UPDATE: 5/21/19

After stimulating my bone marrow for 4 days and then collecting stem cells for two days, tonight we reached 10 million stem cells, enough for two transplants. I was then discharged and we are back at our home-away-from-home, home.

stem cell harvesting
Stem Cell Harvesting

Denise had a visit with her dentist in Anacortes for a broken tooth and a follow up with her doctor for a problem. All is well and she seems to be doing well. I am thankful for that.

We will visit with the out-patient Seattle Cancer Care Alliance for a few days, then I will be re-admitted for the really difficult part of burning out my bone marrow and giving me my stem cells back. So, we are at day 21 of a 100 day process. We have completed the 14-day process of testing, then the 7-day process of stimulating my bone marrow and harvesting stem cells. Ahead is the process of burning out my bone marrow with chemo, giving my stem cells back, and watching me as I recover. This  next step should start sometime next week.

UPDATE: 5/18/19 Great News? Maybe.

I just finished day two of bone marrow stimulation, to produce more stem cells, with filgrastim injections. The first 30 hours went very smoothly, however, the past 5 hours has been a little rough with bone pain and chills. But, it seems to be getting better. I have one more day of this, then testing to see if I have enough stem cells and if so, they will be harvested on Monday or Tuesday.

Some Good, Potentially Great News!

I was scheduled to have a second pair of catheters place in my chest on Friday morning. I was in the pre-op area when the decision was made that my one pair of catheters can be used for both dialysis and stem cell collection-infusion. This is not a done deal as there is still some discussion among the team members if this is the right thing to do.

Speaking of dialysis, I had dialysis at the U of Washington Medical Center this morning. While doing dialysis, I met with two nephrologists (kidney doctors). They too had a discussion and after reviewing my labs and history, and came up with a consensus to end my dialysis. Now, I was fooled once before and I say this with guarded optimism. My kidneys still function like someone has beat the shit out of them with a baseball bat. It is also a possibility that the treatments over the next two weeks will damage them beyond repair. Yet, if I don’t do the treatments they will be for sure damaged more by cancer cells.

However, the nephrologists were in agreement that my kidneys have improved enough to end dialysis . . . for now. You know how much I’ve longed for this day. I said I would dance in the streets when and if this day came. The only reason that I’m not dancing is because, 1) I’m not allowed to leave the floor, 2) I feel very crappy tonight, AND 3) there is no guarantee that I will not have to go back on dialysis in a couple of weeks. But if my renal labs remain stable, this means that these tubes in my chest may come out in 2-3 weeks.

It is hard to overstate what ending dialysis would mean for me. It would mean that my risk for death from the cancer would go down significantly. It would mean that some day I can travel again (not in the coming 6 months because I will be immunocompromised from the stem cell transplant). It may mean that some day these awful twitches and jerks might get better (one nephrologist felt that the dialysis could be aggravating these symptoms).

I’m not going to post every few days from the hospital like this, but this potential good news was too good not to share. Please pray that 1) today was indeed my last day of dialysis, forever, 2) my twitching would end, 3) We can  harvest enough stem cells, and 4) I can tolerate the process that is coming.  Thanks for your prayers, Mike

Update:5-16-19

The two-week pre-transplant work up is complete. It appears, that except for my bone marrow and kidneys, I am very healthy. This means that I’ve been cleared for the stem-cell transplant. This is a big deal with great complexity.

Tomorrow morning I will be admitted to the University of Washington Medical Center. I will have a second pair of catheters put in my chest at 6 AM. The ones on the right are still for dialysis and on the left will be for the transplant.

Over the week-end I will have a bone marrow stimulating medication, which will cause my bone marrow to create excessive stem cells. Around Monday or Tuesday (5/20-21/19), I will start the 2-3-day process of harvesting my stem cells. It is a machine much like the dialysis machine that runs for 4-5 hours each time.

Once enough stem cells are harvested, I will be discharged, around  5/21-23/19. I will have about 5-7 days off (clinic visits each day) and then re-admitted sometime next weekend or soon after (5/26-28). Then I will have my bone marrow burned out with intensive chemo. A couple of days later, my stem cells will be re-infused. Because of my renal failure and the caution needed, I will remain in the hospital for 2-3 weeks. Denise will continue living in Seattle, close by.

The good news is that my cancer cells have dropped drastically. My bone marrow has had drastic improvement as well. Both good results were the results of the chemo I was receiving in Anacortes for the past 3 months. Additionally, a careful survey of my entire body found no bone lesions, which is a good thing. There is one bone marrow pocket of cancer in my left scapula (shoulder blade) which may need radiation after the stem cell transplant.

I feel pretty well. After being off chemo for 4 weeks, I feel almost back to normal, except for my neurological symptoms (related to renal failure). This gives me hope that I can feel well some day. I will have far less chemo after the stem-cell transplant.

My kidneys have improved according to the best test available, creatinine clearance. It was 2.5 when I was diagnosed, and it is 24 now. Normal is above 59 (see the graph below). They still have a ways to go.

Denise is going to take a break while I’m in the hospital and return home. She needs to take care of her own health issues at that time.

Creatinine Clearance

Prayer Request:

  • Pray for my kidneys to heal.
  • Within each step of the process, severe side effects are possible, including death. During the chemo burnout of my bone marrow, severe side effects are common. This process is fatal in 5% of cases. Pray that things go smoothly.
  • Pray that Denise can get some good rest and that she will have peace that I’m in good hands.
  • Pray that the stem-cell transplant works and that my cancer cells will be pushed down to zero. This would give my kidneys the chance to heal.

 

RAMBLINGS: In Praise of the Caregiver

I will start with a statement that many will take objection to. The spouse, parent, child, or significant-other of an ill person has no obligation to take care of that person. Yes, there are some societal expectations, but no, true obligations. I say this with confidence because I’ve witnessed several times where the significant-other person (including spouses) walked away after a terrible diagnosis of their loved one.

In one case, I remember a 34-year-old woman crying in her hospital room. She was acutely ill, having just been diagnosed with acute leukemia. She shared that morning that her boyfriend, who she had been living with for several years and who had been in the hospital with her the previous two days, had announced to her the previous night that he was leaving her. This new diagnosis was more than he could bear, so he was getting his stuff out of the apartment and leaving.

Closer to home, one of the men in my Multiple Myeloma online support group, shared that his wife of 28 years did the same to him. He is in—almost—the same place I am with the disease. He is newly diagnosed and facing this daunting course of chemotherapy, followed by stem cell transplant. I don’t think he has renal failure and having to do dialysis. His wife, like the previous described boyfriend, said it was more than she could handle, and she was leaving him. She wanted out before the difficult course began. I felt grief for him.

Denize at dialysis
Denise Bringing Me A Cup of Ice Chips During Dialysis in West Seattle

I know of countless cases where children of an ill parent quickly puts them in a skilled nursing facility at the slightest inconvenience of care. Certainly, there is a place for these facilities but these adult children, which I’m talking about, made no efforts to help their parent but kept a distance and made the choice to not be involved.

My mother, and aunt (my father’s sister) were caregivers to my father. He was more than most could bear, physically. He was about 200 lbs, six foot and immobile. He was suffering from a brain injury after a fall, followed by a terminal lung cancer diagnosis. My mother’s interpretation of her marriage vows was that no one would take care of her husband, except her. This would be true as long as she had the strength to stand and the air to breath. I didn’t agree with her and wanted to get in-home help, but she would have nothing to do with that.

I’ve made it clear to Denise many times that she is not obligated to walk with me on this journey. I’m serious about this. I can make it on-my-own, barely. To her, such an offer of release seems absurd.

Multiple Myeloma, like all cancers, is intrusive. It has totally disrupted my life, ending all thoughts of a good future. It has taken away my career, my financial security, well-feeling, and practical hope for normalcy. It has done all those things for her as well, but for her, it is an issue of choice. She could go her own way and leave me. At least she could stay married to me, but still save her career, her hobbies, her friends, and let the medical system take care of me. She has, of course, chosen not to go that path.

The cost to Denise, expect for the physical discomfort, is the same as the cost to me. The disease intruded into the tranquility of her life like it did mine. The difference is, she has entered this nightmare willingly. There is something about heroism, where the level of valor is measured by the individual’s freedom to choose the hardship. As I’ve said before, I am no hero because this came upon me without a choice. My choice it is between trying to live or die and the difficulty of each is severe.

Within this gloomy darkness, I am deeply blessed and feel equally loved. How could I ever repay her?

Mike

 

 

A Stoic and Hedonist Walked into a Bar, and it was the Bar of Suffering, Part III

I have described some of the extremes in the social views of the stoic and hedonist. I will now look at these extremes from the individual perspectives and then try to arrive at the healthiest approach to suffering.

The individual hedonist, if taken to the extreme, would find him or herself with uncontrollable sobbing at the bottom of a pit of self-pity. They would long for the entire world to be drawn into their sorrow, standing at the brim of this pit, looking down at them. The victim’s hope is that their own tears, along with that of the world, would somehow, set them afloat, allowing them to rise up and back into a painless world. But we know that can’t happen. It is futile to try and suck the entire world into one’s own pain. It is magical thinking that somehow the sufferer’s tears, and the tears of the world, could ever bring the mother or father of a dead child back into a painless world. The same is true for the widow or widower or, like me, the one who has lost their health and future. There are not enough tears in the universe to accomplish such a task.

Bad day

On the other hand, the extreme stoic would bury their emotional response to their pain. While not denying its existence—like some hedonists—there would be in denial of the psychological consequence of such suffering. They would go about their business, pushing through, as if nothing was at dis-ease. The pain would be orphaned, set adrift into the dark sea. But there is a consequence, and there always will be. Suffering will pay its dues one way or another. In the end, the stoic doesn’t win. The epitaph might say, “They Suffered but Never Complained,” but beneath that granite stone will finally rest a tortured, and lonely soul.

 

I have been tempted in both directions. It isn’t like the proverbial angel on one shoulder and a devil on the other, each alluring me to their own course. These extremes are like two devils, twins with an ambition to lead astray.

Stoicism may have cost me my kidneys. I had some subtle symptoms as far back as November, but I ignored them. But, speaking in my own self-defense, they were not well defined. Some twitching and a bit of anorexia, that’s all. But I pushed through this, never missing a day of work. I also had fatigue (at my diagnoses in January my hemoglobin was 6.8, which is below half of normal) but pushed myself to exercise harder and harder. If I had gone to my doctor, then . . . if only. However, I will not give “regrets” the light of day or they will consume me.

On the other side, there are days in which I would succumb to self-pity. It too would consume me, if allowed. The late Christopher Reeves said it well. He went from being a famous actor, and a picture of perfect health (the ideal actor to play Superman) to having a cervical spine fracture and being a quadriplegic, in a millisecond. He said later, that he allowed himself only five minutes of self-pity each morning. Then he had to force the thoughts to stop . . . otherwise, it would dominate his world. Self-pity isolates you from the world because it is defined by the “self.” You can get so far into it that you eventually can’t see past your own pain.

Lessons from Job

This morning I decided to listen to the audio version of the book of Job from The Message, a contemporary paraphrased Bible. The things that stood out were the following:

  • God had nothing to do with the cause of Job’s suffering. It was not his plan or act.
  • Job voiced his suffering in a very dramatic way. He was brutally honest about his emotional turmoil. In his society he was considered a whiner. Certainly, his friends saw him that way. I think in our society he would be a relentless whiner too. God still saw Job as an example of a man of spiritual integrity and never criticized him for his whining or self-pity.
  • Job’s friends did the right thing at first. They just sat with Job, sharing in his suffering, and said nothing.
  • Job’s friends all, eventually, fell into the trap of saying the wrong thing, implying that Job’s suffering was somehow his fault. They were very articulate and confident in their arguments.
  • I was really impressed with Job’s confidence in the fact that he had done nothing wrong to cause his suffering and was not persuaded differently by his equally confident friends.
  • Job expressed the loss of hope in a very graphic way. He described how he and hope would be buried in graves side by side. If you lost sight of his terrible losses, you would think he was a drama queen.
  • God did not rebuke Job for whining or voicing his suffering, but for bringing God into the suffering’s cause, as an agent of injustice.

In Praise of Pity

 After listening to The Message, in one sitting (on my lake while fishing), I started to have a new thought about pity. I will first say that there is still the possibility of misapplied self-pity. Someone can have a minor-league disappointment and then wallow in self-pity for months or years, leaving them emotionally paralyzed. However, I’m not sure that pity, itself, is a bad thing in the major league events. I can say, honestly, that I have pity for the children who are caught up in wars, such as in Syria or Yemen. I expect them to have some self-pity, where they feel the pain of what they have lost. The same is true for the parent who has lost a child or a wife who has lost a husband or vice versa.

I feel guilty when I express my agony. It the stoic voice within me that says, “Keep your emotions to yourself.” Even before all of this I was accused of being an “over-sharer,” especially by some of the readers of my book, Butterflies in the Belfry.

I think our society has a hard time with the word “pity” whether it is self-pity or pity from an observer. The word seems to carry undesirable connotations. However, within the proper context, is a useful expression of the emotional suffering. It is one hedonistic virtue that may have merit. However, the true hedonist would embrace a malignant form of pity, that would not be helpful. It would be a pity without hope. Job didn’t have hope, but hope was realized anyway.

If there is anything of positive value that we can draw from the stoic, it is endurance in the face of suffering. However, the sufferer must not use their stoicism to deny the reality of their suffering or to mute their expression of pain. They must also not apply purpose to the suffering. There is no “bright side” to suffering, although we can try and make the best of it.

The Observer

Before I close this whole series of thoughts, I want to come back to the role of the observer. Before I start this last discussion, I want to be clear that I’m not making these points because of people who have gotten it wrong when they have approached me. Most people have been generous and thoughtful when they have shared their support. There are a few exceptions. But I want to approach this from the angle of my own role as an observer of someone else’s suffering. As I’ve mentioned before, for the past 38 years, I have been a professional listener to people who are suffering. But I still have things to learn.

When someone complains, as Job did, about the agony of their suffering, sometimes stoic and hedonistic voices come in response. I wanted to illustrate some of those.

Sufferer: “I am exhausted from the pain. Some days I don’t think I can go on. It is relentless and I regret the day I was born.”

Stoic # 1: “Oh, you shouldn’t say that! I’m glad you were born. You are letting this to get the best of you. It could be worse. I knew someone who had twice the troubles as you and they never complained.”

Hedonist # 1: “Oh, I’m so sorry for you. What a horrible existence. You deserve better than this, You have been cheated by (fill in the blank) ____ (God, your doctor, those who made the chemicals that made you sick, the person who caused the accident). You need to take care of yourself. You need to go to a spa and have some pampering. It always lifts my spirits. Go out on the town, you deserve it.”

Stoic # 2: “You need to let go and let God have this. He gave you this suffering for a reason and you should be proud he has chosen you to bear it. There is no reason to complain. What doesn’t break you, makes you stronger and you will come out a better person.”

Hedonist # 2: “Oh, it will be much better. You will run again. You will dance again. You will eat all you can eat again. Have you talked to your doctor about a stronger pain pill or smoking enough pot so that you don’t even care anymore?”

crying together

In conclusion, I think the following would be examples of appropriate responses.

Good Observer #1: “I can’t imagine what you are going through. But I’m here for you if you need someone to share your thoughts with or just someone to be with you.”

Good Observer # 2: “You are really suffering. Life in this broken world has been so unfair to you. May I cry with you?”

Mike

 

 

 

 

 

 

RAMBLINGS: A Stoic and Hedonist Walked into a Bar, and it was the Bar of Suffering– Part II

I know that my previous post on this was very long. This place is where I think “out loud” and can ramble at times, thus the name. I do think I have now set the groundwork for this thought and can bring it to a conclusion, at least the conclusion that I think captures it best. First, I will go back and restate the positions of the Stoic and Hedonist.

two people in a bar

The Stoic

The stoic sees suffering as just a normal part of life on this earth. They realize that we can’t control or eliminate most suffering so, to live successfully, the best we can do is to mitigate it emotionally. The stoic would knowledge the major-league suffering (such as cancer, family member accidentally killed, etc.) but not digress into the details of the suffering in each conversation. As I mentioned, the Hedonist would often cope by not acknowledging the suffering at all, such as hiding the fact that a patient has cancer.

In a social setting, it would be awkward for the stoic to do more than mention their state of suffering, once. Within their own voice and the voices of their stoic friends and family, they would hear the restraining narratives, “It could have been worse,” or “Look at the bright side.” The purpose of these narratives is to act as guardrails, preventing them from doing the very un-stoic exercise of self-pity. The belief is that since the suffering event can’t be controlled, you can prevent it from having an influence into your personal fulfillment by a hardened resistance. Looking at the bright side, would say that the suffering will do something good for them, like making them stronger. They to not retreat to pleasure as a method to mitigate the effects of suffering.

The Christian Stoic

To add to the above, the Christian stoic would find a theological position that God is control of the universe and suffering is part of that world. Therefore, we are to accept what comes our way with grace and to learn and grow from it. To fight suffering, emotionally, would be to fight God.

The Hedonist

The hedonist believes that we are fulfilled when we avoid suffering and enjoy pleasure. Therefore, they may deny the presence of suffering, when possible. The clearest example is where a family refuses to use the “c” word (cancer) or “d” word, (death or dying). By not talking about it, makes it feel like it doesn’t exist. At least the stoic would acknowledge the suffering, although they would stop there.

Once the suffering intrudes into the hedonist’s life, beyond the possibility of denial, then they try to mitigate it by off-setting it with pleasure. They would never say, “Oh, it could have been worse.” They would never say, “Just look at the bright side.” They would realize that there is no bright side. The best remedy is reducing the direct effects of the suffering. This, as a simple example, is why the hedonist will resort to narcotics very early, when their suffering is physical pain. The stoic takes plain Tylenol and “sucks it up.”

The hedonist is more comfortable when the sufferer expresses grief and sadness, because the coping mechanism, unlike with the stoic, is not based on just being tough. In the south at least, you will hear the term, “poor thing,” often, when referring to someone who is suffering. It is also more common for those suffering to dominate every conversation with the details about their suffering.

The other thing the hedonist would never do is allow a conversation that blames the sufferer for their suffering, even if they are partially to blame. If a heavy smoker is dying from end-stage COPD (emphysema), they would never tolerate the suffer saying something like, “I wished I had never smoked.” The same is true with cirrhosis and alcohol abuse. The emphasis is making the suffer feel better physically and emotionally by whatever means it takes.

Christianity and Stoicism

The Christian Hedonist

It is hard to nail down one perspective for the hedonist. I suspect that they would see suffering as either an attack from Satan or God punishing them for their sin. After all, God punishing them for wrong-doing is the back side of the prosperity gospel, where it is believed that God rewards you with a good life and treasures if you obey him.

John Piper Hedonism

The Atheist Stoic or Hedonist

There are many topics I wish I could cover here, such as the perspective from all religious views, as well as the atheist. However, I would end up with a posting even longer than my previous one. I will touch on the atheist, but only briefly.

The honest atheist must be a nihilist. But only some atheists are honest about their view just as only some Christians are honest Christians. I don’t mean “true Christians” but Christians who approach their belief system from an honest mind. But the honest atheist can’t inject meaning into to existence where there can be none.

While not injecting meaning, some atheists can take the approach, when dealing with suffering, that Dr. Lewis Thomas took in his book, The Medusa and the Snail: More Notes of a Biology Watcher. He sees biological suffering, such as cancer or birth defects, as simply evolution experimenting until it finds the best course. He states that we would not be here if it were not for genetic errors. The Medusa and the Snail More Notes of a Biology Watcher

In my case, out of my 30,000 genes, which hold the blueprint for making proteins, only one (that’s why it is called “monoclonal”) folded the wrong way, creating this total nightmare for me and my family. But in Dr. Thomas’ perspective, if Multiple Myeloma (the resulting cancer from this mutation) caused me to live longer or better, then this gene would have a great advantage. However, on the flip side, it can cause tremendous suffering and eventually it will be eliminated through the evolutionary process, but that can take thousands of years.

The Christian evolutionist, and they do exist, sees evolution as God’s process of perfecting the human race (and the world in general). They would share Dr. Thomas’ perspective.

So, What is the Proper Approach to Suffering?

I will pause at this point, to avoid another long post. I also want to give this more thought and study. So I will not reach a conclusion here as I had wanted.

CS Lews SUffering

I think the Christian often makes the mistake of pulling verses from the Bible here and there to support the position that they already have. But I do think the Bible has given us the gift of the book of Job, which appears to exhaustively address the topic of suffering and the proper response, if we just “listen” to it carefully. While I’ve read it many times, I want to re-read it today, between appointments, to gather my thoughts.

 

UPDATE:5/8/19 – Day 8 with 92 to go.

This is day 8 of a 100 day of my autologous stem-cell transplant. We have completed several batches of blood tests to make sure I’m healthy enough to endure this procedure and to get good markers for the boundaries of my cancer. I have just a few more tests left, echo-cardiogram, bone scan, and full body MRI. But so far the procedure is a go. Unless something comes up, I will become an inpatient at UW on May 17th as they start to stimulate my own stem cells. Once my stem cells are harvested, a couple of days later, my bone marrow will be burned out and then my stem cells re-infused. We will now be living in Seattle for the summer except for brief visits to Anacortes.

The good news and bad news:

  •  We did an accurate measurement of my cancer cells (Lambda light chains). I was concerned because the last test showed the cancer cells starting to surge (129), and that was while I was still on chemo. But I’ve been off chemo for 3 weeks and was fearful that it was worse. However, to our surprise, the numbers have come down quite a lot, to 25, which is near normal. That is good news. See the graph below:

Lambda Light Chain Graph

  • We did a careful measurement of my renal function. While I produce above normal urine, and my kidneys keep my electrolytes in the normal range, my “creatinine clearance” from a 24-hour urine observation is only 24, which is about 40% of what it needs to be to get off dialysis. This is bad news and very discouraging. I did start dialysis in downtown Seattle, but somehow the “bath” was not correct for me and my neurological symptoms have been much worse. These are my major symptoms, constant twitching, cramping, and jerking.

RAMBLINGS: A Stoic and Hedonist Walked into a Bar, and it was the Bar of Suffering

Part I – Stoic and Hedonistic Cultural Approaches to Suffering

A number of years ago I ran into and old friend at a grocery store. He has been an associate pastor of a big—let me say—culturally Scandinavian church. I knew him well during his tenure as pastor, and I knew it had been a rough time for him. The senior pastor had a serious mental health problem, and I don’t mean depression or anxiety. It was a personality disorder, where he manipulated and abused many people around him, including my friend. I knew it and, fortunately, the elders of the church had figured that out.

My friend, and I will call him “Tom,” described to me that since he had left that church, he had come close to leaving Christianity entirely, and had become a “Hedonist.”

I know what a Hedonist is, in its purest, form, in the same way I know most schools of philosophy of the western cultures. While I did not major in philosophy in college, beyond basic courses, I did go back and spend a decade in serious study of western philosophy. It is my favorite hobby, wishing I had majored in it, if only I could have found a way to have made a living and supported a family from such an unmarketable major.

But I wasn’t sure that Tom meant that he was adopting the purest forms of Hedonism or just a modern stereotype of the idea. Classical Hedonism had its roots in the teachings of Babylonian philosopher, Siduri, who said, “Fill your belly. Day and night make merry. Let days be full of joy. Dance and make music day and night […] These things alone are the concern of men.” This basic concept was later adopted by a school of Greek philosophy, which came out of the settlement of Cyrene, which is now located in what is now Libya. The major tenants of the Cyrenaic school of philosophy was that there is no God or gods and that the only thing that matters, to bring human happiness, is seeking pleasure. Pleasure, to them, was more than the absence of suffering.

Tom went on to explain that what he really meant was that he had spent his whole life denying himself pleasure for the sake of his Christianity and it had gotten him nowhere, only a horrible role under a spiritually abusive pastor. Going forward, he was going to seek pleasure in anyway he could find it. It could mean simply reading great books, any great books, or going to concerts of any type of music he wanted, or—and he wasn’t sure at that juncture—drinking a lot of beer, maybe looking for a lot of sex, or drugs. Whatever he wanted was now available to him. Within that context, he was hoping for finally finding some joy, real joy, since he hadn’t found it within his Christianity.

There are many philosophical tensions within theology and philosophy. If Hedonism sits on one end of such a line of tension, on the other or opposite end would be Stoicism.

Stoicism has some of its classical roots in the Greek philosopher Zeno, who himself, was a study of Socrates (whom I’m sure you have heard of). The Stoics believed (and is reflected in the modern connotation that someone is “stoic”) that logic or reason leads to happiness but that path to happiness can be easily side-tracked by our response to desires, such as partaking of vices in general. This basic idea of Stoicism was expanded over time to not just meaning that we must not give in to our desires, but to stand up to suffering and not allow it to influence us. Some took this view of suffering to the extreme, to the idea that we must seek out suffering, in order to find fulfillment.

As Europe progressed, historically and philosophically, there was a line of philosophical tension that developed across geographical landscapes. South of the Alps, Neo-Platonism (a new form of Platonic philosophy) developed, which became the backbone of the Renaissance. Within this school of thought, human experiences were paramount to successful living. I will not digress why and how this happened, although European philosophy is one of my favorite topics.

Stoic

North of the Alps, the Greek philosopher, Aristotle, had the greatest influence. This unique form of his philosophy emphasized logic as the way to live our lives and the relegating of human emotions, to borrow from the stoics, to a distraction at best.

So, in summary, below the Alps, you were to avoid suffering and seek pleasure to find the best life. North of the Alps, you were to ignore the influence of suffering and avoid pleasure. Sometimes, those in northern cultures, suffering was even a means of personal enhancement. From this idea we get the modern mantra of “No pain, no gain.”

I’ve visited a good friend who is a Spaniard, in Spain, a few times. He said to me once, not fully understanding these deep philosophical rivers that run through Europe, the following Spanish cliché; To the Germans, all things are forbidden. To the French, some things are forbidden, and some things are sought. To the Italians, all things are sought, especially those things which are forbidden.” But that the complex philosophical landscape of Europe it in a nutshell.

On A More Personal Note

All subcultures have had great influences of much larger, philosophical movements. These influences are often convoluted and mixed to the point it is hard to recognize their roots. My Christian friends often reject this notion, thinking that their views are purely “Biblical.” But when you have had the experience of spending personal time with Christians from all parts of the earth, you can quickly see how each subculture of Christianity has been shaped by broader, secular philosophical movements.

America is made up of many different subculture enclaves. These subgroups are often broken fragments, representing their European (and sometimes non-European) roots. This has been obvious to me, as a person from the Bible-belt south, who married someone from the northern plains (Minnesota). While you can find an assortment of subcultures within Tennessee and Minnesota, even from family to family, there are dominate subcultures for each and I can describe these without resorting to stereotypes.

Hedonism

The southern American subculture, as any subculture, has had a variety of influences. Some of the most powerful are the European roots of English, Scottish, French, Spanish, German, and some Italians. It has also, of course, had the influence of the African cultures of the former slave. The Northern plain of the US is much more monolithic than the Southern states with a high concentration of settlers from the Scandinavian cultures.

While the German and Scottish share much of the Aristotelian emphasis on reason as do the Scandinavian countries, as Aristotelian philosophy evolved and moved northward across Europe, its most stoic forms settled in the Scandinavian countries. This refinement of Aristotelian reason with a stoic flavor, versus the emotionalism of the Platonic Humanism in the southern countries of Europe, was probably a factor of the harsher climate.

I want to talk about this microcosm in which I was thrust, growing up in the south but marring into and living for a while in the upper Midwest, as an example of these much broader philosophical considerations. This story does become more practical. However, before I start to talk about the culture of my wife, in-laws, and friends from the upper Midwest, I must be clear that I’m not speaking negatively. All cultures have their own vices and gifts to the greater world. As I navigate this very personal story, I will really try to share my own subculture in a more disparaging light than my wife’s as not to offend anyone.

Souther Hospitality

The south is known for its “Southern Hospitality.” This is a true and positive trait. There it is normal, and expected, to talk to strangers such as in line at the grocery store. But beyond just greeting these strangers, it isn’t that unusual to engage in very personal conversations, and I’m talking about sharing very personal information and asking very personal questions. The stranger is treated almost the same as an old, close friend. I can’t imagine this ever happening in the upper Midwest. There, people are far more private. Although there are exceptions, people in the upper Midwest rarely share personal information even with close family members and never, ever with a stranger in a grocery store line. You would certainly never share unfavorable things, like struggles or problems. Maybe that’s a good thing. But this lack of candor is closely tied to the Stoic mentality, where suffering must be accepted without complaint and the best face must always be put forward. I know that my “over sharing” often makes Denise fell uncomfortable. I can’t imagine her ever “blogging” because writing down person thoughts for the world to see is not in her wheelhouse.

Having married into the northern plains culture, after 36 years, I am still considered a stranger in the family. The proof of this is, if I were to go and visit my in-laws by myself, I believe it would seem odd to them and they would be asking (to themselves) what did I want? On the other hand, Denise was welcomed into our family as a family member (same as me) from the first time my parents knew we were serious about marriage. If my parents were still alive, it would not be odd to them at all if Dense were to come and visit them without me. As a matter of fact, they would have a big dinner to welcome her and make her the center of attention. They made her the center of attention even when we visited them together. She was their Joan of Arc of Diana (Princess of Wales) figure. But this is typical Southern hospitality where the strange is considered the most important person. But I also blame myself for being a stranger to Denise’s side of the family. I’ve tried to crack the code of family membership, but somehow have come up short after all these years.

So, while I would prefer, as a stranger, to have my car break down along the road in the south (knowing that a complete stranger would soon help me out), if I had a hard task in front of me, such as fighting cancer, the northern culture would be most supportive for, sucking it up and pushing ahead despite adversity.

The Message of the Fish

The major Norwegian dish for Christmas, and I’m speaking of Norwegians in the upper Midwest as I do not know what they do in Norway, is lutefisk. Lutefisk is a cod that has been salt-dried—only God knows for how long ago—to the point of being like hard bricks of fish. You could hammer a nail with one. Then, when it is time to eat it, even years later (speaking of the original use in Norway), it is placed in a barrel of lye (same as Drainio®) water to dissolve the bricks into a gelatin-like mass of gooey fish. While retaining some flavor of the sea, it tastes more like cardboard. At least the upper Midwest Norwegians put butter on it to add some flavor.

While lutefisk was an essential source of protein for generations of Norwegians, out of subsistence, later it became a food of stoicism, proving that suffering is part of life. Personally, I have grown fond of lutefisk at Christmas, but in the same way I like almost getting shot in the eye with a BB gun, like Ralphie, to bring back the Christmas spirit.

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I see many Hedonistic cultural values in my native South. While Las Vegas may be the most Hedonistic city, there are states that are more so than Nevada. Beyond their positive traits of hospitality, being indulgent in your wants is also expected. The top eight American states for smoking are southern states, with Michigan coming in at 9th. The top 8 states for adult obesity are all southern states, with one exception, Iowa. While the south has the lowest cost of living in the U.S., of the top 5 states where credit card debt is the highest, are all deep-south states except number one, which is oddly New Mexico. Credit card debt is the easiest measurement of living beyond your means.

Lastly, and more disturbing, of the states with the largest amount of time spent on Internet porn sites, out of the top ten, eight are deep-south states, which ironically corresponds to the Bible belt. You would think they would know better. The number one search word on these porn sites in the south is “lesbian” while, oddly, the number one search term in Minnesota is “step sister.” As I try and figure that one out, Freud would have been helpful. I suspect it could be bizarre twist on this tendency of not feeling comfortable interacting with strangers, so they even keep their sexual fantasies within the family. Not to be too critical, I will say that I wouldn’t have been surprised if the number one search term for Tennessee was “sister,” but it was “lesbian” like the rest of the south.

Out of the top 13 states for opioid prescriptions, 10 of those are southern states. However, oddly, the greatest alcohol is consumed in the upper Midwest states of Minnesota, Wisconsin, North and South Dakota, and Montana. I will have to give that exception some more thought as well. But is possible that alcohol is the one addiction that you can keep private the easiest.

While it seems, on the surface, the south is more deeply Christian, even that brand of Christianity also has Hedonistic overtones. I know this because I was in it for two decades. It is where the prosperity gospel started and bloomed. It is where the concept of God is more like a genie in your pocket that grants your ever wish, such as money, ease of life, and good stuff. It is a brand of Christianity that believes if you do what God wants you to do—or at least appear to do it—then you will be blessed. It is all about what God can do for me and not about sacrifice. That’s why this deeply religious region is also the biggest consumer of these bad vices mentioned above, because they tend to shape their Christianity around their desires as well.

However, in contrast to lutefisk, a favorite Christmas dish in the south could be one of many things because it is so heterogeneous there is not one dish that stands out. It might be from a receipt from “Southern Living” that has a stick of butter (that is the ONLY connection to lutefisk), two cups of sugar, two cans of Mountain Dew, and marshmallows . . . and lots of meat as it is a main course rather than a desert. But those receipts try to indulge all gastronomic desires in one spot. I will avoid digressing more, but it is also why the restaurant chain “Golden Corral” is a southern phenomenon with its formless buckets of foods built around grease, sugar and butter and the concept of gluttony in an “all you can eat” menu.

So how does all this fit into this idea of the Stoic and Hedonist walking into a suffering situation?  After I just set up this background, not showing the south in a positive light, I will now tell another personal story and to some it may not show the upper Midwest in a positive light. But I mean for it to be neutral and just food for thought. I already know that someone reading this will be offended and I regret that. There is no perfect family and no perfect society.

The Broken Heel

I remember when I was 13 and went in for a layup while playing basketball at my school’s playground and my right heel fractured, right down the middle. It was a terrible pain. My mom took me to my pediatrician (he was a “northern” or as my mom said, a “Yankee”), who quickly diagnosed me–without X ray—as faking the pain to get out of school. He said, “No one breaks their foot just doing a layup,” as he rolled his eyes. He advised my mom to force me to walk on it and to go to school. I did and it was horrible. I didn’t want my classmates see me cry so I would go to my bedroom and hide as soon as I could and cried in pain.

One Sunday night, while my folks were watching Bonanza, my dad came back to the bedroom to check on me. Besides taking Tylenol around the clock, I had found that if I cut off the blood flow to my foot, it would not hurt so bad. Dad walked in and found me with a tourniquet around my ankle and my foot was snow-white. He was very alarmed and asked me, “What are you doing?”

After I explained that I was trying to reduce the pain, he became angry. Not at me, but at the pain. “I’m taking you to the Emergency Room right now!”

At the ER, they did take a X ray and seeing the fracture, scheduled me to see the orthopedist at his office in a couple of days for a cast. My mom drove me.

On the way home from the orthopedist’s, and it is a scene that I will never forget, I remember my mom sobbing and she did the strangest thing. She pinched her own leg so hard that she left a big, black bruise. That is how upset she was that I was suffering and that they had followed the pediatrician’s advice by forcing me to walk on it.

For the subsequent days, my mom cried several times and said things like, “Poor baby, I’m so sorry” about a thousand times. I am sure she gave me all the candy and deserts that I wanted and encouraged me to engage in self-pity. This is how a Hedonistic society would approach suffering, by denying it and then smothering it in things of pleasure, as if trying to put out a fire with water. I miss my mom when I’m suffering.

However, in my southern culture, you didn’t say words like “cancer,” or “dying,” as if not saying it, makes it go away. I will write more about that later.

From what I know about the culture of the upper Midwest, if I had come home from breaking my foot and if I voiced my pain, I would be told, “Well, at least you didn’t break both feet. Most people break both feet and you don’t hear them complaining.” Maybe I’m exaggerating just a bit, but suffering is always confronted by the notion that, it could be worse. Another twist on that is that there people in worse shape than you, implying that you should not be complaining.

suck it up

This difference became very clear to me soon after Denise and I were married. I was sick for the first time with a case of “Man flu. I was up in the middle of the night, on my knees, vomiting in our toilet. Before long Denise came into the bathroom and looked down at me with her sleepy eyes. I was expecting her to get down on her knees beside me and wipe off my face with a wash cloth, just like my mother use to do, and to say things like “poor baby.” But standing in the doorway of the bathroom she said, “Can you go vomit somewhere else, you’re keeping me awake.” There was none of that poor baby talk. That was a classic example of how our two cultures approached suffering differently, neither with a healthy view of suffering in my opinion.

I want to elevate the suffering to a higher level as I talk about the stoic and the hedonist. So, let’s talk about cancer, a topic too familiar to me right now. How do each of those cultures handle such an issue?

 

Believe it or not, when I worked in a hospital in Tennessee, in the 1970s, it was common practice to lie to the victim of cancer. The family would hear the terrible news and then orchestrate a situation where no one would tell the patient, but to pretend that all was well and that they were getting better. There wasn’t a lot you could do about cancer in those days. But the belief was that cancer was so evil and horrible, that it was unspeakable. It was also taboo to mention death in any form such as “you are dying.” But the sufferer would soon figure it out. I can’t imagine this ever happening in the northern plains, even in the 1970s.

A classic example of this was when my own father was diagnosed with lung cancer. I was living in norther Michigan at the time and had to assess things by phone. But someone, either my sister or my mom, told me, “Don’t you dare mention the ‘cancer’ word to dad.”

I immediately called dad’s hospital room and spoke to him. I asked, “Dad, do you know what’s going on?”

Dad said to me, “Yeah, I think I overheard that I have cancer.”

I answered, “Yes you do Dad. How do you feel about that?”

Dad answered, “Well, I know that I’m dying.”

I asked, holding back the tears, “Dad, how do you feel about dying?”

He answered, “I should have died on Omaha Beach (Normandy invasion of D Day) so every day since then has been a gift. I don’t fear dying now.”

poor baby

In the stoic societies, it is far more objective. Of course, they would tell the patient that they have cancer and talk about the course of the illness. The difference is that in the southern, hedonistic, culture, denial was a tool to deal with the pain of suffering. In the stoic tradition, you are at least honest, but complaining is still frowned upon. It is as if suffering is God’s grand plan and to complain about it, is to question God. To them, suffering must be accepted with open arms.

Now that I’ve done an excellent job in offending everyone in the northern plains, and those in the deep south, I am done with this cultural background story. I want to go ahead in Part II and consider what is the healthiest way to deal with suffering. There are things you can borrow from both the Stoic and the Hedonist. I will look at this from the “Biblical” (a word that I despise because it is usually a cover for promoting one’s own agenda) and consider approaches from those without a Christian orientation as well.

Mike

 

 

 

 

 

 

 

 

MINI-RAMBLINGS: Hope

I am a data-driven person, as is my doctor. I’m glad she is because statistics don’t lie . . .  ever. With that said, I have a growing conviction that hope makes a difference in outcome. You may say, “Duh.” But scientifically, it is not so clear, mostly because there hasn’t been a lot of good research on the topic. Here is one article about it, but it only deals with the influence of hope and optimism on one’s psychological outcome, not so much the physical outcome.

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I think the body has an intuition if it is living or dying. But I think we have a conscious influence on that intuition by the way that we live. One, such as myself, who has a potential of dying relatively soon, could focus on that, give up, and mope. I think of moping is sitting on the couch and just staring out the window. Feeling sorry for one’s self–as I have at times–is not helpful.

But someone with hope, who knows the odds, but still sees the path out, can fair better. If they live as there will be a tomorrow, exercising, getting out-of-doors, and planning future trips and projects, I think they have a better chance.

After spending years as a provider, and now a patient, I am appalled about the lack of hope woven into our health care system. Many times I’ve had providers tell me how serious my condition is, but not mention that there is pathway out. Why do they keep telling me this? I want to give that more thought but I think, yet I’m not sure, it is because they do not want the patient to be disappointed if they do not do well, and blame them. I was happy to hear my new Multiple Myeloma doctor say that she has seen about 20% of patients cured by stem-cell transplant. The word “cure” is taboo in Multiple Myeloma circles, because officially there is no cure.

On a side note, tomorrow I start collecting my urine for a 24-hour creatinine clearance test for the nephrologist at the University of Washington. I have not done one of these tests since January. It is a more reliable test for determining renal function. I know that my kidneys have had the hell beat out of them, but there is a slight chance, that if this test surprised us all, I could get off dialysis. I hate dialysis. I hate it because it makes me feel terrible for that day. I hate it because it will make a stem cell transplant more dangerous and complicated. I hate it because I have to have this catheter in my chest, which is always uncomfortable. It makes it hard to fly-fish. It makes it hard to work on my car. It makes it hard to chop down trees. But most of all, I hate being in the dialysis-center system. I have not had a good experience with the company I am working with. The technicians who hook me up are very nice. But the system is wanting. They have no clue what my diagnosis is. They argue with me about my orders. Now, they are fighting with me about going to Seattle for my treatment, stating that they may never let me come back. This is crazy! There are days that I think the administration of that system wants me to die so that I would free up another chair.  So, I want to get out of that circus as fast as I can, one way or the other.

But, back to the topic of hope. Again, I have yet to find any studies to support the idea that hope can make a difference. However, until the studies are done, I will live like this is reality, as I think it is true.

UPDATE: DAY 3 OF STEM CELL TRANSPLANT PROGRAM, 97 MORE TO GO.

I will not do a play by play account of what is going on. As soon as I have more information, I will do a detailed posting here as this is where my family, including my kids, get their information.

I will just say that things are going well. Denise and I are mentally exhausted from three days of this (actually two days as today is a rest day). One of the country’s top thought leaders in Multiple Myeloma is my doctor. I am going through a long process of testing before the actual stem cell transplant process begins, in about 7-10 days. Next week I will many tests, too many to mention here. So, I’m still relatively healthy and feeling pretty good. The fact that I’ve been off chemo for two weeks makes me feel better physically than I have since I’ve been sick. However, my cancer is starting to rebound quickly. So, we must do a transplant soon. If the testing says that I’m not eligible, then I need to get back on chemo ASAP.

In summary, a stem cell transplant is still my greatest hope of surviving more than 3 years. My doctor uses the term “cure” for about 20% of the stem cell transplant patients because after 15 years, they have no evidence of the disease and are on no treatment. But the official statement is the Multiple Myeloma is incurable. Cure is a dream. However, a stem cell transplant comes at a great cost, and I don’t just mean just financially. It will be a brutal process. For the typical patient, the mortality rate is about 2%. However, because I have renal failure, the course will be more difficult and the mortality rate for me is more like 5%. I, also, will have to stay in the hospital at the University of Washington for a total of about 4 weeks, whereas the typical patient would stay in for just a few critical days.  Come on kidneys, damn you, get to work!

So, look for a detailed update later next week.

Mike

 

Mik