The Crab


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.


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.


Heads of kings, heads of angels

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That there are darker, rawer things that I am scribbling down and not posting on this blog is something I confess to John and to Tita & Drew—who are both writers—at dinner after martinis and wine and a perfect piece of salmon.

That sometimes I do not post here unless I can pull the threads together somehow, unless there is a graceful metaphor in which to seek refuge and shape for this mess. That sometimes I worry that I function more like the PR team for Nina Riggs, Cancer Patient, rather than a terrified set of eyes staring into an unlit room.

That there are rough, ugly thoughts and scraps of prose that don’t fit. Where do I put them?

Here is one: In Paris it seemed like every single woman had two perfect breasts, each unscathed and rightfully hers, and no one else was just wandering about like a marked person with a time bomb strapped to her body (Je suis une terroriste I thought more than once, and every time I heard the wail of a siren I imagined it coming for me—or in my wake.). What a lie—a total impossibility—but I could not identify the ravaged look on anyone’s faces, though I tried. It was my failure, I’m sure. Maybe it translates differently. Maybe it was just that all I could see everywhere was the last version of myself in Paris: age 24, intact.

Here’s another: I hardly remember how romance works.

And one more: The grey then yellow light bouncing off the Seine in through the unshuttered windows of the apartment we were loaned on the Île de la Cité was so exquisite that I lay awake crying until my stomach balled and ached and I spent most of the night in the bathroom, missing my mom so bad because I could not call her and tell her, and all I could hear was her voice exclaiming about these very apartment buildings on my first trip to Paris at age 16 as we raced along the quai in our taxi: Who in the world lives there?! Can you even imagine!?

The other day, Tita and I discussed this writing issue some more in her minivan on our way home from an afternoon of very radioactive scans at Duke. Tita told me about an essay she’d just read about writing inside a very tiny space that makes you feel like you are held and safe and you can open yourself up to say the scary things and about a lit class she took in college called Studies in Evil. In the Evil class, they’d read Beowulf and Richard III and Genesis and explored how afraid we are as a culture of images of uncontained chaos (example: disembowelment). The professor had called them Images of the Abject. How we contain things and give shape to things in order to be less afraid of them.

Yes. The crafted idea does this. The metaphor does this. The intact body does, too.

In Paris we visited the Cluny Museum, full of artifacts and art from the Middle Ages. The most famous things there are the Lady and the Unicorn tapestries, which are just the absolute best—if you love strangeness and symbolism and mystery.

But this time it was the collection of life-sized stone Jesuses from the 14th century that did it for me—on the way to the cross, on the cross, dead in Mary’s arms—so human and agonized and open-faced and accepting all at once. Complicated eyes, resolved lips. I couldn’t help notice in the emotionally brutal pietà, though, that Jesus’s wounds were still the daintiest of paper cuts. No chaos.

Reveal the pain, but hide the wreckage.

Another thing I loved: a tremendous limestone-y room full of rows of giant sculpted heads—most of them ghostly white, only flecked with the occasional remaining paint chip: the once-rouge of a cheek, the once-blue of a crown. The labels read: ca. 1220, Les têtes des rois and Les têtes des anges. The heads of kings, the heads of angels, taken from the façade of Notre-Dame. And then, along a separate wall, a gallery of the bodies, lined up in rows like a choir, that I suppose the heads had once belonged to. Les corps.

I stared into their huge vacant faces. I liked the ones with parted lips the most, as if they’d been interrupted and had been waiting patiently these eight centuries to talk again. That’s what was in their faces that I liked: vacancy achieved through patience. It also made me want to bash their faces in and taste the stone as a powder.

Somehow I still don’t know what’s next. Somehow tomorrow is still the day I’m supposed to see the Queen and I am still staring very hard into the dark room. Somehow tomorrow school is canceled and the internet is calling for a treacherous morning across the region: wet snow, turning to ice—maybe later turning to rain.

Thank / you

Last night around 2am I woke up with the panicked feeling—kind of like choking, except nothing in my throat.

I’d fallen asleep hard—my head on John’s shoulder—without brushing my teeth or washing my face or taking my socks off.

But then suddenly: All the Things.

The school voicemails I haven’t listened to. The overdue library book on the table by the front door. An unmade kennel reservation for the dogs. The recycling that won’t fit in the container. Incomplete work. Unreturned emails. Unwritten thank yous. Unfinished parenting. The universe coming apart at the seams.

Yesterday was my last day of spine radiation. This round—although thankfully short—has been harder than the last. Exhaustion on a level I’ve never felt before, and then just a general ill feeling. I’m glad to have it behind me, as much as I’m afraid of what comes next.

I feel like I have cancer, I heard myself saying to John the other day.

There still is no concrete plan. I didn’t end up getting to see Dr. Cavanaugh when I was scheduled to—she wasn’t ready for me yet. Which is fine. I want her to have time to figure out the options. But I also wish I had some sense of what to expect of the coming months. I feel this churning uncertainty at the core of everything that makes it hard to find peace.

When I was in the hospital, I was paid a visit by a nurse who moonlights as a stress management guru. Nurse Jon—or Relaxation Jon, as my friend Tita who was visiting me when he came in quickly dubbed him—had a hypnotic voice and an almost unsettling command of the vibe of the room. He talked (or purred) to me and Tita and my dad about breathing techniques and mantras and allowing ourselves to be held by the bed or the chair or the world. I think he put us under some kind of spell. Time stretched and bent. Nurses and techs seemed to hover at the door, but were uncompelled to disturb us.

It happened that the Queen herself stopped in to see me when he was doing his thing, and even she immediately deferred to him, saying Oh, it’s you! I’ll come back! Your work is far more important than mine!

I cannot stress how unusual a stance this is for Dr. C.

No, no—please come in we all insisted. So she joined the four of us in my closet of a hospital room. She was noticeably different in his presence—a little fan-girlish—even as she did her normal shtick and he waited on a chair in the corner.

Listen to what he has to say she said as she left. And when she was gone, the spell resumed.

Since the hospital, I’ve been following his techniques as often as I can: calm, soft belly breathing, accepting the support of the chair/world, a positive mantra embedded in the inhale and exhale (Right now / I am ok) of each breath.

So, forty minutes into last night’s freak-out, I summoned some Relaxation Jon. Instead of the jumble of “undone”s, I began to visualize this swirling current of gratitude that flows from me to so many people in my life. For the love, the caring, the support, the emails and cards and letters, the donations, the meals, the amazing array of gifts and gestures.

Just yesterday I opened a package from my cousin Elise with a remarkable container of sand and shells collected from my favorite beach in the world.

I have received books and scarves and charms and the world’s cuddliest blanket and a bracelet of jade prayer beads that I now wear every day and a hand-painted potholder and a copy of a letter of recommendation once written for me by a most beloved professor and a perfect handknit pink cozy to house a hot water bottle for my back on the flight to Paris.

If I owe you a thank you, please forgive me. I promise it is not a lack of gratitude or appreciation. It is deep fatigue and a lack of focus.

But last night, I allowed every one of those things to flow through me, and it felt amazing. My mantra shifted to a simple Thank (inhale) / You (exhale), and with that came peace–and finally sleep.

Pretend burial.

Earlier this week, hurtling along I-40 on one of my final daily trips to radiation, I heard this thing on the radio about a teambuilding exercise that an employer in South Korea is using to raise worker morale.

During the exercise, employees dress in long robes and sit at low desks. Each writes a letter to a loved one as if it were their last correspondence. Sniffling and even outright weeping is acceptable.

Next to each desk is a big wooden box. But not an ordinary wooden box. The kind of wooden box that is a coffin.

When the workers are done with the letter, they lie down in the coffin and someone pretending to be the Angel of Death comes around and hammers the top shut. They lie in the dark inside the coffin for about ten minutes. The idea is that when they re-emerge they will have a new perspective on life, one that will make them more passionate about their work and appreciative of their lives.

This Christmas week was supposed to be the last hurrah of 6 weeks of radiation—my last day scheduled for the 23rd, and then one whole day to pull Christmas together. Overall, despite the challenges of the last few months, I was feeling pretty hopeful and festive—beloved family coming in to town, the magic of internet shopping/wine drinking after kid bedtime, class parties, piano recitals, baking, the culmination of this whole mess of treatment seeming to be almost slipping into the rearview mirror. The only thing that was getting me down was my nagging back, which just seemed to not really be improving as quickly as I wished. I was feeling a little 90-year-oldish, but hanging in there—pushing through it when I could.

I thought about the Korean work burial a number of times. Intriguing, but the mandatory-ness felt kind of heavy handed. And I was skeptical about the boss’s clear expectation that his workers would reemerge with renewed vigor to work harder.

Still, it resonated with me that a serious, vivid envisioning of one’s own death could be a rewarding and enriching experience—a chance to take stock in that way we sometimes try to do at New Years but it gets all clogged up with booziness and roman candles and overpriced meals.

The Korean boss—who used to work at a funeral home—also has his employees engage in a rousing exercise of forced laughter before they sit down at their desks in the morning. Supposedly it stimulates the system, and if done regularly and convincingly enough can replicate the benefits of genuine laughter.

The night before my second to last treatment had been a particularly rough one—lots of spasms, hard to stand up and use the bathroom. At one point it took me around 45 minutes to summon the strength to walk down the hall to the office to get a roll of tape for present wrapping.

John drove me in to my radiation appointment that morning, and I needed a wheelchair, as I sometimes have these past few weeks. The receptionists slapped the yellow FALL RISK bracelet on my arm as they have done a number of times since early November. Radiation went well, as normal—Motown Christmas carols over the speaker—but when I mentioned to one of the techs that my pain was bad again and I was having a hard time peeing because my muscles were so tight, someone paged the doctor.

I already had an orthopedist appointment scheduled for the next day, but someone said, The quickest way to check this out is to send you to the ED and get an MRI. They were apologizing, but I was relieved. My biggest worry was that we would be there so long I would miss some of my afternoon commitments and I’d still be in pain.

An hour or so later—down a quiet hallway of rooms of gowned patients lying flat like me on their backs inside tight loud tubes, silent patients in their beds being wheeled to and from these sterile basement rooms, the pretend burial exercise came back to me again. As the machine clanked and buzzed and zapped all around me for about an hour as I lay impeccably still there in my hospital gown I thought Forget the angel of death. The angel of medical imaging is loud and terrifying enough. I would have six more similar scans in the coming days.

I did emerge with some euphoria. That machine reminds me a lot of what it feels like to stand inside my son’s room during ‘band practice.’ I said to the techs. I felt very at home. Thanks so much for that retreat.

 I’m not half bad at the forced laughing thing, either.

Now you just need to wait an hour or so for the results, which we will try to expedite, the ER nurse said, and we can get you out of here. So, John sat in the little chair in our little room eating gross hospital food and fussing with social media. I think I had some naps and maybe some pain meds that made the world of metaphorical dying simulation quite lovely and ethereal.

When the results did come back (very quickly!), it turned out it was the sucky job of the ER attending—who I hadn’t met yet—to remove the word “metaphorical” from the whole situation.

He was so young and cheerful and decided to start on a bright note: Good news—your labs look mostly normal. Ok.

But one thing to note—seems that you do have a significant fracture in your spine, at the L2 vertebra. And the way it is broken is very worrisome. It’s not a trauma break. It’s a pathological break, likely caused by a tumor that has metastasized from your breast.

I am so sorry, he just kept saying, I hate telling people these things and I’m not very good at it.

The world kind of broke open right there—or maybe the reverse is truer. Maybe the wooden box lid slammed down kind of hard on our heads.

We’re going to admit you up on the oncology ward. You will probably have surgery right away.

A stream of doctors after that—one crouching down to eye level with me, gripping my hand and not pushing away her tears. Another—Dr. Rosenblum—standing over me with the face of a mother whose daughter is very late for curfew. She kept patting my hair. John’s eyes from the visitor chair reflecting my own face back to me again and again: WAIT, WHAT? We kept asking each other, WHAT?

I don’t know what exactly will happen next, but you know that metastases put you at stage four, the crying doctor told us. This is clearly an aggressive cancer. It recurred before we even finished treating it. It’s probably time to put your affairs in order and make a bucket list, as hard as that is to hear.

A fuck-it list, John quickly started calling it—kind of the opposite I guess. What can we just say “fuck it” to and send splashing off into some sewer and not bother ourselves with anymore?

Turns out not many things!

It’s early days still, I know, but there is not a lot of ambiguity in the diagnosis. I will die of this someday pretty soon. But if lying in the wooden box—or the clanking metal tube—or under the hands of a weeping doctor—has underscored anything it is that there is no real fuck-it list.

I want all of it—all the things to do with living—and I want them to keep feeling messy and confusing and even sometimes boring. The hospital transporters bitching about their insane holiday hours. The Queen sitting on my bedside looking me in the eyes and admitting she’s scared. The sound of my extended family playing an improv word game downstairs around the dinner table. My weird chemo hair growing in suddenly in thick chunks. Light sabers cracking Christmas ornaments. A science fair project taking shape in some distant room. The drenched backyard full of runoff, and tiny, slimy, uncertain yard critters who had expected to remain buried in months of hard mud, peaking their heads out into this balmy Christmas air, asking WAIT, WHAT?



Found on Level 00.

Most of radiation is about waiting. The actual zapping takes about 15 minutes.

After you check in (name and birthday, have you fallen in the last 30 days, have you traveled outside the country in the last 3 weeks) you wait in the big lobby, then you get pulled down the corridor to change in a little booth—it’s kind of like the opposite of Superman: you go in your normal human self, you come out hospital-gowned and feeble looking.

Then you sit and wait some more in the Gowned Area.

It’s mostly the same people every day, so you can really get to know some folks. Sometimes you feel pretty social, and other times you retreat into your feeling-pretty-poorly shell and are more of a listener.

Sometimes you listen with a notebook in hand and are a little bit of a thief (and HIPAA violator?):

Ms. Sutton, the doctor would like to speak to you immediately.

This morning he wouldn’t even eat ice cream.

Love you darlin’.

I’ll shut up when I’m dead.

I’m just so worried.

Ooh, this place rocks—they have hospital ice!

Hi Crystal—it’s me. I’m down here with the nukes.

I’m sure I’m not the first person to tell you that you look just like Prince.

The radiation team loves to dance—they play the Motown/funk Pandora station every day over the speakers in the radiation chamber (name and birthday please), bopping around, getting down on it, all while they threaten you with your life if you move a smidge. You take them pretty seriously, even though they are all 24 years old. You ignore the hell out of Marvin Gaye.

Daddy’s fine, Mom—he just went to the bathroom. 

Love you.

Well, I guess all we can do is hope.

It isn’t nearly as obvious in this light, baby.

There’s donuts over by the scale at the nursing station if you want one.

Jesus is the only doctor who knows it all.


Usually people like to talk about The Lord back in the Gowned Area, but yesterday it turned to politics.

That moron really needs to shut his mouth and go back to just being a trillionaire.

$65 dollars to see Dr. Cook—forget it! Who can afford that?

You stay strong.

Love you, sweetheart.

Is the sun shining out there today?


One thing that’s kind of crazy is that despite the multi-million dollar machines, the whole radiation protocol feels a little MacGyver-ish—they mark where the lasers should line up on your body with paint pens and sharpies, they make a mold of your torso out of foam and duct tape, they increase the radiation to the chest wall by wrapping a rubber mat over the place where your breast used to be with masking tape.

I like thinking about the scheming, practical mind that came up with all this.

You need some help with that? 

The good news is we made it through another day.

Be blessed.

I’m going to miss you.

Behave yourself.

Love you.


Twenty-one treatments down, twelve to go.

You got you a nice tan going, says one of the techs this morning as she examines your chest. Looks like that part of you has been to the islands.

Aloha! You say when they’re done, floating in your gown out of the nuke room, back toward the Gowned Area.

Aloha! the techs call, the three of them clustered in the hallway outside the command center in their light blue scrubs, two of them waving slowly like your cruise ship was just pushing off, the other looking past you, beckoning back the next patient.