Finding Joy in the Journey

Joy is one of God’s quiet gifts, woven into the fabric of our lives in ways we often overlook. Unlike happiness—which is wonderful but fleeting—joy is steady, resilient, and deeply rooted in our identity as Christians. Happiness rises from moments of laughter, shared memories, humor, and rest. It’s the sweetness of a good meal, the warmth of a compliment, or the fun of time spent with loved ones. These moments matter, but they come and go.

Joy, however, is something different. It is not dependent on circumstances. It does not evaporate when life becomes difficult. Joy is anchored in purpose, gratitude, and the assurance that God is present in every season. It is a posture of the heart that can remain even when happiness feels out of reach.

I once walked alongside a colleague who had just received a devastating cancer diagnosis. She was so shaken that she could barely say the word cancer.

Having already gone through my first round of cancer, I recognized the fear in her voice. I also knew the Lord had carried me through that season, and I sensed He was now inviting me to help her discover how He might meet her in her own journey. So, we made a simple decision: in our

meetings and conversations, we would intentionally use the word joy. We did this not to deny the reality of cancer, but to remind ourselves that God’s presence could still be found in moments of grace, connection, and hope.

Finding joy along the way means slowing down enough to notice those moments. It means engaging in meaningful activities, nurturing relationships, and choosing thoughts that lift rather than burden the heart. Joy grows when we appreciate what is good, even in the midst of what is hard.

For Christians, joy is not just an emotion—it is a way of living. It is the deep, steady assurance that God is with us, shaping our days, strengthening our spirits, and filling even the darkest valleys with His light. Happiness may visit for a moment, but joy stays for the journey.

Health Update

We continue to watch and wait and are grateful for every day the Lord gives me. My medical team has described several times over the past few months that the cancer appears to be dormant. My next scheduled scans and MRI are on October 12, and I have a follow up with my oncologist on October 27. My last procedures were in June, so we are anxious to see what this army of varmints has been doing in my body during these past few months.

The best report we could receive in October would be no sign of active cancer, and we would give God all the glory for that healing. If not, we would still praise God for a good report showing the cancer remains dormant.

Some would say that I have the right to be angry if the cancer is still marching on, but I say, “Look. The God of my army is the Absolute Healer, and He works in and through me to make sure that I give Him all the credit.”

One of my buddies is good about sending me (and others) a text with several verses of Scripture. I am cogitating on one of them this week: Isaiah 55:8-11 teaches that God’s thoughts and ways far exceed human understanding and that His word unfailingly accomplishes the purpose for which He sends it. Amen, brother.

Thank you, my friends who faithfully read my health updates and blog posts. You are the BEST!

Watch and Wait

Many of us have heard this expression in communication about many things, including a child’s growth or aspirations, about making an “A” in algebra, about whether we will go to an Alison Krauss and Union Station concert, about a report on election results, and many other scenarios. But I believe that it is heard in the medical space more and more. That expression is a good one to use when we are talking about a health issue. I think that doctors feel uncomfortable making predictions about the status of a patient. They shy away from saying something that might lead to legal action by the patient’s family. I have received the “watch and wait” response many times from my physicians.

So, when I get questions from my friends that deal with how long I may live—granted they are not that candid with their questions—I can tell them who knows but God. My job is to be ready to face my Father in Heaven.

I volunteered to participate in a clinical trial for nine months, and in my first meeting with my team of oncologists, they resisted stating how much longer I have to live. But two of them ventured out past their comfort zone. The first one said about 8-12 weeks, and the second one said it is possible to live with this rare, incurable disease for months if the body and treatments continue to slow down the intensity of the cancer.

My daughter-in-love is in this holding pattern in dealing with cancer on her pancreas. She patiently waits for results of her testing. She is such a trooper about her “watch and wait,” and she is teaching me about handling all those thoughts about “watching and waiting.”

Thank you, Kimberly.

Update on My Treatment

A week ago, I had scans, an MRI, and blood work done at Emory. Next week on Tuesday (23 rd ), I have an appointment with the leader of my cancer treatment team to interpret the results of these tests and talk about options for starting any new treatments.

Because of an intestinal issue, I had a flexible sigmoidoscopy on Thursday, which was thankfully normal. I also had an endoscopy that showed a benign stenosis in my esophagus that the doctor stretched. This will hopefully help with my swallowing. We’re praying that it will not be necessary for me to have another G-tube placed into my stomach (I had one for 3 months earlier this year).

We really need prayer support through next week, and I am appealing to my family and friends to pray for us. This is a critical time to think about what’s next.

Dark Season

So many relatives and friends have been faithful in reading my blog posts over the past twenty years, and you have been so diligent in trying to get reports on my health challenges.

I apologize to you and all of my readers for the lack of blog posts over the last few months. I have just this week discovered that I had written four blog posts during my fighting days that I never posted in my personal blog or on LinkedIn.

There were many times during the last year when I just did not feel like writing. There were some dark days in dealing with pain from side effects of the infusions and just some weird stuff from the cancer and a plethora of prescriptions. But my Lord Jesus has brought me to this day and prepared me for this season of my life. Therefore, I pledge to walk with God and serve Him in the name of Jesus.

The following list will bring you up to date on events of the last few months:

• Due to a 40-pound weight loss, I had a G-tube placement on November 3. I was still able to eat normally but received supplements and some medication through the tube.

• I was released from the clinical trial on November 25 because of weight loss and cognitive issues.

• A PET scan on December 9 resulted in a diagnosis of Alzheimer's. I began medication that has been very effective.

• The G-tube was removed on February 13 because of pain and infection, but I had regained 20 pounds.

• Scans and an MRI were done on February 25 as follow-up to the clinical trial.

• Consultation with my oncologist at Emory on March 10 revealed that scans were stable, with no indication of metastasis.

• More follow-up tests will be done on June 10.

I’m so grateful to have family and friends like you who pray regularly for me and my family. I’m certain that I am still here today because God has answered your prayers. Please continue to intercede for me. It’s been difficult to deal with this triple whammy (blepharospasm, cancer, and Alzheimer’s), but your prayers and loving support encourage and strengthen us every day.

Please feel free to share this website with anyone who might be interested or encouraged by my story.

New Diagnosis and Day of Prayer

At Dad’s Nov. 4 appointment at Emory, his oncologist decided to cancel the scheduled infusion because of Dad’s progressive weight loss and cognitive decline. Since then, we have met with the neurologist in Rome to address Dad’s increased confusion, paranoia, and even delirium. At the next scheduled infusion, the oncologist informed us that Dad had been disqualified from the clinical trial because of his symptoms.

After a PET scan this week, today we received a diagnosis of Alzheimer’s.

This is not the road we could have imagined, even after finding out last year that Dad’s salivary gland cancer had returned and was terminal. The clinical trial at Emory gave us another year with Dad and fulfilled his desire to provide helpful data that will benefit future cancer research. He also blessed many people at Emory with his positive outlook, dad jokes, genuine interest in their lives and shared connections, and his hope not just in medicine but especially in Jesus.

Now, we continue to adapt and arrange support so Mom and Dad can be together at home. And we continue to love, find joy, cry some, laugh (the dad jokes are still there), remember, look forward to Christmas with all their grandchildren, and look to the future with hope.

We don’t have to understand God’s plan to trust his goodness. We say, with the author of Psalm 27, “I have asked the LORD for one thing; one thing only do I want: to live in the LORD's house all my life, to marvel there at his goodness, and to ask for his guidance. In times of trouble he will shelter me; he will keep me safe in his Temple and make me secure on a high rock …. I know that I will live to see the LORD's goodness in this present life. Trust in the LORD. Have faith, do not despair. Trust in the LORD.”

Dad does not have a phone anymore. I know your comments left here for Mom would mean a lot to her.

Mom and Dad’s dear church family at New Armuchee Baptist have organized a day of prayer for Dad on his birthday, Dec. 23, and invite others to join them. This is such a wonderful encouragement to our family, and we are deeply grateful for all of you who have prayed consistently and persistently for Dad’s health over the last year. Thank you for continuing to pray:

• For wisdom as we make decisions about Dad’s care

• That we would choose grace and practice patience

• For Mom’s ongoing recovery from knee replacement surgery and for rest and good health for her

• That Dad would continually be comforted by an awareness of God’s presence and love and experience God’s peace

• That this season would provide unique opportunities to share about the hope of our salvation and that we would be bold in our conversations about the gospel.

We thank God for all of you and all that you have meant to Dad and our family. More than one of you, I think, would remember when Dad has encouraged you in your suffering to choose joy. As we strive to choose joy in the days ahead, we hope you will think of Dad as you do the same in whatever you are facing, and we pray for God’s blessing on you.

Allison

Family Reunion

Much has happened since Dad’s last post, and I (Allison) asked him if I could write an update for all our friends who have continued to pray, even when you did not have specific details on Dad’s condition. We have felt your prayers through God’s sustaining hand as we navigated the last few weeks.

On Nov. 3, Dad had outpatient surgery to place a G-tube, or gastrostomy tube, that delivers nutrition and some medications directly into his stomach. This will address his drastic weight loss over the last year and the difficulty the sores in his mouth have caused with eating. He is still able to eat and drink as he pleases and is tolerating the G-tube well, in his body and his spirit.

On Nov. 4, Mom had knee replacement surgery. Everything went well, and she seems to be right on track, meaning she is in pain! We have a lot of support from family and friends to keep up with PT for her and follow-up and routine appointments for both Mom and Dad. They are good sports about us hovering and reminding them of medications and the like. Our spreadsheet to cover shifts at their home is titled “Family Reunion,” and it has been just that. Though we wish the reason for our reunion were different, we are reminded every day that family is a gift, including our friends that are family, and that our bonds are the fruit of the foundation Mom and Dad have laid together through the years.

Dad’s most recent post here was about his hospitalization because of elevated ammonia in his blood and its cognitive effects. He continues to take the medicine that has helped reduce and stabilize the ammonia level. So when Dad’s confusion increased rapidly again over the last six weeks or so, we made an appointment with his neurologist here in Rome, whom he hasn’t seen since last summer. Before we made it to that appointment, his latest infusion on Nov. 4 (yes, just one day after his G-tube placement and the same day as Mom’s surgery) was canceled due to his confusion observed in the clinic. His oncologist wanted to wait to see the results of his routine scans and what a consult with a neurologist would reveal. We were thankful to have the appointment already scheduled with the neurologist for the next day.

Dad has since completed more bloodwork and an EEG and his last routine scan on Saturday, so once those results are in, his doctors will consult and the next step will be clear.

We ask for prayers for wisdom for Dad’s neurologist, who is persistent in understanding what is happening with what he called Dad’s “perplexing” case; for Mom’s continued healing and good rest as she recovers; that we would all choose grace in the hard moments and in doing so display Christ’s love in our hearts and remind each other of our hope.

Thank you, family, for praying!

Ammonia

A long time has passed since my last post, so I want to bring you up to date on my treatments and my condition.  I continue to receive infusions on the same 3-week cycle with the clinical trial at Emory Winship Cancer Institute.  Scans and MRIs have been stable so we know that the drugs are working and the cancer is not spreading.  I am still experiencing some side effects – fatigue, dry mouth, mouth sores, digestive problems, lack of balance, and some forgetfulness and confusion.

A few weeks ago the confusion intensified rather suddenly, so much that Cheryl and the family were alarmed.  We could not see that anything had changed that could have caused this to happen. Our family doctor ordered a lot of blood work and tests to be done, but nothing showed up to solve the mystery. 

A retired physician friend who has been following the results of these tests suggested that an elevated level of ammonia in the blood could cause confusion and disorientation.  So – another blood test and an ultrasound of my liver, and finally we had an answer.  Medication was prescribed and I started drinking this very unpleasant thick sweet syrup on Friday night two weeks ago.

The following Tuesday, August 12, we went to Emory in Atlanta for my scheduled infusion. My bloodwork showed that the level of ammonia had risen since the previous test, and they decided to admit me to the hospital. The infusion was cancelled for that day.

 By Friday I had been examined and evaluated by numerous physicians, scanned and x-rayed and poked every few hours for more blood to be tested.  They ruled out a lot of things, adjusted some of my medication, prescribed new medication, and reduced the ammonia in my blood to within the normal range.  I was discharged late Friday evening. I am feeling better and my mind is much clearer.

Along with my medications I will continue taking that awful syrup until my ammonia level is stable in the normal range. We will follow up with our Gastroenterologist here in Rome next week.

The plan is to continue the infusions as scheduled, so we will go back to Emory on September 3 for treatment #12.

We are paying special attention to my swallowing abilities as I am easily choked on many different kinds of food. I certainly don’t want to be fed through a stomach peg, but it looks like part of my future.

During this period of silence from me, many of you guys continued to pray for me. I felt the energy of those prayers, and I am grateful that those prayers were lifted to our Heavenly Father.

I promise to be more regular with these epistles as my health allows.

Strength and Weakness

Throughout my time living in various countries, I observed that it was customary for activities to cease during the post-lunch period designated for rest. The duration of this rest period varied by country. Seven months ago, I noticed that my body was signaling a need for rest in the form of a nap after lunch. Yielding to this need, I began incorporating naps into my routine, despite experiencing feelings of guilt for what seemed like an inefficient use of time.

Initially, I perceived this need for daytime rest as a sign of weakness and worried about how it might be perceived by my family and friends; I did not want them to think that I was not resilient or was abandoning my efforts. Consequently, I resolved not to let my battle with cancer and its side effects dictate the terms of my daily life.

One of the most arduous challenges associated with managing cancer is the accompanying sense of weakness. A significant weight loss of 25 pounds resulted in the diminishment of muscle mass in my arms, legs, and chest, contributing to a perceived loss of physical strength. Nevertheless, I find reassurance in the belief that our vulnerabilities can become sources of profound strength.

When we accept our weaknesses and allow a higher power to operate through us, that power becomes more apparent. Scriptural teachings encourage us to discover strength within our struggles, suggesting that our hardships serve greater purposes. One such affirming passage is found in Isaiah 40:31 (ESV): "But they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint."

During difficult times, prayer and reflection can be powerful tools for drawing closer to the Lord. Meditating on Bible verses that emphasize endurance and hope can bring comfort, reminding us that we are never alone in our journey.

Here are a couple verses that offer encouragement in moments of weakness:

• 2 Corinthians 12:9 – “My grace is sufficient for you, for my power is made perfect in weakness.”

• Psalm 46:1 – “God is our refuge and strength, an ever-present help in trouble.”

No matter the trials we face, we can trust that God walks alongside us, offering His unwavering strength and comfort. By surrendering our fears and embracing His guidance, we find courage even in the darkest moments.

Strength and Weakness

Throughout my time living in various countries, I observed that it was customary for activities to cease during the post-lunch period designated for rest. The duration of this rest period varied by country. Seven months ago, I noticed that my body was signaling a need for rest in the form of a nap after lunch. Yielding to this need, I began incorporating naps into my routine, despite experiencing feelings of guilt for what seemed like an inefficient use of time.

Initially, I perceived this need for daytime rest as a sign of weakness and worried about how it might be perceived by my family and friends; I did not want them to think that I was not resilient or was abandoning my efforts. Consequently, I resolved not to let my battle with cancer and its side effects dictate the terms of my daily life.

One of the most arduous challenges associated with managing cancer is the accompanying sense of weakness. A significant weight loss of 25 pounds resulted in the diminishment of muscle mass in my arms, legs, and chest, contributing to a perceived loss of physical strength. Nevertheless, I find reassurance in the belief that our vulnerabilities can become sources of profound strength.

When we accept our weaknesses and allow a higher power to operate through us, that power becomes more apparent. Scriptural teachings encourage us to discover strength within our struggles, suggesting that our hardships serve greater purposes. One such affirming passage is found in Isaiah 40:31 (ESV): "But they who wait for the LORD shall renew their strength; they shall mount up with wings like eagles; they shall run and not be weary; they shall walk and not faint."

During difficult times, prayer and reflection can be powerful tools for drawing closer to the Lord. Meditating on Bible verses that emphasize endurance and hope can bring comfort, reminding us that we are never alone in our journey.

Here are a couple verses that offer encouragement in moments of weakness:

• 2 Corinthians 12:9 – “My grace is sufficient for you, for my power is made perfect in weakness.”

• Psalm 46:1 – “God is our refuge and strength, an ever-present help in trouble.”

No matter the trials we face, we can trust that God walks alongside us, offering His unwavering strength and comfort. By surrendering our fears and embracing His guidance, we find courage even in the darkest moments.

Rash

About every two weeks I experience some type of new side effect. Some are less agitating than others. The past week I have been dealing with a rash that has developed on the left side of my face—yes, everything with this cancer has been on the left side of my face. This is the same area that is numb, so how can the skin be numb and itch like crazy? I don’t know, but during my sleep it itches so much that I have scratched it until it bleeds. The rash is irritating, but in the scale of all that is going on in my body, it is minor. I believe that the Lord orchestrates everything that goes on in my body, and I believe that He lets some things like this rash carry on to remind me to pray. I itch. I pray.

Do I blame this rash on the cancer or on one of the medications? Or, mixing two or more medications that react negatively when taken together during treatment?

I am blessed to have an accessible primary care physician. I will be visiting him soon to review my medications and identify any potential negative interactions.

I hear so many stories from family and friends about how difficult it is to get an appointment with a specialist. When I wanted to see a particular neurologist about my Blepharospasm, I found one that was a movement disorders neurologist, and she was very familiar with the rare eye disease that I had been diagnosed with. In June of 2024, I called her office to get an appointment, and the scheduler gave me an appointment in June 2025.

I decided that I was not going to settle for that, so I called two times per week asking if I could get an earlier appointment. Finally, the scheduler asked me if I would like a Tele-med appointment. I said yes, and she gave me an appointment in two weeks. The appointment was very thorough, but the doctor said she would like to see me in a couple of weeks. I thought “Oh, no. Here we go again.” After my virtual visit, I immediately called the scheduler’s office, and the first question she asked me was, “Is this your first visit or are you an existing patient? “I was very proud to tell her that I was an existing patient. She gave me an appointment in ten days!

I talked with my Nurse Practitioner at Emory, and I explained the annoying rash on my face. She suggested that I get hydrocortisone ointment. I did, and it relieved some of the itching. I am on day six of using the ointment, and there is little change in the rash. 

I will not allow my cancer or its side effects to lead me into despair or self-pity. There is no room for “woe is me” in my life.

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” – Psalm 73:26

Stress

After my first treatment for my cancer, I knew that it was time to relieve myself of some stress. My daughter heard me complaining about my old Dell pc, and she encouraged me to buy a Mac. She felt that there would be a lot less stress than continuing to use my 10-year-old Dell. After persuasion from her and pushing back from me, I gave in and bought the Mac.

Over a few months I struggled trying to learn to operate the Mac, and my stress level grew higher and higher. I was trying to adjust my life to regular infusions, MRIs, and scans while trying to keep the Blepharospasm from ruining my life. There seemed to be more stress with the Mac, so I purchased a new Dell touch screen—a newer version of my old Dell. But there was another surprise that raised my stress level. The new Dell came with an upgrade of Microsoft Office. I was wondering if there was a comfort zone for my future use of a computer.

I had given away our typewriter, so I did not have a choice. I had to push forward to learning the new/revised applications.

Lesson learned: Run from stress the moment you or others recognize it. Some of us who are “D” in DISC or “T” for Tenacity in the Working Genius need to be reminded that we cannot fix everything. One of my granddaughters was having some challenges, and I was spouting off ideas, and she said to me, “Papa, you can’t fix everything.” That stung, but I am so glad that she said that to me because I try very hard to fix things that affect my family or my friends.  Sometimes I just need to listen and give hugs.

Our Angel

God brought an angel to join us six months ago on our round three cancer journey. I will not share info about our angel, only that he is a retired chair of the head and neck department of a leading American medical center. He is the friend of a friend with whom I have worked on international projects for the past 25 years.

Some who read this will say that they don’t want to be bothered with medical portals, but Emory’s portals are chocked full of great information. They give results of MRIs, CT scans, blood work and more. The problem is that a layman like me can fairly easily read the results, but I don’t understand much of the content.

Last night we had a telephone visit with Dr. Angel. I had given him passwords to get into my portal, and for an hour he interpreted all our tests from two weeks ago. Note: our medical team will explain the results on April 29 when I will have my seventh infusion treatment. But they will do it quickly and give me only what they think I need to hear.

The CT scan of my chest looked normal with no evidence of cancer. This is good because if my cancer metastasizes it will most likely go to my lungs. There is extreme fibrosis all over the left mandibular (jawbone area).

Back to Dr. Angel’s report. The MRI showed that the nerve at the base of my skull looks less plump than in the last image. This is good news because this is the result of the infusions. At this point, the treatment seems to be working. However, some of my fibrosis is affecting my swallowing mechanism. That was not good news.

I still have those mouth sores, and I am biting on some of them. We discovered at my dentist’s office this week that my jaw teeth were not coming together properly, and that has made chewing difficult. He ground all the high points of the teeth on my left side and that was a big help. After my dentist finished his work, it was like I had someone else’s teeth. Hopefully, I will be able to chew once again with my left jaw teeth. It has been over a year since I have chewed with those teeth because I was afraid of chewing on my jaw or my tongue.

These teeth problems have contributed to my severe weight loss, as well as lack of appetite and choking issues. My medical team has brought up the possibility of getting a stomach tube. Then Dr. Angel talked about it last night. Cheryl is also an advocate of my getting the tube even though it will be a big daily chore for her. I can see her slipping some Brussel sprouts into that tube while I am listening to a book or watching a John Wayne western (Did you know that John Wayne was the star of 78 westerns?). I fully understand that the tube can be removed at any time.

I just see this procedure as the beginning of the end. My Emory medical team would probably say that I am being melodramatic—or at least they would think that.

I am not afraid of death.  I guess I am thinking that I am delaying death by getting a stomach tube. But then I recall that everything we are doing is palliative, not curative. Therefore, everything is delaying my death, or better stated everything going on now is to prolong my life. I am being encouraged to think of the feeding tube as a means to prolong my life and give me a better quality of life. Anyhow, it seems that I am being encouraged from all sides to get the plumbing done!

My attempts at gaining weight are not working even though I am eating ice cream every day and multiple times on some days. I am drinking whole milk and using heavy cream. I am eating a lot of pasta. Millions of people trying to lose weight, and I am trying to gain weight so that I won’t have to get a feeding tube.

But I am concerned that I will aspirate and get food in my lungs, and that would not be good. In the end I will concede because all those who are recommending my getting a feeding tube will win the day.

I have much to be grateful for as the review of my portal results and comments are very positive. The infusions are working. I am so grateful to be a part of these clinical trials. I have an army of people from many other countries praying for me and those who care for me. Anything that has happened in my life since we started seeking treatment six months ago is all for the glory of the Lord. If God wants to show off and use my story to bring others to Him, so be it. I do not want to stand in His way, but I want to be a vessel that God will use to magnify the name of Jesus.

More Treatments

This past Tuesday was my sixth infusion. As usual, we (me and Cheryl and Jason, our driver and encourager for this visit) checked in at the reception area and they gave me a badge and the traditional plastic band to wear around my wrist. The badge is a tracking device that lets my caregivers know where I am.

We proceeded to the reception area on the 10th floor and shortly a nurse came to escort us to our assigned patient room, but on the way she had me get on the scales. I weighed 171pounds. When I started these infusions, I weighed 192.

After I got comfortable in my lounge chair, the nurse began taking my blood pressure and oxygen level. As the nurse and I were talking about what large veins I had, the port was anchored on the top of my left wrist.  Blood was drawn through the port.

Originally when I met with my medical team at Emory, the coordinator for the clinical trial stated that I would get six infusions on three week cycles. I asked why only six, and I did not get a good response.

I am sure that my medical team explained to me a lot of things that did not soak into my mind. In that first meeting we were in shock after hearing that this cancer, Round 3, was going to take my life. There were very different opinions about the prognosis. The radiation oncologist said a few weeks. Another suggested months and possibly a year. Doctors today just do not want to give any info about their thoughts on a patient’s prognosis.

I am telling you this: No matter how close to the Lord you may be, when a group of physicians tell you that you have terminal cancer, you are probably going to react in a similar manner. My eyes filled with tears at the thought of leaving my family. My first thoughts were about Cheryl. Who was going to help her? Who is going to sit with her in church? Do we have enough in our savings and investments to take care of her? In the big scope of things these all seem so trivial now. I know that the Lord is going to take care of Cheryl and our family. That is not something that I need to worry about. That is a good feeling, and it gives me comfort in my soul to understand these things.

Last Tuesday was my sixth infusion, and my coordinator had told me at my fifth infusion that it was possible for me to have more treatments. There was no excitement or enthusiasm in the way she said this, so I decided not to get excited about more infusions. I thought that after the sixth one that they would put me on the infusion that the other group was taking. I did not fully understand the importance of what she was saying during my sixth infusion.

The coordinator stated during my appointment that I could have 24 cycles if I remained healthy, and my body did not react to produce more side effects. Twenty-four cycles! That means that I could be in the trial for 72 weeks.

Nothing has changed in my routines. I still am in awe of the Lord’s ability to do so many things at one time. With all the lives that He has to take care of, He has chosen to work with my sicknesses. Thank you. Lord, for walking with me during this time.

Beard

Folks ask me questions about my beard, but I am going to answer only the one question asked the most in this post. Why are you sporting a beard? I have never had a beard for more than a few weeks until the past few weeks. Having a beard at this point in my life is a practical thing to do. It covers some of those old age wrinkles. However, those wrinkles represent challenges I have faced. The greater concern is when I have facial spasms, my whole face looks like I am in a circus side show. The beard helps to cover up those contortions. Just to be clear once again: we do not think that the spasms and contortions are related to my cancer, but to the Blepharospasm in my eyes. However, I have fewer spasms in my face since I started the infusions.

The pains on the left side of my face, where the cancer has manifested itself, have greatly reduced since starting my infusions 3+ months ago. I am on a three-week cycle now. On April 8 I will have my sixth infusion, and every three weeks we will go to Emory for another treatment. The actual time for the infusion is only 30 minutes, but the preparations, procedures and protocols take much longer. However, I am in a very comfortable chair from 8 a.m. until 1:30 p.m.

Radiation has modified my smile. I haven’t had any directed radiation on my mouth since 2020, but I have had numerous scans and MRIs on my head and face in the past year. Back in April 2024 I started having a tingling on the left side of my chin and lip. None of my physicians at that time could diagnose why the left side of my mouth would not open properly. The numbness continued to spread upward to my ear and my cheek bone. By that time, we knew that this pain and numbness was related to the reappearance of my salivary gland cancer. Children and more than an occasional adult were staring at my crooked mouth, so I decided to grow a beard.

But behind my crooked smile and my beard lies a heart full of love for people. In a eulogy for my mother and his grandmother, Jeremy talked about how Mimi made people smile through the acts of service she made all her life. Like Mimi, I want my life—and even my crooked smile—to make others smile about their relationship to God through Jesus Christ.

I give thanks every morning for another day to live. Why do I pray for the Lord to extend my life when I could be in his presence? God did not create us to live Christ-like lives and then make our own plans to die. So, every day I thank the Lord for the ability to talk openly with family, friends and colleagues about my death. I thank Him even more for the opportunity to talk with someone about my walking into the arms of the Lord as I make the transition from life on this earth to a more abundant life in heaven.

New Normal

If you are wondering what questions and topics about my treatment and accompanying illnesses go round and round in my mind, I am going to express to you some of those cogitations.

How many more side effects will be added to those I already have? Side effects from my cancer and its treatment and those of Blepharospasm get mingled —I write about Blepharospasm frequently because the side effects of this neurological disease of the eyelids, which has no cure, overlap with the side effects of my cancer. If you want to know more about Blepharospasm, look it up or look at some of my past blogs about this problem.

The Blepharospasm is causing me to gasp for air during several periods of the day. Each episode lasts from a few minutes to a couple of hours. I am asking myself if my condition of feeling like I am drowning when I am trying to catch my breath will ever happen during the night and I wake up gasping for air. That’s a scary emotion, but I have already taken care of this challenge—I turned it over to the Lord. I am actually living in His body because I am wonderfully made by the Lord. So, I have made up my mind that if I choke and die having one of these spasms, so be it. That does not release me from any of the discomfort, but it completely takes away the fear.

What will happen to my clinical trial if the government funding is cut off? The obvious answer is my trial will be halted. I have read where DOGE has already cut some funding for clinical trials at Harvard, Yale and Johns Hopkins medical centers. No government funding, no clinical trials—however Harvard and some of these medical centers have enough reserves to cover most of their trials.

What to do about the problem of chewing on my left jaw while eating and not realizing it because it is numb. This one really makes me tense because no one on my medical team has mentioned anything to fix this problem. The only recommendation that I have received is from my former college roommate who is a retired oral surgeon: pull the teeth that are causing the problem.

Numbness of my ear all the way to the left gums and all of my face down to the middle of my chin.  This is not going to go away according to my medical team. It is irritating, but it is not life-threatening, so I am learning to live with it.

Some of my medications are causing me to have some serious dry mouth. A mouthwash called Biotene is very helpful, as well as some – that I can order online. Sometimes it is so dry that I cannot speak. Water soothes the dryness for a few minutes only.

My vision is impaired. In the last two weeks I have developed a sagging or drooping left eyelid. Not sure yet whether it is caused by the cancer or Blepharospasm. We were able to get a handicapped registration which helps me get into places more easily. Just a few months ago, I was playing pickleball, and now I am one of the handicapped people who fusses at all the people who get the handicapped spaces and there is no evidence of their impediments.

I have unexpected dizzy spells that cause me to pass out for a few seconds. I have lost some sense of balance but fortunately, carrying a walking stick has helped that.

Because of my Blepharospasm, I cannot drive. Who would want to ride with an old man who may blink his eyes and not open them for 5-10 seconds?! Cheryl has stated that she is not a safe driver in the Atlanta traffic, so for every appointment at Emory Winship Medical Center, we need a driver. So far our children, grandchildren and a friend have handled those responsibilities. They sacrifice a lot of time because no matter what kind of appointment I have, it is an all-day trek. There is also the tension about not driving. I have been driving legally since I received my driver’s license at age 15. I have not been happy about this, but over the past few months, the Lord has been sending spiritual drones my way to remind me that getting up every morning and taking my first breaths of the day are a much greater gift than driving a car. I would love to go ride go karts to get my driving urges filled.

Writing down all these cogitations seems overwhelming to handle all of these plus the normal pain associated with my submandibular salivary gland high grade carcinoma. But the only thing that overwhelmes me at this moment is how could our God take a poor Mississippi farm boy and let him be a part of an exciting and challenging life working for Mississippi College, International Mission Board and Chick-fil-A nonprofit organizations.

This is a new season for the Cox family. Cancer affects everyone in the immediate family and some of the grandkids, also. I am only sorry that some of my family have to cater to me to get me to any appointments, church, pharmacy, and the bit of shopping that I need to do. My family has been amazing, and I am so proud of all of them, and I cherish each day with any of my family members.

Everything is a new normal for us. I do not remember what my old normal life felt like.

Driving Mr. Larry

Every third Tuesday we go to the Winship Cancer Center at the Emory Medical Center in midtown Atlanta. Cheryl sits in the passenger front seat, and I sit in the passenger rear seat. That has become my normal seat placement because we can darken the back seat with the pull up window shades on the back windows.  Who is going to “drive Mr. Larry” today? It’s Allison! Our kids decided that one of them or a grandchild would drive us to Atlanta for these appointments because their mother dreaded driving in all that traffic. Plus, they wanted to have one of them listening and asking questions at my visits with Dr. Shin, my medical oncologist, and the rest of my medical team.

After checking in at the reception desk on the first floor of the 18-story building (all for the cancer center), we are asked to wait in the three-story lobby until 15 minutes before our appointment on the tenth floor. All cancer patients are treated in one of the 60+ “care suites.” I always feel like I am sitting in a first-class airplane seat because the seat has six different buttons to adjust to my comfort. Other amenities are a wide screen TV and a private toilet.

We were a little nervous about my appointment yesterday because we would hear for the first time about the effectiveness of the treatment. At the beginning of every treatment appointment, a nurse draws blood for testing. They really like me because I have what the nurse called them yesterday: A+ veins. Those are the big and bold and easy to thread the catheter.  

Dr. Shin came in soon after the nurses were finished with the other prep work—temperature, oxygen level, blood pressure, pulse. He told us that I am in the ARM 2 test of the clinical trial which means that I am receiving the molecular target agent only and no toxic chemo drugs. This agent has been very effective with treating breast cancer, but it is not approved by the FDA for any other use.

These drugs do not attack any cells directly, but they assist in the production of other good cells that will fight the cancer cells and replace them. Dr. Shin reported that there was some improvement in the area of cancer cells alongside my mouth and nose, and that the cancer cells in the cavity below my brain are stable with no evidence of more growth.

Dr. Shin also informed us that I can continue these infusions on the same three-week schedule indefinitely as long as the treatments show positive results. We were so encouraged and relieved to hear this good news.

This may seem like a small step, and it actually is in light of all the cancer research that is going on, but this is a huge step for me. Maybe the Lord is not finished with me yet.

Et Cetera

Some friends and family have recently asked me: Barring a miracle from the Lord, this cancer is going to take your life. There are no cures. Then why fool with all these treatments and participate in the clinical trial?

Four things I considered in volunteering for the clinical trial:

1.     I prayed and felt that God was leading me and Cheryl to do this. Our bodies are the temple of God, I needed to check with the landlord before making a decision.

2.     The treatments would help with the pain in my face and head, and they have done so. They might thwart the rapid growth of the cancer. We will learn the results of the scans and MRI at my 4th infusion on February 25th.

3.     This is part of me wanting to show my children and grandchildren that dying is part of living. In dying, I want them to see Papa as being brave in fighting to live and facing death. I want my family to know that we celebrate births, birthdays, graduations, getting accepted into special educational opportunities, academic and athletic achievements, and special anniversaries. So we need to celebrate dying by talking about death and how it leads to walking into the arms of our Lord and Savior.

4.     I want my family to remember that with this clinical trial physicians may learn something that could help save someone’s life down the road.

Three grandkids have been in our home today, and I have not felt like playing games or cards or anything with them. I have not engaged with them because I do not want them to see me in a sick mood. To the point, I have felt lousy today. I have a nagging cough and congestion. I have not been hungry, but I must eat something. But nothing sounds good to me. My stomach feels upset, and I must keep taking my medications.

On days like this I usually push myself to make it through the day, but the only thing pushing me today is that I need to get this blog post finished and posted. I know that no one is dying to read what I will write, but I like to think that on days like this I am letting friends and family down if I don’t send something out.

Cheryl and I have been in self-imposed isolation for a few weeks--even from our family. We finally decided that we would rather risk getting sick from whatever virus or cold or flu that was going around than to be separated from family and friends. During the time before our isolation and since we lifted it a week ago, we have had friends who drove or flew to our home just for a couple hours visit. These visits have lifted my spirit, and I believe that they have also been healthy for our visitors.

That has been a benefit of having a terminal disease—friends want to come see me before I pass away. Also, I get to talk to my wife and children about memorial and burial services. I feel like I am attending my own funeral.

One thing that I encourage everyone to have regardless of their age is a death dossier. It should include information that your family will need to know about credit cards, properties owned, bank accounts, insurance policies, investments including retirement plans, social security information, email accounts, travel accounts and award programs and other accounts that have passwords, etc.

Treatment 3

Has anyone out there never tried to lose a few pounds? I have never been on a diet to lose weight. But I have been intentional about what kind of foods I digest.

During my clinical trial, my appetite has diminished significantly.  Cheryl has encouraged me to drink smoothies, and she has prepared some interesting ones. My favorite has these ingredients: a frozen banana, a big heaping spoon of peanut butter, some non-flavored protein powder, milk with lots of chocolate syrup, and add as an option two heaping soup spoons of malted milk powder. The “coup de grace” is a dip of either vanilla or chocolate ice cream. I also enjoy some healthier smoothies like strawberry, mixed fruit, and my second favorite one is mango.

I have only lost a few pounds. My medical team does not want me to lose any weight as they have mixed my chemo cocktail for the weight that I registered when I took my first treatment.

I had my third treatment last week and it went well. Cheryl and Allison accompanied me to this appointment. Our children decided that one of them would drive us on these trips to Atlanta. Letting one of them drive relieves a lot of tension for us. It’s also great to have friends who will step up to help. Since we had to go to Emory three times last week, we asked Mark, one of my pickleball buddies, to drive me to one of those appointments.

Although the actual infusion only takes 30 minutes, it takes a half day to complete the process. First, they take my vitals, followed by a conversation on any new pains or stomach or other digestive problems.

Med techs place an IV port in my arm and draw blood for a complete evaluation. After the results have been reviewed, the doctor gives the order to proceed to the Emory research pharmacy in Decatur.  The cocktail cannot be mixed up until the approved order is received. As the crow flies, Decatur is not too far from Emory Cancer Center, but with Atlanta traffic—Pshaw!! When the cocktail finally arrives in my room, two RNs come in to confirm the contents of the infusion bag.  One reads out a series of about 25 numbers on the bag while the other verifies the numbers on the computer.  Finally, after a wait of 2 ½ hours, the infusion begins.

After all the meds has dripped into my body, I begin a period of waiting to make sure that there is no immediate reaction to the drugs. After a nurse removes the tubes and about three feet of tape, I am ready to leave. Well, I did not measure the tape, but it sure felt like three feet of hair on my arm being removed from its follicles.

Questions that may be raised: Are you still playing pickleball? No. I am weak, and I walk only with a cane. Why is your mouth contorted? The doctors I have seen do not know why. I look like I have had a stroke. I have a white beard that helps to camouflage my crooked grin.

Big Week

You would think that getting a new computer would be a great experience. However, the joy of getting a new one to replace the 11-year-old one is over-shadowed by the difficulty of moving files to the new one. I get so disgusted with trying to perform this seemingly easy task. Where are the technologists that helped me with this before I retired? No one ever told me that I would not have a support department to help me!

Everything has been a hassle for the past week, and there is still a lot to be done in getting set up and working at 100%. In this post I have a request for you and then I will close with a brief story.

This week I have three appointments at Winship Cancer Institute at Emory Medical Center in downtown Atlanta. That means that we have to tackle the traffic on Tuesday for my third infusion, on Thursday for scans and an MRI, and on Friday for an echocardiogram. There are some other tests thrown in there, but you would think that they could do the echocardiogram on the same day as the scans. We have a good advocate working with us to coordinate these appointments, but even with her assistance we will still be making three trips.

Would you please pray for family and friends who drive us to these appointment? Cheryl says that retirement for her meant no more driving in Atlanta, so we are thankful for family and friends who chauffeur us to Emory Medical Center.

I fell two times in the last two weeks. One time was onto some cardboard boxes in the garage with no injuries, and the second time was in a parking lot. I bruised my hip and skinned my elbow and my hand, but nothing major for which I am thankful. I have been using a cane and that has helped with the dizziness and lack of balance. I have been having a lot of shortness of breath, and lack of appetite, but there is some good news from the first two infusions. I have reported this and I want to keep remembering this: no more of the major pain in the left side of my face. I have been able to reduce some of the pain medication that I have been taking.

In closing I would like to share a short story. When I was a boy, my granddaddy would take me for walks in the woods. He did not talk much, but as we walked, he would tell me some family history and sometimes he would give me some advice such as how to identify the species of trees.

One time he told me that when I grew up that I should spend the most money on two things—my bed and my shoes. He was waiting for me to ask “Why?” I did as I usually did and said, “Why, Granddaddy?” He replied that for every hour of the day I would be using one or the other!

I have practiced his advice throughout my adult years.

Keys

Can the grandkids reach the keys? That question has been raised in our home over the past 25 years. Now that Noa, the youngest grandchild, is four years old, we don’t have as much of a challenge of losing keys. We have a “keys bowl” and I am not 100% sure of this, but I don’t think that Noa knows about the key bowl. But she is still capable of knowing but not telling.

Now, when we have a special event with all our grandkids present, one of the older grandchildren will yell out, “Has anyone seen my keys?” It is quite normal for one of the two youngest grandkids, Noa and her six-year-old brother Pete to look under the cushion of a chair or sofa and present the keys. I can’t help but think that they do these type things because it draws attention to themselves. And there is a lot of “It’s just fun to trick my cousin.”

When I was a preschooler, I watched my dad as he carefully clipped his key ring on his belt. He was the general manager of a food vending company, and he had to carry a variety of keys. Most of these 12-15 keys were master keys for a particular vending machine company. I would go with my dad to “help him.” One of the best gifts I ever received was a key ring exactly like my dad’s. It was round and shiny and stayed clipped to my belt. When I grabbed a key and pulled it out and up to open a machine, the key had tension on it. When I let it go, it quickly returned to its proper position on the key ring.

Ever since getting my own key ring, I have had a keyring with my own keys. One of the most celebrated times in our lives was when we received keys either to a family car or even better when we got our own car or truck. The make and model of my first car may not have made the Consumer Report’s top ten vehicle list, but all the same it was my car, and I also proudly carried the keys to that car.

So, for the past 60 years, I have carried keys in one of my pockets. For those who do not know, I was diagnosed with Blepharospasm in 2021. Three months ago, my movement disorders neurologist told me that I could not drive any more. She also said that Cheryl would have to be the bad cop and enforce this decision. My doctor said this in such a nice, gentle way that I did not argue or even get mad.

Can you imagine never driving a vehicle again? Cheryl, our children, and our grandchildren have stepped up to the plate to drive me to all my medical appointments—which are numerous and are mostly at Emory in downtown Atlanta.

If you are wondering how it feels to give up your car keys, it stinks. But my mind was trumping my heart to think like that.

My life is bigger than the ability to drive. I thought about all the blind people who cannot drive. The amazing thing is I feel like I am blind with 20/20 vision. I have perfect vision with my glasses. I just cannot control when my eyes are going to blink and how long my blinks will keep my eyes closed.

I have always thought that if I could not drive, then I would feel like I was not in control of my life. But deep in my heart I know better. I gave my heart and my life to Jesus Christ long ago. God is in control of my life. He’s got this.

“For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD.  “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts” (Isiah 55:8-9, ESV). 

Report on my high level mucoepidermoid salivary gland cancer:

I have experienced reduced appetite, shortness of breath, extreme dry mouth, dizziness (I have fallen twice. First time at home with no damage. The second fall was three days ago in the Walmart parking lot with damage being very large strawberry on my elbow and bruises on my hip). Extreme fatigue--after never taking a nap during the daytime, I am now napping for 50-90 minutes every day.     

Next appointment is 4Feb25. That will be Infusion number 3. After that infusion, my medical team will take more scans and MRIs.

It is tempting to fall into the pity pool and feel sorry for myself. So far I have avoided this. But it would be so easy to feel sorry for myself for all my health challenges. But I choose the high road here—Joshua 1:9.

Round 3 part 9

Post first treatment

How do I explain my cancer to a grandchild? The easy answer to that is “Let their parents do it.” Granted parents certainly are ultimately responsible for handling questions like that, but there are occasions where the parents are not present when questions like that are asked. “Papa come play chase with us. Tag, you are it.” I want to play chase with them, but physically, right now, I cannot. “Papa come on. You are it.” “I am sorry, honey, but I can’t play right now.” “Why?” I have to break up their tag game to explain why I can’t run and chase my grandchildren.

I don’t remember exactly how I responded, but it was something like this: When you were just a baby, Papa had this same disease called cancer. God chose to heal me, so I got well. Now the same cancer has come back. It is much worse this time.

Many times you can look at someone and they don’t look sick. That is the way it is with Papa’s disease called cancer. In my body, there are these nasty bad cells that are attacking and destroying good cells. We go to the doctor’s office or the hospital to find ways to get rid of these bad cells.

That’s about the limit of what you get to say as everyone wants to get back to playing chase. Our grandchildren range in age from 24 to 4. You certainly don’t tell the 7-year-old the same thing as a 16-year-old.

It’s hard for the grandchildren to understand because I go through periods of looking and acting perfectly normal, but I may be feeling absolutely terrible. I must grit my teeth and move on because I want to set the bar on how to live while I am dying. This is important to me even while knowing that death will come sooner than later for me. I must accept what is and what the Lord intends for me and be honest about my condition to others and myself.

Having blepharospasm and salivary gland cancer at the same time presents an even larger challenge. The blepharospasm causes some facial dystonia which causes contortions and unusual movements that aggravate the cancer in my face and head. It is extremely difficult to do any productive work during these spasms. But I have to push on and work through the spasms to finish tasks.

Mouth sores and lesions on the left inside of my mouth cause a lot of pain, and often mask pain from the cancer—although I believe the issues inside my mouth are caused by the cancer even though they have been an issue for three months.  I only chew on my right side because I have bitten the left side so much that it makes it difficult to heal. These mouth sores have been a pain! I am sleeping mostly in the recliner in our bedroom because the pain from these lesions combined with the pains from the cancer make it difficult to get into any horizontal position where there is pressure on my face or head.

Since I had the first infusion 13 days ago, I have had less stabbing pain in my jaw and chin. No change in the shortness of breath. Feeling of unbalance and dizziness still bothering me. No nausea, yet.

The plan for me is a total of six infusions—one every three weeks during an 18-week trial.

Life is brief and I should not take my days for granted. All of us who have faced terminal cancer understand this more than others. I ought to do the things that will last today. I ought to pause and listen to others' stories. I should spend time with my wife, children, and grandchildren without being rushed or distracted. When God puts individuals into my life, I must listen to their stories.

As I was writing this blog posting, I could hear children playing outside. I looked out the window to see what crazy kids were out in this low 40s weather, and I saw four of my grandchildren playing with two neighbor’s kids. A couple of them had shed their coats. The Lord urged me to get out of my warm seat at my desk and join them in our front yards. All four of our grandkids greeted me with a hug. Soon after our hug, Will, their dad told them it was time to come inside. The neighbor’s kids’ mother had called and said it was time for them to come home. All four grandkids and I went for a cool-down walk, so I got to spend a little more time with them.

In the scope of eternity, this time with the kids was only a blink in our way of keeping track of time, but it was a valuable blink. I was able to spend some time this day with my grandkids.

“For you are a mist that appears for a little time and then vanishes.” (James ‪4:14).