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Mini-Mini UPDATE: 4/20/19

I just wanted to post, out of excitement, that my renal function has started to improve again (if one lab draw counts) after being at a plateau for three weeks. See the latest graph below. Again, this is an algorithm that I’ve created, which captures the rise of one toxin, creatinine, per hour with a relationship to the number of hours I spend in dialysis. You don’t have to understand the math, except that the closer the number gets the zero, the sooner I can get off of dialysis.

I hate having the catheters in my chest on the right. I just found out yesterday that in two weeks I must also get catheters in my chest on the left for the stem-cell transplant. Those will be in for 10 weeks. But it would be glorious to have both sides removed about the same time and I be set free from this tether.

 

Creatinine Graph 4-20-19

Mini-UPDATE: Follow up for “How Long am I Going to Live?”

I came across a study today, which was published a few weeks ago and clarifies this with even more recent information. This is more important, now that I am scheduled with Stem Cell transplant.

MM, without stem cell transplant and chemotherapy, the median life expectancy is 50 months from diagnosis.

MM with stem cell transplant, and reduced chemotherapy, life expectancy is 70 months from diagnosis.

More adverse reactions in group 1 and more complications.

So, I think stem cell transplantation is the right choice.

UPDATE:4/17/19

I just got off the phone with the Seattle Cancer Care Alliance. I have been pre-approved to enter their stem-cell transplant program starting in two weeks. I will enter the program on May 1st. On that day, they will start the process of harvesting my own stem-stem cells. For the next few weeks my own, defective, bone marrow will be burned out with high dose chemotherapy. Then, my stem-cells will be re-infused. Following this, I will have a few weeks for my immune system to recover. Hopefully, I will be discharged on August 9th. I will either be an in-patient at the University of Washington or having to live nearby for daily appointments during this entire 100-day period.

Stem cell transplant, while having its own dangers (considering my own brother has been seriously ill for the past month, in ICU, as he had a bad out-come from the process), if I follow the statistics, I could have 7 years + of cancer “free” (not cured but controlled) living. During this time, I’m quite confident that a cure for this awful disease will be found.

Thanks for your prayers. I still need my kidneys to recover as well as my neurological problems, associated with my renal failure.

Mike

 

RAMBLING/UPDATE: How Long am I Going to Live? (The unabridged Version)

Introduction

Okay, the reason I’m writing so soon isn’t that I have major news to report, but in response to a question I have been asked many times in the past few days. The question is not asked in the form the title here reflects, but usually more like, “Mike, you’re going to beat this thing, aren’t you?”

Now I realize that most of the people who ask this question, do so with the best intentions. They really want me to beat this thing and their question is like them cheering me on. Sometimes it is because they want factual information (for their own reassurance that I will get well again). A few people ask this question simply because they don’t know what else to say and are just making small talk (and are not really interested in explanations).

Then there are those people who come here, like my children and other family members, who are afraid to ask this question, but are really wanting to know.

Reader Beware

I can never explain my situation, accurately, in one or two sentences while standing in line at a coffee shop or in a church vestibule. I can never judge how serious the person asking the question really is, so I don’t know how much to say.

I will try to accurately answer that question here. If you are interested in details, continue reading because there will be many. As I mentioned, it is a complex story without a clear answer. The other issue, and I’m serous, is that I just started a new round of chemotherapy and I’m very high on steroids ( and it is after midnight and I’m exhausted after a busy day but don’t feel like sleeping). I’ve talked Denise’s ear off today (I think she was about to sink to the bottom of the hot tub to escape me). I may have the tendency to be long-fingered (like long-winded is to talking) as I type.

The Limitations

First a caveat. I have read almost every study published on Multiple Myeloma (MM), Renal failure associated with MM, and treatment outcomes. I’m sure I’ve missed a few (that I keep discovering) but not many. The blaring thing that is missing is a consensus on survivability of MM and specifically, MM with associated renal failure.

Another couple of points that I must repeat again are, 1) MM has no cure. No person in the world has been recorded as being cured by medical science or any kind of miracle, 3) MM is really at least five very different types of cancer and outcomes are determined on which type you have, and 3) I do not know if my kidney function will ever come back to the point that I will not need dialysis and this may have a bearing on what treatments are offered and outcome.

I first found figures in places like the American Cancer Society, which were very disheartening. They place my survival ability as 8 months to 3 years. I accepted these numbers at first, but with further reading, it became clear that these numbers were based on the state of treatment about 10-20 years ago. The treatment of all cancers is advancing rapidly, more-so for MM. Just in 2017 they thought they had a cure (CAR-T) for MM. But then, at the two-year mark past treatment, the majority reverted back to cancer. Since then, there have been about ten new treatments that have either made it to the market or are in pre-marketing clinical trials.

To know if something is really successful, or even a cure, it takes at least a decade of observation to figure this out. Most of these treatments have been out of the lab and into treatment for only 2-3 years. Also, we are understanding MM much better and why it eventually outsmarts treatments. Adjustments are being made to future treatment concepts based on what has been learned.

With this said, what do we know? Acting like a TV show cutting away to a commercial, I must first break away and talk about my renal failure, because it plays a role in my survivability.

Renal Status

I don’t know if I have ever prayed for anything as much as for my kidneys to return. Again, as it can be confusing, I will explain that I do not have cancer in my kidneys and my MM has not “metastasized” to my kidneys, but the protein produced my MM has plugged up my kidneys.

I do have some new data as of today. I will explain (as graphed below) my kidneys had a gradual improvement but have plateaued over the past 3 weeks. If my tears could have brought my kidneys back, they would be in excellent shape. This graph (as shared last time but expanded with today’s numbers) shows how much one toxin, creatinine, accumulates in my blood per hour. It MUST be zero for me to get off dialysis. What today’s numbers do not reflex is that another toxin, called BUN, did drop by 10 points.

 

Creatinine Per Hour Graph

My Survivability

There’s more caveats and I will list them as bullet statements to speed up this writing:

  • Of course, no one knows their future. I could be killed in a car wreck tomorrow, driving to dialysis (especially considering how little sleep I will get tonight while on steroids). None of us know.
  • Having MM and renal failure is very unpredictable. While I was feeling quite good last week, being off chemotherapy, I could have a serious complication at any moment. As I will explain about treatments, I could also be a great responder, which will greatly enhance my ability to survive.
  • I will always accept a miracle, although there has never been reported a miraculous cure for MM anywhere in the world. If you know of one, let me know and I will go visit them.
  • One of the best long-term studies has found that having renal failure does not decrease a MM patient’s survivability. However, insurance companies will often reject stem cell transplant (SCT) for renal failure patients because some doctor within their company, who knows nothing about MM (but who wants to save the company a lot of money), has figured that a renal failure patient is not worth the investment of $500,000, assuming they will not live very long.

I must talk about the two treatment pathways. One is continuing chemotherapy for the rest of my life. The other is doing the SCT, using my own-harvested stem cells. Some people, with my particular MM, choose not to do SCT for a variety of reasons (for one it is dangerous, where almost 5% do not survive the treatment, as my own brother almost died form it a few weeks ago). The main takeaway from the many studies I’ve read (and there is not a consensus) having a SCT may double your life expectancy.

I have chosen to pursue SCT for one main reason. If I don’t, I will have—on average—3.5 years to live. There will not be a cure on the market by then. If I can live—on average—7 years, there will most likely be a cure. If I survive until a cure is available, it is even possible, that I could get off all my drugs and return to an almost normal life.

First, I must be approved by the transplant team. Some will not accept those on dialysis. The earlier you do SCT, the better it works. The protocol is 4 rounds of chemo, then transplant. My referral to the SCT team at U of Washington has been lost for a month. This is very frustrating. I just started my 5th round of chemo because of this error. I called U of Washington today (and getting voice mails) trying to find out where the hell my referral went. I don’t think it ever left Anacortes.

This study graph below, sums up this whole post. However, I will have to explain. On the graph on the left (marked PFS) shows how many years a SCT patient will be symptom free (doesn’t count for symptoms from renal failure like I have) for three different groups, based on the initial response to the treatment (the best predictive factor). The blue line is for patients who obtain complete remission (no evidence of cancer) right away from the SCT. The red line represents those who have a partial remission from SCT. I have had a partial remission now from my chemo (however my chemo will eventually fail and sooner than SCT). The gold line is for those who have had a minimal or no response.

The second graph (marked OS) shows years of survival, using the same color code. This study was completed in 2011. I have yet to find a good study that is more recent than that, but maybe my transplant team will have newer data. But you see, these numbers look much better than those quoted by the antedated American Cancer Society numbers. I’m glad I know how to read studies. This gives me some hope. So, if 37% live 20 years, that puts me past the normal life expectancy. But some die before 1 year after SCT. I know of patients who died during SCT and some who have died within a couple of months.

MM Survivability

Last Thoughts: The biggest risks for my life being cut very short is an unexpected complication (because the chemo suppresses our immune system so much, I have known several patients in my online support group who have died from pneumonia) and, to be honest, I have had some thoughts of ending my own life. Not now, but if my day to day symptoms get worse. I have the constant neurological symptoms (although for some reason only God knows, were minimal today) and the three weeks per month that I’m doing chemo I feel like I have a very bad stomach flu. It is hard to function, and I get very discouraged. Being tethered to a dialysis machine doesn’t help matters.

I am sorry again for any typos. It is 1 AM and I’ve had a very rough day with me trying to see patients for the morning and doing chemo at the same time. The plan was to be home by 1 PM to rest but due to more things to do at work than I expected and then having car trouble (I left the lights on in my new sports car this morning and spent a hour trying to figure out how to get to the battery, which to my shock was beneath the trunk with the spare tire). I have to get up in a few hours to drive to Oak Harbor to endure another dialysis session.  Mike

Mike

UPDATE:4/12/19 Part II

Okay, nothing new here (since the 4/12/19 post), just more (much more) details for those who are interested. This is intended to give the “background story” and to answer some of the questions I’ve been asked.

Chemotherapy is Working!

Once again I will explain that my cancer (Multiple Myeloma) is a cancer of the part of the bone marrow that makes proteins. Of the many proteins produced, I have a very specific flaw in just one. It is called the IgG Lambda Light Chain. Because my bone marrow started to spew out huge amounts of this protein, probably sometime in September or October (I was completely unaware) it filled my kidneys and caused them to fail. There is no cancer in my kidneys, but simply they could not handle the volume of protein that my cancer cells (in the plasma) was producing. A normal person would have less than 24 mg of this protein per liter of blood. When I was diagnosed, I had 2658 mg of this protein per liter. The kidneys can handle the 24 mgs or less. We don’t know how much protein starts to do damage, so the goal is trying to get the protein as low as possible.

The graph below shows how my protein levels have been dropping through plasma exchange in January (where the part of my blood that has the protein is removed and replaced with an artificial plasma products), and through chemotherapy. So, in conclusion, we know the chemo is working. If it was not working, I would be in big trouble.

We will continue chemo until we get the lowest level we can, and until I can do something that has a better long-term outcome such as a stem cell transplant.

Lambda Light Chain Graph

What is My Chemo Program?

The chemotherapy that I am doing is standard for my disease and with someone in renal failure. I take pills of dexamethasone (a steroid) at 40 MG on Mondays. No one knows how this large dose of steroids work in Multiple Myeloma, but it seems to make the other chemo drugs work better. I also take a chemo drug called Cytoxan on Mondays. This drug stops the rapid cell division which is seen in most cancers. Then on Mondays and Thursdays I have an injection of a Multiple Myeloma-specific chemo called  Velcade. Velcade is very expensive (I think $3-4,000 per injection) and the most important chemo drug. It works in a complex way where it caused the bad protein to build up inside the cancer cell (it blocks and enzyme which the cell uses to break down the protein) so the cancer cell fills with the protein until it literally ruptures and dies.

Since February, the side effects of the chemo were getting worse and worse. I was doing okay on Monday when I did three drugs. But when I did Velcade alone on Thursday, I would have a severe flu-like reaction. The problem was, this flu went from lasting to one day to lasting a week, crossing into my next treatment, so I always felt bad.

My oncologist suggested that I take the dexamethasone again on Thursdays. He wanted me to take 40 MG (which would guarantee that I would not sleep for 2 days). I decided to take 20 MGs . . . and it worked! I have had only minimal side effects for the last two rounds of chemo with this program.

My Kidneys are Improving but Very Slowly

About 30% of Multiple Myeloma patients start out like me by having no symptoms until their kidneys fail. Of those who kidneys fail, somewhere (depending on the study you look at) between 30% and 80% eventually regain enough kidney function to get off dialysis.  For those who kidneys don’t recover, the prognosis is grim with a much lower life-expectancy (sometime months). I would not be a candidate for a kidney transplant because I have cancer. I may not be a candidate for stem cell transplant because I have renal failure. A stem cell transplant (where they harvest my own stem cells, burn out all my bone marrow and give me back my stem cells, which create new, mostly healthy bone marrow) could give me ten years of life.

So, it is an understatement to say that getting my renal function back is important. I have prayed my heart out over this and had many crying sessions when they have not improved as much as I wanted. I also hate having this painful tube in my chest and spending the hours on a dialysis machine each week.

My kidneys are doing fine managing my fluids (I pee like a racehorse and have no swelling). My own kidneys also are doing a pretty good job in managing my electrolytes. If I ate a large amount of potassium (4 + bananas) or calcium (5+ Tums) those electrolytes will get too high (a normal set of kidneys would handle that easily). So, I do have to watch my diet, but not too carefully. However, what my kidneys are not doing well is filtering out waste products such as creatinine. For that reason I must be on dialysis to survive.

One night, when I was high on my steroids, I spent several hours going back through my fourteen renal function tests. I looked at the rise of creatinine between dialysis sessions. Immediately after dialysis my creatinine gets down to 2 mg per 100 ml of blood. Normal is below 1.2 mg per 100 ml of blood. But my creatinine rises during the hours that my kidneys are functioning on their own. In order to get off dialysis, there can be no rise in the toxin when my kidneys are function on their own.

I went back over two and a half months and counted the hours between my previous dialysis and my lab draws to check my kidney function. I was able to crate a algorithm that shows precisely where I am at and where I need to be (which is 0 ). Below is the table to show this trend. You will see a slow drop, but then a plateau over the past two weeks. I will update this graph as I have more lab tests. Ignore the numbers to the left. It is not “creatinine level” but an algorithm, which I created and understand.

Grap of Kidney Function

Please keep praying for my kidneys to recover. I will accept a miracle or just a natural improvement. It would mean so much to have my kidneys again.

My Neurological Symptoms are Driving me Crazy!

The only symptom I had before I was diagnosed was neurological. These symptoms, were assumed to be caused by living in renal failure for some period of time. Sometime in December I started to have muscle twitches. I have had them before, but these started to get worse. I had several twitches going on almost all the time. The twitches were so bad that I started to assume I had ALS. I made an appointment with my doctor to discuss these and a new, unexplained nerve root pain from my neck  and down my right arm. He did, rightly so, focus on the neck pain and when I went to get a CT of my neck, I had to get labs. This was on January 11th. The labs showed that I was in serious shape with renal failure and electrolytes through the roof. This started the events that led to going to ICU and eventual  the diagnosis of Multiple Myeloma.

But during this time in the hospital, and after dialysis, these twitches slightly improved. My kidney doctor assumed that these symptoms were from my renal failure, which are common, but usually not this severe. I assumed that they would go away once I got the toxins down in my blood through dialysis. They have not. After some initial improvement, they have not changed.

So now, I have 2-3 places twitching all the time, on a good day. On a bad day, I have 10+. It is from my tongue down to the arches in my feet. It is driving me crazy! It is hard to sleep. Also, if I cough or sneeze, I instantly have 20+ areas of my abdomen twitching or go into a full spasm that last up to 1 minute. If I go from squatting to standing, the same thing happens in my pelvis area. No, this is not painful (except for the full cramps), but I am so disappointed that this is not getting better.

I’ve spoken to my kidney doctor, my cancer doctor, and a neurologist. They each shrug their shoulders as having never seen twitching this so bad in renal disease. They have no solutions. I have read every study in the world that talks about neurological symptoms of renal failure. Per the suggestion of one study, I did start gabapentin to see if it would  help. The first day went great but then, since then, it is not so clear.

I pray constantly that this would go away. I fear it will get worse and if it does, I will be tempted to blow my brains out. Not really. No, I would probably use pills.

The Future

I am disappointed that my referral to a Multiple Myeloma specialist at the University of Washington was lost by my doctor and after two months my future is still not clear. This, and the fact that each time I go to get labs and the lab orders are wrong, is very frustrating. If having cancer is not bad enough, having to constantly watch the orders for labs, referrals, and even the chemo (all of which have been wrong) is daunting. I cannot imagine how a non-medical person would navigate this maze. They would not know that a red and purple top tube are not the right tubes to measure the cancer protein in your blood, or that an IV chemo drug was not done, and should have been.

But before I digress more, I will say that we now have a referral sent to UW, but have not heard back from them. There, the Multiple Myeloma specialist will make sure that I’m on the right program and will start the evaluation for a stem cell transplant. My future will be in their hand.

Our Great Trip

Because I am on dialysis, I cannot get further than 72 hours from my dialysis machine. Also, my insurance will not allow me to get my dialysis anywhere else. They assume that I am so sick that I should not be traveling.

The other limitation is chemotherapy. It takes up the other days of the week. However, once a month I do have a break from chemo. Denise and I decided, that since I cannot get on a plane, that we will do road trips once a month when I’m off chemo. We just got back last night from our first trip. It was a 400 mile trip, up through White Rock and Vancouver, British Columbia, then over the Canadian Cascades, down through eastern Washington and back over our Cascades.

Denise was recently in a minor car accident, where she was rear-ended and her car may be totaled. I decided to buy a fun car, a high performance, small convertible. It looks new but it is 13 years old and thus affordable.

Our trip was fantastic! We pretended everything was normal. We made an agreement that I would not talk about cancer or my symptoms and she would not talk about work.  She is not a fan of convertibles (I’ve always driven Jeeps with rag tops and kept them down all summer). But, she allowed me to put the top down and leave it down. This was through two rainstorms and two light snowstorms in the mountains. I think she really enjoyed it.

Once again, I typed this from a dialysis chair and please forgive the typos. I will try not to write so much in the future.

Mike

 

 

 

 

UPDATE: 4/12/19

  • My renal function is slowly improving, but not near enough to get off dialysis, which I still do two times a week. It is still a major area of prayer.
  • I just received my latest cancer labs. My bad protein is still dropping, meaning that chemo is working. At diagnosis, my level was 2658 mg/l. Now it is 89 mg/L. Complete remission is considered when the level is normal, which is >24. So we are getting close.
  • With the addition of a large dose of steroids, my last round of chemotherapy had far less side effects. This week was a week off from chemo and I felt better each day as the side effects (constant flu-like syndrome) slowly lifted. I will start my next round on Monday.
  • Because I cannot get more than 72 hours away from my dialysis machine, we cannot not leave the area. But with this break from chemo, Denise and I took a road trip up through British Columbia and it has been (still on the trip as I write) has been wonderful!
  • I am still plagued by many symptoms, mostly neurological, that is from my renal failure. I keep praying that this would heal, but so far it is no better.
  • I hope to get to the University of Washington to see a Multiple Myeloma specialist. The referral was lost again and we started over with this. I hope that I’m a candidate for stem cell transplant, which would give me the most hope for a future of a few years. Having renal failure is one strike against me qualifying. I am “in training” to increased my chances, by walking 4 miles per day and trying to loose a few pounds.

We need to get on the road so I will do a part II post with details for family and others who are interested in those. But above is the essence of the update.

RAMBLINGS: Things that Having Cancer Have Taught Me (so far)

Someone asked me this question and now that I thought about, I put my thoughts here. This is not the type of list that you would see in a bookstore, certainly not a Christian bookstore. I simply wanted to make honest observations of what—I guess you would call lessons—I’ve learned so far. This is not what I should have learned or “wonderful things” as some of them aren’t so wonderful. But these are honest observations, some expected and some unforeseen.WIN_20190409_10_25_51_Pro

  1. “Living in the Moment” is a Default Reality.

I’m not a fan of fads. I’m not a fan of fad diets, or fad alternative health “cures,” like gluten-free living. Most of all, I’m not a fan of fads in social behavior. In the last decade I have heard so much about “living in the moment” or “mindfulness” and I see it as, yet, another social fad. It too will pass. But that is not to say there isn’t something to learn from it.

In the case of suddenly being diagnosed with cancer and having a close-call with the Grim Reaper, it is a natural consequence to be forced into living in the moment. Before, I think most of my moment by moment thoughts were about the future. I would think about what I need to do tomorrow. I would think about projects for next week. I would think about my career. I would think and plan about my life in retirement, which I saw coming around the corner in a few years.

When cancer intrudes into your life, it is like these huge bulldozers come barreling in from nowhere and excavate your future right before your eyes. They leave, in their wake, nothing but a huge, empty crater. None of the future matters anymore. While I know a lot of very good people work in Financial Planning, and there is a great need for that, when I now see commercials for such services on TV, it makes me feel disquieted. It is the same for anything about the future, like finishing my PhD, people talking about their dream trips. It is hard to explain, but it is like fingernails on a caulk board. I think it is from all the one on one meetings I’ve had about financial planning and no scenario ever came up where I was going to get an incurable cancer at age 63. Now, all my financial planning is meaningless.

On the positive side of this, I have never felt my senses appreciate what is before me on a given moment. The sky seems bluer. The earth feels harder, like C. S. Lewis describes Heaven in The Great Divorce. The first time I walked outside, after being very sick an in the hospital at Peace Health, Bellingham, I cried when I picked up a plain rock and held it. Smells are now intense, and I find them everywhere. Music sounds more beautiful.

I wish I could say that things taste better, but due to the damage of renal failure and now chemotherapy, every food or drink taste like sucking on a burnt cat turd. But beyond that, I savor the sound of the birds, the bullfrogs, and my dog. Isn’t just about nature, as even when I hear a Navy Jet, or private plane, overhead, I want to soak up that sound as the noise of fantastic engineering. When I’m in conversation I feel it much deeper. I see the faces of friends in a new way, where I can read the interface with their souls. It is a bit creepy.

  1. I’m Expendable to Most of the World

 This is a peculiar one. Of course, I don’t feel expendable to my family and close friends. But it is an odd feeling to see how others start to pull away from you when, as one person in my Multiple Myeloma support group said, when you have an expiration date stamped on you. This is most pronounced in my professional world. For example, I was constantly getting e-mails and phone calls from people in the Headache Medicine world, asking me to speak, write and do things for them. I was well-known, nationally, for my work. Suddenly, those have disappeared. They know that they can find someone else who will probably live longer and be of better health to help them reach their goals. I was just an object to them from the beginning. I shouldn’t have expected more.  They saw me as a means to some gain and now they don’t. I’m expendable to them. Some friends saw me the same way and have now moved on for the same reason.

While I do see a pathway for me to return to work full-time and in good health (if a stem cell transplant is offered and works) I think those who were counting on my career have began to cut their losses now and are un-investing me as a future. It is a very strange feeling to no longer be needed. I never anticipated my career ending in such an anticlimactic way.

While the demand for my professional services has always been high (patients waiting in line to see me), suddenly those patients, too, have disappeared. It must be the same reasoning, them not wanting to invest their care with someone who may or may not be here in a few months. The other possibility is that they feel awkward seeing someone who has cancer, as if they are afraid, that they might say the wrong thing.

The strangest feeling of all is in that distant circle of “friends.” Those people, whom you call “friends,” but are just this side of “acquaintances.” So many of them have disappeared. Sometimes, when I bump into them, they seem shocked that I’m still alive. They either pretend they don’t see me (and I know they do) or they stumble for words. I think this is natural, but it still feels strange. It is like they don’t want to invest their energy in someone with the expiration date, or they just feel like they don’t know what to say. Like I have said before, there is nothing that anyone can say that is wrong. There are no dumb questions. The only exception is blaming me for my cancer, which would really piss me off. I know that some will do this. I’ve seen it before. They will assume that I didn’t “take care of myself” or that I didn’t “pray correctly” to be delivered from renal failure and cancer. I hope those “friends” do go away and never look back.

  1. I Don’t Have the Patience for Pretentiousness.

 I have always been an honest person and I don’t mean just trying to tell the truth. What I mean, is that I don’t say or do things just to follow social norms or mores. I can’t count how many times that people have pulled me aside to tell me that what I was saying or doing was not appropriate, not because it wasn’t true or honest, but because it is not what I was “suppose” to say or do in that situation.

I have mentioned that for 20 years I was an Evangelical (in the 1970-80s). Those people are experts in pretentious living (and they don’t have insight into the façade). When you become an Evangelical, it is like one of those huge mega-dump trucks back up to you and pours on you rules of what you suppose to say and do in every moment of your life. It is paramount that you look spiritual, so every word out of your mouth becomes about a “blessing” or “Jesus did this or that.” I was always a square peg in a round hole in that world. I’m not talking about historical Christianity as religion or belief system. But I’m talking about the American-Evangelical sub-culture, which has very little to do with the original intent of Christianity. I eventually left American Evangelicalism when I could not lie (or stomach it) anymore.

Cancer has exacerbated my distaste for pretentiousness. I just don’t have the time for it anymore. I don’t have the energy to say the things people expect me to say and I’m starting not to give a rat’s ass if that offends them.

  1. Speaking of “Rat’s ass” I Swear More.

 No, I’m not standing on a hill shaking my fist and swearing at God for giving me cancer. I’m not mad at God. God didn’t give me cancer. I’m not even mad at the world.

I was never a big swearer, growing up, because my family didn’t swear. I grew up in the Bible belt and most families didn’t swear there. The only people who swore a lot were those, few, who didn’t go to church, or the Methodists, who we believe were “loose.”

Then, as I discussed above, when you become an Evangelical, who don’t even say “shoot” or “darn.” One of my Evangelical friends pointed out to me in the 1980s that when I said “shoot” it offended him because he knew that it was a simple substitute for “the s word.” But “swear words” have absolutely nothing to do with genuine Christianity. I think the early Christians (those who had not been contaminated by secular culture disguised as Christian values) would have no problem with today’s strongest swear words, but would have a hell of a time with Christians saying a pledge to a secular government or saying that something is true when it is not. In the last few years, Americans have lost the hope for truth and Evangelicals have become very comfortable with lies. But they don’t swear.

I’ve caught myself saying stronger swear words and saying them more often. Again, it is not directly linked to the cancer. It isn’t like I’m angrier, but is tied to the things I’ve already mentioned, being more honest . . .  and also tired.

The tiredness is a factor, for example, when I save up my limited energy to drive into town to buy something from the hardware store, then I get home and take it out of the box to find that it was broken from the factory (and now I have to make, yet another, energy-draining, trip into town). I will say things like “Son of a bitch!” I’m doing this more and more often. Denise has said I’m more irritable, but I don’t think so. I would never swear at her. But I’m just venting, more honestly, the emotions that’s always been there.

These kinds of swear words are just tools for emotional venting of frustration and sometimes pain. I swear a lot when I’m in pain, like “Dammit! Or shit!” I’m tired of hurting and hurting is normal now.

I do try to refrain from saying these things when I’m around other people, especially those who (wrongly) see such language as a surface marker for my true character and judge me in that way. I have cancer. I’m suffering a lot. I’m sorry but I have the license now to say a mouthful of “bad words,” if I feel like it.

So, this odd collection of “lessons” is what I have observed so far from having cancer.

Michael, from a dialysis chair in Oak Harbor without time to proof-read.

 

 

 

RAMBLINGS: That Delicate Veil Between Bereavement and Depression

I knew that this day would eventually come and whether it is here now is still not obvious. It is that place of transition between the healthy—even obligatory—period of grief that follows any loss, and the deeper sadness that can follow in the wake of reactive grief.

I’ve never been one prone to depression, although I did have one such period in my life many years ago. That depression episode was clinical and unwholesome. While it may have started with a perception of a great loss, it took a life of its own as a malignant disorder of mood.

Some people struggle with depression as a life-long menace.  For them, and I’ve heard the story many times, they will say things like, “I have a great husband, great children, I’m in good health, and I have a great job . . . yet I feel so very sad.” In that case, the lines of demarcation are clearer and the veil is well-defined as a mood disorder. Such mood disorders are often a problem of genetically-out-of-balance problems of neurotransmitters.

But the climb though the natural landscape of bereavement, across the insidious plain of change, and into the wilderness of depression, is more mystifying and not well-differentiated. Along the route you see insidious signs of change, like the coastal lush landscape slowly melting into more arid lands and eventually high desert. However, there is no road sign that says, “Entering Depression, Leaving Bereavement.”

I’ve attended several clinical workshops about diagnosing prolonged grief disorders vs. a typical grief reaction or frank depression. Many of them touted simple steps for figuring this out. But I don’t think it is so easy. For one, people experience healthy bereavement in many different shapes. I’ve seen patients lose a spouse and then the next time I see them, six months later, they are already starting to move on. They’ve made constructive steps of closure. Still for others, two or three years later, the tears flow as freely as they did the first week after the loss. That variance in grief can depend on many things. Often it is the griever’s own emotional makeup and reserve. Sometimes I believe that it is related to the depth of the loss or possibly, even the breath of the love.

I will not attempt to inventory my losses, as I have before. To do so, always implies a want of pity. But my self-pity will suffice. I will just say the losses were sudden and severe and, with the passing of time, becoming more realized. I will paint the experience broadly by saying, three months ago I stepped from a great world into a nightmare that never seems to end. There is little hope left of normalcy. It is becoming apparent that—baring some miracle—during what years I have remaining on this earth, I will never feel well again. Feeling horrible is my constant companion and the new normal.

Before this point in my life, I had always considered my worst imaginary nightmare as being taken captive by Isis or the Taliban. I shared my story in this blog, a few weeks ago, where I was once in danger of being taken hostage or killed by the pro-Taliban people in NW Pakistan. But I tend to draw from that when I would say to myself, about different circumstances, “At least I’m not a prisoner of the Taliban.” In that scenario, I imagine living in a small, dark, dirt-floored room, where I would be routinely tortured and having mock decapitations. I would never know when the real decapitation might come.

There have been plenty of days of late, where, if I could, I would trade my present life for the Taliban prisoner role. It seems, from the distance, as better. I realize that if I were such a prisoner and endure such torture, that eventually I would want to switch back to cancer-sick Mike of 2019. But this expresses how dire I feel in this moment.

Image result for depression

Now, I must come back to the topic of mood-disorder vs. bereavement. I had a patient once, who had a very treatable form of breast cancer. She was 38 years old and had a 12-year-old daughter. This patient chose to have no cancer treatment, although her oncologist told me she had more than a 90% cure rate based on her specific disease. I argued with the patient that she was not being rational, that her issue was one of mood (she did suffer from depression) and not one of a rational perspective on her cancer. I tried my best to get her to go to a mental health professional, but she declined. She died. It was suicide by cancer. I’ve heard of others who react this way, out of a mood disorder.

There are days that I feel so bad physically and emotionally that if there a big red switch in the room with me, a switch that would lead me to a quick and painless death, I would be tempted to flip it. There may be a time for something like that, but for now, I promised my wife and kids, in the step-down-unit at the hospital, that if they wanted me to fight this, I will. They were unanimous that I should . . . so I am.

Image result for big red switch

But the thing I don’t want is for a mood disorder to seep in, disguised as bereavement, and taint my view of the future and give me the sense of hopelessness when there is hope. While I’m confident that only evidence-based-based medicine can keep me alive, it is doing nothing to help me feel better. My only hope of feeling well again, someday, is that my own, natural body heals through time and prayer. I’ve pleaded with God a thousand times to heal my kidneys, but as the lab done today, they are no better. But for now, I must have the awareness of discriminating between grief and depression, least I become ensnared in a self-imposed hopelessness.  Mike

 

UPDATE: 3/29/19

  • After a long delay, we finally got the correct labs done to show if the chemotherapy is working. I will put a link to the graph below (if you are so interested) to show the changes over time. In summary, it appears that the chemo is working! The bad, cancer, cells (AKA IgG Lambda Light Chains) has gone down from 2658.9 mg/l to now, 129.5 mg/l. Normal is below 24 mg/l. My change represents over a 95% reduction and anything beyond 90% is considered “remission.” We don’t know if 129.5 mg/l can still damage the kidneys, so our goal is always toward normal. So this is good news. If the chemotherapy was not working, and the fact I have renal failure, it would have created a much more difficult course. We will keep me on aggressive chemotherapy until we reach the lowest possible number.
  • My renal function seems to continue a very, very slow road to improvement. However, I will not be able to discontinue dialysis anytime soon. I find that very depressing and still a major area of prayer.
  • I will be going to the University of Washington for a consult with a Multiple Myeloma specialist within the next few weeks (they have to review my case first). The hope is, that they will consider me a candidate for autologous (where I’m my own donor) stem cell transplant. This treatment, while has risks (see my brother’s story below) has the best chance of giving me a few years of survival and possibly without minimal or no chemotherapy and its troublesome side effects.
  • My older brother, Gary, has his own bone-marrow cancer (although different from mine). Ironically, he called me in December about being a stem-cell donor for him. It was only ten days later that I was diagnosed with my own cancer. Gary was preparing for a donor stem cell transplant, which could give him several good years. However, in the process, he developed a systemic, methicillin resistant staphylococcus aureus (MERSA) infection, which has caused multi-system organ failure. He is on life support but is now stable. There is still hope for his recovery and that he can continue with the stem cell transplant, which could save his life. Please pray for Gary too.
  • Today I did my longest walk, about 4 miles. It was mostly flat and slow in an old-growth forest.
  • I had very severe side effects from chemotherapy over the previous two cycles of treatment. This week’s cycle we tried a new approach of adding more high-dose steroids on two days rather than one. It seems to have worked as I’ve had minimal side effects (except from the steroids) today.
  • I want to write about this in my next “Ramblings” but I’m facing a dilemma in how I respond to well-meaning friends and family.  I keep hearing from people (who have the greatest of intentions) “Mike, you look good. I’m so glad you are feeling better.” If I answer honestly, “I’m actually feeling worse,” it seems I am coming across as seeking pity or that I’m a “Debbie Downer.” I am not. I am just being honest. You would think that after 2 plus months since I was discharged from the hospital and have had tens of thousands of dollars of treatments, that I would be “better.”  But you must understand that my treatments, chemo and dialysis, have been targeted toward keeping me alive, not helping me to feel better. Actually, I feel my worse immediately after dialysis and the side effects, until now, from chemo has been accumulative. So far, none of my neurological symptoms, caused by living in renal failure, are better. So, I’m getting out of bed in the morning, I’m walking on trails, I go to work two mornings a week, out of pure discipline . . . not because I’m feeling better. I say this not for pity, but for the sake of honesty. I do pray that some day I will start to feel better. Mike

 

Table of Light Chains

 

UPDATE: 3/25/19

  •  CANCER MONITORING LABS: I said, a week ago, that I would do an update on Wednesday March 20th about a lab test that would tell if my chemo is working to suppress my cancer. Well, I have no news and it is now Monday. It is disheartening, but I’ve had another week of chaos in my care plan.

I went to the lab last Monday (March 18th) to get those very important labs done. I challenged the lab tech when he had only a tube for a blood count and a tube for basic chemistry and no tube for the protein electrophoresis and or, the very important test that counts how much cancer I have, called the IgG Lambda light chain protein (the bad one). The tech assured me he had it right. Well, he didn’t.

Image result for confusing blood draw in the lab

I had to go back to oncology to get my labs straightened out. They sent me back to the lab on Wednesday, March 20th, for another draw. Once again it didn’t look right. It wasn’t (we don’t think as it is still not clear). He did the general protein electrophoresis that time, but so far, there as been no result on the IgG Lambda light chain protein and we are guessing it was not done.

Tomorrow I meet with the oncologist to go over these tests and to design chemotherapy around my response. But now (unless the results come in late tonight) we are in the dark. Those labs would have told me if I’m living or dying.

Image result for igg lambda light chain the devil

The Yellow in the photo is my bad guys. Normally they do good things, but when their level is in the thousands, rather than less than twenty-four, it takes out the kidneys and your life.

  • CHEMO ROUND 3: Today I started my third-3-week round of chemo after taking a week off. The orders for the chemo also did not go through and I had to scramble toward the end of last week to set those up or I would have missed a whole round. This is all frustrating as I fighting for my life here. But I will give them the benefit of the doubt about getting use to a new electronic order software and the staff who are overwhelmed.

I started out as a star patient with virtually no side effects from chemo during my first two rounds. But the last round has been brutal. Even though I had a week off, the side effects never cleared. I will see how this present round goes, but I have some concerns that it will not be any better as it is the same protocol.

So, this was meant to be short, I will post about my labs and how well my cancer is being treated, as soon as I have those.

  • My Brother Gary: My brother came down with a bone marrow cancer just before I did (somewhat different). He was a few steps ahead of me. He was scheduled for a stem-cell transplant (what I’m waiting for). He has become seriously sick with a serious infection and is fighting for his life tonight. I can’t travel to see him due to my chemotherapy and dialysis. It has been a hellish year for my family. Loosing my mother in July. Then my brother got sick. He called me to be a stem-cell donor for him, then the next week I’m diagnosed with bone marrow cancer.

Image result for chemotherapy

  • KIDNEYS: Nothing new. Keep praying! Still on dialysis.
  • THE FUTURE CURE: Some day there will a cure for Multiple Myeloma. There are none now. When this cure comes, it most likely will be in the form of new therapies called CAR-T or BiTEs. I am fighting to live long enough to partake of the cure. These treatments use your own immune system to go after the cancer as if were a bacteria or virus. Next Tuesday (April 2nd) morning, the 2019 update on these therapies will be discussed in an online medical conference.  I am posting this here for my family (who may be interested). You can sign up to be part of that here: https://event.webcasts.com/starthere.jsp?ei=1233305&tp_key=298299e0d1

Mike, still fighting at base camp.

Image result for base camp