Back Again

& an update

Beloved friends,

I wish I could tell you I went radio silent because I spent the last month training to be a DJ or competitively surfing in Tulum. Alas, that wasn’t the case.

When I returned from my travels in late July, I was excited to dive back into regular life and resume this newsletter. A routine bone marrow biopsy was the first to-do I needed to cross off my list when I got home. For maybe the first time ever, I wasn’t worried. My blood counts were normal, and I felt stronger than I had in years. A few days later, I received the results, which showed a very small amount of leukemia in my marrow. This means I’ve had to resume chemotherapy. I have the most amazing medical team and loving humans in my cavalry, and I feel so supported.

When I sent you a note a couple of weeks ago, I said I couldn’t resume the newsletter for reasons I wasn’t yet ready to write about. In some ways, I’m still not ready to write about this. Given how stubborn my disease has shown itself to be, I’ve spent the last two years receiving regular donor lymphocyte infusions, but I knew a return to chemotherapy might be in the cards. Still, I was caught off guard by the news, and I’ve needed time to process and adjust my life around this new treatment reality. In a case like mine, there are no statistics to help me find my footing; my oncologist tells me (more often than I’d like) that we’re flying by the seat of our pants. Once again, I find myself adrift in that ocean of uncertainty.

In the last month, I’ve been taking things day-by-day—really, hour-by-hour, given how the side effects of chemo come and go. Living that way sometimes takes on a white-knuckling-it feeling, like you’re doing everything you can to muscle through. For respite from that grind and from the ongoingness of illness, I’ve turned to something that, exactly two years ago, we began practicing as a community: noticing and cultivating small joys.

When I first wrote about small joys, I was recovering from my second bone marrow transplant. At the time, this is what I said:

For the last few months, small joys have been my sustenance… Often these small moments fade from view with the passage of time. What makes it into our memory banks are the bigger things—either the zeniths or the nadirs—but what we end up longing for and leaning on in hard times are the little quotidian comforts and delights; they lift and carry us from day to day. Noting these joys is a muscle I’ve been consciously trying to exercise: training the eye to see them and training the mind to hold onto them.

I do want to make a distinction here between the practice of celebrating small joys and the culture of “toxic positivity,” where we’re told to be ever-grateful, to always search for the silver linings, to put a positive spin on all experiences, even the profoundly tragic. The author Barbara Ehrenreich has written critically about this cultural phenomenon with far more nuance than I can in this missive, but it’s a topic I’ve thought a lot about, especially in these last months. It’s easy to feel pressure to be someone who “suffers well”—grateful and graceful and stoic 24/7. But that doesn’t allow us to exist fully, to experience the full range of the human condition, from happiness to grief, from gratitude to envy. 

I love observing tiny daily joys because it feels natural and easy, not forced, not pressurized, not all or nothing. And not only has the practice helped ease this difficult passage, it’s helped me identify what lifts me up, and then I can cultivate more of it.

With that in mind, I’d like to share some of the small joys that have buoyed me over the last month and that I hope can be a buoy to you, too.

I’ll start with this one: On my first day of chemo, every time the nurse turned her back, Jon would start shimmying his hips, finger twirling, full-on gyrating—until she whipped around unexpectedly and caught him mid-boogie, and we all burst out laughing.

One afternoon, I noticed our toothless, hairless senior dog, Lentil, investigating a strange pink blob on the lawn. It was a newborn squirrel, and I immediately jumped to the rescue, roping my brother Adam in with me. Per instructions we found online, we played a YouTube video of squirrel distress calls to get its mom to return. When by nightfall she hadn’t, we brought him inside and put him in a shoebox lined with a soft towel on top of a heating pad set to low. To our great joy, “Esquire,” as we named him, made it through the night, and we safely delivered him to a local animal sanctuary, where he will stay until he’s strong enough to be returned to the wild.

My friend Jonny has ensured my fridge is always stocked with meals named to make me laugh, like “Very Ugly But Tasty Moo Shu Rolls.” He’s been studying anti-cancer cookbooks, and whenever he makes a drop-off, it comes with a decorative menu from “Doctor Jonny ℞.” No canine lentils were harmed while making the salad.

My entire life, I’ve dreamed of someday having a floor-to-ceiling bookshelf complete with a rolling library ladder. I finally built that bookshelf and scored the perfect ladder on Facebook Marketplace, which I later learned once belonged to the actress who played Mary Ann on Gilligan’s Island. Liz came over to help put all the books on said bookshelf and we declared this room finally done—with absolutely no help from our lazy assistants.

Just last week, my three best friends from college came to visit. Among the many joys: Lizzie giving Nat a haircut on the lawn (in college, she used to give everyone haircuts in exchange for beer), Mara teaching us the nuanced meanings of “twee,” Nat introducing me to her deliciously dimpled baby and watching River transform into the Mary Poppins of labradors.

This last month has grounded me—in all senses, including geographically. I’ve had to be home for infusions and follow-up appointments, canceling many of the plans I was looking forward to. I’ve been confined to what’s within reach, and it turns out, there’s a lot of beauty and good within reach, if only we can bring ourselves to look for it.

So, in that spirit, your prompt for the week is this:

What are some joys—big or small—from the summer that you want to hold onto?

Sending love,

Suleika

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A Few Requests & Ways to Help—

In sharing this news with the community, I’d also like to include a few of the same requests that I sent two years ago when I wrote about my relapse.

Please no pity, no advice, no unsolicited medical information, no dietary recommendations, no alternative cures from your great-grandmother’s guru. I appreciate the good intentions behind these impulses, but please know that (unfortunately) I have a lot of experience when it comes to cancer, and I’m choosing the right path for me.

What I do invite is love. I’ve been the very fortunate recipient of so much loving care. Yet there are many out there who are not so fortunate—and some of them are people in your own life. Reach out to someone you know who might need a little love or thoughtfulness. Everyone is carrying their own private struggle, and you never know how far your kindness will go.

If you feel compelled to do more, you can sign up to be a bone marrow donor and encourage your friends to join you. It’s quick and easy and free and literally life-saving. And if you join the registry, please snap a photo and tag me on Instagram so I can repost it! You can also donate to NMDP (formerly Be the Match) or First Descents, both of which are near and dear to me.

And a final important note: If I do take up DJing, I will never withhold that information from you for a full month.