October 25 • My brother and I were messaging. He was so excited because he had finally been approved for health insurance! He had previously been denied because of his income. Now, “thanks” to new management and a cut in hours, he qualified. Funny, sometimes the bad things that happen today, God works them for our good down the road.
Johnny didn’t require a whole lot to be satisfied. He worked faithfully, full-time, at a local pizza joint in town for about 4 years. He rented a room in an old house in downtown Louisville. He did not own a vehicle so his feet were his transportation. Some may think of him as a sort of ragamuffin. He crossed paths with all the other ragamuffins. He had his struggles, his so-called crutches, that we feared held him back from his full potential. But I believe that even if those weren’t there, he still would have lived a simple life. He told me one day, “I don’t live 100% the life I would like. But, talking to rich people…they aren’t happy either. Happiness to me now is just being thankful for what I have…and knowing I could lose even that!”
Johnny told me this not too long before he made the decision to stop drinking. (Remember the crutches I mentioned? ) He was having a few health issues, although we didn’t know the extent of them at the time. One night Johnny had a long conversation with God and decided to make some changes. A couple of days into sober living was when he found out he was approved for health insurance. It was exactly the wind in his sails that he needed.
November 4 • We were messaging again. I tried to be the good, annoying big sister, and give him an accountability check every day. That day he had been sick at his stomach and thrown up. We just blew it off as a stomach bug. A few days later he began to complain of his back and leg hurting for four straight days, but we blew it off as a pinched nerve. Well I say we blew it off, but I think we both had unspoken fears we just weren’t voicing to each other. In the back of my mind was always this gnawing fact that he had a knot on the side of his neck that he seemed to ignore, for whatever reason.
Thanksgiving Day, November 22 • My parents went to visit Johnny and were immediately alarmed by the size of the knot on his neck. It had doubled in size. He had lost weight. My dad was ready to take him to the emergency room right then. But Johnny didn’t go. That night, he and I messaged and talked on the phone until around 1:30 the next morning. He was scared. Again, annoying sister stepped in and I told him to be honest with me about what was really going on. He said he was having a “lazy eye” problem, and his legs gave out on him the previous day. But he didn’t want mom and dad to worry. I realize now, he didn’t go to the hospital Thanksgiving Day because I think he knew. He wanted one more day at home to process everything.
November 23 • Black Friday. What seems the blackest of all Black Fridays. My dad drove to Johnny’s apartment. Whether he would go willingly or not, dad was going to make sure he went to the emergency room. He went, and within 3 hours dad called me with a diagnosis. It’s funny, we all, including Johnny, had tried to play off each symptom as something separate from the other, sticking our head in the sand maybe? Even my mom went to work that day. If she’d have thought that cancer would be the diagnosis, she would have been there. But now, looking back, it seems so obvious. Dad called and asked if I was driving. I told him I was, and he told me to pull over. I knew.
Cue the trembling.
“It’s in his brain, his lungs, his liver.”
I’m not sure that I need to try to convey the details of that moment. Unfortunately, some of you know. But just imagine a scene in the movies where someone receives shocking news, and then suddenly everything is spinning and in slow motion. It felt like we were in a nightmare.
One Day at a Time
At one point while in the emergency room, my brother’s hospital gown dropped off of his shoulder and my dad noticed a dark mole. He asked Johnny how long it had been there and he guessed maybe a couple of years. A couple of years! It had also changed colors over time. This was just inches away from the knot on Johnny’s neck. Dad pointed it out to the doctor, who didn’t seem to be phased by it. Johnny was admitted to the hospital and they continued with more testing…MRI’s, CT scans, blood tests. Dad pointed the mole out to a second doctor and he had it biopsied, along with the knot on Johnny’s neck. Our motto at this time became “one day at a time.” But it seemed that each day came with more bad news.
The cancer was…
….in his spine.
….in his ribs
….his hip, his adrenals.
….it was melanoma.
Every day, several times a day, doctors would come in to give Johnny updates. I had traveled in from Georgia to help mom and dad and to sit with Johnny. One day, Dr. “I” came in. He was so kind and mild-mannered and after speaking with my brother a bit, I think he felt free to ask, “Are you a praying man Johnny?” And Johnny said that he definitely was and that he knew that God would take care of him in whatever happened. So the doctor asked if he could pray with Johnny. We were so appreciative and thankful for the gesture and compassion the doctor conveyed. Johnny immediately thanked him and said “If you don’t mind, I’d like to pray for you.” Dr. “I” said “of course”and my brother prayed what had to be the most beautiful, humble prayer over the team of doctors tending to him, and a submission to whatever God had for him in the journey. I sat with tears in my eyes, thanking God for what had just witnessed, and amazed at my brother’s strength and attitude. I know there were days that he was in so much pain and down in spirit, but somehow he would always manage to come back around to saying “God is still good.”
I want to try to remember everything in the order that it happened, but some days just blur together. But I’m able to pull out moments. Like, how he was certain that every pretty, single nurse that took care of him definitely had a thing for him. I kind of think it was the other way around. I guess that’s one of the perks of being single and in the hospital. He was the man of the hour. Then there was the nurse who put off the air that someone had stuck a lemon in her coffee. Just for a visual, she was a larger African American lady, kind of like the stern grandma-type that would spoil you like nobody’s business, make sure you left the house with your belly full, but wouldn’t hesitate to give you a good whoopin’ if you stepped out of line. Later she told us she had been nursing for 29 years! Her first visit with Johnny, she came in with not a word, not a smile. She fussed at him because he had started to struggle with swallowing and was eating a cheeseburger. She said that she may have to see about getting his diet changed. And then he said he didn’t want to eat no liquified meat. And with that, she busted out laughing. And just like he did with every single one of his caretakers when they left the room, he told her how much he appreciated her taking care of him. She was still smiling as she left the room. She really was one of the most tender and caring nurses during his time there. Then there was sweet “J”. She was another that would watch out for him. He eventually lost his ability to safely stand and was no longer able to take showers. He was embarassed at the thought of anyone having to give him a bath, but somehow she was able to break through all of that and convince him to give it a try. She had her hands full, but by the time it was all over, he was hoping every day was her shift. Every time she left the room, they would fist-bump, or he would hug her, thanking her for taking such good care of him. We watched many caretakers, doctors and visitors leave his room uplifted. He had a way of letting them know that they meant so much to him, and he truly meant it.
December 5 • Johnny went from pacing his hospital room to barely being able to walk within a week’s time. Then a week later he received a feeding tube. The tumor in his neck was pressing into his voice box and windpipe, causing him to choke and to lose his voice. In his own words, he sounded like Marge Simpson.
December 9 • He would not be able to do chemo or radiation since the cancer was so advanced. Regardless of how many times we asked, no one would give us a prognosis of time. Because of his young age, they were solely focused on doing all they could for him. His oncologist suggested immunotherapy, and with that news came some hope. If it worked for him, it would boost his immune system to fight the cancer. But, there were potentially fatal side effects as well. Johnny made the decision to try it and on December 9th he had his first treatment. The treatment went great with no obvious side effects. I returned home after my second visit and we all prayerfully waited.
My parents tirelessly took turns staying with Johnny. Dad would go in the mornings and mom in the afternoons. Tuesday after his treatment brought a trip to the ICU. His heart had some tachycardia spells. He had been there a week before for the same thing. It felt like he was forever being moved to another room. We teased with him that if he would just behave he wouldn’t keep getting kicked out.
December 13 • The Thursday morning after his treatment, dad arrived to find my brother had declined tremendously over night. He couldn’t even stand the weight of the hospital gown on his skin. He was in so much pain, especially in his head and legs. The palliative doctor finally told Johnny that he had just a matter of time. They removed his feeding tube and IV and moved him to the Hosparus wing of Norton’s. At that point they said he had days, maybe a week. So Philip and I made plans to head back to KY to the next day, Friday. I finished up some loose ends with my business, and we packed in anticipation of my brother’s passing and funeral. It was such a long night, like a horrible dream. Only I couldn’t wake up and make it stop.
My mom had stayed with him that night. He suffered tremendously. I can only imagine how she must have felt watching her baby in pain and not being able to take it away. I’m still amazed at my parents’ strength through all of it.
December 14 • That morning, mom told dad that he was declining rapidly and felt like it wouldn’t be long. Yet the Hosparus nurses still said it could be a few days. I called mom and had her put her phone to Johnny’s ear. Just in case, I said to him what I would say if I was there, and told him we were headed to see him but told him that if he was tired it was okay if he needed to let go. I tried to sound strong but wasn’t very successful. Inside, I was crumbling. I still wavered with whether we needed to be in a rush but my gut said that we needed to leave immediately. We did. At the same time, I knew it was a huge weekend coming up for Philip and our church, and leaving meant we would be bailing on all of it. But Philip brought me back to my gut feeling and said we weren’t turning back.
The trip home to KY is 5 1/2 hours from here, but that morning it felt like 500. We made it to Johnny’s bedside at around 3 P.M. I will keep all the intricate details private for now, although you are welcome to ask me about them in person. My brother drew his last breath at 4:31 p.m, just 90 minutes after we arrived. I wonder sometimes if Johnny was waiting until he knew that all of his family was there. It was painful and precious at the same time. Being with someone in their last moments is life changing. We have peace knowing that Johnny left this life surrounded by those he loved and that he had made peace once again with his Creator. We were able to say all the things we had hoped, with no regrets. He was pain-free the moment he took his last breath and that helps on these days where we miss him so badly.
Yesterday marked two weeks since Johnny’s passing. I’ve tried to use the days since to grieve and process. The last month has been non-stop, from Johnny’s diagnosis to pressing through the holidays. It’s strange how grief manifests itself. Two days after Christmas I climbed in bed and stayed there all day. Yesterday I got out and tried to do “normal” things but felt weak after just a few hours. My mom sent a text around 4:30 with this picture and I felt a wave of nausea hit.
Some days there is numbness. Then there are moments of anger, questioning, and of course, tears and sorrow. I miss him so much. He is the only person on the planet that I literally grew up with so the world feels a bit more lonely. I miss his goofiness. I miss worrying about him walking home from work at 2 a.m. But then there is gratefulness that I had 41 years with him. And the last 3 weeks with him were like heaven on earth. We had precious moments together as a family that could never be conjured up by our own power. And God provided for Johnny to have insurance to cover his care. God is still good.
Then I think about the things about Johnny that will stay with me for the rest of my life. All of his life’s possessions fit in the corner of my parents’ dining room. He was a simple man, and I find myself wanting to be okay with living a simple life. He saw everyone as a person worthy of a smile and kindness. Despite what some would call a humble lifestyle, he still was glad to offer a helping hand to others even less fortunate than himself. His focus after his diagnosis was simply to glorify God and be a light and encouragement to others.
Now my only focus is helping others and maybe be a bit of a light.
-Johnny (Dec. 2 on FB)
He truly appreciated the ones that were looking after him. I will never forget how he would simply say, “thank you, I really appreciate you” and follow it up with a handshake or a hug. It was amazing to witness those simple words change the disposition of a person. Many times in the hospital he would reach out his hand and I would take hold of it. Sometimes he would say something like, “I’m sorry I threw that bike tire at your head when we were little” and I would say “I’m sorry I clawed you when you annoyed me.” Sometimes he would simply say,
“I love you Jenny”.
“I love you too Johnny.”
My world will never be the same without you, but it is better because you were in it.