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 2nd 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!

Bless the LORD, O my soul,

And forget not all his benefits,

who forgives all your iniquity,

Who heals all your diseases,

who redeems your life from the pit,

who crowns you with steadfast love and mercy,

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.

 

Whoever dwells in the shelter of the Most High
    will rest in the shadow of the Almighty.
I will say of the Lord, “He is my refuge and my fortress,
    my God, in whom I trust.” – Psalm 91

Beware the Ides of March!  March 15th has come, and unlike Ceaser, I hope to walk out of my encounter with a knife in healing.  My encounter is knowing, and hopeful, if not easy.

Friday, I will undergo surgery to remove cancer in my liver and a lymph node.  Hopefully it will be all robotic, but it could end up being more intense and an open surgery depending on what the doctor actually encounters.  I am asking for prayer for myself, my wife and my children.

Our perspective in the world is sometimes only focused on the threats around us.  At one point in the past year, one cell in my body divided wrong and kept going.  My immune system missed it.  Nevermind that millions of other cells kept functioning correctly.  This little cluster got out of hand.  We forget the daily grace that abounds all around us.  We may have 364 days in a year that are warm sun or nurturing rain, but only one when a tornado shows up.  I am not trying to minimize tragedy or challenge.  Really, my Friday is going to be rough.  But I don’t want to lose perspective that there are a lot of beautiful days in this life, and there is a common, vast amount of grace in this world.

Please pray for us.  My paradigm of faith sees the sovereignty of God at work.  I have prayed for others in my life, but over the past few months, I have newly experienced the emotional and spiritual compassion of faithful people praying for me, and it has changed me.  If God is merciful, of which I am hopefully confident, I have a new trajectory for my life.  One way or another, I am going to have a deeper and richer experience after tomorrow.

We will keep you updated on the results.  Thank you for your prayers during this real challenge.  There is fear in this, but I hold there is a God working mercy – undeserved – but mercy no less.

 

  • 6 Months of Treatment Completed
  • Latest Image Results are ‘Remarkable’
  • Surgery Date Set
  • God is Still Good

We have passed a milestone, and have a new direction, and it comes with some good news, but confirmed one big challenge. 


I have now completed 6 months of chemo- and immunotherapy. It was a long process, and was becoming more and more difficult, but we did it.  So, last week on February 15, we spent the day at Vanderbilt having scans, labs and meeting with the surgeon.  The scan results were very positive.  Compared to the original set of images from last September, the liver tumor (and affected lymph node tumor) has reduced over 60%. He used the term ‘remarkable’ for the results.  I feel remarkably blessed.

With that kind of success, we were able to have an informed discussion about surgery. I am a little leading edge:  The immunotherapy that I have been receiving is a very new treatment for my type of cancer, and it creates two additional challenges. First, it’s inflammatory to the tumor area.  This is why I have been feeling discomfort in my side even as the tumor has been shrinking – it’s a good thing, because it means that my immune system is responding and fighting the cancer.  But the inflammation of the area makes the surgery a little more difficult.  It also has another effect: treatment makes the cancer tissue ‘sticky’, making to more challenging to remove.  (I wanted to suggest spraying my liver with Goo-Be-Gone and rubbing it out, but that felt snarky)

Despite the challenges, my surgeon was still very confident that he could be successful removing the last of the cancer.  It’s going to cost me 15-20% of my liver, my gall bladder, and a lymph node deep inside.  He was also confident that he could do the liver resection and gall bladder removal as a robotic/laparoscopic procedure, which would reduce my recovery time.  The challenge is the lymph node.  It’s deep inside my trunk and surrounded by some core arteries and veins.  He is going to try to do it robotically but will switch to an open surgery approach if necessary to make sure to get all the cancer tissue.  It’s a call he will have to make during the surgery itself depending on what he sees.  All that considered, we think it’s the right approach with the right surgeon. 

We scheduled surgery for Friday, March 15.

So now the preparation begins for that last mountain – God willing it’s the last mountain on this journey.  I will be honest – I am not excited by the prospect of 6 hours of major surgery. I am haunted by the surgery that my own father went through when I was 13.  That was far more invasive and challenging, and he recovered, but I can’t deny the daunting aspects of this solution.  I am on board, and this is a sound decision I am confident in, but it’s not emotionally easy.

I know that it’s not just a challenge for me.  This is hard for Karly and the kids as well.  There are plans to make and preparations.  I am glad to be done with chemo, and I am increasing my exercise for the next couple of weeks to build up my strength.  I am making time to spend with the kids and Karly.  I am trying to focus on the outcome, not just the challenge.

Did you know that every time your heart beats, 30% of that flow goes to your liver?  Did you know the liver is one of the few organs that can actually grow back?  I could have 75% of my liver removed before they would start to be concerned about organ failure.  It’s a remarkable organ within a remarkable system.  The interconnectedness, interdependency, and functionality of the human body is miraculous to me.  What is conscience in the brain?  How is cellular mitosis regulated?  It’s all a wonder, and we tend to take it for granted until something goes wrong.  Even when cancer invades, there are billions of other cells still working right. 

I see the hand of a creator and sustainer at work.  I see that designer’s hand in the endless stars above, moving among the uncounted cells of my own body, and His fingerprints further below in the mysterious quantum mechanics of the smallest particles. We are suspended in this life between the astonishing immensity of the cosmos, the surrounding complexity of our own existence, and the mysterious reality of the subatomic. Though a paradigm of faith I can see an order and a balance to existence, and even further, I see purpose.  It’s humbling.  It’s encouraging.  It’s even glorious.  That little pain in my side has reminded me that hurting can be part of the healing process, and that mercy is still something that God expreses.
Please keep praying – there are still mountains to climb and valleys to stumble through.  As we move closer to the next big step on March 15, I’ll keep everyone updated.

Welcome to a New Year.  For the first time is seven years, we had a Alabama Christmas.  We have normally traveled back to Minnesota for the holidays, but this year we needed to be closer to home due to my treatment schedule.  We had a great Thanksgiving with family in town, but Christmas morning was just the Bailey seven. We had a tasty breakfast, opened presents, then just had a lovely day being together as a family. 

First, some updates: I am nearing the end of my 6 months of chemotherapy: February 6th is my last scheduled treatment. We now have new appointments on the board: 2/13 is a CT scan and 2/15 is my next consultation with the surgeon at Vanderbilt.  There are a lot of branching possibilities depending on the scan and tests, but the middle of the road is to expect some kind of surgery 3-4 weeks after my last Chemo treatment.  Maybe.  Unfortunately, we just don’t get to see past the next set of tests to see what the future has in store.   

My treatments have become increasingly challenging.  The fatigue is real and persistent.  I spend a full Tuesday at Clearview Cancer Institute getting my infusions, and the fatigue builds Wednesday and Thursday and peaks on Fridays.  Then over the weekend, I start to get a little more energy.  It’s challenging to keep clear-minded as well.  Karly and the kids all dance to this rhythm, giving me space, encouragement and patience as I work through the process. It’s a new routine, but it’s never normal. 

We have noted a few interesting things about my particular brand of cancer and treatment. For one, I have discovered my own form of cancer-induced male PMS!  I tend to get a little emotional and ‘dramatic’ on my down days. My naturally emotive self really comes out when I am tired and feeling blue.  Karly is both patient and amused at my displays of sensitive manhood. 

There are a few common questions that I can answer.  I have not lost my hair, (Well, at least not any more.  It was thin to begin with.)  I am not supposed to hug small children and pets the first couple of days after a treatment, since I am RADIOACTIVE MAN! (no super-powers yet.) I had a port installed in my chest to be able to take chemo, So I consider myself fully a cyborg now. (I am Locutus of Borg…).   

We have this weird mix of the serious and the absurd.  The shadow of cancer falls over everything.  How do we plan for summer trips? How will I feel this weekend? What do I step back from?  We have been told many times that it’s OK to step back and say no to taking on things. Take time for yourself.  And there is a certain reality where we have changed focus.  I stepped down from being Troopmaster in Trail Life.  But there is also reasons not to give in to a fully self-focused life, even when the struggles are real. 

I look at it this way.  I am glad that Paul didn’t say “I am stuck here in prison, chained to this guard.  Things look bleak.  I should really focus on myself and my situation – The Philippians will be able to take care of themselves for awhile while I practice some self-care.”  Instead, he wrote: “Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”  When you remember the context of where and when Paul was writing, his encouragement is remarkable. 

It’s easy, and even expected that we should curl up and turn inward when hard times come.  I have done some of that.  But it’s also isolating.  Keeping a compassionate eye toward others is a way to keep your own balance.  I think as I roll into the early weeks of a new year, I am less concerned about a personal new resolution or some trendy form of self-improvement, and I am more likely to lean over and offer a hand to someone else. I’m doing ok, God is gracious and has a plan I trust, even if I don’t know it.

How are you? 

 

As we move through the end-of-year holidays from Thanksgiving to Christmas, I need to circle back and provide an update.

First, we are still in the race.  While we were very encouraged to hear that the tumor has been reduced after three months of therapy, the team has decided to keep up the full regimen for the full 6 months. Basically, don’t take your foot off the throttle if it’s working.  The downside is that I never get quite a chance to fully recover, so the fatigue and side effects are somewhat cumulative.  Each time is taking a little more time to bounce back, a little longer in the fog.  But the reality is this is a marathon, and I am in it to win it, so by God’s grace, I’ll keep running.  The new milestone is February 6 – A full six months of therapy. Then a new CT Scan and likely a liver resection surgery.

I am thankful for cancer.  I have been dancing around that statement for sometime, but I think I can finally state it honestly.

It’s going to take some explanation, right?  How can I possibly be grateful a life-threatening illness whose treatment is taking poison just enough to kill the cancer but not quite kill you?  What about the fear it’s introduced to my wife, my kids, and myself? Being confronted with Cancer with a capital C means you are going to have to face your world in a hard way. 

Some foundations were tested and revealed to be sure.  My faith in God as a Christian gave me real strength and perspective.  More on that in a moment.  My wife was a real blessing: Karly expressed her love for me in real ways for my mental, emotional and spiritual health, and it has allowed our relationship to grow into new, more open ways.  My children have all grown in ways that has given them a more mature perspective as they have processed our family situation.  No one is perfect, and we have all had our moments of frustration.  But we are doing this together.

I am grateful because the cancer has made me more vulnerable.  I am less self-reliant and more dependent on God, my family, my church and my friends.  It’s healthier to be more interdependent in a community.  Some of the old American ideas of self-reliance go too far into isolation and alienation.  Yes, we should be responsible and capable adults able to take care of our basic needs, but we should also be humbly open to share experiences and burdens.  It’s the model of the most ancient church, and the best still for thriving modern faith communities.

One other complex idea that I have been meditating on is that this cancer is actually a gift and challenge from God.  I have never bought into the prosperity gospel messages.  God is not a shallow gift-giver only looking to give material Gifts.  He is not Santa Clause.  The Scriptures reveal a far more compelling, meaningful, and real perspective.  God allows hard and harrowing events to happen to his faithful people all the time.  From the fates of the disciples (None of whom ended healthy or wealthy) to the martyrs of the early church, it’s clear that God has a purpose in working through suffering.  It builds faith, reveals character, validates sincerity, instills compassion, and nurtures empathy.

Thanksgiving was a time of deeper gratitude than I have known for many years.  It was richer because of the circumstances.  And Christmas has always been about hope fulfilled.  So I find myself standing between those grand ideals, not with a shallow faith, but reaching into something more robust and enduring. Through the gates of thanksgiving, I can embrace the reality of hope that Christmas offers.

So Merry Blessed Christmas!

 

I wasn’t quite holding my breath this morning, but man it was taking a long time for the doctor show up.  We knew a chapter in this story was about to end when we got the results of the CT scan I had yesterday. Karly and I were just waiting, chatting a little, but silence would drift in and eventually take over the room. 

Finaly the door cracked open, and Dr. Miriovsky poked his head in, said nothing, but curled his finger for us to follow him, and then vanished.  Karly and I looked at each other, then followed him out into the hall and around into a little alcove to see my comparison scan images on the screen. Then he started comparing the results.

Well, God is gracious.  After 3 months of therapy, my liver cancer tumor is showing signs of reducing!  In general, the measurements between the liver and affected lymph node are showing a nearly a 40% reduction! I was not prepared for that news this morning, but it certainly was welcome.  Dr. Miriovsky was pleased with the progress as well.  While there are still hurdles ahead, we are taking a moment breath in this encouraging sign.  Seriously.  Just breathing.

               The last three months have been a tidal wave of mental, emotional, and spiritual energy that washed over us as a family.  I have never been confronted by more pronounced fear or seen more expressions of assurance and support from more people. It’s been a grueling wonder.  This menacing disease has given Karly a chance to express her love and encouragement. It has opened new friendships and deepened old ones.  It’s a blessing to be cursed sometimes.  But I am feeling grateful for merciful God, a loving family, good friends, and Hope.  I still have a long trail to walk, but this was a break in the clouds to let some sunlight in.

               I need to make some comments here. I was prepared to still praise God for whatever the news was today.  I really didn’t feel it was getting better – I get occasional twinges or pressure in my side that remind me that it’s there pretty much every day.  I still have cancer – it’s not gone, and there is plenty left that needs to be treated, and still a chance that it could all go sideways.  That’s OK.  I have been learning a lot.  For example, the last 30 years of living as a Christian has not been fake.  I am not a holy person and I have not overcome all my sin, but I have clung to the old rugged cross for a long time now, and I have found that it is a sure foundation for hard seasons in life.  This has been a season of applying the nuances of my faith, having a sure handhold with my Savior, and walking out into the dark trusting He knows the way.  I have learned more about lamenting – not just crying or complaining, but healthy grieving over the brokenness of body I have experienced every day. There are blessings of revelation about the true state of my soul, my family, my friendships, and my life that came with my cancer diagnosis, and I am grateful. I want the cancer to die, but the revelation of truth it brought is a unique gift when seen through the eyes of faith.

               So what’s next?  We may pause the chemotherapy after this current sequence (After Nov 16) and focus on the immunotherapy into February.  We have also been working with a holistic physician and will continue to use some well-regarded supplements and healthy diet choices to hopefully continue the momentum.  We are notifying our surgeon of the scan results and will make a team decision.  The middle of the road answer still looks like surgery in the February timeframe, but this is real progress.

               But that’s a chapter a few page turns away.  For today, I get to just breathe in some fresh autumn air. 

 

I’m so glad I live in a world where there are Octobers – Anne of Green Gables


Highlights

  • Treatments are going well
  • Nov 6 – CT Scan
  • Family Trip to Smoky Mountains
  • Trail Life Boys Campout

 

 

 

 

Being an Outsider


October 2023

I love being outside.  I love standing somewhere with a view and some fresh air, stars above and a campfire flickering warmth.  It’s been a good month for that. 

But first, the health update.  We have stepped into the new season of chemo/imuno-therapy and all the accompanying bruhaha that goes with it.  Therapy weeks now have a rhythm.  I spend most of Tuesday at CCI (Clearview Cancer Institute) hooked up to a various set of infusions that run for 7-8 hours.  I am happy if I get a window seat. The next couple of days are effect and recovery – mostly fatigue, occasional nausea.  There is a subtle and annoying effect of Chemo-brain – a temporary, but irritating effect of ‘being off in a fog’. It usually wears off within a few days, but I catch myself lost in a moment or forgetting why I walked into a room.   Or it could just be that I am 53 with 5 kids and lots to do all the time. 

I can’t tell yet what affect all this is having.  I do feel the tumor most days, but it’s small pressure, like pulled muscle that is just making its presence known.  Many times, I feel nothing.  On rare occasions, there may be a sharp passing moment of pain.  Like Stella (The name the kids gave to the Tumor) walked by uttering a curse word: “I’m still here trying to get you.”  Stupid Stella.  Most of the symptoms I have come from the treatment. 

 

The new milestone is November 6th for a CT scan to take a close-up picture of Stella (The Tumor) and see in detail what is going on. It will be a first look at what the last few months of treatment have done, measuring the growth, stability, or hopefully reduction in the size of the tumor. 

I continue to get great support from the doctor and the staff and feel well taken care of.  Karly continues to take the best care of me – great diet, great advice, lots of love, patience, and encouragement.  As we approach 18 years of marriage this month, I feel more blessed than ever that she walked through my front door all those years ago.  Mason spent a day with me at treatment, and all the kids make sure I eat well, stay hydrated and get lots of hugs. They are a fantastic team. 

As a family, we had a chance to get away a couple weeks ago and go to the Smokey Mountains.  There were a lot of people on the more popular trails, but there was also a good opportunity to take in the sights and sounds of a beautiful set of mountains.  The trees were just touched with the beginning of fall in the south, and the temperatures were cool in the evenings and pleasant in the day.  As we drove through winding roads to Cade’s Cove, Clingmans Dome, and Laural Falls, a gentle cascade of colorful leaves greeted us around every turn.  We stayed in a pleasant and unpretentious cabin a way out of town and cooked our own meals without rush.  Karly even spotted a great little coffee shop for my coffee fix. 

It was time well spent connecting with my wife and kids and being separated from some of the anxiety of the situation. There is an undeniable shadow of fear that hovers around the hedges.  Most of the time, I’m ok.  But there are moments when that shadow jumps you.  You can’t go through this without a new set of glasses that colors how you experience the world.  I am more present to the time of day, and the lay of sunshine across the floor.  I drive with a greater awareness of the beauty of the cotton fields white and ready for harvest.  But I am sometimes even quicker to temper when frustrated or overwhelmed if stacked up with tasks.  Unexpectedly, I take greater pleasure in completing mundane tasks – making an omelet for Karly for breakfast or getting a work task done even if it’s just a compiled list of metrics. 

I also got to attend the Trail Life weekend campout with all three of my sons Mason, Colin and Brenden at a local state park. I was privileged to present the campfire devotional Saturday night, and it was a wonderfully clear night, with stars from horizon to horizon. As I encouraged the boys to watch the sky and pick out a star, I told them something close to the following: 

Most every star above is unimaginably far away. Oh, we can measure it in light years and with math, but the distances are so big that we really don’t have a way to experience that kind of distance in a human way.  The light that you’re seeing has been traveling for years, or decades, or even centuries. Maybe Lincon was president when the light you see right now started its journey. Or maybe the pilgrims were sailing across the North Atlantic on their way to the new world. Maybe Charlemagne was gathering the last remnants of the Roman Empire and laying the foundations of modern Europe. Or maybe, just maybe Jesus was teaching his disciples on the shores of the Sea of Galilee when the starlight you see began its journey. 

But you see, starlight is even older than that. Inside the heart of a star, when the powerful heat and pressure create photons of light, it’s so intense that it can take years for the photons of light to reach the surface. But once light reaches the surface, they shoot off in the void of darkness of the night sky, leaving behind years of intense pressure surrounded by other photons. They travel in a singular direction, unhindered, unstoppable, across the vast expanse of space until they reach your eye, like a tiny kiss of energy. 

There is a parable here, and four scriptures frame it, like points on a compass. In Psalm 19 it says “The heavens proclaim the glory of God. The skies display his craftsmanship. Day after day they continue to speak; night after night they make him known.” In the beginning of Paul’s second letter to the Corinthians, he writes this: “God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.” In the letter to the Ephesians, Paul also writes: “For we are God’s masterpiece. He has created us anew in Christ Jesus, so we can do the good things he planned for us long ago.” Finally, in his letter to the Galatians, he says this “But the Holy Spirit produces this kind of fruit in our lives: love, joy, peace, patience, kindness, goodness, faithfulness, gentleness, and self-control. There is no law against these things!” 

Now, I know each of these passages has a greater context and intent, but I think there is a parable of starlight that weaves these ideas together. When the spirt of God comes to dwell in us when we put our full faith in Christ, it’s like we are a star with all that energy in our heart. We are comforted by God. We want to be and do good things. The fruit of the spirit is borne in us and wants to radiate out through our actions: We do something kind or loving. We show patience of gentleness to someone who needs it. We want to comfort others. Our good attitude and actions are like the spectrum of light going out steadily out into the darkness.  

Now maybe what we do is acknowledged right away by the people we love, or maybe what we do is ignored for a long time. But the light keeps going, we keep shining, because the energy comes from the spirit of God in us, not from people rewarding us with gratitude. Did you know that even after a star dies, the light of it’s goodness still keeps shining out into the universe? Eventually, someone will see and remember the good, even if God is the only one to see it, for he sees it all. 

So we all sat quitely for a few minutes looking at the stars.