One year ago today, I went into surgery expecting that I’d lose half my tongue to a squamous cell carcinoma recurrence. The evening before, Bess and I got legally married;[1] it was a short, but charming, crash ceremony. I say “crash ceremony” because we wanted to marry before surgery, and on afternoon of May 24 I learned a spot had opened for the next day. It was only luck—if you could call any part of this story “lucky”—that Bess and I had picked up our marriage license a few days earlier, expecting to wed sometime before the planned surgery date of June 8 or 9.  

The tumor itself has only been confirmed on May 11: I got a “hot” PET scan on April 26. Mayo Phoenix initially scheduled follow-up CT scans a few weeks later to figure out what was going on, but Dr. Hinni, the ENT surgeon at Mayo who saved my life, did not like that delay (he dislikes any delay, a trait which has likely saved my life on several occasions) and ordered them stat, so on May 1 I went in to find out whether I was likely to live or die.

The CT scans were ambiguous. On May 8, I went in for a fine-needle biopsy done by interventional radiology. The fine-needle biopsy was also ambiguous. On May 9, I went in for a core biopsy, which found no cancer. I celebrated and told friends and family I was in the clear. I don’t remember if it was that day or the next that Tony Mendez, Dr. Hinni’s PA, called to say they weren’t convinced by the biopsy, and that, if I was up for it, Dr. Hinni would do a surgical biopsy on May 11. Dr. Hinni didn’t trust the biopsy results and didn’t like the ambiguity in the scans. His favorite radiologist—he said something like “she doesn’t miss”—couldn’t tell whether the images showed cancer or something else.

Yeah, I was up for it. The surgical biopsy removed all ambiguity: cancer. But the soonest a hemi-glossectomy could be scheduled was June 8 or 9. Throughout May, my conditioned worsened: headaches that were noticeable at the beginning of the month required oxycodone by the middle. The month-long gap between May 11 and June 8 seemed cavernous. Bess and I lurched into action to try and figure out what to do, because the only Mayo head and neck oncologist, a guy named Panayiotis Savvides, happened to be on vacation in Greece. We couldn’t get ahold of him, and Mayo, peculiarly, had no backup coverage. What happens to people who get sick while the head and neck oncologist is out of town? Eventually his PA tracked him down and got a prescription for an immunotherapy called pembrolizumab (Keytruda) to start on May 19.

But was that enough? We didn’t know and couldn’t ask about the rationale. Bess did some drive-by consultation from docs she knew online, some of whom recommended we look into chemo. We were lucky enough to meet with an oncologist named Dr. Mahmoud at Banner-MD Anderson on May 18 or 19. He had a sense of urgency appropriate to cancer: he said that he’d admit me through the emergency room to start chemo and Keytruda right away, to possibly slow the tumor. The surgeons at Banner didn’t think clean margins were possible given the extent of the tumor, without first shrinking it. But Dr. Hinni thought clean margins were attainable, and chemo would delay surgery by weeks, possibly months, because of its effects on wound healing. If chemo didn’t work, the window for a possible cure would be closed. Would Keytruda have any effects on surgery? Dr. Hinni said no. The question of chemo first versus chemo later became moot as my condition worsened rapidly.

I wound up getting a Keytruda infusion on Monday, May 22. In my calendar, there is a “post-operative visit” on that day as well, so I must’ve seen Tony and/or Dr. Hinni. I was doing terribly, and one or both of them must’ve seen my deteriorating condition and deduced the obvious. The next day was my brother and sister’s birthday, which has no immediate bearing on this story, except to say that cancer has a way of ruining all sorts of things for both the patient and the people who love them. On May 24, Tony called: would I be up for hemi-glossectomy (removing half the tongue) on May 25? Dr. Hinni was leaving for vacation either that night or the next day (I think the next day).

When Tony asked, I felt a bizarre lurch in consciousness. But I said yes. What other answer was there? It must have taken an epic feat of coordination to make the surgery happen, because it required not only a full day from Dr. Hinni and Tony and many others, but another ENT named Dr. Nagle, who would form a “flap” of muscle out of tissue from my leg, to replace the lost half of my tongue. Two surgeons would be working on me, one up top, as it were, and the second down below.

I texted Bess, who was at work, right away, then family, then friends. My brother and sister drove out from L.A. My mom flew. Bess accelerated a plan to get blood drawn before the surgery and sent to a company called Natera; they make tests that monitor circulating tumor DNA (ctDNA). A Natera test can find cancer cells in the blood before a tumor is visible to imaging. We planned to monitor ctDNA to guide decisions around, for example, post-operative chemotherapy, which we’d planned to initiate in the hopes that it would kill off any microscopic errant tumor cells left behind.

May 24 turned into a complicated, hectic day. I don’t remember most of it. Whatever feelings I had, I stuffed down, because feelings are often not helpful in the face of difficult tasks that nonetheless must be completed. Picking up that marriage license a few days prior suddenly seemed fortuitous. In Arizona, it’s possible for anyone to become ordained to conduct marriages online, so Bess sent a text to our friend Smetana, asking if she’d like to do the honors, a role which she immediately and enthusiastically said yes to.[2]

The night of May 24, I got dinner from FnB, a restaurant down the street and one that we call “New-York good”—most restaurants in Arizona are not great, and one that would be worth eating at even in New York is special. FnB was a good choice for a last meal, even though I didn’t know it was my last meal and was also too sick to fully enjoy it. After, Smetana and her boyfriend Cody came over for a wedding ceremony in the dark. We stood in the courtyard of our apartment building next to the pool, in a corner under some fairy lights the apartment directly above us had hung off their balcony. Smetana wrote the ceremony with the aid of ChatGPT, and Bess wore her emergency wedding dress, which I think she’s had since she was a teenager. Make of that what you will.

It wasn’t what we’d planned. We admittedly planned nothing. Who can, in the face of a fast-moving, aggressive cancer that upends plans like Godzilla upends cities? But if we had, I had a feeling it wouldn’t be what happened. Cancer has a way of crashing the party. Thus, our “crash” wedding.

There wasn’t much of an immediate celebration. I fell asleep early: exhaustion, oxycodone, and a day full of tension will do that. I don’t know how much Bess slept, since she’s prone to insomnia when stressed. The next morning I got up early and saw, briefly, my brother and sister, who much later told me that I looked like shit, or a walking corpse, or both—I don’t think either had realized how bad I’d gotten. I’m not sure I realized how bad I’d gotten. Bess and I drove to Mayo and checked in. I don’t remember the exact sequence of events, except that there was, of course, some kind of problem with the lab order for the Natera blood sample and Bess had to last-minute wrangle the test for me (it had to be done pre-op or not at all) with the help of an oncologist named Kat Price at Mayo Rochester, and her own sweet-talking of the lab techs. What I mostly remember is the fear I kept in check, and Bess waiting in the pre-op area with me, but eventually Bess having to depart and anesthesiology putting me under.

The old me died on the table. The new me is still being born, and may not wholly be born.

When I woke up sufficiently to form memories that night, I knew quickly that something was wrong. I couldn’t think properly, but I had a sense that things were not well. Early on, someone—a nurse, I assume—told me not to turn my head. Someone—I think Bess, though I’m not sure—said that the hemi-glossectomy turned into a total glossectomy. The tumor had spread too far, too fast, and had taken out both major blood vessels in the tongue, so the whole tongue had to come out. However bad that night was, many worse days followed. In some ways, the horror of that period is still with me. By July 21, less than two months later, another six to eight tumors had grown. If I’d known how things would shake out, I likely would’ve pivoted to chemo and clinical trials the moment the surgical biopsy came back. But I didn’t and couldn’t.

I can’t believe it’s been a calendar year, and not, say, fifteen. I’ve lived a lot of darkness. I feel like I’m only now, after a whole year, reaching towards recovery from the surgery, the chemo, the clinical-trial drugs, although the trial drug I’m currently on causes GI and nausea side effects—and they appear to be worse for me than for most recipients. The exhaustion that comes with surgery is underrated and under-discussed. There are still moments when I forget what life is for me: the other day I looked at some of the first Rainer cherries of the summer, and wanted to buy them, then remembered I’d have to blend them, which defeats a lot of the point, and I almost cried in the grocery store.

The likelihood of me living to see another anniversary is low—probably under 20%—but not 0%. The clinical-trial drugs are for now keeping me alive. I know I’m supposed to feel joy and gratitude at still being corporeal, and sometimes I do, but often I don’t (though I am grateful to everyone who has helped me, and that includes thousands of people, ranging from strangers who donated $5 on Go Fund Me to oncologists who oversee clinical trials). Sadness dogs me. The struggles remain acute. I’m typing this at my desk, and in front of me is a cup on a bed of tissues in which I have to routinely spit. I don’t know exactly how many times a day I have to spit daily—dozens? more than a hundred?—but it’s a lot. And that’ll be how every day will be until the last. Yet I am working on finding meaningful, generative ways to live. Without those, what is there?

If you’ve gotten this far, consider the Go Fund Me that’s funding ongoing care.

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[1] Send an email if you’re curious about the video.

[2] She’s a generally immediate and enthusiastic person.