A memory of elephants.

Like a school of fish or a pride of lions or a murder of crows, that’s what a group of elephants is called: a memory.

Nothing thunderous in that phrase—nothing like what is suggested by a herd of elephants or a parade of elephants. More like elephants drinking from a low lake at sunrise. Or a spot where elephants used to be drinking, but are no longer. Something enormous and consuming and ethereal.

Not unlike anesthesia, really, which—as the absence of all sensation—leaves you with incisions and deep aches and crisp bandages you cannot empirically account for and are therefore compelled to make sense of by conjuring a collection of massive and unshakable dreamlike certainties.

Surgery was smooth—and far less scary than I thought it would be. My parents were able to slip upstairs after my mom’s appointment with Dr. Gasparetto to see me off into the Land of La La—I was so relieved to see them before the world went spinning.

And John was right there with me when I woke up—and when I fell back asleep—and woke up again—and conked out again. He calmly held my hand, smiled at my dopiness, and made fun of me on social media, all while sounds of the Pirates playing an evening game on some distant TV in some distant universe seemed to sift like light through the hospital blinds as I came back to the world.

And then there was Dr. Georgiade peering down at me, talking about what an excellent job he had done (surgeons!) and telling me my nodes looked negative and making jokes I could hardly follow even though I’m pretty sure they were the same jokes he’d been making before surgery.

And all the time I knew the boys were safe at home conning their Nana into giving them soda and financing their arcade addictions.

The whole thing was pretty blissful. I’ve been lucky to have no complications or even much pain so far—that lonely little bottle of oxy on my dresser is just sitting there going to waste.

But on the subject of elephants, there is an elephant in the (recovery) room: I am missing a breast.

There are in fact several elephants—or a memory of elephants—in the room. There is the cancer elephant, taking up a lot of space but not exactly in the same menacing way it was before. And my mom’s elephant, that unpredictable beast, which shrinks and grows, sometimes looking familiar, but other times so strange and coarse I think it is actually a rhinoceros—part of a crash of rhinos, or a stubbornness of rhinos.

(Who comes up with these collective animal names? A gaze of raccoons. A rhumba of rattlesnakes. A float of crocodiles. A rafter of turkeys. An exaltation of skylarks. A business of ferrets. It’s as though some free-associating poet posed as a biologist for the world’s best homework assignment.)

Then this newest elephant: I have one breast. The other side is something I don’t really know yet—I haven’t seen under the bandage. It’s not gory or bruised or swollen (the surgeon did, in fact, do a great job, it seems). But I don’t know what it is. It looks flat, almost concave—like a lake bed where a memory of elephants once drank. It is an absence, a memory itself.

I sense that my emotions around it are waiting as if on a shelf just out of reach. Right now the focus feels so physical, almost geographical. The drain in my chest, the sore armpit, the way my shirts now drape on one side as if on a clothesline.

But there are all the other things, too—the obliterated sense of femininity, the skewing of self, the neither-here-nor-there-ness of the body. I don’t really understand that part yet. I guess that’s why this fact is the most elephantine of the elephants in the room for me right now. It’s definitely there, but I don’t know what exactly to say about it yet.

So right now I have my eye on those dreamlike certainties: a cure of doctors will examine me tomorrow at Duke, and in the meantime a cauldron of thunderstorms simmers on the horizon and an anticipation of cocktails awaits some ice.

Interlude of gratitude.

I am no longer Gary Busey-high, but I do want to climb the walls for a sec with a rant of thanks that may make it seem like I am.

I have never felt so supported or looked after in my life as I have in the six months since I was diagnosed. My beautiful friends and neighbors and cousins and coworkers from so many corners: How did you learn to be such good keepers?

Your letters and food and well wishes and texts and visits and flowers and gifts and helping hands have stunned me—and have been the difference between this experience being bleak and being transcendent. I can’t get over it.

I hope I am given the chance in life to do for you in the million ways you have done for me. I am changed by it and feel quite literally buoyed by your generosity every day. Thank you thank you thank you thank you–I love you.

Things we know.

Written by John.

1. Nina is done with surgery, a simple mastectomy of the right breast.

2. Nina’s sentinel lymph nodes were clear of any cancer.

3. This is good news.

4. The full pathology report (with the size of the tumor) will not be ready for about a week.

5. Dilaudid is a powerful drug.

6. Nina is higher than a Gary Busey convention (see no. 5).

7. When Nina is high, she does not ” go all Busey,” grope the nurses, and wind up in the tabloids. Instead, she gets even cuter than normal.

8, Nina’s first description of her “new body” was to look down her hospital gown, look up, hold up one finger and say “uno. Not dos.”

9. I’m typing from the recovery area. We will update the journal with more detail once things settle down and/or we have more info.

Mother and daughter tour Italy.

At age 19—sophomore year of college—I was basically the most independent, worldly person to ever exist.

I was studying abroad in Italy—living in an apartment that was darkened every evening by the shadow of Florence’s Duomo and shook each morning with the bells of San Lorenzo, learning to paint nudes and to appreciate pietas and frescos, jumping on ferries to Elba and standing-room-only trains to Venice and Rome and beyond with just my walkman and a small leather backpack, hitchhiking into the Tuscan countryside, careening through the dark streets of Firenze with strange boys to buy hash from the North African drug dealers that huddled in the quiet square off the Piazza Uffizi. Oh yeah—and I was an EXPERT in chianti and brunello.

Basically, the universe’s Most Experienced Person.

Then, after I’d been living in Italy nearly two months, my mother came to visit.

From almost second one, we fought—my apartment was messy, my skin was greasy, oh my god stop looking at the map in public, what are you wearing, why are you upset?! We were at each other’s throats immediately.

My mother!!—who I would look forward to talking to all week on our Sunday calls home from the single payphone in the grungy lobby of my building, who I’d missed so badly I ached at night, whose visit I’d been counting down to since the day I arrived, who was basically my favorite person in the whole world!

Apparently she did not think I was quite the star of the universe I fancied myself. Also there was this—something we came to understand together much later: her desperately needing to still be my mom, me desperately needing to prove to her how much I didn’t need a mom.

We were a mess. We argued and sniped through almost every single great museum in Italy. Years later, I tried to write a poem about the experience—us bickering our way through the uneven streets of Pompeii, not speaking but occasionally needing to reach out and hold on to each other for balance. It’s a weird off-kilter poem, one I’ve never really felt like I have nailed—but she’s told me she wants me to read it at her funeral.

Which brings me to: now. My mom is dying.

I feel weird writing that—like I’m saying something bad about her behind her back. But it’s true. And no one knows it better than her.

She was diagnosed with multiple myeloma 8.5 years ago. Back then she had a stem cell transplant and several different courses of chemo. Then there was a quiet spell—a few good years where she got to have a life, travel, see my brother get married, watch my kids grow. Things didn’t get really hairy until about 2.5 years ago when the drugs she was on stopped working and the cancer came tornadoing back.

It’s been pretty wild since then—brutal, even. Multiple hospitalizations, endless steroids, blood and platelet transfusions, five bone marrow biopsies, more bodily indignities than one can count, daily debilitating nausea, more days of not feeling well than feeling well, two—and now three—failed clinical trials.

An old friend said to me lately: “How fucked up is it that if you die from your cancer you “lost the battle” but if you happen to get hit by a bus first nobody implies that you should have bested a several-ton moving vehicle?”

I cannot even bear to comprehend that someone would say that my mom has “lost the battle.” That’s effing ridiculous. And I refuse to make a metaphor for what she’s been up to for the better part of the last decade. What she’s been doing has been living.

At any rate, we found out this week—after a bout of more awful sickness—that the latest clinical trial is not working at all. The blood work is all going in the wrong direction. And this week she has decided she’s had enough—she’s not doing any more treatment.

No one knows exactly what this means or how long she has, but she’s simply DONE. And I totally, totally get it.

I cannot contain in words (and certainly not in this post) what this woman—and the impending loss of her—means to me. Talk about center of the universe—she is my homepage, my Sistine Chapel, my Google map. I can’t begin to untangle myself from her (but maybe years from now that will turn out to be a good thing).

On Thursday she goes to see her equivalent of The Queen—an equally stunning, badass of a woman, Dr. Cristina Gasparetto (almost 6 feet tall, a tsunami of gorgeous black hair, stiletto heels even on clinic days, her thick Italian accent making even the most toxic chemos sound like heartbreaking arias—she pronounces thalidomide (a common myeloma drug) as ta-lidio-MY-da), whose care and brilliance has been absolutely central to keeping my mom going these last years.

Unless Dr. Gasparetto has some magic bullet she’s been hiding up her sleeve, we’re going to tell her it’s time to call it quits and ask how exactly one goes about dying from multiple myeloma.

Well, actually—WE won’t ask that. During her appointment, I’ll be upstairs—literally, in the same building!—having the mastectomy.

Forget Italy—the Mother Daughter Cancer Tour is where the real shit goes down. In this melodrama, we’re on speaking terms the whole time–and so much more than that. Pompeii and Cancerland actually have a fair amount in common–both full of ghosts and weird palpable reminders of life interrupted mid-living: loaves of bread still in the oven, set dinner tables, Vesuvius not quite dormant on the horizon. And even as we trip and fall on ancient, uneven streets, we are still reaching out constantly to each other for balance.

The poetry fox (and other tales from the cancer center).

Yesterday, as it turns out, was Spa Day at Duke Cancer Center.

When John and I arrived yesterday morning, it looked like they were setting up for a wedding reception—white folding chairs, flowers, cocktail tables with white tablecloths. Someone was playing the grand piano in the lobby.

(FYI, April and Leo—in the throes of their illnesses!—have decided to get married in the hospital, so maybe that was just on our minds.)

As the makeup ladies and their unguents and the masseuses and their chairs emerged, it quickly became clear there was not to be a bride and groom. Just lots of free samples and wellness brochures.

What there was—and I don’t think anyone really saw this coming—was a Poetry Fox. More accurately, there was a man—in a giant furry fox suit—with a typewriter—composing poetry. You give him a word, and he furiously types up a poem based on it, right on the spot. Then he reads it to you aloud.

But we had a date with the Queen, so we had no time for Poetry Fox.

It was great to see Dr. Cavanaugh. We hadn’t seen her in the flesh since I first started treatment. When she walks into the exam room, it’s the kind of thing where suddenly everything is going to be okay. She’s got it all under control. She is not afraid to say things like “hopefully cured” and “probably no more chemo.” She told me my cancer seems to be “kind of wimpy and not too clever.” I mean, I felt a little sting that she wasn’t more impressed, but fine.

Here’s the situation: the chemo does not seem to have shrunk the two tumors in any dramatic way. While in some ways this seems like a bummer, there is a silver lining. Apparently, chemo works best on more aggressive tumors—the more quickly the cancer cells are multiplying, the more the chemo can kill them off. So, a tumor that doesn’t really respond to chemo is likely a tumor that is pretty lazy. This doesn’t quite line up with the prognostic indicators from the pathology report (a high rate of proliferation, the fact that the tumors are triple negative, which generally means aggressive), but the Queen feels pretty convinced. And the thing with smart, aggressive tumors is that even though they respond well to chemo, they can also find insidious, clever ways of coming back. Less true for the wimpy ones.

According to the Queen, my tumors are shaped like a dumbbell, with each tumor being one of the weights on either end. And between them—no one’s totally sure but–what looks to be a 4cm pipe of vaguely cancerous material.

On the mammogram images, to me it looks like you’re in an airplane at night. The tumors are two lit-up cities—say Greensboro and Winston-Salem. And the 4cm stretch is I-40, lit up by headlights. What we don’t really know is how trafficky 40 is until the surgeon gets in there. That will determine a lot of what happens next.

According to the Queen, this is a stupid way for cancer to behave. Smart cancer explodes itself like an atom bomb—mushrooming out wherever possible and jumping on the lymph node train to ride to the far reaches of the body and set up diabolic satellite campuses there. Stupid lazy cancer makes a tumor, gets bored, sidles around, builds a nearby tumor, hangs out there munching on donuts.

But in order to confirm the geography of the tumor, she sent me for yet another scan and also set up an appointment for me to talk to the surgeon again, just to make 100% sure that everyone was totally resolved that a mastectomy was the best option. It is the best option—I actually do feel totally resolved on this—but I’m all about process, so we obediently went through the motions.

There was a VERY LONG WAIT to get the scan. All around us, spa day continued. Lots of patients, a little flushed and their chemo caps slightly askew, wandering around dazed after having a massage. Lots of lavender wafting in the air. For 2½ hours I sat in a packed room of anxious women—ranging in age from about 25-90, all in our grey dressing gowns—half of us texting, the other half knitting. No one with enough focus to read.

During that spell, John decided the time had come to go visit Poetry Fox.IMG_0719

There was a line. The woman in front of John got a mediocre rambling prose poem about a childhood memory of Poetry Fox’s. But John gave the Fox the word “nonplussed” (a much-debated word in our household that I have apparently misused my whole life) and got in return a surprisingly delightful poem that—while indicating that Poetry Fox also does not understand the accurate meaning of nonplussed—is definitely a worthy souvenir of our cancer days at Duke.

In short, we were downright nonplussed (I think?) by the whole experience. A FOX WROTE US A POEM! ON A TYPEWRITER! BETWEEN ONCOLOGY APPOINTMENTS!

Many hours and lifetimes later, we eventually were seen by the surgeon, Dr. Georgiade, who confirmed that given the latest scan and information, a single mastectomy is still the way to go. That is officially scheduled for June 18th—so the countdown is on.

[And for those who might wonder about the single v. double mastectomy, the thinking is that in the immediate moment, what is most important is taking out the active cancer. This is what Dr. Cavanaugh calls a “Fighter Issue.” There is another category of things—what she calls “Survivor Issues” that involve making sure this thing doesn’t come back some day. That involves considering removing my other breast and possibly ovaries, etc.

But there is a 20% chance of infection when removing a breast, and what she doesn’t want is for that chance of infection to occur in the non-cancerous-at-the-moment breast and delay/prevent me getting treatment in the cancerous breast.

I will very likely have the other breast removed someday down the line when I am cancer-free and we are thinking about prevention and reconstruction and having another surgery anyway, but right now we’re firmly in the “Fighter” camp.]

“Make them work / to crack / you,” Poetry Fox once famously wrote.

While I don’t really subscribe to this philosophy in my emotional life, I’m good with that as a mantra for the medical journey. I hate the all the warfare jargon around cancer—the bIMG_0720attling, the fighting/surviving, the winning/losing, the “beating this”-ing, but I think I’m good with not letting it crack me. I
will be the densest little nut—a squirrel’s effing nightmare—green and unyielding. Not even Poetry Fox’s sharp, clever teeth will pry me apart.

(Of course, the real question is, how many joints did Poetry Fox smoke when he got home from Spa Day?