I think the greatest challenge in fighting cancer is getting out of bed in the morning. It is the pivotal moment of life. The bed is warm and with nights of little sleep, rest still seduces you to stay, but to no point. If I even stand, the war begins.
If I don’t stand and stay in bed, there will be no more sleep. If sleep came only in small pieces during a dark and peaceful night, it will not come at all with the sunlight streaming in through the windows and the noises of day seeping in from under the physical doors and through the air from the electronic windows out to the world.
It becomes an issue of purpose. We only get out of bed with an impetus; to get ready for work, to go to a career, to build something, to write something, or to change the world in incremental points.
Where there are no longer purposes, no careers, things to build that will only rot, things to write, that no one will read, what is the point? Why do we stand up?
At one juncture, there was an illusion that I could get up to fight this fire that burns within my bones. I can’t see the fire, but I feel the smoke. It is suffocating me. The smoke is everywhere, robbing me of feeling well and of the stamina I need to do anything. But how do I fight it? I keep hoping that I will awaken to a new day with less smoke, but it never happens. There seems to be no healing.
I fought hard for months, doing everything I could, exercise, diet, rest, and research, and it gained me nothing. The fat, Twinkies-eating, smokers and drinkers, who laid on their couches and did nothing, fared better than me. So, what’s the point anymore? How do you fight an illusive fire that you can’t see, that no buckets of water can find, a fire with a determined mind of its own? Is prayer the only thing left? If so, it is done just as well, if not better, from beneath the blankets and lying on one’s back and avoiding the war for another moment.
But there are dishes and clothes to wash, floors to sweep, dogs to pet, coffee to drink, vistas to perceive, and sunbeams to feel. But is that it? Did the writer of Ecclesiastes understand what we never do?
You can have long “to do” lists, and still no purpose. Adding to the list adds nothing to your life, except the regret of being further behind in chores. There are plenty of people willing to give you a purpose, to serve their needs, but it too does not help. Mike
There is not enough here to warrant a posting, except this is where most of my kids and family find out what’s going on and I wanted to focus on some good-news items (as the previous posts had so much bad news).
As I said before, this is so important to me because it would be very bad news if I had to go back on dialysis. While dialysis is a pain for anybody, for me, when combined with the cancer, it would mean my life expectancy (based on statistics) would be cut to 1-2 years at most. Also, rather than dialysis making me feel better (riding me of toxins) it made me feel horrible for 48 hours. When you do it three times a week, it leaves no cracks for any quality of life.
The best practical way to measure renal function is a 24-urine collection for “creatinine clearance.” The normal for a man is above 60 ml/min. Dialysis is needed when it drops to 15 ml/min or less. When I was first diagnosed in Jan 2019, mine was 5 ml/min.
When I got to the cancer center, the nephrologist asked if I wanted to check again to challenge dialysis and I certainly said yes (my previous nephrologist had given up, saying I would be on dialysis for life). Then, when we checked it, my creatinine clearance was 24 ml/min, which is awful but does not require dialysis.
I just did a 24-hour collection two weeks ago and we just calculated my creatinine clearance and it is 29.5 ml/min, while still terrible, it is showing a significant improvement and takes me out of immediate danger of having to go back on dialysis and making the cut for the studies I’m trying to get into (which require a creatinine clearance of more than 20). So my kidneys were functioning at less than 10% in Jan, are now near 50%.
While I did my stem cell transplant, I was under the care of one of the top 5 Multiple Myeloma specialists in the country. She always turns you back over to your local oncologist when the stem cell transplant is complete. She, however, has reviewed my staging tests and called me yesterday. First of all, she doesn’t think it was a total loss as have had some subtle improvements including; 1) lesion in my scapula is gone, 2) the amount of my bone marrow taken over by the cancer is 1/2 of what it was and the 3) M-spike (the marker for the expression of the wayward plasma gene which is causing the cancer) went down from .2 to .1 (it has been .1 for most of my life). So, she has declared the stem cell transplant as a “partial response.” That is still not what we wanted as the cancer is still active and producing the kidney killing bad proteins. However, it may make the cancer easier to treat. We hope.
She also wants to see me to discuss the options going forward and I will see her Oct 22nd. I am still scheduled to be screened for the study on November 5th.
Yesterday I restarted chemotherapy with two drugs. One is the same one I had in the spring (Velcade), but at a much lower dose. In the spring it made me have flu-like symptoms for a few days. The second drug (Xgeva) is to harden my bones. My bones are fine right now, but MM often causes bones to dissolve and break and is one of the leading ways it causes death.
The good news is now, 24 hours after the chemo, I’ve had no side effects except for a slight nausea. That is promising, now only if it works to contain my cancer.
My anemia is very slightly improved this week and my white blood cells are stable at low-normal.
I am feeling about the best I have since being diagnosed in January. In the spring I felt horrible due to the chemo and dialysis. In the summer I felt like death warmed over due to the brutal stem cell transplant process. Now, except for the old neurological symptoms (which are some better) and the effects of being quite anemic (limited exertion), I’m feeling pretty good and in no serious pain.
So, compared to the endless march of bad news, this has some good news embedded here. Mike
Summary (for those like me with a short attention span): Not a lot new since I shared my last update, except that I reached out to the Seattle Cancer Care Alliance, and have been invited to be evaluated for a cutting-edge (CAR-T + 2 or 3 modifiers) study on November 5th. If accepted, I would spend two months in Seattle, starting in December or January. It is not nearly as harsh as a stem cell transplant and has some great hope. I will describe more about that below in the longer narrative. I will start chemo on Tuesday and do it every other week. If it does not work and I don’t get into the study, it will be modified by adding more medications.
Background (long version): I’ve said before that having cancer is like the roller coaster ride from hell. One minute, it looks like you are going to suffer and die within weeks and the next minute there is hope for a cure, then vice a versa.
I will admit that after I posted last Tuesday (and just hearing from the horse’s mouth that the stem cell transplant did not work) I had a sleepless night. I don’t say what I’m about to say to add melodrama, but to be honest. During that night, and things are always more gloomy and frightening during the night, I had thoughts of how to take my own life. I’m glad that the only weapons in the house are a couple of bows and a Viking sword. It is hard to harm yourself with those. That’s how down I felt.
I had such thoughts back in the spring for a different reason. Then, it was wall-to-wall suffering and felt like dying was the only way out of the nightmare of suffering. Now, it is very different. I am doing the best (as far as the way I feel, while right now the cancer is growing unchecked) I’ve done since I first got sick back in December 2018. The stem cell transplant kicked my ass, but I’ve mostly recovered from that by now. My over-all energy level is 80% of normal, although my exercise tolerance is still quite low due to my anemia. But even my exercise tolerance is improving, gradually. I certainly couldn’t run and have a hard time walking up an incline. But I did walk 5 1/2 miles on Saturday and 5 miles on Friday. I walked 2 1/4 miles with Jerry several other days of the week. Even my neurological symptoms have improved. So, I’m not suffering that much.
I think what happened Tuesday night and Wednesday morning was a near lethal dose of disappointment. I could no longer hold back the tears and felt so hopeless with the failure of the stem cell transplant that I didn’t want to live any more, just to avoid such harsh disappointments again.
But, by Wednesday I had recovered enough emotionally to start the fight again, for the sake of my kids and Denise. It was nice to have a visitors Don and Craig this week, and last week, Curt. Now that my white cells have rebounded a bit, I’m trying to get out more to the coffee shop as I think it is healthy to be around people and not so socially isolated.
So, it was Wednesday that I started to look for a good study to get into. I specifically was looking for a cutting edge therapy, one that would give a hope of a long-term (years) of remission or even a possibility of a cure. The major one of these new therapies is CAR-T (I will explain more about it below). I contacted the Seattle Cancer Care Alliance. They reviewed my chart and called me Thursday morning. I’ve been approved to be screened for the study on November 5th. If accepted, I would go down and enter the study in December or January and stay for two months.
CAR-T Background: To summarize, CAR-T is a process that is being used for several cancers, including Multiple Myeloma. It is where they stimulate your bone marrow to make white blood cells. Those cells are then collected and the T cells (a very important part of our immune system, and the core to that part which adapts to different threats) are removed. The T cells are taken to the lab and then are modified with a gene, (using an impotent HIV virus), that makes the T cell go after BMCA, a marker on the surface of Multiple Myeloma cancer cells (and I’ve been tested and my MM has BMCA).
When CAR-T was first tested in MM, around 2014-2015, it was thought to be a cure. They took MM patients with advanced disease and who had failed at least 8 different treatments and almost 90% had no evidence of cancer after the CAR-T treatment. However, to everyone’s disappointment, the cancer came back in 1-2 years in most of them. Some of them still have no trace of cancer. The thought now is that the CAR-T might work much better in earlier MM (such as myself) and when combined with other drugs that might help to to work better.
If I were to go through a CAR-T treatment and paid for it out-of-pocket it would cost almost 1 million dollars. If I enter the study, most of it would be covered and then, hopefully, my insurance would pay the $150,000 that is not covered. If my insurance refused to pay, then I would be at a “Sophie’s Choice” juncture. I would hate to die and leave my family in debt. Yet, if I lived for years after this treatment, I could earn the money back. I pray I don’t have to make that decision.
To qualify either one of the two studies (and I’ve already reviewed the inclusion-exclusion criteria) the main thing is my kidney function cannot get any worse. The best measurement of kidney function is what is called “Creatinine Clearance.” Normal is above 60. My last measurement was 24. The study requires it to be above 20. The risk to my kidneys worsening between now and then is that my cancer is growing right now and making more and more of this kidney-damaging protein.
In the meantime, I will restart chemo on Tuesday (Velcade). I was on it in the spring and it made me deathly ill (like a severe flu 24-7). This time around, we are using 1/2 dose every other week rather than a full dose twice a week. So, we hope that I don’t get so sick. However, will it work at this dose? Time will tell. If it does not and I cannot get into the study, we will add another expensive drug, Daratumumab.
WRITHING: I am back to writing books. I finished a novel that I had started in April, Christina Athena; The Girl with the Headaches. It is off to the copy editor and then to press in about 2-4 weeks. Once that project was done, I could return to my true love (beside Denise. . . and Greta. . . and my kids of course) a novel that I started in the 2017. It has been interrupted over and over by other priories. It is done except for the closing chapter.
As I’m reading though this manuscript, which I had not picked up since Jan 2019, I have to say that I am impressed. Sometimes I am very critical of my writing, especially since none of them have been a commercial success (which I don’t measure as “getting rich” but earning more than they cost to make). However, I think I’ve done a good job with this one. Now, if I can bring the story to a conclusion and get some help from editors, it will be on its way to press in a few months. The title of it is; Rock Harbor. It takes place (mostly) in a coffee shop in the San Juan Islands in a beautiful harbor town. The barista, Halem, meets a mysterious man (Winston) who comes rowing in from the sea in a dingy. But is he the world’s most prefect man. . . or a complete fraud?
I probably will not be back for updates, I hope, until after November 5th or unless something good or bad happens before. But with this information, you know about everything and how to pray for us. Mike
I will start with the preverbal good news first and see if I can get some lipstick on this pig.
My white count has suddenly jumped back up to the normal range after being severely low and was putting me at risk for a serious infection. For that I’m grateful.
My red blood cells are slightly higher (less anemic) with a hemoglobin of now 10. I can tell the difference where I’m not short of breath as I’m sitting or tachycardic, but with exercise I am.
I had a full body MRI which showed no boney cancer lesions. I had one lesion on an MRI prior to my stem cell transplant so either that is better or the first one was an artifact (not real).
Have you ever had one of those experiences where you get some really bad information and then the next day you don’t believe it is real? Well, a week or so ago, when I got a glimpse of my bad protein and saw that it was unchanged (actually a little worse) than before the stem cell transplant, I had a horrible feeling as I expressed here so clearly. But I wanted to hear it from the “horse’s mouth,” meaning in this case, my oncologist. Well today, the horse spoke. I was not delusional. It may very well be that the stem cell transplant, with which I had hoped of reaching almost a cure, did nothing for me, except to make me suffer horribly (including all the complications I had afterward), costing ½ million dollars, and now putting me at quadruple risk for getting other cancers (a standard risk of stem cell transplant). I am also not a candidate for another stem cell transplant because the first one failed.
I can’t say this is my worst nightmare, because a total lack of response wasn’t even on my radar. About 20% of stem cell transplant patients reach the near cure. In one study, 92% had some remission. There is no evidence at this point that I’ve had any benefit, so I would fall into the miserable 8%. I had at least that much hope and so many were praying for a good outcome.
At this juncture, there is a slippery slope toward a rabbit hole of despondency or bitterness. The thought of all I’ve gone through for almost six months and to have nothing to show for it is almost beyond comprehension. Self-pity is also a drawing force. Therefore, I will choose, as best as I can, not to let those thoughts enter or take over my head or they would consume me. I just will not go there.
So, what does this mean? On Tuesday of next week, I go back to traditional chemotherapy. If I am really lucky, and so far, I haven’t been, the cancer will have weakened a bit and it will respond even better this time. After a few weeks, if the cancer isn’t going down, we will start to add more drugs to the treatment. We have several others to try, then there are experimental studies after that. There are good things coming, but most are a few years away. Some people do well for many years on chemotherapy alone and that is our hope and prayer now.
I think the emotion that cancer patients deal with the most is fear. Where else in life, except on a major battlefield, are you faced with constant flow pivotal points where you will either suffer without mercy until you die, or on the other extreme, do pretty well and survive for years. Tomorrow is a major of one of these points as I meet with my oncologist to review the new re-staging of my cancer. We already know that the stem cell transplant was not perfect as I still have the elevated protein that the cancer makes. But, will I be in a partial remission… or was the stem cell transplant a total failure?
I woke up feeling depressed today. The reason is, Denise and I planned to have one week where we pretended that I did not have cancer. That week was last week, and the masquerade ball ends today. It was not that hard to pretend as I felt better than I have in a long time. I just got my CBC drawn, but I can tell that my anemia has improved before I see the results. While I still am very limited in what I can do physically, due to the anemia, I at least don’t have a constant—even at rest—tachycardia and shortness of breath.
I think the emotion of fear has gotten a bum rap, especially in the Christian community. I suggest you do a word search in the Bible for the word “fear.” The Old Testament the word is mostly associated with a good trait of “fearing God.” In the New Testament it is usually described in an amoral context, “they were fearful,” without any commentary on it being good or bad, but just part of the human (and animal I may add) condition. Paul even talks about his own fears (e.g. Galatians 4:11). A lot of Christians misquote I John 4:18 about where love cast out fear. That should be a no-brainer. Does a wife have more fear living with a husband who does not love her or one that does? Do children of loving parents have less to fear than those of abusive, non-loving parents?
As an atheist or even a theist who believes in evolution as the driving force in shaping who we are, it is easy to see how fear has been healthy. It is true that those who fear the most, up to a point, live the longest and healthiest. Fear guides us away from danger, be it a long-face bear who was trying to eat our ancestors during the last ice age or driving recklessly on slippery roads in modern times.
Alex Honnold is considered by most to be the top rock climber in the world. He is of the elite class of rock climbers that do not use any protection to save themselves if they fall. A few years ago, as an experiment, they did a functional MRI on his brain. He was found not to have the normal circuits that connect from our senses to the emotion of fear. As great as a rock climber as he is, most in the field say that if he does not change, he will not survive to see age 30. All other free climbers, who take on the same risks, eventually fall to their deaths. I think the same mis-wiring of the brain must be true on some of the wing suit flyers and base jumpers, who have a very high chance of eventually dying. This why healthy fear can save us.
In an intelligent design model, as most Christians subscribe to, fear is a gift of God to help us navigate a dangerous world. It is not a sign of weakness or sin, as many think. We should thank God for this wonderful gift, not feel the guilt thereof.
I think there are three ways in which we approach fear. The first, the healthiest, is to try to keep it from going to the extreme, so much so it robs us of the joy that is present in each day. The other two ways is to hide fear and lie about it to others, or to delude even ourselves.
I want to share a couple of stories that date back, first to my evangelical days, and the second one happened during my transition out of evangelicalism and was still trying to figure things out. But first, to avoid the misunderstanding of previous posts, I want to define what I call evangelicalism. Some suggested last time, I was using the term to define all true Christians, which meant I was not one. Others said that I was an atheist because I didn’t believe the Bible. But I want to be clear, I’m talking about a well-defined, American, White Evangelical subculture (I will call AWE), which defined by social beliefs (such as being a staunch Republican, despite who is representing their party, all gays, liberals, as well as all Catholics are going to hell, screw the environment because it is all going to burn, and etc.) and has NOTHING to do with theology or the Bible. Sociologists know whom I am talking about. These attitudes are not present among other Christians of the world and even not among minority Christians in America. That’s why AWE is distinct.
When I was in my late twenties, I was a true blue (maybe I should say “red”) AWE. As we were preparing to go as missionaries to the Middle East with an AWE organization, I was on a circuit of preaching and speaking at, mostly AWE, churches. I was also living in the typical pretend world where I thought I was “godly” and above most other people, even other Christians. To maintain this façade of godliness, I had to do a lot of lying and self-deception.
I remember speaking in front of one large church and commenting how I had no fears and slept like a baby. This was despite the fears that most people had about terrorism and traveling in the Middle East (this was well before 9-11, when hijackings and plane bombings were commonplace. One of our team members of the AWE organization in the Middle East had already been in, and barely survived a bombing). I pointed out, as proof of my fearlessness that I had quit my job, sold all my possessions moved into a van with my pregnant wife and two small children and was preparing to move to this hostile place with them. I did not tell the group of how these fears did keep me awake for many of nights.
After speaking that morning, a church member came up to me. I could tell he was distraught. He was about 44 years old. His father died of a heart attack when he was 45. This man had just had a major heart attack himself and barely survived (I think the paramedics had to do CPR on him). He confided in me that he was full of fear, so much so, it was hard for him to sleep. I told him (coming from my place of spiritual superiority), that “Apparently you don’t love Jesus, because if you did, that love would cast out all your fears.” It will have to go down as one of the most stupid things I’ve ever said.
Jump ahead about 15 years and I will share the next major event that I remember about fear. I was at a low point in my life. I had two back to back job failures. The first one was because of an insane boss in Harvey, Michigan. The second job I took with in Houghton, Michigan. After a great interview process and moving my family up there, and starting to build a house, I realized that my new boss was heavily involved in Medicare fraud. It was a nightmare for me. We had to stay to finish the house and then get the hell out of town, after I reported him to Medicare and was involved with a nasty legal suit. I settled on a fantastic job at Mayo Clinic, however, I was still struggling to get past these failures (and still paying two mortgages as the house would not sell having to work two jobs). It was also a very rough place in our marriage. I felt that Denise had lost all respect for me from the job failures. After, what we had thought, was a perfect marriage, she had reasons to believe that I had never loved her, and I had reason to believe the same about her.
Nonetheless, Denise decided to see a “Christian Psychologist.” She met with him for a while and then he wanted to see me alone. I’ve seen other psychologists since then, and this man was very different (in a bad way). From the first meeting he scolded me, all my failures were my fault. He also accused me of lying for example when I forgot my check book to pay him for the visit, he laughed and said something like, “How convenient for you to ‘forget’ your check book, so you don’t have to pay for my services I bet you will ‘forget’ next time too.” Then he wanted me to read a Christian book (maybe he had written it as I don’t remember) that was about “Getting to Know the Evil Inside Your” (or something like that). It was a horrible book, especially when you are already in a place of self-doubt. It talked about how serial killers often pretended to be so good while they were really full of evil. He thought I was full of evil.
A paraphrase of a quote from Martin Luther is, “I would rather be operated on by a Muslim surgeon than a Christian butcher.” That applies to this malpractice of psychology, even though he was a so-called “Christian psychologist.” But I kept going as what I though would be a service to Denise, while I felt beat down after each visit.
Around this time, through a fluke of blood tests for an unrelated problem, I was diagnosed with Multiple Myeloma (and this was 22 years ago). After having a bone marrow biopsy and seeing one of the top Multiple Myeloma doctors in the country (who was and still is at Mayo) I was diagnosed with MGUS, which is a precursor to MM, which has a 1% chance per year of converting to MM (so I had a 22% chance of this… and it happened!). This was the first time I was starting to worry about MM as a horrible disease that I never wanted to have. I have found that my fear now, toward MM, is not as severe as I had expected. Part of that reason is, the most dreaded fear of my life was some day getting MM. Now that it is here, what is left to fear?
When I told this psychologist about my test and my worry about it, he began laughing at me. He said that while I claim to be a man of faith, certainly I was not because I let silly things worry me. He then confided in me that he too had MGUS and he doesn’t worry because he knows that God will take care of him and he expects to live to a ripe old age.
In a surreal moment, I called a few weeks later to set up our next visit. To my shock, his office informed me that he was dead. Dead? It turned out that he converted to MM just like I did a year ago, however, when he went into the ER, like I did, with total renal failure as his presenting symptoms, he did not survive.
My point is, fear is a natural part of ourselves and nothing that we need to scorn. It motivates us to work toward healing and safety. The thing I pray to God for is the strength and faith to keep it under control but not to eliminate it. I pray too, despite a long course of bad news, that tomorrow will be different.
It was always an inside joke for me, from back in the days when you went to Blockbuster to rent DVDs or even VHS tapes, I would say that when Denise picked out a movie, it is always about someone slowly dying of cancer. I would also tell her that life has too many real sorrows to spend two hours of “entertainment” living in someone else’s sorrowfulness.
I am consuming books now at a remarkable pace, mostly due to harmonizing listening to books on MP3 (while reading others in hard copy) while I do house chores and other things. I’ve been going through 2-3 per week. I am trying to pick the best written books, hoping that it would help me as a writer, before my mind gets too foggy from either illness, treatments thereof, or age.
I have found a system in the Washington State Libraries for searching for books, based on their merits of good writing. I have found some spectacular ones that left me spellbound by the pure art of the wordsmithery. My latest book, which I finished during the night, was the title mentioned above. I started this book on the night last week when I felt totally discouraged. I laid my head on my pillow, lights out, ready to listen for an hour. Denise needs to go to sleep earlier than I do, so I go to bed with her and listen to my books for the first hour.
In that discouraged state, as I started to listen, the forward explained the topic. Until then I had no idea what the book was about. But it explains that it is the autobiographical account of Julie’s five-year battle and death from cancer. I hit the pause button and mumbled to myself, “You must be freaking kidding me?”
I debated in my mind if I would continue. It is like how some people going in for heart surgery want to pretend that its not happening, just to dodge the worry. Others prefer to watch a full, color, video of the procedure with close ups, over and over. I really wasn’t wanting to “watch the video” of my worst possible life ahead. However, the draw of the being nominated for Pulitzer, drew me in… besides, I had no other books lined up to listen to and I was not ready to sleep.
It is a long book and I listened to it quickly, hours per day, mostly during the night. It is certainly a deeply heart wrenching story of hope . . . hope dashed . . . suffering . . . and death. However, Julie writes beautifully and even far more candid that I do here. It is a dissection of the soul in its most vulnerable places.
I highly recommend the book, based on the good writing and the fact of how she unravels her miracle of life, and ask all the emotionally hard questions that we all should ask, but are afraid to. She arrives at different answers than I do for some of them. I am glad that I’m done with it and I will not read another book on such topics (I did read Tom Brokaw’s book about his cancer, because it is the same as mine).
However, Julie expresses so well the emotions that us–who face such a personal crisis—deal with. The one bright spot for me was how she also expresses those deeply selfish thoughts, which I wrestle with, but she expresses it more clearly and boldly than I could. I found myself even smiling at places.
For example, there is the health-envy that I must deal with daily. The author describes going to a mother’s get together (she has two young girls). The other moms don’t know she has stage IV colon cancer, yet. But one of the other moms is beautiful, well-dressed, and beaming of health. It made Julie so angry that she fantasized about beating the shit out of the woman. It of course wasn’t the woman’s fault. But I wrestle with this same attitude at times. Just ask Denise, when I see someone running, especially if they are near my age, I mumble “bastard” as they pass by. The same is true when I hear of people’s plans of exotic travel or retiring to Europe (that had been my dream). She makes the statement, “While we are familiar with the saying that youth is wasted on the young, I now also believe that health is wasted on the healthy and life is wasted on the living.”
Julie also describes, several times, her imaginary hatred for her husband Josh’s next wife. They were only in their early 40s so, she assumed that he would marry again. In her more sober moments, she also expresses that of course she wants him to re-marry for his happiness and to give a mother to her daughters, but that rational wish does not blunt the emotional rage of her life, the one that she worked so hard to create as a wife and mother, being stolen by an unknown stranger.
First, I don’t know how much time I have… maybe months, maybe years, and if I am really, really lucky, a decade or two. I may know more about this next week. I don’t know if Denise will remarry, and it is really none of my business. But I have told her, mostly to be funny, who she cannot marry (like old boyfriends, body builders, or a doctor). I have also said, mostly to be funny, is that I want her to marry a real loser just so it would be a constant reminder to her that I wasn’t so bad.
So that’s may take on this wonderful but deeply sad book. I have to now get it out of my head as I still carry a flavor of sadness from it. I also need to stop writing these Ramblings so I can get back to my final editing my own novel, Christina Athena; The Girl with the Headaches
I never meant to do updates this often. Maybe I should switch to Twitter . . . may God forbid.
There are 5 measurements to set the boundaries of MM. Last time I shared the very discouraging news that one of them, the bad protein, was still high and we were expecting zero. I have one new measurement and it is better. It is the M spike (which is a direct measurement of the expression of the cancer gene). Mine is down. It is still abnormal, but it is the same as it was 25 years ago, when this marker showed up on a routine blood test for something else and I had to be worked up for MM. This number doubled in January and stayed double until my stem cell transplant. So the transplant has done something besides torture me almost to death.
My anemia is slightly better with a hemoglobin of 10 now. I am thankful it is moving in the right direction.
My white blood cells are still dangerously low, but, very slightly improved this week. Ironically, and sadly, my brother was just re-admitted to the hospital with a very low white blood cell count. He is dealing with leukemia and is often in worse shape than me.
I want to apologize for the post I did yesterday. While everything I said was true, and I waited 24 hours after I got bad news to let the emotions settle down, I think I still posted from a very discouraged and raw place. I know that I am struggling with depression over all of this.
My latest book, and I’m trying to read or listen to two per week, came to me as an award winning nonfiction recommendation per the search engine I use to find audible books. I did not know this, until I started listening to it, that it is the true story of a woman in her early 40’s who had terminal cancer. I don’t know her mental state at the end, but in the beginning, she felt that it was important to have two personas. The first was the one the public saw, which she wanted to project as a confident, fearless . . . “I’m gonna kick cancer’s ass” attitude. But the other one, was the real her and she worried constantly and deeply about the tests numbers, the ones that were telling her if she was going to live or die. The real her was also quite–but reasonably–depressed. The real her was no better off than me.
I don’t want to create two personas, one with a smile and “correct attitude” toward the world, fate or God, and the other one the real me. But with that said, I will try to process information for a few days next time before I try to write.
For me, the rational me, I find it beneficial to not just pray, but to meditate, to try and relax, and to do research. I trust the numbers (statistics), which can’t be applied at the individual level, but can give hope to the hopeless. I reviewed the other treatments this morning and the over-all hope that I can make it 4-5 years, at which time I do think a cure will be available.
I immediately am praying that my red and white blood cells will increase so that I can function better, that my bone marrow biopsy will show minimal or no cancer (we already know cancer is there somewhere because it is still making bad protein) and that the low dose chemo will keep it at bay. Thanks for all your kind words.
P.S. I don’t write these (last time) sob stories as “comment bait” or for pity, but it is my personal venting. Maybe I should type it up and burn it.
Cliff’s Notes Version: I got my first labs back yesterday, it was to measure the bad protein, which is produced by the cancer. Unfortunately, it is the same level as prior to the stem cell transplant.
I debated in my mind if I wanted to try and give an update now or when all the tests are in. I decided to report what I know now, because Multiple Myeloma (MM) is such a complicated disease and when you share several data points at once, it can get very confusing.
As a reminder, MM is a cancer of the plasma producing part of the bone marrow. There are several different types of proteins that make of the plasma and MM can involve any of those or sometimes more than one. These plasma proteins are the building blocks of our antibodies, for fighting infection. This cancer causes problems, including death, with it either spreads locally like other cancers, (being inside the bone this usually causes fractures) or, like in my case, where the protein is produced so rapidly that it gums up other organs, such as the kidneys. My cancer involves the plasma cells that produce a specific protein, Lambda Light Chains. Those are notorious for killing the kidneys as the first symptom.
My cancer staging (and seeing how well the stem cell transplant worked) work up includes measuring the amount of these cancer-generated proteins, looking directly at the bone marrow to find cancer cells, and doing a full body MRI to look for places the cancer could be expanding locally.
The thing that we had hoped for, with a stem cell transplant, is that there is NO signs of cancer whatsoever. That is called a “stringent complete remission” and is as close to a cure as we have. Some of these people live more than 30 years without a relapse. This was our hope and prayers. Unfortunately, I have not made the cut for that hope. My plasma protein came in yesterday, and I saw it by mistake. I was looking for a different lab value on my portal and this one popped up. The blood level of this nasty protein, the one that killed my kidneys, was about 10 times normal, and about the level it was before the transplant. Denise and I took this information very hard… devastating would be an understatement. It means the cancer is still there and active. We will not know how much until the other tests is come in. My hope is still, that the other measurements are zero. If so, then it would probably mean that we continue our current plan of restarting chemo in two weeks, at a lower dose.
If the other tests come back with a significant amount of cancer (actually one cancer cell is significant) then I don’t know what we will do. But the options are to do aggressive chemo or even consider doing yet another stem cell transplant. The process was brutal and the thoughts of starting all over is very discouraging.
It is hard for me to sleep anyway, with neurological twitching all over, bad headache when I lay down, bronchitis with a cough for 2 months, and a pounding in my chest and ears from the tachycardia, which is related to my anemia. Last night I had additional sleep hindrances of a big, painful infection on my nose (probably from my very low white blood cells) … and the fear of more suffering, per this lab result that came in yesterday. I must have hoped and prayed 10,000 times, especially at key junctures of this ordeal. So many times, the outcome has been very disappointing. Denise and I have bad news fatigue. I even sense in my doctors that they even dread seeing me because I’m such a mess. I do everything they say to do, but still, the labs keep coming back screwed up. It was certainly disappointing yesterday. We are praying for some positive news after a long stretch of bad news and I really thought these numbers would be that good news.
As I laid awake in bed last night, I began to pray that God—since He has not intervened in this process so far—would end my life now. I wanted to die in my sleep, rather than face more and more disappointments and suffering. It isn’t like I don’t love life. I adore it. I love my kids, my grand kids and certainly Denise. I have so much unfinished business on this planet. I really don’t understand those people who say they are looking forward to death (unless they are very old and frail). But sometimes it feels so hopeless and all your struggles to succeed appear to be in vain and the suffering unrelenting.
We do feel a little better, emotionally, today. But I still pray for one bit of good news, or that God would just take me home. Mike
This was supposed to be week of peacefully laying low while we wait for the results of my cancer re-staging. However, once again we find ourselves in the middle of a medical crisis, the fourth such problem since I’ve been home.
About five weeks ago, for reasons we still don’t know, my bone marrow just stopped making red blood cells. I became quite anemic and had to have two units of blood just to function. That helped, but since then I’ve been quite anemic, which greatly constrains me and makes it very hard to exercise to recover or even to function.
Yesterday, with a routine blood test to follow the anemia, has discovered that the anemia is a little worse, my kidney function is a worse (after improvement last week), but the new crisis is that my bone marrow seems now to have stopped making white blood cells. My absolute absolute neutrophil count (one of the best measurements of white blood cells) has dropped from 2400 two weeks ago, to just 200 yesterday. This is considered an extreme low count and very dangerous.
The great frustration is that neither the dropping red blood cells nor the dropping white blood cells are a typical complication of a stem cell transplant. We don’t know why this is happening to me. While the low red blood cells greatly influence my quality of life this sudden and severe drop in white blood cells makes me very vulnerable to overwhelming and potentially fatal infections. To complicate matters, my hematologist is leaving town for ten days after tomorrow. We did do a bone marrow biopsy yesterday, which may shed some light on the why but I may not know the results for two weeks, if I don’t get into serious infectious problems by then.
There are days, like today, where I feel it must not be my destiny to survive this cancer. I have worked so hard, only to have my efforts erased by unforeseen and even bizarre complications. I do want to live. I want to keep fighting but sometimes you become so mentally fatigued that you just want to give up. Denise and I both need some kind of break in this nightmare that never seems to end.
Please pray that these cells would be produced again and that this problem will be solved.