Comment: During Covid, cancer patients now face lonely fight

Cancer patients and their families are forced to adapt to harsh complications for an already difficult fight.

By Laura B. Kadetsky / Special to The Washington Post

A doctor pointed out to me at a recent appointment that my latest bout with oral cancer tracked the first spikes of the coronavirus pandemic.

On that beautiful, cancer-free day in late May, workers chatted over lunch outside the hospital entrance, and I gawked at their carefree togetherness while I hurried by wearing my mask and gloves. It was a world apart from March, when I hastily scheduled a biopsy in case the hospital canceled ear, nose and throat (ENT) procedures entirely, and April, when I had the surgery in an abnormally quiet hospital, where coronavirus precautions were expanding daily.

In March, horror stories were flooding in, and the threat of the virus hung over everything. Waiting for the biopsy results only heightened that pandemic-induced anxiety: How do you deal with cancer when no one knows what’s safe anymore? Although it felt like the pandemic put most of life on hold, serious health issues don’t wait for a worldwide crisis to end. After I had spent 10 years fighting oral cancer on and off, the cancer was back, and I had to deal with it.

At the hospital, which already had Covid-19 patients, the danger of infection seemed everywhere. I focused on ways to try to control my risk; maybe because having cancer makes everything else feel squarely out of control. I parked on the street to avoid having a stranger park my car in the hospital garage and contaminate it. I wore my homemade dish-towel mask, because masks hadn’t yet become widely available. I covered the driver’s seat with a sheet in case my clothes picked up the virus and transferred it to the car, as this was before we learned more about surface transmission. Those things won’t stop cancer, I reasoned, but maybe they’d block the virus.

Walking the halls, I kept my eyes down to avoid sending — or receiving — accusatory looks: Did you cough near me? Why are you in the hospital? Do you have the virus? I tallied door handles: Three to get in and out of the building, each one a potential germ site. It felt bizarre to be this hyper-alert and yet entirely reasonable.

I needed a coronavirus test before the surgery, well before drive-through testing sites popped up. As much as I feared getting the virus, the medical workers rightly worried that they might get it from me. In ENT surgeries especially, working in or near the respiratory system risks the virus spreading throughout the operating room. I understood, but I obsessed about it. It sounded barbaric, adding insult to injury: I already have cancer, and now you have to jam a cotton swab up my nose, too?

In good-for-coronavirus news, the test was negative, and surgery was on; and at the start of Oral, Head and Neck Cancer Awareness Week, no less (a reminder: I don’t smoke, and I rarely drink alcohol, so everyone thinking this happens to “someone else” should have their oral cancer screening as soon as they can get to the dentist). Having been through this before, my husband and I thought we knew how to get ready. But preparing for surgery in a pandemic comes with new complications. With quarantines and the dangers of infection for our elderly parents, no family members could come to help. Physical distancing norms left us worried about asking friends for anything. I’d been having groceries delivered for years, but suddenly, I couldn’t get a slot. I found myself staying awake for hours refreshing the overwhelmed delivery website in the middle of the night, funneling my stress into obsession about how to feed my family safely and find food I could eat after surgery.

We agonized about how to tell our 5-year-old son. The anxiety of the pandemic had ratcheted up my distraction, and I’d been mixing up words for weeks. I tried to explain bandages to him and compared them to zombies. “No, Mommy,” he corrected me, giggling, “you’ll be a mummy, not a zombie.” Of course, he was right. He decided I needed one of his stuffed animals to take with me. In the face of his generosity, I hesitated, wondering how we could clean germs off a stuffed giraffe.

Between the placement of the tumor, and the multiple prior surgeries, I faced an uncertain outcome. Only after surgery started would we find out how intense it would be. No matter what, though, I would be staying in the hospital, where Covid-19 numbers were increasing daily. All the controls I’d put in place to stay safe were gone. Although I was tested, the medical staff was not all tested before touching me; let alone operating on me. I couldn’t wash my hands while sedated or wear a mask during the surgery. No one wants to stay in the hospital, but now I was bucking all the directives; not only would people not be six feet away, they would actually have their hands in my mouth and all over my face. Everything I had been told not to do was turned on its head.

And no matter what, I would be alone. Because of the coronavirus, my family was barred from visiting me in the hospital. The doctors suggested that my husband not stay in the surgical waiting room, or anywhere on the hospital campus, to find out what happened, in case anyone there carried it (although in the end, he refused to leave until the procedure was done). When they wheeled me out of pre-op, we didn’t know when we would see each other again or in what condition I would be. I couldn’t comprehend how I would manage on my own. He couldn’t comprehend not being there for me.

When we are sick, those closest to us provide a vital source of healing. Yet the pandemic makes that physically impossible. When I was hospitalized, the distance between my family and friends and me was not just six feet, but absolute. My family couldn’t act on a basic human need to provide comfort through their presence. Instead, my son made colorful, glittery drawings, and my husband covered them with cheering messages, such as, “Sending you healing powers from your #1 fans.” But notes and video calls can’t replace someone at your bedside. It is a terrible loss when those of us at our most vulnerable cannot be fully present with those who love us most; the pandemic exacerbates patients’ suffering by making that impossible.

In one version of this story, I was lucky. My surgery was one of the serious cases still allowed to proceed when many hospitals had been turned into Covid wards (shortly after waking up, I overheard someone tell another patient, “Congratulations, you have a new kidney!”). The surgeons and medical staff worked magic, and I made it through the surgery with the best possible outcome. I had access to a hospital system that saw what happened in New York and prepared before cases rose, so the medical staff caring for both me and the covid patients there knew how to stay protected.

But in the other version, being a patient right now is a nightmare. It means having to ask things such as, “Will a ventilator be available if I need it?” “Will the hospital allow my care to proceed?” “How will my husband take me to the hospital when our son is at home with no child care?” “How will I get through this alone?” Or, “When I can’t speak post-surgery and am alone in the hospital, when I can’t advocate for myself, who will advocate for me?”

People are desperate to be done with restrictions; I get it. They’re tired of being stuck at home. They want to hang out with their friends without worrying about killing them. But the virus is still out there. And the longer we let it linger, the more people will have to go through what I went through.

Laura B. Kadetsky lives outside Washington, D.C., with her husband and son. She is a nonprofit attorney and executive.

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