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. 

 

A new reality.  A paradigm change.  A different world.  Whatever metaphor you want to use, cancer has changed our lives in a very real way, and we are starting to see the world from a new perspective.

In the last few weeks, we have had a few updates and confirmed a schedule moving ahead. 

Biggest news is that we met with a surgeon at Vanderbilt. We appreciated his approach and patience with our questions, and  confirmed that 6 months of chemotherapy and immunotherapy are the best approach and then re-evaluate with an eye to surgical recission.  Apparently 10 years ago, they would have taken me straight to surgery and taken out the tumor and considered that a success, but the best practice now is to do the 6 months of therapies to reduce the chances of re-occurrence.  And the immunotherapy is less than a year on the approved list, and in a small but significant set of patients, it has been very successful. So, six months. 

I will have a CT scan in November or early December, then another sometime around late February.  I do know I am not a candidate for a transplant because of cancer in my lymph node near my liver.  Based on the tumor size and location, he would likely take 30-40% of my liver.  That sounded like a lot, but he reassured me that they don’t start to worry about liver failure until you start looking at a 70-80% recission, and we are not going to let it get to that stage.  Apparently, you can take 70 percent of your liver and not really have any long-term issues.  Huh.  Kind of amazing the durability of some organs.

So, we have a course ahead and a general plan.  Now I just need my body to cooperate.  I came in this morning for my 4th round and found out that my white blood cell count had dropped far enough that I could only take 75% of my scheduled dose.  We are balancing knocking out the cancer with knocking out my immune system. It’s a game of chess with the variety of risks I face.

Thank you for your continued prayers and concern. We are working hard to manage our family schedule with a new schedule of medical appointments and treatments. We do have a very short list of meal nights for treatment days that our close church family has taken care of.  Once we get further along down the road, other needs may arise that we will ask of our extended community, but so far, we are blessed and provided for.  I appreciate the kindness of prayers offered for me.  I do believe that God hears our prayers, and that he acts according to his wisdom and plan in people’s lives.

As a family, we continue to adapt to the new patterns of this reality.  The basic pattern means that I just don’t have the energy and endurance I used to have for the few days after a treatment.  I don’t sleep very well for 3-4 days, and I must fight the occasional nausea, but all in all, it’s been manageable.  I eat a lot more fruit and nuts; and I drink a lot more tea and water.  There are random moments of sadness and fear and even lamenting, but there are also moments of strength, encouragement and perspective.  When I walk through the park, I treasure the trees and sky even more than before. 

And there are blessings even in the treatment.  Mia came and spent the day with me in treatment.  We both got work done, but we also had an epic Uno tournament that had us both laughing and laughing.  It was a good day.

I had a well-meaning friend ask me out of concern how long I had.  I don’t honestly know.  I don’t think any of us know, either.  I have cancer, so the question seems closer, but we are all on a narrow sliver of habitable reality. We are all on thin ice. Go five miles up and you can’t breathe.  Heck, go 5 feet down and you can’t breathe either.  You can’t drink ocean water, or live in it, so that’s 70% of the surface there. Mountains and deserts make nearly ½ the land area uninhabitable.  That leaves only 15% of the Earth’s surface habitable. Go 10 days without food, 3 days without drink, and 10 min without air. We have all had close calls with accidents or illness. 

The treasure of life is the remarkable miracle of experiencing it, and how unlikely it all is. It makes me grateful to God for making me, the beautiful world outside, and my wife and children, my family and friends.  My prayer for you today is no matter your current situation, you can have a moment of awareness of this astonishing world. And then, maybe a one extra moment beyond that where you see the hand of a creative and sustaining God working in ways we are too busy and too small to imagine.

Mia was my study buddy last week for chemotherapy.  It was a good day to have some fun company. 

There was a epic Uno tournament as well.  I had a perfect hand of Uno (Won in 6 turns!) but the last hand was epic with draw 20’s and TWO card hand switches.  Mia skillfully won that match!

 

Mason and Colin and I were able to go on a Trail Life campout a couple weeks ago.  Shenanigans ensued.

 

I was also able to take Brenden out to the Archery Range.  He’s getting pretty good!

 

This is the Jupiter Lighthouse in Jupiter, Florida, near my childhood home of Stuart.  As a symbol of hope and safe harbor, lighthouses have always held an attraction for me. We took this picture in 2021 during our last trip through Florida.

Ready for the Next Round


Thanks to all of you who have been praying and sending encouraging notes – I have been overwhelmed by the number of prayers and encouraging messages I have received. I feel very blessed to have had so many family and friends reach out.  If I have not personally thanked you, please know that I am reading everything, and will reply in time as I can on our journey.

Last Wednesday, (11/6/23) was my first Chemo treatment, and it went smoothly.  It was a long day – a full 8 hours of transfusions (2 chemo medications and Immunotherapy, along with supporting medications).  I left feeling a little strange, a sensation that was hard to describe, but I knew they had pumped a lot of SOMETHING in my system.  Then came the waiting for exactly how my body would react.

Thankfully, I felt pretty good the next few days.  One thing they gave me was a steroid, which made me feel a little jumpy on Thursday.  Nasua was very mild on Thursday and Friday, and I certainly felt fatigue on Friday and Saturday, but by Sunday I was feeling on the upswing, and by Monday, I felt pretty normal, which is a great response, all things considered.

So today, I start the cycle all over again.  I hope that the pattern continues, and while the fatigue was real and I needed some extra rest, it was manageable.  Honestly, the most consistently uncomfortable has been the port in my shoulder.  I am getting used to the feeling of an object under my skin, but it still makes my skin crawl sometimes.  At this moment, I am hooked up and receiving round 2.

I continue to ask for prayer for this process.  Healing, bills, time, work.  There are so many changes making life different, and we are trying to find a new ‘normal’ to this new reality.  I was touched by something one of my pastors said a couple weeks ago – when we pray for others, our faith is lifting them when their faith may by weak.  This communal effort in upholding the concerns of others before God and sharing in the work of recovery is something that God acknowledges and blesses.  This is easy to understand as basic Christian principle.  We pray for ourselves and are instructed to pray for each other.  But as we experience sincere prayer out of concern for others, we open a stream of compassion that changes us for the better.  Karly and I discussed this week how it really is not a burden to pray for others or be involved in their heartache or burdens – It’s often a blessing to able to share the weight.  So if we ask how you are – or how we can pray for you – it’s a sincere question that you don’t need to dodge.  Life is going on for all of us, and life has plenty of trouble for each day.  Keep living it and sharing it as you go.

Thanks again for caring and reading.  I hope you find a beautiful moment today, even if it’s just a glance out the window.

 

The news 

I have reached out to many of my friends and family with the news, but to tell everyone while processing difficult news has been hard.  The bottom line is that I have been diagnosed with locally advanced liver cancer, and I am starting chemotherapy and immunotherapy this week.  I expect to go through about 12-24 weeks of treatment in the hope to shrink the 7cm tumor on my liver, and either eliminate it or have surgery to remove it.

How we got here

In late July, I began to feel an uncomfortable pressure on my right side but though it might be a pulled muscle from karate practice.  But it would not go away. During a routine visit with my primary care doctor, he scheduled an ultrasound on 8/4 to investigate.  This confirmed the presence tumor, which was again confirmed with a CT scan on 8/11.  After a referral from Dr. O’Neil to Oncologist Dr. Miriovsky, I had a biopsy on 8/17 and full body PET Scan on 8/23, with a few blood tests in-between.

The bad news was a diagnosis of cholangiocarcinoma in my liver and adjacent lymph node. The good news:  liver function is acting normal, blood work looks good, and the PET scan shows that it has not spread anywhere else in my body so far.  I am not losing weight, and I am not experiencing extra fatigue.  I do get some discomfort in my side, usually just some pressure, but occasionally mild pain.  In fact, after a year of eating better and practicing Karate, I am in better shape then I have been in 20 years, and my doctor even took me off my cholesterol meds!  Except for, well, cancer.

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