MARY ESTHER -- In a world without COVID-19, Mike and Phyllis Milonas would still be stunned by grief.
They would be turning over the news they got last week that, at 46, Mike has inoperable colorectal cancer. He’s undergone chemo, radiation and surgery in the past four months, but doctors couldn’t get it all.
And even a little cancer is cancer, they told the Mary Esther couple, who will celebrate their 21st anniversary next month.
But it all would have been a little bit easier without COVID-19.
They would be surrounded by family and friends who could help with the complex medical care that has fallen on Phyllis in these strangest of times. She would have been with him during his 12-day hospital stay instead of waiting and worrying alone, first in a Pensacola hotel room and later in their home.
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She would have seen him after surgery and known how extensive his wounds and aftercare would be. She would have been trained in how to change an ostomy bag and drain and pack wounds.
Instead, it wasn’t until the morning of his five-plus hour surgery July 2 that she was told she wouldn’t be able to be with him after his surgery, that she could only see him briefly in the hallway.
The day before she had been told she could sit with him post-op for about an hour.
The rules changed that quickly.
She was in the hallway when they wheeled him past her.
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“He squeezed my hand and he said, ‘Oh baby, it hurts’ and he was squeezing my hand so hard. And they put him in an elevator and I took a picture for his mom so she could see he was awake,” Phyllis said. “I went back to my hotel room. That was it. I picked him up 12 days later.”
Mike was diagnosed in late January, just before the world knew what was coming next. When he first started chemo and a 35-day radiation treatment at Woodlands Medical Specialists in Pensacola, it was late February.
He was usually the youngest person in the crowded waiting room. Phyllis was always by his side in those first weeks.
Day by day, it changed. First, there was extra paperwork. Then temperature checks and questions — the same ones day after day. The temperature check moved outside. The waiting room emptied out. Phyllis started waiting in the car.
Twelve weeks after chemo and radiation ended, Mike was scheduled for surgery at West Florida Hospital. That’s where it started getting really difficult because of the COVID, he said.
After their brief post-surgical encounter in a back hallway, Mike lay alone for 12 days in his hospital room with no visitors, relying on overworked staff to help him every time he needed to get up.
“I’m a pretty positive person, so I stayed positive,” he said. “But at some point, it’s just hard. “You’re just alone in a room. Sometimes they don’t check on you for six hours. It’s not their fault. Sometimes at night I could hear people screaming, ‘Help! Help!’ Staff was run thin.”
At home, Phyllis waited, cleaning and recleaning their home to keep herself busy. She cried, a lot, she said. She and Mike Facetimed, but he never showed her the extent of his multiple surgical sites. She had no idea that he would need extensive medical care at home. And that it would fall on her, despite her complete lack of training.
She got a call on July 14 that he was being discharged immediately due to COVID precautions. She drove up to the hospital. He came out in a gown and hospital socks and a nurse loaded him into the car and handed her a bag with one day’s worth of medical supplies.
Phyllis describes the ride home as pure adrenaline along with relief at being back together. But when they got home and he got into bed, she was shocked at his condition. He had leaking wounds, an ostomy bag, a catheter and a drain tube.
“I’ll do anything for this man,” she said. “I’ll do anything for him. But what was overwhelming was the first time I saw him.”
A home health nurse visits three times a week. Mike, who has EMT training, does what he can himself, including packing his leaking wounds with fresh gauze twice a day. Phyllis does the rest.
They are very much alone.
Their 20-year-old son, Kyle, lives in the other half of the house but doesn’t go near his dad, for fear of exposing him to COVID.
Their daughter was due to fly home from Las Vegas on Father’s Day. It was to be her first visit in four years. They told her not to come, that she wouldn’t be able to see him, to touch him or hug him. Not long after, she came down with COVID.
Mike hasn’t seen his parents in months, even though they live a half-mile away. His father has also tested positive for COVID.
Phyllis and Mike are on lockdown, terrified that COVID will kill him even faster than the cancer.
The couple is careful not to get political about their frustration with the precautions others aren’t taking. But they beg others to wear masks, socially distance and avoid crowded situations where COVID is more likely to be spread.
They know it’s inconvenient, but having cancer is worse.
“This has all been going on since the beginning of March,” Phyllis said. “If more precautions had been taken, maybe they wouldn’t have had to shut the hospital down again. It didn’t have to be this bad.
“People debate on whether or not wearing a mask makes a difference,” she added. “Why would we risk lives if we don’t know for sure?”
As far as Mike’s cancer, they don’t know what’s next and neither can talk about it without crying. They see the oncologist today.
Mike is slowly recovering from the surgery, though.
On Saturday, they walked to the mailbox together. The next day, they walked down the street and back. He wanted to go around the block, but she was worried he wouldn’t make it back. Monday, he walked a half mile.
They have always been close, since the day she pulled up a stool next to him at a now-defunct Mary Esther bar more than 20 years ago.
They still choose each other.
“She’s always stayed by my side, just been there for me when I was hurt,” Mike said. “I love her. I don’t want to hang out with anyone else. She’ my best friend.”