Sunday, September 18, 2016

Descriptive Writing 101: Relationship-Based Description

One of the fundamental building blocks in good descriptive writing is what I think of as "relationship-based" description (or, sometimes, "reaction-based" description). This piece from our descriptive writer's toolbox packs a double punch, because not only does it allow us to show our world to the reader in a more vivid way, but it also allows us to take our characterizations much deeper—and, ultimately, characters who feel deep and with whom readers connect on a deep level are the heart of any impactful book.

So what, you ask, is relationship-based description?

Pull up a chair, friends, and let's explore this concept.

In every scene, you'll have a point-of-view character, whether that's your book's protagonist or somebody else. You'll have a point-of-view character even if you're writing in third person—and in general, the more dialed-in to that POV character you are, the more invested your reader will be in the scene, too. (This is true for everything except 3rd-person omniscient narratives, but I'll make a sweeping generalization and say that in most genres, close 3rd-person is much, much more effective.)

In the best descriptive writing, all of the observation and description in the scene is filtered through the POV character's worldview. This means that what they notice at any given moment will be influenced by everything from their background, lifestyle, and childhood experiences, to their current occupation, current mood, and current goal.

Everyone in a scene will react to stimuli differently, just as we do in real life; for example, as a musician, I notice very different things when I'm sitting through an amateur musical performance than one of my friends, who doesn't have musical training, does. Likewise, as a mom, when I'm out with my daughter I notice things differently than I did before she came along—I'm much more attuned to how situations could become dangerous (don't run out into the road! Don't touch the hot stove!) and also tend to notice things that are at waist-level and below much more than I used to. And I could go on; for all the different aspects of who I am (writer, disabled person, etc.), there are ways that that identity affects the way I process things around me.

Keeping these character-specific filters in mind boosts both the punch of your descriptions and the depth of your characterizations, making it doubly awesome.

Recently I read Julie Berry's THE PASSION OF DOLSSA (which I highly recommend), and couldn't help but mark this beautiful passage, which is an excellent example of what I'm talking about:

Harvest frolics were known for this. All those tozets with their lusty eyes upon her, her buoyant chest bouncing practically into her eyeballs, and her skirts tucked up and pinned over her bottom... Of course she would feel herself in a mood to pick one of these young men, like a grape off the vine, and crush him against the roof of her mouth.

In these few lines, we're given insight into so many things: how the narrator feels about the girl she's describing, how the girl treats her suitors (isn't that line about crushing them on the roof of her mouth absolutely perfect?), what role the grape-harvest/winemaking plays in the culture of their village. Berry could have just written something like this:

Astruga was a good-looking but shameless hussy who moved from boy to boy and then left them, flaunting her attractive body to reel them in one after another.
We'd still have had all the pertinent information about the character in question. But the way it's presented now, we have so much more than that—we're pulled deeper into the world, deeper into the head of the POV character, and deeper into the author's lush and beautiful voice, all at once.

In my original draft of this post, I had two original examples written out to show how this sort of relationship-based description can be used to convey a character's mood and backstory. Unfortunately, my computer rudely ate it, and I was never able to remember what those examples said well enough to rewrite them (doggone it! I was really mad!). For more examples, though, I highly recommend checking out this post by the inimitable Maggie Stiefvater, in which she talks about using literary devices to tweak reader emotions and breaks down some great examples of relationship-based description from The Dream Thieves.

So, lovely readers, here's your challenge for today, if you choose to accept it! Choose a character, a setting, or an object that you'd like to describe, and also choose a relationship (between two characters, between a character and himself, between a character and an object or setting) that you'd like to highlight. If needed, make a brief list of ways that that relationship might affect the way your POV character sees the thing/person/place you're trying to describe. Then get out your pen and write a paragraph (or more!), choosing your descriptive words carefully, putting yourself as deeply as you can into the viewpoint of your POV character.

Alternatively, if you'd like to practice but you're having trouble coming up with something to use, here's a prompt: Pick one setting and one relationship from the following lists, put them together in some descriptive writing, and see what you can come up with!

Setting:
A moss-covered forest
A crowded suburban Super Target
A mountain trail
A high school hallway
A kitchen
An urban backyard patio
A farm

Relationship:
A character who's about to break up with his/her significant other
A character who's about to propose
A character who resents his/her mother
A character who's obsessed with a specific possession
A character who's got PTSD after a bad car accident
A character who feels inadequate at everything he/she tries

Friday, September 16, 2016

Descriptive Writing 101: It's Way More Than Adjectives, Baby

This forest is lush and green, with trees that are towering and stately
as they preside over the sinuous stillness of the river!
#WhatNotToDo

This summer, while preparing feedback for authors who subbed to me for Pitch Wars but weren't chosen, I started noticing that I was saying the same things to many of them:

"Use fewer adjectives."

This, I admit, gave me pause. I'm a descriptive writer. Lyrical, immersive, setting-as-character writing is what I love, and do, best. I love to read and write prose that sings off the page, so vivid that I'm not just visualizing the scene, I'm there.

And aren't adjectives synonymous with "description"?

The answer, as you've probably guessed, is "Yes, but no." Adjectives can be great. Think about adjectives like sizzle or protruberant or hushed. Each of those words packs a punch in just a few syllables, conjuring up just the right image or feeling in your mind as you read them. Strong adjectives (and it's important that they're strong!) are, without a doubt, a vital tool in a descriptive writer's toolbox.

Still, when you're striving for immersively descriptive prose, adjectives are merely the tip of the iceberg. Much of the time, adjectives function only at the surface layer: they do an adequate job of telling the reader what to picture, but they don't grip him by the lapels and drag them right into your book. And often, having too many adjectives—especially if they're clustered all together in one sentence or paragraph—can actually pull the reader out of your story instead of taking her deeper.

Descriptive writing is made up of many things: adjectives and adverbs, of course, but also sensory awareness, metaphor and objective correlative (sort of an extended metaphor), and a character's reactions to and relationships with the world around her. Ideally, your descriptions should be a balance of all of these things. The best descriptive writing is also unique: It's putting words together on the sentence level so that instead of skimming over the page, your reader shivers and is pulled further in to the story. You want her to see the comet fall, to feel the frisson of tension across his skin, instead of just noting that those things happened and then moving on.

In talking about this recently on Twitter, I used this example:

"The mood in the room was tense."

This tells us, obviously, what the atmosphere of the room was, but it doesn't give us a lot more than that. We're already reading on to the next line.

Adding another adjective doesn't do much for it, either; if told "The mood in the room was tense and edgy," we still aren't necessarily feeling that tension curling into our own bones.

On the other hand, if we read: "The room held its breath, the walls themselves pulled as tight as strings"—which of those examples did you feel the most? Which resonated most deeply inside of you, and made your breath catch in your throat, just the way the protagonist's breath ought to be catching right about now?

In that instance, I was able to pull in metaphor to describe the mood of that room in a way that was just different enough to (hopefully) make you feel it much more deeply than you did when I simply said that the room was "tense" or "edgy." This sort of example becomes even more powerful when paired with other tools of descriptive writing—and, in my opinion, it's one of the crucial sentence-level things that takes a good story and makes it a transformative one. Many current award-winning novelists, like Maggie Stiefvater and Shannon Hale, are true masters of this, and reading their books and others can be a great way to pick apart techniques for use in your own writing.

Over the next couple of posts, I'm going to be breaking these ideas down into more digestible chunks and sharing blogs on metaphor, objective correlative, relationship-based description, and sensory awareness. I'll try to pull in lots of examples and writing exercises as well, since I know that's how I personally learn best. So pick up that pen (or keyboard) and join me for the ride!

Part 1: Relationship-Based Description
Part 2: Building Strong Metaphors
Part 3: Describing Emotion Through Objective Correlatives
Part 4: Adding Sensory Details

Wednesday, September 7, 2016

the holy midnight work

Canning peaches with Kate

It's hot here in the darkness; damp hair clings to the back of my neck, my clothes feel oppressive and close. The baby pressed against me is warm, a tiny sun who heats the room as we pace the floorboards, bouncing without pause. He arches his back and whimpers, miserable and restless, his nose stuffy and his hands twitchy.

He's not mine, of course. His mama sleeps a few rooms away, and I am only the fill-in, the relief effort. Still, the deep parts of my body remember this, the feel of a baby held just so, pulled tight against me to soothe the restive kicking, the way his arms keep jerking a few minutes after he's finally fallen asleep, his body fighting even after the battle is lost.

It's still in the house: only the two of us are up and moving, locked into our little dance. Iron & Wine plays quietly in the background. My thoughts are slow and centered. I am present in this midnight moment in a way I'm so often not in the sunlit busy ones.

Sometimes it sneaks up on me, this unexpected holiness. Sometimes, in the in and out sandwich-making shoe-finding swing-pushing minutiae of mothering, I forget what mothering really means: Holding another soul in my arms, being the buffer between her and the world as she learns to navigate everything from the proper use of a toilet to the complex and overwhelming universe of her own emotions.

Sometimes I'm so overwhelmed myself that I can't feel the holiness at all—but still, it's there, creeping up on quiet baby-bouncing nights to remind me that oh, this work is deep and wide and sanctifying.

There is much to mothering: to mother is to teach, to discipline, to do strings of endless physical laundrydishescleaning tasks that extend into eternity. But I think, in these quiet hallowed moments where morning is closer than midnight, that really mothering comes down to this: being there open-armed, ready to hold space for the sick baby who can't sleep, the panicked preschooler who can't stop sobbing. Holding them here in the darkness, the warmth of their skin on ours. Whispering over and over: It will be okay. It will be okay.

Finally, as Elizabeth Mitchell croons to the gentle hum and wail of a harmonica, the baby in my arms falls into sleep, his mouth soft and slack, his breathing loud and congested. I sink into the couch, let my own eyes close.

I don't often feel the holiness in this work that is motherhood, I think as the stillness enfolds me. I don't always see it.

Still, it's always there.

Tuesday, August 30, 2016

Your Beginning Is A Promise—So Don't Break It!



I have the privilege of being a middle grade mentor for Brenda Drake's incredible Pitch Wars contest this year. The revision period has only just begun (and I'm so excited for both of my mentees!), but already being on this end of the contest has been really illuminating—getting to read so many wonderful queries and first pages, as well as several partials and fulls, was something of a master class in identifying common issues that were very helpful to see both in terms of being able to guide other writers through making their books stronger, and to keep in mind as I revise my own books!

One thing that I noticed in several of the partials and fulls that I read was a disconnect between the beginning (in this case, usually the first 1/4-1/3) and the rest of the book. I saw a lot of books in which the first section of the book had a very different feel, and often a completely different setting or even a fairly unrelated plot, than the rest of the book. To an extent, this is normal and even necessary—the first quarter of your book helps to establish your character's "normal world," and is all about presenting your character before they've experienced the life-changing plot turn that happens about 25% into your book.

Still, as a reader and as a potential mentor, I found myself several times falling in love with a book's beginning—only to, a few chapters later, have the book change so much that many of the things that had attracted me to it in the first place were no longer present. What I realized as I read was this:

The beginning of your book is a promise to your reader. In it, you promise them specific things, and if you deviate too far away from those things, it will feel like a broken promise and result in an almost-always unsatisfying book. (Sometimes, writers do this intentionally, and that's a whole different kettle of fish—but know that if you choose to make promises and then break them, your reader will probably feel unsatisfied. Which is a fine emotion, as long as that's what your goal is.)

So what kinds of things, in my opinion, need to stay consistent throughout a book in order for your reader not to feel betrayed by the promises made in the beginning?

1. The type of book you're writing. This one's pretty obvious—and, again, sometimes this rule is broken—but it's a big one. If a book reads like a rom-com for the first half and then turns into a slasher horror halfway through, your reader probably isn't going to be super happy with the transition. That's an extreme example, but it's true on a small scale, too; if your book begins as a quirky exploration of humanity's foibles a la Gilmore Girls but later shifts to be a serious emotional story with nary a laugh in sight, your readers are going to close the book thinking "Now, how exactly did I end up here?"

2. What kind of character your reader's going to be identifying with. You don't have to give away the character's whole arc in the beginning, but you should make sure that we have hints. Give us glimpses that show us where your character is right now vs. where they're going to end up. In a typical growth-oriented character arc, this means that you need to start out by showing us your character's false beliefs about themselves and the world around them, and also give us hints about the kind of person your character could be if they were willing to let go of those false beliefs. These hints can come through comments from secondary characters, through secondary characters who act as foils, through media your POV character consumes, even through literary devices. However you do it, though, we need to feel grounded in both who the character is now and who they have the potential to become, so that as his or her character arc unfolds throughout the story, we're satisfied rather than unmoored by his or her transformation.

3. What kind of literary devices you'll be employing in your writing. This is a big one, but not necessarily something I'd have thought of before reading through my Pitch Wars slush. There were several partials and fulls I read whose beginnings were filled with beautiful sensory detail, vivid settings, and characters who jumped off the page—but then, at that 1/4-1/3 mark as the plot took off, much of that immersive and engaging writing dropped away. While it's very common to have a dramatic setting change around this point in the book (anything from a move to a literal quest), make sure that you're still employing the literary devices you used to make the first section of the book come alive, even once your setting has changed.

If your character loves to sing, and you used his passion for singing to help readers connect with him in the first quarter, make sure that that's carried through later on as well. If losing his voice (literally or figuratively) is part of the plot, make sure that you still give equal weight to that passion anyway—even if he can't sing, he can think about singing, wish to sing, see the world through a musical lens, cringe every time the radio comes on because it reminds him of the thing that was taken away from him. If your setting in the first quarter was filled with sensory detail and a strong sense of place, but then your character moves somewhere else very different, make sure that you're still employing a similar descriptive style to immerse us in the new setting.

4. What the basic goal of the plot is. As mentioned earlier, many plots actually require making some big changes to setting, characters, or goals after that 25% mark. However, it's important to make sure that you're still telling the same story. In several of the fulls I read for Pitch Wars, the character's actions and goals throughout the first quarter were really only very loosely related to the goals of the plot as a whole; instead of setting us up for the coming plot arc, the first quarter, instead, told a mostly-different story that centered on different things. In every case, this left me feeling a little bit let down after finishing the whole book. But wait, I'd find myself thinking. I really liked that beginning section—whatever happened to that story? Even as you're pulling your main character out of their "normal world" and starting them on their quest to become the best version of themselves, it's important to keep control of your overall plot arc and make sure that your first quarter is still setting things up for the story you're going to tell, not for a side story that won't have bearing on the final outcome of the book.

A related, and very important, piece of advice is to make sure that you're beginning your book in the right place. I often find it helpful, after I've finished drafting a book, to take a hard look at my first chapter and make sure it's really living up to its potential. Typically? It's not, and I have to revise it at least some of the way, if not scrap it altogether. With my last book, I had an opening paragraph that I absolutely adored, and all my critique partners did too... But in the course of revising, I had to face up to the cold hard truth that it wasn't pulling it's weight. That beloved opener got scrapped and replaced, and the first chapter was much stronger as a result. (Maybe in the future I'll do a blog post specifically tackling first chapters...)

Now it's your turn! Tell me: What do YOU think a beginning needs to do in order to make promises you'll be able to keep?

Tuesday, August 23, 2016

Rewriting Is The Heart Of Writing


I've been writing for as long as I can remember, and I got serious about writing novels many years ago. For a long time, I figured I was ahead of the curve: I wrote my first novels as a teen, had studied what it took to be published, read voraciously and had learned to apply techniques from my favorite books to boost the quality of my own prose.

But there was a big, huge part of the puzzle that I was missing that whole time:

Rewriting.

Not just revising in the way I used to think of it—rearrange a scene here, fix some typos there, streamline my timeline and call it good. It wasn't until the last two years that I truly learned how to rewrite: How to dig deep, find the heart of my story, and then change anything that is necessary in order to reveal that heart to its fullest extent.

And, not at all coincidentally, it wasn't until I learned how to do that that my writing started getting noticed in ways that ultimately led to an agent.

Recently, we got a new piano after a year of being without one. (Hooray!) Music runs deep in my blood, so you can imagine how happy that's made me. In the first few weeks after getting it, I played every chance I got, combing both my sheet music and my memory for songs I enjoy. One of the things I found myself playing was from my teenaged music composition days—a flowing piano solo that I worked on for a long time before it ultimately went on to place in a national music composition competition. I remembered as I played it how much I especially love one section of it—a minor-key bridge whose stormy restlessness is meant to, and for me does, evoke the feeling of the ocean.

I've always found it interesting that, of the whole piece, that's the section I like the best, because for a very long time it wasn't part of the song at all. The rest of the song is gentler, in a major key, and fairly repetitive. As I was working on it, my piano teacher kept telling me that I needed a section that took the motifs I'd used throughout and made them new and different, instead of just repeating the same melody with a few small changes. (He was right, of course, and that inability to get myself too far from a single motif is why I never became a composer!) I went back to him and back to him, asking if a new idea I'd had was different enough, and he always said no. Until, one day, I was messing around and boom. The new section was born. It pulled the whole piece together and made it a hundred times better—and now, more than a decade later with my musical skills at least a little further along, I recognize that it's by far the most sophisticated part of that piece.

As I thought about the story of how that song came to be, it occurred to me what a perfect metaphor it is for any creative endeavor, writing included. Often, what we initially start out with as writers scratches only the very surface of an idea. Just as often, it takes us going back again and again to that idea in order to really dig deep and bring up all the emotion that we can from it.

And this is what true revision is: Going back to our story and asking more from it than we did originally. Being willing to look at the possibility of making big, dramatic, terrifying changes, if those changes will more fully reveal the heart of the story. Being willing to sacrifice anything—characters, plot points, favorite scenes—to get to that point.

I have a young adult novel that is, without question, the book of my heart. All of my books have pieces of my heart, but this one dials deeply into my soul more than anything I've ever written. The setting, the characters, and the themes all speak to really deep parts of myself. Last year, once on my own and once with a mentor as part of Pitch Wars, I revised that book on a large scale twice. The second was especially big—during Pitch Wars, I gave that manuscript a dramatic overhaul, so that it was hardly recognizable as the same book it had been to begin with.

And then it didn't get me an agent. These days, about eight months after shelving that book, I can see why not, and I can also see that it's not ready yet for the YA market. It's been on my mind again this summer, though, and within the next year I'm planning to overhaul it yet again—what will likely be the largest revision yet. This time, I'll be taking an axe to the actual plot, and when it emerges I suspect that once again, it will be an almost entirely new book (one which will hopefully have a chance at marketability!). It's a little daunting, thinking about revising this book so heavily another time, but it's also exciting—because I know that there's still more, thematically and emotionally, that I can pull from this book than I have in the past.

This is what I wish I'd known, years ago as an experienced-but-still-totally-green writer who thought she knew everything: I wish I would've known that truly, the heart of writing is rewriting. Drafting is fun, and streamlining is crucial. But most books will, at some point, need more than a quick-and-dirty revision to clean things up. Even if they don't need such a dramatic overhaul as my YA novel (most books don't, and mine since then haven't), it's quite likely that there are parts that will still need true rewriting. With the middle grade book that got me my agent, I cut several characters, changed the timeline of the book (and therefore the plot structure), and added in a whole magical realism element that wasn't there for most of the first draft. And, as hard as it was to do some of those things (my very favorite character went on the chopping block!), it was right.

So as you sit down to revise, never fear those big changes. They might just uncover the true hiding place of your story's heart.

Sunday, May 29, 2016

How I Got My Agent


For the last two years, I've been working hard on getting an agent. (If you're not sure what that means, go read this post!At times it's been so soul-suckingly hard that I've come close to quitting writing altogether. In that two years I queried three books and racked up a total of 145 rejections, 112 of which were all on the same book (that was especially soul-sucking). After querying that second book for the better part of a year and getting lots of interest, but having every single one of those interested agents eventually pass, I was at an all-time low point in my writing career. In February, I came genuinely close to just giving up on my fiction, and really the only thing that stopped me was the fact that I've tried to quit before and always been lured back by the siren song of storytelling.

Instead of quitting, I slogged my way through revisions on a new novel—a middle grade (ages 8-13) magical realism book called WHERE THE WATERMELONS GROW—and, when it was as good as I could make it, I started querying that one. I sent out my first few queries in mid-April, and got a couple of full requests right off the bat, which was exciting but not nearly so exciting as it would have been had I not had the sad experience of 21 full requests all turning into rejections on my previous book. I oscillated wildly between hopefulness and despair, convinced I'd never be able to write a book that consisted of more than just pretty words (my strong point).

A week after I started querying I entered a Twitter pitch contest called #DVPit. During a Twitter pitch contest, authors craft a brief pitch (it has to fit into Twitter's 140-character limit, including hashtags that identify it as part of the contest) and tweet it several times during the day. Agents who are interested in whatever genre or specialty the contest emphasizes can scroll the Twitter feed for the contest hashtag, and favorite posts for books that they're interested in seeing. #DVPit is a brand-new, very unique contest, focused on diverse stories by marginalized authors (including disabled authors). I entered #DVPit hoping for the best, and my expectations were wildly exceeded: By the next day, I'd had requests from 21 agents.

The next four days of my life were comprised of quite possibly the most nail-biting anxiety I've ever experienced. By the fourth day, I'd hardly slept and had managed to scratch the skin off one of my fingers and one of my kneecaps through sheer nervous habit. By the morning after I'd finished sending materials to 17 of the 21 interested agents (who typically wanted to see a query and first few chapters, but sometimes requested a partial right from the contest), I'd had five full requests in less than 24 hours. The next day, I had an e-mail from an agent who was part of the way through my book, loving it, and wanted to know what other projects I was working on. While that sort of e-mail doesn't always turn into an offer, it often does, and I'd never received an e-mail like it before. The next 24 hours felt agonizingly slow, and it was all I could do to avoid checking my e-mail every two seconds.

And then, the next day, I got another e-mail from the same agent, asking to set up a phone call.

As you can imagine, the time between that e-mail and the actual phone call (blessedly only the next day) was yet more stress and anxiety. Right before she was scheduled to call, I was certain I'd either throw up or pass out. But then the phone rang, she made it clear within the first few minutes of our call that she was offering representation for WHERE THE WATERMELONS GROW, and we had an absolutely delightful chat. And just like that, I was on to the next stage in my writing journey.

Because I had so many other agents still reading all or part of my book, the traditional thing to do was to e-mail them all notifying that I'd had an offer and would be making my decision on a specific day (I chose a day 10 days after my first offer). I spent several hours after that first phone call sending out my nudge e-mails. Within minutes, I started getting more requests from agents who hadn't had a chance to see the full before now but were interested in reading. By the next day, I had a second offer from another stellar agent... and nine days later, by the end of my deadline period, I'd had a whopping seven more offers (for a total of nine). When a tenth agent offered two hours after my deadline passed, I no longer even had time to take her phone call. That ten days was hands down the craziest, most exciting, most overwhelming, most shocking experience of my life. To go from being the girl with 145 rejections to being the girl with 10 offers was beyond surreal.

Due to the large number of offers I'd had, I ended up needing to take a few extra days to make my decision. And it was tough. All of the agents who had offered were top-notch, and many of them comprised my list of "dream agents", the kind of people I never in a million years would have dreamed would offer on my book. The enthusiasm and love they'd all shown for my story was absolutely unreal, and winnowing my options down felt impossible. 

On the very last day of my decision period, one agent started edging to the front of the pack. She was incredibly kind, had an unbelievable reputation in the industry, and her ideas for how WHERE THE WATERMELONS GROW needed to be revised lined up very well with my own ideas about the book's weak spots. She also was very accessible and supportive, and a fast reader—things that were important to me. The clients that I spoke to raved about her (including one who happens to also be one of my critique partners and very dear friends!) By the end of the day, I knew that I'd made my decision, and I accepted an offer from Elizabeth Harding of Curtis Brown, LTD. 

Any of the agents who offered would've been incredible advocates for my book, and it broke my heart into tiny little pieces to have to send so many rejections (I have no idea how agents and editors can survive rejecting so many people all the time!!!). But Elizabeth's vision and enthusiasm for my story have been infectious, and in the few weeks that we've been working together I've already been amazed by how efficient, focused, and kind she is.

To finish this post, here are some ridiculously detailed stats, because that's what I always want to see on other peoples' agent posts:

24 cold queries sent
4-5 full requests before I entered #DVPit (One was a referral and the agent asked for the full as part of the referral, so not sure if that counts)
21 contest requests, 17 sent (some were from the same agencies)
5 contest upgrades before offer
6 contest upgrades after offer nudges
7 query full requests after offer nudges 

Total offers9 offers within deadline, 1 two hours after deadline, 1 R&R the next day. (5 of the offers were from the contest, 5 offers and the R&R from query nudges.)

Thursday, January 1, 2015

Orkambi in Pregnancy

At the beginning of the month, the FDA approved Orkambi, Vertex's second drug that treats the underlying cause of cystic fibrosis. Unlike Kalydeco, which treats about 5% of the CF population, Orkambi (which is a combination of Kalydeco—ivacaftor—with another ingredient, lumacaftor) could eventually treat 50-60% of CF patients worldwide, which is pretty huge. I have several friends who have already received Orkambi and started taking it. While it's not as universally helpful as Kalydeco and there are some patients who don't see much difference in their health except for becoming more stable, it's still really thrilling to watch it starting to roll out.

Long before Orkambi hit the market, I started getting e-mails from women and occasionally men who were hoping that Orkambi (previously called VX770/809) would help them but wondering about its safety profile in pregnancy. I totally get this, since one of my big concerns before and after Kalydeco was released was how it would effect a fetus, since I had been trying to get pregnant for about a year and a half when I started taking Kalydeco. For a long time I didn't have anything to say to these curious people, because Vertex didn't release any of its data from rodent studies of pregnancy and lactation until Orkambi was FDA approved. Now, however, they have, and since I'm getting this question even more I figured I would make a handy dandy blog post that shared all of the information I've been able to find.

A quick recap: Why I stayed on Kalydeco (and why I can't tell you if you should stay on Orkambi!) while pregnant
(For a more complete picture, read this blog post)

Let me start this post with a big fat disclaimer: I am not on Orkambi, I have never been on Orkambi, and I can't tell you if you should try to get pregnant on it or not.

There are so many factors that go into making huge decisions like these, and the clinical safety data is only one small part of the puzzle. I've heard from women who have decided to stay off Orkambi until they get pregnant and then start it, which is great. Had I been less fertility-challenged than I was, I might have done the same thing with Kalydeco when it was first released. However—and this is a key part of my story—I'd already been trying to conceive for a year and a half when Kalydeco became available, and at that point I was nearly menopausal at twenty-three because my hormone levels were dangerously low due to the stress CF put on my body. I considered it dang good if I had four menstrual cycles a year, which is a condition under which it's next to impossible to get pregnant.

The way things were going, we were staring down the barrel of a long-term infertility problem, and my doctor and I both felt like waiting to start Kalydeco until after I gave birth was unwise because that could potentially be a very long time down the road. Also, although my lung function was high, I had had a very rough and unstable couple of years in which I was hospitalized regularly and spent most of my time feeling very sick. Had my lung function been more stable or my overall health been better, I might have decided to wait.

So I think it's important to remember, if you're in the position of trying to decide whether to roll the dice with a brand-new drug and pregnancy, that there are a lot of factors going into it and that you have to ultimately do what you feel most comfortable with. What I chose to do was not necessarily what my doctor was most comfortable with (see my original blog post, linked above), but it was what my husband and I felt was right after much soul-searching, prayer, and research.

Orkambi's safety data, and why those myths you've heard aren't true

And now to the good stuff: How safe IS Orkambi in pregnancy?

While the VX770/809 trial was happening, there were years' worth of rumors about how unsafe the combination was going to be for pregnancy. The study required two forms of birth control, and had very strict rules about being disqualified from the study if you discovered you were pregnant anyway. Because of this, a lot of people started hypothesizing that 770/809 was extremely dangerous to a fetus and already known to cause birth defects. This always seemed very fishy to me, but at that time Vertex had not released any of the data from its rodent studies, and so I couldn't ever completely dismantle the rumor mill.

However, there are two things it's really important to understand about Orkambi: First, that every drug trial will require birth control. (And if they don't, they're not very ethical, or it's a drug that's been on the market for a long time and is just being used in a new way.) This is for two reasons—because it's highly unethical to try an untested drug on a pregnant human, and because many medications can interfere with hormonal birth control and no researcher wants people accidentally getting pregnant during her study because it turned out that the new drug interacted with a patient's birth control pill. I was offered the chance to be in the original studies for Kalydeco, and the requirements were exactly the same. Two forms of birth control. Immediate disqualification if you were found to be pregnant.

The second thing that's important to understand is something I already said above, but I'll say it again: None of the data from the rodent studies of pregnancy and lactation had been released for Orkambi until it was FDA approved. Therefore, all the rumors that Orkambi caused terrible birth defects were just speculation.

Now that the data has been released, it's very easy to find: It is in every package insert in every box of Orkambi, and also available online here. And guess what? Just like Kalydeco, Orkambi has been given a Category B rating by the FDA, which means it's unlikely to cause harm. Although it hasn't been tested on humans (because, again, that's highly unethical), none of the rodent studies (during which rats and rabbits were given many times the human doses of both lumacaftor and ivacaftor) turned up any birth defects or other issues with the pregnancy, although both drugs cross the placenta and are excreted in breastmilk.

My own experience with Kalydeco is that some doctors are very trusting of the Category B rating, and others (like my own doctor at the time) don't feel like it means much at all without the human data to back it up. However, to put it into perspective, most CF drugs are actually rated Category C (a slightly higher risk of adverse events in pregnancy), including things like pancreatic enzymes. My point there is not that Orkambi is necessarily safer than enzymes, but that almost no CF drug is without some degree of risk in pregnancy.

So what should you do?

Only you, your doctor, and your partner can make that call.

Were I in the same position I was in before starting Kalydeco—infertile, unstable, and frequently ill—I would probably choose to start Orkambi and stay on it during my pregnancy. Personally, I would probably not choose to start Orkambi and then stop it later if I found out I was pregnant; although I did consider doing this with Kalydeco when it was a brand-new drug and not much was known about it, I've since heard several stories of people who stopped Kalydeco for one reason or another, ended up getting really sick, and never were able to get back to the health they'd experienced before once they resumed their Kalydeco. It's a phenomenon my previous doctor noted too—he went so far as to say that he felt like even one missed dose of Kalydeco can have serious adverse effects. I don't know if Orkambi will be the same, but it's similar enough that I personally would probably not risk it, because the beginning of pregnancy is a time when you want your health to be at its peak, not taking a huge hit.

And, before I go, one last thought: I've had several women tell me that it's so much scarier to think of taking Orkambi in pregnancy than Kalydeco, because there are so many anecdotal stories of Kalydeco being safe in pregnancy now. And that's totally true. But it wasn't that way for me, or for the other women who got pregnant on Kalydeco immediately after it was released. There were about 4 of us who all got pregnant very close to each other in the three or four months after Kalydeco hit the market, and with one exception, none of us even found each other until after our babies were born. At the time that I got pregnant with Kate we though I might be the only person in the world who had ever gotten pregnant on Kalydeco. (A few weeks later we learned that there was another woman a few months ahead of me, and after Kate was born I connected with a few more who had gotten pregnant very close to the time that I did.) Kalydeco itself was a totally new quantity in the world of medicine as a whole; nothing like it had ever existed before and nobody had any idea how it might affect a fetus.

So I most certainly do understand how terrifying it is to think about yourself and your baby being medical pioneers in this way. And, as I said before, I really can't speak to what anyone should or shouldn't do, because every situation is shaded in its own unique and specific ways. Still, I hope that this information can help a few ladies out there to have safe, confident pregnancies. CF mamas are some of the bravest, toughest warriors I've ever met!