Support on your Journey
to Well-being
With Larry Payne, D.Min., LPC
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
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.
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The story grows only wilder. I’d like to share it with you.
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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..
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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.
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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.
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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!
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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.
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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.
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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….
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Logbook 3- A Taste of Death
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.
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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.
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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.
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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.
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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."
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Progressive Christian spirituality has some good news that's helped me deal with all of this.
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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.
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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!
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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.
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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.
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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.
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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, 2025.
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!
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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.
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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!
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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.
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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.
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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.
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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.
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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!
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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!
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For nine days the surgery was healing great. Then…
Logbook 5: Blood and Prayer
Warning: This episode contains a graphic description that might offend some readers.
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The human tongue is an amazing organ. Packed into this 3-inch-long organ are eight intertwined muscles. These muscles enable the tongue to move in varied shapes for vocalizing speech, chewing, and swallowing. Adult tongues have as many as 10,000 taste buds that can distinguish hundreds of flavors. Such a busy organ requires lots of blood to operate. Three major branches of arteries and veins supply the flow. This includes the “Deep Lingual Artery” running along the lower portion of the sides.
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I found out more than I've ever wanted to know about the Deep Lingual Artery ten days after my partial glossectomy that removed the pre-cancer cells and about 20% of my tongue. The evening of February 17, 2024, the artery hemorrhaged, creating severe bleeding that would not stop. Jan and I were in Austin visiting our daughter, Lauren. She was not home at the time, and the preschool-aged grandchildren had just gone to bed. As I continued to spit bright red blood into the sink, Jan called Lauren home. Lauren and a friend drove me to an independent emergency care clinic.
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I walked in with a bucket of blood and an active wound bleeding more by the minute.
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The doctor was able to use a surgical seal to rapidly close the wound that had damaged the lingual artery. The bleeding stopped! I could go home. But… I had lost and swallowed so much blood that I vomited a terrible bloody mess in the reception area and passed out. The nursing staff rushed me back to the treatment room. With all this happening, it was time for an ambulance ride to St. David's emergency room. With Jan and Lauren by my side I settled comfortably (?) for a long night of nursing observation. The concern was about dangerous blood loss—about 40% of my total volume. The overnight stay at St. David's stabilized me but extended the recovery process by many days while the hemorrhage—and the emotions of my caring family—returned to normal.
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Here's a Lesson for everyone I’ll share at no extra charge: in an emergency just call an ambulance and go to the hospital ER!
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Returning my blood volume to the proper level took several weeks of restricted activity and supplements. I learned to live with a tongue that worked differently, slurring some consonants. Lucy, a friend who is a retired speech therapist, gave some good lessons for me to work on. I had the most trouble with the "S" sounds. To rebuild my speech, I used a phrase multiple times each day: "I share a song of sapphire seashells shining and sloshing in the surf of sunny, southern Sicily."
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Lots of people were praying for me throughout the episode. In my theology, God is continually active in influencing all entities of the universe, even as all things in turn affect God and others. This makes prayer critically important. In petitionary prayer, God inspires empathy and gives vision for the impact the prayerful energy can create. We do not pray to convince God to do something but to join God at work. God has not determined what will happen, which would make our petitions irrelevant. Instead, we are co-creators of the future in prayer. The words of theologian Bruce Epperly help us. “When we pray, we align ourselves with God’s vision for us and experience greater divine energy. Our prayers, in an interdependent universe, create a field of force that enables God to be more active in our lives and the lives of those for whom we pray. Our prayers create new possibilities for divine and human activities and may influence the nonhuman world in amazing ways.” [1] You, God, and many other factors are linked in a matrix of interaction. This makes prayer vital. Every prayer is a thrilling collaboration with God to actualize a better world.
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As the weeks of 2024 went by, the surgeon felt that my tender tongue needed help. He recommended improving the alignment of my teeth to give a wider space with less friction for the tongue. I started Invisalign treatment in July. It's something I should have done many years ago, as that might have prevented the leukoplakia getting started. Honestly, the trays were inconvenient and got in the way of my speech and eating. Over the next months though, I was pleased with the results on my bite and even my appearance.
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However, all was not well on my tongue. The summer months brought an ominous development. The surgery wound healed but the painful, red leukoplakia lesions appeared in new places, just like they had before. Every bite and sometimes the words I spoke were painful. I endured for months, hoping the sores would disappear and seeing the doctor several times. Finally, in January 2025, the ENT surgeon said, "I don't know what to do for you."
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That left me with the sobering reality: I had to find some answers to this leukoplakia nemesis on my own or risk the development of oral cancer….
[1] Bruce Epperly, Praying with Process Theology. RiverLake Press, 2017. P. 7.
Logbook 6: The Gift(?) of Pain
On the last day of a vacation to Italy, Jan and I stood on the sidewalk in Sorrento, eager to catch the express bus to the airport in Rome. The bus stop was on the sunny side of the street, so I suggested we stand with our luggage in the shade across the street. The wait lengthened but finally the bus roared down the street, paused across from our wildly waving hands—and roared on! I walked around the corner, hoping it had stopped. No luck. We were left standing, stunned and unsure of our next move, a long way from our ride home to Texas.
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I had the same feeling in January 2025 when I left the surgeon’s office with his curt dismissal, “I don’t know what to do for you.” He had no treatments to suggest for the painful lesions of leukoplakia on my tongue that had persisted after the first oral surgery. I felt left behind with my disease as the bus of my hopes roared past.
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What to do?
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​​​I immediately contacted another local ENT but was not accepted to his care. What now? The answer came from my physician son, Drew. He directed my attention to an article on the disease written by a specialist at M.D. Anderson Cancer Center in Houston. Dr. Mark Chambers had been working with leukoplakia patients for years as Professor and Investigator in the Head and Neck Department. With Drew and Jan urging me on to do something, I placed a call for an appointment on February 10. My Valentine’s gift on the 14th was an intake call with a nurse at the world-renowned cancer center. In contrast to Italy, we were on the bus for this adventure!
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A biopsy performed days later showed the leukoplakia was “cancer in situ,” or one step away from invading the deeper cells of my tongue. If allowed to continue developing, those cells would become oral cancer. The time to act for a remedy had come.
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Dr. Chambers offered wonderful, attentive care on my first visit to Houston. There was no question that another surgery would be needed. I met with the Chair and leading head and neck surgeon at the Center, Dr Jeff Myers. His examination revealed the disease had spread to the base of my tongue. A larger surgery would be necessary, including having a pathologist present in the OR to make sure all the cells were excised.
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Does pain have any real value? Only emotionally twisted personalities would say they like pain. Our nervous system is fine-tuned to withdraw instantly from the hot dish that burns our finger or the halt our movement with the back muscles stab with too much strain. I fully admit to being wimpy! Living with chronic tongue pain for two years was way too much. But pain plays a vital role in our health. It is the essential warning system to sound an alarm that demands our attention. Philiip Yancey interviewed many medical researchers to conclude, “The pain network performs daily protective service. It is effectively designed for surviving life on this sometimes hostile planet… Pain is not God’s great goof. It is a gift—the gift that nobody wants!”[1]
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It was pain that had driven me to seek treatment. I probably would avoid oral cancer if all went well. I wasn’t going to miss this bus.
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Dreading my second and larger glossectomy but eager to get the proper treatment by a world-class physician, I scheduled the procedure for April 29, 2025.
[1] Philip Yancey, Where is God When it Hurts. Zondervan Publishing 1977. P 29
Logbook 7: Less Tongue, More Hope
I once participated in a team-building Trust exercise. I stood on an elevated platform with six co-workers beside it. I was instructed to turn my back toward them and fall backward so they could catch me. These folks were just normal people, not weightlifters or licensed body catchers. It was all about trusting the group to catch me before I smacked the ground, right?
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I felt a similar trust when I rolled into the operating room at M.D. Anderson Cancer Center April 29, 2025, for my second surgery to deal with leukoplakia, the pre-cancerous growth on my tongue.
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I’d like to share an update on my journey on how a chronic illness has affected me over the past three years.
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To hit rewind for a moment, painful lesions appeared on my tongue in August 2022. Topical treatments made no difference. My diet, speech, and even sleep patterns declined with the pain. The diagnosis was leukoplakia, pre-cancerous cells that had brought painful sores across the right side of my tongue. The standard treatment was a partial glossectomy, removing the affected portion of my tongue. My first surgery in February 2024 was only partially successful. I had breakthrough bleeding 10 days later that sent me to the hospital and cost me days of weakness due to blood loss. In the week that followed, the pain from the lesions continued, a clear sign that only some of the leukoplakia had been removed.
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In late 2024 my physician son, Drew, made the recommendation I go to the world-renowned cancer center, M.D. Anderson in Houston. I began work with them in January 2025, leading to the moment I was wheeled into the operating room for a second surgery on my tongue.
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I knew I could trust the surgeon, Dr. Jeff Meyers, as he had a proven track record of a world-class specialist for head and neck surgery with years of work at M.D Anderson. The team in the OR obviously knew their stuff as they prepared me, answering with a laugh my question whether they had ever done this before. The anesthesiologist asked whether my mask was comfortable, but I was in dreamland before I could answer.
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While I snoozed, the team stretched out my tongue so Dr. Meyers could work. The doctors examined each section of tissue to make sure the mutated pre-cancer cells were removed. When all the diseased area excised, Dr. Meyers used a recently developed synthetic skin graft to cover the wound.
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Jan and Lauren sat with me in a patient room as I returned to real life, recovering my bearings for an overnight stay to make sure all was well. Their presence meant everything as they took care of my needs and communicated with friends and family. After one night in the hospital and another in the nearby Rotary House, it was time to head home. The pain stayed surprisingly low. Jan compared this surgery with the one last year at the local hospital as modern medicine versus the country doctor of 19th century wild, wild West!
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However, on the third day, the pain hit like a truck. This revealed the inadequate pain management from the surgeon’s office, forcing Jan and my physician son Drew to create a multi-medicine plan that would keep the pain at a tolerable level. Five days after the surgery, the graft came off as expected, forcing the pain level up three notches.
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The good news arrived with the pathology report. The surgery had removed all of the “moderate hyperkeratotic dysplasia,” (meaning the pre-cancerous cells)! I lost a good chunk of my tongue, yet that seemed acceptable if the danger of cancer was gone. I felt grateful to learn the tongue muscle remained intact and could return to normal action with training!
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With careful management of the pain pills by my #1 nurse, Jan, and her carefully prepared soft diet, I improved. In a few weeks, amazingly, the painful sores were gone, leaving my mouth pain-free for the first time in nearly three years!
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I have reflected many times on the fact that, out of 8 billion people on the planet, I could find—and afford with insurance—the first-class medical care. Did I deserve some divine favor? Absolutely not. I was the beneficiary of many random events, for example, conception by a wonderful white couple living in the USA, a personality that pushed me forward, opportunities for education, work that gave financial provision, and much more. In addition, a network of family and friends supported me, and even more—the work of the ever-active God was revealed.
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Process-Relational theology holds that God connects with every entity to offer an “aim” while the choices are being made. In every moment, the Spirit lures us in love to make the best available choice. The list where God had worked around me is long: parents making loving choices across much of my lifetime, dedicated medical researchers and professionals striving for better treatment, faithful prayers collaborating with the Spirit, loving emotional companionship from family, and more. I am a living example of God’s all-encompassing mercy that is “new every morning!”
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I did nothing to earn these mercies. God’s essential and foundational nature is love which extends to all entities in the universe. This non-coercive love doesn’t manipulate the cells of my body or my choices of healthcare. I am free to follow the influence of the Spirit or not. The consequences are mine and those around me. What the Bible shows is that God is continually learning and working with even my bad choices to draw me towards the best. In collaboration we can create a future that moves toward shalom.
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One way I can collaborate with God’s aim and mercy emerged in the first follow up visits when I met Dr Carly Barbon, a speech pathologist. She tested my speech patterns which had been greatly affected by the loss of so much tongue tissue. She gave me exercises for my tongue and speech. She made it plain, with a faint echo of how God works, that the future was up to me and how diligently I would do my assignment. I had just been enrolled in tongue school!
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My most recent follow up brought real encouragement with no signs of the leukoplakia. Though my tongue had been without any pain for several weeks, I felt thrilled to have that confirmation of success against this chronic illness. Even more, Dr. Barbon gave my an “A” grade on my tongue school work! My enunciation had improved quite a bit. She rewarded me with more exercises as an advanced tongue school student!
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The modern world with advanced medical care and lifestyle comforts is a product of God’s wisdom embodied in human labor. Science and technology have brought more health benefits to billions than at any time in history. But there is no guarantee for this to continue. Retrogressive, anti-science policies can turn back progress. There is nothing of God’s love in ideologies which stop research, penalize practitioners, restrict funding, and even withdraw lifesaving programs from millions of needy people. As one who has benefited personally and in my immediate family from high quality healthcare, I must be an advocate for more research, more care, and expanded access for all. I hope you’ll join me as a part of God’s work to bring well-being to many.