October 2023, BaileyLife

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

Highlights

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.

Continue reading “Being an Outsider” →

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 4^th 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!