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.

 

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.