Never Waste a Good Day
High Level Process Update
It’s been a while since the last updated, and it seems like a lot has happened. Long story short, the cancer has spread to some new places, I’ve had radiation on some places, and I’ve tried some new drugs that generally haven’t worked very well.
A few more details for those of you who just want the highlights of my medical condition, and don’t really get into the other 200 paragraphs: The lung tumors are still growing, and now I have one in every lobe of both lungs; I still have lesions in the liver; I also have a lesion on the left front of my pubic bone; and other miscellaneous areas like abdominal lymph nodes, etc. The next step is radiation on the largest tumor in my left lung, which should start in the first week of January. The goal is to remove any potential of having a functional impact in the lung, but this is only palliative - It will not change life expectancy or the eventual outcome.
Why now? Well, I told my chiropractor’s wife a few months ago that I was going to write a new post soon, but I didn’t. Yesterday she reminded me that I hadn’t written, so I decided it was time.
Also, it’s a good day. And one thing I’ve learned: Never waste one of those.
Summary of the Past Few Months
In the spring I experienced rapid cancerous growth in what is left of the rectal area of my colon. It was NOT pleasant, as you might imagine - I will spare you the details. Radiation fixed it almost immediately, with really no side effects at all. I was very thankful to get past that little unexpected detour. Not fun.
A little after that, the PET scan in March showed a new bone lesion, on the left front of my pubic bone. I started to have pain in my left hip to the point that I couldn’t run anymore. I got radiation on this lesion also, which helped a LOT. I still cannot run, though, and still have fluctuating pain that interferes with walking and getting comfortable in bed.
On the bright side, I met a WONDERFUL chiropractor and his wife, and have enjoyed many sessions getting to know them. He has helped me quite a bit to stay as functional as possible, even though he cannot fix the root cause of the pain.
The other growth and new metastases have not caused any effects at all that I can tell. The main struggle other than the bone lesion pain has been drug side effects. In the later spring I had one round of Vectibix (the rash drug) along with 5FU and Irinotecan. It was terrible. I was completely exhausted and extremely nauseated for a couple of weeks. For the rest of the summer I took only Vectibix and Irinotecan, and it was mostly ok.
At the end of the summer, my oncologist moved on to another job, and my new oncologist recommended I change drugs. The growth had been slow but steady up to that point. So I switched to Avastin and Lonsurf, the pill form of a drug similar to 5FU. For the first month it was fine, but then the nausea and fatigue progressively got worse and worse. The week of Thanksgiving I spent a lot of days sleeping. This was driven by fatigue, but even more so the side effects of anti-nausea drugs. The first line for nausea is Zofran, and my second line is Compazine. If this doesn’t work, 1 or 2 mg of Ativan will work. But this is what I take anyway to sleep at night, so if I have to take it during the day, I will spend the day in bed asleep.
Anyway, Avastin and Lonsurf together were not effective at all, judging by CEA score. However, in the lastest scan, the liver lesions are actually a little smaller. Grok (xAI / Elon Musk’s AI chat bot, which is my favorite) attributes the liver lesion shrinkage to Avastin, because its primary mechanism is to prevent the formation of new blood vessels, and liver lesions are highly vascular.
But the growth of the lung tumors called for another change in systemic treatment, so today I started Fruquintinib. It has only been on the market for about a year, and has a couple of mechanisms that are similar to Avastin. It comes in pill form, and I will take it for 3 weeks on and 1 week off. The main side effects reported are fatigue / lack of energy, abdominal pain, and muscle/joint/bone pain.
My favorite pain medication is Tramadol. It has helped me get through a lot of days that I would not have made it through otherwise. There are no side effects that I can tell, other than a slight mood enhancement. Any day I go to work, the 1/4 mile walk from the parking lot to my desk is sometimes unbearable without Tramadol. It doesn’t do anything for headaches though - You have to take Tylenol for that separately.
One more drug: I was on the steroid Dexamethasone for almost 2 years. Long term steroid use is bad for you, so I weaned myself off of it several weeks ago. The hardest part was fatigue, which was compounded by building toxicity of Lonsurf, the “5FU” pill.
The fatigue and nausea have dragged on for weeks since my last dose. I assume this is starting to be more due to the advancement of the disease itself, and not only drug side effects.
Sunday morning I really wanted to be at church, but it was absolutely not happening. I was mostly unconscious, and my head and hip were killing me. The radiation oncologist had suggested last week that some of my hip pain could be due to inflammation and not new growth. So I decided to take 1 mg of Dexamethasone again to give it a try. By the end of the day the hip pain was 80% gone. The nausea went away too.
The exhaustion continued, though. It has been different from anything I’ve experienced before this point. Tuesday night I told Christina that I didn’t think I would make it much longer.
I was very uncomfortable that night and couldn’t go to sleep until after 11:00. I woke up just before 5 am and felt like a completely new man. Seriously, I have no explanation for this, but I have felt 100 times better yesterday and today than any time in the past few months. I went on a very nice bike ride yesterday. I’m planning to keep the 1 mg per day of Dexamethasone for now.
As I told my new oncologist, what I’m aiming for is to maintain as much functionality as possible for however long I have. The medical staff are all honest that they cannot make any significant difference in my life expectancy no matter what drugs I take. This is why I might seem so cavalier about pain killers, steroids, and benzodiazepines. I’m trying to maximize what I have left, whatever that is.
In the graph below you can see how responsive CEA score has been to Vectibix over the past year. Whenever we have paused treatment to do localized radiation, the CEA has spiked, and has come right back down as soon as Vectibix was resumed. However, there has always been an underlying upward trend of CEA independently from those events, corresponding with the continued slow growth and spread to other areas. The spike at the end of the data corresponds with switching treatments from Vectibix to Avastin/Lonsurf.
Is there anything more interesting?
I find all of this material very boring, so I don’t really know why any of you read it. I wish I had something better to say. It seems like it takes a lot more work than usual to make it through each day. Every day is different, and I have no idea whether it will be a good or bad day, or how to make a day good.
I guess I can say this now: I have still been given enough strength and hope to make it through every day so far, even on days when I’m laying in bed and can’t do anything. It’s exactly like the song says, “Day by day, and with each passing moment, strength I find to meet my trials here. Trusting in my Father’s wise bestowment, I’ve no cause for worry or for fear.”
I can say this is true. Even if it doesn’t feel like enough strength some days, I’m still here. Whenever we sing this song “Day by Day” it reminds me of when I used to feed Cheerios to my kids in church to entertain them whenever they got restless. Since the goal in that situation is to buy time, what I would do is dispense only one Cheerio to them at a time. Then, with their 18-month-old fat fingers, they would have to manipulate the Cheerio around and pinch it in a way that they could feed it into their mouth. Each Cheerio took considerable time and effort.
The analogy isn’t perfect though - in real life all the days our Father bestows on us are different, whereas all Cheerios are basically the same. We have no idea what is coming in any given day. But we know there will be nothing in it that is so uncommon to man that we cannot find a way to manage it with grace and righteousness. This is what 1 Cor 10:13 says, which we must never forget, even on our worst days:
There hath no temptation taken you but such as is common to man: but God is faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it.
Another great one that I like - the account of Job in James 5:11:
Behold, we count them happy which endure. Ye have heard of the patience of Job, and have seen the end of the Lord; that the Lord is very pitiful, and of tender mercy.
I’m definitely not as righteous as Job, and my problems are nowhere near as bad as his, so surely I can endure it, whatever it takes.
Great Memories
A couple of months ago when I was feeling really good, I went with Grace and Emma on their “senior trip,” which was a cruise in the Bahamas, leaving from Port Canaveral. It was a really great time with perfect weather, and really great food.
On one “bad” day a couple of months ago, I was walking out of work and a good friend picked me up to give me a ride to the parking lot. He was a welcome sight for multiple reasons - most immediately because it was a painful day and it was going to be a long walk. But more than that, we can always have a conversation about our mutual faith. In the 5-minute ride I gave him a brief summary of my status. When we got to my car, he asked if he could pray for me. It was a really wonderful prayer of faith and supplication for strength and peace for the days to come. I really appreciated that - it was a real blessing.
I think my friends agree with me that Conestee runs are the best - trail running through the woods for 4-5 miles in random small groups out of our larger group of 20-40 church friends. Those were very meaningful times to me. I hope I can run it again some day.
In place of running, I took up biking. Since the scenario of biking is different, what I’ve done is gone for a ride with one friend at a time. This has created some very meaningful conversations and good time spent.
I love how the Lord puts special people in the right places to make a difference in ways they don’t even know. Being in the cancer center all the time, there are specific people who stick out as always knowing my name and being exceptionally kind. They make a real difference in my day when I get to see them. The cancer center is a very depressing place - Most patients are elderly and have advanced diseases. It is clear most of them are not going to live much longer. So it takes a special person to work there, and be a happy, smiling, genuine friend.
Sam Inman has for some reason dedicated much of his time in retirement to working as a valet in front of the cancer center. It is always great to see his friendly face whenever we pull up. Kaylee works at the front check-in desk, and always remembers my name and asks how I’m doing. Vera worked in the port lab, and we had so many great conversations about raising teenagers, and the hope of Heaven. A new woman I met in the peripheral lab just loves sticking people and taking their blood for labs. She just absolutely loves helping people in this way every day, and only wishes she had time to work more hours. There are about 2 infusion nurses who, if they are on the floor that day, you are guaranteed there will be no nap time. It’s because when they laugh, which is often, the entire floor knows it. Some people find that annoying, and I understand. But I really find it endearing, and I really don’t care if I can’t sleep. Do you realize how happy of a person you have to be to work in a cancer center and survive? These are special women. I’m thankful for each one of them - they make my life better.
One other side note (this is the one I told the chiropractor’s wife was not directly about her). I have made the point to a few younger wives recently that I hope they consider the impact their husband has on the world, outside of his impact on their marriage relationship or even his father-to-child relationships. Sure, no man can be a true success outside of the home without being a solid success inside the home first. I’m not speaking of that, but about the impact a man can have on the rest of the world, which his wife may not ever see or understand. Some younger wives, especially if they married primarily for romantic feelings, measure their husband by the way he continues to make her feel after their wedding day. I am just asking women like that to consider the bigger picture - That man may impact me in a way you could never see, and I hope you can appreciate that. After trying to explain this to little avail, Charlie Kirk was assassinated. That was one great example of a man who accomplished great things in the world outside of his family at home. But we can see he wasn’t neglecting anything at home - His wife immediately picked up the mantle and kept running. This was a great example of a real power couple. The point I’m trying to make is for wives to not be too myopic about their husbands who are really good men. I need to have their impact too - He’s not just for you.
We got to visit Hilton Head Island three times this year, which was really nice. The first time wasn’t so great because I was really sick, but the other two times were much better. It’s really my go-to place to relax for a couple of days, whenever it’s warm enough. There is nothing like South Carolina Low Country. I got to go on several bike rides with the girls looking for good coffee shops, which was fun.
So, by the way, how is Christina doing? She is a pretty private person, so you usually won’t get much of an answer. I can say, MOST of the time she has a special ability to ignore worries or fears about the future and just deal with whatever is in front of her that day. So she homeschools, cleans a couple of houses, pulls off a good-sized home improvement project once in a while, hosts both families for Thanksgiving, etc. She is very strong and keeps going, no matter what kind of a day she is having or I am having. She does everything she can to make it to every doctor’s appointment she can. I do not know what I would do without her. She is not living in denial of what is facing her.
A couple of things weigh on me in this respect… For one, I hope men do not assume she needs more help than she actually does. She is very capable, and she has a better idea of what I would envision for the direction of our family than anyone else does. Not that it necessarily goes in the direction of the vision, but you get the idea.
Life in Denial
The truth is, much of the past four years I have lived mostly in denial. Except for surgeries here and there, and until more recently, life has been normal enough that I really didn’t think about death very much, or how soon it may come. But the truth is, I should have been expected to live about 2 years after diagnosis, and I am already at four years. And we are not in a terrible situation, as long as radiation on the largest lung tumor works well enough. So this is a blessing, but I tend to push off things I should probably do, and things I should probably talk about before we get too much farther down the road.
I was thinking about this several months ago, in fact, during a particularly bad time. I was suffering from chemo side effects to the point that I didn’t think I would live much longer, and I wrote this next section.
Life When it Feels Short (written around May 2025)
I remember a few times during my first “real” career years at Michelin R&D that I became overwhelmed with tasks, projects, and looming deadlines. My first boss after graduation from Clemson as a mechanical engineer was Olivier Gerardin, a Frenchman with a PhD in some special aspect of electromagnetism. He had just arrived in the US and started his job as my manager around the time I graduated from Clemson (the first time).
On these occasions mentioned above, I eventually decided to spill my guts to my boss and ask for help on what I should do with my insurmountable workload. So immature… After patiently listening for a number of minutes, he would always walk through the tasks and projects with me, rank them in importance, and delay or cross of the ones he did not care about as much. I always left his office with a great sense of relief with my revised, more manageable, usually more enjoyable, task list.
Years before, I recall my piano teacher doing the same thing… As the end of the school year and upcoming spring piano recital in May loomed on the horizon, I would panic with the number of piano pieces that were too hard for me to learn in the time remaining. In these cases I would eventually spill my guts to my teacher - one Dorothy P. Kelly (affectionately known by her adult friends as “Dot”), famed historical pianist and organist of Mitchell Road Presbyterian Church.
Mrs. Kelly, by the way, has always been a very noble and proper southern woman - blended with grace and kindness. Her poise and demeanor often stood in stark contrast to my rude, youngest-child self, who always believed I was smarter and more talented than I actually was. This was a frequent bane to my schoolteachers as well, thought they rarely said so, perhaps because they had worse problems to address.
Mrs. Kelly tolerated me for a solid 12 years as a student. I still remember the day my mother first brought me to her house at 7 Belgrade Dr in Greenville when I was six years old. This is a stately, quiet neighborhood full of 1970’s era brick ranch houses. I think the door knob was about eye level that day. And so it began - 12 years full of weekly lessons, events, and competitions until my senior recital in May 2001.
Back to the topic at hand, Mrs. Kelly delivered me several times in the mid-April panic crossing some pieces off my list of things to learn, and even sometimes suggesting that I resurrect a piece I had played in former years, which I might now represent better, that is, at a more skilled level. I always left those lessons with a great sense of relief at my new, manageable (often more enjoyable) list of songs to learn, just like my first job at Michelin.
As I write this paragraph, Mrs. Kelly is preparing to hold her 50th spring recital this week, I believe prominently featuring two of her granddaughters. I am very sorry I have to miss it because I am on vacation.
As I think sometimes about my life possibly being shorter than I wish, and perhaps drawing to a close in a matter of months, there are a few personal things that weigh heavily on me. These are very few, actually, because I know Christina to be very much on the strong, wise, and intelligent end of the spectrum.
But there are other things that I’m sure will begin to weigh more and more heavily on me as the time draws closer. When will my last day of work be, and how long will I live afterwards? How will I know when to stop working?
Did I write down enough instructions on how to fix things around the house when they break again, which will save many hours of investigation?
Did I list all the parts on the lawn mower that have already been replaced, which should then be considered as to whether it is worth replacing the next part when it breaks down again the week after I die? Maybe that will finally be the time I never got to see, that it gets pushed off the trailer straight into Twin Chimneys Landfill…
Did I document all the vehicle maintenance items that should be done next? Did I make the instructions clear enough on how to hook up the well pump to the generator whenever the power goes out?
Did I leave the kids on the best track with the Lord that I could with the little influence I have? Did I leave all my relationships with good men and women intact? Did I thank enough of the people who made a difference in my life, but probably never knew it, like Olivier Gerardin and Dorothy P. Kelly? How about my pastor - did I write enough in my last blog post to show how important his life’s work has been to my life?
Did I thank my parents for raising me in a godly household as well as they possibly could, far better in most important ways than my own children have been raised? Did I thank my wife enough for the two decades of happiness and pleasure? Did I thank my children enough for the times they were obedient and receptive to my teaching?
There are many other things I probably will not think of until later… When should I clean out my junk dresser drawer so Christina doesn’t have to do it?
I am sure at some point it will start to feel even more overwhelming, like I cannot finish what I think a man’s life should accomplish before it is done. But whenever that time comes, somehow I think the Lord will do something like Mr. Gerardin or Mrs. Kelly… “Don’t worry about this one son, I’ll take care of it.”
One brother said in church recently that he loves nothing better than to have a good cry. Every snowflake is different, brother, but I think that’s stupid - I don’t understand it at all. I never cry. Here’s a Chuck Norris joke for you: The only time he ever used a double for stunts was for the crying parts. Don’t get me wrong, I have cried a handful of times in my life, even since the last time my mom gave me a spanking for wetting my pants. Maybe five times.
But today I cried a lot. Christina and I walked alone on the beach just after sunrise, and conversed at length about all of these things. It was needed. It will be ok, she can do this, whatever the future holds. The Lord is with her, and she knows it.
Lessons from the Past
Speaking of things common to man… 5 years ago I had a nephew on Christina’s side of the family who passed away at the age of 7, after a 6-month battle with cancer. It was a trying time for the family, to say the least. Very little warning, a very fast progression, no time to react or change course, with no good options anyway, and then he was gone.
I was so impressed by the way their church handled the funeral, though, that I had to make some notes that day so we could be reminded of those lessons in the future. I knew we would need them again. Of course somewhere in the back of my mind I knew these lessons might be needed for myself. And here we are.
Oct 10, 2020
Woodruff Rd Presbyterian showed a lot of love and kindness to our large extended family - the meal was expensive and served with 1st class professionalism and graciousness!
I’m also grateful for the 3 ministers who preached the Word with so much scriptural truth. I just want to jot down what I can remember of their points, because they were so good and I will need them again.
In fact, we will all need them again, and our hearts can be steadfast in the midst of future trials if we believe and remember what we have been taught... I hope I can be as faithful and steadfast as the rest of you if/when it’s my turn.
Graveside Service - Pastor Dodds
-Opening sentence was from 1 Thess 4:13. We sorrow, but not as others which have no hope.
-Ps 90 in its entirety: We are at the mercy of God to live at all as sinners. Our lives are short, like grass, 70 or possibly 80 years with pain and sorrow.
-Make us glad according to the years You have afflicted us.
-We ought to foresee the soon end of our lives and apply our hearts to wisdom, according to v12.
-Ecc 7:2. It is better to go to the house of mourning than the house of feasting, because death is the end of all men, and we who live should take it to heart.
Homily directed to the children - Pastor Anderson
-Exhortation to right thinking and perspective: First, we should hate sin. All sickness, sorrow, and death is because of sin. Not that Sawyer died for his own sin specifically, but we are all under the condemnation of sin because we sinned with Adam.
-Jesus taught his disciples that separation was necessary because we do not all go to the place He prepares for us at the same time.
-Jesus exhorted his disciples to love one another at an extremely high standard, which is what the children (and all of us) should do toward each other.
Sermon - Pastor Robbins
-Loss of children is sadly not very unusual over the course of history for believers and unbelievers alike, because of our choice in Adam in the garden of Eden. Without mentioning the passage directly, the point seemed in line with 1 Cor 10:13 - “There hath no temptation taken you but such as is common to man: but God is faithful, who will not suffer you to be tempted above that ye are able; but will with the temptation also make a way to escape, that ye may be able to bear it.”
-The Most High works all things after the counsel of His own will. This affliction is from God.
-The right response is that of Job, who fell down and worshipped upon the news of losing his 10 children all at once. “Naked came I out of my mother's womb, and naked shall I return thither: the LORD gave, and the LORD hath taken away; blessed be the name of the LORD.”
-The fruit of the Spirit includes self-control and joy.
-Primary passage: 2 Cor 1.
-There are 5 primary sources of comfort for the believer: the Word, the Father, the Spirit (also called “the Comforter”), our union with Christ, and other saints.
-God names Himself in v3 “the Father of Mercies” and “the God of ALL Comfort”. Meaning, He is jealous that all comfort is sought from Himself only, and we do not seek comfort in any other place.
-According to v4, God does not comfort us so we can be comfortable... He comforts us so that we can comfort others!
-No one should be asking why. In addition to God’s sovereign will and the sinfulness of man, Rom 8:28 and following: ALL things work together for GOOD to the Elect - to those who love God and are the called according to His purpose.
I have little to add to this. I just have to re-emphasize that God is jealous of all our comfort and does not want us to try to find it anywhere but Himself.
Also, about God’s faithfulness. We tend to think of it in terms of the song, Great is Thy Faithfulness, which is highly valuable - He is consistent and true in His promises of what He will do for you. But another way to look at faithfulness is that He is faithful to Himself. Faithfulness to me implies that He owes me something, which He does not. But does owe it to Himself to be true to His own nature and attributes. This is even more comforting in a way to me. He is the Truth. He is the Rock. His way is perfect. I can ask for nothing more than to know that.
Closing Thoughts
What’s different about me now, after four years of this story? I guess I would have to let others answer that more accurately than I can. I think I care a lot less about some things than before, and a lot more about other things. It seems like most people don’t understand why I care about some things as much as I do. I guess I’m not a very good explainer, but I’m doing the best I can.
One thing I’ve learned is to just not try to explain some things to some people, because they won’t understand, and it will just drive them away unnecessarily. And another thing I’ve learned is that sometimes I’m just wrong. Some people think that means I should never try to be right or insist that I understand something correctly again, but that’s one thing I don’t think I can give up completely. Commitment to a good and right cause is not pride. It’s humility. Faithfulness is not neutrality. There is a dire shortage of men who will tell the truth and explain it - I am certainly not on the map of the best people for this, but most people don’t even try to understand truth.
I only have a little time left. I’m trying to spend it together with my family and close friends, and I’m trying to spend it as well as possible to told “well done, thou good and faithful servant.” To be honest, I still don’t know the best way to achieve that. A “bad” day in my opinion is one that cannot be productive or enjoyable, and I’ve had a lot of those recently. I don’t know how many more “good” days I have. I’m sure most of you look at my life and wonder what in the world I’m thinking with the choices I make. I’m sure I have a reason, and I hope it lines up with the Bible, which is all I have to go on… I will find out soon.
I’ve heard it said so many times that people wish the Lord would return and time would end before they came to the point of dying. I can sympathize, but I can see it another way now, too. There is a big part of me also that would love to watch the daily operations of Jesus Christ ruling the universe from the inside. If you recall 1 Kings 22 and the conference in heaven that took place between angels and the Lord on how to get Ahab killed, I would have loved to have been a fly on the wall. If daily operations in heaven are anything like that, I would really love to be there as a spectator. There can be nothing like seeing decisions made by that amount of Power, Love, Justice, Truth, and Wisdom all at once.
So, I’ve said “never waste a good day.” My pastor’s wife commented that we should never waste a bad day either. Well, I guess that’s true - A day is wasted if it wasn’t performed with glory to God for the Cheerio He chose to dispense to you.
But like I said, when I say a “bad” day, I mean a day when I can do little or nothing productive or enjoyable. What I mean is, we should take every good day by the horns and make the most of it. Good days are wonderful. I never appreciated good days in the past like I do now.
I saw a sign in my chiropractor’s office, “Life does not have to be perfect to be Wonderful.” I wrote about it in a family/friend update, and less than 24 hours later I had an identical sign of my own sitting in my garage. There is only one man I know who could or would care enough to make something like that happen. First name: Dave…
I have important faithful friends - and what I mean is, faithful to the Lord and all He has called us to do. I love them dearly, and want to make it my life’s mission to show that. Starting with my own family. It’s hard to get along sometimes, but we have to make this work.
What do I want to do with my few good days? I really want to spend more time with my wife. I want to be in church whenever the doors are open. I want to have the most ordinary day-to-day experiences with my kids that they will never forget. We only have a few good days - Never waste one!
Until next time!!
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