The Wednesday after the first American died of COVID-19, my husband got the news every cancer survivor lives in fear of hearing. The cancer was growing, time for surgery, radiation, chemotherapy. It would be his fourth brain surgery in thirteen years, this time only seven months after the last one. His oncologist and surgeon scheduled him for the following Friday.
But when that day came, the surgery was delayed. The hospital was implementing new virus protection measures. 36 Americans had died, and more were being diagnosed all the time. Not in Chicago, yet, but O’Hare was flooded with Americans fleeing in advance of Trump’s European travel ban, and there was no doubt the virus would spread out from there.
The hospital called to inform us that our three children were banned from the hospital campus. I packed a bag for myself, and began giving them extra hugs and kisses. Just in case.
His surgery began the following Monday, on the day the American COVID-19 death toll reached 81. The lobby was eerily quiet. The number of hand sanitizing stations had grown, but many of them were empty.
An hour into my husband’s surgery, his oncologist called. The new hospital policy was that doctors were not allowed to go into areas of the hospital that didn’t house their offices. She wouldn’t be able to visit him in the hospital. She might not be able to see him in person again for a long time.
By the time he was recovering in the ICU, the hospital adopted a “designated visitor” policy. Grateful to have packed my bag, I moved in, anticipating that if I left his room I might not be allowed to go back in again. By the time he was moved out of the ICU and into the neurological ward, plastic tents were being erected on the street outside, for testing patients.
It was Tuesday, and the number of dead Americans had grown to 98.
We Skyped the children when we could. Doctors warned us they wanted to send him home without rehab. I argued back. He couldn’t walk, let alone handle the stairs up to the accessible bathroom and bed at our home. They relented, and by the time he made it to the facility, 1,201 Americans were dead. The people of my state, of many states, were sheltering in place. Nonessential businesses were closing down. Businesses were shuttering forever.
Every day at the rehab facility brought new restrictions for me. Questionnaires to answer before I could return to the room with a fresh permit each day. I was banned from anywhere outside the room and the parking garage. Each morning I had to have my temperature taken to renew my badge.
We Skyped with the kids, tracked symptoms, and did our best to set up at-home care as outpatient facilities closed. His oncologist called to tell us radiation would be off the table for the coming months, as the radiation suite had confirmed its exposure to COVID-19.
He got a fever. It was higher at night, and fluctuated during the day. His lungs hurt when he breathed deeply. He was so tired he often fell asleep mid-sentence. Before a nurse could come in, they had to put on paper gowns, two sets of gloves, a hat, paper boots, and goggles.
I was permitted to stay in order to reduce the number of people who had to enter. I wore a mask and stood on the inside of the door while orthotists and nurses and doctors handed me whatever he needed through a crack.
They told me if his fever went up to 101, he would be moved to the COVID wing to be tested, and I would have to leave. I would have to find a place to go that wasn’t my home, and wait for Mike’s results to come back positive to have a chance of getting my own test.
Instead of COVID-19, they found he had bilateral pulmonary embolisms, blood clots in both his lungs. His doctors decided his risk of death was less staying at the rehab, a non-medical hospital, than going to the emergency room.
On that day the American death toll reached 5,794. The children were two days into their new e-learning program, and I hadn’t had a chance to help, to hug them, to see them in person for two and a half weeks. They were at our home with their grandparents, under strict quarantine orders. None of them were sick, none showing symptoms. I knew they were safe.
Despite his escalating symptoms, every day his doctors performed a calculus. Was his risk of death from complications of a pulmonary embolism greater at a rehab facility without a surgical ward, without IV blood thinners, two blocks away from a hospital; or was his risk of death greater if he went into a critical care center full of COVID-19 patients.
Although I’ve made my way home twice, my husband hasn’t seen his children in almost four weeks. I’ve transformed our garage into a decontamination center. There are tables for decontaminating groceries and mail with antiviral cleaners and bleach. We strip down and change into clean clothes before entering the house. There is hand sanitizer, and disinfectant wipes for the garage door buttons and light switches and doorknobs. Once inside, it’s straight to the shower before interacting with the kids.
Any time I’m out of the house, I wear a homemade cloth mask, usually with a pocket for a filter made from a blue shop rag. In the car, I keep another bottle of hand sanitizer, disposable gloves for pumping gas, tissues for pushing the buttons in the hospital parking garage.
When we finally got the word it would be safe enough for him to go home soon, 12,064 Americans had died of COVID-19. But the world from doctors and nurses in the hallway tells a different story. They talk about patients arriving in ambulances, suffering COVID-19 symptoms, only to be declared dead on arrival without testing.
In four weeks of critical brain cancer care, we have not seen his oncologist once. We have no plan for chemo going forward. In thirteen years of brain cancer, we have never been so lost.
But however many Americans have died of COVID-19 in this last month, how many have died from other things? From cancer and heart attacks and strokes, because the ICUs are full of patients with a deadly and deeply contagious virus. And as the numbers continue to rise, how many more people will die because they couldn’t access an ICU?
I don’t know how long it will be until we can access the life-saving care we have depended on for over a decade. I don’t know how long we will have to keep our children locked up and away from their friends, if we will have to officially homeschool next year, if we will become hermits until a vaccine for COVID-19 is available to us.
What I do know is that this isn’t only a crisis of a virus. This is a crisis of healthcare access for all of us, for every reason.
The death toll from this pandemic is much higher than the numbers are prepared to show.