Author: J. Michael Jones

Thanks for your thoughts and prayers and here is an update.

Renal function: Summary, the results are better.

Again, this is such concern because my kidneys are in such bad shape and the studies show that those with Multiple Myeloma and on dialysis survive, on average, 8 months. No one knows why renal failure makes MM so much worse. So, I have already had 5 months of dialysis. It doesn’t mean that, like turning back into a pumpkin at midnight, that I would expire in 3 more months. But it does mean my road ahead would be much more difficult if I had to return to dialysis.

So, on the last visit (I had not seen my labs yet) my oncologist walked into the room and immediately said, “I’m concerned, because it looks like your kidneys are failing.” The way (I realize I’ve mentioned this before) we measure kidney function is by glomerular filtration rate (GFR). Normal is above 60. Dialysis starts around 15. I started a year ago at 4. I had been running around 22-23 this fall, then the last time, it was suddenly 18. I was skeptical about the meaning of the result as; a.) I had been traveling to Minnesota and could not follow my usual diet, and b.) I had just eaten a steak two days before the test. I don’t normally eat red meat now.

Anyway, my intuition was correct and today’s GFR was back around 22. That’s still horrible, but means I’m stable and will not require dialysis at this time.

Chemo Change: Summary, the insurance company has not decided if I can have the new drug yet.

We did reschedule today’s chemo (old drug, Velcade) until next Tuesday, hoping by then the insurance company will have decided to let me have this new drug (ixazomib). We are hoping that most of my present symptoms are related to Velcade and getting off of it and onto ixazomib would profoundly change my life for the better.

There is a chance that the worst of my present symptoms are not related to Velcade and therefore changing wouldn’t improve my life, but we are praying that it does.

The oncologist also shared new information that ixazomib not only has less side effects and is an oral drug Vs an infusion, but also appears to work better at keeping the cancer at bay, per a recent study. Keep praying! Mike

With so many of you focused on your own issues related to COVID-19, I feel ashamed (in a way) of even mentioning this. However, tomorrow will be one of those pivotal days for me and I ask for your prayers and thoughts.

1. I mentioned that in my last labs 2 weeks ago had a sudden fall in kidney function. According to that test, I am only inches away of being back in complete renal failure, which would have major ramifications including a life span in measured in months. As I said, for several reasons, I think that test was flawed. However, tomorrow I repeat the test. Please pray that the test will be better, not worse.
2. Since the beginning of December, I’ve had a gradual decline in my quality of life, and we think it is related to cumulative side effects from my present chemo (Velcade). It is like a constant case of significant stomach flu, neuropathy, and a worsening rash We have applied to switch to another chemo (ixazomib) and tomorrow we will find out if the insurance has approved it. If all these side effects are related to Velcade and if they go away with switching to this new medication, it will make a profound improvement in my desire to live.

I threw out the bait, a video blog, and so far over eighty people have watched it (maybe this reflects how bored people are these days). Therefore, I will post the other 3 videos that were cut from that one sitting. I will clearly label these as I’m sure there are some that might interest you, and some that may not. You can pick and choose.

As I said, feel free to upload your own video link in the comment section.

This is an experiment and I will see where this goes. I have 4 segments of videos that I will upload separately and you can decide which ones you want to watch, if any. Mike

In summary of what I was trying to say last time is that we would all agree that the COVID-19 pandemic can be considered as an act of evil against humanity because it causes a great deal of suffering and death. Like all events of evil, from wars to viruses, to accidents and cancer like mine are part of this evil. The philosophical or theological question is why?

I was making the point last time that the American evangelical community, as well as some other Christians in various places in various times and many Muslims have a model of God as one who is all powerful, loving, just, and mirco-manages all of life. In this scenario there is no luck, good or bad, and no working out of natural laws.

But when you hold that position, or try to hold it, and real evil touches your life, it creates a tension that, in my view at least, is untenable. Say if your child is murdered, which I think is about the worst kind of evil anyone can face. You can pretend to believe that God has all four of the characteristics mentioned above, but deep inside, I believe that most people will start to doubt one of those four areas in order to reduce the tension and to help the throne (mentioned last time) to stop wobbling. Usually that unspoken doubt is in the area of God’s justice (or fairness) or in his love for you. Being around some cancer support groups I’ve heard such language expressed by Christians. Sometimes, especially when the suffering is great, you may start to doubt God’s power over the evil or even that he exist.

It is odd, but it seems that the one area that should be doubted is God’s sovereignty, but for some reason is the last to face such scrutiny. Again, sovereignty means different things to different people, especially to my Christian friends who have the John Calvin influence as I have. But what I mean by sovereignty isn’t the right to have control, but the choice by God to control all things.

The picture of the throne in the last post had a big “N” on it because it was Napoleon Bonaparte’s throne. He certainly led France (and lusted for all of Europe) with an iron fist and great power. But he did not try to micro-manage France, although he could have.

This is where I’ve come to accept the mystery of God. I have suffered a lot in the past 14 months, more than I ever thought a human could bear. But I have never doubted God’s existence, his power, his goodness or love. But the reason that I have not, is because I was able to vent off the pressure decades ago when I faced my first great loss in life, by accepting that God chooses to let the laws of nature to play out in most cases. Some of those laws end up in suffering and what I would call evil. I had one single protein gene in my blood plasma that, when it went to reproduce, folded in the wrong direction and since then, following the natural biological laws associated with that fold, has completely wrecked my life. It did not have some big intent for something, just a cosmic mistake. I mean, in my case, no one knows why. It could even be caused by some unknown virus as some cancers (like cervical).

It is not because God is impotent to do anything about it. I think that is what Rabbi Kushner was trying to say in his best seller, When Bad Things Happen to Good People. It has been decades since I’ve read it, but I was a dyed-in-the-wool evangelical at the time and hated the book because I thought he was concluding that God was lessor than the laws of nature and therefore impotent to stop them.

I am saying something very different here. My evangelical friends, I’m sure, get mad at me when I say these things because, like me in the 1970s, always tend to interpret me as saying God is too small. I’m really saying the opposite. God is huge, unknowable by our mortal minds but for some mysterious reason allows these evil things to work their course in the world and it is not by his design to punish us, teach us, or shape us and certainly not because he is done with this world and is about it end it all. I don’t know why he doesn’t intervene.

So back to the COVID-19 virus specifically. The Christian theological view of evil, is that because mankind had sinned, evil was allowed to enter and taint this, otherwise perfect and wonderful world. But I spent some time thinking about viruses in general and back to my original image on the last post, did God create them for a good purpose and then they went rogue?

I went back and studied this role of viruses from a biological perspective. While viruses have shaped us, as much as 30% of human DNA has been determined by this age-old battle with viruses (see here), it isn’t so clear that we needed them otherwise. Just because something shaped us, doesn’t mean that we are dependent upon it. But now we have been at war with these little bundles of blueprint (as in the case of COVID-19 virus a single strand RNA) for ages and will continue to do so.

But to try and find meaning in this, I think is huge mistake. There is no meaning, no purpose, or plan. But the big moral picture is not about purpose or intent, but what do we do with evil once it arrives? This is where God is watching, not that he created the evil as a test.

Most of us have had experiences where suddenly we were in a crisis. We have witnessed the character of those people involved suddenly come to the surface. A few of mine are; 1) getting caught in a blizzard while backpacking on the Appalachian Trial, 2) running out of food in a group canoe trip in Canada, 3) working in an earthquake zone that killed 90 thousand people, the the pro-Taliban were threatening to kill us and there have been others. But in each of those named examples, I noticed how the character that I suspected in people, quickly rose to the surface. The nineteenth century evangelist Dwight L. Moody said it simply, “Character is what you are in the dark.” It is in the darkest hours we should allow the light of our best character shine.

My least favorite people on this planet, and who I think are the most evil, are the lying, money hungry TV evangelists. Jim Bakker is one of the worst. He cares about nothing but fame, money, and sex and to do it in the name of Christ, makes me sick. He was arrested for promoting a fake cure for COVID-19. But the most common practice or should I say malpractice of TV pastors is the association of this evil event with obscure Bible prophecies. In one of my favorite books, The Scandal of the Evangelical Mind, the author (historian), Mark Noll, said;

For those who doubt the continuing domination of this way of thinking among evangelicals, it is worth remembering the Gulf War of 1991. Within weeks of the outbreak of this conflict, evangelical publishers provided a spate of books featuring efforts to read this latest Middle East crisis as a direct fulfillment of biblical prophecy heralding the end of the world. The books came to various conclusions, but they all shared the disconcerting conviction that the best way of providing moral judgement about what was happening in the Middle East was not to study carefully what was going on in the Middle East. Rather, they featured a kind of Bible study that drew attention away from careful analysis of the complexities of Middle Eastern culture or the tangled twentieth-century history of the region toward speculation about the most esoteric and widely debate passages of the Bible. Moreover, that speculation was carried on with on with only sight attention to the central themes of the Bible (like the divine standard of justice applied in all human situations), which are crystal clear and about which there is wide agreement among evangelicals and other theological conservative Christians. How did the evangelical public respond o these books? It responded by immediately vaulting several of these titles to the top of religious best-sellers list. (pages 13-14)

But this is the time for real Christians to show love. To care for our neighbors. To not give up hope. To be diligent to avoid spreading the infection. I see me fighting my cancer as in a face to face battle with pure evil. Fighting the COVID-19 virus is a pure form of fighting evil too because the virus was not something created by God but intends to bring destruction to God’s wonderful creation. The virus is our enemy and the enemy of God. It has no intent but to harm us.

Mike

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We have all heard the chatter about the meaning of all of this. It may appear in causal conversations, in social media platforms, or from sermons. I predict before the end of this year, there will be books written explaining, not from a scientific but a philosophical or religious viewpoint, why the COVID-19 pandemic happened. We had the same experience in this country after 9/11 and all other big news events. I wanted to address those religious or philosophical considerations now. This is consistent with my other ramblings about fate or cause and effect and even miracles. In my last post, I touched on this topic but it got me thinking even more, plus I came across several other sermons, comments, etc. which I found very disappointing at best so I felt the need to address this more directly.

For the atheists the COVID-19 pandemic doesn’t beg for an explanation about meaning. For them, and any scientist who sees the universe as a closed-system (where natural laws control all events) there can be no meaning just a sequence of biological events following the laws of biology, chemistry, and physics. Certainly, they can and should study these sequences with the hopes of interrupting them and reducing human suffering in the end. But they would never, logically, look for philosophical meaning and if they try to inject meaning, they are cheating.

As I’ve said before, my conversations with pantheists are limited, but from what I understand, most would see this pandemic as under the control of the god-force and the suffering is the result of our over-involvement in the material world (rather than transcending it). They would hold to the belief that all these things will work out for good in the end.

Most of my thinking and study is related to the Christian perspectives because, as I said before, I spend a chunk of my early life in the evangelical movement and I am often thinking about how that movement approaches life issues, including the errors we made then and they make now. I still consider myself a Christian but certainly not of that mold and am often a critic specifically of the American white evangelical subculture.

I usually lump the Islamic view in with the Christian because of similarities. Actually I see a lot of similarities of the radical Islamic people I’ve talked to and the conservative American Christians, like being attracted to conspiracy theories to explain things. But there are some differences.

The Evangelical Concept of God

I profoundly love history especially the history of western civilization and Church history. I could start to write here and go on for pages and pages but I will resist that temptation. But history sheds light on what we think now and why we think it.

The evangelical has a concept of God that has four major legs. Imagine these are the legs of a throne on which their God sits.

Omnipotence

The first leg is that God is all-powerful or what we call omnipotent. This requires no explanation except to say that this leg is closely braced with the next leg, sovereignty.

Sovereignty

The evangelicals take omnipotence further to say that God is sovereign in all things. What they mean by this form of sovereignty is that God is a profound micromanager, that NOTHING happens unless he so orders it or at least consciously allows it for a specific purpose. If you don’t believe me on this, I challenge you to walk into the vestibule of any evangelical church (in the pre-quarantine days) and say somethings like, “Man am I unlucky. I threw my back out yesterday and neither me nor God saw that coming.” You will be immediately admonished (unless they are just being kind because you are a stranger and visitor).

A great king can have overwhelming power, but may not micromanage his kingdom but the evangelical God does both. We see many examples in history of both kinds of kings. In the evangelical view there is no natural course, no fate, no natural laws that govern, and no luck. To question that position, to them at least, seems to question both legs, sovereignty and omnipotence and the throne totally collapses.

I must add that even some evangelicals make exception to this, what I will call the “Job clause.” This is where they see God allowing evil to play out, and that evil comes from Satan’s directive. They would explain this situation as where God allows this evil as a test of the human where the human’s obedience during the trial of evil proves their faithfulness to God.

Benevolence

The next leg to this throne is the concept that God is totally loving toward humans. That every action of God must be defined in the terms of this perfect love.

Goodness / Justice

This last leg is the concept that God is also perfect in his goodness, applying perfect justice to all situations.

So, when you have an evil event in the world such as this pandemic, described as evil because of the suffering it causes, the evangelical faces a real dilemma and a tension starts to form between these four legs, and the throne starts to wobble.

The rise of the COVID-19 is one of these worldwide waves of evil. So, to support the four dimensions of their concept of God, they have to assume that;

1. God created this terrible virus (see the cover photo above where God is doing just that) because he is omnipotent and sovereign.
2. Despite God creating this horrible evil, he still loves us and is perfectly just. Therefore, the suffering that we experience is related to either our own sin, God using to test or teach us, or Satan’s attack (see the Job clause).

While the four-legged concept of God is what evangelicals say you must believe to be a real or good Christian (many have told me, even here on this blog, that I’m not a Christian because I don’t hold these views), it creates an illogical tension that is unsustainable.

I’ve met countless people who left Christianity when they saw the collapse of this throne under the weight of a personal crisis. As a cancer sufferer, I hear so much evangelical bullshit about cancer, for example it is God’s gift) and if I didn’t know better (having taken a decade to think this through after my first major crisis thirty years ago) I would leave Christianity for good because of it.

Before I close this topic, I must look separately at one other approach to suffering by the American evangelical. It mirrors the “Job clause” which I mentioned above but what I will call the “End Times Mentality”

In summary, starting in America (with some British influence) in the mid 1800s, a brand new theology emerged within Christianity and that was forms of dispensationalism or “we are living in the last days” mentality. Note, if you were a student of Church history, you would see that this theology was not part of the Church, including the great theologians and Church fathers, for the Church’s first 1800 years of existence.

This new theology was an idea created mostly by a con-artist lawyer, turned armchair theologian, Cyrus I. Scofield and solidified as part of American evangelicalism in the early twentieth century’s development of the “Fundamentals of Faith,” what became “Fundamentalism” and then eventually “Evangelicalism.”

Now, you can’t have any conversation with an evangelical about evil in the world without them quickly reference this ideology by saying things like, “Well, we are living in the last days,” or “It’s all going to burn,” or “Jesus is returning soon” or worse yet, link it to some obscure prophecy in the Bible.

So, What is the healthy Christian View?

When I was an evangelical it was paramount that we were certain in all things theological. This was especially true in the area of God’s character. I mentioned this story before that we had it drilled down to the point that we knew what color of underwear God favored that we, men, wear. It was white. Tighty-whities to be precise. And God didn’t like poop stains in the back.

This boxing in of God reminds me when I was a little boy and I came up with the idea of catching a lot of fireflies and putting in a corked test tube. I thought I would create an eternal flashlight, that never goes out. But there were two problems with that. First, the light was too dim and faded. But the worst one, which I discovered the following morning, that even fireflies needed oxygen. You can’t box them in.

Now, I love meeting someone who says to me, “I have no clue what God is like because he is the great unknown or unknowable mystery. He is the other. He is so, so big, that my mortal human brain can’t get around him or define him.” This reminds me of where God describes himself as “I am” to Moses. If I remember my Arabic correctly, the word “Allah” has its roots in “The, The.”

So I will share the truths, as philosophy demands (too complicated to explain here) and scripture suggest about God when we explain horrible things like the COVID-19 virus pandemic. . . or the atrocities of World War II for example, or any war. You can hold the belief that God is good. You can hold the view that God is just and as scriptures tells us, loving with a perfect love. You can even, and must, also have the view that God is omnipotent because the moment he (I could as easily say “she”) that God has less power than something else, then the other thing becomes god. Actually, you must say all these things are true, otherwise the whole throne metaphor would collapse if you removed any of those.

However, the only way to relief this tension of the forth leg (sovereignty) is to dissolve the necessity of God being sovereign to be God. Now, before you start writing your e-mail to me, telling me that I’m going to burn in hell, let me explain what I mean by this term. I already know that if I explain it, I will still be misunderstood by someone in the spirit of “unorthodoxophobia” or as my friend “Headless Unicorn Guy” likes to call it, “Group Think.” If you don’t think like the group thinks you should think then they think you stink (my paraphrase).

I started my religious life as a Southern Baptist in the Bible belt. They had a significant amount of “sovereignty of God” woven into their theology. But then in college, I became a card-carrying Presbyterian and have remained once since. Now John Calvin, the father of Presbyterianism, wrote the book on “sovereignty.” We had a God that had to manage. . . well, I’ve already talked about our underwear so I can’t think of an example that showed our God to be even more of a micro-manager. I will mention, and I’ve mentioned this several times, about one of my Presbyterian / Navigator (para-church organization) friends, Owen, who jumped in front of a freight train just to see if he could escape God’s deterministic, puppeteer strings. Owen was a great man, and he died that night. Good theology, or the lack thereof, does matter.

The Problem of Evil

But to deal with evil in the world, and to keep our sanity, we must allow for cause and effect, or a natural law, running its course without purpose or intent. If we hold all the three “must beliefs” about God, which I mentioned above, we must also allow God to have the choice (very, very different than him being impotent) to let the laws to work themselves out without him choosing to interfere. These laws include the laws of physics, chemistry, biology, and psychology.

What I mean by psychological “laws” is that if you take a child and emotionally as well as physically abuse them for years, the natural psychological law would mean that they will, most likely, have issues as an adult. To say that God made them that way, a sociopath, or whatever, would be ignoring the fact that the laws played out without any big purpose or intent by God. You can also not have to blame the victim for their flaws or rearing.

These things can play out for good or bad. For the good, think of the example of the kid above but replace the abusive with loving, nurturing parents. So, this is a world that is full of the wonderful and evil.

Christian-theological term for the above is “The Fall of Adam.” Within that theology, I don’t want to argue that here, is where humanity turned against God and a curse came over the earth where there was the original good stuff, but now some evil sprinkled over it. . . you know, things like my damn cancer! So usually not the responsibility of the individual but of the collective failure. Of course there is evil that is the responsibility of individuals, but that’s another story.

COVID-19

While the COVID-19 virus has no intent, or even consciousness (it is really no more than just a chunk of RNA or DNA with a protein coating or package, see here) it plays by the rules of chemistry and biology. If you know physics, viruses are the equivalent of particle-wave problem in quantum physics played out in biology, meaning that when they are observed in one way, they are life and in another, they are non-life.

A virus cannot reproduce on its own and that is why it eventually becomes inactive without a host. The way it reproduces is that the protein shell attaches to a living cell like ours, and injects its bundle of RNA or DNA into our cells’ blueprint. Part of the blueprint written on that fragment of RNA or DNA is how to reproduce the virus and spit out more of it into the local environment of the host (or outside the host in the example of a droplet from a cough).

Because these virus are not benign when they hijack our cells, over millions of years, our immune systems adapted to blocking them when they enter our body, not allowing them to do their dirty work.

But it is like a game of chess. The viruses also adapt, for reason too complicated to explain here, the RNA-based viruses mutate easier than DNA (my son Bryan can explain how if he wants). The COVID-19 is a single stranded RNA, so it mutates relatively easy. Smallpox is a DNA virus the same vaccine is good for generations and we don’t have to worry, too much, about a mutant stain of smallpox coming on the scene.

So a virus can exist and multiply in one host. That host may have built up a resistance to the virus over the years, which allows it to survive but not do a lot of damage (I saw on the Discovery channel the other day, which means it may or may not be true, that 60% of all skunks in LA are infected with rabies, but it does not harm them because they have built up a resistance). They think the previous host to the COVID-19 virus was chickens in the market, but the chickens got it from local bats. But then other species, like humans in the case of the previous version of corona virus family that COVID-19 came from, would not even allow to set up house keeping in our bodies.

But the virus is constantly playing the roulette wheel, trying out new combinations that will allow it to sneak back into the resistant species, under the radar. COVID-19 has already mutated since it re-enter the human population last year and there is a L sub-type and a S sub-type. The L came first and then mutated to the S. Most of the original infections were from the L but now most, especially outside of China, are the S strain. My son, Bryan will let me know if I got this wrong.

Sometimes, because the virus is like the fox getting back into the chicken house after a long absence, the body’s immune system is really pissed and reacts so strongly that it is the immune reaction that causes most of the damage to us. From what I understand, and I could be wrong, this is how the COVID-19 virus causes structural damaged to lung tissue.

This is getting long so I will pause. I will come back with just one more posting as a summary about the theological discussion of all of this and try to tie this together.

P.S. Personal Update-Follow up (if you are still interested after that saga above)

So, I had labs yesterday and met with my oncologist today. He has agreed to apply for the outrageously expensive oral chemo tablet. Maybe the insurance will cover it as they seem to be more generous in these days of COVID-19 crisis. It has the potential of being at least as good as my present chemo, but with far less side effects. I pray that they will cover it.

I don’t worry over my labs so much anymore as there has been clear evidence that my cancer is in remission and my kidneys are slightly improving or stable. However, I was blindsided today when my major kidney labs (Creatinine and BUN) came back much worse (well .6 for creatinine). My oncologist expressed great concern as he came through the door. I was suddenly, going from worrying about catching COVID-19 at the hospital, to being damned depressed. Bad news, as we all know, is one thing but when it blindsides us, it is much worse. I felt the tears start to build as I sat the two hours waiting on my chemo (we are doing my old, side-effect “enriched” chemo while we are waiting on the insurance company’s approval for the new one).

However, I’ve spent some time studying my labs since that visit this morning. In medicine there is a saying that if something doesn’t smell right, then you need to retest. My bad creatinine and BUN doesn’t smell right to me as a PA and it is more than just wishful thinking. I won’t bore you with the details here, but for the sake of those who are interested and in healthcare, it was the fact that my other renal labs, such as electrolytes, where the best they have been since I’ve been sick. Also, the evil proteins that damaged my kidneys in the first place are almost non-existent. Lastly, my CBC looks the best it has and my hemoglobin suddenly jumped in two weeks from 11.5 to 13.2 (almost normal). So, (and there are many other life factors that support what I’m about to say) I believe that my creatinine and BUN when up from me cheating and having a steak dinner the day before, exercising hard, and being quite dehydrated the day of the labs. But the next test in two weeks will tell if there is a trend.

I want to close this by thanking all of you who reached out and offered us your homes for Denise to re-locate to. It is a hard decision. I am now disinfecting the entire house every day. Denise is coming in through the basement door, depositing her clothes directly into the wash machine, washing her hands, and going straight to the hot tub. The CDC has some evidence that a hot tub with high temperature setting and adequate bromine, deactivates COVID-19 from surfaces.

Please, everyone stay safe and take the precautions seriously. I am grateful for you in essential professions and keep working. I am so sorry for those who have lost their jobs or income. Don’t go hungry! We are in this together and what is ours is yours. However, regarding the “markets” (not The Market as in the local grocery store) can all go to hell as human lives are far more important than money, at least that’s what Jesus said, but what did he know.

Mike

As the title implies, I’m going to combine some update on my health information with some ramblings about what is on everyone’s mind, the COVID-19 pandemic.

Good News

I will start with some good news and that is I got another lab back on Tuesday, a 24-hour urine with a protein electrophoresis. The point of that test was to look for the bad cancer proteins in my urine. While a year ago, such proteins overwhelmed and virtually killed my kidneys, it was too small of an amount to measure in this most recent test. So, in summary, my most recent cancer tests have all shown that I’m in remission, to the point that if I had walked into my doctor’s office today and had these tests done, he would have to say I don’t have cancer. However, I do. MM is notorious for appearing to go away or at least into remission and then to raise its ugly head again. For that reason, I must be on chemotherapy for a total of two years after my stem cell transplant. That means I have 18 more months.

Chemotherapy

So, this brings me to the problem I am having and that is my chemotherapy. I started out in September doing fine with almost no side effects. Over time the side effects have worsen. The best way to describe it is like having the stomach flu, but it never going away. I’ve had this since the first week of December with cramping and diarrhea throughout most days and unbearable chills.

As I mentioned a couple of posts ago, because I was in remission, we were going to take 5 weeks off and let my gut rest. During those 5 weeks I did notice a slow improvement, where at the end I was having those symptoms every second or third day, rather than every day. I think I understand much better, those of you who suffer from Crohn’s disease.

Ten days ago, we restarted the chemo plus added two more drugs to counteract the side effects. It has not help much as my side effects are growing again.

We have the option of trying a different chemo. Mine had a drop-out rate in the studies of 45% due to side effects. There is one that had a dropout rate of 2%. That one sounds quite appealing but with one catch. My drug is $3000 per shot and I get two shots per month. The new one is a pill and it is, you better be sitting down, $10,000 per pill! I have to take three pills per month, so a monthly cost of $30,000. This is insane!

This coming Tuesday we will decide what to do. But right now my quality of life is quite low due to feeling sick all the time.

Quarantine

We are all in this together. However, while my risks are much higher than most (certain death if I got the COVID-19 infection due to my bone marrow transplant, kidney failure, and chemo; plus a wife who is in the highest risk profession of catching the virus, nursing), this period of quarantine is much easier for me than I think it will be for most of you. The reasons are, 1) after my bone marrow transplant I had six months of quarantine and learned to live that way, 2) we have a lovely place, three acres, on a lake to be quarantined. If I were in town, I might go batty. Part of my quarantine last summer was in a very small apartment in Seattle and I felt like I was in prison.

As I alluded to above, my quarantine is complicated by Denise’s profession. For one, I see less and less of her and feel like a hermit now. But more importantly, she puts me at high risk for catching the infection, especially as Island Hospital starts admitting COVID-19 patients. I certainly don’t want her to get sick and there is no guarantee that she would survive if she did, but it would be a certain death sentence for me if she brought it home. She feels quite committed to being at the hospital during this crisis. We are looking at options including her moving out for a month or so, or me finding a remote cabin to live in for a while.

This year I came to terms with the idea of death. I have fought hard to stay alive for the sake of Denise and the kids, even though at times I had no desire to live because of the loss of quality of life. Even now, there are days I think getting the COVID-19 infection could be my ticket out of this nightmare that I’m living in. But it is the process that frightens me. I became acquainted with profound suffering last year and I don’t look forward to that again.

My greatest prayer is that my chemo symptoms would go away, as well as my constant twitching. Then my will to live would be much stronger.

I WORRY ABOUT YOU!

We don’t know how this COVID-19 pandemic will end. You have seen the best-case and worst-case scenarios. Right now we are living in a Alfred Hitchcock world, but under the worst-case scenario, it would be a Stephen King world. Unless you work in health care, I’m afraid that you do not understand how serious this can be. I don’t leave the house much anymore, but I took a long drive on Tuesday. I watched how people were interacting in Anacortes, Burlington, Mount Vernon and all the way up to Lake Diablo. They were not taking the precautions that need to be taken to prevent the spread of this terrible disease. For one, the key pad for typing in your PIN number on gas pumps and at cash registers is a petri dish of germs. The corona virus can live on the surface of that pad for many hours. So, if you touch it to type in your number, you are picking up germs from the last 50 customers. If you touch your face with that finger, then your goose is cooked. Wear gloves or clean that finger immediately and well with sanitizer.

Please stay safe! Hugs and handshakes are not appropriate! Keep at least six feet apart from others and remember that the virus can survive on hard surfaces for many hours, even days.

I feel especially bad for those of you who have lost business or their jobs over this.

One Last Word on the COVID-19 Pandemic, a Word Against the Con-artists

I am not sure I believe in a literal Hell anymore. However, if there is one, it will be a place for those who exploit others during times of crises. Hording hand sanitizer and selling it is a minor of such offense. The worst are TV preachers. Jim Bakker was selling a cure for COVID-19. Shameful! But he has spent his life doing shameful things.

Paula White, Trump’s personal “pastor,” is often on TV lying and begging for money (millions of dollars isn’t enough for her greedy soul) and now she is raising money (for herself) but claiming it is to stop he coronavirus see here. Yeah, Hell was designed for people like her.

However, the more common type of such exploitation is the, (sometimes well-meaning, sometimes not), pastor who tries to find meaning in events like the COVID-19 pandemic or even 9\11. They are totally ignorant about human history and try to tie these things to obscure prophecy. I will stop here but just to vent about this evil practice.

Mike

Once again, to break from the trend a few months ago, I have mostly good things to report.

I was able to take a 5 week hiatus from chemo due to my cancer being in remission. During this break, my side effects from the chemo, which were getting way out of hand, slowly improved. I went from 4-5 bouts of urgent diarrhea per day to now once or twice a week. My peripheral neuropathy has likewise improved.

On Tuesday I resumed chemo and this time we went from a one drug (Velcade) to a four drug regiment. The purpose of the four drugs is to not only work even better to to mitigate the side effects of the Velcade alone. So, 48 hours later, things are going well. One of the add-on drugs is a high dose steroid, which causes insomnia the first night but I did get at least five hours last night. If the side effects return, we will have to petition the insurance company to allow me to switch chemo to something totally new.

Probably the best news is that despite spending two weeks of traveling, where my strict renal diet was very hard to follow (it is much easier to control your diet when you eat alone), my labs were almost exactly the same. My kidneys are still crappy, but I was expecting them to be worse. This may sound trivial, but it is very liberating being able to expand my diet from just bland noodles and oatmeal to things with taste.

My evil proteins (which the cancer produces) came in this morning and were almost exactly the same as 6 weeks ago. I was expecting them to be worse because of being off chemo.

My oncologist, on Tuesday, said two things that left an impact on me. First of all he called my labs “great.” I had not seen them yet and his point was just what I had shared above, stable. He also said, when somehow we got off on to death again, that “Mike, you are not going to die from Multiple Myeloma but we are going to turn this into a chronic, manageable disease.”

I am feeling so much better than I was a few months ago. I would call how I feel as normal if it were not from my pretty severe anemia, which reduces my endurance. But I do my third climb of Mount Erie this week. It is brutal for me (4 mile round trip with about 1200 feet elevation gain and loss) and I’m passed by younger, healthier people, but it is getting a bit easier each time. I did out-pace Greta this time, who pooped out near the top.

Yes, I am in the very high risk category for COVID 19 virus, or influenza A because of my transplant and cancer. I am taking precautions. However, I do feel my immune system is much stronger than three months ago, when I was constantly fighting bronchitis and skin infections. However, I will follow my team’s advice and avoid public places.

My son, Bryan, just did an interview on Minneapolis community TV. He has a PhD in biochemistry and is working on the technology that very well may be what saves me in the end (CAR-T). I will post a link to the interview here.

I am continuing to write on my novel Ristretto Rain. Writing is such a passion of mine and I feel that this next novel will be my make or break point if I can continue, so I’m taking it very seriously. I had several people here agree to review an earlier manuscript and since then I’ve completely rewritten it twice and will continue to do so, until I have it dialed in. For some writers, they have “writer’s block” where they just can’t think of where to go next. My problem is I’ve always had “writer’s diarrhea” where words and related story branching constantly flood my mind. I get so lost in these stories that I forget what is real at times. Sometimes I think I see one of my characters on the street, and then I remember they only exist in my imagination. This is a gift and a curse as I get too wordy and too complicated in my narrative.

Lastly, tomorrow I have a meeting where we will make one last attempt to resurrect my career in headache medicine. Taking good care of patients is the easy part. The complexities of creating a place to do that is the hard and expensive part. We will see where this goes.

I am sorry about taking too much time here. I will be posting less about my disease now that things are stable and hope to remain so for the future. To come here and share details about a stable problem would lend itself to melodrama and I want to avoid that. Thanks so much for taking this journey with me until this point, through many months I (and my doctors) really thought I was dying, and at the same time I was feeling so bad that I was afraid I would not die and end this nightmare once and for all. Now I have a some hope that I will see another year.

Mike

I really don’t have much to report but just a brief update. I just got back from two weeks of traveling, which I knew would be challenging, while enjoyable. It was great seeing family. I mentioned last time that I was starting to have significant side effects from Chemo, in the form of diarrhea, cramping, peripheral neuropathy, and rash. Because my cancer appears to be in remission, we were able to suspend chemo for five weeks. Boy, does time fly. I restart chemo on Tuesday but this time we are going to add a steroid, hoping that it will cut down on those side effects.

The side effects have improved, but very slowly. It was challenging staying in bathroom-less log home in the mountains and then traveling by plane, but didn’t have to resort to wearing a Depends (smiley face here).

Because of the spreading of the COVID 19 virus in Washington state, not to mention the higher risks of influenza A, I must resort back to “house arrest” where I have limited time out in public, especially places of many people, such as church, plays, ballgames. Fortunately, I live in a lovely place, on a lake, in front of a mountain and it is a fantastic place to be arrested to. I will focus on writing, yard work as weather permits, and staying well. Speaking of which, I’m feeling quite well except for the aforementioned side effects.

My brother is not doing well with his leukemia and I pray for him. I know how awful it is to suffer and I know he is suffering now.

If you want to come by for coffee, you are welcome. The same if you want to help with yard work, or better yet, as soon as I get my boat in the water we can sail around my lake. If I can get my hands on a boat trailer, then we can sail around the sound (if not the world).

My new novel Ristretto Rain, which I love working on, is undergoing another edit (more like rewrite) and I still hope to have it on the market by May. I have many writing projects for this blog which are playing second fiddle to my novel.

Mike

P.S. Jerry pointed out, tongue-n-cheek, that my last post appeared to say that I watch porn 24-7. I meant to say that I have to watch this blog 24-7 to keep losers from posting porn in the comment section. I think you know what I mean and Jerry was just trying to be funny . . . and he was. (wink).

I just noticed further people (or possible “bots”) posting porn on my comment section. I’ve tried to monitor that but unless I watch it 24-7, I cannot. So, I have had to require people to sign in with their e-mail address and then I have to approve their comments before they will show. Please know that I would never reject a comment because I don’t agree with the content (if the content is relative to what I post) but will only block spam and offensive links.