Faith, fear, and just the right books

I bought a small holiday gift for my friend Shelton last December. As soon as I saw it at one of my favorite stores, Wander North Georgia, I knew it was meant for him. But thanks to our individual responsibilities as parents, spouses, and professionals—and the modern social challenge of misaligned calendars—I wasn’t able to give it to him until last week.

The gift was a book of bookmarks, beautifully designed, each page with a quote or a thought to not only mark the passage of pages, but also spark a little extra inspiration or curiosity along the way.

This morning, Shelton texted me (OK fine, Slacked me) with this note of thanks:

He’s right, you know.

I immediately thought of how Brené Brown’s The Gifts of Imperfection sat on my nightstand for three years before I was ready to read it. Not that I didn’t try several times during those three years. But I couldn’t get past the first chapter. It just wasn’t landing. When I started doing a lot of my inner-work after my dad died, I picked the book back up, not really expecting it to be any different this time, but it was. I felt her words instead of just reading them. I took my time. I savored the insights. I learned about myself through the pages.

Gifts opened the floodgates for me to read every other thing Brené's ever written…along with anything else in the general self-discovery/emotion/spirituality/mental health genres I can get my hands (or ears) on. Had I forced myself to read that first book too soon, it wouldn’t have resonated with me the same way that it ultimately did. I read it at the exact right time, when I needed it the most.

—

For the last few weeks, along with reading (or more accurately, studying) Lisa Olivera’s Already Enough in hardcover, I’ve also been listening to Kate Bowler’s No Cure For Being Human in audiobook form. It’s the deeply personal and spiritual account of her experience of being diagnosed with, and eventually going into remission from, typically incurable Stage 4 colon cancer. It’s raw, and hard, and full of existential questions, longing, fear, uncertainty, acceptance, hope, and awe. When Kate was diagnosed, she had a 2 year old son, and so much of what she wrestles with is the thought of not being there to see him grow up. There’s more, of course, but it’s those sweet, sorrowful, tender parts that I think will touch any parent the most.

A friend and colleague of mine died last year, at the age of 45, from a similar diagnosis. She wasn’t as fortunate to get into a clinical trial as Bowler was (and yes, I acknowledge that it wasn’t just luck—it was self-advocacy and connection and so many other intangibles). She also wasn’t as lucky to be in the 3% of patients who have the kind of “magic cancer” that responds to a specific, targeted immunotherapy. My colleague left behind two girls, roughly the same as my kids, and I think about her often. I wonder morbid things, like what she was thinking when she knew she didn’t have much time left. I wonder how girls will remember her. I mourn for everything she’ll miss.

I, baruch hashem (Hebrew for bless God), do not have cancer…at least not that I know of. My mom survived breast cancer when she was 42, though, so as I get ready to turn 40 myself, the thought that it’s a distinct possibility for my future is always in the back of my mind. My genetic tests have all come back clear, but I see that more as one-less-risk-factor rather than one-added-reassurance. In many ways, I’ve come to terms with the thought that I’ll go through a cancer diagnosis at some point, and have a loosely intellectual plan for if, and when, it happens. (Yes, I understand the stupidity of planning for something like this, but just let me have that little bit of bliss, OK?).

This morning, though, as I neared the end of Kate’s book, I wasn’t wrestling with the thought of my idea of my own diagnosis. I was wrestling with something else.

My 7 year old son has been having stomach issues for the last 3-4 months. We’ve taken him to the emergency room at the children’s hospital twice because he was in so much pain, but the only thing they were able to tell us is that he might be constipated. His bloodwork keeps coming back fine. He had a small nodule show up on his spleen in an ultrasound in January, and we just took him back yesterday for a follow-up scan. I’m not a sonographer, but to my untrained eyes that were fixed on the screen as Katie, our tech, probed the jellied wand around the left side of his stomach, I swear I saw her measuring a dark spot that looked significantly bigger than it did three months ago.

We’ve been limiting the kinds of food he’s been eating, diligently tracking what makes his stomach hurt more, and what he seems to be tolerating. We’ve tried Miralax and senna. Antacids and probiotics. We’re frequently checking in with him to gauge his current state of “uggggh” on a scale of 1-10. The pediatric gastroenterologist we were referred to by the hospital didn’t have any new patient appointments available for another month, so I was prepared to keep doing all this until May. We got incredibly lucky, though (there’s luck and connection coming up again). Yesterday, by some small miracle, we were able to get on the schedule with another GI for this morning, thanks to one of my son’s friend’s moms. There’s an upside to going to a private school that you can’t really afford, but where a large percentage of the other students’ parents are doctors. They should mention that on the recruitment brochures.

The appointment was set for 11 this morning. I got up around my normal time, started a new book, walked around the neighborhood with Rubes, and went to take a shower. That’s when I fell apart.

As I was standing there, under the water, all of the what-ifs started pouring down on me like a flood:

What if the nodule on his spleen has something to do with the Acute ITP he had when he was 3? (It’s a rare blood platelet disorder, but most kids who are diagnosed with it grow out of in 6-12 months, which thankfully he did.)

What if the ITP turned into cancer?

Oh God, what if instead of planning my 40th birthday in September we’re just figuring out how to make sure he sees his 8th?

I can go down to part-time work. I can take a leave of absence. We live in Atlanta, there are amazing doctors here. Or we can fly wherever we need to.

What if, the same way I read “The Gifts of Imperfection” at exactly the right time I was meant to read it a few years ago…what if I’m listening to “No Cure For Being Human” right now because I’m about to go through this with my son?

That’s when I lost it.

I let the fear hit me. I didn’t try to choke back the tears. I buried my face in my hands and cried. I cried, and I prayed. I pleaded with my dad, wherever he is, asking him to please, please, please watch down on his boychick, his only grandson, and make sure he’s ok. I prayed to God to ask him to do the same, to please make this nothing. And that if that wasn’t possible, to please give me the strength to do whatever it takes to get him through it.

I cried. I prayed. I cried.

I got out of the shower and asked my husband to come upstairs. Normally I would try to compose myself, take some deep breaths, and try to force the tomato-red blotchiness out of my face before letting anyone see me. But I needed to be held, and needed to be scared, and needed someone else to witness it. He came up, and I told him everything I was feeling, and about the dark blob on the ultrasound screen, and I fell apart again on his shoulder. We stood there for a few minutes, me heaving deep breaths into his chest. And then it was time to get ready. Because that’s what parents do.

—

When the doctor came in to see us, after his RN filled in all the gaps in our son’s medical history, one of the first things he did was run through all of the previous test results and scan reports from our various visits over the last few months. He read them out loud, noting each time he ran across something that looked “perfectly normal,” or was “nothing to be concerned about.” At the end of the list, he looked up at me and my husband and said, “So here’s a good thing. I know what you’re thinking. And nothing here looks to me like the Scary C. Before we even do anything else, I want you to know that.”

This was a man who had clearly done this before.

As we went through all of our son’s symptoms, and the doctor checked his belly, he carefully talked us through what else could be causing him so much pain—he reiterated what he shared a few minutes earlier.

“Nothing here indicates to me that we’re in ‘sick’ territory. Even the growth of the node on his spleen doesn’t seem overly concerning, since there are usually other indicators that would go along with something more serious, and all of his bloodwork and scans are normal. You should check in with the hematologist who saw him back with his ITP, since they deal more with spleen issues, but I’m fairly comfortable saying it’s not the Scary C. I’m not sure what it actually IS just yet, but knowing what it’s probably NOT is at least start.”

I felt about 1000 pounds of worry shed from my body like old, dead skin. We focused the rest of the visit on narrowing down other possible diagnoses—Crohns and Ulcerative Colitis didn’t seem likely, but ulcers, intestinal allergies, and a few other things were still on the maybe list. He sent us home with a few prescriptions to try to heal the irritation in my son’s stomach (likely caused by the constipation), a plastic poop bucket that looked like a cowboy hat to collect a stool sample for bacterial testing, and instructions to see how the medications work over the next couple of weeks. If things don’t improve, we’ll come back for an endoscopy to see what else might be going on.

As we left the appointment and headed to take my son to school, for what was probably the latest late-drop-off ever, I was thankful but emotionally drained. If I’ve learned anything about emotions and equanimity, though, its that those two don’t have to be mutually exclusive.

—

I’m home now, about to go into a meeting, jumping back into my work calendar like a typical Tuesday. And thank God again, for the most part, it is. But I can’t stop thinking about my son. About Kate Bowler’s story. And about the reason I’ve been reading this particular book, at this particular moment in my life. Maybe it wasn’t because I was about to go through a cancer journey with my son. Maybe it was because I needed to be able to approach the edge of that possibility, recognize the fear and the pain, allow them to be…and remember that this is what it means to be alive.