Larry's Leuko Logbook, Part 2: Handling Chronic Illness

In this personal episode, I share how dealing with a chronic illness brings constant challenge. My experience of treating pre-cancerous oral leukoplakia confronted me physically, emotionally, and spiritually. This episode chronicles the journey from inconvenient pain to risky surgery as the disease progresses. I share my story, theology, and insight with the hope of supporting anyone facing chronic illness or difficult situation. 

Segments include:

 A deadly condition appears

New perspectives of God’s essential love 

A shocking diagnosis stirs thoughts of mortality

Everlasting connection to the Divine

Whittling my tongue to save my life

(Photo JoeyNicotra on unsplash.com)

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Chapters

• 0:42 A deadly condition appears
• 3:56 New perspectives of God’s essential love
• 5:29 A shocking diagnosis stirs thoughts of mortality
• 8:31 Everlasting connection to the Divine
• 10:40 Whittling my tongue to save my life

Transcript

The attack hit me as a total surprise.  A diabolical virus slipped into my body while I attended a funeral in Missouri. The secret hitchhiker rode back to Texas and before long began to do his work. My wife, Jan, fell ill and I followed soon after. COVID 19, the deadly devil who had brought death and misery to millions, had arrived on the Bright Star Farm. In July 2022 we joined the victim list in spite of our up-to-date vaccines, mask wearing, mask manufacturing, and protection during two years of pandemic fear.

Hi friends, I’m LP the host of TFJ, a network dedicated to your well-being. In this episode I continue my story of dealing with Leukoplakia, a chronic, pre-cancerous condition on my tongue. I hope you’ll find some meaning in the story, the theology, and the encouragement if you struggle with a chronic disease or condition. The first episode is available as a podcast or Youtube video titled, “My Leuko Nemesis.”

After the bout with Covid ended, we noticed some peculiar effects: Jan’s tastebuds went haywire and small sores erupted inside my lips. Throughout the Fall my symptoms worsened. Large sores on my tongue made eating painful, especially with spicy, hot, cold, crunchy, citrus—well, just about anything. Jan produced a sumptuous Thanksgiving feast for the entire family though nothing tasted normal to her. I chewed carefully to avoid the sores that throbbed with every bite. But I didn’t back down from eating the delicious pumpkin pie!

My doctors and dentists knew I had no risk factors for any oral cancer. My primary care physician suggested an allergic reaction was producing the red, painful lesions that spread across the right side of my tongue. I started seeing an Ear, Nose, and Throat specialist. He assured me after a brief visual exam it wasn’t cancer, a fear that had haunted my mind for weeks. Whew! That was a relief and meant this would surely go away in time…. 

Being a minister, I of course engaged in spiritual reflections about my pain. In 2018, a refreshing new view, Open and Relational Theology, had grabbed my attention. The school of thought defined God’s non-coercive essential love as a foundation for faith. That paralleled what I had been experiencing. I wrote in my diary, “The essential love of God, Christ universal, ultimate salvation for all through Jesus, the Bible as narrative, Spirit working in all things and people, science as ally, the future open and collaborative—it’s where I am, and pleased to be.” A profoundly Biblical view of God as ever-present, all-loving, and fully-active enriched my worldview. I never guessed how vital these beliefs would be for all that would come with my chronic illness.

As 2023 unfolded, my life hummed along in a normal fashion. We enjoyed grandkids growing, cared for the pecan trees, worked at church, and even sailed the blue Mediterranean Sea. My only problem was the persistent painful sores on my tongue. I took extra vitamins, stopped drinking soda, used lidocaine laced mouthwash, yet still this problem wouldn’t go away. Finally, I asked the ENT doctor to do a biopsy in the search for answers. The pathology result wasn’t good: dysplasia. What? I’d never heard of that. After 18 months of medical care which missed the diagnosis, I felt shock to learn the sores on my tongue had become mutated cells that would lead to cancer. Surgery was needed. What? Surgery on my tongue? That news wasn’t the kind of present I wanted for Christmas, 2023. But in February 2024, it was time to sharpen the knife against my illness.

I'm the last living member of my nuclear family. Mom died of cancer at age 72. Dad died in a car wreck at age 75. My sister, Judy, died of ALS complications at age 74. My brother, John, died of injury-induced dementia at age 74. Can you see a pattern that is disturbing? It seems to say being 72 years old in my family is a dangerous time.  

I’ll be honest: it shook me to hear that I had a chronic, prelude-to-cancer, no-known-cure illness. You see, I had told God that dying at age 95 was okay with me. Preferably peacefully with no suffering. Maybe I didn’t hit "Send" on my prayer mail. 

Across 50 years of ministry, I've preached more funerals than weddings. I've been in the hospital room as a chaplain more times than I can count, watching quietly as patients took their last breath on this earth. I know the departure from physical existence on Planet Earth is really, really, real. I don’t have nightmares about the grim Reaper standing by the bed. But my journey with dysplasia and leukoplakia has made real the inevitable moment when "the roll is called up yonder."

Progressive Christian spirituality has some good news that's helped me deal with this chronic pain and surgery. 

I know Love is the essential nature of God. That Love engages a profound relationship with me, and you, and all entities in the universe. I am not now, nor will ever be, separated from this life-giving, divine Love. I am both a carbon-based life form and a hyperdimensional life form. God is also within this matrix, interwoven in the energy of the physical world and the mental consciousness across all life forms. 

Based on this dynamic relationship, I know God holds all my identity, thoughts, actions, and failures--the total record of my existence--in everlasting consciousness. Just as the light from a far-away star may continue after that stellar body blows itself up in a supernova, so my consciousness will always be shining in divine experience. I don't need a "soul" because I am ensouled in God. God and I have a long, good road to travel ahead!

With hope to deal with my condition and deep appreciation for medical care and family support, I scheduled a partial glossectomy for February 2024. The doctor assured me that my prospects are good for taking up oxygen for several more years if I had the surgery.

The Bible records the Apostle James ranted about the tongue. Preachers do that at times, getting loud about subjects most of us ignore. He called the tongue a “small member,” and used words about it being like “a fire…stains the whole body…a restless evil… a deadly poison” to describe this amazing organ. He was using analogy to warn about the power of our speech, of course. But a rant like that could make a person want to cut out their tongue!

Advice: don’t do that! My tongue is indeed a small member… and it got smaller on February 7, 2024. That was my first “partial glossectomy” to deal with the leukoplakia that was morphing to cancer cells across my tongue. After two years of painful sores, I had come to the point of action to deal with this disease.

I was prepped and rolled into the operating room. The mask over my face felt so comfortable and I took a journey to la-la land. 

Two hours later I awakened to the news that the deadly cells had been removed from the upper layers of skin on my tongue. I surprised the nurse by saying with some clarity, “The rain in Spain falls mainly on the plain.” She thought that was good considering my tongue was 20% smaller! Jan and my youngest son, Drew, were there to cheer me on. Soon I was on the way home. A piece of cake, really.

Until the third day, that is. Searing pain surged throughout my mouth and jaw, like my tongue was at the wrong end of a blowtorch. I couldn’t eat anything. My medical care team. Dr. Drew Payne and Jan, created a schedule of pain management, a feature neglected by my surgeon. I took something for pain every three hours. My liquid diet kept me going when the swallowing was too painful. Jan’s patient caregiving overcame my whining as the days went by and I slowly improved.

A few days after the surgery came the best news: the pathology report showed all the margins were clear and no cancer was found! The naughty cells were gone forever!

Within a few days, I had improved enough to travel and see the grandkids. We had a great visit. I even did a three-mile run at an easy pace. Quite the man!

For nine days the surgery was healing great. Then… 

More about what happened on Day 10 in the next chapter…