies. She’ll have scans again in eight weeks. We will follow the protocol of observation (which is of course not just observation).

Dr. Cavanaugh put her on a regimen of Zometa (zoledronic acid), an intravenous drug to promote bone strength. It has some less than pleasant side effects (flu-like symptoms for about 24 hours are the most obvious, but the long term effects read like a parody of an FDA warning: “may cause crippling disintegration of most internal organs, colorectal boils, severe internal bleeding, locusts, frogs, rivers of blood, and death…”). But she only has to take the drug every four weeks, she won’t lose her hair, and it doesn’t cause any of the nausea of chemotherapy drugs. The point is to preventively make her bones stronger to help avoid another “pathological fracture” akin to what happened in her back. But they think the drug may also have some ancillary beneficial effects.

The doctor also recommended doing an oral chemo agent. It’s a drug that is less potent than the traditional chemo that NER had before and acts in a different way, interfering with folate metabolism instead of just destroying the DNA of the reproducing cells. Kind of like Obama’s approach to ISIS as compared to that of Ted Cruz. She said she was in favor of doing this drug, but mostly because it’s available, not overly toxic, and she likes to be as aggressive as she can be, particularly with younger patients. But she also told us that probably 9/10 oncologists would say skip that drug, wait to do chemo until there is a recurrence and you know what you are dealing with. She told us there is no data that suggests this drug does anything particular for Nina’s type of cancer, and nothing that indicates it will increase her chances of survival. So Nina decided against it, and KB validated that choice.

The doctor also validated another choice we were falteringly trying to make: she told us that Nina could (should, even!) engage with any number of complementary medical approaches, including a supplement we found out about not long ago through our sister-in-law Amelia called MSM, but also including: acupuncture, herbal remedies to stimulate the immune system, exercise, etc. She even brought up Relaxation Jon again. She was wide open to this type of thing and even suggested a practitioner she trusts for her own complementary medical needs. This was a real anxiety relief because: 1. We were overwhelmed by the sheer number of possible complementary remedies and were really happy to have a recommendation for a guide through the holistic wilderness; and 2. We like having the doctor’s stamp of approval (or at least I do, but I’m a craven approval craver).

So, in the spirit of Tacitus, I shall concisely summarize the latest in our Annals of Nina’s Cancer: 1. Scans as of now are clear, no active disease; 2. Nina is on a once every four weeks regimen of Zometa, the bone strengthening drug; 3. There will be another set of scans in approximately 8 weeks, which will be, according to KB, VERY important, because there will have been that much more time passed since radiation and that much more chance for cancer to grow if it’s going to grow; 4. There is no other plan at the moment. We are now living scan to scan; 5. Nina is going to start taking some supplements and explore herbal and other complementary remedies to help boost her immune system; 6. If the disease does come back, Nina will most likely qualify for some type of immunotherapy clinical trial.

The lesson that we’ve been slowly learning, if you can call it that, is Nina’s disease, whatever its true, hidden, post-modern narrative arc, is not likely to follow any of the predictive measures the medical community has. It has successfully confounded thus far pretty much everything the oncologist thought it would do, up to and including not being visibly present anyplace in her body only weeks after having spread in a nasty way from the breast where it originated to Nina’s spine. That’s a pleasant surprise, but still unpredictable. So maybe unpredictable can be OK, too. And maybe we just need to live with unpredictable, because that’s what we’ve got.