I find it obnoxious when authors cite themselves. But I find it more obnoxious to toss and turn for fruitless hours, willing oneself to JUST GO BACK TO SLEEP ALREADY, STUPID. So I’m going to allow myself this one teensy self-citation because this essay is one that resonates with many readers, and who doesn’t love sleepless solidarity?
1
The birds in my yard started singing at 4:41 am today, and I know this because I had been awake for a long, long time. How do birds decide to start singing in the morning is a fascinating Google dive, especially when you are trying to ward off pre-dawn nausea.
2
Today I am musing about hours that do/don’t tell the truth not only because I am annoyed by medicinally-induced insomnia
3
, but because when I run into people lately, they often tell me, “I love reading your updates!” which is not the usual response to Cancer News™. Then I blush because I forget that people who know me in real life read my missives, and I thank them, and they generally say something along the lines of you’re so honest or I love your vulnerability, and this is where I have to stop and remember that I am Not A Normal Person, and cancer has always been why.
Allow me to explain.
4
My older brother died of cancer when I was 10. He was 21. Forever terrible math. An unexpected offshoot of this rotten turn of events was that I learned (very young, viscerally) that Bad Things Happen To Good People, so I spent the rest of my formative years wondering why everyone didn’t just tell the truth about this fact? As a result I have always relished honesty and cultivated open conversations (WHICH DOESN’T ALWAYS WORK OUT, trust me). But it has certainly made me a writer who doesn’t shy away from hard subjects.
5
But friends, (strangers, countrymen)—I don’t find this kind of writing to be vulnerable. The hardest stuff is what you don’t see. I always tell writers that if you want to share anything at all in the Wild West of the interwebs, you better make it the tip of the iceberg: the small part you feel comfortable sharing. The vast majority of what you think/write/process stays below the surface. You write it out in a journal or you cry to your closest friends or you tell your therapist or spiritual director.
So have I been honest here? Compassion Brigaders, I wouldn’t lie to you.
But have I been vulnerable? I’ll be honest: this doesn’t feel vulnerable.
What are we here on this spinning blue-green marble to do, if not to tell the truth about life and its beauty and brokenness, and to share it with each other?! I’m baffled by the opposite, I suppose. Hence me typing out thoughts to thousands of strangers who surprisingly want to read about my cAnCeR jOUrNeY. Even at now-5:36 a.m. when I wish I were sleeping, I’d still rather tell the truth.
To be vulnerable means to risk being wounded. But spoiler alert: life wounds all of us! Sorry to ruin your Tuesday! So sharing the truth of what it’s like to be here and be human—that has never felt risky to me. I see so many more people suffering in silence. If anything, writing-through-the-worst has only brought my life connection, community, and compassion. And belly laughs with strangers. Here endeth the sermon.
Infusion Delights
I now have one infusion under my belt, thanks to 8 hours in a comfy chair last Tuesday. Like any mother-of-many, I foolishly approached this solo hospital sojourn as “spa time” and figured I would spend the day catching up on the staggering heaps of work I haven’t done over the past six weeks OR watching everything on Netflix that my spouse doesn’t like.
6
Instead I napped, which was great. No side effects during the infusion: bonus points. Ten more gold coins added because my nurse was a Bennie.
7
I came home and half-slept, half-moaned about my unwelcome return to NauseaLand for four days straight. Turns out my body hates most of the anti-nausea meds my oncologist prescribed, so I’m just glaring at the contents of my fridge again whilst returning to all my old tricks of ways to avoid puking, honed over too many pregnancies to count. Thankfully I came out of the fog by Saturday and found more energy, so I am taking each decent day as a heaping blessing.
The past week was made possible not only by The Most High, but also by the support of these infinitely generous humans:
the dear friends from grad school who rallied to pray and cook for us this weekend, filling our freezer to the brim with soups and dinners
the dear friends from college who gifted us with a housecleaning (undoubtedly the cleanest this frat house has been since…before we had our last baby? yikes)
these talented photographers (hire them stat, Twin Cities folk!) who offered us a photo session with our adorable offspring
8
We are honestly blown away by all the ways you are praying for us, feeding us, supporting us, and showering us with love these days.
Pit Prayer Warriors
Mark your calendars: June 2 is when I will get my next MRI to see how the targeted drug/immunotherapy mocktail is working. The goal is that this first infusion alone will have shrunk (killed! obliterated! decimated!) my tumor by 35%. I am still not over this wild goal. Science is a wonder. So please, please rally those prayers that this scan will bring the hoped-for results. My deep, abiding hope is that I can go straight to surgery this fall and skip chemo.
More prayers I’d love to plead on your behalf: I will likely lose my hair in the next week or two and I’m feeling v sad about this prospect. (No, cold capping won’t work for my drugs; thank you for your suggestions.) I’d also love prayers for Mothering Spirit because I have been unable to work for the past six weeks and I need to discern how to keep our collective work there moving forward. (Go read this essay and this essay and this prayer to see why I love this praying through parenting so much.)
Most importantly, would you join me in praying for these petitions—and add your own below? For all those fighting cancer alone; for those with advanced/terminal diagnoses; for those without access to adequate medical care.
9
Thanks, friends. You’re the best.
You can subscribe for free ALL THE TIME. But if you want to pay, that’s fantastic, too. Right now I say yes to anyone’s help.
1
90% of my new-mom friendships were founded upon shared suffering.
3
Actual medical update: one of the side effects of my infusion is a wildly itchy and obnoxious rash that has my oncologist prescribing all sorts of allergy meds to treat, and half of them are “non-drowsy!” which is great when you want to be a functioning professional but I just want to be a well-rested patient. Really killing my nap vibes.
4
If this Substack were an old-timey movie, here would be where we’d cue the cool hazy “back in time” rippling blur to signal BACK STORY AHEAD,
5
When aspiring writers ask me how to get started, I always wince internally and think, “welll, grief, infertility, miscarriage, and infant loss drove me to the page!” Then I tell them it was because I found new motherhood to be so hard and I needed an outlet. Which is also true, but I hate to admit that it was the worst crap of my life that made my writing any good.
6
Why doesn’t he appreciate that “Love Is Blind” is an irresistible train wreck of a social experiment?
7
Not the leader of Elton John’s mythical band, but a graduate of the College of Saint Benedict for which I have a deep affinity because I got my MDiv from Saint John’s. Shameless plug.
8
I would share the gorgeous photos of said offspring, but one of my social media boundaries is not showing photos of my kids, SO you’ll just have to wait for the Christmas cards which might honestly come out in July because why not? 2023 is The World Turned Upside Down!
9
Serious final footnote: I recently learned about this medical assistance fund for breast and cervical cancer treatment in Minnesota, which led me to learn about the National Breast and Cervical Cancer Early Detection Program that provides free or low-cost breast and cervical cancer screenings and diagnostic services to women who have low incomes and are uninsured or underinsured. PLEASE GET SCREENED & share with those you love!