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Ramblings: Life Expectancy

I think I am considering this topic for several reasons. The main one cam, as I laid in my bed beneath the warm covers this morning, I listened to NPR’s Morning Edition on my I Phone. They did a story about the life expectancy in America is dropping, while in the rest of the industrialized world it is not. I won’t diverge into that specific topic except to say it is due mostly to “diseases of despair,” especially in America’s rust-belt, red states. It is from drug overdoses, alcoholism, suicide and etc.

Life expectancy for me, is a topic that is in a lot of people’s minds (I presume) although they would consider it taboo to ask about. So, I am attempting to answer a question that they (including my own kids) feel they could never ask. It is also a good time to address it as things are stable right now.

First of all, I must say that none of us know, precisely, when we are going to die. You’ve heard the stories of people being given x number of months to live by their doctors and they live many years longer. Then, on the other hand, you hear of people who were young and in great shape who suddenly die from natural causes, like a heart attack, or are killed in an accident.

I must also add that Multiple Myeloma is considered, at this point in history, incurable and it is a family of different cancers that behave very differently. So, to look at the probability of death, you must look at the specific sub-group and not at the cancer as a whole.

According to the American Cancer Society (whose data is a bit dated) upon my diagnosis in Jan 2018, my life expectancy was 8 months. This is because renal disease is one of the most lethal side effects from MM. This subgroup reflects the 10% of MM patients who present, like me, as renal failure. While I’m now in my 11th month (exceeding those expectations) complications from renal failure is still the greatest danger to my survival and that is why I am constantly asking for your prayers about it.

Things are stable for me right now. As I’ve mentioned, my anemia is getting much better, and the extreme fatigue from it was my greatest symptom. I don’t feel normal, but I’m feeling far better than I was even a month ago. The side effects to my chemo is minimal (a few days of diarrhea per week).

My chemo is low dose, one injection every two weeks, and seems to be working, as my bad proteins are continuing to go down. Here is where it gets tricky in making any kind of prediction. MM is notorious for mutating and becoming resistant to treatments. While some people will enjoy up to 30 years of relapse-free living, the vast majority will enter back into a crisis sooner or later. On the good side, there are far more treatment options than before. On the good end, some specialists are now using the term “cured” because a certain therapy put people in such deep remission that there is no trace of the cancer any more.

The most effective treatment for my situation is the stem cell transplant. While we were praying for this deep remission, I only got a partial remission. When you try to measure the cancer cells directly, there is none to a trace on the tests. However, the evil proteins, that the cancer makes, is still being made and for that reason we know the cancer is still there.

Going forward, the most important predictable factor of how long I can live is my renal function.  For example, a normal filtration rate is above 60 ml/min. Mine is around 19-20. There are 5 stages of renal failure and I’m at stage 4. If it dips to 15 ml/min, I will have to go back on dialysis and my prognosis will suddenly become far more grim. If my kidneys stay stable where they are, I have to follow a very strict diet to survive, but it may not have such an impact on my lifespan. My prayer is that it would at least improve to 29 (a real miracle would be up to 60) because a filtration rate of this level would allow me to have a bit more quality to my life.

The average life expectancy for a man in the US is about 78 years. I had planned on this. . .  up until I got sick. Now, if my kidneys heal some and if the present treatments keep my cancer under control for 5 years, I think a cure would be found during this time. Then, I would have the potential of living until I’m in my 70s. I can’t imagine 80s or 90s, like my mother had. But if my kidneys go south, all bets are off and I’m back to looking at months.

As I’ve said before, the specialist tell me there is absolutely nothing I can do to change the course of my kidneys. However, I am drinking lots of fluids, become almost a vegan, taking 4 daily supplements that have only a tiny bit of evidence of being able to help kidneys, and I’m exercising . . .  oh, and I’m praying my heart-out daily.

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I will mention one more risk to my life span. This is considered yet another taboo topic and that is the risk of me taking my own life. I feel I’ve been close to it three times in the past year. Twice in the spring when my suffering was intense and unrelenting. The third time I had serious suicidal ideation was in September, when I found out the stem cell transplant did not give me the remission I was hoping for. This is yet another battle that I must fight, that for my own mental health. Besides going from being very healthy to, overnight, having two potentially fatal diseases (cancer and renal failure), I also have a horrible neurological condition that is constant. These things along are quite depressing. But then you add to that, that at this juncture at least, it looks like my career is over (I don’t think the hospital is going to take me back), My retirement plans are gone, I rarely see my wife (who works 10-hour days and comes home and falls directly asleep) and am alone 95% of the time, staying sane is a formidable task. I have to honestly say that I’m struggling to find a new purpose in life, beyond just trying to stay alive.  Pardon the typos as this ended up being much longer than I intended and I have house cleaning chores to do and don’t have the time to proof-read. Mike

 

UPDATE: 12/1/19

This is brief follow up since my last posting about my health status.

  1. I’ve started a new medication (propranolol) to try and control the muscle twitching  and so far there are some positive signs but improvement is not clear.
  2. My renal labs, which I shared in great detail previously. . .  well, it turns out they were given to me by error by my doctor’s office. Those were not my new labs as they thought but were a test done months ago. In summary, my immediate labs, like potassium, look better than previous thought, however, my longer term labs, creatinine, looked a little worse than thought.
  3. My test to monitor the evil proteins that my cancer is still on a steady decline (see the graph below) which means that we do not change the chemo yet. The goal is below 21 and it is around 100 now.
  4. I’m still feeling much better as my anemia is improving and we had a great Thanksgiving with three of our boys.

Lambda Light Chain Since Stem Cell Transplant

Thanks for your support and prayers. Still my three greatest hopes is a. my renal function would improve, b. the cancer would eventually go into remission, and c. my neuro-motor problems would heal.

Mike

Ramblings: The Seven-day Window of Life: An Exercise

I have a lot of vivid dreams these days. I think that is true for three reasons. First, my sleep is usually interrupted, either by having to get up to have diarrhea during the night, or the relentless twitching.  All of us dream but we usually forget them, unless we wake soon after. The second reason—related to the first—is that I take 50 MG of trazadone at bedtime to try and help me to sleep through those disruptions. As a side effect, I think it can create more vivid dreams. Lastly, it has been such an emotionally stressful year, so much so, Denise and I both feel that if I was magically cured today, we would still have PTSD from what we have gone through. Emotional things, in my opinion, makes dreams more intense and real.

Image result for drawing of crazy dreams

I had a dream on November 21st. It was so vivid, that I had to lay awake for a while to figure out it was just a dream. But in that dream, I was feeling really good and it was a typical day at home, except that Denise was also home (she works these grueling 10-hour days and I am usually home alone, save my Saint Bernard-“mistress”).  In this dream, I went to the mailbox and there was a certified letter from the Cancer Care Alliance, in Seattle. I respect them very much, not just for their medical knowledge, but for their compassion, which I’ve had a hard time finding elsewhere. I opened the letter and started to read it on the way walking back, down the hill, to the house. The letter was to inform me that I would die on Thanksgiving morning.

As strange as this sounds, because I had so much confidence in them–and despite feeling well–I never doubted the letter for a second. So, I sat down at the table, with Denise and started to talk about how I wanted to spend this last week of life.

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I know in my early, very sick, days last winter I wrote about the last day of life, but this is a little different.

This is where this gets really odd. I sat at the table trying to plan that last week. But sometime during that planning, I woke up… and continued planning what I would do in that situation, although I knew then that it was just a dream.

My first response was thinking about all the things I still don’t know. I am so curious about this universe that we live in that I could be a student of it 24-7. So, I contemplated taking a rapid course on understanding the mathematics of Quantum Mechanics (which I still don’t understand, although I do understand the basic concepts). I still want to understand geology better and, while a great student of history, there are still areas of the world, like China and India, whose ancient history I’m not familiar with.

While I’m not political (seriously, I don’t care what political party inhabits Washington’s power structures, as long as they are good people, honest, and smart) most of you know that I cannot stand Donald Trump. I thought I would work even harder to show how terrible he is during that last week, especially to those evangelicals that somehow see him as their new prophet. But I know that it would be a complete waste of time because his base is locked-in so deeply, so invested in him, that facts don’t matter anymore.

My next thought was about what I could leave to benefit this world. I am almost done writing, what I hope, will be my best novel, Rock Harbor. Maybe I could finish it? But that writing is for me and a few (very few) reader’s entertainment and not much else. There is another book I want to write to discuss the very fundamental philosophical ideas of existence, both ours and God’s. But that writing would take up every moment of the entire week and I would still leave a barely readable mess (based on the way I write in layers).

I thought about taking what money I have and creating a foundation for Syrian refugees. But that too would entangle me in so much red tape that it would consume a full week with nothing to show for it, plus, I do want to leave Denise and her new, healthier and more handsome husband a debt-free world.

I thought about doing a crash course in learning a new language. I could refresh my Arabic so that I could be conversant in it again, or start from scratch in Italian. But how far could I get in it, in a week? And for what purpose?

I would eat a cheeseburger, one of many things that I can’t have now.

To summarize, after lying in bed for an hour or more, I finally reached the conclusion of what I would want to do that final week. I would want to call all my children and grand children home. I want them all to stay until the end. I want us to put away all electronic gadgets and that we sit around and talk and laugh. I want to know their dreams, their fears, and loves.

I want the dialog to be brutally honest. I’ve always been a candid person and I cannot count how many times I’ve been told, “Mike, what you said, makes you look unspiritual (or fill in the words) unprofessional, immature, too silly, too serious, offensive, and etc. However, I value candor and honestly over pretense or doing the “right” thing, socially. I despise “oughts.” Maybe that’s why I have very few friends. But I am kind and don’t abuse my candor.

I had always thought that on my death bed, I would want to be 100% candid. I want our conversations to be real and with nothing held back. Of course I doubt God’s existence at times…  but other times I don’t. Of course I’m as depressed and scared as hell. I am certainly no hero, nor is it my aspiration. Then I would ask, “Was I a bad father or husband? Tell me. What did I do wrong.” If I agree, I would recant and apologize for it. I want to know the heart and soul of my family in a deeper way than I have since they were toddlers. I want to know Denise better than what 37 years has given us. I want to know what’s on her deepest heart… even if it were resentment toward me.

I would also want to draw in my childhood family, including my sisters and brother. My brother, quite ill himself, could not make it… except in this dream. While our family had been close, we have drifted apart… especially since the loss of my mother two years ago. As with my own family, I would want to draw out this “old family” to talk honestly and seasoned with compassion toward one another.

Image result for a drawing of a family sitting around

During this time, enshrouded with the laughter, stories, and tears of my family, I want to enjoy good music, of all types. I want to look upon beautiful vistas… both of nature and applied to canvas by human hands.

I think this is sufficient for that window of just seven days.

As an exercise, I encourage you to spend 30 minutes thinking through this and deciding how you would want to spend your last days on this planet. Don’t put off too many things or it may be more than seven days can contain. If it is concise enough, maybe you should put it in your advance directives. Mike

 

UPDATE: November 26

So, I have some of my results back. I will say again, I’m sorry for giving so much detail on these posts but this is also the space that my family is updated on my progress or lack of.

Labs

My hemoglobin (best measurement of anemia) is much better at 12.9 (normal is 14-16). That’s the best it has been since I became sick in Jan 2019. I feel much better, reflecting that improvement.

My renal labs are okay. Now, I will not say that with strong enthusiasm as there are caveats. Yet, in the same breath, I am deeply grateful as they could have been much worse.

My Creatinine (the most important, simple, measurement of renal function) has dropped from 3.4 to 2.9 (normal is below 1.2) and that is good news, and the situation could have been much worse if that number had increased. But that number also reflects a period of having a very severe diet (avoiding animal protein for one) and there is no room for dietary improvement.

My BUN (a less important measurement of renal function and is known to fluctuate) increased from 36 to 44. That number does not worry me much, even though it rose.

My potassium has remained fixed at the very top of the range at 5.1. It is my most dangerous toxin.

Neurologist

It was fun to connect with an old colleague. He was very thorough and found nothing new, that I didn’t already know. While what I have is very rare (and I knew that) he is willing to work with me, based on the research I’ve done. We are starting a new and rather benign medication today. He is also going to call a friend of his at the University of Washington, who is an expert in all kinds of neuromuscular issues, including twitching. He may have more ideas.

Summary

I’m not in any kind of immediate danger or crises and for that I am very thankful. I do wish, and request your prayers, that I can move further from the dangerous edge by my kidneys improving and my cancer going into remission.

My test looking at my evil proteins, are not back yet. I will post them when they are back (next week).

Thank you again for your concern, prayers, and support for our family.  Mike

 

Update: November 25th  

As I mentioned before, for the cancer victim, their lives are marked by a sequence of pivotal moments where information will be disclosed that tells them if they are on a path to a horrible death or have some hopes of recovery and many years of living. It is the roller coaster ride from hell. It can start with a first biopsy report,  bone scans, or monitoring blood tests. It takes a huge amount of spiritual/emotional effort to live in some level of peace in this life. It has been my experience that those who say, “Don’t worry, just give it to God and he will solve your problems,” are; 1) usually people who have never lived through something like this and, 2) are the first to abandon you when things go south because, your situation of having a bad outcome, does not fit their tidy paradigm of a prosperity gospel.

Image result for roller coaster from hell

With those things said, tomorrow is one of those pivotal days. It is shaping up to be a very busy day. I start with early morning labs, then see my oncologist, then see a neurologist (out of town) as a new patient, and return to Anacortes for chemo in the afternoon. What’s at stake are three big things. The first two will be determined by my labs and include my renal function and the level of evil cancer-producing and kidney-killing proteins in my blood. The third issue is if the neurologist can help me.

Labs

The last time I got labs, two weeks ago, my tests showed a decline in renal function (after months of some improvement). It was a mixed result as some renal tests were the same or better, but the crucial ones, creatinine and potassium, were elevated. This has put a dark cloud over my life since then, even though I’ve tried hard to deal with it (I had to have a few crying sessions when I’m alone). You see, I have an intense phobia about going back on dialysis and I’m just a mouse’s whisker away from that. When dialysis is combined with my type of cancer it severely limits your lifespan to months. But that isn’t even the worst part. When I was doing dialysis my quality of life was zero. It made me feel horrible 24-7, to the point, that I would rather die now than to return to it. I know that dialysis makes some people feel better, but it is not true in my situation. So, there is a lot at stake in those labs. I pray for a good outcome but try and prepare for the worst. I am doing everything I can possibly do to help my kidneys. My diet is incredibly restrictive now, no animal products including meat or dairy and avoiding the 90% of the vegetables and fruits that have a lot of potassium. I am basically left with oatmeal, soy, and kale and that is no embellishment.

As mentioned, we will also be checking my evil proteins again to see if the chemo is continuing to lower them. I think the last time they were 140. Below 26 is the goal. I started out in January around 3200.

Neurologist Visit

Trying not to be redundant, but clear, my first symptoms, roughly one year ago, were neurologic. I was suspecting that I had ALS and had even told Denise around last Thanksgiving for her to start preparing to be a widow. The neurological symptoms worsened in December and I made an appointment with my family doctor, which was not available until January. I was not in a big rush as I knew that ALS had no hopes of treatment but was a death sentence. Never in my mind did I suspect renal failure as the cause of my neurological symptoms as I had no typical renal failure symptoms.

Once I was diagnosed as being in serious renal failure and was started on dialysis, we expected the neurological symptoms to resolve. They did drop a couple of notches (like I was losing the ability to swallow and that improved), but the original symptom of fasciculations (muscle twitching) has not. It is my dominate symptom now that the anemia has improved as has some of the chemo side effects. I have had a hard time relaying to people, especially my doctors, how serious this twitching is. Some react as if it is funny. It is not. Only at the Cancer Care Alliance did anyone take me seriously. They had me see a psychologist to help with the stress of the constant twitching and we tried magnesium supplements and two different medications. None of them helped.

I don’t know if you have ever had a muscle twitch. About 30% of people have them rarely. But try to imagine having 10-40 muscles twitching, 24-7. If I am walking, I don’t sense it as much. But when I am sitting or tying to sleep, it is very pronounced to the point I feel at times that I’m about to go mad. I cannot count the sleepless nights I’ve had because of the overwhelming twitching. On more than one occasion, if I had had a gun, I think I would have used it on myself in the middle of those nights, just to stop the twitching. That’s why is also so frustrating to have medical providers shrug their shoulders or to try and make some joke about it but to do absolutely nothing to try and help me.

Having worked my entire career in neurology, read all the papers, and having talked to three of my neurologists friends, I realize that maybe nothing can be done to help me. There is very little written about what I have. But there are a few things that could be tried to help if someone would help as it is unethical to write prescriptions for yourself.

I deeply solicit your serious prayers and thoughts for these issues above. I will add that my brother Gary is more ill than me right now with a form of leukemia and is being re-admitted today for intensive chemo.

Then the Good News

I saved the good news to last in this posting because I have the sense, when I put it first, a few people only read that part and say to me, if they see me, “I read your blog that you are doing fantastic.” But the good news is that my exercise tolerance is continuing to improve. Just a couple of months ago, I could not walk from the house to the car without being very short of breath. My heart raced all night long. On Saturday, I climbed Mount Erie, the 1100-foot mountain on our island. I did it slowly, but made it to the top and back down again with a round trip of 5 miles and 800 feet of altitude gain and loss.

Gratitude 

I am grateful for the progress I’ve made. If I had just a bit more energy and exercise tolerance, if the one day of week of diarrhea (from the chemo) would stop, (I was having it every day after my stem cell transplant), and if the neurological symptoms were gone, I would feel I was back to normal.

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Me at the Summit of Mount Erie on 11/23/19

I am grateful for Jerry, Kevin, Jean, and Diane, who always sincerely ask me how I’m doing . . . and then pause to listen to my answer. There may be others that I’ve forgotten to mention.

I am always grateful for Denise (and my kids) sticking with me and loving me, when there isn’t much left to stick to.

I am grateful for my readers here, who my reading and following, tells me you care.

Mike

 

 

 

Mini Ramblings: A Dabble into The Alternative Medicine World

Just with this title, I can hear some people cheering (and a few showing their disappointment in me), however, I may be disappointing most to the true believers (in CAM) by the time I am done.

If you know me, you know I am a very evidence-based-medicine person. I love facts and am skeptical about new information until it is proven and I’m not even from Missouri (I’m working on a long, two-part Rambling on the idea of searching for truth). I have been very skeptical of CAM (“complimentary” and alternative medicine) and for a good reason. It often fails the tests to see if it works. For example, back when I worked for Mayo Clinic, there was a big market for Omega-3 oils with the claims of reversing memory problems or even Alzheimer’s Disease. Our (neurology) department (and our department was considered # 1 in the country at the time) did a very good study to look at the role of Omega-3 oils in Alzheimer’s Disease. The study was double blinded (neither the patient or the doctor knows who is getting the real Omega-3) and the study was of a long duration (I think 5 years) with a large patient population. In the end, the Omega-3 showed no benefit. But that didn’t slow down the supplement companies from continuing to market it for dementia. There are no peer-review studies for the so-called “jelly fish derived” memory supplement that I know of (and I’ve looked), although their commercials imply there is.

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I believe, and believe still, just as Julie Yip Williams, in her books Unwinding the Miracle, stated, that she was not going to turn to CAM to treat her cancer not matter how desperate she becomes. . . but then she does. It does not help, in a matter of fact, it set her back.

Steve Jobs turned to CAM early in the course of his liver disease. Rich people often make themselves the captain of their own ships. At the end, he regretted that decision.

I put complimentary within quotes above, because the reality of CAM is that it is often “competitive” to evidence-based medicine. Both the cancer center in Seattle and my local cancer center had to break off relationships with CAM providers, because those providers told the patients to do things that the cancer centers opposed, such as stopping their chemotherapy.

With all of that said, I understand in a very personal way why so many people do turn to CAM for the treatment of their chronic diseases. It is very disheartening to visit medical provider after medical provider an be told (my paraphrase) “You’re screwed. You did nothing to cause this and there is nothing you can do to help. A few people get better but know one knows why.”

Difference Between Santeria and Voodoo

You may not know this but there are two Googles (maybe more). One is the public “Google” and in the shadow is “Google Scholar.” While the main Google searches for the web pages of paying customers first an then the most sought after second, the Google Scholar reviews the research literature. I’m talking real research, such as printed in peer-review journals.

After trying really hard to help my kidneys and then, this week, getting labs that were worse, I spent several depressing hours reading the same old studies (found in Google Scholar) about kidney damage and reversing it. There were no conclusions of anything that could help, not even drinking more water. The same is for damaged motor nerves (which I have, causing significant weakness and a constant twitching and jerking of my muscles that drives me crazy and keeps me awake most nights).

In frustration, I switched back to normal Google and presto, there were hundreds of claims and products to reverse renal damage and motor neuron injury. I, which I don’t normally do, sat and listened to their spiels about their products. But then I did research (back in Google Scholar or other sources) to see if what they were saying had any possible merit. The vast majority were simple bold-faced lies. But a few of them did have a little supporting data. Often it is where a certain supplement helped kidneys or motor neurons in the lab, but didn’t prove helpful in people. Some of them had no human studies. Some of them had one small open-label study by some obscure doctor in some obscure village in India or China. . . on goats.

But before I get to the supplement experiment, I will mention one more of my dabbles in CAM and that was massage. I decided to go for a deep tissue massage soon after I got home from my stem cell transplant. I was forbidden from doing acupuncture because the needles could cause a life-threatening infection. Also, I had a previous deep-tissue massage (years ago, which we won through a raffle). I felt nervous having this strange woman rubbing her hands all over me (I would have felt more uncomfortable having a man do it from homo-phobia tendencies, I’m sure), but it was GLORIOUS.

So, I went to see this masseuse and this time I had to pay for it. It was a mixed bag. The actual massage was also glorious, but there were some hurdles. When I had to fill out the health questionnaire,  it looked quite clean (based on the questions asked). Then I told her that I am quite ill, but that illness was not captured in the questionnaire (like it didn’t ask, “Do you have cancer?” or “Do you have renal failure?”). Once I told her I had cancer, I think I became a leper in her eyes. She refused to work on me unless I had my doctor’s permission. I was sorry to say that my personal doctor doesn’t give a rat’s ass if I get a massage or not and probably would think asking for such a letter was silly. I finally talked her into it, promising her that there is no way she will dislodge cancer and cause it to spread.

But the real deal breaker was about a third way through the hour-long treatment, which she was doing in silence. She asked me, “Are you doing any other alternative treatments or nutrition?”

I answered, “I’m on a very extensive diet due to my stem cell transplant and my renal failure, but not through an alternative medicine person.”

There was a pause for a moment and then she added, “Well, you don’t get cancer for no reason.”

I almost pissed in my little gown . . . or blown a gasket if you like. I was so angry, I remained silent for the rest of the treatment and did not make a follow up massage. I did not want to hear the bullshit about my cancer is my fault because I ate a Pop Tart when I was seven or that I used Roundup once in the 1990s. There as been a lot of epidemiological studies about the risk factors for Multiple Myeloma and still very little is known (I’ve mentioned this before) except for a mild risk among carpenters, farmers, and petroleum industry workers. I am none of those.

So, I wish I could continue massage, which could help my twitching and lingering neck pain, but I will have to put it on hold because the stress of hearing the bullshit each week, I’m afraid, would reverse any benefit. I will try acupuncture when I am cleared, which I think will be next June if I am still alive.

So, back to my experiment. I did find about three supplements, which were mentioned in scholarly studies, that helped mouse renal (kidney) or neuron cells to regenerate in the lab but, so far, have not been proven to help humans.

But, when the mainstream evidence medicine doesn’t have any ideas of self-arrest (a mountaineering term but in this case, doing something myself to help stop the progression of my disease) to borrow a term from my pal Image result for winkDonald Trump, what do I have to loose? 

Now, if you are in a multiple level marketing company and are selling supplements, please do not contact me to get me to buy your cancer-busting miracle supplements. I’ve had too many of those e-mails and private messages. If you know of any alternative treatment that has some evidence-based research and you are dying to share that, go ahead, as that will not offend me.  Mike

PS I am really sorry about typos here. I wrote this at 80 MPH without proof-reading because I supposed to be somewhere.

Update 11/7/19 + Mini Ramblings: Anger and the Assumption of Intent

I continue making progress, at least in the way I feel. My specialist at the cancer center recommended that I try to stop a medication (Dapsone), which she had started to prevent pneumonia. This medication can cause anemia because one of its common side effects is to destroy red blood cells. I was supposed to stay on it until December. After stopping Dapsone two weeks ago, I have noticed a significant improvement in my exercise tolerance. My last hemoglobin was 11.2 (normal is above 14) and I bet when I get my labs next week, it will be at least 12. I even tried running about 50 yards and didn’t die. There is no way I could do that even 2 weeks ago.

I am continuing my chemo every other week with minimal side effects (just one or two days of diarrhea) so I’m thankful about that . . . uh not the diarrhea but the low incidence of side effects.

My major symptom these days are my neurological. I do have an appointment with a neurologist in two weeks. However, with my reading of the studies and talking with this and another neurologist friend, there is probably not much that can be done to help.

We measured my evil proteins (Lambda light chains), the proteins that my cancer produces, last week and it is continuing to drop. It should be below 26. When I was first diagnosed it was 3400. After the stem cell transplant (we were hoping for 0) it was 260. Then after 4 weeks of chemo it was 174 and now, after 4 more weeks of chemo, it is 141. So, we are still moving in the right direction, but not fast enough for me.

 

Anger and the Assumption of Intent

I keep running into people who have cancer, had cancer, or has a relative with cancer. They often talk about their response of anger with the diagnoses. They assume that I too, at least had a phase of anger. A month ago, I read the book, The Unwinding of the Miracle: A Memoir of Life, Death, and Everything That Comes After. It was written by Julie Yip-Williams and it is autobiographical, about her fight with and eventual death from colon cancer. She is very graphic and open in her descriptions of her disease . . . and her anger. But I didn’t have a phase of anger. Anger has never crossed my mind. The reason that I have not been angry is not because I’m a good guy or have my shit together. I have been very disappointed. I have been frustrated. I have been depressed to the point, of at least twice, of seriously considering taking my own life. Glad I didn’t have a gun in the house or maybe I would have.

Yesterday, as I was on a hike with Greta (my girlfriend . . . and Saint Bernard) I meditated on the role of anger in these situations. Why did anger not interest or tempt me? As I carefully dissected that mood I soon realized that true anger (rather than just disappointment) requires an assumption that it was someone’s or something’s intent to do this harm.

I have had lots of anger in my life. I’ve been angry at people (two that I can recall) who did things to hurt me and hurt me badly. I was pissed at one for almost a decade. So, I am capable of anger. But with both, there was an intent to hurt me.

In the case of cancer, the pure atheist should not have anger because there is nothing out there in this empty universe that intended their harm. It just happened. I use the term “pure” here to separate these people form the atheist who cheats by injecting meaning into the universe, where there can be none. For example, they say they are an atheist but still say things like, “The universe is pulling for me.” Or “I do believe that all things work for the good.” Or I’ve even heard, “I’m praying for the universe to step in and help me.” At one point Julie Yip-Williams describes herself as an atheist, but of this later type. She pumps a lot of spiritual meaning in her godless universe. It is from this paradigm that her anger gains strength. The universe failed her and did so with intent.

Theists have an assortment of concepts of God. Those who see God as a micromanager, where every detail of their lives is orchestrated by God, I believe are most prone to develop anger in face of their cancer. Either spoken or implied, they see God as rewarding them for their good behavior and punishing them for bad. So, when they felt like they were a good person and then get this terrible disease anyway. That pisses them off. They get mad at this God who either intentionally did this to them, or at least, allowed it to happen.

But I have a different concept of God. I think he is bigger than the local micromanager of my life, who cares what color of shirt I wear and who clears the road of fallen tree branches as I drive into town. I do believe that the evil in the world is real. After suffering a great disappointment, years ago, in the midst of my anger I discovered one of the greatest theological concepts within Christendom…”Shit happens.” A more proper Christian theologian will call it something like the fall of Adam, or simply The Fall.

So, the Christian concept is that this world is full of shit. Little kids get terminal cancer, and they did nothing wrong to deserve that. It is not until we come to grips with this state of existence can we be set free from the sense of intent and the anger that the intent breeds.  Mike

Ramblings: Reminiscent of a Black and White World

(Note: Black and White in this narrative is pertaining to a much wider contrast than just race)

I have a few scattered memories going all the way back to when I slept in a crib. Maybe I slept in that crib until I was three or four, but it couldn’t have been later than that. I remember learning of the world around me through the behavior and eyes of the towering adults, which had inhabited this strange, new world for much longer than I had. Maybe it was a congenital way of thinking or again, maybe it was learned, however, the essence of it was that the world was a place of order, of cause and effect, and where goodness triumphed.

I became familiar with the concept of death through TV shows. I saw Matt Dillon shoot and kill Indians and bad guys on Gunsmoke. Later, death came much closer to home when my grandfather and then uncle died. I understood then that our parting from this world came to us all but would only come when we were old and frail and wanted to die…or if we were an Indian or bad guy.

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In this perfect world of the 1960s and 70s everything was well-demarcated into orderly causes and purposes. But the first crinkle came into this peaceful world of mine when my neighbor was killed in a car wreck. She was 19. I was stunned. I was only 6. I did not know that death could come to someone who was not old and frail, who was not an Indian or a bad guy, and who lived so close. Joyce was a Methodist and in my primeval construct of God, he would protect even Methodists…although we were Baptists. God would certainly protect us Baptists, wouldn’t he? We were told by our preacher that all things worked for our good.Image result for free old black and white photos

In the subsequent days after Joyce’s death, there was much discussion about the cause and effect within the troposphere above me…in the space where adults whispered and winked to one another. There were suggestions that she had done something wrong. This became clearer during the trial about her accident and I think my own mother had to testify. I’m nor sure why there was a trial, except there was a family who was also seriously injured by the accident and they were trying to determine fault. During this time, I overheard the adults say that Joyce was upset the day she was killed. Either her boyfriend had broken up with her, or he had been seen with another woman. I don’t remember. I was probably too young to understand anyway. But she went to find him, driving very fast and passing a car on a curve between our little hamlet of Fall Branch and the “metropolis” of Kingsport.

After hearing those conversations which inhabited that upward space, I listened and tried to make sense of them all. I had to, somehow, insert those dialogs into my black and white world. So, Joyce was a bad guy and I never knew it? But then again, I heard my mother pity her, pity her and her entire family, as if it wasn’t her fault. I mean, one could reason that if the family in the other car had not been there—meeting her head-on—on a curve, that she would have been successful in making to her boyfriend’s house. Maybe then she could have confronted him, and like in the movies, he would have recanted, and they ended the whole mess in a great embrace and such a passionate kiss that it would put Wesley and Buttercup to shame. Then Joyce would be a romantic heroine…and not a bad guy after all, right? But the people in the other car were Baptists, good Baptists. The father was a preacher and they thanked him for protecting them. They were hurt badly though…but were not killed. Maybe that’s the way God works, killing the Methodists and only maiming the Baptists, putting them on that curve at the precise time. Is that right? Image result for free old black and white photos

I’m sure that my orderly world had other challenges during that epoch of my life, challenges that I don’t remember now.

But there was Charlie—a year ahead of me—and his demise against a concrete bridge parapet…and another classmate—whose name now escapes me—but I attended his funeral.  He also died in a dangerous curve on a county road when he met a box truck in his red VW Beetle.

The next major one—and I remember that one too well—was yet another car accident. This time it was a close friend, Amanda. I did not attend her funeral, regrettably, because I was too messed up about it.

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Amanda was not racing to confront someone in a high state of emotions like Joyce was. She did not pass on a curve. It was a freak accident. She was on her first solo drive just turning sixteen. She had asked her parents if she could take the family pick up down the road (a very short distance) and get the grocery item her mother wanted. Somehow, the tire of the truck went off the pavement and pulled her into the ditch at a relatively low speed. The truck rolled over, her coming out the window and being crushed. I was devastated. I could constantly see her long, crinkled auburn hair and big smile, (encaged in braces), in my mind, thinking it couldn’t be real, that I would run into her once again when I came to visit her sister. But I never visited her sister again out of my shame for missing her funeral. She, and her entire family, were good Baptists. But then when I tried to hammer that event into the shape of the world, which I had imagined, it had to be very malleable to fit…and it took a great deal of hammering. Image result for free old black and white photos

It was still later, while in college, I stepped into the world colored by John Calvin. While my contemporaries were maturing into an adult world with less certainty, I was venturing into one with much more. Within this construct, for God to be big enough, he also had to have total power over everything. This God also had to be totally just, totally loving, totally good, and unchanging. He even had to have total control even over my thoughts and choices, including my choice to love and follow him…or not. Considering that mindset; Calvin’s God decided before we were born if we were going to be good or bad and we had no choice in it, yet, those we considered bad, were to be despised for who they were. But oddly, us Calvinists were outraged when the “liberal sociologists” first suggested that sexual orientation was not a choice. We insisted it was, and a very bad one at that, yet—at the same time—maintaining that none of us had a choice in anything because God—as powerful as he was—preordained us for who we were. Confused yet? God was also going to condemn all the bad people to an eternity of suffering in Hell’s fire. So, the bad people were created as a simple fuel, like kerosene or kindling. Burned, yet with a soul. Unlike kerosene or kindling, the burning would come with great agony. There were a lot of “fuel people,” with the homosexuals being only one small fragment. There were more bad ones than good. The bad included the Muslims, the liberals, the Democrats, the Catholics, and even the Baptists and Methodists. In our deeply personal places, we hated the sin AND the sinner. black and white white photography house building old atmosphere home mystical broken abandoned darkness decay ruin black furniture room monochrome old building black white weathered mysterious transience bed dilapidated photograph weird creepy gloomy image mood past leave masonry frightening lost places pforphoto break up lapsed ailing run down chest of drawers passed bedding monochrome photography

At the same time, thinking that we also had no choice but to be good, but because we were good, God loved us most. Conveniently, we were highly esteemed in God’s economy, but in—crocodilian—humility, because this higher esteem was bestowed upon us. In other words, God had created us with irresistible goodness and (paradoxically) we wore that goodness in great humility (wink, wink) …and we were—honestly—proud about that. We felt like only we had brains big enough—bigger than the Baptists and Methodists’ brains at least—to understand these—what seemed like—absurdities. It was the kind of absurdity as the “Liar’s Paradox,” which implies, If I state that I’m a liar, then it means that statement is a lie, which means I’m not a liar, which means the statement is true, therefore what I just said was a lie, and therefore I am a liar and so on and so on. This endless absurdity reminds me when I was about seven and I discovered if you hold a hand mirror in front of another hand mirror you created this tunnel of repetitive reflective images that go on to infinity. I thought I had discovered a portal to another universe, and it was my secret. Image result for free old black and white photos

Like my Calvinistic contemporaries, I wanted to regiment my life like the citizens of Calvin’s Geneva in the 1550s. The blacks had never been blacker and the white, whiter, with clear boundaries between the two. It was like a checkerboard, where each square, black or white, was carved out deep as receptacles for the interpretation of real-life incidents. But those events came in round and sometimes triangular shapes, making the fitting an exercise in contortionism at its extreme.

This worked out fine for a while, a short while. Then other wrinkles appeared in the platform upon which these ideals were construed and practiced. Like when my friend Mark, the greatest guy I had ever known, and a devout Calvinist, died a horrible death at age 26 from a brain tumor.  Until the end he praised God for giving him the gift of the tumor, knowing it was his destiny from the hand of a loving and merciful God. I saw no mercy in his suffering and death. But through mental gymnastics and squinching of the squares, I was able to continue in the black and white world. There, I knew everything, all the answers, with complete certainty, especially all matters of God and his thoughts. My mind knew all the boundaries of God and knew them well.  It was a just world, so I thought, where the good people ended up on top and the bad people destroyed, by this “loving” God. black and white, london, old people

But then, I met a person of color, he was scary at first. Then I met another and another. I had been brought up within this black and white world that the white people were superior to the “colored.” These people of color were nicer than many of the white people. They were smarter than many, braver than many, and more moral. I saw no inferiority in them. Calvin’s God was not color blind but played favorites. I faced yet another paradox because I liked these people.

But then, as I matured, I saw that those on top were not so good, at least many of them. Some of them were down-right hideous. This didn’t make sense to me. I witnessed the best person I ever met, at least on the surface, was also the cruelest in his private places. This made me to start to wonder…and wander in my faith. Image result for free old black and white photos

Soon I met people of different faiths. I met Iranian Muslims. They were very scary, with their great emotional candor. Later I met Arab Muslims, equally as frightening. But again, they—these bad guys—were better people than many of the people I had assumed were the good guys. They had greater hospitality, greater love, and greater faith with greater certainty.  These bad, “fuel people,” were good people after all. Then I made the terrible slip-up of starting to  love them and loving them I did with total abandonment. Would God be mad at me? Had he made a mistake? Was he confused? I suppressed my own confusion, downward with both hands and it was like trying to hold a sheet of Styrofoam under water.

Then one day, it dawned on me that women were smarter than I had assumed. Many were smarter than me. I already knew that they were kinder, and more mature in their decision making. But Calvin didn’t see them this way, not really. Image result for free old black and white photos

Finally, as I ventured even further from home, I met a whole crowd of scary people. Some were queer. Some were gay…or sexually uncertain. Some were Catholics, some atheists. But most of them were thoughtful and nice. It became even more difficult for me to continuing seeing them all as fuel. The odd shaped pieces from the real world around me were not fitting well at all into the checkerboard squares of black and white, even with powerful hammering…with mighty hammers. The edges of the squares were starting to become gashed on all four sides.

I was suffering from the contortionist’s exhaustion. I paused for a decade to step back and make sense of things. The problem was that my God was too small. He was Bronze-age God trying to have meaning within a silicon-chipped world. He was a God of a 1550 universe, one where the earth was the center and it was only 20,000 miles wide. But we were living in a universe that is 27.4 billion light-years wide with many times more stars than sand grains on our shores. The Bronze-age God is not big enough. The real God, if there and I think he is, is too big to understand. Too big to define. To big put into a box and to build a wall around with our minds.

Model of the Universe, 20,000 miles across, circa 1550

I don’t know the answer to the big questions of why there is evil in the world. I don’t know who is good or bad…but I still can recognize hate and lies in any type. I don’t claim to know why Joyce, Amanda or Mark had to die. I can still hold that God is loving and good, but I can’t claim to know him completely. He has to be a God of mystery, beyond human comprehension to be this big.

I am glad I did not get cancer while I still lived under the shadow of the Bronze-aged God, because if I had, I would have attempted to find meaning and purpose in something awful. I would have been forced to put the “regular icosahedron”-shaped object into the simple square receptacle as if I could have figured it ALL out with certainty. I would have been tempted to be mad at that small God, who should have known better. But it makes no sense to try to grasp with a comprehensive understanding. . . or to quarrel. . . with a God who is this arcane and immense. Mike

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Ramblings: Who Are We? What is Our Purpose?

This discussion will start with a theological introduction, but quickly become practical and common.

The Theological

I’ve been around Presbyterianism for most of my adult life, in one form or another. While that sounds quite homogeneousness after decades of living, it is far from it. My old, conservative, Presbyterianism, sees my present Presbyterian church as not within the domain of Christianity because we support women in leadership roles and don’t ostracize the gay community (to name a few issues). On the other hand, there are those in my present church that would not see my old churches as within the fold of Christendom because they have racism (in addition to sexism) overtones and couldn’t care less about this material planet. I think I observed much more commonality between the Islamic Taliban in NW Pakistan and conservative Christianity, than between the ends of the spectrum within Christianity. But with that said, the point that I was going to make, which is universal to all Presbyterian churches (at least in part) is the Westminster Larger and Shorter Catechism, an old Scottish document (16th and 17th centuries) which expresses in writing the basic guidelines for personal and collective faith within the Presbyterian Church.

The Shorter Catechism, in some ways, is a summary of the Larger Catechism and has the purpose to educate children and new believers into the Presbyterian faith. It is set up as a list of 107 questions with answers following. Now that I’ve made this lengthy introduction, I will get to my point. The very first question (if I remember right) is the following:

  1. What is the chief end of man?
  2. Man’s chief end is to glorify God, and to enjoy him forever.

I probably heard the above statement for the first time when I was a Freshman in college, as this was the year I got involved in Presbyterianism. I probably said “wow” in my mind if not audibly. I know that since then, I’ve heard this mantra quoted over and over and at least a dozen sermons built around it. But did we or do we now, have a clue what it means? I think it is like many clichés that go around all societies, not just Christian subcultures, (such as “All things happen for a reason”), that people spend very little time in trying to understand or define. The reason is that most of us don’t know what it means, at least in the full philosophical conclusion of it. I’m sure books have been written on these statements without concise conclusions.

The Common

In contrast to the Shorter Catechism’s opening statement, life teaches us something very different. We arrive into this world as the “Invisible Man,” who cannot even be visualized until he don’s clothing. Our “clothing” is our accomplishments and contributions to the world at large. It starts at a very young age (this is not about me, but in people in general), “Oh, look, he’s walking, and he is only 11 months.” But quickly it evolves into, “He’s only five and can say his A, B, Cs.” Then it becomes, “He can read a newspaper and he’s just in second grade!” Even later, it becomes, “He’s fantastic because he scored the winning basket!”  You can add thousands of other descriptors of accomplishments but as adults it is often; “He is such a nice person,” “Did you see how much he makes?” “He has really helped a lot of people,” “He has such a big house,” “He has a really nice car,” “He has done so much volunteering for the community,” “He has won so many awards” “He has written such great pieces,” or “He fought in the war, he’s a real hero.” I think the suicide reaches their end when they realize all the above was meaningless.

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But what happens when all of that is stripped away? Are we standing as the invisible man again, naked with nothing, absolutely nothing on which we can hang a “what is my purpose” hat? Dose the first question of the Shorter Catechism work here? I think it is too abstract to give more than pretend comfort. You could get a roomful of Presbyterian theologians, throw in a few Deconstructionist philosophers and the debate about the meaning of this question and answer could go on for years.

Most of us don’t face this dilemma until we are on their deathbeds. Like Private Ryan, at the end of the movie when he is an old man looking at the graves of those who died to save him, asks, “Was I a good man?” We use the opium of busyness to distract us from the really hard questions of life (I want even to mention the big one, “Does God exist?”). We plan and take trips, we watch TV and movies, we read books, and we find something to fill every moment of every day so that the silence doesn’t seep in allowing enough space for the hard questions to condense into language.

I am not on my death bed, but I awaken each morning lying in my warm, comforting bed. We sleep with the windows in our bedroom open, so the ambient temperature in our bedroom is roughly the same as outside. So, for example, the air in our bedroom must have been in the high 30s this morning. I think I’ve mentioned this before here, but the question comes to me, “Why do I need to get up?” It is an abbreviated form of the grand question, why do I exist or what’s my purpose. If I lie, there long enough, the soft answers start to creep into my mind, “Greta the dog is waiting for you. She wants to be petted and let outside. There are dishes that need washing, floors that need sweeping and mopping (thanks to Greta), clothes that needs to be washed and other chores that need to be done.” Is that it? Oh, and there’s books to be written that will be read by few.

This year, as the invisible man, my clothes has been stripped from me. My healthy body, which made all my accomplishments possible, is now rotting from beneath me, and that is out of my control. If I were reduced to just a brain in a jar, still living and thinking, but nothing else, would I have value? Would I have a purpose?

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I am glad that I have had this opportunity to face this harsh reality, before I reach my deathbed. It is not a pleasant process, to give up all that clothes, all those things that made you who your are, father, husband, PA, writer, adventure traveler, and it is suddenly just you, you and God to reckon with meaning. It is also daunting and terrifying to grapple with in a constant undertow pulling you toward sadness.

For now, I will find meaning in doing the chores I’ve mentioned above, loving my family, petting my Greta, enjoying the grandeur of God’s creation as an extension of himself (is that the practical application of the Shorter Catechism’s first question?), laughing when I can, and breathing. I don’t expect most have real answers to these questions (I despise pretentious answers with little thought, just the repetition of clichés). I have great respect for those who simply don’t know and are willing to admit it. I have no respect for those who are not even curious enough to even ask the hard questions.

Sorry for any typos, I need to wash dishes, pet the dog, mop the floors etc. and did not have time to proof-read, or want to find such time.

Mike

 

 

Christina Athena: The Girl with the Headaches hits the Market!

I am happy to announce my new novel, Christina Athena: The Girl with the Headaches, hits the market today.

While some of my other books have been long and convoluted, this is a very simple story that takes the reader into the mind and life of someone who suffers from frequent, life-ruining, migraines.

If you buy a book and read it, I would be most grateful if you write a review on Amazon. This is very helpful for others and book shoppers.  Thanks, Mike