When I published Winds of Time in June 2018, I had three unfinished manuscripts in the works. My writing was on a roll. I had eight books in print and hoped to publish at least one a year until retirement, at which time I hoped to write full time. My daughters were married and had families of their own, and my husband, Johnny, was fully supportive.
Then in November of 2018, Johnny was diagnosed with a neuroendocrine carcinoid of the small bowel. By the time he was diagnosed, it had metastasized to the liver. He was given a prognosis without treatment of three months. With treatments, which included monthly injections that didn’t come without side effects, his prognosis was 3 to 10 years. Since he was already stage 4 when diagnosed, his oncologist believed it was closer to 3 years, but I am an eternal optimist, and Johnny was a fighter. I convinced myself he would live at least ten more years. Johnny believed he wouldn’t live much longer than his father who died at 67 from leukemia. But however long he had, we both knew Johnny would make the best of that time.
In January of 2019, Johnny began his monthly his monthly visits to the Duke Cancer Center for Sandostatin injections. He saw his oncologist every 3 months and every 6 months, he had a CT scan and/or a PET scan. After just 3 months, the treatments seemed to be working.
When was Johnny was diagnosed, he retired, and I stopped writing so we could travel and spend more time together. For the next year, Johnny and I spent time with both of our children and their families. We visited his mother in her assisted living facility and we spent time with my mother and family.
We went to our camper at the beach, and we went to the mountains. We spent a day at Biltmore in Asheville, North Carolina.
We hiked to as many of the 250 waterfalls in Bevard County as a four day weekend would allow.
We visited the Cradle of the Forest in Pisgah Forest.
And we drove along the Blue Ridge Parkway.
Then in December of 2019, seven years after a diagnosis of congestive heart failure, my dad died. He was 83, but at least I still had my mother.
Between Johnny’s monthly treatments, we continued going to the beach, eating out, and spending time with family. We even checked off an item on our bucket list. We flew to San Antonio, Texas to see the river walk and the Texas missions, including the Alamo.
We visited the Buckhorn Saloon and the Texas Ranger museum, and we ate the best briquet tacos I’ve ever eaten.
In November 2019, we booked a cruise to Mahogany Bay and Cozumel for late May. Then COVID hit and our cruise was cancelled. Carnival refunded our money, and South West gave us flight vouchers, but we had no idea when or if we’d be able to use them. The country went on lockdown, and Johnny still had stage 4 cancer. He was just doing a damn good job of living his best life and doing as much as he could in the time he had left without complaint.
While the country was on lockdown, I kept working, and I x-rayed a lot of people with Covid.
When the schools closed during Covid, my oldest daughter, Jennifer, quit her job at UNC hospital to homeschool her daughter. Even after the schools reopened, she opted not to return to work. She wanted to be there for her daughter and to be available for her dad.
On June 2, Johnny woke up with right sided numbness. He thought he’d slept on his right side wrong, but when his limbs didn’t “wake up” he took a shower and then called my daughter. When she fussed at him for taking a shower first, he said he was pretty sure he’d had a stroke and figured it would be his last shower for a few days, and he wanted to be clean. Yes, the man was definitely practical.
My daughter called me at the hospital where I work and told me she was bringing her dad to the ER. The second she said. “Don’t panic but…” I knew it was serious.
Because I work at the hospital, I was allowed to stay with Johnny, but my daughters had to wait outside the ER on a bench for updates and wear masks. I kept them updated, and when they wheeled Johnny out to the MRI truck, they were able to see him very briefly…from a distance, but he knew they were there and spoke to them.
The head CT was negative, but a brain MRI revealed Johnny had had a stroke, and he was shipped by ambulance to Duke. He wasn’t allowed a single visitor. My only contact with him was via FaceTime. My only consultations with his doctors were by phone. It was a terrible five days, but Johnny came home on our wedding anniversary. We celebrated by the pool and teased him about doing anything he could to get out of buying me an anniversary gift.
At that time, we learned either the cancer, the treatments, or both were damaging his right tricuspid valve, and that was what had most likely caused his stroke. His condition was stable, but he was placed on an aspirin regimen and statins. His cardiologist warned him he’d need surgery to repair the heart valve, but Johnny refused to undergo heart surgery until it was absolutely necessary. He didn’t want to live the rest of his life recovering from yet another medical procedure or surgery. His doctor agreed his condition was chronic, not acute, and it was safe to wait…for awhile.
As Johnny recovered from his stroke and lockdowns ended, we began taking more trips to the beach. We even spent July 4th at North Topsail Beach, a beach we’d never visited before. We ate out again but mostly, only at the beach, and we lived as normally as possible under Covid restrictions and mask mandates. According to my husband, when you’ve been given an expiration date, you don’t stop living out of fear of getting sick. Despite my many exposures at work, I never got Covid.
After Johnny’s stroke, he began having trouble with his kidneys and the doctors put in stents. In February of 2021 Johnny was due to have his stents changed for the third time, but his preop Covid test came back positive, so the surgery was postponed for two weeks. He quarantined at home and we slept on opposite ends of the sofa. We still ate together and watched TV together. His only symptom was a large blood clot in the corner of his left eye that resolved on its own. Thank, God.
In late February, we bought a pontoon boat. Johnny had always wanted a boat that would accommodate the entire family. We took the maiden voyage in April 2021.
Also in April, Johnny finally had his stents exchanged without incident, but two weeks later, he started feeling fatigued and short of breath. Toward the end of the month as I was leaving for work one morning, Johnny seemed “off.” So I called my oldest daughter, Jennifer, and asked her to check on her dad after dropping her daughter off at school. And just like the year before I got a call at work. Jennifer said her dad was confused and had difficulty walking. We thought it was another stroke. We were wrong.
By the time Jennifer pulled up to the ER, Johnny was unable to walk on his own and seemed incoherent. I was allowed to stay with him in the ER and he was allowed one other visitor. Johnny spiked a fever and had a seizure. A lumbar punctured revealed he had bacterial meningitis.
He spent ten days in the hospital, and came home on our Mother’s Day. Once again, we teased him about doing anything to avoid getting me a gift.
Soon after lock downs ended, Johnny’s mother was transferred to a nursing home. In August of 2021, we took a family vacation to the beach, and Johnny and I took a side visit to his mom. Masks were still required, but my mother-in-law’s mental state was failing. She didn’t know who we were in masks and seemed upset. We were allowed to take her outside and lower our masks. I don’t think she knew who I was, but she seemed to recognize Johnny. It was a bittersweet visit, but I’m glad we finally got to see her. She died three weeks later in September.
Two months later in November 2021, my mother fell and broke her ribs. Because of her recent hospital stay and her continued difficulties after the fall, we didn’t gather at her house for Thanksgiving. Johnny and I celebrated with our children and grandchildren and two days later, we checked another destination off our bucket list. We flew to to Key West, Florida. The moment we landed, I got a text from a co-worker. Jennifer, one of my dearest friends and coworkers, had gotten Covid–most likely from a patient she’d x-rayed the day before Thanksgiving.
I’d known Jennifer for years and our families spent time together at the beach. Her daughter, Caroline Kelly, is a model, and Jennifer came up with the idea of a collaboration. Caroline was my cover model for Winds of Time, and her mom was the photographer.
During our Key West trip, I kept tabs on Jennifer. She was unable to speak on the phone but we exchanged a few SnapChats and despite everything, Johnny and I enjoyed our trip.
The Miami airport was a nightmare, and Johnny had to rest that first day, but we had a nice suite in a resort in Islamorada.
We saw beautiful sunrises and sunsets and were able to drive down to Key West for a day.
It was a good trip but my friend, Jennifer was never far from my mind, and the week after we got home, we attended my youngest daughter, Lauren’s baby shower. A week after that, my mom was in the ER with
The week after our return from Florida, my mom was well enough to attend my youngest daughter’s baby shower. A week after that, my mom was in the ER with severe pain and confusion. An abdominal CT revealed she had a perforated diverticulitis that would require surgery–a complicated surgery because she’d already developed an abdominal abscess. She spent Christmas in the hospital. I spent Christmas Eve with her and after working a half day Christmas day, I spent the afternoon and evening with her.
Johnny and I celebrated Christmas with our children and grandchildren the day after Christmas. We gave our two granddaughters each a sled full of gifts. It was as if we somehow knew it would be their last Christmas with Papa John.
We had Christmas dinner and then spent the rest of the evening outside by the firepit, steaming, shucking, and eating fresh Oysters Johnny and I had gotten at the beach the week before. Despite everything, it was a wonderful Christmas and the last one Johnny would ever celebrate on Earth.
In early January, Jennifer Kelly died. Everyone at work was devastated. I was heart broken. Jennifer was one of my best friends, and I loved her like a sister.
That same week, my youngest daughter, Lauren, got Covid. On January 10th, she delivered her son while in quarantine at the hospital. No visitors were allowed, and her husband could not leave the hospital after they got there, but my grandson was born healthy and Covid free.
Nearly a week after his birth, after everyone tested negative for Covid, we were able to meet him. He was our first grandson, and Johnny was thrilled.
In mid January, Johnny’s CT scan showed some improvement in his liver lesions, and according to Johnny, his cardiology visit showed his heart was stable. I now believe it wasn’t. A couple of days after meeting our grandson, Johnny got sick. His Covid tests were negative. Mom was still in the hospital, but there’d been complications during the surgery to repair the bowel perforation and drain the abscess. She’d come out of surgery with a colostomy and sepsis. For days she didn’t know my name, but in a lucid moment, she said, “It doesn’t matter if I remember your name or not as long as I remember what you mean to me.” I cried. She didn’t, but after a month in the hospital on IV antibiotics, her, long term memory returned. Her short term memory did not, and she was no longer eating. They sent her home on hospice a few days after my grandson was born. I thank God everyday that she got to meet him.
Mom’s house has a large den, so my brother and his wife made room for the hospital bed and oxygen machine mom would need to live out the rest of her days. My brother and his wife took turns sleeping in the den with her at night, and my sister, brother and I rotated staying with her during the day. Her sister spent many days with her and a few nights, and family was in and out visiting her for the next four weeks. She even had 48 hours of terminal lucidity. During that time, she was able to reminisce and say goodbye, giving us all a sense of peace and closure.
Johnny was able to see mom during one of those moments of lucidity. I didn’t hear their conversation, but my daughter cried telling me that he told my mom it would be the last time he’d ever see her, even though she lived two weeks after Johnny’s visit.
His cough had gotten worse, and the rest of us assumed it was Covid. So did the doctors. They quarantined him and twice more they tested him for Covid, and twice more it was negative. Johnny continued to quarantine up until the morning my brother called to tell us mom had died during the night.
Johnny went with me to her house that morning. He stayed as my brother, sister and I made the arrangements and hospice picked up her body to take to the funeral home where she would be cremated. Johnny was also with me at my mother’s funeral, which lasted through the afternoon and into the evening, but after returning from the funeral home, Johnny stayed in the den away from the crowd who’d gathered in the kitchen and outside by the pool. His cough had gotten even worse, and he was short of breath. After yet another negative Covid test, a chest x-rayed showed pneumonia, congestive heart failure or both. I assumed pneumonia because he had not yet been diagnosed with CHF, and his doctor proscribed antibiotics and narcotic cough medicines. Even if he had CHF, with treatment, people could live for years with it. My father had lived at least 7 years after his diagnosis.
Johnny’s birthday was a week after my mother’s memorial service, but he was too sick to celebrate. In late February, his cough got so bad I took him to the ER at the hospital where I work. He had fluid around his heart. He spent two nights in the ER awaiting transfer to Duke so the cardiologist could drain the fluid from around his pericardial sac. He was sent home directly from the CICU the next day with a good prognosis, but his lower extremities started to swell.
He followed up with his primary care provider and was put on fluid pills to get the fluid off his feet and legs and help with urine output. He felt better for a couple of days before he developed worsening edema (swelling) in his feet and legs. He refused to go the doctor because he had a follow up cardiac appointment in two weeks and a follow up surgery to have his renal stents changed. I was convinced changing out his stents would help with the fluid. He said he was too, but I think he knew it was nearing the end, and he didn’t want to spend his last days in the hospital. He told me to go back to work and my daughters took turns staying with him while I worked. Lauren was still on maternity leave, and Jennifer would come over after dropping off and picking up her daughter from school. Johnny just wanted to spend time with family and he spent the next few weeks with his children and grandchildren.
On the day of Johnny’s preop for his renal stent exchange, the anesthesiologist did not pass him for surgery. Johnny was retaining too much fluid, and the diuretics weren’t helping. Although Johnny claimed he was urinating without straining, I know now that wasn’t the case. He just didn’t want to spend his last days in the hospital. That same afternoon, he had an appointment with his cardiologist who told Johnny he’d have to admit him if the diuretics weren’t working. Johnny refused to go to the hospital, so a stronger diuretic was prescribed and he went home. My daughters and grandchildren continued to sit with him during the day while I was at work. He insisted he’d know if he needed to go to the ER., but on Thursday, I went to work to fill out FMLA papers. After assisting with two stereotactic biopsies, I’d planned to go home early. But after lunch, I had this sick feeling in the pit of my stomach. So with FMLA papers in hand, I left work and headed home.
While driving down the interstate, I got a call from my oldest daughter. Johnny had gone to the bathroom and after three hours, not only had he been unable to urinate, but my daughters believed he’d had a heart attack. They called 911 and my youngest daughter, Lauren, followed the ambulance to Duke.
So I bypassed my exit and drove to Durham. When I got to the ER, Lauren was with her dad, and he was in a hallway with other cardiac patients awaiting a room. They did serial EKG’s on Johnny and started him on a Lasix drip for the fluid in his lungs and extremities. After midnight, he was admitted to a cardiac room in the ER. Around dawn, he was transferred to a room on the cardiac floor but transferred again to the critical care unit by lunch time. That was on a Thursday.
I spent Thursday night in his room, wearing the same scrubs I’d worn to work. The hospital was still under Covid restrictions, so I had to wear a mask when anyone came in the room, and Johnny could only have one other visit. My youngest, Lauren, came to the hospital at lunch time so I could go home, shower, and change. When I got back around 5, Johnny was awake and alert. Laruen went to the hospital cafeteria to get us both some supper. She stayed until visiting hours were over. Then she went home.
Sometime during the night, Johnny had a cardiac episode that required a central line and IV drugs to stabilize his blood pressure. While they were putting the IV lines in his neck, I had to leave the room. Johnny was sedated and resting comfortably when I was allowed back inside. By the time Lauren got back to the hospital the next day, they were putting her dad on dialysis because the diuretics weren’t working. He now had fluid in all of his extremities and his neck, and he was fading in and out of consciousness due to the medications they were giving him, but he was resting. He was sent for several imaging tests that showed there was no fluid trapped fluid in his kidneys. They had just stopped working, and he was now in right sided heart failure. When my daughter left that night to go home to her family, Johnny said the strangest thing to her. He said, “I hope everything works out for you.” He simply told me “Thank you. I love you.”
Those were the last words he’d ever speak. That night, Johnny went into an abnormal heart rhythm and he had to be defibrillated. That’s when they told him they needed to put him on a ventilator so they could regulate his heart beat. The goal was to get the fluid off his body and stabilize him enough for heart surgery. Johnny looked into my eyes, I knew it would be for the last time. He looked frightened and sad, but I told him the ventilator and dialysis were only temporary. He nodded. Against all odds, I was still praying he would get better and have the surgery. Silent though it was on his part, he knew it was the last communication we would ever share.
Lauren spent the next day at the hospital, and we FaceTimed my older daughter, Jennifer. She was allowed to see her dad, and he was briefly able to see her before they injected more medicine into his IV’s and he was once again in a sedated sleep.
I didn’t eat supper that night. Lauren had brought me snacks, and I ate something…I don’t remember what. She left a bit before visiting hours were over to get home to her six week old son and four year old daughter. I made a nest in the corner of Johnny’s room, turned on a Movie, and tried to rest. I remember the movie: Olympus Has Fallen. I don’t think I was actually watching, but it was noise that camouflaged the sound of the ventilator and the beeping of monitors. At some point, I dosed off and was startled awake by the doctor kneeling down by the recliner where I slept. There were nurses and doctors everywhere. Johnny’s heart had stopped and they’d shocked him back, but it was time to have THE discussion. Johnny didn’t have a living will, but we had discussed his wishes, and he did not want extreme measures and long term ventilation to stay alive. He wanted life or to be let go. It was time to let go.
I remember going into the waiting room to call my daughters. I called Lauren first because she’d been the daughter to stay with him this hospital visit. Jennifer had been the designated visitor when he had meningitis the year before. I remember the shock, fear, and absolute heartache in their voices. Jennifer was momentarily in denial. She hung up the moment she realized it was real and called her sister so they could ride to the hospital together. I know Lauren drove, but to this day, we haven’t discussed that long car ride to Durham or what they talked about in the car that night–or if they even spoke. I also called Johnny’s brother, Tony, who’s a pastor. Despite Covid restrictions, he was allowed to be with us during some of Johnny’s final hours.
Jennifer, Lauren, Tony and I gathered around Johnny’s bed. The doctors and nurses hovered as silently as possible so we could have that precious time with Johnny. Tony prayed with us and stayed with us for…I don’t know how long. I think it had been three am when I made the last phone call. By four thirty, the doctors said it was time to decide. There was one more thing they could try–one more heroic, last ditch effort to stabilize his heart. I don’t remember the procedure, I just remembered that I would have to consent because it was a dangerous procedure that required inserting catheters into his groin and hooking him up to more machines–a procedure that could kill him. We discussed it. Jennifer, Tony, and I thought it would only prolong the inevitable. Lauren, my baby girl who is so much like me–so optimistic and always hopeful, wanted to try, and I wasn’t going to be the one to argue with her. I stated my point of view and was silent while my two daughters talked about it. Jennifer wasn’t pushy, but she is my grounded child. She is by no means a pessimist, but she is a true realist. I was going to let them make the decision, but when the doctor came in with the paperwork, I broke down. Signing those papers was not what Johnny would have wanted, and I couldn’t do it. Decision made, Tony said good bye to his brother and left us alone to be with Johnny as a family.
The doctors took him off the ventilator and disconnected the IV’s. The nurses brought in chairs and my daughters and I sat around his bed. For one hour, we held his hand and talked to him while he peacefully snored. It was Johnny’s soft, snuffling snore I’d heard for years as he’d fall asleep in front of the TV. We kissed his forehead. We said what needed to be said, and near dawn, he quietly slipped away to go to his heavenly home.
Writing this had been cathartic because I’m still sad, sometimes angry, but I also know how lucky I am. For nearly forty three years, I had the love of a lifetime with a man who really was one of the good ones, and I will always remember that no matter the hurt or pain, love is worth the price.