Days of Awe: The clinical trial drug that might save my husband's life

"G’mar Chatimah Tovah” – May you be inscribed into the Book of Life

The Book of Life

I don’t give much credence to Kübler-Ross’s five stages of grief, but there’s nothing like driving my dying husband to UC-San Diego Medical Center during the Jewish High Holidays for a Hail-Mary* clinical trial to drop even an agnostic Jew straight into “bargaining.”   

“Please,” I say, quietly, pulling onto the I-8 to California, with Jake asleep beside me in the passenger seat. I don’t usually pray, but my attempt seems passable: polite yet desperate, concise yet pleading, and encapsulating more emotions than I’ve ever felt simultaneously.

“Please, let the trial work,” I murmur. And, because I’m trying to make a deal, I add, “I’ll do anything.” I know I sound like a teen boy trying to convince his date. I’m not exactly sure what I’m supposed to offer in exchange for not just the life of the person I love, but the life I imagined for myself, too. For the life we thought we’d live together.

My husband, Jake, has at least eight rapidly expanding tumors in his neck and lungs, and the only treatment left, short of divine intervention, that might extend his life is a clinical trial drug called “petosemtamab” (or MCLA-158), which targets patients with recurrent metastatic squamous cell carcinoma of the head and neck (R/M HNSCC). Getting him into this trial has consumed me from July 21, when we learned of his recurrence (a surprise on a CT scan that was just meant to evaluate post-operative bone healing), all the way to this morning when I finally pulled the car onto the road. I’ve made hundreds of phone calls and e-mails, pleaded with physicians, pharmaceutical companies and clinical investigators. I’ve begged for appointments to establish care, open trial slots, opportunities to be screened for eligibility—really—for Jake’s life.  

Since Jake’s initial cancer diagnosis in October 2022, he’s already made so many medical bargains: first, he exchanged a centimeter of his tongue to remove the endophytic tumor that had grown inward in a triangular shape from the surface of his tongue, like a terminal iceberg. Then, he traded six weeks of mucosal-frying radiation to lower his risk of recurrence.

Whatever he was offering didn’t take. In May 2023, when the tumor aggressively returned, Jake started to “negotiate” worse deals. On May 25, during surgery that was supposed to remove half of Jake’s tongue (and the cancer in it), his surgeon, Dr. Hinni, had no choice but to remove Jake’s entire tongue because the cancer had grown exponentially in the time between its discovery and the “salvage surgery.”  Jake will never eat or speak normally. He can’t swallow without choking, constantly fights abnormal mucus production (to the point of suicidal ideation), and, when I kiss him, and hold his face in my hands, he can’t feel either properly, because vital nerves were severed. All for more time. He often kisses me again anyway and says: all for more time with me.

Petosemtamab is, realistically, Jake’s last chance: The median five-year-survival rate on current standard-of-care for R / M HNSCC is, maybe, 4%. Given the particularly aggressive nature of Jake’s tumors, 4% is optimistic. There’s a more hopeful set of projections for patients who respond positively to the immunotherapy drug Keytruda, but Jake isn’t a responder; only about 20 – 30% of R / M HNSCC patients respond to Keytruda. Jake’s cancer, however, reacts to Keytruda like it’s water. Chemo is the other conceivable treatment route, but chemo is only palliative for R / M HNSCC, which means that the two rounds Jake got were really suffering in exchange for a little more time to say goodbye. But, maybe, chemo was also suffering in exchange for the time we spent engaging in the horrible, complicated, and confusing process of getting into the petosemtamab trial, which might change the trajectory of Jake’s story. A story that I badly want to believe hasn’t yet been fully written.

Though I’m not religious, my family is Jewish—big emphasis on “ish”— and I can’t help but notice a peculiar coincidence: Jake’s acceptance into the clinical trial, and the timing of his first dose of the experimental drug, coincides with Rosh Hashana and Yom Kippur, the Jewish High Holidays. During Rosh Hashana, God supposedly writes your name in the Book of Life or of Death, or remains undecided (don’t worry: there will be an opportunity to haggle). Then, on Yom Kippur, the book is sealed. It seems fitting, too, since Jake and I spend our days writing together, that the High Holy days are an entreaty to the ultimate author: the first draft written on Rosh Hashanah, the opportunity to ask God to make some edits during the Days of Awe and Repentance, and then finally, God hits “publish” on Yom Kippur (without the option to edit further, which seems too high-stakes and like the divine might want to use a different platform—maybe Substack?). Though we want to go on living each year, this is the first time the High Holy days have felt so immediate and relevant, even if we fundamentally believe that we’re the creators of our own story.

The day after Rosh Hashanah, we found out that Jake’s name was officially placed on the list of patients accepted into the petosemtamab / MCLA-158 clinical trial. It felt as close as we were likely to get to having his name actually written in the Book of Life.

Days of Awe

Although Jake’s name has been transcribed onto the MCLA-158 clinical trial patient roster, getting the study drug isn’t a guarantee of survival. About 35% of patients in the phase one portion of the trial saw a reduction in their tumor size, and another 30% saw stabilization in their tumors. About a third of patients didn’t respond at all: while there’s upwards of a 65% chance Jake will benefit, the median length of duration of that benefit is only six months. But six months of a future is six more months than we have now. And if we want to really start arguing for being worthy of the extra time, we apparently have ten days between Rosh Hashanah and Yom Kippur to make a case:

“According to the Talmud, God opens three books of destiny on Rosh Hashanah. If our deeds are good, he writes our names in the Book of Life. If our deeds are wicked, he writes our names in the Book of Death – but if our deeds fall somewhere in between, they are written in a third book. God suspends judgment on those whose names he writes in this book. If our names are written in it, we have ten days [the Days of Awe and Repentance] more to change our hearts and lives.

Ten days to change the trajectory of a life.  How much personal improvement would it take for Jake to be around to see our 15^th anniversary this November, his 40^th birthday in December, or even next Rosh Hashanah?

The Days of Awe sound like both a curse and a blessing—like saying, “I hope you get what you deserve.” Although I know this is grossly oversimplifying things, I’m deeply bothered by the idea. Reading the news gives you an intellectual sense that fairness isn’t real, but watching your 39-year-old, previously healthy husband lose both figurative and literal pieces of himself in front of you at the same time you’re trying to start a family really brings the “fairness isn’t real” point home.

 “Fairness” belongs to children, metered out by the adults in their life who are willing to cut cookies into perfectly equal pieces and ensure each child has the same amount of time on the swing. Fairness from the Universe? Please. Do I look like a child? I was young once, and then Jake got sick and then I wasn’t. It was as quick and simple as that.

Besides, how much more could we change our lives? Our lives have been altered hugely and irrevocably. We’ve uprooted everything: left friends and families and jobs, and placed all our hopes on this experimental chemical, because there is nothing else we can do, except, I suppose, change our hearts.

While these last few months have filled my heart with anxiety and dread, more than anything my heart has been an organ of wanting. In my journal, there’s entry after entry about feeling greed. That’s my sin of preference, I suppose: I’m greedy for Jake. People we love want to come and say goodbye, and I feel a flicker of resentment for any time outside our bubble of intimacy. I resent the days for going too quickly and the hours that Jake is struggling for being too long. I follow him from room to room to reduce the time we’re apart, I record the sound of his voice, I memorize the feel of his hands, and yet I’m still greedy for him. There’s never enough: not enough time, not enough closeness, not enough writing together (our primary activity), not enough conversation, not enough anything. My heart beats to the request for more, more, more.

Should I be repenting for that greed? For that gluttony? Should I be sorry I can’t be more Buddhist about the situation and be willing to release my attachments? Many years ago, I went to a Yom Kippur service with a friend, and the entire congregation stood and began to beat their chests, pounding their fists over their hearts as they recited a litany of wrongs that they were all responsible for. A communal tabulation of violations against the divine. I could by bypass this old-fashioned “precordial thump” and try to reset my heart with a defibrillator— the way I do at work when I try to shock a patient out of an aberrant rhythm and back into a normal beat—but it would just go right back to the same refrain: More. More. More.

We’re only 39 and he’s being taken from me. I might have decades without him, time in which I’ll never get another new memory of his hands or his face or his smell or the way he smirks when he reads something that entertains him and I know he’s about to show me. We’re living in a constant state of grieving for things that have been lost, and things about to be lost. But we’re also writing together, walking together, and making each other laugh (it’s easy to make Jake laugh when I make quacking sounds, like I’m a happy duck). I want more.

And I’m not sorry for it.

Considering all Jake has suffered in the last year, I don’t really feel like we’re the ones who need to be apologizing. 

Though we could ask forgiveness from each other instead, we’ve already agreed there’s nothing left to forgive. We have a lot we’ve been sorry for, like any two people who have been together for a long time, but we’ve long since made our apologies and put our regrets down. We have enough to carry without the weight of regret, and, anyway, the only thing that’s important in the end is how best we can carry one another. Really, this is the only absolution that matters to me, now.

As we pull into the UC San Diego La Jolla Family House—the hospital-owned apartments where we’ll be making our temporary home for the next month while Jake starts treatment—Jake adjusts his seatbelt and grimaces. His head is lolling to the right (his neck’s usual direction to loll) and I try to focus on parallel parking, not on the fact that I know Jake has a head-lolling preference, which is chin towards chemo port. I know a lot now, that I could have spent my entire life remaining ignorant of:  That a man’s cancerous tongue can be cut out and replaced with a flap of inert muscle and skin from his thigh (the flap continues to grow hair), that a too-high dose of Olanzapine for post-chemo nausea is so sedating that it mimics the respiratory suppression heralding the final descent into death, that excessive mucus, not pain, can make someone reconsider living. Jake goes apneic for a moment, and then rolls his head back to center, taking a deep, rattling breath. He sighs and settles back into sleep.

“Please,” I say, again, unsure what else to say.

I never went to Hebrew school: how does this prayer thing work? Do I need to be more specific? I feel stupid for making this entreaty—to what? to who? But I feel the urge to make it, anyway. Like all things lately, it’s now or never.

On Yom Kippur, your fate is sealed

On the day of the first Petosemtamab infusion, the medicine is brought to the infusion by the study coordinator.  It looks like a 250mL bag of water. There’s no flash of divine light. It’s pretty anticlimactic.

Jake is taken to the room where he’ll receive the infusion. On Yom Kippur, religious men will drape themselves in kittel, which can mean “burial shroud.” Instead, Jake’s draped in a hospital gown, which is reminder enough. We really don’t need more relics of mortality. Death is everywhere around us, the scaffolding on which we’ve built our lives these last few months. It was before, too (for everyone), but we don’t notice it most of the time—or we’d be paralyzed both by existential dread as well as the big, incredible emotions we’ve been feeling lately. These emotions, like wonder and deep gratitude are awesome, but also generally halt the getting-done of dishes or laundry. 

To mark the close of Yom Kippur, a shofar (ram’s horn) Is blown. I don’t have a shofar to blow, loudly, to see if I can get God to attend to us for one last moment. But the final hours of Yom Kippur are the last times for entreaties, and I want the author to find us compelling enough characters to write more chapters for.

“Please,” I whisper instead. The intensity of my wanting is louder than any sound a shofar could possibly make, “Please,” I say again. “Please.” It’s the only prayer I seem to know.  

The Days of Awe won’t end for me at their usual time, since every day we have together, I’m amazed that Jake’s still beside me. Being able to talk to him, touch him, sleep next to him, kiss him. “Please” I repeat to the bag of medicine, to the doctor, to the coordinator, to the nurses, to Jake’s body, to the soft patch of skin beside his ear where I whisper. “Please, please, please.” I repeat the entreaty, even though the official religious time for bargaining has almost passed. Will petosemtamab be enough? Will my prayers? Should we have changed our hearts and lives? We didn’t even bother to fast, we didn’t light a candle, we didn’t set foot inside a holy building—although all spaces we’re together, while Jake is still alive, feel like holy spaces now.

As I watch the last of the study drug infuse, I watch Jake’s fate being sealed.  He’ll respond or won’t. He’ll live, or he won’t. Every two weeks he’ll receive an infusion until the first set of follow up scans reveal the plot. Petosemtamab writes the story now. There are no bargains left to make. I’m like those SpaceX engineers watching the rocket go up, and hoping it doesn’t blow.

I take Jake’s hand as the final drops of the MCLA-158 enter his vein. I think about how I’ll get to tell our story later: Will the tumors shrink? Will we get more time? More life? Will Jake get what he deserves? I’m like a child at bedtime, not wanting to close my eyes, asking: Can we make the Jake story last just a little longer?

If you’ve gotten this far, consider the Go Fund Me that’s funding Jake’s ongoing care. You can also read Jake’s perspective (and I highly recommend that you do!) at JakeSeliger.com

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* I realize that it’s funny to cite a Catholic prayer in the midst of an essay about Judaism.