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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

Ramblings: Happy Birthday Denise!

Today is a big birthday for Denise. I am at a loss for words in trying to find a way to celebrate this on paper. During our 37 years of marriage, this year would have to be the most challenging one for her. She had to face (and must continue to consider) the possibility of  being widowed. She has been at my side during my 2-week hospitalization at Peace Health and was at my side, almost every day, during my 2-week + hospitalization at the University of Washington. She suspended her career and came and lived with me in Seattle for over two months during my out-patient treatments.

Neither of us have ever fully understood the depth of love and commitment as we have this year. I would have to say, I would not be here now if it were not for her. Even if her care wasn’t what kept me alive, her presence in my life is what kept me from wanting to take my own life when my days were so miserable.

I carry guilt for what my disease has done to her. I would never have wanted our marriage to go though something like this as I’ve always wanted to be a “blessing” to her, rather than a curse. But it is what it is and there is nothing we can do about that.

I pray that this year of her life will end up, somehow, being her best.

RAMBLINGS: Time

Time the thing so precious to us,

Why does it pass with such a great rush?

Why isn’t time slow, as we would please?

It is far too fast to satisfy me.

 

But it is like traveling in mountains from peak to peak,

To no certain place you are out to seek.

You look back at the peak from which you came,

The distance so short, it’s not the same.

But you forgot the valley below,

You see, time is really slow.

 

This is a corny poem I wrote for English class when I was a junior in high school. I can remember why I wrote it. Just a week before, I went outside our high school to enjoy a bright May sun during lunch. I bumped into one of my best friends, to my surprise, wearing his graduation cap and gown. He, and his senior class, were practicing for the upcoming graduation march and ceremony. At that moment, I realized that Terry—in the class ahead of me—was graduating and leaving the school the following week. All those years of hanging out together were over. Indeed, I never saw him again after graduation day. (I never saw any of my friends from my own class, except one, after my own graduation day a year later.) This moment put me in a melancholy mood with regards to the passing of time and that mood lasted for at least a year.

When you are a small child, time passes so slow that it seems like a century from one Christmas to the next. It seemed like decades from the end of school each year, at the end of May, and our family vacation to the outer banks of North Carolina, which occurred in August. However, as we all know, the older you get, the faster time seems to pass. Here  is a great article that explores this perception, scientifically.

The primary event that brought this passing of time to the forefront of my mind this week was losing my nephew David Baker. A few days ago, they had the celebration of his life and memorial of his passing. Part of that was a montage of photos, at least 50, that covered the whole span of his life. With the state of my illness, I could be there (in Orlando, FL and Rossville, GA) as I cannot travel, but I did see the photos.

Many of them were of David when he was a little boy. It rushed memories back into my head of the times we drove down from NE Tennessee, to Rossville, GA to visit them. I also lived with my sister and her two boys for six weeks just prior to my graduation from PA school as I was doing my OB/GYN rotation nearby them. I loved playing with David and his older brother Eric. I loved them. It seems surreal that he has left this earth and I can never talk to him again. It deeply saddens the heart. I’m glad I spoke to him a couple of days before his passing.

Time is the great robber of life and the great giver. That’s what makes it so hard. We don’t even know what time is. We thought it was just an abstract human concept until Einstein came up with the ideas that time can be influenced by its proximity to mass and speed. Both theories have been proven through experimental physics. Time is a substance.

There are so many times in my life that I’ve bookmarked, which I would return to in a second if only I could. One of those was when my kids were all little and we were living in Marquette, MI and I could sit them on my lab, all at once. I could give them a perfect father’s protection. Another time that I envy was when I was in college. But if I were to go back that bookmark, I wouldn’t know my kids or Denise, but my parents would still be on this earth and my body would still be full of health, life, and energy.

If I were to just go back a few years, I wouldn’t have my grandsons and that would be a huge loss. So, it is a huge irreconcilable quandary. Maybe I would pick a bookmark just one year ago. I would have my grandsons, but I would still be in good health. I used to have a recurring dream of flying. Now, it’s running. I will probably never be able to run again. I was running seven miles a year ago. If we went back a year, we would also have David, and possible we could have saved him, but we still wouldn’t have my mother. To have my mother, especially of being of a sound mind, we would have to go back 5-6 years, but then I would have lost two of my grandsons.

The answers are never easy. Damn the passing of time… and thank God for it as well. I dream of living in a dimension where there is no time, but the present reigns eternal, including all of its joys. I also have a fantasy where for all eternity we can time travel and go back and fix things in history. Not just fix the errors within my own life, but to fix all of history. To kidnap Hitler as a little boy and to rehab him, before hate fills his heart. Now that would be a dream and a mission from God.

 

 

 

RAMBLINGS: Another Evangelical Bites the Dust, An Epilogue for Part III

I was afraid that this would happen, and it has. My use of the term Evangelical or American Evangelism has been misunderstood per private e-mails. I take the blame for that, because I did not define how I was using the term.

It is true that Evangelism, as a common term, had its birth in America around the time of World War II. You can trace some of the roots further back. In the beginning, it was a term coined to define a group of people based on their theology. The National Association of Evangelicals define these theological boundaries this way;

  1. Conversionism: the belief that lives need to be transformed through a “born-again” experience and a life long process of following Jesus
  2. Activism: the expression and demonstration of the gospel in missionary and social reform efforts
  3. Biblicism: a high regard for and obedience to the Bible as the ultimate authority
  4. Crucicentrism: a stress on the sacrifice of Jesus Christ on the cross as making possible the redemption of humanity

I am not talking at all about American Evangelicalism based on any theological definition, but about the subculture that has risen around it. Those who have reached the conclusion that I’m going to spend eternity in hell because I’m no longer an evangelical, are making huge inferences.

As I describe this American Evangelical culture, I am basing it on my experience within it. If you can’t relate, I am certainly not accusing anyone of these values, and this does not apply to you. But I know what I personally experienced, and I sense that it is true for large swaths of Evangelicals today, based on what I hear them say and what I read.

Here are some of the characteristics of this group:

  • Anti-intellectualism, which I’ve been talking about in the past two posts. For further reading, I suggest Mark Noll’s book, The Scandal of the Evangelical Mind.
  • Christianity that has a deep bond with political conservatism, especially the Republican Party. I suggest that the philosophy of the Republican Party now supersedes any values that they would get from the Bible. At one-point (during the days of Jimmy Carter) Evangelicals had an unhealthy bond with the Democratic Party. Both parties will manipulate the evangelicals for their votes.
  • As a subculture they rank sin as horrible or inconsequential. The Evangelicals I’m talking about list homosexuality and abortion as the horrible sins (even though Jesus himself never mentioned these in his sermons). However, they list adultery, greed, lying, deceit, stealing, ignoring the poor, and religious pretentiousness, all as inconsequential sins, especially if done by an evangelical or evangelical leader. Oddly, Jesus did preach against all of these things.
  • They have blended Christianity with American Nationalism, and some, even with White Nationalism. I’ve heard several evangelical preachers say things from the pulpit, such as “America is God’s chosen people.” Jesus also warned against mixing Christian things with secular political things.
  • What I call, Unorthodoxaphobia, which is the fear of being exposed to some kind of thinking, which they define as “unbiblical.” Therefore, they do not entertain any curiosity outside the very specific dogma of their church, a lot of it having nothing to do with the Bible.
  • That we are living in the “Last Days.” This idea was not part of the main church for its first 1800 years of existence. Yes, there were a few pockets of people throughout history that thought that Jesus was coming back any day. But the great theologians of the Church for all those years considered the early days of the church as the times of great persecution and now there was going to be a very long period of peace. Evangelicals ignore all those years of Church history and insist on this idea of Jesus coming back soon, and this planet is going to burn, is “Biblical.” It was mostly promoted by the likes of Hal Lindsay in the 1970s, and in the 1800s, C. I. Scofield.
  • Israel is still God’s chosen people and them becoming a nation was the plan for the “end times.” This too was never part of the Church’s position, up until John Nelson Darby and C. I. Scofield (in the 1800s) came up with it. If anything, prior to this, the Church was guilty at times of being anti-Sematic. So now, the idea of praising Israel and looking the other way when they do horrible things to the Palestinians, is part of American evangelicalism. I’ve had Palestinian Christians ask me, “Why do the American Christians hate us so much? We are confused.” When I explain to them this history, they are in disbelief that one man (mostly C. I. Scofield) can have such powerful influence of the Church.

So, this is the evangelicalism, which I left. I’ve been warned never to write things that will challenge people’s religious beliefs, because it will piss them off. That is not my purpose. My purpose is to state the fact that the church in American is dying. That kids are leaving evangelicalism in droves and will never consider God’s existence again, because of their experiences within it. I’m just trying to define the problem and address those who are about to leave so that they will know that there are alternatives to this evangelical sub-culture, in which they have been raised, besides atheism.  Mike

 

 

UPDATE: 8/20/19- I stand Corrected

After having my transfusions last night, I had high hopes it would help with the disabling symptoms. When I awoke this morning, I was feeling worse and therefore quite discouraged. As the day when on, I started to notice a big improvement in my stamina over the previous two weeks. This afternoon, I went with a friend (who is leaving to go back to Texas tomorrow) and we drove up to the Baker River trail, in the mountains. I was able to complete a 3 mile hike without becoming severely short of breath and a high heart rate. Yesterday, walking across our yard left me extremely winded. Transfusions are not the long-term answer as we must figure out why I’m suddenly so anemic.

The other correction, which I need to make, is that Denise’s birthday is next Wednesday, not tomorrow. I’m totally lost on time these days and “chemo-brain” doesn’t help. Mike

 

UPDATE: 8/20/19

In the hospital for two units of blood last night. The lab values certainly showed I needed it. To my disappointment, so far, there has been no improvement in symptoms, which adds another layer of perplexity. I’ve suspended hope for now. Denise says she has enough hope for both of us, which is a good thing. I think it is always easier for an outsider (meaning those who are not feeling the symptoms) to maintain their hope. Tomorrow is a big birthday for her and my hope is that I can focus on her, completely, for one day. My bad year has taken a toil on her.

UPDATE: 8/19/19

I wish I had good news. However, my anemia is continuing to worsen rapidly (my hematocrit is now 23, so I have about 1/2 have the blood that I had one year ago) and we don’t know why. I can’t imagine how someone could feel worse and still be alive. My plans for physical rehab and exercising is out the window as it takes all my strength to go from one room to another.  I’m in great need for a transfusion as soon as I can get a hold of my hematologist. But that will only give temporary relief of my symptoms. We never saw this coming, especially with no clear answers. I remain quite discouraged and just shy of feeling hopeless in this marathonic journey.

Sadness

My nephew David passed away today. He was a man of great artistic talent, which he got from his mother, my sister. He was a really nice guy from all angles and a loving husband. We mourn. I ask for prayers of comfort for my sister Sandra, his brother Eric, and David’s wife Rizza.  Mike

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My favorite photo of David, taken years ago

 

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UPDATE 8/15/19 and some Self-Pity Ramblings

UPDATE: Always Something

I had my stem-cell transplant in mid-June. Around July 4th (I know I’ve said this part before) I came down with graft Vs host syndrome with serious abdominal pain, head to toe rash, and profuse diarrhea. Was started on five new daily medications, the cornerstone being a high dose of steroids (after six weeks of therapy, I’m off those medications now and my graft Vs host has not come back, a good thing). However, being on the steroids caused a dormant virus (CMV) start to propagate. A full-blown CMV infection, in someone like me, has a very high mortality rate. I was then started on a new anti-viral medication to treat the CMV. Virtually all the medications that can treat CMV, can harm the kidneys. I was started on the one medication that harms kidneys the least. However, it has one rare side effect of hemolytic anemia. Unfortunately, it has caused this side effect with me. My hemoglobin started to plummet as soon as I started it (dropping by one full point per week). Now I am very anemic and extremely weak. When I first came home from the hospital, I was walking 5 miles a day. Now, I can’t walk from my bedroom to the kitchen without being very short of breath and a heart rate of  120-140. I did walk two miles yesterday with Jerry, but it was like climbing Mount Everest. Tuesday morning, I could not stand without almost passing out. This is very discouraging, and I feel I’m losing ground daily.

The other bad thing, and we think it is related to the anemia, is that I woke up with a severe headache 12 days ago, and it has never gone away. It keeps me awake every night and there is nothing I can take for it. I’m not supposed to take Tylenol, because it could mask a fever and infection. I can’t take anti-inflammatory drugs, because of my kidneys. So, I pack my head in ice packs, hoping I can get an hour or two of sleep when my head becomes a little numb. At least I don’t have the associated symptoms (except of light sensitivity) that my migraine patients have.

I must remain on this antiviral medication for two more weeks, if I can make it. The CMV viral load has come down. We are trying to avoid more transfusions (I had five in Seattle this summer) because with each one, someone with such a compromised immune system as me, is put in danger of an occult infection. This is where I’m at.

Denise is back at work with mixed feelings. She wants to be home with me.  I think it is good for Denise’s sanity to get away from me, from not hearing about my constant symptoms and watching me struggle every day. Greta, the Saint Bernard is watching over me.

Ramblings: More Self-Pity

I am certainly not a superstitious person, but if I were, I would believe that some great curse has descended upon my life in the past two years and—while there are good spots now and then—the trend does not seem to be changing. I think it seems so severe to me because, for the previous 62 years, I felt really blessed. I have five healthy children, who have turned out to be fantastic human beings. I have been in very good health without much of a taste of suffering… until now. I remember thinking, before all of this started, that life could not be any better. This previous life juxtaposed against my present life, I’m sure, intensifies the distress.

I do know several facts, for one, the line between venting (what I think I’m doing here) and self-pity is a fine line, easily crossed. I also know that others have suffered far more than me, many in complete silence. I also know that there are limits to human empathy.

My professional calling was to listen to other people’s complaints. I thought I was very empathetic. But now I know that I could never live in some else’s skin, feeling what they feel, nor can I ever hope to communicate what I now feel to others. Suffering isolates you from people, because you start to live in a private world that, unless you are a gifted poet, can never express appropriately. I regret those times that I didn’t listen to the suffering of others more carefully.

My curse seemed to have started with two, unrelated, back to back freak accidents in 2017. One cause a complete tear of my left rotator cuff and the other a partial of my right. The pain was constant and pretty severe from that point forward (I am happy to report that pain has been gone for 3-4 months). In June of 2018 I was at Swedish Hospital, having a shoulder surgical evaluation (both shoulders were deemed “unrepairable”). While I was walking to the surgeon’s office that morning, I had a call from my sisters that my mother had passed away. I had to stuff the grief as deeply as I could for on that day, I was also starting to host a week-long wedding party for my daughter. My next call from my siblings, a few of days later, was to inform me that they were having my mother’s funeral without me. This created tension within my family that I had never experienced before.

The next event was when I flew to Tennessee in October to say goodbye to my mother at her grave on my own terms. It was during that trip I first started to notice some vague symptoms (I would call it malaise), which, in retrospect, I think was the beginning of my cancer.

In December, my vague, mostly neurologic, symptoms intensified. I suspected I had ALS, which I knew was a death sentence. It was about this time I had a call from my brother who reported to me that he was very sick, with his own bone marrow cancer (different than mine, and mine was still undiagnosed) and he was asking me to be a donor of stem cells to him. I said yes; however, I had the intuition that something was very wrong with me. I was on a long wait during the Christmas holidays to get in to see my doctor.

It was January 11th that my doctor ordered some labs, which showed I was in complete renal failure and I ended up at Peace Health by that night, fighting for my life.

Since then, there hasn’t been one hour of one day without some significant symptom plaguing me. It was either pain, diarrhea, nausea, vomiting, weakness, neurological symptoms, or many others, often all at once.

My bother has been in worse shape than me at times and still has not had his stem cell transplant due to very serious complications leading up to it. I’m not sure he can survive what I just went through in his weakened state.

My nephew, David, during this time has also become very seriously ill and his future looks grave. My sister has fought hard to keep her son alive, but she feels like she is losing him now. What makes that situation most frustrating for all of us, is that was preventable or at least treatable at one point.

I am so weary of bad news and suffering that I call it suffering-exhaustion. There comes a time when you start to give up any hope that you will ever feel well again, even for a flighting moment, or that things will go well again. I have begged God for mercy for months to help me turn the corner, to give me a single day of respite and I’m still waiting. I pray too for my brother, my sister and my nephew daily.  Mike