UPDATE:9/17/19

I never meant to do updates this often. Maybe I should switch to Twitter . . . may God forbid.

There are 5 measurements to set the boundaries of MM. Last time I shared the very discouraging news that one of them, the bad protein, was still high and we were expecting zero. I have one new measurement and it is better. It is the M spike (which is a direct measurement of the expression of the cancer gene). Mine is down. It is still abnormal, but it is the same as it was 25 years ago, when this marker showed up on a routine blood test for something else and I had to be worked up for MM. This number doubled in January and stayed double until my stem cell transplant. So the transplant has done something besides torture me almost to death.

My anemia is slightly better with a hemoglobin of 10 now. I am thankful it is moving in the right direction.

My white blood cells are still dangerously low, but, very slightly improved this week. Ironically, and sadly, my brother was just re-admitted to the hospital with a very low white blood cell count. He is dealing with leukemia and is often in worse shape than me.

 

UPDATE:9/14/19-B

I want to apologize for the post I did yesterday. While everything I said was true, and I waited 24 hours after I got bad news to let the emotions settle down, I think I still posted from a very discouraged and raw place. I know that I am struggling with depression over all of this.

My latest book, and I’m trying to read or listen to two per week, came to me as an award winning nonfiction recommendation per the search engine I use to find audible books. I did not know this, until I started listening to it, that it is the true story of a woman in her early 40’s who had terminal cancer. I don’t know her mental state at the end, but in the beginning, she felt that it was important to have two personas. The first was the one the public saw, which she wanted to project as a confident, fearless . . . “I’m gonna kick cancer’s ass” attitude. But the other one, was the real her and she worried constantly and deeply about the tests numbers, the ones that were telling her if she was going to live or die.  The real her was also quite–but reasonably–depressed. The real her was no better off than me.

I don’t want to create two personas, one with a smile and “correct attitude” toward the world, fate or God, and the other one the real me. But with that said, I will try to process information for a few days next time before I try to write.

For me, the rational me, I find it beneficial to not just pray, but to meditate, to try and relax, and to do research. I trust the numbers (statistics), which can’t be applied at the individual level, but can give hope to the hopeless. I reviewed the other treatments this morning and the over-all hope that I can make it 4-5 years, at which time I do think a cure will be available.

I immediately am praying that my red and white blood cells will increase so that I can function better, that my bone marrow biopsy will show minimal or no cancer (we already know cancer is there somewhere because it is still making bad protein) and that the low dose chemo will keep it at bay.  Thanks for all your kind words.

P.S. I don’t write these (last time) sob stories as “comment bait” or for pity, but it is my personal venting. Maybe I should type it up and burn it.

Mike

 

UPDATE:9/14/19

Cliff’s Notes Version: I got my first labs back yesterday, it was to measure the bad protein, which is produced by the cancer. Unfortunately, it is the same level as prior to the stem cell transplant.

Longer Version:

I debated in my mind if I wanted to try and give an update now or when all the tests are in. I decided to report what I know now, because Multiple Myeloma (MM) is such a complicated disease and when you share several data points at once, it can get very confusing.

As a reminder, MM is a cancer of the plasma producing part of the bone marrow. There are several different types of proteins that make of the plasma and MM can involve any of those or sometimes more than one. These plasma proteins are the building blocks of our antibodies, for fighting infection. This cancer causes problems, including death, with it either spreads locally like other cancers, (being inside the bone this usually causes fractures) or, like in my case, where the protein is produced so rapidly that it gums up other organs, such as the kidneys. My cancer involves the plasma cells that produce a specific protein, Lambda Light Chains. Those are notorious for killing the kidneys as the first symptom.

My cancer staging (and seeing how well the stem cell transplant worked) work up includes measuring the amount of these cancer-generated proteins, looking directly at the bone marrow to find cancer cells, and doing a full body MRI to look for places the cancer could be expanding locally.

The thing that we had hoped for, with a stem cell transplant, is that there is NO signs of cancer whatsoever. That is called a “stringent complete remission” and is as close to a cure as we have. Some of these people live more than 30 years without a relapse. This was our hope and prayers. Unfortunately, I have not made the cut for that hope. My plasma protein came in yesterday, and I saw it by mistake. I was looking for a different lab value on my portal and this one popped up. The blood level of this nasty protein, the one that killed my kidneys, was about 10 times normal, and about the level it was before the transplant. Denise and I took this information very hard… devastating would be an understatement. It means the cancer is still there and active. We will not know how much until the other tests is come in. My hope is still, that the other measurements are zero. If so, then it would probably mean that we continue our current plan of restarting chemo in two weeks, at a lower dose.

If the other tests come back with a significant amount of cancer (actually one cancer cell is significant) then I don’t know what we will do. But the options are to do aggressive chemo or even consider doing yet another stem cell transplant. The process was brutal and the thoughts of starting all over is very discouraging.

It is hard for me to sleep anyway, with neurological twitching all over, bad headache when I lay down, bronchitis with a cough for 2 months, and a pounding in my chest and ears from the tachycardia, which is related to my anemia. Last night I had additional sleep hindrances of a big, painful infection on my nose (probably from my very low white blood cells) … and the fear of more suffering, per this lab result that came in yesterday. I must have hoped and prayed 10,000 times, especially at key junctures of this ordeal. So many times, the outcome has been very disappointing. Denise and I have bad news fatigue. I even sense in my doctors that they even dread seeing me because I’m such a mess. I do everything they say to do, but still, the labs keep coming back screwed up. It was certainly disappointing yesterday. We are praying for some positive news after a long stretch of bad news and I really thought these numbers would be that good news.

Image result for cancer cartoons
This Cartoon Captures How Cancer Can Impact a Marriage

As I laid awake in bed last night, I began to pray that God—since He has not intervened in this process so far—would end my life now. I wanted to die in my sleep, rather than face more and more disappointments and suffering. It isn’t like I don’t love life. I adore it. I love my kids, my grand kids and certainly Denise. I have so much unfinished business on this planet. I really don’t understand those people who say they are looking forward to death (unless they are very old and frail). But sometimes it feels so hopeless and all your struggles to succeed appear to be in vain and the suffering unrelenting.

We do feel a little better, emotionally, today. But I still pray for one bit of good news, or that God would just take me home.  Mike

 

 

 

Update: 9/11/19

This was supposed to be week of peacefully laying low while we wait for the results of my cancer re-staging. However, once again we find ourselves in the middle of a medical crisis, the fourth such problem since I’ve been home.

About five weeks ago, for reasons we still don’t know, my bone marrow just stopped making red blood cells. I became quite anemic and had to have two units of blood just to function. That helped, but since then I’ve been quite anemic, which greatly constrains me and makes it very hard to exercise to recover or even to function.

Image result for cancer cartoons

Yesterday, with a routine blood test to follow the anemia, has discovered that the anemia is a little worse, my kidney function is a worse (after improvement last week), but the new crisis is that my bone marrow seems now to have stopped making white blood cells. My absolute absolute neutrophil count (one of the best measurements of white blood cells) has dropped from 2400 two weeks ago, to just 200 yesterday. This is considered an extreme low count and very dangerous.

The great frustration is that neither the dropping red blood cells nor the dropping white blood cells are a typical complication of a stem cell transplant. We don’t know why this is happening to me. While the low red blood cells greatly influence my quality of life this sudden and severe drop in white blood cells makes me very vulnerable to overwhelming and potentially fatal infections. To complicate matters, my hematologist is leaving town for ten days after tomorrow. We did do a bone marrow biopsy yesterday, which may shed some light on the why but I may not know the results for two weeks, if I don’t get into serious infectious problems by then.

There are days, like today, where I feel it must not be my destiny to survive this cancer. I have worked so  hard, only to have my efforts erased by unforeseen and even bizarre complications. I do want to live. I want to keep fighting but sometimes you become so mentally fatigued that you just want to give up. Denise and I both need some kind of break in this nightmare that never seems to end.

Please pray that these cells would be produced again and that this problem will be solved.

RAMBLINGS: Fatalism, Determinism, and Free Will

I have just started my work up today to “restage” my cancer. Our hope is there is none (remission) or very little (near remission). That is how a stem cell transplant supposed to work. However, there are chances that the cancer has returned already, and I must be emotionally prepared for that nightmare.

This morning I started with a large lab panel and then a bone marrow biopsy (my fifth and they hurt like hell). In a few days I will have a full body MRI. At this point, I have no information on the outcome. It will take 1-2 weeks for the picture of the cancer to come in to focus.

However, I did get results back from my basic lab tests, looking at my anemia, white blood cells, and renal function. To my great disappointment, all three of those are doing worse. Yes, I feel quite discouraged again… discouraged and frustrated. The symptoms corresponding with these results are also worse. I’ve done everything I know to do and have prayed my heart out for an improvement.

But moving beyond cancer for a moment, I have been thinking about the general ideas of fatalism, determinism, and free will. The reasons that this comes to mind is from me sitting in doctors’ offices after doctors’ offices over the past 9 months and asking (almost begging) the same question, “What can I do to change the outcome?”

The answer to my question is almost always, “Nothing.”  They will add, “No one knows why some get better and some don’t, but we have found no human behavior that seems to make a difference.”

Despite those words, I’ve read about every scientific study ever written on how to help failing kidneys, how to help stem cell transplants to work better, and how to help anemia (unfortunately, my anemia, per my hematologist, cannot be helped by vitamins, iron, or diet). For example, I did find one obscure study that showed exercise helped new stem cells to work better. For that reason, I walked 38 miles while in the hospital getting my transplant.

I will now try and define these terms (fatalism, determinism, and free will). While I (and most of you) know the meaning, I did go back and look at philosophy texts to try to clarify them. I will have to say, the definitions are not clear. I have chosen to make a gross generalization about the terms, which some students of philosophy will take issue with, but it is my efforts to keep things simple. I will also point out that I’m going to be talking about all walks of life, not a particular world view as I discuss these concepts.

The way I will use determinism, is really “atheistic determinism.” I have heard some atheists express this view that, from the moment of the big bang, everything has been pre-programed to a very precise course. While they don’t see a designer or planner for our lives, they see the laws of physics and chemistry as being unyielding. So, the energy, and direction of that energy at the big bag started this giant and precise clockwork in motion that resulted in our evolution and precise day to day behavior. That free will, where we can make choices and those choices alter history, are just an illusion. Maybe some of them will throw in quantum mechanics and say that two exact situations could yield different results at different times, so it can be unpredictable, but still determined from the beginning.

I will use the term fatalism to refer to the theistic view that a personal god has pre-programed our lives very precisely and we have no choice in the outcome of it.

So, in the first model, my cancer (and the future of my cancer) is already predetermined by the laws of physics and biochemistry and there is nothing anyone can do to alter its course. In the later model, God predestined me to have cancer and He has already planned the outcome, if I survive or suffer more and die.

Now there are certainly atheists and theist who believe in a free will, that we do have the power to make decisions that alter our own and even the world’s history. I may talk about that later (I don’t want this post to get too long).

During my evangelical years (and I will not go down that rabbit hole again) I attended a Presbyterian Church in America (PCA) church and even now, I attend a Presbyterian church. The term “Presbyterian” has its roots in one theologian, John Calvin (1509-1564). I will not discuss this much either, but Calvin had a more fatalistic view of Christianity than other sects. For example, one of the pillars of Calvinism is that God has pre-determined if you spend all eternity in Heaven or Hell, before you were even born. So, he controls your decision to be a Christian or not.

From my conversation with Muslims, they have a pretty fatalistic view of the world too. They emphasize that Allah is so powerful that nothing happens unless he wills it to happen and humans have no real free will, (although disobeying Allah, as if we had a choice, will bring a swift and severe punishment).

I had a good friend in college by the name of Owen. He was part of our Navigator discipleship group and attended our same PCA church. Owen and some other men I knew, started a Calvinistic Bible study. It was led by a guy who had finished a Presbyterian seminary. Before long, Owen started to tell me things that they were thinking. If God determines whether you will be a Christian or not, and if God micro-manages all events of life, then there is absolutely no free will. If there is no free will, then why pretend there is. For example, why even study the Bible? Why even go to class and why even pray? Nothing matters.  He finally got to the point that he told me that every heartbeat in his chest, every breath he takes, and every thought in his head was put there directly by God. We called Owen’s group “Hyper-Calvinistic,” although he rejected that term. He said that they were simply taking what we claimed we believed to its ultimate conclusion.

Di Filippo Marionette

A lot of my views have changed over the years. Somehow life seems to rub errors in our thinking, in our faces. I now have a blend of ideas. I do believe in a personal God, who created the cosmos. I also believe that His wonderful laws of physics and biochemistry set up some forms of determinism (like a giant clockwork) but that free will is also there. I also believe that this material world is broken, with defects, which cause suffering and that suffering is not from God. We do have choices to change some things. While I said before I’ve yet to see a real supernatural miracle, I still pray all the time. When my doctors tell me that I’m riding a train of destiny and there is nothing I, personally, can do to change its course, I feel that the only thing I have left is prayer. Will it work? I don’t know. I’ve seen some successes, pockets of good news. Getting off dialysis is a big one. But I have set back after set back and at times, after a long chain of disappointments, you can lose all hope. I know it is out of my hands.

But I think the typical Christian, and sometimes the atheist, don’t think these things through. Like Owen said, he was simply trying to take what we claimed we believed to the philosophical end. He arrived at a strange place behind the looking glass where he just laid in bed waiting for God to move his arms and legs as if he were a living marionette.

We throw out clichés like, “All things happen for a reason,” or “God is in control,” or (in the case of the atheist or sometimes pantheist) “this was my destiny,” but how far do we take this? We need to, sometimes, sit with a cup of coffee and stare into space and take our beliefs to their ultimate conclusion and if we end up behind the looking glass, it is time to rethinks some of them.

In the end, Owen wanted to try and break God’s hold on his every thought and action because he was about to go insane. So, on a wintry night in Nashville, in 1977, he stepped in front of a speeding freight train… and was killed. He felt it was his one and only act of free will.  Mike

 

 

 

 

Ramblings: Our “Defining” Moments from Me-Too, to Cancer

I have heard women in the “Me-too” movement say things such as, “I didn’t come forward sooner, because I didn’t want my rape (or other sexual assault) to define me.” The sad thing, they are correct as it could define them.

I remember in college there was a big story about a co-ed being raped. It was controversial, because it was a date-rape situation and that was somewhat new to our lexicon (1978). I had a close relationship to this story because, I was working the ER (as just a nursing assistant) the night she was brought in by the dean of women students, for a rape-kit investigation. I was involved with her care. The second reason, was that the perpetrator turned out to be a friend of mine. Not a close friend, but more of an acquaintance. He ( I will call him Ned) had attended our discipleship, Navigator group and our evangelical church. I also had special interest in him because he was from an foreign country, coming to our campus as an exchange student. I’ve always have had a curiosity about the world at large.

I was surprised that Ned did this, although having been there in the ER and seeing how distraught the girl was, I have no doubts that it happened. But Ned was very quiet, gentle, and, like I said, a causal attender of our discipleship group and church. The only thing that I think was a sign that he was capable of doing something like raping a girl, was that he was from a royal family in his home country, very rich, and had (in my opinion) a sense of entitlement. It was odd, but the embassy of his country got involved in the case and, somehow, was able to to protect him from prosecution, by sending him back to his home country.

But this girl was defined by coming out about the rape. I hate to say this, but she was seen as a bit “slutty” after that, due to nothing she did wrong. I heard her tell her story in the ER. It was just a first date and things were going well and then Ned forced himself on her, and punched her in the face in the process. It wasn’t like these stories where the girl was drunk as a skunk (as if that mattered) and people would question her judgement. I also heard a lot of people in the evangelical community, on campus, trying to side with Ned. They knew nothing of the case (and I couldn’t reveal my inside story because of medical confidentiality), but evangelicals tend to protect their own (like Judge Kavanaugh).

Since then, I’ve had many encounters with rape victims as a medical provider, especially when I was providing student health services at Michigan Tech University. I always pushed the girls to go to the authorities, and I often encountered their hesitation because of the fear of being defined by the event, especially if the perpetrator was a jock, or as in one case, a campus Christian (evangelical) leader (he will probably be a judge. . . or president one day).

So any big event in someone’s life can have the tendency to define them, at least in the eyes of others, including things like being a war vet, an immigrant, or the victim of any tragedy. Cancer is no different. For those of us who have been enlisted, or I should say drafted, into this horrible war against this menace, it seems to define us.

I am a bit socially isolated these days, being warned by my care team not to be involved with public gatherings of people. I spend most of my time alone, with just my dog at my side. But when I have had social encounters, I sense the strange awkwardness. The most awkward situations is where acquaintances avoid the “C” word, as the elephant in the room. They are afraid, I believe, that they might say the wrong thing so they pretend, with my bald head glistening in the sun, that everything is normal. Sometimes it becomes difficult for me (in a very selfish way) that my cancer is not brought up, yet the other person talks for 30 minutes about their frustration with a sore toe nail, or how they can only run ten miles at a time, and how they know (due to their family history) that they may only live to be 85 and they wanted to live to be 100, and how they have trips planned to the far corners of the earth. I must sit and listen and smile and try to remain interested. In those situations, I do wish they would just ask me how’s it going or how do I feel. But they are afraid to even bring it up. As I’ve said before, the only thing someone can say (and it happens very rarely) that would  piss me off is where they suggest that my cancer is my fault. The health nuts live in an imaginary world that if you just eat right and exercise, you will never have cancer. Therefore, I must have done something wrong. Few evangelicals want to blame me for not having the right kind of faith.

Now, when I say I don’t want my cancer to define me, it doesn’t mean I don’t want to talk about it. I don’t want to just talk about it and nothing else as if I’m just a big cancer blob. I regret when I’ve talked about it too much, especially when I realize that the other person is suffering as much or more than me and I didn’t talk enough about their health plight. I’m still Mike and while cancer, and the symptoms of it, control my moment by moment living, there is more to me.

One example of cancer trying to define me comes to mind is my recent rant about the subculture of American Evangelicalism. First, I will confess that I sometimes (but not all the time) think it was a mistake to raise my controversial questions about God, the American evangelical subculture, and fate on this forum. So many people seem to think these question are the result of my cancer. It is not! If you think so, you don’t know me. I have been writing about the post-evangelical world for over 20 years. I wrote a book about it (Butterflies in the Belfry) and have contributed to other books about the topic. I’ve had three very active blogs about this topic for over a decade. I’ve written published articles about this. As I said before, and this where I may have had a lapse of judgement, is that my old blog followers were a different set of people. Most of them, like me, were post-evangelical. We understood each other, although we may not have always agreed with one another.

But now, I have (in last count) 166 new followers, and the vast majority are sincere people who just wanted to know about my struggle with cancer. I am deeply grateful for the interest. When people from this new crop read my ramblings about God, evangelicalism, or philosophical thoughts about fate, etc., they immediately think, “Poor Mike. The cancer has caused him to doubt God, how tragic. Now he’s not a true believer.” This is where I don’t like Cancer defining me.

After my last set of articles about why people are leaving the evangelical church the response (at least through the group of personal e-mails) wasn’t, “Oh, there is a problem, what can we do about it?” but “Mike, I see you are in a personal crisis from your cancer and unless you repent, you are going to spend eternity in Hell.” That part is frustrating and makes me even more pessimistic that the culture of American Evangelicalism can be redeemed because they have no interest in introspection only preserving.  I will try to avoid talking about evangelicals here again as I didn’t realize how many of the 166 new followers were evangelicals. Denise had warned me that I was going to get into trouble doing that (she is a far more private person than me), and I should have listened. I also offended a lot of southern people and family by talking about being raised as a racist in the south. Every word I said was true and I did not say it to offend anyone, but apparently I did. It was meant to be a point of self-confession.

I’ve never cared a lot about offending people, if I know I am speaking the truth. The only influence that cancer has had on my ramblings is that I care less about offending people because I realize how short life is. I don’t say things to be cruel, but I don’t hesitate to criticize where criticism is due.

I will avoid stepping on evangelicals toes again, because it see it as fruitless. I will raise more philosophical questions, the same questions I’ve been raising for thirty years. I find that many people are far more comfortable in speaking in cliches than thinking their positions through the ultimate ending.  That is my only goal, to get people to think. Mike

Rambling: Two Great Books, and a Deep Question about Fate

I’ve had the opportunity to read (mostly listen) to 25 new books and watch about 120 Curiosity Stream (science) movies this summer during my tango with the devil (stem cell transplant). My book genre of late has been fiction. However, I just read two back to back non-fiction books that were outstanding, and I wanted to share those here.

The first was In the Kingdom of Ice: The Grand and Terrible Polar Voyage of the USS Jeannette. This book is a highly researched historical work, following the high drama of the failed voyage of the USS Jeannette, in its attempt to be the first to reach the North Pole. The day by day (sometimes hour by hour) details that kept me so captivated that I laid awake night after night listening to the MP3 audio book.

The second book, very different from the first, is Pilgrim at Tinker Creek by Anne Dillard. It is hard to describe this book. It is called, by some, a narrative non-fiction. Anne calls it a work of theology. To me, it is a book of poetry. It reminded me a lot of Thoreau’s Walden.

It has been a while since I’ve read Walden, but in some ways, Dillard’s book seems better. At least the pace is faster than Walden, and the observations of nature is at least as rich. I think Dillard had access to more information about nature in 1973 (the year she started writing it) than in the mid-1800s when Thoreau wrote his work. She also is a master of that information, so much so, that I had assumed that she had a PhD in Entomology at one point. But it is a book that is well worth the read.

As I have attempted to write, non-fiction is the most difficult, because of the research that is required (and the lawyers demand precise facts). As I read Anne Dillard’s words, her descriptors and syntax, I felt like a small-town mediocre high school basketball player who thought he was decent at the game… until he watch a NBA team practice.

An Exercise in Thinking about fate, from In the Kingdom of Ice: The Grand and Terrible Polar Voyage of the USS Jeannette.

I don’t want to give away too much from the book, but one big question was raised. I don’t have an answer but would like to see what others think. It is a tragic story about an attempt to reach the North Pole. In one part of the book, one group of sailors are stranded in the very northern tip of Siberia, in the dead of winter. They are trying to make their way south, 1,000 miles, to some civilization. They are sleeping outside in the elements and the nighttime temperatures are in the minus 40-degree range. The year is 1881. They have no food, having finished off their supplies and the native animals have all but disappeared during these cold and stormy months.

These men appear to be very religious (typical American Christian of the 19th century). Their leader, commander George W. De Long, was a devoted Christian man, who led the sailors in daily devotions. As they were starting to starve, he had a devotion from Matthew 6:25-34

25 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? 26 Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27 Can any one of you by worrying add a single hour to your life[a]?

 

28 “And why do you worry about clothes? See how the flowers of the field grow. They do not labor or spin. 29 Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30 If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you—you of little faith? 31 So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ 32 For the pagans run after all these things, and your heavenly Father knows that you need them. 33 But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

The commander told his men that he felt confident that God would provide for them in this moment of crisis and felt like this was a promise from scripture.

However, over the next few weeks, the suffering intensified, and the men had nothing to eat. They boiled and ate their shoes, their seal-skinned coats, yet one by one, the suffering emaciated men succumbed to starvation and died. The last man alive, the doctor, attempted to eat his own hand. Little did they know, the natives had caches of abundant food (deer meat and dried fish) hidden throughout the tundra and forest.

So, the big question to think about is, where was God in all of this?

Some of you know of the story about the Rugby players whose plane crashed high in the Andes in 1972 and the book and movie about it called, Alive. They were stranded for weeks and in the end, some of the survivors cannibalized the bodies of their dead friends. I was in college the next year and had a discussion (as a new Christian and evangelical) with my pastor, asking him if this was sin to eat part of someone’s body. The survivors, most who were catholic, described it as like communion, where you eat Christ’s body.

This pastor said it was sin because they did not trust God. If they had trusted God, 1) they would not have crashed and 2) God would have provided food or a way off the mountain. That answer was not reassuring to me.

I will give several viewpoints that someone might have. I do not mean to stereotype any group here.

  • An atheist might say: There is no meaning in this. They took a real risk in the real world and ended in a place where food is scare in the wintertime. It is simply a case of cause and effect with a lot of bad luck (there were several issues of bad luck including bad maps, wrong information about currents, one of the worst winters in years, and some of the worst ice on the Bering Sea).
  • A pantheist might say: All things work together for the good. If it is not good, then it is not the end of the story. That these men will come back as new people and in a better place because of their sacrifice.
  • A Buddhist might say: These men had the opportunity to have the ultimate experience in denying the desires of this world and will transcend that fatal outcome.
  • A Muslim might say: Apparently these men were struck down by almighty God for their arrogance in trying to find the North Pole, to make themselves like God (or for some other sin.)
  • One Christian might say something very much like the Muslim.
  • Another Christian might say: It was a problem of faith. Commander De Long may have prayed for God’s help, but he, nor his men, did not trust God, therefore their prayers were not answered.
  • Another Christian might say: This was clearly an attack by Satan as these good Christian men were living in a foreign land, a land of wild native people who believed in witchcraft and spells (the natives did have their own superstitions, but, were considered Christian and members of the Russian Orthodox Church).
  • Another Christian might say: God doesn’t do miracles on a regular basis and this was a very risky undertaking, where bad things can happen to good people because it is an imperfect world.
  • Or . . . write you own conclusion.

 

 

 

 

 

 

 

 

 

UPDATE:9/3/19-Progress

I was going to wait until the end of next week to update as I will be having my important cancer staging tests on Tuesday (Sept 10). But I wanted to report a bit of progress from my labs today.

Out of the blue I had a severe anemia come on about three weeks ago, making me feel horrible and requiring an urgent transfusion. The effects of a transfusion are for about two weeks. My red blood cells (hemoglobin and hematocrit) have improved since last week, meaning my own bone marrow is back to making red blood cells again. I’m no where near normal but better than I have been in three weeks. So, we think the culprit was an anti-viral medication I had to take for four weeks, which is notorious for causing anemia.

My renal labs are much better this week too. They had worsened for several weeks (making me worried about having to go back on dialysis) but then was stable last week and now has improved dramatically this week. My BUN and Creatinine (both waste products from protein processing) are still about double the normals, but not triple or quadruple the normals as they were a couple of weeks ago. This is encouraging and we believe it too was from a medication that I had to take, which is hard on the kidneys.

I consider myself very lucky and thankful for my kidneys recovering. I was told many times by people at the dialysis center that they would not recover and I would be doing dialysis for life (they thought my hope was me being in denial). After having a lot of bad luck this year (just .04% of people get myleoma in their lifetime and of those .04%, only 25% have kidney involvement), I am very fortunate to be one of the 10-20% with myleoma and renal failure, and then their kidneys recover enough to get off dialysis.

My biggest hang up, compared to where things could be is not much, is tachycardia (fast heart rate). It started when I was very anemic but has not improved that much, although my anemia has. We don’t know why, but it does not appear to be anything serious. It does make it very hard to exercise.

They declare someone a “Bone Marrow Transplant Survivor” at day 100 post transplant, because most of the serious out comes and deaths occur during the first 100 days. I’m at day 80, with just 20 more days to go to reach that milestone.

I will still update again by the end of next week when I know what my cancer is up to.  Thank you for your prayers and concern. Mike

 

UPDATE: 8/28/19

I don’t mean to post something every day, but I just had my follow up appointment with the oncologist and thought it was time to update, especially since my last medical update was so gloomy. This might be very long, (you can cherry pick which topics interest you, if any) but then I won’t need to do an update for several weeks.

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  • ANEMIA: My most recent set back was a rapidly falling hemoglobin and hematocrit. I’ve been quite anemic since my diagnosis in Jan, however, this was suddenly getting severe. I did have two units of packed red blood cells last Tuesday night (Jan 20). Before the transfusion, I could barely walk from the house to the car without becoming very short of breath and a heart rate of about 160. This was quite discouraging (as you can tell from that posting). It took about 24 hours before the transfusion started to help. But then I did feel better, with an energy level of about 50% of normal rather than 10%. I worked in 13 miles of hiking and walking while I could over subsequent three days. Then I started to slip. My hemoglobin and hematocrit as well as the associated symptoms have since remained stable, where my energy level is about 30% of normal. We still don’t know the cause, but we are hoping it is an (I call it poison) antiviral drug (Valganciclovir HCL ) that I had to take to treat an CMV infection. It has a Blackbox warning of causing severe anemia and death, but if I didn’t take it, the mortality of the virus was quite high. I took my last dose on Sunday so now we will see if my bone marrow bounces back.
  • NEUROLOGIC: I’ve mentioned before that my first symptoms of this mess were neurologic. In December, I started to have twitching throughout my body, muscles jerking, weakness in my left leg, difficult swallowing, and if I coughed or sneezed my entire abdomen would go into a painful spasm for about a minute. I was making a self-diagnosis assumption that I had something like ALS. Then the first lab, in Jan, showed that I was in renal failure (I didn’t see that coming). It took a week or so in the hospital to figure out that the renal failure was caused by cancer. We, my nephrologists and I, made the assumption then that the neurological problems were caused by living in renal failure for who knows how long. But still my symptoms were odd and sometimes I felt I was not being believed. Those symptoms, thank goodness, improved some during my stem cell transplant, and part of that improvement was getting off dialysis (which always made them worst). However, this past week, those symptoms (which had moved to the background) became bad again. But now, after some research, we think that these bizarre symptoms may be a rare, “Paraneoplastic-Isaac’s Syndrome.” While it does not give us any treatment, it explains my symptoms. I still pray in time these will resolve are they are quite troublesome. 
  • RENAL FUNCTION: While my kidneys are still shity, they are stable. I have no fluid problems, my electrolytes are normal, but my BUN is 58 and my Creatinine is 3.4. Words cannot express how grateful I still am to be off dialysis and have these tubes out of my chest. It is very hard having to go on dialysis, but on top of everything else, it pushed my quality of life to a be zero. I continue praying that they will improve and never worsen.  
  • CANCER STAGING: Most of us are familiar with the concept of “waiting for tests results.” The most common one, which comes to mind, is the woman who has a density on her mammogram and then needs a biopsy. During the time of waiting for the results of the biopsy, it can be nerve racking. I never knew, before now, how cancer patients must face the infamous “tests results” over and over and over, with a huge amount riding on the results. If the test comes back with one reading, it means that you will face severe torture and death in the near future. If the test comes back with another result, it could be that you live a long and healthy life.  

On September 10, I start my cancer re-staging. This involves a blood test to look at       my cancer cells (precisely Lambda Lite Chain Plasma Protein), a bone marrow             biopsy   (my 5th), a full body MRI to follow up on one boney lesion in my left                 scapula.  We expect, after a stem cell transplant, that there will be no cancer or only a slight trace. That’s how well a stem cell transplant can work. Now, that is still not a     cure because Multiple Myeloma usually comes back, in months or even decades.

However, sometimes, the stem cell transplant fails, and the cancer is as bad as ever     or   even worse. That would be devastating and put me in a real quandary. The only hope then would be starting all over with another stem cell transplant. That process    was so brutal, I’m not sure I would do it. I say it was like going to summer camp at    Auschwitz. Yet, those who had donor stem cells (and I used my own) have it even        worse than I did.

  • CONTROVERSIAL POSTINGS: I have had a blog for about 15 years. That is where I posted controversial topics, often related to the post-Christian world of Western civilization and the failure of Evangelicalism. I had a handful of regular followers who share much of my perspective. Then, after my cancer diagnoses, I used this same blog site for my medical updates. I’ve had over 160 new people sign up for those. I am deeply grateful for that support and so many people who care about me. However, through my “Ramblings” I continued to post some of the controversial topics, and to a different audience than I had before. I realized after my series on “Another Evangelical Bites the Dust” that maybe it was not a good idea to include my old type of postings with this new audience, as some have found some things, I’ve said offensive. The one thing that my cancer has done to me, is to make me not care about offending people, if I speak the truth. However, with that said, I will not post my last paper on this topic. If someone really wants to read it, they can contact me, and I may send them the link. I will still do “Ramblings” here about other things. 
  • FUTURE CAREER: The best way to state it, is my career as a headache specialist may or may not be over. I never wanted to see it end this way. Time will tell, but my limits on being exposed to infections, as well as my extreme fatigue, prevents me from returning to work right away. This may or may not be the death nail in my future return. Time will tell. 
  • WRITING: If I cannot return as a headache specialist, I am returning to writing. I have just finished editing my new novel, Christina Athena; The girl with the headaches. I will have it professionally proof-read, and then it will go to press. I am also wanting to get back working on an old novel, Rock Harbor. I also have one more nonfiction book in the back of my mind, which I want to write, and it is called, Meta Enigma; the Big Question that Shames all Answers. I have the opportunity to write part of a PA textbook, the part on headaches, but I haven’t decided if I want to commit to just an arduous task. 
  • VISITORS: I may have scared visitors away when I first came home. I was concerned about my endurance (I was sick a lot when I first got home) and being exposed to infections. So, since my return home over six weeks ago, I have had no visitors. Now, I am very grateful to Jerry, whom I walk with about 3-4 days a week. I also know that Curt and Don have offered to walk with me, but Jerry seems to beat them to the draw. Diane offered to come and visit, but I got too sick that day. But that has been the extent of my social contacts (except for Greta my Saint Bernard, but she doesn’t talk much). In my notebook about post-transplant recovery, social isolation is big concern. I can’t go out in groups, such as Church, concerts, lectures, meetings, or even street fairs, to avoid infections. But I am open for visitors. I still get tired after 30-45 minutes.

 

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 Mike