If you saw my last post, you know that last week, I had surgery to remove a cyst that was possibly malignant. I'll skip to the good news: it wasn't! I'm enormously relieved and thankful. My list of "songs to play at my funeral" can go back in the file cabinet for another day.
As I was waking up in the recovery room, fighting to keep my eyes open so I could prove to the nurse that I was ready to be wheeled out to my family, I kept circling back to one thought: Now I can finish my book. Now I can finish my book. I'm not supposed to lift anything heavier than a half-gallon of milk for six weeks: while I'm lying around watching my husband and children put away the laundry, I've got a task of my own to accomplish.
But you can't write all day. I have a nice big stack of other people's books next to my bed, and I'm greatly enjoying having the time to read them. I thought I'd write up a few recommendations in case you ever get any time to read, yourself. Christmas list ideas, maybe?
Everything Happens for a Reason and Other Lies I've Loved by Kate Bowler
This is the story of Kate Bowler's first year living with Stage IV colon cancer. I started it while I was in the basement of the oncology center waiting for a CT scan, not sure if I had cancer myself. I finished it after my surgery, when I knew I didn't. It was an incredible book in both frames of mind. Read it for widsom about faith in uncertain times; read it to know what to say and do (or not to say and do!) in times of crisis; read it because Kate Bowler is a great writer. When I finished her book, I wanted to be her friend.
What is a Girl Worth? by Rachael Denhollander
When she was fifteen, USA Gymnastics team doctor Larry Nassar sexually abused her. When she grew up, Rachael Denhollander brought him to justice. A lawyer herself, Denhollander is the perfect spokeswoman for abuse victims: smart, savvy, eagle-eyed, and tenacious. This book opens up the ugly realities abuse survivors face in the "justice" system (did you know that out of every 230 rapes reported, only 5 result in conviction?!). It's got a sweet love story, too.
Liturgy of the Ordinary by Tish Harrison Warren
I love the premise of this book: Tish Harrison Warren walks readers through the mundane events of a single day, and connects each episode to an office of the church. Waking up reminds her of baptism; losing keys makes her reflect on confession. So simple, yet so profound. Such a great reminder that wherever we are, whatever we are doing, we are loved by God.
I'm going to be done with these books pretty quick, so if you have any recommendations for me, please let me know!
I sent this letter to my email list today. If you'd like to join that list, please do so here.
Two big things have been going on in my life lately. One: I’m trying to publish a book. Two: doctors are trying to figure out whether I have cancer. It’s kind of a lot.
On the one hand, I have publishers saying they love my writing, but they need to see a larger “platform.” Evidence that some magic number of fans out there in the world would actually buy a book from little old me. So, I’m dutifully, clumsily, trying to build a platform: I started a writer Instagram page. (My daughter says I took a “mom selfie.”) I’m posting more on Twitter. I’m floundering along on Facebook. I’m trying to get speaking engagements, I’m trying to publish articles, I’m trying to get in touch with anyone who knows anyone who might be able to do anything to help bump this little thing along. Trying, trying, trying, and meanwhile the rejections keep coming and it’s hard not to put my head under the covers and say sorry world, never mind, I didn’t really have anything to say after all.
But then there’s this other thing. The thing growing at a disturbing rate deep inside my body. It’s a “complex ovarian cyst,” in fact, and at first it seemed okay because there wasn’t increased vascularity and my cancer antigen level was low, whatever those things mean, but then on follow-up ultrasound it had grown fairly rapidly, so this week I got referred to a gynecological oncologist. (Say that five times fast.) If you’ve ever had to walk into a doctor’s office labelled “Cancer Center,” well, you know it feels.
The funny thing is how these two big things have been pushing on each other in my mind, the book and the brush with mortality. You can’t be referred to an oncologist without thinking just a little (okay, a lot) about the possibility of your own demise. Wondering what your husband is going to make for your kids for dinner every night for the rest of their oh-so-short little childhood lives. Thinking about what you might want to do with however many days you have left.
And what I realize when I contemplate my own mortality is this: I don’t care about my platform. At all. I don’t care how many followers I have on Twitter. I don’t care how many people like my Instagram posts. I don’t care if I have a cute headshot. I want speaking engagements if God has something to say to someone through me, but not because I was to make that section of my book proposal look longer. If I’m going to die (and we’re all going to die), these things don’t even begin to scratch the surface of things worth worrying about.
But, when I think about dying, I realize that I do care, a lot, about getting this book into the world. If my days are numbered (and they are; everyone’s are), then right now I only want two things with the rest of my life: I want to love my family well, and I want to see this book fully birthed into the world. Because I really believe that God, the immortal invisible only wise God, has something to say to this beat-up, broken-down, weary old world of ours. Maybe it’s hubris, but I do believe that He’s entrusted one tiny whisper of His word for the world to me. And I feel a new urgency about breathing that whisper out.
The oncologist was encouraging. She doesn’t think it looks like cancer. But we won’t know for sure until it comes out, so surgery has been scheduled for November 12. And then, I’m going to take the full six weeks I’m allotted by law to recover from this surgery; I won’t go back to teaching until after winter break. And in those six-plus weeks, I plan to finish writing my book. To revamp my proposal. To get ready to try again.
I’d love to send you a letter someday that says “I have a book contract!” or “That stupid cyst was benign!” But meanwhile, I’m just waiting. Waiting to see what God is up to in all this. Thankful that He’s here, walking around in the fiery furnace with me. Trying to figure out what is mine to do, platform-wise or otherwise, in the meantime.
If you feel like talking to Jesus about all this, please remind him of these things:
I’m not in control of either of those things. I can’t make either of them happen for myself. But I’m trusting in the One who can.
“Your platform,” she says, “is your body of work.”
She means, I think, to liberate me from the metrics of platform-as-followers: the notion that if I could somehow lash together enough social media fans, like so many planks of decking, I could step up on their backs and stride away to stardom. But the idea of platform-as-body-of-work strikes no less fear into my heart. What is my body of work, anyway, I wonder. A few dozen blog posts read by a few family members and a few close personal friends? A handful of articles published on websites, some of which have now shuttered? Another handful of essays slaved over in my MFA program, and submitted, and submitted, and submitted, and finally let slide into some dusty corner of my hard drive? No wonder the publishers rejected my book proposal. “We love the writing,” they say, “but she has no platform.” No platform. Not enough followers; not a big enough body of work.
But my body of work is five thousand dinners cooked on five thousand nights. Potatoes peeled, pork seasoned, zucchinis sliced. My body of work is soccer practices and piano lessons and band concerts and cross country meets. My body of work is measured out in Band-Aids and shoelaces and snack-size Ziploc bags. My body of work is driving my brother to the nephrologist and teaching second graders to find similes and creating the song lyric slideshow for Sunday morning church and listening to a friend while I fold socks.
My body of work is four bodies: bodies I held inside my body for as long as I possibly could, laying my body on the couch each day, ignoring both its protests and the studies that say bedrest produces no measurable benefits, only getting up for the toilet or the shower, until the February December April July day when my body gave way and their bodies hurtled, some too soon, into the world. My body of work is four bodies that I nourished with my body, attaching my body to a green hospital-grade breast pump in the middle of the night, ferrying the bottles to the NICU in the morning, reaching my fingers through the portal in the side of the plastic isolette to stroke their little calves to say hello. My body of work is four bodies I no longer bathe, wipe, buckle, clothe, swaddle, or carry. Four bodies I still snuggle, feed, spit-polish, and prod.
“Another way to think of it,” she says, “is that your platform is your credentials.”
Ah, yes. Credentials. My bona fides, the chops that qualify me to write this particular book. My credentials, I think, are the hours I have spent on my therapist’s couch. The hours in the psych ward, the hours in the self-help aisles of the bookstore, the hours with my face pressed into the living room rug. What other credentials for writing a book about the time your life fell apart and got pieced back together again can there be?
Of course, the world does not owe me a book deal. So I spent more time growing a family than a platform. So a sales and marketing team decided not to take a risk on the size of my intended audience. Who am I to argue?
My oldest son’s home room teacher emailed tonight to say that my son is a pleasure to have in class. He is “a silent leader,” she says. “The students really look up to him and many have mentioned they feel they can be more successful seated by him. I'm so glad I get to have him as a student.”
I have written a book, and I hope someday it gets published, platform or no. But tonight, my body of work is a boy who sets an example for his classmates.
For tonight, that’s enough.
Well, hello. It’s been so long since I wrote a blog post, I had to make a new blog. But I’m just sitting here feeling kinda crappy, so what else do I have to do? (Spoiler alert: if reading about the minute details of other people’s illnesses isn’t your jam, you might want to go find something else to do with the next six minutes of your life. No hard feelings. Long story short: Lyme Disease sucks.)
So, a week and a half ago, I was tromping through the woods in upstate New Hampshire. “But Sarah,” those of you who know me will say, “you live in Oregon.” Yes, I do. I was in New Hampshire on a research trip for the book I’ve been writing for about ten million years. And yes, tromping through the woods was part of the research.
I was there with my mom, which might have been part of the reason we maybe weren’t as good about the tick checks as we should have been. What forty-year-old wants to get butt-naked in front of their mom? Or vice versa. So she looked at my back, and I looked at hers, and we just kind of did the rest of our bodies ourselves. Turns out, there are other parts of our own bodies we really can’t see with the eyes on our heads.
Cut to last Thursday. I’d been home from New Hampshire for a few days, and I was sitting at my son’s baseball game when all of a sudden I didn’t feel so good. I felt bad about not walking over to say hi to my son’s friend’s mom before I left, but I just couldn’t. I had to get home Right. Then. My husband found me crumpled on the couch about half an hour later.
The first couple days were okay. I had fevers that rolled up and down like a roller coaster--you’re shaking with chills, it’s getting higher, you feel like you might incinerate, you’re at the top, you start to soak your clothes with sweat, you’re coming down!--but the fevers only got up to the 101 range, and I felt well enough to sit in bed and write. Well, my head hurt. And my body ached. And I had the teensiest bit of a cough. But really, I was okay.
Sunday morning, everything changed. My husband is a pastor, so he left the house at zero dark thirty as he always does on Sunday mornings, and the idea was that I would drag myself down the stairs and out to the car so I could drop my four kids off at church. But when I woke up that morning--actually at about 4 am with violent chills that shook me for an hour, and I never did get back to sleep because I felt that bad--I knew I wasn’t going anywhere. My temps were in the high 102s. It didn’t seem safe for me to walk down the stairs, much less operate a vehicle. I did not open my computer that day. I laid in bed and tried not to die.
By Sunday afternoon, I remembered something. My insurance company has been advertising this Teladoc service, where you pay ten bucks to talk to a doctor. I don’t really know what I expected a doctor to do over the phone, but I decided it was worth a try.
After I registered with the website, I figured I should take my temperature before the doctor called. As I peered down at the rapidly escalating number on the thermometer with my right eyeball, I started to panic. Oh no. Oh no, oh no, oh no. It finally stopped at 103.7. He’s going to tell me to go somewhere.
And that’s exactly what happened. The doctor had a perfectly lovely phone voice and asked all sorts of great questions, but in the end, he told me I need to go to Urgent Care or the Emergency Room. “Do you have someone to drive you?” he asked.
My husband was out in the backyard on a work call. I texted him twelve times in a row and called twice before he finally got off the phone and ran upstairs. “We have to go to the Emergency Room,” I told him.
“Not Urgent Care?”
“Let’s go to the ER.” As far as I was concerned, I was dying, and I had already spent ten dollars on a middle man who shuffled me down the line. Why spend another forty-five at Urgent Care when they were probably just going to put me in an ambulance?
At the ER, my temperature had, of course, gone down. Don’t you hate that? It was only 100-something at Triage. But it was a lovely Sunday afternoon in June, which, in my limited experience, is an excellent time to get through to the ER. I only had to curl myself into a fetal position on the widest chair in the lobby for maybe twenty minutes before they came out to get me.
By the time I got back to the room, though, my face was on fire. “Do you usually look like that?” the nurse said when she walked in. “I’m going to take your temperature again.” 102.9.
Then the doctor came in. Honestly, I don’t know where they get some of these people. This guy was perfectly nice and all, but nice isn’t really the sum total of what you want in an ER doc, is it? You also want 1) someone with normal speech patterns and 2) SOMEONE WHO FIGURES OUT WHAT IS WRONG WITH YOU.
First, the speech pattern thing. This guy began every sentence, I kid you not, with the words, “Yeah, I was gonna say.” As in:
“Yeah, I was gonna say, hi, my name is --. What seems to be the problem today?”
“Well, I’ve had a fever since Thursday, and today it was 103.7 at home, so--”
“Yeah, I was gonna say, so you’ve been having fevers?”
“Yes, and also, I have a really bad headache--”
“Yeah, I was gonna say, do you have any other symptoms? Headaches?”
“Yes, really bad headaches. And my back hurts, and--”
“Yeah, I was gonna say, does your back hurt?”
It was the weirdest. You were going to say… when? When I was already answering your last question? Or you just have a strange need to pretend like you were about to guess what was going to come out of my mouth?
Honestly, how does someone get through medical school like this? I assume in all those four years there’s at least ONE DAY where you practice talking to a patient and somebody observes you and tells you how you did. I can only assume that somebody was being too nice to this guy. Well, his “Yeah I was gonna say” thing is weird, but I hate to bring it up… People! Stop being so nice to each other!
I mean, I will feel bad if the guy has an actual speech disability. But I’m not feeling so well right now. Mea culpa.
By this point, my in-laws, who live in upstate New York, were texting my husband, “LYME DISEASE. TALK TO THE DOCTOR ABOUT LYME DISEASE.” Well, okay, they probably didn’t say it quite like that. But that was the general drift. So we did. And here’s what Dr. IWasGonnaSay had to say to that:
“Yeah, I was gonna say, for Lyme Disease, do you have a rash?”
Bear in mind that by that point, my fever was back up to probably over 103. And I had been sick for four days. I had not been performing luxurious self-care routines in front of the mirror. And my husband, who was terrified of getting sick himself, had been keeping a wide berth. So honestly, how were we supposed to know if I had a rash? But I hadn’t seen one. So I said no.
“Yeah, I was gonna say, if you don’t have a rash, then it’s not Lyme Disease.”
And here’s what I would like to say, in the radiant glow of hindsight, to that ER Doctor: First of all, it’s not true, what you said. People can have Lyme Disease without a rash. But second, if a patient comes to you with a high fever, instead of asking her if she has a rash, look for one yourself. You are a doctor. It’s called an exam. I promise I won’t feel weird about it. It is, after all, why I am there.
Instead, they sent me off for a chest x-ray to look for pneumonia (negative), and did a nose swab to check for flu (nada). They gave me some IV fluids. Then, they sent me home.
“It’s just a virus,” said the nurse. “You’ll feel better by day eight.”
Are there really viruses that make you feel this bad for this long? I wondered. “But my head hurts so bad…” I was honestly surprised that they hadn’t ordered an MRI to watch my head explode in real time, at least for science.
“We can’t do anything about the symptoms,” she said. “Go home and get some rest.”
Luckily, luckily, the next morning I caught a break between fevers and decided to take a shower. Luckily, I was toweling off in front of the mirror. Luckily, I spotted a big reddish patch on the back of my right knee.
“What is that?” I asked my husband.
I had already called and made an appointment at my primary care doctor’s office. Now I knew what I was going to say.
“I think I have Lyme Disease,” I said when the doctor walked into the room.
I could tell she didn’t believe me. “Let’s start with the symptoms,” she said.
But as I unspooled my story, and especially when I showed her the rash, she caught on. She was brisk, but she followed the CDC protocol, which I had already looked up before I came in. “Ninety-nine percent of people who walk in and say they have Lyme Disease are wrong,” she said on her way out, “but I think you really might.”
I do like to be right. I gave her a weak thumbs up.
The next problem was the antibiotic. I’m allergic to penicillin, so the doctor had prescribed doxycycline, which causes nausea. Sure enough, less than half an hour after I took it, that baby came right back up.
The ibuprofen I’d taken that morning had come up, too, along with the single nibble of an edge of a Nutri-Grain bar I’d swallowed along with it. In fact, I hadn’t kept anything down since Saturday.
I called the doctor’s office--this was at 12:30 pm--and they promised to call right back. I spent an hour lying on my bed in a feverish haze, head throbbing, imagining how nice it would be when they admitted me to the hospital to administer the antibiotic via IV drip. Someone will finally take care of me…
But it wasn’t to be. I called the office again an hour later and found out from the “Patient Coordinator” that the doctor had written a script for an anti-nausea med, but the nurse hadn’t called it in to the pharmacy yet. “She’ll call you right back.”
An hour later, I called again, this time in tears. I wasn’t sure which would happen first: my head exploding or incinerating, but either way, death was imminent. “Could you just please tell them I feel terrible?”
“She’ll call you right back.”
They finally called the medication in at 4:30, and the pharmacy had it ready at 5:30. All afternoon I had been lying in bed thinking, I’m sure labor was worse, but this is a close, close second.
“Take this medication with a small meal in case of upset stomach,” reads the Doxycycline bottle, so in addition to two anti-nausea tablets, I also ate the largest meal I could bring myself to swallow: three Saltine crackers. Even so, I spent the next two hours in agony. My head was throbbing, my whole body was feverish, and I couldn’t lie down because if I did I was sure I’d throw up. All I could think about was my tiny, shriveled stomach with nothing but two globs of cracker and that one enormous pill burning a hole in its lining. I don’t want to compare myself to cancer patients, because cancer is obviously way worse, but let’s just say I have a whole new empathy for people on chemo.
But. The medication worked. That was last night, and this morning, my headache is much diminished (though not altogether gone), my fever is lower (though again, still present), and I actually ate half a bagel.
Now I’m going to take another of those doxycycline pills. Wish me luck.