Luck and privilege, passion and xanax.

It would probably make sense to say I’ve been radicalized about women’s health issues by getting breast cancer, but the odd truth is that I got breast cancer smack in the middle of my radicalization.

In the fall of 2013, at the hands of my friend Patrick and to my great fortune, I walked backwards into doing some freelance writing for the Center for Reproductive Rights, a global legal human rights organization that defends reproductive freedom around the world. It’s an incredibly exciting and challenging job.

We fight for expanding abortion rights, ending child marriage and genital mutilation, reducing maternal mortality rates, and improving access to contraception, accurate sex education, and reproductive health care—including screening for cervical and breast cancer. It’s not an easy fight–the issues are systemic and deeply divisive, entrenched in politics as well as cultural and socioeconomic biases, definitely not always dinner table conversation. But it’s a really good fight.

This past fall, with Benny starting Kindergarten and the world opening up a little bit for me, I was able to start working on a closer-to-fulltime basis. The Center is based in Manhattan, but I am able to work from my little desk here in Greensboro and dance with the amazing, high-paced New York (and Bogota and DC and Geneva and Nairobi and Kathmandu!) staff via Skype and phone and a zillion emails and occasional in-person trips.

I am the Center’s writer and editor, and a lot of my work comes down to story telling. Our lawyers and policy experts are engaged at all levels of the court system and on Capitol Hill and at the UN and a number of other international human rights bodies, so it can get pretty wonky at times. Amazing, but definitely wonky.

As part of the communications team, my job is to help engage our base by making our work a little more accessible to the average socially conscious women’s rights supporter. I get to focus on raising up the stories of the women whose personal experiences capture the big-picture efforts we exert across the globe. The 25-year-old woman in El Salvador who is serving a 30-year homicide sentence after suffering a late miscarriage. The clinic worker in Uganda who watches desperate women die from unsafe DIY abortions every week. The terrified immigrant mother in rural Texas who has found lumps in her breast but, due to drastic cuts in reproductive health funding and clinic access, cannot find a reachable physician that can see her.

I’ve even been able to share my own mother’s story—about her great relief at being able to get an abortion in 1974, shortly after Roe v. Wade legalized the procedure—so that she could go back to college and finish her degree.

Engaging with and trying to fully understand the complexities of these stories—the ten million valid reasons women do what they do and a system that can positively crush you if you are missing something as seemingly small as transportation, a social security number, or an extra month’s rent to cover the average cost of an abortion—has definitely changed the way I think about the world.

Two of the very first thoughts I had after receiving The Phone Call from the radiologist with my biopsy results was: Holy Moly, what if I hadn’t gone to the doctor when I felt that lump? and THANK GOD we have great health insurance. The first is luck and privilege. The second is straight-up privilege. And, well—neither insurance nor the accessibility of essential care should have anything to do with either one.

Tomorrow I go back to Duke for my second chemo treatment. This cycle has gone pretty well overall, so I’m hopeful about the next one—although I’ve been prepared that there is a cumulative effect. And it’s challenging to put yourself back in the path of something that makes you feel so diminished, on purpose—the gross sandpaper mouth, the crazy body aches, the constant undercurrent of fatigue, the eddies of nausea. At least last time there was an element of the unexpected.

I’m a little concerned about my ability to keep working through all this. Already I am working a really reduced load—and my bosses could not be more understanding and patient and supportive (another huge plus to working for a women’s health rights organization!)—but I work on a freelance basis, which means by the hour, and if I’m not working, I’m not earning. Yet, we still need to pay for afternoon child care and all the copays—and all our regular stuff. I have to keep working, for more reasons than that it gives each day meaning and focus—although it does.

Just this afternoon I received an EOB in the mail from our (great) insurance saying that I owe a $1371 copay on the $11,000 Nuelasta shot I had three weeks ago—and am about to have again this Saturday.

How do people do this? I’m not trying to bemoan our financial situation—we will be fine and are fortunate to have savings and resources and John’s job and benefits and generous people bringing us food constantly—but I know we are afloat on some piece of jetsum that we happened to bump into and the idea of being an undocumented, uninsured mother with lumps in her breast and no car or education or money in a rural border town in Texas where the nearest doctor is dozens of miles away and has no available appointments for months–what that means for her, her family; what it says about how we treat the most vulnerable among us–makes me feel like I’m going to have a panic attack.

Thankfully my insurance keeps me deep in Xanax.

I believe (when I fall in love with you it will be for ever).

Once upon a time in the early 80s my dad had an old white Datsun pickup that catastrophically overheated on the side of Rt. 128 somewhere north of Boston in a thunderstorm.

It was nighttime, and we were hauling a secondhand dryer my uncle had given us back from New Hampshire. It was also the ancient, venerable days when breaking down meant Walking Somewhere to Find a Phone.

I was about eight—not really old enough to be left in a truck at night on the side of the highway, even by a dad in a pickle in the 80s—so during a pause in the downpour the two of us set off into the long wet grass toward a smattering of dark houses not far from the exit ramp.

Everyone’s power was out with the storm, and it took a few tries before we found someone with a working phone to let us call my mom who was waiting for us at home and certainly starting to worry.  Then we trekked back out to the Datsun to wait in the truck until she came to pick us up.

It was still raining pretty good and the truck was still smoking a little bit, but the battery worked fine, so we cranked up my dad’s favorite cassette at the time—Stevie Wonder’s Talking Book. The windows were all fogged up and I still remember how the cab of that pickup smelled—a mix of sawdust and orange peels and dirt and coffee. Just like my dad.

I dozed a little in and out, my head lolling on the scratchy woven upholstery, with Stevie singing “I Believe When I Fall in Love It Will Be Forever” over and over again and then we’d rewind and listen to it again and my dad would get kind of falsetto and harmonize-y on the “I Believe” part and I was the most contented, up-past-my-bedtime, headlights-in-the-dark-counting adventure haver there ever was. And then my mom arrived in our little Volkswagen Rabbit and ferried us home safely to bed.

Freddy is about the same age now as I was at the time of that escapade.

I have been worried about him the last couple months—how he’s handling everything I’m going through, and on top of that his own diabetes diagnosis and hospitalization just a few days after mine. It’s a lot, and I’m sure he and his brother feel the stress. I’ve tried to be wide open with him about my cancer, the treatment, the parts I’m nervous about—to make it less scary. Not the capital F “Fears,” but all the smaller case ones for sure. I keep scanning him for signs of trauma, distress, anger. I ask him how he’s feeling about 435 times a day, fending off my own topsy-turvy guilt and fear and uncertainty.

The other day he was poking at the latest IV scab on my hand and we were commiserating about how sucky IVs are—far worse than the sticky stuff from heart monitors in his humble opinion—and he said, “Sometimes I miss the hospital so much I could cry.”

The hospital. The beeping machines. The sallow 3am light of the hallway. The narrow vinyl sleeping couch and paper sheet. My matted hair. My jumbled belongings on the chair, including the Pink Breast Cancer Tote I was handed by my doctor—literally—on our way to admitting Freddy to the hospital and still had with me. The pee jug I nervously watched for signs of ketones in Freddy’s urine. My son tangled in his tubes and wires. The four hours and 12 minutes when they thought he also had an undiagnosed heart problem. The endless parade of techs and nurses and doctors. That hospital?!

“I loved playing those video games the whole time,” he says. “And remember how you would climb in the bed and cuddle me at night and we would just talk?”

Oh. That hospital. The smell of his sweaty curls tucked under my chin. The way he would squeeze my hand whenever someone new walked into the room. The steady puffs of his breathing I hadn’t laid awake listening to since he was a baby and I was a delirious new mother.

So here is the thing: is it possible then that my dad wasn’t actually having the time of his life like I was, after a long drive to New Hampshire and back, dragging his kid to strangers’ houses and sitting on the busy shoulder of Rt. 128 in the rain and eventually abandoning his blownup truck and new dryer for the night? That instead he was worried and exhausted and barely coping? Does “I Believe When I Fall in Love” conceivably not evoke an exciting world of shimmery adventure for him? Does he not now sing it to himself alone in the car and every time feel happy and loved and excited about whatever might happen next?

A while ago, I asked him if he remembered that trip. “Oh, for sure. I was so wiped out when we got home.”

And a little after that I burned him a CD of Talking Book to replace his long ago busted cassette. The other night he had it on in the kitchen at his house and it turns out 30 years later he still sings along in the exact same croony way to “I Believe.”

Which makes my thinking go like this: When you fall in love with your kids, you fall in love forever. And that love forms the exact shape in the world of the cab of a beat-up Datsun on the side of the dark highway—filled with safety and Stevie Wonder and okay-ness. Or the exact shape of a single hospital bed with two figures nestled in it.

Which of course proves that no matter what, the kid is going to be all right.

‘Chemo Impressions’ is the name of a mix tape I will not be making.

This week I felt like a hotdog someone forgot on the grill, long after the cookout. Not lie-in-bed-moaning bad, but not my freshest and juiciest.

As I was warned, my taste buds are in a giant tizzy over this chemo business. For a stretch there the only thing that tasted right was coffee (thank god). I’ve completely lost the ability to taste salt. Many foods taste spoiled, or just wrong. On Tuesday, I even poured a glass of red wine into the sink after a sip or two because it tasted like furniture polish.

I have marked that day on my calendar as Darkest Day Number One. That particular unfortunateness seems to have passed, although I’m still being held to the one-maybe-two-tops-drink-a-week policy as decreed by the Queen.

So far, it’s not unlike being pregnant—your body feels like a foreign and inhospitable (yet intriguing) land. And, as my friend Melissa noted, at the end—instead of then being handed a passport to a new demanding, exhausting country of round-the-clock poopy diapers and yelling–with any luck you get to just not have cancer anymore. You maybe even book yourself a trip to the Caribbean.

My white blood cell count is suppressed from the drugs for a few more days, so I have steer clear of sticky grocery store cart handles and elementary school classrooms, but otherwise I believe I am on the upswing for this cycle.

Now the challenge is to try to pick up where I left off in my real life for a few weeks—to try to resume the normalcy of working, kid schlepping, exercising, laundry until the next infusion at the end of the month.

So, what was it I was doing? Who am I again?

In suspicious country.

In my favorite essay by Michel de Montaigne, he writes briefly but startlingly about his brother’s death at age 23 after being hit in the head by a tennis ball—the anecdote almost a footnote in the piece, but also an anchor:

“He did not sit down or rest, but five or six hours later he died of apoplexy caused by the blow.

With such frequent, common examples passing before our eyes, how can we possibly get rid of the thought of death; how can it not seem at every moment to be gripping us by the throat?”

Oh, Michel—yes. The very seat of anxiety.

Montaigne had so many encounters with death during his life in rustic, fractious, disease-filled 16th century France—a nasty horse accident head injury, a lifetime of debilitating kidney stone attacks, the loss of five of his six daughters in childhood, the sudden demise of his bestie in his arms at the hands of the plague, bands of roving thieves, and so on.

So he resolved to live with its presence. He wrote:

“As for death itself, it is inevitable. And consequently it frightens us. It is a continual source of torment that cannot be assuaged at all. There is no place which it may not come from; we may keep turning our heads ceaselessly this way and that, as in suspicious country.”

Suspicious Country—I believe I am learning to know that place.

Certainly, it is the far better name for a place I visited today—a little first-floor boutique up on Greensboro’s State Street called “A Special Place Wigs.” A chemo/cancer/hair loss specialty shop full of hats, bright scarves, wigs, appeasing creams, even sad little yellowing packets of eyebrow pairs shaped of human hair.

“When a horse stumbles, a roof tile falls, however slightly a pin pricks, let us immediately ruminate on this: ‘So, what if this were death itself?’”

When the scissor’s dry snips are brusque and sudden. When the clippers buzz on. When your new hair emerges sleek and orderly from a shoebox.

I love about Montaigne that, despite the ubiquitous roving thieves and constant political upheaval, he reportedly never kept his castle guarded. He left all his doors unlocked.  He acknowledged the terror that could come. But by considering it and allowing the idea of it in—he refused to shy away from it. 

“I want death to find me planting my cabbages, not concerned about it or—still less—my unfinished garden,” he wrote.

Now my hair is totally gone–well, not shaved, but buzzed. It was already starting to fall out. It was long enough to be able to donate to Locks of Love, so I did—that’s kind of weird and meta, right?

Katrina, the stylist, snipped it all away, and my friend Heidi took pictures. In the little backroom pseudo-salon at the wig store, we toured quickly through a whole array of Me’s that never were as she cut—the Mary Crawley bob, the mullet, the mohawk, the Melissa Etheridge concert.

I bought an amazing wig that I wore out to lunch afterward. I have no idea how much I’ll wear it going forward. It makes me feel a little like a bank robber and it smells weird. But maybe it is just a cloak for riding out into suspicious country.

So far, the kids don’t have a very high opinion of my buzzed head. Benny won’t be in the same room with me yet, and Freddy said, “Hmmm, it’s kind of how I’ve always wondered what Nightcrawler looked like and then I saw XMen 2 and I was like, ‘Oh, I see.’”

“Did you think you would never reach the point that you were constantly heading toward?” asks Montaigne, meaning death—meaning the way we sometimes freak when it seems to feel close.

I don’t say that meaning death actually feels close. In fact, I’m feeling pretty hopeful and strong and all that powerful stuff. But some days more than others feel like going to sleep with the castle doors unlocked, and this seems to be one of them.

In the treatment room.

I have learned from my seat in the smaller chair next to the plushy treatment chair through my mom’s prolonged chemo tour de force that there is something unique about the whole chemo treatment scene. It isn’t exactly zen, but it is different in kind from the rest of the medical scene. There is a kind of peacefulness there. Time moves a little differently. There is so much waiting, but also so much taking place. All the double checking and bracelet scanning. All the side effect management: zofran, steroids, saline flushing. All the please-repeat-your-name-and-birthdate. Do you need a snack? More water? And of course, finally the steady drip dripping of the meds through the IV.

It is surprisingly communal. No closed doors, no doors at all. Maybe a pulled curtain, a hushed voice. But in the end it is a large room of people waiting together to take in the poisonous stuff that they hope will make them better. There is laughter, the smell of french fries, IV’s beeping, ginger ale tabs fizz-popping open, texts pinging in from all directions.

Yesterday was my first time being the one in the plushy chair. It was weird, but mercifully uneventful. I had no allergic reaction to the first drug as I had been warned I might but probably would not–although I felt the keen eyes of the hazmat-suited nurse peeping in on me during the crucial 7-10 minute window. I had a little “wasabi nose” from the second bag of chemo–a weird burning in the front of the face like you just had a big too-quick bite of sushi, but it was minor. I got a little flush
ed from the steroids and zonked by the anti-nausea meds, but mostly I was just me, with John by my side in the less comfy chair. I sipped my water and munched my Lorna Doones from my serene little window-seated corner of the treatment room and watched the bags slowly empty into me. Then we were done.

This morning I feel a little crappier, but not terrible. It’s hard to know how much of the side effects are prompted by reading the side effect labels. I had to inject myself this morning with a needle of Neulasta, which will keep the blood counts up, hopefully, to help fight off infection. It gives you fluiness and bone pain, supposedly, b
ut so far I’m holding steady. My mood is boosted this morning by the results of Thursday’s PET/CT and bone scans that show no evidence of metastasis at this point. Yipee!! There’s some drama I’d rather not re-live anytime real soon. Of course, I am aware that is also my future.
Anyway–hanging tough here on Mendenhall Street for now. The hair goes on Monday–

my next hurdle. Mostly I am bolstered by the overwhelming kindnesses and friendships and thoughtfulness and generosities that you all have sent our way. It is truly humbling and already has changed me forever.

The queen of triple negative (or the second opinion).

That’s who the clinic coordinator at Duke Cancer Center told me on the phone last week I had the great fortune of getting squeezed in to see for a second opinion–the Queen of Triple Negative. Dr. Cavanaugh. She’s the big dog over there–and she’s only 44. There was no small amount of eye rolling in the coordinator’s voice, but there was also evident awe.

I think I knew right then Dr. Blackwell was going to rock my world, but all week I’ve been nervous. Just the idea of a second opinion makes me nervous. Like I’m getting diagnosed all over again. Plus going behind some other perfectly nice doctor’s back. My doctor friends have reassured me this is not how doctors feel, but still it seems to tread a little close to potential awkwardness. (And god forbid, as you grope my boob and discuss my sexual activity level, that anyone feel awkward!)

So I got over that. And today was the big day. And she did indeed rock my world.

Our first appointment was at 9:20 this morning and we didn’t leave the clinic until 6pm. Dr. Cavanaugh was pretty much as expected–smart like a knife is smart and fierce and knee-high black boots and Completely Together. She might be my polar opposite. She specializes in treating young women with breast cancer, particularly the kind I have.

John and I both loved her right away. One thing I particularly liked about her is that she said several times that she considered my cancer to be “highly curable.” No one had said anything like that to me yet. I also liked when she said she prefers to call chemo combinations “recipes” because “cocktail” makes her think about having a drink too early in the day and that’s hard. Maybe we are not polar opposites.

So, for a bunch of reasons that are highly technical and clever but still totally resonated with both me and John, she has a completely different plan for me than the other oncologist. That plan involves having chemo first with a somewhat conservative but highly effective “recipe” of drugs, then having surgery on whatever is left, and if there is cancer left, hitting it with one of the bigger gun chemo drugs at that point. Then radiation after all that. This is an approach they take specifically with Triple Negative Breast Cancers, which tend to be quite aggressive like mine and have lower survival rates if they spread or recur, but are also generally very responsive to chemo.

So, despite her using a Mike Krzyzewski / Duke basketball analogy to describe how her team functions (5 fingers forming a Fist), we’re going to go with the Queen’s plan. Which means now I have to break up with my other oncologist. Which means surgery is postponed until mid-summer. Which means in fact I’m starting chemo this Friday. Which means I’ll be bald next week. Which means tomorrow I go back for a PET scan and bone scan and start taking steroids and anti-nausea meds. Which means we are IN IT.

I can’t say I’m sorry. I’m ready to be in it.

The other 15,038.5 hours we were there today were spent having other scans (all good), talking to pharmacists, waiting, waiting, running into my mom and dad who were also at Duke today for my mom’s treatment (WHAT?!), more waiting, and meeting the rest of the “fist”–the radiation oncologist, the surgeon, etc. I liked all of them. The surgeon kind of made my day when he had a freudian slip when referring to something as being “my incision” instead of “my decision.” HA. You can’t make that up.

Now our brains are fried and we keep staring into outer space mid-conversation and I’m drinking a beer and trying to summon the courage to go back and face all this again tomorrow (in the ice/sleet/snow/rain/crap?!?) and John is taking unnatural refuge in looking at cute animal pictures on the internet (or maybe he’s catching up on work.). And it’s just another day in Cancertopia.

At chemo school.

Everyone is fiercely kind and painfully upbeat as we learn how not to eat rare tuna and how to tie a square scarf and what kind of mouth wash is good for mouth ulcers.

It is me and a friendly nurse and a number of other newly diagnosed cancer patients in their 70s and 80s all crowded around a table in a tight room in the bowels of the cancer center. There are so very many of us, actually, it’s kind of breathtaking.

“Are we having fun yet?” asks an obviously wigged and abundantly lipsticked lady as she fiddles with her cane. “I am!” pipes up her husband, winking at the nurse, then me.

We talk about the importance of condom use during mid-chemo sexual intercourse and everyone stares pointedly in my direction. I take furious notes in my binder. I underline condom twice, maybe three times.

“I have the c-word but the c-word doesn’t have me,” someone says and everyone nods.

Discussing the Chemo Shellfish Prohibition, a very elderly man in a golf jacket announces that he has a “sexual attraction to pulling the shell off shrimp by the tail.” “Oh for god’s sake–this again,” moans his wife. After a big pause, everyone laughs for real for real.

We recite the Cancer Center phone number aloud in unison, with gusto. We wish each other well.

We graduate. We’re ready for the big leagues.

A brief reminder of things to come.

Written by John.

So Nina has planned some medical interventions this week. On Wednesday morning, we are going to Duke Medical Center to talk to a doctor who’s, like, a certified genius or something in breast cancer. Seriously, she was listed as one of the most influential minds on the planet. She focuses on cancer in younger women, so we’re going to ask her some questions and make sure the track Nina’s on is the right one. A second opinion. And just a way to gather more information. If she has something really different to say, we may have to rethink some or all of the current plan. We are not expecting her to say something radically different, but you never know. And, as noted, she wields an enormous amount of influence, so who knows what she’ll convince us to do? We may wind up donating our entire fortune to Duke Medical Center. Boy would they be disappointed.

That same Wednesday, she also has an appointment with her current oncologist in Greensboro. So, if you’re wondering why we’re not answering your calls on Wednesday, it’s because we’ll be drowning in oncologists. This appointment is a follow up and hopefully a chance to confirm when Nina’s chemo will start. Since her surgeon had to delay the surgery, the chemo will also have to be delayed a bit to allow her time to recover. I suppose it’s possible we’ll have already decided based on the Duke visit to go in a completely different direction. But, like I said, that’s not the most likely outcome.

Once we have all the oncology information we can stomach, it’s time to get ready for surgery on Friday morning. Nina has an appointment first thing that morning to have a wire placed in her breast at the breast center, which will be a marker for the surgeon to show precisely where the area is located (there is not any sort of obvious mass, so this part seems particularly important). The problem is, once she has the wire placed in her breast, which we understand is in actuality just as pleasant as it sounds, she has to go across the street and down the road a piece to get to the day surgery building. Apparently they don’t have mammography equipment in that building. So we’ve got that going for us. Which is nice. If you’re looking for us on Friday morning, we’ll be the couple with the bloody boob and the glassy eyes hobbling down Church St.

Apart from updating on the actual events, I guess I just wanted to write in the journal because this week feels like finally the end of the waiting phase and the start of the “sh!t gets real” phase. Surgery, followed by three months of chemo. It seems like a real departure. Maybe it won’t be. Maybe it’ll just be pretty much like our normal lives only Nina will be a bit limited and we’ll carry on pretty much as we were. I hope that in a couple weeks the updates here will be all about how surgery was a breeze (that wire? It was like a cool accessory from Anthropologie! The surgery? Like mild acupuncture? Chemo? A spa treatment.). But, given that when I have a sore throat my whole life feels like it’s been thrown into disarray, I kind of doubt it. But even if I assume it’s going to be a total cluster, I still have no idea what it will look like. What kind of cluster are we expecting, exactly? Is this Watergate or Inflategate?

Apart from the generalized fear of the unknown negative experiences to come, I’m pretty terrified for Nina. She’s not only got to deal with all the unknowns (will chemo be horrible? Will surgery recovery be quick and easy, or prolonged agony? Will the cancer go quietly and be a blip in an otherwise healthy life, or will it be a lifetime mortal battle?), but she actually has to be the chemotherapy patient, surgical pincushion, and c-word bearer through the whole event. She’s pretty tough, physically and existentially. Much tougher than I am, if our respective responses to prior illnesses and life events are any indication. So that gives me great hope. But then I guess what really scares me is not that she can’t handle it, but that I have to watch her deal with all of it (with all of my aforementioned lack of intestinal fortitude).

I keep hoping that cancer is more like a class-action lawsuit than an actual medical diagnosis, and that at some point Nina will just be able to opt-out. But she’s the one who has actually filled out all the forms (I’m spectacularly bad with forms. She normally fills out my forms so that others may read them) and she assures me there is no such provision. So, in the absence of that, I guess we just have to grit our teeth and bear whatever’s about to happen. But I don’t have to like it.