The day of my husband’s surgery finally came and I felt a nascent paranoid dread. Before saying goodbye, I hugged my children as though I might not see them again for a long, long time.
My husband Mike was diagnosed with glioblastoma in 2007. We had been engaged less than a day when he was rushed to the hospital and learned about this most aggressive primary brain tumor. He has had multiple surgeries, rounds of chemo and radiation, and clinical trials over the last 13 years—all while becoming a father of three, earning his Master’s degree, and working in the field he loves.
In early March, we learned he needed to have another surgery as soon as possible, followed by chemo and radiation. The news hit us hard. It would be his fourth brain surgery, but his first during a growing global pandemic.
During the nine days between when we received the news and his surgery date, I pulled the kids out of school to be with their father at the hospital, loaded up on staples so I wouldn’t have to worry about running errands between the kids and Mike’s care, and refilled prescriptions. As I gathered essentials, I watched the panic buying begin in our small suburb located in the collar counties of Chicago. Hand sanitizer: gone. Bleach wipes: gone.
Eleven hours before his surgery was scheduled to begin, Mike’s nurse called to tell me they had to postpone the procedure. Due to the rapid spread of COVID-19, new viral containment precautions meant Mike wouldn’t be allowed into the operating theater for an additional three days. Our children would also not be allowed on hospital grounds. We cocooned ourselves in the house, and watched on television as throngs of people defied public safety measures to celebrate Saint Patrick’s Day.
The day of the surgery finally came and I felt a nascent paranoid dread. Before saying goodbye, I hugged my children as though I might not see them again for a long, long time.
Mike’s oncologist called two hours into his surgery: She was no longer permitted to visit him on the surgical recovery floor, a new policy aimed at preventing viral spread. His neurologist was also prohibited from assessing him while he was still on the surgical floors.
By the time Mike was through with his nearly five-hour-long surgery, the hospital had mandated that only one designated visitor could be present in the hospital at all. I decided to stay with him, leaving our three young kids with their grandparents. At the time of this writing, nearly two weeks later, I still have not seen them.
The procedures hospital staff must follow have changed by the hour. Ziplock baggies sitting on a table outside my husband’s hospital room door are labeled with the names of doctors and nurses: Each contains the single mask they must re-use each time they enter.
Every day we’re here, my movement is restricted more and more. There is no guarantee I can come back in if I leave the ward, so I hunker down on the couch in his room, living off protein bars and lukewarm cups of water with teabags in them. Outside our Illinois hospital, plastic tents have been constructed as testing areas for potential COVID-19 cases.
Nearly a week after his surgery, doctors wearing masks and gloves come talk to us. They stand at the far end of the room and recommend my husband—who is unable to walk—go home with minimal rehab. “There’s already talk of the rehab hospital being used for the overflow from this hospital,” they said. “It’s best if he’s not there.”
But we can’t go home. He needs physical therapy to be able to move around safely.
Outside in the city, businesses shutter. Friends leave groceries for my children and their grandparents on the front stoop, but they do not meet face to face. The risk of spreading COVID-19 to my husband is simply too great.
Hospital physical therapists disagree with the doctors’ recommendations, and they spend several days making their case. Finally, we transfer to the rehab facility, but Mike’s access to the gyms, the therapists, and his doctors are limited. All this to protect him from catching COVID-19.
Despite his brain cancer, Mike is in good health. He has no lung conditions, no heart conditions. He’s 37 years old. He isn’t a high-risk patient. But if he catches COVID-19, he will not be able to go into radiology suites. He will not be permitted into chemo infusion centers. Ironically, both of those treatments—important for addressing his tumor—will transform him from the healthy, low-risk patient he currently is into someone with an even tougher battle ahead of him.
Meanwhile, the barriers to accessing that necessary care are mounting. One radiation center has already shut down after a confirmed COVID-19 patient received care. We do not know if we’ll have to return to the hospital, the epicenter of contagion, or if we will be able to remain at a safe distance. We do not know if Mike will have access to at-home nursing care. We don’t know if he will have access to the rehab services he needs to get back to beating his cancer.
All of these factors impact the likelihood of Mike having positive outcomes after his surgery, and currently nobody has any answers about how the hospital plans to ensure oncological patients like him have access to services like radiation and the infusion center, both critical, life-saving care, filled with immuno-compromised patients.
Amidst the constant barrage of coronavirus news updates and daily White House press briefings, what I’m not hearing people talk about nearly enough is the fact that patients who do not have COVID-19 need access to life-saving medical care too. When I hear about the rising rates of hospitalization and deaths, it strikes me that each of these beds is no longer available for somebody who has suffered a heart attack, a stroke, been in a car accident, or has cancer.
Public health experts estimate that thousands of Americans will die from the novel coronavirus. These models, however, do not indicate how much higher the death toll will be if we consider the non-COVID-19 patients who need critical medical care but can’t access it because hospitals are overwhelmed.
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We are still days away from going home to our children, and the hospital is treating my husband as though he may already have COVID-19. We are discussing how to keep him quarantined away from the children and our parents. Our precautions are no longer only about keeping his healthcare options open—it’s about mitigating the same set of questions for my father with heart disease, our daughter with asthma, our babysitter recovering from knee replacement, my diabetic father-in-law, the elderly members of our congregation.
Having witnessed first-hand a hospital morphing into a war zone, we are taking COVID-19 restrictions seriously. Mike wants to spend another Christmas with our kids, so we hope others are too.