Just with this title, I can hear some people cheering (and a few showing their disappointment in me), however, I may be disappointing most to the true believers (in CAM) by the time I am done.
If you know me, you know I am a very evidence-based-medicine person. I love facts and am skeptical about new information until it is proven and I’m not even from Missouri (I’m working on a long, two-part Rambling on the idea of searching for truth). I have been very skeptical of CAM (“complimentary” and alternative medicine) and for a good reason. It often fails the tests to see if it works. For example, back when I worked for Mayo Clinic, there was a big market for Omega-3 oils with the claims of reversing memory problems or even Alzheimer’s Disease. Our (neurology) department (and our department was considered # 1 in the country at the time) did a very good study to look at the role of Omega-3 oils in Alzheimer’s Disease. The study was double blinded (neither the patient or the doctor knows who is getting the real Omega-3) and the study was of a long duration (I think 5 years) with a large patient population. In the end, the Omega-3 showed no benefit. But that didn’t slow down the supplement companies from continuing to market it for dementia. There are no peer-review studies for the so-called “jelly fish derived” memory supplement that I know of (and I’ve looked), although their commercials imply there is.
I believe, and believe still, just as Julie Yip Williams, in her books Unwinding the Miracle, stated, that she was not going to turn to CAM to treat her cancer not matter how desperate she becomes. . . but then she does. It does not help, in a matter of fact, it set her back.
Steve Jobs turned to CAM early in the course of his liver disease. Rich people often make themselves the captain of their own ships. At the end, he regretted that decision.
I put complimentary within quotes above, because the reality of CAM is that it is often “competitive” to evidence-based medicine. Both the cancer center in Seattle and my local cancer center had to break off relationships with CAM providers, because those providers told the patients to do things that the cancer centers opposed, such as stopping their chemotherapy.
With all of that said, I understand in a very personal way why so many people do turn to CAM for the treatment of their chronic diseases. It is very disheartening to visit medical provider after medical provider an be told (my paraphrase) “You’re screwed. You did nothing to cause this and there is nothing you can do to help. A few people get better but know one knows why.”
You may not know this but there are two Googles (maybe more). One is the public “Google” and in the shadow is “Google Scholar.” While the main Google searches for the web pages of paying customers first an then the most sought after second, the Google Scholar reviews the research literature. I’m talking real research, such as printed in peer-review journals.
After trying really hard to help my kidneys and then, this week, getting labs that were worse, I spent several depressing hours reading the same old studies (found in Google Scholar) about kidney damage and reversing it. There were no conclusions of anything that could help, not even drinking more water. The same is for damaged motor nerves (which I have, causing significant weakness and a constant twitching and jerking of my muscles that drives me crazy and keeps me awake most nights).
In frustration, I switched back to normal Google and presto, there were hundreds of claims and products to reverse renal damage and motor neuron injury. I, which I don’t normally do, sat and listened to their spiels about their products. But then I did research (back in Google Scholar or other sources) to see if what they were saying had any possible merit. The vast majority were simple bold-faced lies. But a few of them did have a little supporting data. Often it is where a certain supplement helped kidneys or motor neurons in the lab, but didn’t prove helpful in people. Some of them had no human studies. Some of them had one small open-label study by some obscure doctor in some obscure village in India or China. . . on goats.
But before I get to the supplement experiment, I will mention one more of my dabbles in CAM and that was massage. I decided to go for a deep tissue massage soon after I got home from my stem cell transplant. I was forbidden from doing acupuncture because the needles could cause a life-threatening infection. Also, I had a previous deep-tissue massage (years ago, which we won through a raffle). I felt nervous having this strange woman rubbing her hands all over me (I would have felt more uncomfortable having a man do it from homo-phobia tendencies, I’m sure), but it was GLORIOUS.
So, I went to see this masseuse and this time I had to pay for it. It was a mixed bag. The actual massage was also glorious, but there were some hurdles. When I had to fill out the health questionnaire, it looked quite clean (based on the questions asked). Then I told her that I am quite ill, but that illness was not captured in the questionnaire (like it didn’t ask, “Do you have cancer?” or “Do you have renal failure?”). Once I told her I had cancer, I think I became a leper in her eyes. She refused to work on me unless I had my doctor’s permission. I was sorry to say that my personal doctor doesn’t give a rat’s ass if I get a massage or not and probably would think asking for such a letter was silly. I finally talked her into it, promising her that there is no way she will dislodge cancer and cause it to spread.
But the real deal breaker was about a third way through the hour-long treatment, which she was doing in silence. She asked me, “Are you doing any other alternative treatments or nutrition?”
I answered, “I’m on a very extensive diet due to my stem cell transplant and my renal failure, but not through an alternative medicine person.”
There was a pause for a moment and then she added, “Well, you don’t get cancer for no reason.”
I almost pissed in my little gown . . . or blown a gasket if you like. I was so angry, I remained silent for the rest of the treatment and did not make a follow up massage. I did not want to hear the bullshit about my cancer is my fault because I ate a Pop Tart when I was seven or that I used Roundup once in the 1990s. There as been a lot of epidemiological studies about the risk factors for Multiple Myeloma and still very little is known (I’ve mentioned this before) except for a mild risk among carpenters, farmers, and petroleum industry workers. I am none of those.
So, I wish I could continue massage, which could help my twitching and lingering neck pain, but I will have to put it on hold because the stress of hearing the bullshit each week, I’m afraid, would reverse any benefit. I will try acupuncture when I am cleared, which I think will be next June if I am still alive.
So, back to my experiment. I did find about three supplements, which were mentioned in scholarly studies, that helped mouse renal (kidney) or neuron cells to regenerate in the lab but, so far, have not been proven to help humans.
But, when the mainstream evidence medicine doesn’t have any ideas of self-arrest (a mountaineering term but in this case, doing something myself to help stop the progression of my disease) to borrow a term from my pal Donald Trump, what do I have to loose?
Now, if you are in a multiple level marketing company and are selling supplements, please do not contact me to get me to buy your cancer-busting miracle supplements. I’ve had too many of those e-mails and private messages. If you know of any alternative treatment that has some evidence-based research and you are dying to share that, go ahead, as that will not offend me. Mike
PS I am really sorry about typos here. I wrote this at 80 MPH without proof-reading because I supposed to be somewhere.
I continue making progress, at least in the way I feel. My specialist at the cancer center recommended that I try to stop a medication (Dapsone), which she had started to prevent pneumonia. This medication can cause anemia because one of its common side effects is to destroy red blood cells. I was supposed to stay on it until December. After stopping Dapsone two weeks ago, I have noticed a significant improvement in my exercise tolerance. My last hemoglobin was 11.2 (normal is above 14) and I bet when I get my labs next week, it will be at least 12. I even tried running about 50 yards and didn’t die. There is no way I could do that even 2 weeks ago.
I am continuing my chemo every other week with minimal side effects (just one or two days of diarrhea) so I’m thankful about that . . . uh not the diarrhea but the low incidence of side effects.
My major symptom these days are my neurological. I do have an appointment with a neurologist in two weeks. However, with my reading of the studies and talking with this and another neurologist friend, there is probably not much that can be done to help.
We measured my evil proteins (Lambda light chains), the proteins that my cancer produces, last week and it is continuing to drop. It should be below 26. When I was first diagnosed it was 3400. After the stem cell transplant (we were hoping for 0) it was 260. Then after 4 weeks of chemo it was 174 and now, after 4 more weeks of chemo, it is 141. So, we are still moving in the right direction, but not fast enough for me.
Anger and the Assumption of Intent
I keep running into people who have cancer, had cancer, or has a relative with cancer. They often talk about their response of anger with the diagnoses. They assume that I too, at least had a phase of anger. A month ago, I read the book, The Unwinding of the Miracle: A Memoir of Life, Death, and Everything That Comes After. It was written by Julie Yip-Williams and it is autobiographical, about her fight with and eventual death from colon cancer. She is very graphic and open in her descriptions of her disease . . . and her anger. But I didn’t have a phase of anger. Anger has never crossed my mind. The reason that I have not been angry is not because I’m a good guy or have my shit together. I have been very disappointed. I have been frustrated. I have been depressed to the point, of at least twice, of seriously considering taking my own life. Glad I didn’t have a gun in the house or maybe I would have.
Yesterday, as I was on a hike with Greta (my girlfriend . . . and Saint Bernard) I meditated on the role of anger in these situations. Why did anger not interest or tempt me? As I carefully dissected that mood I soon realized that true anger (rather than just disappointment) requires an assumption that it was someone’s or something’s intent to do this harm.
I have had lots of anger in my life. I’ve been angry at people (two that I can recall) who did things to hurt me and hurt me badly. I was pissed at one for almost a decade. So, I am capable of anger. But with both, there was an intent to hurt me.
In the case of cancer, the pure atheist should not have anger because there is nothing out there in this empty universe that intended their harm. It just happened. I use the term “pure” here to separate these people form the atheist who cheats by injecting meaning into the universe, where there can be none. For example, they say they are an atheist but still say things like, “The universe is pulling for me.” Or “I do believe that all things work for the good.” Or I’ve even heard, “I’m praying for the universe to step in and help me.” At one point Julie Yip-Williams describes herself as an atheist, but of this later type. She pumps a lot of spiritual meaning in her godless universe. It is from this paradigm that her anger gains strength. The universe failed her and did so with intent.
Theists have an assortment of concepts of God. Those who see God as a micromanager, where every detail of their lives is orchestrated by God, I believe are most prone to develop anger in face of their cancer. Either spoken or implied, they see God as rewarding them for their good behavior and punishing them for bad. So, when they felt like they were a good person and then get this terrible disease anyway. That pisses them off. They get mad at this God who either intentionally did this to them, or at least, allowed it to happen.
But I have a different concept of God. I think he is bigger than the local micromanager of my life, who cares what color of shirt I wear and who clears the road of fallen tree branches as I drive into town. I do believe that the evil in the world is real. After suffering a great disappointment, years ago, in the midst of my anger I discovered one of the greatest theological concepts within Christendom…”Shit happens.” A more proper Christian theologian will call it something like the fall of Adam, or simply The Fall.
So, the Christian concept is that this world is full of shit. Little kids get terminal cancer, and they did nothing wrong to deserve that. It is not until we come to grips with this state of existence can we be set free from the sense of intent and the anger that the intent breeds. Mike
(Note: Black and White in this narrative is pertaining to a much wider contrast than just race)
I have a few scattered memories going all the way back to when I slept in a crib. Maybe I slept in that crib until I was three or four, but it couldn’t have been later than that. I remember learning of the world around me through the behavior and eyes of the towering adults, which had inhabited this strange, new world for much longer than I had. Maybe it was a congenital way of thinking or again, maybe it was learned, however, the essence of it was that the world was a place of order, of cause and effect, and where goodness triumphed.
I became familiar with the concept of death through TV shows. I saw Matt Dillon shoot and kill Indians and bad guys on Gunsmoke. Later, death came much closer to home when my grandfather and then uncle died. I understood then that our parting from this world came to us all but would only come when we were old and frail and wanted to die…or if we were an Indian or bad guy.
In this perfect world of the 1960s and 70s everything was well-demarcated into orderly causes and purposes. But the first crinkle came into this peaceful world of mine when my neighbor was killed in a car wreck. She was 19. I was stunned. I was only 6. I did not know that death could come to someone who was not old and frail, who was not an Indian or a bad guy, and who lived so close. Joyce was a Methodist and in my primeval construct of God, he would protect even Methodists…although we were Baptists. God would certainly protect us Baptists, wouldn’t he? We were told by our preacher that all things worked for our good.
In the subsequent days after Joyce’s death, there was much discussion about the cause and effect within the troposphere above me…in the space where adults whispered and winked to one another. There were suggestions that she had done something wrong. This became clearer during the trial about her accident and I think my own mother had to testify. I’m nor sure why there was a trial, except there was a family who was also seriously injured by the accident and they were trying to determine fault. During this time, I overheard the adults say that Joyce was upset the day she was killed. Either her boyfriend had broken up with her, or he had been seen with another woman. I don’t remember. I was probably too young to understand anyway. But she went to find him, driving very fast and passing a car on a curve between our little hamlet of Fall Branch and the “metropolis” of Kingsport.
After hearing those conversations which inhabited that upward space, I listened and tried to make sense of them all. I had to, somehow, insert those dialogs into my black and white world. So, Joyce was a bad guy and I never knew it? But then again, I heard my mother pity her, pity her and her entire family, as if it wasn’t her fault. I mean, one could reason that if the family in the other car had not been there—meeting her head-on—on a curve, that she would have been successful in making to her boyfriend’s house. Maybe then she could have confronted him, and like in the movies, he would have recanted, and they ended the whole mess in a great embrace and such a passionate kiss that it would put Wesley and Buttercup to shame. Then Joyce would be a romantic heroine…and not a bad guy after all, right? But the people in the other car were Baptists, good Baptists. The father was a preacher and they thanked him for protecting them. They were hurt badly though…but were not killed. Maybe that’s the way God works, killing the Methodists and only maiming the Baptists, putting them on that curve at the precise time. Is that right?
I’m sure that my orderly world had other challenges during that epoch of my life, challenges that I don’t remember now.
But there was Charlie—a year ahead of me—and his demise against a concrete bridge parapet…and another classmate—whose name now escapes me—but I attended his funeral. He also died in a dangerous curve on a county road when he met a box truck in his red VW Beetle.
The next major one—and I remember that one too well—was yet another car accident. This time it was a close friend, Amanda. I did not attend her funeral, regrettably, because I was too messed up about it.
Amanda was not racing to confront someone in a high state of emotions like Joyce was. She did not pass on a curve. It was a freak accident. She was on her first solo drive just turning sixteen. She had asked her parents if she could take the family pick up down the road (a very short distance) and get the grocery item her mother wanted. Somehow, the tire of the truck went off the pavement and pulled her into the ditch at a relatively low speed. The truck rolled over, her coming out the window and being crushed. I was devastated. I could constantly see her long, crinkled auburn hair and big smile, (encaged in braces), in my mind, thinking it couldn’t be real, that I would run into her once again when I came to visit her sister. But I never visited her sister again out of my shame for missing her funeral. She, and her entire family, were good Baptists. But then when I tried to hammer that event into the shape of the world, which I had imagined, it had to be very malleable to fit…and it took a great deal of hammering.
It was still later, while in college, I stepped into the world colored by John Calvin. While my contemporaries were maturing into an adult world with less certainty, I was venturing into one with much more. Within this construct, for God to be big enough, he also had to have total power over everything. This God also had to be totally just, totally loving, totally good, and unchanging. He even had to have total control even over my thoughts and choices, including my choice to love and follow him…or not. Considering that mindset; Calvin’s God decided before we were born if we were going to be good or bad and we had no choice in it, yet, those we considered bad, were to be despised for who they were. But oddly, us Calvinists were outraged when the “liberal sociologists” first suggested that sexual orientation was not a choice. We insisted it was, and a very bad one at that, yet—at the same time—maintaining that none of us had a choice in anything because God—as powerful as he was—preordained us for who we were. Confused yet? God was also going to condemn all the bad people to an eternity of suffering in Hell’s fire. So, the bad people were created as a simple fuel, like kerosene or kindling. Burned, yet with a soul. Unlike kerosene or kindling, the burning would come with great agony. There were a lot of “fuel people,” with the homosexuals being only one small fragment. There were more bad ones than good. The bad included the Muslims, the liberals, the Democrats, the Catholics, and even the Baptists and Methodists. In our deeply personal places, we hated the sin AND the sinner.
At the same time, thinking that we also had no choice but to be good, but because we were good, God loved us most. Conveniently, we were highly esteemed in God’s economy, but in—crocodilian—humility, because this higher esteem was bestowed upon us. In other words, God had created us with irresistible goodness and (paradoxically) we wore that goodness in great humility (wink, wink) …and we were—honestly—proud about that. We felt like only we had brains big enough—bigger than the Baptists and Methodists’ brains at least—to understand these—what seemed like—absurdities. It was the kind of absurdity as the “Liar’s Paradox,” which implies, If I state that I’m a liar, then it means that statement is a lie, which means I’m not a liar, which means the statement is true, therefore what I just said was a lie, and therefore I am a liar and so on and so on. This endless absurdity reminds me when I was about seven and I discovered if you hold a hand mirror in front of another hand mirror you created this tunnel of repetitive reflective images that go on to infinity. I thought I had discovered a portal to another universe, and it was my secret.
Like my Calvinistic contemporaries, I wanted to regiment my life like the citizens of Calvin’s Geneva in the 1550s. The blacks had never been blacker and the white, whiter, with clear boundaries between the two. It was like a checkerboard, where each square, black or white, was carved out deep as receptacles for the interpretation of real-life incidents. But those events came in round and sometimes triangular shapes, making the fitting an exercise in contortionism at its extreme.
This worked out fine for a while, a short while. Then other wrinkles appeared in the platform upon which these ideals were construed and practiced. Like when my friend Mark, the greatest guy I had ever known, and a devout Calvinist, died a horrible death at age 26 from a brain tumor. Until the end he praised God for giving him the gift of the tumor, knowing it was his destiny from the hand of a loving and merciful God. I saw no mercy in his suffering and death. But through mental gymnastics and squinching of the squares, I was able to continue in the black and white world. There, I knew everything, all the answers, with complete certainty, especially all matters of God and his thoughts. My mind knew all the boundaries of God and knew them well. It was a just world, so I thought, where the good people ended up on top and the bad people destroyed, by this “loving” God.
But then, I met a person of color, he was scary at first. Then I met another and another. I had been brought up within this black and white world that the white people were superior to the “colored.” These people of color were nicer than many of the white people. They were smarter than many, braver than many, and more moral. I saw no inferiority in them. Calvin’s God was not color blind but played favorites. I faced yet another paradox because I liked these people.
But then, as I matured, I saw that those on top were not so good, at least many of them. Some of them were down-right hideous. This didn’t make sense to me. I witnessed the best person I ever met, at least on the surface, was also the cruelest in his private places. This made me to start to wonder…and wander in my faith.
Soon I met people of different faiths. I met Iranian Muslims. They were very scary, with their great emotional candor. Later I met Arab Muslims, equally as frightening. But again, they—these bad guys—were better people than many of the people I had assumed were the good guys. They had greater hospitality, greater love, and greater faith with greater certainty. These bad, “fuel people,” were good people after all. Then I made the terrible slip-up of starting to love them and loving them I did with total abandonment. Would God be mad at me? Had he made a mistake? Was he confused? I suppressed my own confusion, downward with both hands and it was like trying to hold a sheet of Styrofoam under water.
Then one day, it dawned on me that women were smarter than I had assumed. Many were smarter than me. I already knew that they were kinder, and more mature in their decision making. But Calvin didn’t see them this way, not really.
Finally, as I ventured even further from home, I met a whole crowd of scary people. Some were queer. Some were gay…or sexually uncertain. Some were Catholics, some atheists. But most of them were thoughtful and nice. It became even more difficult for me to continuing seeing them all as fuel. The odd shaped pieces from the real world around me were not fitting well at all into the checkerboard squares of black and white, even with powerful hammering…with mighty hammers. The edges of the squares were starting to become gashed on all four sides.
I was suffering from the contortionist’s exhaustion. I paused for a decade to step back and make sense of things. The problem was that my God was too small. He was Bronze-age God trying to have meaning within a silicon-chipped world. He was a God of a 1550 universe, one where the earth was the center and it was only 20,000 miles wide. But we were living in a universe that is 27.4 billion light-years wide with many times more stars than sand grains on our shores. The Bronze-age God is not big enough. The real God, if there and I think he is, is too big to understand. Too big to define. To big put into a box and to build a wall around with our minds.
Model of the Universe, 20,000 miles across, circa 1550
I don’t know the answer to the big questions of why there is evil in the world. I don’t know who is good or bad…but I still can recognize hate and lies in any type. I don’t claim to know why Joyce, Amanda or Mark had to die. I can still hold that God is loving and good, but I can’t claim to know him completely. He has to be a God of mystery, beyond human comprehension to be this big.
I am glad I did not get cancer while I still lived under the shadow of the Bronze-aged God, because if I had, I would have attempted to find meaning and purpose in something awful. I would have been forced to put the “regular icosahedron”-shaped object into the simple square receptacle as if I could have figured it ALL out with certainty. I would have been tempted to be mad at that small God, who should have known better. But it makes no sense to try to grasp with a comprehensive understanding. . . or to quarrel. . . with a God who is this arcane and immense. Mike
This discussion will start with a theological introduction, but quickly become practical and common.
I’ve been around Presbyterianism for most of my adult life, in one form or another. While that sounds quite homogeneousness after decades of living, it is far from it. My old, conservative, Presbyterianism, sees my present Presbyterian church as not within the domain of Christianity because we support women in leadership roles and don’t ostracize the gay community (to name a few issues). On the other hand, there are those in my present church that would not see my old churches as within the fold of Christendom because they have racism (in addition to sexism) overtones and couldn’t care less about this material planet. I think I observed much more commonality between the Islamic Taliban in NW Pakistan and conservative Christianity, than between the ends of the spectrum within Christianity. But with that said, the point that I was going to make, which is universal to all Presbyterian churches (at least in part) is the Westminster Larger and Shorter Catechism, an old Scottish document (16th and 17th centuries) which expresses in writing the basic guidelines for personal and collective faith within the Presbyterian Church.
The Shorter Catechism, in some ways, is a summary of the Larger Catechism and has the purpose to educate children and new believers into the Presbyterian faith. It is set up as a list of 107 questions with answers following. Now that I’ve made this lengthy introduction, I will get to my point. The very first question (if I remember right) is the following:
What is the chief end of man?
Man’s chief end is to glorify God, and to enjoy him forever.
I probably heard the above statement for the first time when I was a Freshman in college, as this was the year I got involved in Presbyterianism. I probably said “wow” in my mind if not audibly. I know that since then, I’ve heard this mantra quoted over and over and at least a dozen sermons built around it. But did we or do we now, have a clue what it means? I think it is like many clichés that go around all societies, not just Christian subcultures, (such as “All things happen for a reason”), that people spend very little time in trying to understand or define. The reason is that most of us don’t know what it means, at least in the full philosophical conclusion of it. I’m sure books have been written on these statements without concise conclusions.
In contrast to the Shorter Catechism’s opening statement, life teaches us something very different. We arrive into this world as the “Invisible Man,” who cannot even be visualized until he don’s clothing. Our “clothing” is our accomplishments and contributions to the world at large. It starts at a very young age (this is not about me, but in people in general), “Oh, look, he’s walking, and he is only 11 months.” But quickly it evolves into, “He’s only five and can say his A, B, Cs.” Then it becomes, “He can read a newspaper and he’s just in second grade!” Even later, it becomes, “He’s fantastic because he scored the winning basket!” You can add thousands of other descriptors of accomplishments but as adults it is often; “He is such a nice person,” “Did you see how much he makes?” “He has really helped a lot of people,” “He has such a big house,” “He has a really nice car,” “He has done so much volunteering for the community,” “He has won so many awards” “He has written such great pieces,” or “He fought in the war, he’s a real hero.” I think the suicide reaches their end when they realize all the above was meaningless.
But what happens when all of that is stripped away? Are we standing as the invisible man again, naked with nothing, absolutely nothing on which we can hang a “what is my purpose” hat? Dose the first question of the Shorter Catechism work here? I think it is too abstract to give more than pretend comfort. You could get a roomful of Presbyterian theologians, throw in a few Deconstructionist philosophers and the debate about the meaning of this question and answer could go on for years.
Most of us don’t face this dilemma until we are on their deathbeds. Like Private Ryan, at the end of the movie when he is an old man looking at the graves of those who died to save him, asks, “Was I a good man?” We use the opium of busyness to distract us from the really hard questions of life (I want even to mention the big one, “Does God exist?”). We plan and take trips, we watch TV and movies, we read books, and we find something to fill every moment of every day so that the silence doesn’t seep in allowing enough space for the hard questions to condense into language.
I am not on my death bed, but I awaken each morning lying in my warm, comforting bed. We sleep with the windows in our bedroom open, so the ambient temperature in our bedroom is roughly the same as outside. So, for example, the air in our bedroom must have been in the high 30s this morning. I think I’ve mentioned this before here, but the question comes to me, “Why do I need to get up?” It is an abbreviated form of the grand question, why do I exist or what’s my purpose. If I lie, there long enough, the soft answers start to creep into my mind, “Greta the dog is waiting for you. She wants to be petted and let outside. There are dishes that need washing, floors that need sweeping and mopping (thanks to Greta), clothes that needs to be washed and other chores that need to be done.” Is that it? Oh, and there’s books to be written that will be read by few.
This year, as the invisible man, my clothes has been stripped from me. My healthy body, which made all my accomplishments possible, is now rotting from beneath me, and that is out of my control. If I were reduced to just a brain in a jar, still living and thinking, but nothing else, would I have value? Would I have a purpose?
I am glad that I have had this opportunity to face this harsh reality, before I reach my deathbed. It is not a pleasant process, to give up all that clothes, all those things that made you who your are, father, husband, PA, writer, adventure traveler, and it is suddenly just you, you and God to reckon with meaning. It is also daunting and terrifying to grapple with in a constant undertow pulling you toward sadness.
For now, I will find meaning in doing the chores I’ve mentioned above, loving my family, petting my Greta, enjoying the grandeur of God’s creation as an extension of himself (is that the practical application of the Shorter Catechism’s first question?), laughing when I can, and breathing. I don’t expect most have real answers to these questions (I despise pretentious answers with little thought, just the repetition of clichés). I have great respect for those who simply don’t know and are willing to admit it. I have no respect for those who are not even curious enough to even ask the hard questions.
Sorry for any typos, I need to wash dishes, pet the dog, mop the floors etc. and did not have time to proof-read, or want to find such time.
For a change, I have mostly good news to report. However, before I get started, I do want to add a caveat. I do have multiple myeloma, which is considered, at this point in history, incurable. So, there will be a day of reckoning sooner or later. My greatest hope is that I can stay alive long enough until a cure hits the market (which could be within 3-5 years). I only say this because whenever I report good news, it is sometimes interpreted as “Mike you’ve beat cancer! I heard you’re cured!” So, I wanted to be clear. I will share about winning some battles, but the war still stretches out to the grimy horizon.
I had my routine labs done one week ago and my anemia and renal function are slightly better, continuing this course of slow improvement. I am very thankful about this course. Additionally, I had my cancer labs repeated, which I will discuss below.
I’ve been very open here about suffering, and I’ve only shared the half of it. However, I’m feeling the best I’ve felt since this terrible diagnosis. The reason is, I’m not doing heavy chemo or dialysis right now and the brutal side effects of the stem cell transplant are now waning.
I have two major complaints, which separate me from being almost normal. The first are my neurological symptoms which persist (muscle twitching and jerking). The second is my intolerance to exertion. We are not completely sure what is causing the later symptom, it still could be the anemia. This symptom is better than a few weeks ago, but still limits what I can do. I am very grateful for feeling better after feeling horrible for 10 months.
The State of the Cancer
Today I saw my multiple myeloma specialist at the Seattle Cancer Care Alliance. We had in hand the results of my most recent cancer labs. I had shared a few weeks ago the devastating news, that I learned from my local oncologist that the stem cell transplant completely failed. However, considering the fact that my most recent cancer labs are better (the “M-Spike” is now only a trace and the bad proteins are lower), and my specialist review of my previous labs (bone marrow biopsy and full body MRI) had a different interpretation of them. She believes that the stem cell transplant did reduce my cancer by at least 50%, in other words, a partial remission. So, still it is not the stringent remission that we had hoped for, but it is not the total loss of effort that we first believed. It could mean that we can keep my cancer in remission with minimal chemo for years to come.
Because my cancer is “milder” that previously thought a month ago, I will not be a good candidate for the CAR-T study, which I had mentioned before. This is not bad news as the study was a last grasp for hope. However, the CAR-T is not a cure but gives patients about 1 year of cancer remission, with a high risk (>5%) of death from the actual treatment. It will also mean that I will not have to spend two more months in Seattle this winter but could possibly return to work if I continue feeling better, have no setbacks, and my old employer still wants me back.
So, in conclusion, these things are all good news. I still covet your prayers that my cancer will stay in remission, miraculously disappear, that my lingering symptoms will vanish, and that my family, Denise and the kids, will be encouraged.
Last Saturday morning I broke my curfew (to avoid indoor group gatherings until Jan, 2020 because of my stem cell transplant) by attending the movie Making Peace with Creation at my church ( here’s the trailer: https://www.youtube.com/watch?v=K58eechXY_Q ). The film does an excellent job of presenting the case why the Christian should be engaged as caretakers, not exploiters, of creation/nature.
Protecting the Earth—Opposite = Greed
The discussion around this film quickly brought us to the factual place that much of white-American-evangelicalism (one of the dominate Christian sub-cultures, at least in the US) opposes most efforts to take care of creation. One example is their denial of climate change, especially climate change which is caused by human activity. Another is their opposition to efforts by the EPA to protect the environment.
Caring for the environment is an issue that is now, regrettably, falling along political party lines; the Democratic Party favoring engaging in addressing climate change and protecting the environment, and the Republican Party denying climate change and de-regulating businesses, especially environmental regulations.
I believe, however, that caring for the environment is one of three major issues, that are now considered political, but are really moral and universal and should never have been considered political. The other two issues are the loss of truth and the dignity of the individual.
When I look at the issue of protecting the earth, you can easily reduce it to one thing, greed. I say this because there is no one who thinks pollution (Merriam-Webster definition: the action of polluting especially by environmental contamination with man-made waste) does anything good for the planet. The issue is, how much pollution do we tolerate? The only reason we ask that question is for the sake of money. Companies can make more money if they are allowed to pollute more.
I watch Fox “News” daily (along with CNN, MSNBC, NPR-PBS, BBC, AP-News). They are the only people (except for some right-wing web sites) that promote the denial of man-made climate change. Every time they parade an “expert” on the show to make such statements, I do a due diligence by investigating that person. Fox has never had on their shows a true climate scientist. Most of the “experts” are lawyers who work for anti-climate change groups. One is a weather forecaster with no climate research or experience but is an evangelical, and one has a PhD in forestry. However, all of them, if you follow the money, have roots in the fossil fuel industry (for more on how Fox misleads see; https://www.citizen.org/article/foxic-fox-news-networks-dangerous-climate-denial-2019/ ). The reality is that 98% of true climate scientists, who are actively doing climate research, believe that the earth is warming, and that warming is caused by human activity. It is an accepted fact in the rest of the world and only in the US is it a political matter. Climate change is only one facet of taking care of this planet, however, all of the anti-planet positions have the same roots in making more money for the polluters. However, it is now framed as a political issue.
It is reasonable to have political discussions about how much of the federal budget should be spent to address environmental issues, but it should never have been a political discussion if we should protect the planet or not. So, the moral issue that is opposed to protecting the planet is raw greed.
Loss of Truth—Opposite = The Lust for Power
I use the term truth here in its original meaning of “accuracy, correctness,” as recorded in the mid-14th century. Truth is now one of the most abused words and has become a relative concept, the personal “truth” or the “truth” that is most congruent with my subculture, especially when it relates to a particular church dogma or a political party’s presentation.
It is that later redefining of truth that is the problem that I want to address. While, before now, neither political party had a corner on truth, as it relates to the classical definition. Both parties would spin or even falsify reality to support their political agenda of maintaining their grip on power. When Bill Clinton said, “I did not have sexual relations with that woman,” it was an example of a lie to support his own reputation and that of his Democratic party, helping them to maintain power (vs impeachment).
However now, truth has suddenly deteriorated much further than the convenient spin to right-out, bold-faced lie and a complete divorce from reality. Those who monitor factual statements in the political realm, and do so without political bias, are clear that the present Republican administration has raised dishonesty and the bold falsification of reality exponentially, to a much higher level than ever before. We are in a very serious state of thinking now.
I believe the reason for this sudden decline in truth is the influence of the persona of Donald Trump. I am speaking objectively, not from a political prejudice, when I say that Donald Trump has always been known as a dishonest person, and that was the foundation of his business practices. To him, lying is his method of acquiring and maintaining power. He brought with him his persona of, what some in the mental health field, have called a narcissistic personality disorder which is often combined with being a pathological liar flair (to keep the focus on themselves and to maintain their power). Again, I don’t say these things from a political standpoint, as—before now—I had considered myself more of a Republican than a Democrat. I am saying this a factual point and history will stand as a testimony to this fact.
This disregard for truth quickly moved beyond the person of Trump, to contaminating almost the entire Republican party like the flu virus. It happened as soon as he was inaugurated, if not when he won the party’s nomination. The best example of this is where the official photo of Trump’s inauguration clearly showed an attendance that was far less (some estimates were half) than Obama’s (the most attended inauguration in history, because he was the first black president and a lot of people wanted to witness this), yet, the official word from the White House and the Republican party was that Trump’s inauguration was the most attended in history despite the photos. This deception was not a trivial matter but represented a profound and wholesale decline from reality for the entire party. It was a pivotal moment in our country’s history. If Trump had run as a Democrat and won, I suspect the hard-core Democrats in Congress and the Senate would have done the same. Maybe not. But is not a political issue; it is a moral issue of seeking truth Vs the lust of personal power.
Now, if you attempt to speak real truth, and if that truth is not flattering to Donald Trump or the Republican party, it is seen as a political attack and disregarded. I am not saying that the Democratic party still doesn’t do their own spinning of reality to suit their needs, but there is now, at this point in history, a chasm between the two parties in how they evaluate and dispense truth. Trump is the great manipulator of reality, and his coinage of the term Fake News is his attempts to discredit anything that goes against the false reality that he is attempting to create, that he is great and powerful.
The most profoundly sad thing about this development is that the white-American-evangelicals have adopted Trump and his falsification of reality as their own. This unholy union, and I’ve said this before, is one of the most tragic things that has ever happened to the Church in its 2000-year history. If Christianity does not stand for truth, regardless of which political party espouses it, then they have lost everything. This adoption of dishonesty without critical thinking is far worse than the pro-life Vs pro-choice debate. It is a far worse sin to embrace someone who lives in this false reality but espouses a “pro-life” position, than embracing someone who speaks the truth most of the time but adopts a pro-choice view. If God is there, then he represents truth in the classical sense. The more un-truth that you or your associations embrace, the further you are away from God and the more delusional your life becomes. All sins are rooted in self-deception.
However, truth should never be a political issue. Both political parties should be after truth in the classical sense, rather than spin. This is not a political problem, but a deeply moral one.
The Dignity of Humans—Opposite = Racism
The third issue that has been wrongly politicized is the devaluation of humans based on cultural traits. Politicians often use this emotional strategy, for example, if they want to marginalize a group of people, use a particular group of people as scapegoats, or go to war with a particular culture.
It is a legitimate political discussion about allowing more or less immigrants into the country (I have never met a Democrat who is for “open boarders”). It is a reasonable political discussion about who we should grant visas to, a merit-earned visa or first come, first served. However, the idea of dehumanizing a particular people with statements like, “they are rapists, terrorists, drug dealers, and thieves” is not a political discussion but a dark, moral failure of racism (especially when it is not factually true). To add actions to those lies is to mistreat a people group by not showing them the dignity that all people, created in God’s image, deserve. When this attitude is applied by cultural references, color of their skin, language they speak, country of origin, sexual orientation, religion, or financial position in life, it is sin of the worst kind, blatant racism.
I have never cared for Donald Trump, since I figured out, decades ago, that he was a narcissist and a very dishonest man. He was a Democrat when I first formed my opinions about him. There was also evidence that Trump was a racist going back for decades, however, I never knew that side of him until he promoted the “birther” issue with Obama, a clear racist endeavor. However, I was never tempted to hate the man until I heard his campaign speech where he said that the Syrian refugees were mostly terrorists, which was absolutely not true. He added, because they were terrorists, we should therefore not allow them in this country or show them compassion. I also heard an evangelical friend and Trump supporter, add that we should bomb the refugees while they are still in their boats, in the Mediterranean, because they were terrorists. This really pissed me off because I’ve worked with refugees from war-torn countries, starting when I hitch-hiked to the Khyber Pass and took care of refugees from the Russian-Afghanistan conflict in 1981. Denise and I signed up as missionaries to work with refugees from the Lebanese civil war in 1988, however, we were reassigned at the last minute to go to Cairo. I have had the opportunity to visit and work in refugee camps in places like Pakistan (again) and Nepal since then. I love refugees to pieces. Before coming down with this stinking cancer, I was looking at opportunities to go and work with refugees during our retirement, such as in Syria or Yemen.
We must face the fact that Donald Trump promotes racism and racism is always a means (a terrible means) to boost our own egos. It goes like this, “I’m different than you. I’m better than you. You are inferior to me because you are not like me.” Racism, even the racism of deeply confident people like Hitler (or Trump), is always built on deep feelings of personal insecurity.
The Politicization Process
How Did these three issues become political? On the eve of the election, when we were all shocked about Trump winning the presidency, I was having a discussion with a good friend and Trump supporter, Hank (not his real name). I continued the discussions with Hank for several weeks. The Day after the election I participated in the Women’s March and the March for Science a few weeks later. It was during this time that Hank said the strangest thing to me.
I had known Hank for a couple of decades, and he was an evangelical at the same time I was. He was certainly a staunch Republican, as were all my evangelical friends because we were (wrongly) taught that was God’s party. Hank got me watching Rush Limbaugh and Fox News, and in the beginning, I liked both (25 years ago). But I also knew from hanging around Hank that he hated (he wouldn’t use that word because evangelicals love to pretend they don’t hate) gays. Hank also said a lot of derogatory things about blacks and other people of color. He despised the “Black Lives Matter” movement as well as black athletes kneeling. I could tell he was racist, as was I (reformed now, I hope), since I grew up in the racist south. But after the election, Hank started to say things to me such as, “We didn’t treat your party like this when your people were elected.”
My party? Who’s my party? Did he assume I was a Democrat because I despised Trump? He he think I was a Democrat when I looked at the inaugural photos (above) and see that Obama’s was larger? Did he think my views were politically motivated? There are a lot of Republicans that I have…or let me say, I had respect for. I had never considered myself a Democrat, while, at one time, when I was an evangelical, I considered myself a Republican. No, I don’t despise Trump because he’s a Republican, I despise him because he is a narcissist, lying, racist, crook, and couldn’t care less about this country. I would feel the same about him if he were still a Democrat. Hillary Clinton was not my favorite candidate, although she is far more intelligent, moral, and honest than Donald Trump. There were plenty of other candidates on both sides that were decent people and would have made great presidents.
I have said, and I stick with this view, that being a Donald Trump supporter, regardless of which party he is part of or if he claims to be “pro-choice” or “pro-life” is incompatible with being a Christian in the same way someone cannot be a Satan worshiper during the week and a Christian on Sunday. There is simply no excuse for it anymore and it makes me wonder if they ever really knew the teachings of the historical Jesus or had only bought into the comfortable white-American -evangelism subculture that has almost nothing to do with original, authentic Christianity. That to them, greed, power and racism are attractive traits, but traits despised by the real Jesus of history.
When I talk to these people, I have the same feeling as I’ve had when I’ve talked to other people involved with a cult. They have lost all discernment, have a very narrow input of information (in this case Fox News or right-wing web sites) and swallow the lies that keep them in bondage, such as the Democrats are the devil, Donald Trump is Pro-life and will overturn Roe Vs Wade. It is not going to happen because being “Pro-life” is simply a baiting technique for the Republican party to get the evangelical vote and they have no intention of making abortion illegal. They could have done this easily when the Republicans had all branches of our federal government. I suspect that privately, they don’t want abortion to be illegal because of the “Family Values” Republicans who want it as an option for their mistresses in case they get pregnant. Don’t take me wrong, Democrats bait other groups for the same reason, votes. Was I mean to say that?
So here are some issues, which are debatable and can easily fall along party lines, 1) issues of taxation (who gets taxed the most), 2) how health care is provided, 3) US involvement in foreign wars, 4) balancing the budget (one of the reasons I used to favor the Republican party, but now they don’t give a rat’s ass), 5) infrastructure maintenance of America—how much should we spend, 6) issues of policing, such as gun control or mental health screen for gun buyers, which drugs should be legal, etc., and I could name several others. But the three issues I’ve discussed above are not political, they are moral.
If my cancer has anything to with what I’m typing it is I care even less what other people think of me, or if I offend someone. Life is short and seems far shorter to me than I thought even a year ago. I have never cared a lot about social mores, but even less now. Those who want to politicize these issues think I commit social blunders by talking about these things, because it is considered offensive by some. But this is the reason that we must remove these moral issues from political debates. These are not just matters of opinion. If (think of the book and 1973 movie, Soylent Green) someone was in town, taking small children or babies and grinding them up to make dog food, would we speak up? Or would we remain hushed up, being afraid that we might offend someone who has the opinion that grinding up babies is a good thing? Read about Dietrich Bonhoeffer and his friends in the face of rising Nazism and you will see the tension they had to overcome. It was not political to them (in the end) but moral.
The Silence of the Lambs
I am also very disappointed in, not only the Trump supporter-accomplices, but the complacent, meaning those who either have no opinion about these moral issues, or (more likely) have an opinion but never talk about it. I do have some empathy for pastors and others who are these delicate positions of trying remaining neutral on political issues, but these are moral issues. I read a statement by the Navigators, my old Christian organization, and they said that they would not take any political position because they don’t want it to distract from Jesus. I say, bullshit! It is not political, but moral! If you take away the morality of those three issues mentioned above, then your “Jesus” is neutered. He is a paper Jesus that has no substance. He preached for finding real truth. He preached for human dignity and universal love. If you declare these as unimportant political concerns, then you open your hand and have nothing in it. It is like being a dairy farmer and deciding to tie off the cow’s teats for good, because their milk is messing up the barn. Then what’s the point of being a diary farmer?
I certainly don’t have a corner on suffering. If I bring anything to the suffering table, it is that I’m a novice. Before now, I’ve had a pretty good life, a life devoid of much suffering. Maybe that’s why it has taken me by surprise and I’m still trying to sort out how to live with it, without too much self-pity and the accompanying depression. I have been blessed to have family, friends, and even strangers who voice empathy if not compassion.
Since I’ve been ill, I have had countless people come up and tell me their own stories. Stories of when they, years ago, had cancer and came close to death with great suffering. For others, it is stories of how they have suffered from pain or other symptoms their entire lives. We really do live in a broken-fallen world. It could be pain from their backs or suffering from Crohn’s Disease or who knows what. At least in my relationship with them, they have suffered in silence. I hope the reason they hadn’t told me this before isn’t because they thought I would not have cared.
Pity has negative connotation. I’ve heard many lines in movies or books where someone says, “I don’t want your damn pity!” In this past couple of weeks I’ve been thinking about the difference between pity, a negative term in our thoughts, and empathy, a positive term.
I found this diagram (below), created by a psychologist (Robert Shelton), that explains it well. Simply pity is our acknowledgement of someone’s suffering, who is suffering due to no fault of their own. Sympathy is where you care about someone’s suffering, empathy is where you feel someone’s suffering, and compassion is where you try to help someone’s suffering.
I hope, in my line of work in chronic head and face pain, that I had empathy and compassion. I think I did. I could deeply imagine my patients’s pain to the point, I felt like I could feel it too. I did, with all my heart, want to relieve such pain. . . if it were within my power to do so.
In these days, and I don’t want to be too candid because it is a small world, I sometimes feel (and this could easily be my wrong interpretation) that my medical providers have none of the above. Because the treatments have failed, I feel like my appearance in their clinics is a source of great dread for them, as if this is somehow my fault (and of course it is not). If I voice my symptoms, it seems to frustrate them even more so I’ve decided to not bring up how I’m feeling anymore. I did not, thank goodness, have this feeling at the Cancer Care Alliance in Seattle last summer and I will be seeing them next week for a follow up, where I hope to vent all my sources of suffering to a listening ear.
But as I thought about this, I realize that I really do desire pity. . . and that’s all. I don’t expect anything more than the simply acknowledgement of suffering and the understanding that I’ve done everything humanly possible to avoid it. That makes one feel so much better than a denial–or worse, the blame–of suffering.
If I ever survive this and am at least out in the the social world, if not back to work seeing patients, I hope that I carry with me a tremendous desire to listen to other people’s suffering and to acknowledge it and to try to go beyond that to real empathy, and when possible, real compassion (as defined above). I realize now that I had failed at this often and I am sorry that I have not afforded the opportunity for others to confide their suffering with me. I need to do a much better job of this, and that is my lesson from all of this. Mike
Last week, I read my first book by Marilynne Robinson, Housekeeping. I profoundly enjoyed the book as it read like some of the best poetry I’ve read. The novel did not, however, excel in the way of plot or character development, but that didn’t matter because the words were so beautiful. I was so moved that Denise and I watched the movie adaptation of Housekeeping later in the week. It was a flop and I was afraid it would be because you cannot capture the beautiful narrative in a film. They did try with a couple of long quotes from the book, but the movie could not stand on the plot or characters.
Debi had recommended I read other books by her. The only book I found in my literary well (the Washington State Library Association Online Loans) was When I was a Child I Read Books. It was the only audio book available to download of the more than 20 books recommended by my blog readers.
Yesterday was not a good day for my symptoms and last night was worst so there was very little sleep. But during the night I did start listening to When I was a Child I Read Books. I was further blessed by the fact that Marilynne was the reader-performer, herself, on this particular recording. Often it is a professional reader who performs in these audio recordings.
Listening to the book did nothing less than blow my mind. Not only did the book continue in almost poetic prose as her previous book had, but this book is nonfiction and covers so many topics of history, anthropology, physics, theology, and I could on and on.
I have always considered women has being more emotionally mature than men. After having read Anne Dillard’s Pilgrim at Tinker Creek, and now When I was a Child I Read Books, I have now concluded that women are also smarter than men, but have been denied the opportunity to show that brilliance throughout our history.
I will still claim that men, like the neanderthal, have more brute strength than women . . . most of the time, unless they are rendered weak by cancer, then they have no advantage.
I have been able to accelerate my book consumption by both listening to books (per the Washington State Library audio book downloads) during the night when I should be sleeping, and reading hard copy of other books. I’m going through a book in 48 hours now and suddenly I’m running out. I have read about 50 books since my process of stem-cell transplant.
I am mostly interested in well-written fiction, but am open to well-written historical (non-fiction) books.
I will list (as many as I can remember) that I’ve read this summer, with my personal 1-5 rating, (5 = excellent, 1=terrible). I have a lot of 5s because I try to select books carefully. Look at the list and if you have suggestions for others, please put your recommendations under “comments.” This is about half of the the one’s I’ve read, but I can’t think of the others off the top of my head.
Treasure Island – 3
Housekeeping – 5
Hillbilly Elegy – 4
Little Faith – 4
How to Change Your Mind – 3
At the Wolf’s Table – 4
The Unwinding of the Miracle – 4
The Living – 3
Galileo’s Daughter – 5
Pilgrim at Tinker Creek – 5 (+++++)
In the Kingdom of Ice – 5
The Idiot – 4
Train Dreams – 5
Sabbath’s Theater -1 (well written, but I had to stop reading it after 2 chapters because it was so disgustingly raunchy)
Ambush – 1 (terrible but very popular and made a lot of money)