Blog

RAMBLINGS: The Medicine of “Good News”

I don’t mean to dash your hopes, but I am not writing this because I have received some good news to report. I guess you can say that getting into the stem cell transplant program (so far as the verdict is not completely out yet) is good news. Otherwise, my life expectancy would be half as long . . . or less. But it is like a Nazi saying to a Jew, I want to shoot you in the head right here, but the good news is that I’m sending you to a concentration camp instead. So, even getting into the stem cell transplant program is a good news of a mixed value.

I am writing about the topic of good news because I have spent so many hours in wait of such news, only to be disappointed. Okay, there has been some other low-key good news things that seep in now and then. For example, I am thankful that I have fallen into the 85% of people who, initially, respond to chemotherapy. It would have been an even greater nightmare if I had not. But when you take my life over the past— (wow, is it almost five months now?) —five months, unless you are Pollyanna, I have had a shit-load of horrible news, and it keeps coming.

Now I will digress a bit by saying that people complain a lot either because they are complainers, or because they have been dumped on by bad news, and they are honest. I think I fall in the latter category, or at least I hope. Neither I, nor others, have ever seen me as a complainer. Maybe Denise at times sees me that way, but no one else. I’ve spent my entire 38-year career listening to others complain, and I was doing it with great enthusiasm because I really did care about them. I cannot remember anyone coming up and asking me how I was doing and then me starting off on some thirty minute tale of suffering . . . before now.

As I was thinking about the topic of Good News, I first thought about what we were taught as evangelicals. We were told that the term “Good News,” at least as the way it appears in the Bible, ALWAYS means the Gospel. The Gospel meaning, we came into a fallen world, we have done bad things. We are separated from God. God redeemed us by having Jesus die on the cross and if we just believe in him, our sins are forgiven, and we will forever. That was the absolute boundaries of the term “Good News” for us. There was no other common meaning of the term.  However, I see it differently now.

I want to share a couple of, the many verses, from the Bible about good news and talk about them on the other side.

How beautiful on the mountains are the feet of the messenger bringing good news, Breaking the news that all’s well . . . Isaiah 52:7 (The Message).

A twinkle in the eye means joy in the heart, and good news makes you feel fit as a fiddle. Proverbs 15:30 (The Message).

Good news, not just the Gospel, but all good news, does profound things to our soul, our psyche and health. That’s the message I hear from these two verses and it is consistence with what I see in real life. I love it when patients tell me that they are better after suffering for years. That is good news to them, realized, and to me good news to my ears.

I was thinking with my personal horror story (and it is a horror story, and if you think I’m being melodramatic then let me change places with someone being alone and stalked by Hannibal Lecter in a dark forest, late at night, and I would choose that in a millisecond if I could also have my healthy body back.) I have longed for good news for so many hours, only to have been thwarted.

I can close my eyes for a moment and imagine waking up one morning and not having twitching from my face to my toes. A 24-7 twitching that has almost driven me crazy A twitching so bad, that I’m glad I don’t have a gun in the house. A twitching that my doctors can only guess is motor-neuron injury from living in renal failure, but they have no solutions. I would fall to the ground in tears if that was the good news. I would sense a healing in my soul that goes far beyond the healing of my motor neurons.

I can also dream of looking up lab values and seeing that my creatinine was 1.2 (normal). I would break out into sobbing and run and dance in the streets of Anacortes, naked if you want. What healing, emotionally, can good news bring to tired souls.

Those two fantasies of good news don’t even touch on the cancer being healed. My heart would not have the capacity to handle that level good news.

Yes, I know that there are people worse off than me. I had a conversation with one yesterday. She is in her 40s and, according to her, she has a less than 1% chance of surviving her cancer for one more month. She has kids at home. She is suffering from terrible pain. While I have pain, it is not excruciating like hers.

I just feel that there is something missing in healthcare, and in life in general, were we are forgetting to share good news to help others. I don’t mean living in denial. It would be shameful to tell someone that they were fine, when they were dying. But you can look at this with a grim face and say, “I’m sorry but you have virtually no chance of beating this.” Or you can do, as I tried to do yesterday, by saying, with a bright smile, “Hey, you have a chance! You can still beat this! There is still hope!” That is the kind of good news that can change one’s soul, one’s heart, and one’s health.

Jim Carrey and a way to look at the “Odds.”

 

UPDATE: 4/30/19

Stem Cell Transplant

Tomorrow I enter the Seattle Cancer Care Alliance’s autologous (meaning, using my own stem cells) transplantation program. It is one of the first in the world and highly regarded. I will give a tentative schedule.

  • This week, I will start my work up, including exams, labs, bone marrow biopsy, MRIs and bone scans. We will stay in a hotel room just for the program and then be released to come home on Friday.
  • Next week I will continue daily appointments as the work up continues. We will stay in the same hotel room.
  • Somewhere toward the end of next week, when all the tests are done, a final decision will be made about my approval for the transplant. We will be released to return home on Friday 10th for the week end.
  • If approved, I will return to Seattle Monday morning May 13th. I think I will be admitted to the U of Washington Medical Center, where I will have a catheter placed in the left side of my chest (I still have one in my right). I will be given drugs to stimulate my bone marrow. After a few days, my blood will be drawn off and processed, removing stem cells. The goal is to gather 2 million stem cells. If we can’t get that many, then family members will be contacted as possible donors and the process will be put on hold.
  • After the collection of my stem cells, a harsh chemotherapy drug, melphalan, will be given to burn out my present bone marrow, and that could be around May 22nd. This is one of the most difficult times of the process as most patients are quite ill and 5% do not survive, based on my diagnoses.
  • After a couple of weeks, if no setbacks, my stems cells will be thawed out and infused back into me. During this time, before they set up house keeping back in my bone marrow, I will be at risk for catastrophic infections. I will have to remain in isolation, inside the hospital, until mid June.
  • Then I will be discharged to a local residence, where I have to be very careful until my bone marrow rebuilds. If things go well through July (I will be seen in the clinic daily through July, with readmissions any time I run a fever or get too ill), I will be discharged on August 9th.
  • The subsequent months I will be at home but with limited contact with the outside world.

Kidney Function

My latest labs were yesterday. My kidney recovery has been as disappointing as hell. The word frustration is too mild of a term. So, in summary, when you look at one main toxin, creatinine, it had dropped slightly a few weeks ago, but has now plateaued. My algorithm, showing the accumulation of creatinine per hour, must be at zero for me to ever get off dialysis. See the chart below:

 

Creatinine Accumilation Table 4-29-19

If you combine the fall of creatinine with that of BUN, you get a little better slope of decline as seen in the graph below. The yellow line shows the slope of the line. This one must be at 40 to get off dialysis.

Creatinine + BUN 4-29-19

As I had mentioned in a previous Ramblings post, it has been a very discouraging week, emotionally, regarding my kidney function. I was re-diagnosed, without any discussion with me, as “End Stage Renal Failure.” That is a billing code so the dialysis center gets more money from insurance, but it implies that you are never getting better, and the people here treat you that way. I did find one study of people exactly like me, finding out they are in renal failure, caused by Multiple Myeloma, and the average time to kidney recovery was 6.1 months. I’m half way there now.

As soon as I get to the University of Washington, I want to pursue getting a catheter in my belly so I can start home, peritoneal dialysis and get this catheter out of my chest. While I hate dialysis more than you could ever imagine, if I do it myself at home, I think I can more tightly control the toxins in my blood. By doing so, I might be able to reduce some of my neurological symptoms, which are my worst symptoms, and a big part of the nightmare I find myself living in. It seems that my neurological symptoms are getting worse rather than better.

Ramblings: Compassion, The Missing Link in Healthcare

In case you don’t know, I am . . . or maybe “was” is the better term, a medical care provider before all this shit happened. I am part of the “system.” Now, I am part of the system as a patient and the view is very different than what I had expected.

I had always thought that compassion was important in healthcare. If my mother was here, she would tell you that I was different from birth. I had an unusual amount of empathy, where I felt guilt and sorrow if I stepped on a bug . . . accidentally. I felt the bug’s pain and felt grief that I had ended their short life.

I never entered healthcare as a profession because of the draw of money. It was never part of the equation. My long-term plan was to work in the developing world for just enough money to buy food. That didn’t work out, but I did find a niche in the world of headache management. I tried to get out of that field several times, however, I kept running into patients who were being treated in what you might call a way without compassion. Eventually, I gave up and committed my entire career to these folks. I have had colleagues who felt that I threw away a career, when I could have been making big bucks doing something else, like Emergency Medicine.

I hope that I treated my patients with compassion. I felt about them, the same way I thought about good friends. I knew their names. Most of the time I knew and cared about what was going on their families and in their non-headache lives. I certainly knew what was going on with their medical care from visit to visit.

As a patient and as I’ve tried to navigate our complex healthcare system, I have found compassion deeply lacking. As part of the system, I am ashamed to say that. I define this show of compassion, which is missing, as not just lack of empathy but taking the time to know who I am as a person. I have found that most of the medical providers I’ve been seeing, don’t know me. They don’t remember me from visit to visit. They don’t know that I go by Mike rather than Johnny. Sometimes they don’t know my medical diagnosis or what our last plan was. I find that very disconcerting and disappointing. If I had not been a medical provider myself, who is constantly having to make sure the right labs are done and the right medicines are prescribed, I don’t know how I would have made it.

I will pause here to say this lack of compassion is not universal. When I was in the hospital at Peace Health in Bellingham, I had one nurse, Erin, out of several, who saw me as a person and not a “bed.” She knew my diagnosis, and I didn’t have to remind her with each shift change as I did the other nurses. She cared how this new (and it was brand new at that time) diagnoses was impacting my, and my family’s life. She cared about my mental state and she cared about the care I was getting. When I told her that something needed to be changed, she worked to change it. The others didn’t remember and never responded to my requests, because they were too busy, I assume. I know they weren’t just playing cards but taking care of many other patients.

I think my primary care physician knows me and cares. He is not much in the loop because I have not seen him in a while. I will see him Monday to bring him up to date. But his lack of knowledge is not due to not caring or having compassion.

This thought about the lack of compassion came to a head this week. I don’t have the time (I’m on a dialysis machine right now and my laptop’s battery is almost dead) so I will summarize. There were three things that happened, where providers and caregivers showed that they had no clue what was going on with my care, but I will mention just one of those experiences.

I was asked to fill out a mental health survey several weeks ago. A social worker, whom I’ve met with twice before, said she needed to talk to me. She was (rightly) concerned that I expressed that I was very depressed and the reason for that depression (and this was all multiple choice so I just picked the best box) was due to my “perception that my health had recently deteriorated.”

This social worker apparently never looked at my chart. She didn’t know me from Adam. She started out saying that she was confused why I felt like my health had recently deteriorated. Afterall, my health had been in a long gradual decline. She added, once I get my transplant, I should be restored to much better health.

At first, I thought she was talking about my stem cell transplant. I assumed that she knew about this major event. But it suddenly dawned on me, and with some disbelief, that she didn’t know who the hell I was. I asked her, “What transplant?” To which she answered, “Your kidney transplant.”

I explained to her that I was not the typical dialysis patient who had suffered from diabetes for decades and had a gradual decline. But, I had cancer, which had suddenly intruded into my life. The cancer makes me ineligible for a kidney transplant. She seemed quite confused. “Cancer? You have cancer?”

So, rather that admitting that she either was working on just assumptions and never looked in my chart or didn’t remember our two previous conversations about my condition, which were just a few weeks ago, or she had looked in the wrong chart, she just looked confused and left.

With that encounter and the two other similar encounters I had that day, I felt like I was alone, a drifting ghost ship in this vast sea of meaningless healthcare. Where things were now centered on the system getting paid and not the person. I’m sure the social worker’s visit had something to do with getting paid by insurance. When the hospitalist (the doctor who takes care of you while you are in the hospital) listened to my lungs through my blanket and heavy shirts, I knew that he didn’t give a damn about my shortness of breath, but was just going through the motions of clicking off boxes and getting paid. It took my nephrologist later that night, who really listened to my chest, to find that I had fluid in my lungs. She had some compassion.

Now, I don’t want to demonize the healthcare system as being uncaring and “money hungry.” I was a medical practice owner once and was quickly confronted with how difficult it was to get paid by insurance companies. I soon became obsessed with payments too, but not to get rich, but to keep the clinic open. As matter of fact, I took no salary for the last six months of the clinic’s existence. It wasn’t that we didn’t have customers. We were overwhelmed with demand. But the rules about getting payment is like entering a house or mirrors designed by Stephen King, the horror-writer author. I hope that even in that dire situation, as we did have to close the clinic to save my mental health . . . and to avoid bankruptcy, that I never stopped being compassionate. That I never stopped seeing patients as human beings and that I never stopped lying awake at night worrying about them when they were not doing well, rather than laying away worrying about financial failure.

Our system is screwed up. I wish the non-medical person could see how messed up the system really is. It isn’t because medical providers and caregivers are bad, uncaring people. It is because now everything is driven by getting payments and if those payments don’t come in, the entire system collapses.

I want to plug a book now, and no it is not one of mine. It is a book, Compassionomics: The Revolutionary Scientific Evidence that Caring Makes a Difference, which just came out that shows, scientifically, showing compassion really does make the patients get better sooner and reduces costs.

Yes, the survey that I took did capture the fact that I’m depressed. It is hard, and I know that I’m not the only one, to go from a great state of health and a future, to overnight, living in a medial nightmare. Yes, I do know that there are people who are worse off than me. And yes, I pray. I pray constantly. I pray with so much sobbing that the words can’t form and that I trust that God can hear slurred words. However, I still have constant symptoms of pain and neurological complications of renal failure and it appears that no one can help me. It is hard to get some of my providers to remember that I am presently suffering with these terrible problems. My future also looks grim. My greatest hope of just living a few more years is going through this horrible process of autologous stem cell transplant. It has no promise of enhancing my low-quality of life but just keeping me alive longer. It is no coincident that during my late-night insomnia episodes, from the high does of steroids that I must take, I do searches for the best ways to end my life.

Don’t get me wrong. I do see the rainbows, the sunsets, the marvelous world in which we live, but that feeling of euphoria, only makes leaving this world more difficult. That pleasure, along with the pleasure that my family gives me, is what is keeping me alive.

I am deeply grateful that I have a wife, kids, and friends who do know me. They know my name. They know my disease state and they care deeply. It is for them I march forward in this fight to survive. I have crampons on both feet now. I see the summit through the clouds, yet the route is still formidable. Maybe I will be surprised that my relationship with the healthcare system will improve as I enter the three-month long stem cell transplant system. Maybe, on the other side, some of my symptoms will improve, although stem cell transplant is not designed to improve them. But I’m praying for a miracle.

I am writing this today because I had just listened to a review of Compassionomics: The Revolutionary Scientific Evidence that Caring Makes a Difference on CNN. It was on my mind during my drive to dialysis. Then I was confronted with forms to fill out that indicate that no one here knows me, my diagnosis or plan. I am just a chair, that must be billed for and that payment must be collected. That’s the primary goal. Yes, many of the people who work directly with me here are kind and nice. I’m getting to know about their lives. But, they have no clue how I ended up here.

I am sorry that I have more typos than normal. I have typed as fast as I could before my laptop went dead, through a dressing change, and with tubes of my blood racing across one arm and a blood pressure cuff on the other. I’m also sorry that my writing was much more raw than usual. It is sunny outside and maybe I will feel better once I’m home.  Mike

 

 

 

Renal Update

I said that I would post today’s labs, once I’ve run them through my algorithm to follow  my renal function because my kids do check this daily. I will add a caveat, that creatinine can fluctuate widely based on diet (for example lots of red meat can raise it) so take one data point with caution. So, today, there was an uptick, but I’m not too discouraged about that. It is still lower than the plateau that I was in for most of the month. Also this graph does not capture the toxin BUN. When the creatinine accumulation was at the lowest point, .09, the BUN was 45 and today, the BUN was 40. (Normal is somewhere below 20). I need to develop another algorithm that combines BUN and Creatinine accumulation. Maybe, because I’m high on steroids again, it is sometime I can come up with at 3 AM again. The next lab will be 4/29/19 and we will know much more by then. Also, I do have my monthly meeting with my nephrologist tomorrow and I will post if any thing new comes up.

4-22-19

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.