LARRY'S LEUKO LOGBOOK

I am on a journey with oral cancer. My purpose in sharing this story is to encourage the well-being of readers by chronicling my journey with Leukoplakia treatment. I'll be sharing the medical experience, frustrations, progress, and--I hope--some insights that can help anyone.

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Logbook 1- My Nemesis
Logbook 2 - Hello Leuko
Logbook 3- A Taste of Death
Logbook 3.5- April '25 Surgery
Logbook 4- A Small Member

Logbook 1- My Nemesis

I stumbled into the urgent care lobby holding a bucket half-filled with blood. My pale, blood-stained face and the commanding words of my wife brought a rushed march past the reception desk to a treatment room. Perhaps a bit startled at my sudden appearance at this midnight hour, a doctor and a small staff of nurses started working on my life-threatening medical emergency.

The story grows only wilder. I’d like to share it with you.

Leukoplakia is my nemesis, a growth of painful cells that can lead to cancer, that appeared on my innocent tongue in the Fall of 2022. The bloody bucket formed another twist in a long, winding path that isn’t over yet. In a few days I’ll have a second surgery to remove another part of my tongue. More on that later..

I'm writing "Larry's Leuko Logbook" to share with you more about my journey dealing with potential oral cancer over the past three years. The story involves family, friends, medical professionals, treatments, mood swings, mortality, and yes, God. It’s been part confusing, part frustrating, part frightening, and part amazing--and maybe all those at once. Through this Logbook I hope to share a story that will enlist your spiritual engagement with me, promote your well-being and entertain a bit. The journey isn't over, and I'd like you to share it with me.

Logbook 2 -Hello Leuko

Sobbing, Jan rushed to me with the phone in her hand, crying, “Bub just passed away!” The call from her family brought the tragic news that her only brother and daily email partner had collapsed from a sudden cardiac event just hours before he was to leave the hospital. A few days later I sat with her and three of our children grieving the great loss. A bad fall just days before brought a severe shoulder injury and hospitalization. He had made progress toward dismissal when something went terribly wrong. The crash team rushed to his side but he couldn't be revived. The storm of grief with its emptiness, regret, confusion, and even anger rippled across the entire family. My eulogy preached to an overflowing crowd that day in June 2022 remembered a vibrant, joyful man, distinguished professor of psychology, wise patriarch--gone all too quickly. Saying good-bye felt so profoundly hard for all of us in that Joplin, Missouri funeral chapel. The dark specter of Death stood too near to me once again.

I’m recounting the story about the funeral because, little did we know, a diabolical virus had slipped into our bodies to hitchhike back to Texas. Jan fell ill and I followed soon after. That deadly devil who had brought death and misery to millions, COVID 19, had arrived. We joined the victim list in spite of our up-to-date vaccines, mask wearing, mask manufacturing, and protection for two years of pandemic fear. Now the antibody medicine, Paxlovid, was available. We got the pills and felt grateful that our symptoms were mild compared to the terrible loss of millions of lives worldwide. After brief days of quarantine, we were back in action socially. Even my three-mile run felt normal.

Except… we noticed some peculiar effects: Jan’s tastebuds went haywire and small sores erupted inside my lips. Her highly sensitive taste, a boon for all the wonderful cooking across the years, signaled she was eating sheet metal. 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, dear God, I didn’t back down from the pumpkin pie!

My feelings about all this were normal for anybody, I guess. I felt frustrated and a bit angry at having such a reaction when many people didn’t. I felt concerned because it just wouldn’t go away.

God and I were connecting through this with a different perspective than my early theological training. Even in my 26 years as a Pastor I didn’t follow the typical Southern Baptist doctrines. The welcome move in 2002 away from those devolving creeds to chaplaincy and counseling broadened my views of God’s larger work. In 2018 a refreshing new view, Open and Relational Theology, defined God’s non-coercive essential love as 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.

Going back to the final months of 2022, 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….

Logbook 3- A Taste of Death

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Death. Not a thrilling subject, right? I get that--but my Leuko Logbook must be authentic. So, death is an honest topic that's on my mind. If you don’t want to read any further, that’s okay. I’ll have happier topics to discuss in other episodes.

During 2023, I wasn’t thinking about it either as my life hummed along. 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? That meant those 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. Ironically, my taste of death was actually slowly killing my tongue and tastebuds.

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.

Some of you, my friends, have known this type of medical news and the sudden ticking of life's clock louder than a jackhammer. It’s a part of being human, mortal. Only God and angels (if angels exist) get to evade the process. Suddenly, I was enrolled in the same school as millions of others who live with a chronic illness. During the past years the anxiety about this journey brought some heavy feelings. That’s normal, I think.

Death is a big part of any faith tradition. I was baptized at age nine because the fundamentalist preacher said I would go to Hell after I died if I didn't do the right prayer. I have three degrees in religious studies that took seriously the truth of Ecclesiastes, "To everything there is a season… I time to be born and a time to die." 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 all of this.

I know Love is the essential nature of God. That Love means a profound relationship with me (and you too, dear reader). I am not now, nor will ever be, separated from this life-giving Love. I know that every entity and human is alive in a material and a non-material existence. 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 constructs/consciousness that manifest the material world.

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!

In these moments of living earth-side, I know God is presenting to each thought the best possibilities as a lure for me to choose. God doesn't control my choices. The future is open. I am invited to collaborate with the Divine energy to co-create as much Shalom from each moment as possible. In fact, every cell of my body and every person in my world has such an invitation that may be chosen in the great quest for abundant life with God. This is what "salvation" is all about.

With this rather somber episode notwithstanding, let me report the doctors assured me that my prospects are good for taking up oxygen for several more years if I had the surgery.

With hope to deal with my condition, I scheduled a partial glossectomy for February 2024.

Logbook 3.5- April 2025 Surgery Update

Let me share an update on my latest Leuko adventure.

First some context for those who have read the first three installments of "Larry's Leuko Logbook." Those stories have looked back to when the pre-cancerous cells appeared in 2022, through treatments in 2023, and then to my preparation for my first surgery in February 2024. There will be further pieces that describe my experience with the difficult events which happened in the remainder of 2024 and what I’ve learned that might be helpful for your life.

But today, this Logbook 3.5 Update is all about my surgery this week on April 29.

Bottom line: the surgery went fine. Dr Jeff Myers is one of the leading oral surgeons in the nation and Chair of the Department at M.D. Anderson. After the two-hour surgery he reported that he had removed the leukoplakia cells on my tongue until the margins were clear under the pathology microscope. He attached a synthetic skin graft that will aid healing. I will be working with a speech therapist in the upcoming weeks. I look forward to being back on the Bright Star Farm soon.

Jan has been an amazing nurse, dietitian, counselor, and executive assistant through all of this. I'm doing better with her careful work! The prayers, encouragement, and compassion offered by family and friends have been vital for me.

Stay tuned for more of my Leuko adventures! I appreciate your continuing prayers and support.

Logbook 4 "The Tongue a Small Member

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 the like “a fire…stains the whole body…a restless evil… a deadly poison” to describe this amazing organ. 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 shifting 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.

The doctors always expressed some amazement I had leukoplakia because I had none of the lifestyle habits (smoking, chewing, drinking) that foster the mutation. It was a random situation with no statistical probability of occurring. My Open and Relational theology is okay with random events. I believe God’s essential nature is Love, and love is non-coercive. This truth requires God to share some degree of freedom with all other entities in the universe. God doesn’t control other entities in the universe, rather God and the universe collaborate—or don’t—to create all that occurs. Random events are a part of this freedom. In our bodies healthy cells continually interact with their environment and with the constantly dynamic DNA within. Within these trillions of interactions there is the possibility of error, of malformation, or damage. Some of my tongue cells made wrong “choices,” if you will. To stop the process on my tongue, God would need to violate his own nature of non-coercive love. Not a good idea!

As I readied for the surgery, I couldn’t help but think about Jan and her resilience to bounce back from several surgeries. Apparently, her cells make a lot of poor choices because she has had surgery to deal with the early stages of colon cancer, lung cancer, thyroid cancer, and scoliosis in her spine! In all of this she has been a paragon of strength to endure and rise above the pain from having four children and 13 surgeries.

Now it was my turn to have surgery, my very first one after 71 years. I was prepped and rolled into the operating room. The mask over my face felt so comfortable and…. Zzzzz’s occurred. Two hours later I emerged from la-la land. 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 Drew were there to cheer me on and 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.

Lesson: Before your scheduled major surgery, get a pain management regimen from a pain specialist, internist, or at least your PCP! Your surgeon doesn’t know (or care sometimes) about your pain during recovery. Our bitter experience with multiple surgeries has taught us this vital lesson. The many different types of pain pills and intensity of dose must be handled well. You won’t get addicted with a good practitioner and you’ll be glad you made the effort. So will your family since they won’t hear as much whining.

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!

I finally felt good enough to travel to 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…