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UPDATE: 2/18/19

  • As I’ve said before, getting my kidneys to work on their own is huge, and will make treating my cancer drop from being extremely difficult to just difficult. I had labs today. In summary, my toxins (creatinine and BUN) are still double the normal limit but have remained flat during two days of no dialysis. This means my kidneys are trying to clear the toxins. If we can get them down to normal and they stay there, these tubes come out and dialysis is over. Otherwise it is permanent. I have another lab tomorrow. Please pray for my kidneys to heal!
  • My hemoglobin has risen from 6.5, 4 weeks ago (normal is 14 and mine is being pushed down by my renal failure) is up to 10.1 today. I can feel my strength getting better each day. I hiked 2.5 miles today, up from 2 the previous days.
  • I’m in the second round of chemo. I will have labs done in two weeks that will tell us if it is working. This chemo works in about 75% of cases like mine (putting me in remission, not curing). If it is not working, it means that my kidneys are being damaged more by the protein and the disease is growing unchecked. Please pray that my protein (IgG Lambda light chain) is back to normal, which is <24 mg/l. I started out at 2658.2 mg/l, 4 weeks ago.
  • I thank God that;
    • My moderate to severe headache (we didn’t know the cause), which lasted 10 days, is gone.
    • My neck pain is improving (we don’t know the cause).
    • That my unexplained tachycardia, while is still present, is now being controlled by, yet, another medication. It could be related to the catheters in my chest, which end up at the right atrium.

 

Ramblings: Caring for the Care-givers

I am finding that one of the most difficult things about being suddenly and seriously ill is trying to figure out how I can care for the care-givers, meaning my family. Of course, when someone like me is seriously ill, the attention first points to me. But then, we must start to care for the care-givers and me, being the one ill and the father and husband, must be a primary source of that care.

The difficulty is having so much on my plate to deal with. The constant ill-feeling and pain. The fear of the unknown, including death and suffering. Then, I must find the energy to provide care back.

I have walked through being a care-giver to the care-giver when Denise’s father was ill and died. She did the same to me when my father and mother both passed. It is hard enough in those situations, when you are otherwise normal, to find the skills and words to provide that care to someone else who is caring for someone suffering and dying. But when it is you who is the sufferer, you must still find the way and the energy to meet those needs and that is where it is difficult.

Image result for Greek monk in a cave

There is always guilt when you are the victim of disease, especially when it impacts people you love. I can’t imagine the guilt if the disease was partially my fault, say I was a two-pack-a-day smoker for 40 years and then developed lung cancer that was directly related to smoking. But even though I had no responsibility to my disease, living far healthier than many of my friends and family, eating almost vegan at times, running six miles once a week (at age 63) and shorter runs three times a week, and then, for no known reason, a medical calamity strikes. Still I feel guilt. I think at times how I wish Dense had never met me, to spare her from this. I wish at times I was living alone in some Byzantine monastery cave deep in Anatolia, where my illness would only impact me and no one else. But I don’t. I live with Denise and I have five wonderful children who care about me. While reassuring and comforting to me, it spreads the grief beyond the borders of myself and that I regret. I always wanted to bring them happiness.

There are so many challenges one can face in life and serious illness is one of the worse. But, finding the energy and wisdom to care for those who are suffering in my wake, is one of the most difficult. But they must survive. They must go on. They must thrive and be healthy, physically and emotionally and I must do my best to assure this course for them. But it is hard.

 

 

Ramblings: Self-Valuation in the Aftermath of Value Evisceration

A long time ago I had a friend who had been the director of the Salvation Army in a large Midwestern city. She had a theology degree and had received a lot of awards for her innovation in helping the homeless population as well as the single moms of her city.

Then suddenly, she came down with a life-threatening illness at age 38. This illness not only almost took her life but left her “bed-ridden” for the subsequent twelve months.

This lady, whom I will call Tammy, told me what an experience it was, during that year, to reach a point that she could accept the fact that God loves her … when she was doing nothing. She always felt that God loved her when she was in charge of so many important tasks, but when she laid in bed all day, pooping in a bed pan, with people having to wait on her, she suddenly felt that pleasure from God dissipating and vanishing. Even though she said that she knew better, that she knew that the Christian gospel is all about God given us full valuation—not based on what we do—but simply by assigning Christ’s perfection on to us. However, it was very difficult to sense that pleasure when she was doing nothing.

I’m going to make a statement that most people will disagree with, however, I stand by it. Most of us, if not all, get our sense of value based on the following attributes; age (youth being better), appearance (being good looking), feeling good physically, having money, having accomplishments, and having a likable personality.  maybe I missed one or two. It is the same in high school as when you are 70. Okay, now for the Christian, they will turn up their noses and shake their heads at such nonsense, as they are on their way to the beauty shop or making a bank deposit. However, it is true. None of us get out of that sense of self-wroth. It is also true, like Tammy alluded to, that the Christian gospel is unique in that it removes, in principle, that tension because, all people are covered by the perfection of Christ and all have infinite value. There is no rich, poor, ugly, handsome, successful, or failures in that system. We are all the same. But none of us live that way. If a handsome, young, wealthy, person with a good personality walks into a church, it is highly likely they, if willing, will immediately be recruited for leadership positions, while the quiet, not so successful person will not. That’s just the way we live, not the way it should be. We also feel good about ourselves, based on these attributes, not based on the gospel.

Now for the atheist, I don’t have much to offer. They must live by this valuation system of looks, money, and accomplishments. But even that system is built on pixie dust and fades away as atheism must end, as I said before, in nihilism. No matter how big of tombstone you leave, nature will eventually erase it.

I know that some forms of Hinduism deal with this through the act of reincarnation. Where you are born into a certain status based on successes in previous lives. But that opens the door for incredible racism as exhibited in the caste system.

I know that different Muslims have a different take on this process, but from the ones I’ve spoken to, they seem to sense their value, in God’s eyes, being based on fulfilling the five basic pillars of Islam.

So, when someone is in my situation, full of life, healthy and busy, and then is struck down in a flash, where they no longer feel good, their capacity to accomplish anything is grossly compromised, where they see the draining of their financial resources because of their illness, and even start to look hideous, suddenly the carpet of valuation is pulled from beneath them. It is very difficult to feel value in this world that bases human value on these other things. I often ask myself, and God, is there any reason for me to get out of bed this morning? Is there any reason for me to go on living and taking up space on a planet where I can give nothing back? Those are haunting questions.

But it is at this juncture that the gospel must either be embraced for what it is, or honestly rejected because you just can’t accept that type of “passive” valuation. But if you cannot feel God’s pleasure when you are hurting and helpless, can you really know God’s pleasure when you are at the height of success? I think not.

This is one of the most difficult parts of this journey with the voices of “you are worthless” haunting me from the left and the right. It is a real spiritual battle that you must engage in, moment by moment. Yet, like Tammy also concluded, it is better to have borne this battle than like the most who are never forced to either accept the gospel for what’s it worth, or just go on pretending that your value comes from the gospel when it really comes from those other things.

 

 

 

Ramblings: The Ethics of Suicide in the Presence of a Medical Crisis

I now have three books started, I’m talking about books that I’m writing. I have two books that I’m reading, Stones of Summer, and In the Beauty of the Lilies. Two of the books that I’m writing, Rock Harbor and Christiana Athena; The Girl with the Headaches, are both about done. I’m just editing them a bit. Now I’ve started another one of those deep, philosophical, nonfiction books, The Meta Enigma, and I will do a post about it in the next week or two.

But for us to like to write, you can’t leave a keyboard within reach, when we are idle. I’m idle a lot these days. I sit cockeyed on a dialysis chair trying to write books, and I look at my 8-9 other comrades in their chairs and they are either watching Fox News (a couple of them) or sleeping for the whole four hours.

As always, I have a constant whirlwind of philosophical thoughts going through my head. This is the way I’ve always been (even pre-cancer), however, now the idleness permits me to put these thoughts on paper as my Ramblings.

Image result for medical suicide

In my last Ramblings posting, I wrote about the ethical considerations of spending large amounts of money to keep someone alive. I was afraid—and proven correct—that some skimmers would immediately think I’m in some sorts of financial crisis now and am asking for money. Nothing could further from the truth. I have no idea how much this illness will cost us and our insurance, hopefully, will cover most of it. It was about the principle of the matter. Sometimes I do wish that people would either read these things carefully or not at all. But I am a self-confessed skimmer. But I say this because I’m getting ready to write another Ramblings that will certainly be misunderstood by some skimmers. I will say here, before I begin, that—no—I am not considering suicide right now. I’m only discussing the ethics of it.

I have known several people who have taken their own lives when faced with a major health crisis. I know of at least one (probably there were more) who did it because they were depressed about their health crisis, not because the crisis itself. For example, I knew a 38-year-old mother of a 12-year-old girl who had breast cancer. Her oncologist told me himself that it was an early breast cancer and very treatable. However, this lady refused all treatments. I argued with her and did everything I could to persuade her to get treatment, including recommending professional mental health help. Do you know what I would give for a treatable form of cancer instead of what I have? To be clear, many forms of breast cancer are as horrible as Multiple Myeloma when they are diagnosed, but hers was not! So, she committed suicide by cancer in the same way that any depressed person commits suicide by jumping off a bridge. It was because of her mental health, not her physical headache that she died.

When I was in my fourth day of intensive therapy at Peace Health in Bellingham, the day after my diagnosis of Multiple Myeloma, I had a young nurse suggest to me that suicide might be a decent option for me. I was blown away. I was groping for some hope at the time and she threw this idea up to me. I think—her being about 21-years-old—she saw no value in the life of a 63-year-old man, especially with a 63-year-old man with an incurable cancer.

There has been a lot of water under the bridge, since that encounter three weeks ago. I’ve had my nephrologist predict that my kidneys will come back, and my oncologist say—not predict—that I could have 10-symptoms-free years if the stem cell transplant works. Now, if you use your hope-infused imagination a lot, there is even a narrow path out of this medical nightmare. That path is where the stem cell transplant gives me 10 years and a cure is found within that time. That is very possible as they thought they had a cure in 2017, but it failed later. They are tweaking those things, plus working on at least 10 other approaches.

But what if my course is not so rosy? I don’t fear death as much as I fear suffering. I’m on a MM support group forum and I’ve watched, by FB postings, some really, hard-core suffering. I want to have the option for me to take my own life to avoid that suffering.

Then we come back to the present state. I will be honest and say that I’m suffering now. It is human nature to downplay suffering because we don’t want to sound like wimps and others want to report good news. For example (of the later) someone asked me, “Mike, how are you feeling?” To which I report, “I’m feeling a bit rough.” Then they say, “But you look great.” Then that person tells the next person, “I saw Mike and he looks and feels great.”

I have not felt great since Thanksgiving. Each day is a degree up or down on the not-so-great scale. While my doctors say that I’m tolerating Chemo much better than most, I still feel like, on those nights, I have the worst flu of my life.

I have many other physical complaints that I will not mention here for the fear of being cast as the constant complainer. I dream of a day when I feel normal and right now I can’t even imagine it.

But, back to the other question, I have to reflect on the course of treatment and when along that continuum of suffering and hope is taking my own life a real option?

I remember my philosophical hero, Francis Schaeffer, raising the ethical questions of abortion and physician-assisted suicide. He, rightly, was concerned about the de-valuing of human life at the beginning and toward the end. Then, he suddenly developed leukemia. He died in Rochester, Minnesota. He didn’t use physician-assisted suicide, but his wife Edith (she told me this herself as I moved to Rochester soon after this this) moved his bedroom set from Switzerland to Rochester, so that he could die in a familiar place.

I think that, not like the young nurse who saw no value in a man my age (Francis lived 10 years longer than my present age), there is a time when the path leads only to more suffering with no hope and then suicide is an ethical consideration. I have, however, pledged to my wife and kids that I will fight this as hard as I can, as long as there is hope. And for now, there is hope.

 

 

Ramblings: The Ethics and Economics of Days Lived

I remember, like it was yesterday, sitting around a table in a graduate course on medical ethics. We would have these scenarios presented, and then we would have to make an ethical decision on the best course, as an ethics panel. Many hospitals have such panels.

For example, on your floor you have; a) 25 year-old woman, prostitute and drug user with liver failure related to drug abuse, b) a 75 year-old retired banker, who is quite wealthy and in good health before a virus destroyed his liver, c) a 30 year-old mother of 2 who liver failed from a genetic flaw, but who has to insurance and no private means of payment. Then the hospital has one liver that matches all three. The one who gets it, lives, and the other two will certainly die. You can just imagine how hard these decisions are to make.

Image result for hospital medical ethics panel

Okay, I’m going to talk about money, but, before I get started on this thought, please know that this is not some type of set up where I end up discussing financial needs and a “Go Fund Me” account. There is no hidden agenda here. I have no plans to do that. I have no idea what my health care bills is going to cost us, and how much the insurance will cover. My out-of-pocket costs is not supposed to be more than $2,000 year, but insurance companies have a way around that.

So, I have received our basic bill from my hospital stay. This bill does not cover many procedures or physicians’ bills for their services. That bill is $135,000. We will see how much the insurance company is going to pay.

On top of that are several other visits to ER and physicians’ offices, not to count dialysis three times a week. I have no idea how much dialysis cost, but it would surprise me if it was $500-$1000 each time.

We are looking ahead to the treatment that will have the best chance of saving my life for a number of years, stem cell transplant. There is no cure, but this could buy up to 5-20 years, before it will eventually fail. The cost of doing the stem cell transplant, will probably approach $500,000. Now one has to stop and think about, is my life work that much?  It is very hard to put a price on someone’s’ life or years of life. It is very hard to put a price on your own life.

When you step back and look at the money, it is true that you could take that same amount and save the lives of 1,000 kids in Yemen, who are starving from the war. Or, save the lives of hundreds of people who have things like malaria.

Image result for hospital ethics panel

It is not that easy just to take the money and switch it to such a noble cause. I mean, if we were paying the amount, out-of-pocket (and we couldn’t do that) you could re-designate the money to those more noble causes.

If I were alone, no wife, no kids, refusing treatment and sending the equal amount of money, or putting something like the work in Yemen in my will, that would be a good option for me. But I’ve promised my family that I would fight this disease with all I have, and that includes my (and the insurance company’s) money.

When you look at the real picture, either you spend the insurance company’s money to extend your life, or the money remains in the insurance company’s coffers, allowing them to pay their CEO (many who get 50-90 million dollars per year in salary and stock options) more and their stock holders more. So, if I do not get the treatment done, they buy yet another vacation home or Lamborghini.

I do feel some guilt and the guilt will worsen if I start to deplete our savings, leaving Denise in a more precarious retirement situation.

But these things are not easy to figure out. How do you put a price on your life or the years added to your life? These are the thoughts going through my head today. They are often questions that people never talk about, but are real.  Mike

UPDATE: 2/12/19

Okay, I will organize this as the Good, The Bad, and the Ugly.

The Good:

  • I just started my second round of chemo yesterday. It went without a hitch, no side effects (so far).
  • I met with my oncologist today. My IgA Free Lambda Light Chain (the type of protein my Multiple Myeloma is over-producing) has now dropped from 2658.9 down to 246.3 mg/liter of blood. A normal person will have 0-25 mg/liter of blood. My change reflects a 92% drop over 4 weeks. Anything that is > 90% is consider remission. However, what we don’t know is if this drop is from 5 rounds of plasmapheresis (which rapidly removes bad protein) or from the chemo. It will take one more round of chemo to know. If the level drops more or plateaus, then we know the chemo is working. If the level shoots back up, then we are in trouble because the chemo is not working, and the kidneys and other organs will be damaged. We would have to switch chemo at that time. The ultimate goal is to get the level as down as far as possible, maybe even to the normal 0-25 mg/liter range. When it bottoms out and plateaus, then I go to the University of Washington’s Stem-cell transplant program. Usually it takes at least 4 rounds of chemo, each round being 4 weeks. So, you can figure that a stem cell transplant would come around mid-May. I would have to be in or near the hospital for 4 weeks.
  • My neurological symptoms, from my renal failure, are diminishing daily, inch by inch and not soon enough.
  • My bad headache, which came on for reasons only God knows, suddenly went away two days ago. Was it answered prayer, something changed in my head? I don’t know. I just wish I could bottle up that cure for my patients. My neck pain is much better too, thank you.
  • I have tentatively scheduled myself to go back to work later this month, in a very part-time capacity.
  • Each day I am feeling stronger, today doing my longest hike, in the snow, of 2 miles.
  • Denise is doing better. She is getting back to work more and more. I wanted to start taking myself to dialysis to free  her up. I had to drive (with her with me) twice this week during a snowstorm, so I think I’m ready to do the trip solo. She is resting well and I’m trying to do more and more house work to allow her to rest in the evening.

 

The Bad:

  • It would be a huge benefit if my kidneys came back. I know many people have been praying for this from day one. Thank you! We cut back on the dialysis by 30 minutes. So far, my own, natural kidneys are NOT keeping up as the toxins have been rising. So, the rumors that I’ve started, that my kidneys are better may have been premature. But I’m still peeing like a racehorse, so that is a good sign. Acute renal failure is the time between first failure and 90 days. I’m now at 30 days. If the kidneys do not recover by day 90, it is considered end-stage renal failure and puts me in a far graver condition. Please keep praying.
  • I still have the unexplained sinus tachycardia (heart rate over 100 beats per minute). It limits my endurance as my heart rate and blood pressure get so high when I exert myself. None of my doctors have a clue as to why except for a possible connection to my kidney injury. It is a prayer concern that it is not due to direct damage to the heart from all of this and that it goes away.

The Ugly:

My tubes. I hate them!

Ugly

 

 

 

Ramblings: Calamity- Ineptness, An Observation (or, “Mike, I don’t Know What to Say)

In an attempt to clarify that this not intended as a criticism, but a simple observation, I will start with my own story of my mistake. I do have new insights, however, now that I’m on the other side.

 

One of the top five mistakes of my life, okay (thinking now, that there were so many) maybe the top ten, happened when I was a freshman in college. I had this good friend, maybe my best friend, who was a girl I will call “D.”  Now, she wasn’t a girlfriend because I had just become part of a Christian group called the Navigators who forbade dating. Now, present day Navigators would take offense at that stereotype, but it was true. When I joined, I had a girlfriend “S,” and the Navigator leader rode me hard, telling me how bad that was, until I broke up with her. I knew that if I started dating again, I would quickly be pushed out of the group. So, yes, they forbade dating through powerful social coercion.

I used to go to “D’s” house every Sunday night. She was sill in high school. We had a wonderful time (and as I tried to clarify above it was strictly a platonic relationship). I’m not sure of “D’s” motive, but I will say I was probably her best friend as well. “D” had a younger sister, I think by just one or two years, who was very close to her. They behaved almost like twins. Her sister, “A,” therefore seemed like a close friend of mine too.

I will never forget coming home one Christmas holiday from college and my aunt, who ran the beauty shop in town called me on our landline (the only type of phone in those days). She broke the terrible news that “A” had just been killed in a tragic accident that morning. I was devastated. I wasn’t sure what to do. I felt (dimly) what “D” must have been going through. I didn’t call her because I understood that the whole family was in crisis mode and they didn’t need non-family members calling or getting involved at this acute point.

Footnote: Now, I debated in my mind if I should go into a more detail of the story (below) and I decided I would. This detail is true, it adds depth and clarity and certainly adds more interesting drama.

One of the Navigator guys, I will call “G,” was trying very hard to be my friend at the time. He was always showing up on my doorstep, unannounced. He also did strange things like scheduling to take the same classes as me. He also was constantly running interference if I tried to talk to a girl. He was key in my decision to break up with “S” and helped me to do that. I was too naïve at the time to understand that “G” was a closeted homosexual and was infatuated with me. I’m telling you this candid part because it is a key part of this story and it is absolutely true (later events would prove that hunch).

About this time, as usual and without warning, “G” showed up at my house. I was still numb. He voiced his strong opinion that “D” needed her space and I should not bother her with a phone call.

After a couple of days, the announcements were made about the services for “A.” I was prepared to go to the funeral home that night for the open part of the service and reception with the family. There, I thought I would hug “D” and hang out with her, if that was what she wanted. I wanted to be there for her in any way I could. But I didn’t know what to say and that worried me.

To my surprise, again, “G” showed up at my house that afternoon. When I told him about the service, he told me that God had laid on his heart the need of a college guy (we both knew) whose car had broken down in Knoxville (90 miles away) and needed a ride to Sweetwater (150 miles away) that night. He also told me that God has laid on his heart that He (meaning God) wanted me to go with him. I voiced my opposition and how I needed to go to the funeral home.

“G” was a very intelligent and articulate. He voiced strongly how wrong it would be for me to interfere with “D’s” grieving process, amid this personal calamity and I should give her space, and that I should obey God and come with him. We all used the “God card” to manipulate each other into doing what we wanted.

I have no excuses as I fell for “G’s” plot to interfere with my relationship with “D.” I was young, still 19, and immature. I didn’t have any social clue as how to respond to someone amid a calamity, how to behave and what to say. I’m very sorry to say that I never spoke to or saw “D” again and that was 42 years ago. I can’t imagine how abandon she must have felt.

 

I am now in the midst of a personal calamity like I’ve never known before. I don’t know if I’m going to survive this. It has been very interesting how people have responded. On the good side, and the vast major of this story has been good, I’ve been humble by the amount of people who have showed up to help and to contact me. During the early days, more than 650 people quickly signed up on my blog. A lot of them I knew, many were from my past, and many were complete strangers. They not only signed up to read my blog, but they engaged with me in “conversations” via texts, comments, or private e-mails. I had two old bosses hear about me and showed up at the hospital to see me. They didn’t have to do that. Even my brother, who I have never been close to, started calling me. He, oddly, is suffering from a condition that is like my own.

But I’ve also noticed a group of people within my sphere of close friends and family who suddenly disappeared. Not one word. Nothing but crickets. Some of them have surprised me. I have also observed how some tertiary friends (baristas, people I know in town but not as personal friends) are treating me very differently know that they know. They avoid eye contact and conversations.

Now I don’t blame people because, the purpose of me telling my long story above, is that I’ve been there. There is a social awkwardness of “What if I say the wrong thing?” That’s what I worried about when I never called “D” during her crisis. Then one “Online friend” that I know through a professional website said, “Mike, I don’t know what to say?”

So now I’m on this side, let me be clear. No one can say the “wrong thing” no matter what you say, unless you, foolishly, try to blame me for this. For example, “Mike, you should have taken better care of yourself.” Yeah, that would piss me off. Or from my Christian friends, “Mike, if you only trusted God better or prayed harder, or believed in faith, this would never have happened, or you would have been healed.” That would also piss me off, very, very much.

But beyond those stupid things, I can’t think of any other “wrong thing to say.”  I answered the friend from the online professional web site by saying, “Just say, ‘Mike, that sucks.’”  That’s good enough for me. Then relate to me the way you always have. Beneath these layers of cancer and renal failure, tubes sticking out of my chest, and pills I have to take, there is still the same ole Mike. He’s not depressed. He’s not cynical, he’s not dangerous. He won’t be offended. It is the same guy, but with a disease that sucks.  Mike

 

 

 

 

 

 

UPDATE: 2/9/10

I was waiting to give an update when everything was rosy, but that was a mistake. In this battle (if you ask anyone battling cancer), if anything is rosy, it is quickly guarded by issues in the other direction. I will give bullet point updates for the casual reader details for family and friends who want to know those things.

  • Yes, I am still on dialysis. The rumors I am off was only wishful thinking. I will be on it for at least one more month and, if there is not enough improvement in my kidneys, for life. My kidneys were perfect before the cancer took them out in December. My kidneys are improving.
  • I’ve completed my first round of chemo (start my next on Monday). The load of my bad protein has gone down from 3600 to 240. Normal people don’t have more than 26 (MG per liter of blood). So, we are heading in the right direction but have not arrived at our goal of normal. I don’t know if I’m “on schedule” or how I compare to other patients until I see my oncologist on Tuesday.
  • How do I feel? It depends on the day and the time of day. If I only had the cancer and not the renal failure, I would feel close to normal, except for the chemo days, when I have something that is like a bad case of the stomach flu.
  • My symptoms from the renal failure are my worst problem. I still have neurological symptoms from living a month with toxins in my blood that would have been lethal for most people (BUN 125, Creatinine 11.5, Potassium 6.9). Those symptoms are twitching, jerking of muscles, slow gut, and others. They are very slowing getting better. My toxins in my blood are almost normal now thanks to my own kidneys plus dialysis. But this can take time.
  • I have new symptoms that are impacting my quality of life and these include tachycardia (105-125 resting), a constant headache that waxes and wanes between a 2/10-7/10, a cough that comes for a day and then goes away (and when I cough it sends my headache into orbit), and hypertension that comes and goes. I’ve discussed all of these with my doctors and no one has a clue what is behind them unless it is more symptoms associated with the renal failure or chemo or Myeloma or who the hell knows. I just want them to go away and no new symptoms to come. That would be profoundly helpful as I have enough on my plate.
  • I have tentatively scheduled myself to go back to work PT on the 20th. Much of the problem is working around dialysis three days a week and chemo two days per week. That leaves one day (Thursday is an overlap day for chemo and dialysis) per week to work right now.
  • Denise is back at work about 60% and is getting caught up. She is resting well but of course all of this weighs on her.

 

Details:

My back story doesn’t add much else as my bullet points were quite comprehensive.  My spirit flows with how I feel physically. I am feeling stronger every day. I hiked a mile with Greta yesterday along the Tommy Thompson trail, in the snow. When I do a lot, house chores, hike, in town and etc., I often crash and feel terrible by 7 PM. I get cranky if Denise ask me to do things because I am so tired.

The plan is not clear yet. If my oncologist is happy with my numbers, we will continue the same treatment plan for at least two more rounds and then go to Seattle for evaluation for stem cell transplant.  I am a little worried about this tachycardia. I had a very healthy heart 4 weeks ago. If something is wrong with my heart, it could influence future treatments. My EKG is fine but there is no explanation.

I’ve talked to people with my exact same story and they pulled out of it, kidneys came back, stem cell worked and now 8-15 years later they are going strong. That’s the path I want to focus on.

I think Denise is doing well now that she is sleeping. I want her to get back into her exercise program. I want to drive myself to dialysis to free her up more to do her stuff.

Regarding my kidneys, One study showed that 12 in 16 who started like me, have fully recovered kidneys. Another study (not exactly the same) says on 5% recovery. Keep praying for them.

Mike

 

Ramblings: A Coerced Cause

You can call it cause, calling, or life purpose. Some would expand the concept to proverbial philosophical question about the meaning of life. Sometimes your calling or purpose is clear, sometimes it is ambiguous. Many people struggle with the question of their purpose for years or decades. Some for their entire life.

A month ago, I was wrestling with my own idea of purpose for my retirement years. My heart was in refugees, especially those from Arabic-speaking countries. I felt that I was entering a new season of life where the cause would be more ambiguous. Now, that dream must be suspended but my cause has never been clearer.

Previously, during my professional career, I had seen my purpose of fighting the suffering of headaches. Headache disorders are part of the great darkness the grips humanity. That has been one of my great causes for the past 35 years.

There are times and situations that coerce you into a cause. While that calling is not by choice, it does give clarity to one’s life’s journey.

One of those situations is when you have children. As a parent, your previous primary purpose suddenly becomes relegated beneath the new primary purpose of raising those children to be safe, happy, and to be a positive influence on the world.

Many moons ago, when I was part of an evangelical group, they had this view that God has a specific “calling” for each of our lives and it was our responsibility to find that cause. It was often suggested, directly, or implied, that if you don’t find that cause, God would kill you. Seriously. The terms they used were that you could have an accident or cancer. The point is, if you are not working toward this grand purpose, God has no use for you on this planet and would “call you home.” Once that cause was found, it superseded all else. It was more important than the cause of raising your children (mentioned above) or for our spouses. My very last big study (took months to complete) when I was in a Navigator (nondenominational Christian organization) training center was “Seeking God’s Calling for My Life.” There was profound pressure that we become missionaries. I think five of us in the training center (out of about 7 guys) went to the mission field. I determined that my calling was to Muslims in the Middle East.

The architype of this type of calling or cause was the father of the modern missionary movement, William Carey. He felt called to convert India to Christianity and went out from England with his wife, Dorthy, who did not want to go and did not feel so called. The times in India were harsh. They lost three young children to different causes and his wife then, literally, went insane. Read more here: (https://www.christianitytoday.com/history/issues/issue-36/william-careys-less-than-perfect-family-life.html). Yet, William Carey would not give up and became a missionary hero (after sending his wife home to England to die in an insane asylum).

Yes, I found my “calling” to be a missionary to Muslims, with the life goal of converting them to Christianity. Like our group emphasized, this calling had to over-rule everything else. I’m tempted to go down the rabbit hole of why that was so wrong, but I will let it go as not to make this post too long. But I will say, we came home from the mission field due to the suffering of my children (after I had a major break from evangelisms).

When one is given the diagnosis of incurable cancer, suddenly fighting that cancer becomes the new calling or cause. It is not a cause of choice, but you suddenly become conscripted into this ferocious war. The only choice that you have, is check out, by letting the cancer take you out or taking your own life.

If I were single, with no kids or living parents, taking my own life would be a reasonable choice, rather than taking this long, painful and expensive journey. It will cost a million dollars to tame this beast inside of me. Don’t worry, taking my own is not on my radar unless the suffering becomes unbearable. I did have a young nurse in the hospital three weeks ago suggested that I might want to consider suicide rather than starting this fight. I was profoundly shocked at her suggestion. I sense that in her youth, maybe 22, that I she saw me as too old to be salvageable.

Image result for frodo with a sword

So, for all practical purposes, I have no choice in this fight. I am not brave as to choose to take this journey. I am anxious little Frodo Baggins, swept up in a war with the Dark Lord Sauron or with the Orcs. I have nothing but a short little sword (thank goodness Orcs are easily killed) and a magic ring.

Now, with great clarity, I am called to this war and that automatically supersedes all else. But here is how I see this cause. Cancer is part of the darkness in this world. In my view, this universe that we live in, is about 90% glorious and spectacular. I love it! But about 10% is horrid and terrible. Evil is real. The horrid is the Christian concept of the “Fall.” Pantheism tries to explain evil in other ways. The atheist has no explanation because there is no difference between good and evil in that paradigm (as I said in another post, I respect the atheist because I almost ended up there, but I cut them no slack in their denial of nihilism).

The purpose of this fight is to survive. It is to conquer. It is to live against the odds and against the purpose of the cancer to kill me. Cancer loses when we live.

I do not live in denial. I know that death is a card on the table. During my first five days of this disease, it looked like death was the ONLY card on the table. It seemed, (my biased impression) that the only thing that people in the hospital wanted to talk to me about was preparing for death. I planned my funeral. I said what I had to say to my kids and wife. I finally asked people—when they kept asking me if I had thought about death—that death as the ONLY thing I as thinking of, but can’t we have some hope? This process was very, very sad.

But having the death card on the table is not unique to me. Everyone has that card on the table, but they often don’t make eye contact with it. None of us get out of this universe without death. Death can appear out of the blue in the form of terrible diseases or accidents to anyone. In m MM support online support group are people in their twenties with this horrible disease.

I had a Christian friend, in college, who had an inoperable brain tumor. He as one of the greatest people I had ever met. He felt like his calling, with his disease, was to die well. What he meant, was to die as a good Christian. He wanted to face death without fear and full of faith. He wanted to sing hymns, praising God up until his last breath. Sorry, if someone expects that from me, I will greatly disappoint them.

I will never judge how someone else deals with cancer and death. But I will compare it to the way I deal with it.

I have no desire to go out as a good Christian, for the same reason I don’t watch Hallmark movies. I prefer to live in reality. My pastor once said, during a children’s story, that some people see Heaven as a land of rainbows and unicorns. I almost shouted out, as in impulse, “That sounds more like hell.” Because I love this material universe so very much, I will go out with my claws dug deeply within the dirt, hanging on until the last breath. I will fight this beast of cancer with both tooth and nail.

Many Christians think that we should be Heavenly-minded from day one. That it should be our desire to leave this horrible universe and go to Heaven where the streets are paved with gold and we have wings. Sorry, I don’t ascribe to that interpretation. I ascribe to the idea (see N.T Wright’s book, Surprised by Hope: Rethinking Heaven, the Resurrection, and the Mission of the Church) that this universe is wonderful, and that God’s intention is that we are part of this universe now and forever. That God is clear in plan to repair this universe (fix the 10% of evil) and fix our bodies to live here forever. Somehow, and it is a mystery, that we step back into this wonderful, repaired universe, with new bodies the moment we die. Jesus did say to the thief on the cross that I will see you in the great garden (paradise, as used here, was a Persian word that means great garden) TODAY.

To step gently around another rabbit hole, I will point out that the reason that the earth=bad, Heaven=good, mentality of most Christians is that the Church, unfortunately, adopted the Greek notion of Platonic Dualism in their metaphysical view of the universe. Within that paradigm, this dirty earth is 90% horrible and therefore we should be eager to get out of this shithole place and into the mystical Heaven. Okay, look up those terms (okay not shithole) if you want to go down that rabbit hole on your own (or read my book Butterflies in the Belfry as I go into much detail about this).

A physician friend of mine also declared that he wanted to die well. He had a terminal blood cancer, which had fought for years. However, at the end, he planned everything, down to the smallest detail. He died as a noble physician. If you expect that from me, I will disappoint you.

So, I must don my skimpy armor and pick up my sword and shied and march into hell to give all I have to kick cancer in the balls and to cut its nasty heart out, not because I have courage but because I have no choice. This is now my determined cause. I pray that I prevail. If chemo and then stem cell transplant works, I can live 10 years. Within 10 years, a new cure may appear. That is my hope. Mike