The Badges We Have Earned

The update you've all been waiting for...

Welcome, friends! It’s been a hot minute and I’m sure you’re dying to know (ha, there’s an expression one should edit out of cancer updates) how things are going chez moi.

I’m too sick to go to church today (more on that later) so lucky you, I have already burned through half a novel and now wasted 25 minutes of my wild and precious life designing Compassion Brigade Badges, so LOOK WHAT YOU GET TO ENJOY!

Badges I Have Earned Lately

As an update on the past few weeks, here are the badges I (would have) earned, if only I were skilled in handicraft.¹ Now that I’m 1/4 done with this 12-week round of chemo, I can report that the last 3 weeks have been MUCH more bearable on my body than the previous infusions. PRAISE THE GOOD LORD. I get nauseous for a few days, but I don’t “blah-blah” for a week straight (per my 6 year-old) and my gross days are like clockwork. Which means my good days are, too! So I can do things like: be a functional human, parent, eat food and not revisit it, attend the State Fair, and keep up with my decade-long trend of not being prepared for back-to-school.

A fun side effect of one of my current chemo drugs is that it can cause neuropathy.² A fun preventative measure is to sit with ice packs surrounding your hands and feet for the hour in which you receive this drug. If you think this sounds like torture, you are right! All the Netflix in the world can’t adequately distract you. But I do it dutifully because I do not want neuropathy. Makes you grateful for central heating, summer, and any time that you aren’t sitting in a deep freezer.

My stupid cheek saga continues. Long story short:³ I had surgery at Mayo Clinic in early August. Despite still having the stone in my saliva gland, they did not actually remove said stone because turns out it wasn’t in the cheek gland causing the problem. Aka world-class surgeons “do not know what’s causing the scarring or stenosis in the saliva duct,” even after my 2.5-hour surgery.⁴ Unfortunately, the surgery did not work and I still have scant saliva. Went back to Mayo last week, and oh look, I’ve got an infection. Round six of antibiotics should clear that up swimmingly. Also the duct had scarred over after surgery. So the doc poked it with progressively larger sizes of dilators and—it sort of did nothing! Heading back in 3 more weeks for more fun and maybe more surgery!

This badge I’m delighted about, though I did nothing to earn it. Since my white blood cell counts have remained strong, I did NOT have to self-administer the injections that have been waiting in my fridge. Which would have apparently stimulated my bone marrow and thus given me bone pain but also boosted my blood count. Whatever—I didn’t have to stab myself! Delightful. And I’ve stayed on track with my weekly chemo, which is wonderful. However this weekend I came down with a nasty cold which may put this badge in jeopardy and/or derail infusion #4 on Tuesday, so TBD.

For the first two chemo infusions this round, I had to get steroids because—I don’t know why. Because my oncologist said so. Because it’s the norm. Because whatever. But! I have tolerated the toxic drugs so well that I get to skip a bunch of accompanying drugs now, like the ‘roids. So I can avoid being awake until 2 am on infusion nights! And if I were a professional athlete, I wouldn’t fail drug tests.

Talk about burying the lede: I am most thrilled about this development. Over the past week I have started growing eyebrows again! And eyelashes! It’s as thrilling as when I watched my newborns grow theirs for the first time. Except I sleep more and no one spits up on me. I’m 99% positive that this slight hair regrowth is due to stopping the first round of treatment and I will lose it all again on current round two. But! It’s still so fun to watch how quickly it starts to grow back when it comes AND you don’t realize how helpful eyelashes and eyebrows are (e.g., keeping dust out of your eyes / framing your face) until you have none. Here’s to hair.

Badges You Have Earned

You award-winning humans! You have been feeding us, near and far, all summer long. Between the gift cards you sent right after my diagnosis and the meal train that our church set up, we have had food streaming into our kitchen for weeks and weeks—and it is heaven-sent. I do not like to cook at all, and there are many children in this house who like to eat a lot. This combination means that anyone who brings a meal to my door is instantly elevated to saint status in my eyes. Thank you x infinity.

This has been a delightful distraction. Starting with this poem on Instagram and continuing in full force, so many of you have been writing slash poetry⁵ with me this summer. I can’t tell you how many people tell me how this practice is unlocking something inside of them. My own writing practice is changing within This Present Suffering, which is both hard and beautiful. So I adore that many of you are along for the ride, to speak the truth about what you know. It’s a fun entry-level pass to the world of poetry: give it a try with us?

Every day I get messages from friends and strangers, near and around the world, letting me know they are praying for me. Each and every one is a gift. I don’t know how to tell you this: your prayers are keeping me upright. Grace is thick around us right now, and so much of how I am being carried is through your love and generosity.

If you’re the praying type, I’d love your prayers for: this nasty cold to clear up, this stupid cheek infection to heal, and of course, my cancer to disappear completely.⁶ Also for my kids to have a good back-to-school transition, especially the littlest who daily declares I Am Not Going To School, I Hate School, I’m Not Going.

I’ve got 3 more rounds of chemo before my six-week MRI (on 9/22). If that shows no cancer left, I could cut out early and head straight to surgery which would be loads of fun! In a painful sort of way! But I’ll keep you posted, as ever. Thanks for being here.

1. Alas, or maybe, thank God—I am only crafty in the ways of words.

2. Def.: damage to nerves caused by chemotherapy that can result in pain, tingling, numbness, and weakness in the extremities, i.e., fingers, hands, arms, feet, and legs. As a writer (cf. footnote 1), I am already prone to certain extremities so the prospect of not being able to use my hands or fingers to expound about them is NOT OKAY.

3. Anytime you hear this phrase, you know a long story is coming.

4. Last week I got to see photos from the surgery during a follow-up at Mayo. In case you were wondering, you don’t ever want to see photos of your face whilst under general anesthesia OR photos of the newly-sutured inside of your mouth ever.

5. I promise no blood or gore is involved. Just back-slashes //

6. Never hurts to ask, I figure.