Updates

• New Diagnosis, New treatment
• Insurance Challenges
• Facing Anxiety

Cheers and Fears 

One of my favorite shows in the 80’s was Cheers. Funny, sharp and endearing, you just wanted to go visit a place ‘where everybody knows your name’ just like one of the verses of the theme song.  I was reminded of the show when I noticed that there are now two places in my life where, when I walk in, I am welcomed by name by multiple people:  Decatur Presbyterian Church and Clearview Cancer Institute.  The first is a joy to be known by my church family.  The second, well; there is a kind of comfort to be known and well-tended to by the professionals at CCI. 

The receptionist recognizes me and starts my check-in as I am walking up as he greets me “Mr. Bailey”. My Oncologist will tease me in the hall for being a troublemaker.  The scheduling nurse and I have an ongoing Dad Joke marathon. My treatment nurse will often offer me a premium seat by the window knowing that I spend most of my day in the infusion center working remotely while I receive my treatment.  I know that I am blessed to have made the connections with a care team that communicates well and works together – not just CCI, but at Vanderbilt and with my wholistic oncologist as well.  All these people know me and have been working for the past two years to keep me alive, and I don’t feel like a number to them.  But at the same time, I would rather not know them at all.  I know them because I have cancer.  I would never have encountered them if it weren’t for this life-threatening illness.  I am glad to have them in my life, but the circumstances were not my choice.

And we are in a new stage now.  The good news is that from that the diagnosis from January (the three small masses in my liver and the metastasis in my rib and hip) have all resolved. Which was a great result considering how many areas of concern had developed.  However, in the last scan, two new small tumors have appeared in my liver.  While they are small, the big concern I have is they developed while I was in therapy.  That may mean that the current treatments are becoming less effective.   I have also reached a point where my care team decided that after a combined 18 months of aggressive chemotherapy, my body needs a break.  It was just getting very hard to handle that treatment regime.  So, we have discontinued chemo for now, and are just focusing on immunotherapy, which has a much lower side-effect burden.  Last week I had only an hour of treatment, down from 7 hours with chemo, and I only need to go in once every three weeks.  There was nausea and fatigue, but it only lasted a day, not five days with chemo.  That leaves the two new tumors to deal with, and we have an option for that.

There is a new treatment called Histotripsy which uses an ultrasonic pulse directed at a liver tumor, causing cavitation that breaks down the tumor tissue.  It’s a non-invasive way of destroying cancer tissue and has been shown to be very effective (90% + success). But there is a hitch.  While Histotripsy has been approved by the FDA and is not considered experimental, Blue Cross of Alabama considers it ‘investigative’ and does not cover it.  United Health in Alabama covers it.  Blue Cross of Tennessee covers it.  I have Blue Cross of Alabama.  We are gearing up anticipating a denial and getting ready for a fight through an appeal process.

This is frustrating on a number of levels. Histotripsy is not a new technology, but an evolution of an existing technology applied in a new way.  For decades, ultrasonic waves have been used to breakup kidney stones – Lithotripsy.  It’s effective and safe – I have had it done twice to crush kidney stones, and it’s worked.  Applying it to liver tumors is a natural and proven extension of the technology, even though it’s a radically different target and disease.  It very much seems like a better option than surgery – less risk of complications, faster recovery, less discomfort, shorter procedure, shorter anesthesia, reduced hospital stay. Honestly, it seems like a less expensive procedure as well, which I think would be to Blue Cross’s advantage. I don’t get the math on their side, and I am frustrated because it’s my body – and life – we are pressing through somebody’s spreadsheet.  If it was an experimental procedure with unproven outcomes, or low statistical samples, I would get it.  It’s been approved by the FDA since 2023 – it’s new, but over 800 patients were treated in 2024, and hundreds more already this year, all with almost immediate, measurable successful results.

So, here we go.  For the first time in two years of fighting liver cancer, we are facing a potential delay in treatment, or a second-choice treatment (Surgery), due to an insurance dispute that goes against a qualified medical recommendation by multiple physicians.  For the most part, I have been incredibly blessed with an excellent care team that I have come to trust through experience.  I have even had a very positive experience with Blue Cross with quick coverage determinations and good support and service.  I just hope that will continue.

Even if approved, we are going to face a challenge.  We have already expended our FSA long ago, and will be paying co-pays and fees out of pocket – and there are many with multiple scans and treatments ongoing.  Cost will continue to be an issue for us.

There is one other reality I am facing: emotional fatigue.  It’s been two years since my initial diagnosis, and I am tired.  Just really tired of the toll this is taking on my family, my children, my financial wellbeing, my mental health and spiritual strength.  Since hearing that I have two small tumors that have developed while in treatment, my anxiety has greatly increased. I had a pretty good ability to pray through fear and reach a moment of calm and peace, but that has become much harder now.  I still trust God, believe in Him and His plan – I don’t need to see it all, but walking forward in the dark with even more concerns now is simply harder.  I have seen God provide my daily bread of hope, comfort, and provision so many times since – I have more evidence of His gracious providence in the last two years than in the past 40 years.  But cancer weakens you, humbles you, hurts you, and keeps whispering to you how you have every reason to be afraid.

A couple of weeks ago, I was able to be at a Zach Williams concert.  One of his best songs is “Fear is a Liar” Here is the chorus:

Fear, he is a liar

He will take your breath

Stop you in your steps

Fear, he is a liar

He will rob your rest

Steal your happiness

Cast your fear in the fire

Cause fear, he is a liar

I have had that song on my playlist throughout this experience, and its powerful message is an important check in broken thinking.  Another quote that I have often thought of through this experience comes from one of my favorite novels: Dune by Frank Herbert.  Recited by a couple of the characters at key intense moments, it’s used as a mantra to gain focus.

“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.”

But the best and most empowering message comes from Living Word In Psalm 23:

The Lord is my shepherd; I shall not want.

He makes me lie down in green pastures.

He leads me beside still waters.

He restores my soul.

He leads me in paths of righteousness

    for his name’s sake.

Even though I walk through the valley of the shadow of death,

    I will fear no evil,

for you are with me;

    your rod and your staff,

    they comfort me.

You prepare a table before me

    in the presence of my enemies;

you anoint my head with oil;

    my cup overflows.

Surely goodness and mercy shall follow me

    all the days of my life,

and I shall dwell in the house of the Lord forever.

I would note a couple things here.  Unlike the thoughtful but self-help motivation of the Dune quote, in Psalm 23, the help and rest and blessing comes from God himself.  It’s not even the idea of having faith – faith is just the pipeline through which the living water of hope comes – but it comes from God.  Faith is not an end source of hope, but the connection to the true source of strength and encouragement, which is God himself.  When I am weak, tired, angry, lonely, and frightened, I can’t even find the strength to motivate myself to hope.  It’s then that I receive hope as a gift, I just need to open my hand to receive it.

It’s God who knows my name.  It’s God who is glad to see me, welcome me, give me a cool drink and is ready to hear all about my day, good or bad.  Or just sit with me in companionable silence. And in those times when I recognize his presence, it’s then that fear falls to the comfort and peace of God.

Note:  Mia took the picture of Mason this summer at a lake in Ohio, and it just seemed close to perfect.  

Exceeds Expectations

“Exceeds Expectations” Those were the first words out of Dr Miriovsky’s mouth when he walked in the room.  I needed a moment to take it in.  What did that mean? “It means there is no more detectable signs of cancer” Karly and I looked at each other stunned.  The three spots in my liver?  Resolved.  The fifth-right rib?  The left pelvis?  Both showed no sign of cancer tissue, only remaining sclerosis (Increased bone density).  “This is everything we wanted but were afraid to hope for.”  Monday was a good day.

So, what does this really mean? 

First, we are just enjoying the good news that treatment appears to be effective.  We once again get to praise God for His merciful hand and listening to so many of the prayers of family and friends.  Thank You! We are grateful for the wisdom of my care team and their coordinated effort.  I am blessed to have Karly and my kids being so supportive and encouraging even in the midst of their own fears. We have also been blessed by our church family in so many ways over the past nearly two years.  This is a good place for a marker in the timeline to show our gratitude.

Second, it’s easy to say that God showed up in a big way, but Karly and I want to be clear that He was already showing up each day in a thousand ways.  There have been so many times when we were walking in anxiety, God was holding us together.  We were expecting a different outcome – I don’t trust the signals my body is sending me.  Is that pain in my side indicating that the cancer is spreading, or dying?  I just could not tell, other than there was a pain in my side.  If the circumstances were different, the same God was working, and we are working to trust in his timing.

Third, we need to be real about what this means in context.  It appears that my body has accepted 3 months of Chemo- and Immunotherapy successfully.  While undetectable to a PET scan now, it does not mean that I am cancer free.  This is a remission, but too soon to determine whether partial or complete.  Because we had several months last year where cancer was undetectable, then it came back in 5 different places fully metastasized, we need to still be aggressive in treatment, and cautious when backing off.  Dr Miriovsky said that I may never be off maintenance immunotherapy.  The reoccurrence rate for Cholangiocarcinoma is still high.  There is a cost to every victory.  So we are planning to continue another 4 rounds of therapy over the next 3 months. We are also going to try and get my case before the Vanderbilt Tumor Board again to see what they recommend.

This week has been like one long exhale.  I didn’t even know I was holding my breath, but psychologically, that was what we were doing.  There was this tightening, shrinking feeling in my mind. Now, I am drawing sweet, deep breath into my mind and heart. Even though therapy will be continuing, I know it’s still working, and that makes it easier to push through it.

When peace like a river attendeth my way,
when sorrows like sea billows roll;
whatever my lot, thou hast taught me to say,
“It is well, it is well with my soul.”

The Call of Real Faith

Going back to treatment has been hard.  It was a hard day back in January to hear that the cancer had returned and spread.  Now after 3 months of renewed treatment, I go on Thursday morning for a new PET scan that will reveal what the next steps will be.

It’s lead me to think about how I have both struggled and grown in my faith over the last 2 years. I have been considering what is real faith; such a core tenet of the Christian paradigm, but often confused and elusive to even strong adherents. I think a real Christian faith Is wrapped up in the core of the greatest commandment:  Love the Lord God with all your heart, soul, mind and strength. Jesus calls this the greatest commandment, and it’s found in three places in the bible: Matthew 22:34–40, Mark 12:28–34, Luke 10:25–28.

Faith is more than an intellectual assessment or opinion, but it starts with a considered assessment of hopefully clear thinking.  From the heart, It’s more than a flash of emotion or momentary inspiration. There is something powerful when it’s connected with a genuine spiritual experience, and a Christian faith has durability and consistency as it’s true strength.

I was listening to an old Tim Keller sermon and had some great notes about how faith starts with intelligent questions.  Contrary to the common presumption that faith is just accepting an idea without evidence, actual faith in an investigation of an idea until you are satisfied that the evidence fits the reality that you need to act on.  Pastor Keller gave an example that was remarkably close to my actual experience last year. Soon after my initial diagnosis, I met my surgeon to discuss the potential of removing the tumor from my liver.  I asked a bunch of questions, and he assured me of his qualifications to do the work, that he had done this type of surgery before, he could do multiple approaches, etcetera.  I became convinced that this was the right approach and scheduled a day for the procedure.  I had faith that he could do what he claimed he could do.  But the day came, and I had to actually show up and walk into pre-op and start getting ready.  The nurse started describing everything she was doing, and my anxiety just went right through the roof, and I passed out.  I woke up 30 seconds later and really wanted to just go home – my faith was wavering based on what I was seeing.  This is the opposite of what many people expect from faith – Seeing something is supposed to build your faith, right?  I had to stop and think – to consider – to renew my thoughts about why I was there.  The surgery plan was still the right plan, despite my doubts and anxiety.  My faith became real when I laid down and let them put the mask on me and started to count backwards. Real faith has a foundation in intelligent pursuit, and my mind had to oversee my circumstances.  Faith needs to be struggled with and investigated.  It does not need to be a complete understanding – It just needs to make more sense than any other set of proposed conclusions.

Faith is connected to the soul. There is a mysterious connection to the presence of the Holy Spirit in generating faith.  As a Christian, I believe in the presence of the indwelling of the spirit of God in every true believer.  It’s not like being plugged in to a power line – It’s not an impersonal force.  I think of my home when I was a kid and a relative would come and stay for the weekend.  The house would be cleaned up, a menu of good food prepared.  The life of the home would be more vibrant with loud, with sparking conversations and an occasional board game.  The house had a fullness to it, a rounded presence of trusted family, stories, food and memories. It’s out of this type of fullness that faith can spring up out of grace and peace, not fearful or reactionary, but grounded and complete.  We can love God with our soul when we recognize that faith is nurtured by God himself reaching into us with his goodness and lifting us, warming us with his presence, allowing our thoughts to be clear and strong.

Faith also needs to come from the heart.  Now the ancient understanding of the heart was where the center of the will was located.  We tend to think of heart, in metaphor, as where our emotions and passions originate from, but an ancient reader would understand that Jesus was saying that to love God with your heart was to choose to act on your love. You willfully choose an action based on what the mind has qualified, and the soul has enabled.  It is raising your hand to be counted among the fellowship.  It’s actually doing something for that struggling friend.  It’s the show-me part of saying you’re a believer. When you engage in devotional activities, with a church family, serving in a compassionate manner, or any of a thousand other ways we can take the inner life of faith and find expression in the physical world. This is faith that comes from the heart and loves God.

The strength part of the greatest commandment is where it’s enduring and vibrant.  You’re not just acting on your faith, you’re acting on it consistently and creatively, improving the way you walk.  It’s not about being perfect, but it is about a consistent trajectory of striving, a willingness to set a direction and keep going.

Real faith is a thoughtful, spiritually full, willful, and enduring expression of loving God, one who first loved us through promises and patience, through Christ, and now day by day as He provides for us.

That leads to my simple prayer request.  Yesterday was not a chemo treatment day, but I do have a PET scan scheduled for Thursday.  It’s an important one that comes after 3 months of renewed treatment, so it will determine how effective the chemotherapy and immunotherapy has been – or not.  If you ask me how I feel, I can’t give you a clear answer.  I feel the effects from the treatment, and I feel my ribs occasionally twinge, but is that cancer spreading or dying, I can’t tell. Please pray for healing and a positive mental health as we feel the anxiety of the coming test and results next Monday.

Whatever the results of the scan – and the next scan after that – I have faith – real faith – that a good God will be leading every step.

What Comes First

“But seek first the kingdom of God and his righteousness, and all these things will be added to you.” This has been buzzing in the back of my head for the last week.  It’s from Matthew 6, from the middle of the Sermon on the Mount, right after the Lord’s prayer.  The next verse starts with “Therefore, do not be anxious about tomorrow…”  It’s part of a compelling passage about anxiety and how it can control your life, and Jesus utters this phrase as the solution to managing our anxious lives.

First, the cancer news.  I am back in treatment and it’s an old pattern of Tuesdays at the infusion center for most of the day. Then hanging in there Wednesday and Thursday to start to feel better on Friday and into the weekend.  Stay hydrated.  Get some extra rest.  It’s not fun, but it is a familiar track to race on.

The two main updates are that I have had a new biopsy that confirmed my diagnosis of Cholangiocarcinoma, and I met with a new doctor at the Sara Cannon Institute (SCI) in Nashville.  While everyone agrees that the current treatment is the best course for now, SCI may be able to help find trial drugs that might help if the current approach fails.  It’s always good to have a plan B. or Plan C.  The biopsy I had will provide current tissue to test and look for markers that can confirm my eligibility for new treatments.

Please pray that my current treatment is effective.  I am also experiencing a little PTSD-like anxiety reaction with needles and injections lately.  I still have a port that works for injecting, but has become a little difficult when drawing for lab tests.  Last week was fine, but I have passed out several times recently when doing basic draws for labs and scans.  It’s challenging to try and ‘think your way through’ the moment, but just can’t quite keep from blanking out for 30 seconds.  It’s nothing serious but just embarrassing.

On the happier side of family life, Ella, Mia and Mason were on the robotics team that won the state championship and qualified to go to the World Championships in Houston.  We are still working on getting together the plans to see if we can make it for the trip.

Otherwise, life has a normal pattern while living under a rather abnormal set of circumstances.  Mason and Colin recently spent time with their Trail Life friends playing Airsoft wars.  Mia had a couple of friends over to spend the night, and Ella when out with a friend to go dress shopping and came home with half a dozen books.  That’s our girl! I got to spend a little time with Colin and Brenden tossing the ball and batting at the park this last weekend.  Ella and Mia spent the last week at an event called TeenPact in Montgomery where they practiced the legislative process and meet state and national leaders.

Seeking first God’s Kingdom is hard when you have your own daily responsibilities.  How do I give attention to the kingdom business when I have my own affairs to manage?  Yet, the truth I experience is that when I put the perspective and priorities of Christ’s kingdom first: Loving God and loving my neighbor, I find that I have less stress and a better perspective.  I can see how God has provided for me and my family above and beyond my own effort. Jesus connected the idea of actively engaging in establishing his kingdom with prayer and communication with God with the command to not be anxious. I am still contemplating how all this interacts and relates, but It’s clear there is a real progression here that is worth considering. 

Notes

• Cancer has returned in multiple locations
• Returning to Chemo and Immuno
• Multiple locations bad, small size good
• Fear is a chain to be broken: It won’t rust

 

Many Roads 

…Were meant to bring me here all along

Could it be that the many roads
I took to get here
Were just for you to tell that story
And for me to hear that song
And my many hopes
And my many fears
Were meant to bring me here all along

     ~ Andrew Peterson “Many Roads”

After a season of remission, I am humbled to announce that my cancer has returned.  With no symptoms, I went in for my quarterly scan in January hopeful that it would be clear. Unfortunately, that was not the case.  The CT detected “areas of concern” in several spots.  We followed up with a PET scan which revealed in more detail that the cancer had returned to multiple locations. It was hard news after several months of feeling confident that we had removed all visible signs of cancer.

 So today, I am back in the chair with an IV in my port, looking for the snack cart. We are picking up with the same treatment that was previously so effective: two types of chemotherapy as well as immunotherapy. I am honestly looking forward to tackling this again -It means I am fighting back.  Don’t get me wrong, it’s not especially fun, but it was effective before, so I just want to kill some cancer cells.  Beyond the immediate treatment, I will be looking for a biopsy again sometime in the next couple weeks – we want to see if it’s the same type of cancer, or if its profile has changed and we need to adapt treatments.  I am also going to get connected with a research group to get on the radar for any potentially relevant medical trials.

There are a few good hooks to hang hope on: While we have multiple locations to worry about, it’s relatively early detection.  All the areas are currently small – measured in millimeters, not centimeters.  I am pretty healthy, working and exercising, holding my weight, and don’t really feel symptoms yet. We have a treatment that we know was effective previously. These are all good, real, and hopeful indictors.

But I have no illusions: This is going to be hard.  We have stepped into a new level.  The next three months will be critical.

I will be posting more often again.  So many people have prayed, sent supportive messages, and contributed to our family in so many meaningful ways.  Thank you.  I could not have made it this far without the love and support of family and friends.  Please continue to pray for our family.  I don’t get to do cancer on my own – I am forced to drag my wife and kids on this journey that we didn’t choose.  But there is real blessing in a cancer diagnosis: It reveals the hidden love of your community, your family, and your church.

I am not angry at God.  I was expecting to feel that, but it hasn’t shown up yet.  I am sure it will.  I have been sad and framed it with lament.  I have been afraid and expressed that to God in my prayers.  I am more broken when I look at my wife and children.  I am going to wrestle with that.

I have experienced many sovereignly timed occurrences over the past year and a half, many more than I have catalogued here. A couple weeks ago, I was contemplating a lesson, and I had a reoccurring thought that has stuck with me: Chains of fear don’t rust.  They must be broken, the links struck and worked loose, bent and cracked until they each fall away using the tools of faith, hope and love. It’s hard, thoughtful and spiritual labor.  

Please pray for me.  Pray for my family, my wife and my children. Pray that the many roads to this moment result in a healing of body, mind, heart and soul, and that we find our good story to tell, and a song to sing.  God is good – Even when He says no or not yet.  I am just trying to step up, kneel down, and honor God as I ask for my daily bread each day.

The Year We Hung On

It’s been one year since we discovered I had a Cancerous tumor the size of a peach in my liver.  I had six months of chemotherapy.  Nine hours of surgery in March followed by a 2^nd round of chemo/immunotherapy. Last week there was a new genetic profile blood test and CT scan.

The news was good – no sign of cancer in my blood, and the CT shows continued recovery from the surgery and no areas of concern.  I am done with chemotherapy for now; I will only continue another three months of immunotherapy according to plan.  Just a one-hour infusion once every three weeks, then we do another scan in October to see the next step. We are very grateful for the healing God is continuing to provide, the wisdom of my medical team, and the support and prayers of family and friends.

This year has been one where we have been hanging on – holding on to each other, to hope, and to God.  We have had so many ups and downs.  Truly, it’s been the hardest year of my life in many ways. This year of facing cancer, trying to love and lead my family through the uncertainty and fear, and honestly not always doing it well, has left us all hanging on.

While we may have felt like we were just barely hanging on, God was holding us securely in his hands.  If you take that as an objective truth, the subjective feelings of fear have bulwark of hope to crash into. Every step of the past year was taken according to the plan of an all-knowing, merciful and loving father.  Peace is not based on an understanding of our circumstances, but by faith in the character of God.  The scriptures are really a thousand-year story of God laying out His character against the ever-changing circumstances of a family, turned into a tribe, turned into a nation, and finally a way of salvation that transformed kingdoms and empires. My single year of struggle for my life is a small matter indeed when weighed against the ten thousand years of God stringing threads of his will through all of human civilization.  We feel like we hang on by a thread, but He holds all things completely and comfortably.

We recently were able to take out our trailer and go camping for the first time in over a year.  We ended up at a place called Cloudland Canyon in Georgia.  It’s a beautiful park, with one of the nicest campgrounds I have been to.  It’s part of the long plateau of Lookout Mountain, and it’s stretched above Chattanooga and the Chickamauga Civil War battlefield.  The canyons there were lush and green, and there is a 600-step staircase leading down the canyon to a rushing creek and waterfall.  Tucked down along the rim of the canyon wall, near the waterfall, where my boys were wading in the cool waters and skipping rocks, Brenden reached down and picked out a little wedge of broken stone.  He looked at it closely, and realized he found something special and brought it to me.  I looked down at the sliver of rock in his small hand and realized he had found an arrowhead.  I inspected it closely to be sure – it had the clear triangular shape, the tap-sharpened edges, and the notches to hold the ties onto an arrow.  Brenden was thrilled with his find.  I wondered at the timing and placement of this little treasure.  I am sure that tens of thousands of campers and hikers had been in that little wading pool beneath the splashing waterfall and tramped all around that little piece of history.  It may have been laying there for hundreds of years, season after season, until my boy reached down to pick it up, and had the insight to recognize what he had grasped.

For the Christian, we are all artifacts traveling in time.  We may feel stuck or lost, and it may get cold and dark, season after season.  But sooner or later, God reaches down and picks us up, and we find our value in his hand.

a sWEET sUMMER

• Anticipation is a Form of Faith
• Look up to Look Forward
• A Test Returns Good news
• We Say Thank You to Partners

The Empire Summer

What we anticipate points to our faith

In the late spring of 1980 – a good 44 years ago – I was itching with anticipation.  I was nine years old and the end of a long school year was coming. Longer days of sunlight and the heat was already coming on in south Florida.  I was impatient with the last weeks of school, longing for the freedom of summer break.  I just wanted the freedom. The release from homework and school.  I had dreams of running loose, riding my bike and racing through the neighborhood.  There was also a special movie coming out: “The Empire Strikes Back”.

Now, I had seen Star Wars back in 1977 when I was 6 and I had been captivated ever since.  It’s hard to imagine in this current world that there had only been one Star Wars movie, only 1 Star Trek movie, only a single Indiana Jones movie … there were no such things as ‘franchises’ with hours and hours of streaming content.  There were no books – Star Wars had never been on broadcast TV, and there were no video games.  It was just the movie, and you needed to see it in a movie theater.  That’s it.  Oh, except for the record,  The Story of Star Wars record; which I had played endlessly under a blanket fort in my room.

To say I was excited to see the movie was an understatement.  The anticipation was real.

For example: I was not a particularly good student, and I had been told that summer school would be required.  At one point my mom said that if I didn’t buckle down and do well, I would not be allowed to see The Empire Strikes Back.  This threat was an emotional nuclear bomb – I immediately burst into uncontrollable sobs for 45 minutes. In later years, we would laugh about it, but at the moment, I was devastated by the mere threat.

While that movie was a specific event for me, we all can point to many things we have sweetly anticipated over the years.  The childish energy of looking forward to an adventure movie gives way to romantic urge of a first kiss, the open door of graduation, or the deep nervous joy of getting married.  Anticipation is a real branch of Joy, rooted in a hoped-for event with have faith in. 

As a Christian, we have the hope of an ending that is actually a beginning, and radical promise that we stand on and look forward to.  The final experience of moving into Eternal life.  It’s a bold, big promise that we often tuck over the horizon and don’t consider on a daily basis, even if the sky is lit above by that coming dawn.  We keep our heads down on the worries we have, keeping our eyes on each step of our daily tasks, rarely looking up at the colorful sky filled with God’s hope and presence. 

We should be waking up anticipating that God not only has a future secured for us, but a present where He is our companion, guide, defender, and provider.  He walks beside us with an abiding presence that offers comfort.  He offers direction for our tasks and priorities that is balanced and wise.  He is willing to protect our heart and mind from accusations and condemnation.  And He actively provides for our lives through his providential work.  These are all reminders I have encountered over the past few months.

Last week I got good news on a test – It showed no signs of cancer in my blood.  This new test was a new baseline to measure early signs of a re-occurrence, and it did not change the fact that I am still in chemo- and immunotherapy, but there was a wave of emotion to wash over me.  It was anticipation.  Hope that I can be done with therapy soon.  Joy that I can move on away from treatment.  Hope that the dark side of anticipation – dread – might recoil from the light of God’s mercy.

The road through the night is still long, but I hope the path is now lit by a coming dawn.

On the other side of anticipation is gratitude, and I have much to be grateful for.  Even as we travel the latter road through treatment, we have been blessed by so many to help us in fighting the financial battle.  This front in our struggle has been greatly aided by so many allies that have come to carry a little of the burden, and so do a great work all together.  It has been an incredibly humbling experience to have to raise your hand and ask for that help, but we have seen so many people offer in their generosity.  Words are so inadequate, but we offer them anyway.  Simply Thank You.  We still have a way to go, but God has been good through his people.

So, go enjoy a summer drive with the windows down and catch the scents of the road.  And wonder what amazing thing God has around the corner for you.  I testify that God is rich is mercy and is willing to do good things for you.  As long is there is breath is your lungs, let the light of the coming dawn color your world with anticipation.

• Life is often a Mess
• Not having it together is OK
• Good people will show up
• Keep looking upward and outward

Karly and I were having an honest discussion a couple of days ago.  We’re kinda a mess, yet God is working through that.

This conversation thread started when Karly was scrolling through Facebook.  We all tend to put our best foot forward online.  Happy pictures with the kids, great vacation spots, and happy celebrations.  That’s the kind of stuff we like to post and get affirming thumbs up and hug emojis.  Maybe it’s a hot take on a political or social issue, or just a funny cat video.

I think it’s sometimes discouraging to see happy people in our lives always doing well.  We unintendedly create feelings of envy or distance when we don’t intend to.  I have been guilty of this – all the pictures on my first draft of BaileyLife have been happy and charming. But this is not the reality of our daily life.  So I want to be a little more honest.

We went to a local festival this last Friday and had a fun time with free food and a good band, and some Japanese themed entertainment.  But when we were heading out, we got stuck in the mud.  All the fun started to evaporate into frustration.  It took and hour to get some help to pull us out – and then the electronic parking brake would not disengage.  It took another 45 minutes to figure that one out.  All the while, dozens of people offered to help.  Three police officers gave over an hour of their time to help us figure it out.  There was hidden truths to be seen.

The dishes aren’t always done: the kids don’t do the chore chart every day without tons of vocal reminders.  Laundry piles up, and the dog peed on it.  The kids fight and take offense at jokes that turn into arguments.  There are homeschool lesson problems to figure out, reports to do, projects to complete.  As a husband, I am not the best communicator; I get a plan in my head, and I don’t tell Karly my thoughts.  I miss getting everything I planned to do done, then don’t communicate the changes.

Just trying to get this post together was a challenge.  I started, then stopped.  Tried again when I was sitting in bed, but then fell asleep.  Sometimes, we just run out of steam, even with the best intentions. 

Then there is this little thing of cancer casting a shadow over the family.  There have been amazing answers to prayers, and we praise God for them to be sure.  But I am also back in chemo.  I don’t feel good for a couple of days afterword’s – it’s hard to focus, my body is still adjusting to not having a gall bladder so I have more nausea.  so I have to keep up with my work and not always be great about helping with homeschool.  Liver cancer has a high recurrence rate – going back into treatment was not an option.  I must do the right thing for Karly and my kids, so if I need to endure a few more months of chemo, it’s not a question.

And there is a reality that finances have become an issue.  As many of you have likely seen, Karly’s sister Kelly started a Go Fund Me to help raise funds to cover the bills.  You can read more about it HERE, but the basics are that Insurance is still covering most things, but not everything.  We have run out of the HSA funds quickly this year, so all co-pays are out of pocket for scans, treatments, and appointments.  I have medications and supplements recommended by doctors, but not covered by insurance.  We have other household costs that have gone up substantially.  My raise this year barely covered the increased cost of home escrow (taxes and insurance), let alone the cost of groceries for 7.  The van has a cracked windshield that needs repair… it feels endless, and being honest about it in detail feels embarrassing and invasive and feels like we are inviting judgment.

Yet we are called to share our needs with our community of friends and family, especially in Christian fellowship.  And we have seen an outpouring of generosity that is a profound blessing and life-changing paradigm shift.  While this has been one of the most difficult things we have had to do – harder than cancer in some ways – we are working to see how profoundly kind people are from a lifetime of relationships old and new. It’s a remarkable tapestry of generosity. 

• To those who have sent encouragement – Thank You!
• To those who pray for us – Thank You!
• To those who have given – Thanks You!

My goal is to reach through this season and into what I believe is a new hopeful year with real and substantial and beautiful life beyond cancer by God’s hand of mercy.  I have seen my children cry for me and grow in faith and maturity this year, and I am incredibly grateful for it.  Cancer has taught me about honesty that was the hardest lesson I have ever learned, and I am working out all the implications still.

Finally, we try to not navel gaze.  We keep looking to help others.  We are very glad to have encountered and encouraged others on their cancer journey.  I may have stepped down from the Troopmaster position, but I enjoy coaching my own boys and being a Trail Guide for the other patrols.  Karly still finds ways to bring meals to others and encourage her friends.  We want to keep reaching out and up.  Send us a message.  It’s our joy to pray for you. For all our messy lives, there is a blessing to be found with humble prayers.

Psalm 103

Bless the LORD, O my soul,

and all that is within me,

bless his holy name!

² Bless the LORD, O my soul,

And forget not all his benefits,

³ who forgives all your iniquity,

Who heals all your diseases,

⁴ who redeems your life from the pit,

who crowns you with steadfast love and mercy,

⁵ who satisfies you with good

so that your youth is renewed like the eagle’s.





Overview

• 9 hours of surgery went well
• No clear consensus  on next treatment
• I have an amazing family
• Keep Praying!

Spring in the SOuth

A SUBHEADING

I have lived in many parts of the United States – Florida, Minnesota, Illinois, California, and Alabama. I love falls in Minnesota – the turning of the leaves and the crisp October mornings. Falls in California as well with the coming of the Santa Anna winds and some clouds after 6 months of endless blue skies. But in Alabama, I like the springs best. The warm weather before getting too hot, sitting on the porch before the mosquitos show up, and the wonderous flowering of the dogwoods and other trees that turn every neighborhood into a colorful parade of surprising color. It’s especially appreciated this year.

Five weeks ago I underwent 9 hours of surgery to remove what was left of the main tumor mass: I lost about 20% of my liver, my gall bladder, and ten lymph nodes. The nine hours was longer than expected, but it was a fully robotic procedure. I came out with eleven small incisions across my torso, but it was far less invasive than a fully open procedure. There was significant inflammation around the cancer tissue, but that just confirmed the immunotherapy had been working.

While I had the surgery on Friday, I was able to go home on Sunday, after only 2 nights in the hospital. I started going for walks in the park near our house on Tuesday. I have continued to get better and stronger over the past few weeks and have returned to work, but I am still not my normal self. I just don’t have the energy at the end of the day, and my digestion is a bit off, likely due to the loss of my gall bladder, but I am on the recovery road.

While I have spoken to several doctors who have called my treatment and surgery recovery remarkable, I can only give credit to God for his hand of mercy. I am not an ambitiously heathy eater or disciplined exerciser, nor do I feel like a ‘cancer warrior’ committed to battling this dreaded disease. I am just man trying to show up every day, take his medicine, eat the right stuff, go for a good walk, and let God do the healing. He has used my doctors and surgeons to apply wise counsel and effective treatments, but I humbly give God the credit for the arrangement of the circumstances. I have learned new dimensions to understanding God’s providential and sustaining hand, as well as the effect of the support of prayer.

Finally, I need to call out my family, and especially Karly. My kids have consistently been encouraging and loving, kind and thoughtful even as they have had to experience the fear of the unknown while still working on being a kid, each at their own stage.  I am so proud of each of them.

Karly has been extraordinary. This has been so hard on her to watch my struggles, offer encouraging words when she has been feeling the fear.  She had to sit in the waiting room for those nine hours wondering and worrying, praying, and facing the wall of fear. She has been the one to keep me going with healthy food, tea, supplements, and prayers. Every day for months and months. She has kept the family moving and learning and growing with a fierce determination that put herself last. I can’t help but feel incredibly blessed to have her in my life.  I am not worthy of the love she has shown me, but I want to be. I want to love this exceptional woman that God put in my life. And I want to do it for many years to come.

So, what’s next?  The pathology report was encouraging – Everything was cleanly removed, so it does not look like any of the tumor was left.  However, It was stage III advanced cancer that had reached the lymph nodes, a virtual highway to the rest of the body.  So far, eight different doctors and oncologists have not reached a consensus, but some kind of follow-up treatment is almost certain.  I expect another 3-6 months of immunotherapy, and maybe some reduced chemotherapy treatment.  We should have a plan by the end of the week.

Spring is a time of renewal, when the hand of God puts on display the beauty and wonder of life that is thriving.  We are trying to walk in that spirit of thriving each day.  We are incredibly grateful for all the prayers and encouragement we have received.  We both feel that it was the prayers that have carried us through the last 9 months – and we hope for whatever the next few months hold, we can continue to hold close to God and all his provision.