Author: J. Michael Jones

Summary: I just finished my last labs on Monday (1/20/20) and met with my nephrologist yesterday of the University of Washington.

• Kidneys: My renal labs remain terrible, but stable. Last month I slightly relaxed my strict diet, eating one tablespoons of tomato sauce for the month, a few raisins in my, otherwise plain, morning oatmeal. Despite that loosening of the diet, the renal labs (particularly the potassium) was not worse, but slightly better. This is a big help in allowing me to have more food choices.
• Feeling: I am feeling far better than I was even in October. Most of that has to do with my anemia improving. It is still present and appears to be stuck where it is (Hemoglobin of 12) but is far better than September when my hemoglobin was 8. I can’t imagine how good I would feel if my hemoglobin was normal (14+) again, I think I would be able to fly like Superman. My side effects from chemo (stomach flu type) are still present, constant, but milder. I’m only having diarrhea a few days a week.
• Neurological: My twitching has always gone through unexplained cycles (while never going away). The good cycles have been so low (3-4 places twitching rather than 10+) that I think this whole horrible neurological syndrome might be getting better, very, very slowly.
• Cancer: I was expecting to announce this morning that my cancer was in remission (based on the indirect measurement of the bad proteins). My decline in protein had been steady (see the graph below) and based on the result last month, we were expecting them to be normal this morning (which would be below 26). However, to my great disappointment, the trend was bucked and the bad proteins are slightly worse. That is very discouraging after having high hopes for days. In two weeks we will do a direct measurement of the cancer via a blood test. We do this every 3-6 months. Please pray that the cancer load would be low.
• Career: I am attempting to return to work, although this decision is not in my hands completely but will be made in the next couple of weeks. That could be me working part time back at the Island Hospital headache clinic, or, I also have an opportunity to work for Peace Health neurology, which would mean a drive to Bellingham or Sedro Woolley.
• Writing: There is so much I would love to write here in my blog. However, I have been working on a novel for three years (with a working title of Rock Harbor, It is a semi-romance novel). The manuscript was put on the back burner when I got sick. I restarted the novel in September and finished my first writing of it about three weeks ago. I am now going back through and editing (I write in layers, fixing typos, adding narrative color, etc.). This is a labor of love and is all-consuming my writing at this time.

 

I can share more candidly now that the friend that I lost due to a drunk driver, was also my oncologist. I could not say more earlier because he was still on life-support. He was 51 and left three children. I can remember conversations with him about mortality. . .  my mortality. I was 64 and was asking him if I would make it to 65. He said, “Why not shoot for 70?”  Never, in the most distant corners of my mind did I think he would be taken long before he turned 64.  It is profoundly sad that he did absolutely nothing wrong and a careless drunk driver killed him.

Today is also my nephew’s funeral. I’ve had to bury two nephews this year, one on my side and this one on Denise’s. For the sake of confidentiality, I wish I could say more. But the family is in deep mourning, actually both Dr. Nestor’s and my nephew’s family. Pray for grace that they can get through this day and the days to come.

My labs are back and in summary, a few things are slightly worse, a few things better so it comes to the conclusion that my kidneys are horrible, but stable. My potassium (which poses the most immediate danger) is modestly better which gives me a little more freedom in food. Certainly I can’t ever eat an orange or banana again, but I might try to put a little bit of tomato sauce on my spaghetti, about once every two weeks.

I did not mean to write this as I have so much on my plate to do right now, however, I’m writing from a place of impulse. I will also type fast without the opportunity to proof-read and this will not be “well researched” either, as I do not have the time. I have written a lot about suffering, especially back when I was doing so much suffering myself. But this is a different twist. I will also be clear, this is not about me as my suffering is much less now than it was in the spring or fall of this year, but I will draw from some of my experiences.

I will not say much about the stories that prompted this writing but to say that Denise and I learned Monday that a friend of ours was brutally injured by a mindless drunk driver on Sunday afternoon. He was minding his own business and, due to no fault of his own, this maniac destroyed his life and that of his wife and four children. We lay awake throughout the night on Monday thinking of this friend’s family and work colleagues.

Then, with little sleep, we had a call on Tuesday morning, at about 5 AM to tell us about another tragedy, this one within the family and equally as terrible, if not worse.

In the wake of these stories, I once again must think about how we deal with tragedy. I will mostly speak from the Christian perspective, although I have had long conversations with Muslims about fate and suffering. I’ve had only one conversation, that I can remember, with a Hindu about the same.

I think we get this wrong most of the time and I wanted to explore why. I will say, for the sake of time, that I found the Muslim and the hard-core evangelical positions to be very similar, although in my Muslim friends concept of God, he is even more in control than the Christian concept (if that were possible) AND, my Muslim friend (I am thinking of just one right now) would say that personal tragedies must be traced back to sin, usually the sin of the person who has experienced the tragedy or sometimes it is the sin of the family. They reach this conclusion to maintain their view that God is all-powerful, just, and merciful. So, a tragedy must fit in with His justice, as a punishment for sin.

Having said that, I will focus on some of the problems in our Christian theology when it comes to suffering and tragedy.

If you look at the simple, original Christian theology, it would state that God is all-powerful, but the wonderful, material world, which He has created, is broken. Its not right. Therefore, within the world are injustices (victims of tragedy may have no fault in the disaster). Therefore, innocent little babies are born with malignant brain tumors and never know one hour of feeling well, the way we were intended to feel, in this world. My Muslim friend would try to point to someone in the baby’s family who had sinned against God. It is always easy to find sin in every family because we are all full of it. But, in my conversations, this is where the dealing with tragedy diverges. In my one conversation with a Hindu, he said that both what we call evil and good are part of the same universal god-force and in the end, they will merge back to what we see as nirvana.

But now I will be critical of much of Christian thinking. While I love the theology of Jesus of Galilee, I’m not a big fan of add-on theology that has accumulated down the ages, like barnacles on a ship’s hull.

I will speak of the American white evangelical community, because that was the community, I know the best. In their theology, they strive to hold the following doctrines:

• God is all powerful (like the Muslim God)
• God is omnipotent (and they translate this to God controls every event in the world like a puppeteer).
• God is benevolent

Now the problem lies in the process of trying to weave these factors together into one cloth. When a tragedy occurs, and you want to hold all three of those dogmas, you reach only one conclusion. God caused the tragedy for some benevolent reason, which our frail minds can’t understand. So, the healing of our broken emotions come from accepting this is God’s loving will and trying to understand God’s perspective in it.

The most ridiculous account, in my life, with this spiritual and emotional contortion was when the head elder of our evangelical church, years ago, (where I was also an elder), told a man who had accidentally cut off his toddler’s head with a mower, that it was God’s loving plan for him and his wife. It was during the early stages of my leaving evangelicalism and one of a thousand points of dark, which caused me to eventually leave.

One of the ways the early Church (mistakenly) dealt with issues like suffering was by leaving the metaphysical (look that word up if you need to)  view of ancient Hebrew and Christian texts (aka known as the Bible) and replacing with a view from Plato. His view was that this material world was only a shadow of the real world, which the Church declared was the spiritual or heavenly. Therefore, life on this material world was like the waiting line to get on a ferry (for us Washingtonians) and the real world was on the other side. So, suffering didn’t matter.

I still hear plenty of echoes of this type of Greek thinking in my Christian circles, especially in my old evangelical world. Attitudes such as, “It doesn’t matter if this great tragedy happened, the pain is not real, its all going to burn.”

The pain is real! Profoundly real because we are human beings living in the wonderful material world God has made with real, horrible, consequences of general evil.

I’ve shared this story before but I heard a pastor from outside London, England share the greatest mistake he ever made was when a young lady with three small children, learned that her husband had been hit and killed by a drunk driver on the way to work. The first people from their church who arrived at her apartment found her in great (as you would expect) distress, screaming and shouting things like “God, where the hell where you!?”

When this young pastor, just starting his ministry, heard about the things this young widow was saying, he loaded up his briefcase with books on Christian apologetics and books with titles like, “Where is God when it Hurts?” His goal was to go to her apartment and to confront her with the errors of her theology… remember, her husband’s corpse was still warm at this point.

He said, looking back, he wishes with his whole heart that he would have gone over with only a briefcase full of Kleenexs, to spend the next few days holding her and crying with her… because the damn suffering is real!

I observed last spring when I was at my greatest suffering, how awkward my talking about suffering made some people feel. The more “religious” they were, the more uncomfortable they seemed to be. I’m not talking about where I wanted to sit for hours and whine about my 24-7 nightmare, but to just mention it. It was like attending a highbrow reception, wearing a tux, sipping champagne and me cocking up my leg and farting really loud. That’s how any “negativity” was handled. I could tell they expected and wanted me to smile and say, “Things are just dandy because Jesus in in control!” They were expecting to attend my funeral in a few weeks (remember, in that theology this world is only the ferry line) where they could say, “He was a great Christian. He never complained.”

There is a time for weeping! There is a time for sorrow! There is a time for raging against the injustice of this world, without hating this world. To acknowledge the pain is no dis-service to God, I think He understands the pain the most. Then we have to work to improve the injustices. I believe that God loves this world (He said so) and we are His workers to bring justice within brokenness. We must fight to end drunk driving. We must fight to make mental health services readily available and without stigma. We must find cancer cures. We must fight to end suffering and make tragedies rare.

 

 

ESSENCE:

• I have my next set of labs (24-hr urine/ serum renal function) to monitor my kidney function, starting this morning. I am so close to the edge, please pray for good results. If my kidneys are just a hair worse, I would be in big trouble. If they were a hair better, it would profoundly improve my quality of life.
• I’ve feeling much better than I was just a few weeks ago. Thank you for your prayer and support. I suspect my anemia is the same or better based on how I feel. I will know more Tuesday.
• Based on the previous trajectory of my cancer labs, I should be in remission about now. We will know more in 3 weeks. The cancer, itself, causes me no symptoms and I would feel great if it were not for my significant neurological damage and anemia from renal failure and some modest but irritating side effects from continuing chemo.
• As I was typing this, I just got word that my cancer doctor was in a very serious accident last night and may not survive. I won’t share his name, but please pray for him, his family (others were also injured), and his recovery. While his personal welfare is my greatest concern, I, like many of his patients, will have to scramble to figure out how to continue our care.

 

NITTY GRITTY DETAILS (If Interested):

The Cancer

If I only had an incurable bone marrow cancer, I would be on top of the world. I know that sounds strange, but the MM has never—directly—caused me any symptoms.

While we will not be doing tests on my cancer at this juncture (we will in about 3 weeks) I suspect that, if it follows the previous trajectory, I am in full remission at this point. I am deeply grateful for that. This is after a year of a profound struggle in the murky trenches to get to this point. I was devastated when I was informed in September that my bone marrow transplant was a complete failure. I was feeling so horrible (physically) at the time and I had fought so hard to survive the bone marrow transplant, that at that juncture, I considered ending my life.

However, now it appears the transplant has done something good. All spring of 2019 I was on an intensive chemotherapy (three drugs twice a week) and we never could get the cancer in full remission. Now I am doing just one of the drugs every two weeks and I am in remission. I am having some side effects from the chemo, that I wasn’t having a few weeks ago, and I pray that will pass because it is a problem. Thank you for your prayers and support.

The Kidneys

I remember a couple of years ago taking a hike up on the Rosario Head with Greta, my Saint Bernard. While Greta doesn’t hesitate to chase a pack of mangy coyotes off our property, things like her own shadow, a vacuum cleaner, or a balloon popping causes her to have a nervous breakdown. She also has no fear of heights and I think it is because she has no depth perception. I do think the girl needs glasses. If you are not familiar with the Rosario Head bluff, it is about 80 feet or more drop into the icy sea and kelp bed. When I was on top that day, Greta kept wanting to walk right off the top of the cliff and I had to keep pulling against her 120 lb frame to keep her back from the edge.

Now I have some respect for heights, although I have done some rock climbing and mountaineering. However, when I have a good rope and harness on, attached to a good anchor (which could just be another climber) I feel safe.

On that day, there was a gusty wind at my back, and I was just getting ready to give up on the hike and head back down to the low spaces because of the effort required to keep Greta away from the edge. That was until a burst of wind ripped my hat off my head and over the edge of the cliff. I wouldn’t have thought much about it except it was a really nice, Orvis, base-ball style, oiled-cloth, water-proof hat. Retail it is about $70, although I think I got this one from eBay for about $10.

I thought I had a glimpse of the hat over the edge and I got down on my hands and knees (remember I’m still attached to a 120 lb dog who, rather than being like a good climbing partner who wants to anchor, this girl desperately wants to jump off the cliff, taking me with her) and I crawled to the edge.

Sure enough, there was my hat caught on a root just over the edge. If it wasn’t for Greta, it would have been a piece of cake retrieving it. However, I had to plant my foot in firmly against her chest while holding on to her leash (so she didn’t run in the other direction) and push to keep her away from the edge, while, at the same time, I crawled to and over the edge to get my hat.

This is what I feel like with my kidney functioning. I don’t know how many times I have had doctors feel that they must tell, “Your lab tests are terrible. Your kidneys are crap.”

“Yes, I know!” I say. They don’t realize that I follow every detail of my tests like a monk trying to study and transcribe an ancient manuscript and there is no reason to scold me, unless they know something I should be doing to improve them… and they never do.

My kidneys are roughly function at a 30% of what the bare minimal functioning of kidneys should be. While it is limited what I can do about that, I have followed a stricter and stricter renal diet. After going on an extreme diet in November, I was so disappointed to see my renal labs get even worse. I have remained on this diet, which is vegan and avoiding diary, avoiding most vegetables, nuts and all fruits except apples; which leaves basically rolled oats, white bread and plain pasta with no seasoning or sauce. Then, my latest renal labs, 2 ½ weeks ago, were slightly better. I must also limit my exercise because exercise increases toxins from the breakdown of proteins.

I ask for prayer. While a cure would be nice. If my renal labs just improved by 10% it would profoundly improve my life. I could some day eat a tomato product again! That’s all I’m asking.

Neurological Problems

My first symptoms around Christmas of 2019 were neurological. I suspected I had ALS and was prepared for that terrible diagnosis. I was totally surprised when it turned out I was in renal failure; my kidneys having been taken out by the bad proteins being produced by the cancer. While neurological symptoms are not uncommon with renal failure, the nature and severity of mine has been quite unusual. I know that I’ve tried to describe this before, but it is twitches from my tongue, face, down through virtually every muscle of my body. It is like worms crawling beneath my skin and deep inside my body that never stops. It was so intense that for months I could not sleep and was exhausted. In the spring of 2019, along with all the other problems I was having, I was praying to God to allow me to die in my sleep to escape this nightmare.

While the kidney doctors, from the beginning, knew the neurological symptoms were from living in renal failure, however, they didn’t know what to do about it or even wanted to talk about it. The Seattle Cancer Care Alliance knew that it was robbing me from any quality of life and was pushing me toward ending my own life as a way out.  They got me into counselling and tried their best to address the horrible symptoms. Unfortunately, nothing we tired worked.

Because the neurological symptoms, while never going away, run in cycles I cannot tell if it is slightly improving or not. It is better than the very beginning, but it seems quite steady for the past 9 months. One of my frustrations has been getting my doctors to care about this problem because it is so odd. I am seeing a neurologist now and while he as only guarded optimism, I hope we can find something to help.

 

 

I have taken a sabbatical from writing my articles, (although my last one is almost done), because I just finished my novel Rock Harbor (tentative title), which I’ve been working on for three years. I am busy doing my first pass-through editing of the manuscript and haven’t had the energy to come back to this topic. By the way, it is a romance novel, (well, sort of), and I hope you will see improvements in my writing since Waters of Bimini. But I did stumble across an interesting article from Politico today, that contradicts my premise that we are in a post-truth or post-fact society. It is worth reading this short article for a more positive view and as a counter-balance to what I’m saying. You can read it here.

In the spirit of the new year, I’m taking a side bar from my writing journey into the loss of TRUTH in the west.

I make no qualms about the fact that I don’t like Donald Trump. In fact, I can’t remember how long it has been since I’ve struggled so much not to hate someone. However, as I explained before, this is not political it is my personal distain for the man’s character. I’ve spent most of my life as a Republican and there are Republican candidates I would vote for today if they were running for president. Certainly, there are several in the Democratic primaries I would support. I am politically independent and never have the desire to be part of any party again, because I see what party allegiance has done in the Trump era to the Republican loyalists, (who have totally supplanted their faith with Trumpism) and what it did to the Democrats during the Clinton era. However, either party can get my support for any given issue or platform.

We are in a country that is severely divided among political ideologies and it is a bit scary to think how this will probably get worse during the 2020 campaign. There are so many evil powers at work to divide us and I hear the hatred boiling over every day.

At this point is where this side bar intersects with my general talk about the loss of TRUTH. As I’ve described, in a previous article, one big change that has come to the American society is the fragmentation of our source of information. In the 1960s (and before) the major news outlets were fully trusted to serve up each day the most important news. It was a professional standard in those days not to put a political bias into the news. It would have been unheard of for Walter Cronkite to twist the news to support his personal political views and to scream and cry while doing so.

Now, this is not to say bias never happened. I’m sure that the major news outlets did things, out of respect of the oval office, such as hide the fact that John Kennedy was having affairs. But I think it was about as far as it goes. I do recommend the movie Good Night and Good Luck as a window into that era where the news sought to be independent of political storms.

These days, thanks to many issues that I described in the previous note, our “news” is segmented from the far, radical left to the far, radical right. These “niche realities” are present on cable TV, web sites and social media sharing. Once you deviate very far from the center, then there is no longer any intent to educate the public with information. The intent is to selectively pick information and to twist it to support that site’s political agenda. As long as they keep feeding the base what they want to hear, the base will keep coming back for more and followers converts into money for them. It becomes a vicious cycle, always downward. As you move even further along this path, you end of with political entertainment outlets (they call themselves “News”) which fabricates stories completely and then entices their readers to believe it to hold them faithful. I mentioned before that “gnostic truth,” which is a secret truth that only I and my peers have, is very enticing. It makes you feel smart when you know things that no one around you knows. But, to put it mildly, is mostly bullshit.

A Personal Story

I have not liked Donald Trump for decades but during the 2016 election I grew to dislike him even more, based on things he said, especially about Syrian refugees. However, I found myself working in a job where everyone there was a big Trump supporter. To me, and people that think like I do, Donald Trump appears to be worse and more dangerous than Charles Manson. So, it was very hard to understand how good friends, and smart people, didn’t see that.

I had joined Face Book years ago to see photos of my grandkids. I don’t know how FB works, but they were very good about connecting me to many old friends from my evangelical days. Before 2016 I was happy to hear their stories and see the photos of their lives. However, during the 2016 election my FB was inundated by hateful anti-Hillary stuff. For example, a good friend and church leader sending me a GIF of Hillary opening her mouth to speak at a rally and a huge (very real-looking) turd started coming out. Then there were videos being passed around of Hillary personally working with Al Qaeda to have the staff in Benghazi killed, another one of her running a child sex-ring operation, and another video of her and Bill, literally selling assault weapons out of the back of their van to a group of Isis fighters outside of Washington DC. These evangelical friends shared these things a factual and it was clear they hated her guts. At the same time, they were promoting Donald Trump as the godliest man they had ever seen.

With all the above, I felt like my brain was about to collapse and my moral compass was spinning. So, I, systematically started to unfollow people who were promoting most of these things. It wasn’t because I didn’t like them, but it was because I was afraid that they would eventually make me so angry that I would say things that I would later regret. Many of them appeared to already label me as a non-Christian because I did not support Trump. Just like they have labeled me as a non-Christian because I’m no longer an evangelical (as of the past 20 years).

To help my own disillusionment with American Christianity, I did find several anti-Trump Christian groups and joined them. It reminds me a lot of when I was first diagnosed with Multiple Myeloma and joined a MM support group. In the beginning, these groups were very helpful for me to know that I was not alone and that I was not crazy. I had to get out of the MM group because so many of the stories were ending in tragedy.

Soon (and now we are talking about after the election) my FB page went from being flooded with bullshit conspiracy theories about Hillary Clinton and the Democrats, and constant praises for Donald Trump, to dozens of anti-Trump things every day. But either I got tired of it or maybe it changed over time to resemble the pro-Trump people with bullshit stories about Trump having sex with his daughter, Trump fathering dozens of children across the country, Trump being either bribed or blackmailed by the Russians to do their dirty work, somewhat like the “Manchurian Candidate.”

I may have fallen for some of these anti-Trump stories and now I regret that. I’ve been called out for posting a story that was later proven to be false. I have started to call out fake stories from my remaining pro-Trump friends and my anti-Trump friends. I have also purged my FB account from those friends on either side that habitually pass on fake or hateful stories. I am still bombarded, from these anti-Trump Christian sites, things that are untasteful as the turd coming form Hillary Clinton’s mouth. It is photos of Trump as a turd or toilet or having sex with Mike Pence. I am trying to block that stuff. I also regret reposting untasteful things against Trump.

How Do We Find Peace?

Romans 12:18 says, “If it is possible, as far as it depends on you, live at peace with everyone.”

1. Select our Sources of Information Carefully

I think the first repentance in this path of fighting the hate is to break our bad habits of going to those channels or websites that promote biased and unproven stories. I had to personally stay away from some of CNN shows (like Don Lemmon) and MSNBC shows (like Rachel Maddow). Now, these shows are only a small step off the mainstream, and I do think Rachel Maddow is a smart woman, but when you watch these programs day after day, it feeds to your own bias.

Now, I check CNN daily, as like the Cheetos of foods, but then I also check those sources that all the experts say are most accurate and unbiased. That includes AP News, NPR, BBC, Reuters, and C Span. Now my evangelical friends have already told me that these aforementioned good sources are “part of the fake mainstream media” or worse, “part of the godless conspiracy against Christians.” One Christian friend said that he would never listen to NPR because it is the “Gay Station.” I’m sorry, but if you think that, it is because you have already succumbed to the bullshit brain washing and frankly you need to repent from that too. These same evangelical friends tell me that they only watch Fox News, which is notorious for bias in favor of the president and promotes hateful and racist ideologies. If you don’t see the racism there, then it probably means they have already won you over. I know what’s on Fox because I used to be an avid watcher and watch it daily even now, before or after I watch CNN.

I will share the chart here shows how biased and accurate news sources are. For the sake of peace, go to the top and the middle to see the world through a clear glass and not through someone’s hate-filled tinting.

 

2. Stop the Personal Attacks.

I was in a meaningful conversation (online) with a evangelical friend about the nomination of Bret Kavanagh. They were claiming that Bret was a good man and the women who accused him of sexual assault were all liars, paid off by the Democratic party. I simply asked him as a serious question, “How do you know this?” to which he replied, “You are nothing but a libard!”

I’ve been called a libtard over and over since then, and it is usually by conservative Christians who should know better. A good intellectual conversation is always healthy. That’s why I don’t hesitate to ask questions such as how do you know God exist? I’ve asked Taliban people face to face what they thought of the character of Osama Bin Laden. But when a conversation turns into mean and hateful insults, all chances for peace and learning end.

I hear from the right that those on the left are “radical socialists,” “communists,” “libtards,” “snowflakes” (which means they wear their feelings on their sleeves and if you aren’t perfectly politically correct, they will be traumatize and cry).

From the left I hear that Trumpers are all ignorant, wife-beating hillbillies. While I agree that Trump says some racist things, some people on the left say all Trumpers are racists and Nazis.

We must take the time to think of the other side as people who are not stupid, who are not morally corrupt and try to learn why they see things the way they do. We should invite them for coffee and try to, respectfully, understand them. We don’t have to accept it, but it is a starting point to being civil.

 

3. Look for Mutual Goals

We have many problems in America, and we can come to a mutual agreement on fixing some of those. But to start this process, we have to stop demonizing the other side and exaggerating their position. I was going to expound on those but I’ve taken too much space for this already.

 

Infrastructure

Immigration reform, respectfully controlling immigration without demonizing the people

Gun violence

Endless wars from “nation building”

Homelessness

Un or underinsured

Student Debt

Global Warming and the environment

 

 

 

Meet the Press devoted their whole episode today to this concept of the loss of truth, at least as it applies to the media. I thought it was worth sharing here before I return in a few days with my articles.

For the video follow this link.

 

The evil proteins (IGG Lambda Light Chains), which is an indirect measurement of my cancer, came back at 58 mg/L. Normal is below 26. When I was diagnosed it was over 2600 mg/L and that is what killed my kidneys. So this is good news that the protein is, for the first time, within sight of being normal. That won’t help me feel any better (physically) but will reduce the risk of further kidney damage.

I am very grateful that my renal blood tests shows a little better renal function, after a few tests showing decline. My concern, which I voiced yesterday, that things had tanked have not been realized.