The Best Day of Our Cancer Year

on the brink of something awful, something sweet

It was a hard year.

My husband C was diagnosed with bone marrow cancer in February—close enough to January that the entirety of 2023 was nicknamed, in my mind, Our Cancer Year. Our support system was astonishing: the litany of family and friends who helped us was everything I could have asked for.

But still: cancer. High-risk bone marrow cancer, which meant high risk for dying. A month in the hospital so that he could have his bone marrow completely wiped out to accept a transplant (another blessing, the transplant), and then more time in the hospital when graft vs. host disease cropped up.

This week, I watched American Symphony, as many people on Substack did;

Suleika Jaouad

’s The Isolation Journals is one of the most popular and beloved on the platform. The documentary is about Suleika and her husband Jon Batiste’s own Year of Cancer during the same year Suleika had a New York Times-bestselling book about her cancer experience ten years prior, and Jon won the most Grammys of anyone, including Album of the Year—plus had the responsibility and privilege to write the movie's titular symphony to be performed at Carnegie Hall.

Suleika and I have been friends since 2016. She was immensely supportive this year, particularly when I learned that C had myelodysplastic syndrome (which is what Suleika had ten years ago before it turned into acute myeloid leukemia). I consulted her about what felt almost as often as I was consulting C's bone marrow transplant doctor. I looked forward to watching the documentary with enthusiasm and trepidation; I joked to C that I would probably cry so hard that my head hurt, which is how I describe my most intense crying jags.

There were so many people that I wanted to watch the documentary with: my mother, who loves documentaries; C, who has lived through a version of what happens in the movie (his spouse was not nominated for a million Grammys nor performing at Carnegie Hall, but I did have a novel on contract to finish*); my BFF, Miriam, who often texts me encouragingly about this very Substack.

a moment from American Symphony

Because I'm in Taiwan and the film came out worldwide on Netflix while I've been here, I saw it with my mum first. We watched it on the big TV in my parents' apartment in Taipei. I didn't cry, but I did find it immensely moving; I've never met Jon, but there was much to the story that I did know and some things that I didn't, and, as with documentaries about people you know (at least, this is my guess), there were things that I remember about that year that didn’t end up onscreen. What I took away from American Symphony was the incredible resilience of people, the way art lives after us (if we're lucky), and the power of creativity to get us through suffering. One of the biggest moments I took away from the documentary was Suleika painting giraffes because it kept her from crying on the day of her bone marrow transplant. I'm sure I'll take away different things from it when I watch it again.

When I look back at this year, I'm going to remember a lot of things—strange things and ordinary things; things that were happy and things that were crushingly sad; crying for five hours straight after C went to work, because I didn't want him to see me upset. Things that I don't know if I'll ever be able to write about for publication, but were central to how I experienced 2023.

This is one thing that I'll remember: C had his 42nd birthday after he was diagnosed, when all of his blood counts were plummeting and we knew that he'd soon be going into the hospital. He hadn't lost his hair yet, even though he had already been doing chemo, but he was startlingly thin already. It was perhaps not the safest route to take, but a decision was made: we would throw him a birthday party at Festa, his favorite place in San Francisco (& perhaps the world); it's a Japanese karaoke bar that was the first public place we went to when lockdown ended, and the location of many giddy nights over the last ten years. C's sister, her partner, and C’s best friend would fly out from New Orleans to be there. There would be cake, and singing, and an Epcot theme paying tribute to his love for Disneyworld. Because we are both funny and melodramatic, he and I vowed to duet on the Death Cab for Cutie Song, "I Will Follow You Into the Dark."

In the dimness of the bar, we laughed with friends and loved ones in masks. I leaned against him as much as I could, feeling his body against mine and trying to remember the sensation of it—his weight against mine, the specific memory of being together. He couldn’t stop smiling. We all couldn’t stop smiling. Our smiles were genuine, I believe; I’d feared that I’d have to privately cry in the one-room restroom, but we were giddy that afternoon amidst Epcot pennants and “Wagon Wheel,” amid the unknown except for what we knew in those moments, which was that we were together, and it would be enough.

The only other occasion that the party reminded me of was our wedding—both events had us feeling profoundly and abundantly loved by friends and family, who were there to celebrate the person I love most. I thought of the 1996 film, It's My Party, a movie that I'm not sure anyone else remembers but is about a man who throws a raucous party for himself when he learns that his AIDS has turned for the worse. He dies in the end by his own hand.

The two days when C received his bone marrow transplant were amazing. The day we learned that he was, in fact, in remission was amazing. But when I think back on Our Cancer Year, I think that the joy we experienced at Festa that night was special—when C and I took to the stage, not knowing what the next months would hold, and sang together:

Love of mine, someday you will die  
But I'll be close behind, I'll follow you into the dark
No blinding light or tunnels to gates of white  
Just our hands clasped so tight, waiting for the hint of a spark
 
If Heaven and Hell decide that they both are satisfied  
Illuminate the "no"s on their vacancy signs  
If there's no one beside you when your soul embarks  
Then I'll follow you into the dark.

Please consider registering for Be The Match, the national bone marrow donor registry. It takes only a mailed-in cheek swab, and you could save a life.

*Thank you to Riverhead for understanding about my postponed book.