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, driving on 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 opportu