Author: J. Michael Jones

Summary: No, I’m not getting off dialysis anytime soon.

Well, you know what say about good news and bad news?

A few weeks ago I put here and on Face Book that my nephrologist called me and said he was ready to kick me off dialysis. I said then, it did not make sense (and my day job is a medical provider and I have been personally following my own labs in a spreadsheet). Yet, I wanted it to be true so badly, and I had to trust that he is a nephrologist and knows more about this than me.

To cut to the chase, that call was a mistake. No, I’m not getting off of dialysis anytime soon. But it was as simple mistake. My labs at the dialysis center are usually drawn prior to dialysis. The labs he saw that day, which were almost normal, were done after dialysis. That is a huge factor!  He saw labs which were reflecting my blood toxin levels after dialysis had just finished cleansing my blood. He assumed that they toxins were that low because my own kidneys were doing so well.

The above was not a surprise to me nor is it devastating. Like I said, as medical provider, I was dubious from the beginning (I’ve had some people accuse me of being “negative” when I doubt stories which are too good to be true). Yes, I’m disappointed. I regret posting this information on Face Book because so many people have assumed that my kidneys are better and that I’m off dialysis. I know they mean well.

I was very disappointed when I got this mornings lab results. It had been two weeks since we did labs. I was hoping and praying my heart out the numbers would have dropped. They were about the same as they were two weeks ago. If I had been a woman, I would have gone home, closed the doors and had a long crying session. But since men are not given that license (and I know that I reflect my generation) I had to swallow the tears and see patients. That’s how disappointed I was. Finding good news is like trying to find a clear spring in the Sahara. You grope and are sometimes disappointed with a mouth full of sand.

So, for now, forget that there was any hope I was getting off dialysis today, but do keep praying to that end.

So, where’s the good news?

My nephrologist is still hopeful that I can get off dialysis. He wants me to continue to be patient. If you follow my labs over the past two months, my kidneys are moving very, very slowly in the right direction. He will also keep me on “Dialysis Lite,” which is two days a week for three hours.

I will mention one more bit of good news. I have this awful constellation of bad neurological symptoms, which we assume were caused by living with acute renal failure for a month or two (prior to diagnosis). While most of those symptoms have had very little progress, one of those was a very fast resting heart rate. That problem suddenly went away about 10 days ago. It resolved overnight. It tells me that there is some healing in my nervous system and hopeful it will start to show up with resolution of other symptoms.

My next big event will be the results of my protein electrophoresis, which will tell us if the chemotherapy is working to suppress the cancer. I will get that information on Wednesday.

The last good news is that this is a no-chemo week. Last Thursday – Sunday, I felt as bad as human can feel from side effects. Today, I’m already starting to feel much better. Mike

I was going to wait until tomorrow to do an update, but I’m doing this one now to solicit prayer. Tomorrow will be a big day. I go to the lab early and get my comprehensive labs drawn. Those labs are the first done in two weeks and will tell me how I have done on 1/2 normal dialysis for the past two weeks. Those labs will also tell us how the chemotherapy is working, although that part won’t be back for several days.

After the labs, I will go to work for a couple of hours and then meet with my nephrologist.  I have not seen him in six weeks. The last contact I’ve had with him was when he called me two weeks ago saying it was time to kick me off of dialysis. I was shocked. Of course I want to get off, but my lab tests have not supported ending it. My kidney function is about 1/3 normal ( estimated GFR of 17-25 and normal is >60 ). The studies I’ve seen says you don’t try to kick someone off dialysis until they are at 50% of normal. But I trust the nephrologist. Maybe my labs will be better in the morning.

As I have said before, it would be huge if I would get off dialysis. Again, it is not just the inconvenience of it, but not being on dialysis would greatly enhance my ability to fight the cancer. My oncologist has suggested that they may not do a stem-cell transplant if I’m on dialysis and a stem-cell transplant is the only hope for beating this cancer, and that is only for a few years. So, I cannot over-estimate how much is riding on the conversation in the morning.

It has been a discouraging time of late and some good news would be greatly appreciated. The discouragement has come from severe reactions during my last two weeks of chemotherapy. I just completed my third round and it seems with each round the side effects are getting worse. Each week I have three chemo drugs on Monday. Those go well. Then I have drug # 1 in a second dose on Thursday. Each of the past two week, Thursday night through Saturday have been hell, with a partial recovery by Sunday. It is like the flu from hell with total body pain, chills and explosive diarrhea. But one of the most discouraging things is that this terrible sickness ushers back in the constellation of bad neurological symptoms that I had when I was first diagnosed with renal failure and my toxins were sky-high. I felt this week that I’ve made no progress.

This coming week will be a break from Chemotherapy and my hope is that I can recover . . . and that I learn that I can end dialysis. That would lift our spirits.

Thanks so much for the 15 + people who showed up for the garden-raising party. I realize that you gave up a beautiful Saturday, just for us and that will not be forgotten. We got a lot done. I wanted to take a lot of photos, however, by the time I got back from dialysis and saw the workers, I lost track of my plans to capture the event. Here is one post-garden-raising photo.

We will work on putting up the fence next Saturday. Mike

 

More Photos:

 

 

From the day that I was suddenly diagnosed with cancer in January, we have had an outpouring of people who have—with great sincerity—wanted to help us. We have been deeply grateful for that show of love. However, there was very little practical help we needed. Watching our dog, preparing some meals, all were a godsend in the early days.

But now, we do have a very practical need and that need is of tremendous values to us. Denise, having grown up on a dairy farm, has for years had great pleasure in gardening. It is her favorite hobby. The therapeutic value of a garden to her is hard to over-estimate. We moved to our new house a year ago and there has never been a garden space here. Giving up her garden at our old house was very difficult for her.

If you know anything about gardening, besides having good soil, having a rabbit and deer-poof fence is essential. I promised that I would build Denise a garden when we first purchased this house. Now, with my cancer having as much impact on her as me, having a garden for her to seek some normalcy would be of tremendous value.

Building a garden from scratch is a lot of work. I have worked to the full capacity of my physical being over the past few weeks, trying to prepare for this. I’ve planned the details, cut and hauled timbers. I have carried concrete bags, wire, built gates and etc. Denise has worked hard to prepare her soil. The one thing that I cannot do is to put in the posts because I don’t have the physical strength and due to the dialysis catheters in my chest that prevent me from raising my right arm.

We have planned on having a garden building party for several weeks. We have had several people volunteer to help. Yesterday my “volunteer foreman” BJ look over the project. He was a little concerned that we could get all the posts in, in one day. So, I’ve decided to post this here, that if you have time and are interested in joining our work party, you are welcome to make a spontaneous appearance.

This Saturday, March 16^th, the work will start at 9 AM, with others coming at 11 AM. Denise will provide snacks and lunch, I will be in dialysis in Oak Harbor and can hopefully join you at noon. If we have enough people, I think we can get the posts in by 2 PM.

Our address is 12961 South Wildwood Lane, Anacortes, WA.

https://goo.gl/maps/3TCFMon5yar

Next Saturday, March 23, we will be putting up the wire and plank fencing to finish it off and we will need help then as well.

Thanks again for all your offers of help.  Mike

 

About twenty years ago, or more, I was living in Marquette, Michigan, on the shores of Lake Superior. One day I had a message from the front desk of our Internal Medicine office. One or our patients wanted to get the report of her recent CT of her chest. She had lung cancer and was following with a local oncology clinic. Our practice was her primary care home. Why she was calling us for a report of a CT scan, which was ordered by her oncologist, was not clear, except that I think the oncologist was out of town, and if I remember right, it was a Friday. I wanted to do my best to help her.

Mrs. Clarke (obviously not her real name) was put on hold while I came to the phone. I looked at her scan and radiologist’s report and studied it very carefully, prior to picking up the phone. I wanted to make sure that I got the story straight.

I picked up the phone and punched the flashing button. “Hello Debora, how’re you doing?”

She answered in a very nervous voice, “How’s my scan?”

I always try my best to put things in the most comforting tone when I explain tests to patients, trying not to under-estimate any real concern. I also try to talk about abnormal tests face to face, but this situation didn’t allow that. I explained to her, “The radiologist has compared the tumors to the previous scan and, overall, there has been some reduction in the total size of them.”  I was getting ready to say, “It appears that the treatment is working, but you need to discuss it with the oncologist when you see him.” However, as soon as the words, about the reduction, came out of my mouth, Mrs. Clarke burst out in tearful delight. “Praise God, he promised He would heal me, praise Jesus!”

I was staggered by her sudden response and I was afraid that I had not been clear. “But Mrs. Clarke, the tumors are still there, but they are smaller and that’s a good sign.”

“No, God promised me that He would heal me, and he has.”

She may have been so transparent about her spiritual perspective because we attend the same church (and it was a relatively small city). However, I suspect that her enthusiasm was so overwhelming to her, that she didn’t even think about who she was talking to. After all, I did not know her that well through church.

I repeated to Mrs. Clarke, “I’m so glad there’s been an improvement, but the tumors are still there.”

“No, they are not!” she said, this time in an angrier tone. “Don’t doubt the mighty work of God!”

“You need to discuss this with Dr. Patel (oncologist) when you see him. When do you see him again?”

“I’m never seeing him again, God has healed me!”

That’s the last thing I remember about the conversation, however, soon a message came through our Church’s prayer chain that Debra Clarke had been miraculously healed from her lung cancer. I was speechless and felt like it was somehow my fault. What had I said wrong?

People in my church were so excited about this miracle, where her lung was full of cancer and suddenly, it was gone. The story got embellished (not sure by whom) that the oncologist was shocked at the results and he had never seen anything like that. Abiding by the rules (HIPAA) I could say nothing, except to corner Mrs. Clarke after the Church service one Sunday and beg her to go back to Dr. Patel. She was very angry at me and accused me of not believing God or having faith.

Sadly, Mrs. Clarke never saw her oncologist again and, as far as I know, never continued her chemotherapy or radiation. Within eight weeks she was dead. The church was shocked and her miracle, or lack thereof, was never mentioned again.

There is a gray area between hope and magical thinking. I take the term from Joan Didion’s book, The Year of Magical Thinking. She is a fantastic writer, however, this book, and the sequel, Blue Nights, wears on you (especially if your read them back-to-back) as a narcissistic journey into the world of the Hollywood Bourgeoisie. Yet, I feel guilty for even calling her narcissistic when she had suffered so much loss (a husband and a daughter the same year).

The point of her title about magical thinking is that it took her 365 days to accept the reality that her husband had suddenly died, falling over in their New York apartment. For some, reading her book is a cathartic for grief and I’m sure that’s why she wrote it.

Magically thinking, per her story, is where you live in a world your wishes create, not the world we have been given. There can be short respites of this kind of imagination, which are healthy, but it quickly becomes stagnant and suffocating if it continues. Reality does sometimes suck, but to deny that reality or to delay it, carries us further from resolutions or recovery.

I am a realist. I know that in the end, the statistics are always right, and I mean ALWAYS. I know this, not because I don’t believe in a God but because I do. The entire universe is written in mathematical code. The math of the universe is the scent of a God’s order. The fidelity of math is so true, that Plato thought it must exist in a higher reality, where there is always certainty. It is so reliable that a smart physicist can stand in front of a green board, in some upper story office in Princeton, and discover a new mystery about the universe, using only a humble piece of chalk … and his or her brain. No other instruments are required.

But, within the microcosm of our own world, I don’t believe the statistics are fatalistic. Maybe we are predestined by God or our genes for the final outcome, but I sense that there is place for hope of changing what could have been.

There are lots of statistics about my Multiple Myeloma and paths of possible outcomes. I’ve studied them well. You can breakdown what I have into sub-sub-sub types, each with their own predictive outcomes. But when it comes to my own world, the statistics has limited meaning. As I have said before, I had a .04% chance of developing this god-awful disease, and I did. I now have a more than 50% chance of finding a remission for years and a small hope of a cure within my lifetime. The statistics of my renal recovery is more grim, but there is still hope.

So how does one live within the reality of what is, but still have hope of beating the odds?

I have so many people praying for me and for them I am deeply grateful. I do believe that prayer can, in a mysterious way, change the odds in my favor. For many other people, they have given me “good thoughts.” I am deeply grateful for that as well, because I understand their intent while I’ve never understood what the hell that means.

I don’t think my attitude determines my outcome. I’ve never seen a medical study that said if a patient thinks positive, they will do better. I don’t want to think positive in a magical-thinking way. I do want to believe in prayer and doing what I can to shape my own destiny. I do this by studying my disease, the treatment protocols and making the best choices that I can.

Of course, I want to live. Of course, I want to be free from the terrible symptoms of renal failure that plague me daily. I want to be free from the neck pain may cancer has caused and the side effects of chemotherapy. I pray constantly that God would deliver me from this nightmare but that He would also spare me from the trap of the magical.

 

 

 

 

Summary:

• My Creatinine today was 3.6 and my BUN was 26. This is promising (about getting off dialysis) although not a slam dunk. Time will tell and more labs will need to be done in one week. Don’t be confused, no, I’m not off dialysis, but on a reduced schedule and no, it is not being stopped . . . yet. Keep praying!
• I’m in round three of chemotherapy. This week, things have been rough and, based on how I felt, put me back to almost the worst I have ever felt with this disease. I think the reason was getting 3 vaccines, doing my typical 3-drug chemo, and then adding a new, bone-building, infusion.  All of the above list “flu-like syndrome” as one of their top side effects.
• The next big event is getting my labs a week from today, which may be the final word on if I can get off dialysis or not at this time. On that same day (4/18/19) I will get my next labs to tell me how the cancer is responding to treatment. Those results will not be back until about 4/21/19.

Details:

I completed my first week of “Dialysis Lite,” which is my term for reducing the time on the machine from 4 hours down to 3 hours and from 2 days down to two. So, I went down—by steps—from 12 hours per week to 6, so by half. As listed above, my creatinine today was 3.6 and my BUN was 26. As a reference, when I was diagnosed, my creatinine was 15.5 and my BUN was 125. Normal for creatinine is .6 – 1.2 mg / dl (meaning milligrams in 10 ml). Normal BUN is 7 – 20 mg/dl. Reminder, these are the two toxins related to protein waste, that my own kidneys have not been filtering well.

Today, I got my first labs since started this new program. My last labs were on 3/4/19 (last Monday). It was done after a week of three days of dialysis at 3.5 hours (the step-down from 4 hours). My creatinine at that time was 3.9 and the BUN was 33. So, the good, or maybe great news is that toxins were lower after less dialysis, which tells us that my kidneys are trying to function. It would have been nice if the levels were normal, as that may come.

The stretch from Thursday to Saturday was some of my roughest days so far. It was discouraging to be two months into this disease and to feel so much worse at this point. But you have to remember that the purpose of chemotherapy is to suppress the disease and save my life, not make me feel better. The only thing I have to “make me feel better” is a little plain Tylenol. But I think I felt so badly this past week end was because, 1) I had two hepatitis vaccines and one pneumonia vaccine (dialysis center protocol) and each of those were making me feel bad, 2) I had my routine chemo, 3 drugs on Monday and 1 on Thursday, and they always cause a flu-like syndrome. Then, on Thursday, I had a 4-hour infusion of a bone-hardening drug, which can cause a flu-like syndrome. It is a precaution as MM often dissolves the bones, causing “pathological” fractures.

I felt so bad on Thursday night that I started to think it wasn’t worth it. Friday was a little better and I was able to get up and to use a Bobcat, which I had rented to fix our muddy driveway. On Saturday morning I did dialysis and I was thinking, maybe I was feeling so bad because I was doing “Dialysis-lite.” Therefore, I would be feeling much better after. I did not, but felt much worse after dialysis and it continued for most of the day. Finally, by Sunday afternoon, I was able to go outside (and it was a glorious day).

This morning I worked a ½ day. I was concerned if I could, after this bad weekend. But it was a lite schedule and it went well. This afternoon I continued my next round of chemo.

Looking Ahead:

I will do dialysis lite again tomorrow, work Wednesday morning, chemo on Thursday and then dialysis lite on Saturday. Labs will be drawn next Monday to check on my kidney function and the response of my cancer to chemo. I will update then or sooner if there is anything new.

Keep praying for my kidneys to heal. As I’ve said, it is not just the inconvenience of doing dialysis, but it puts me at greater risk (I was sitting in chemo with a lady with exactly what I have. She is a retired nurse. She chuckled and looked at me and said, “You know that multiple myeloma isn’t going to kill us, our renal failure is.”). Having to do dialysis may disqualify me from getting a stem-cell transplant, which would greatly impair my chances of survival. So this is important, please keep praying.

Denise is doing well, but not great. You can’t imagine the toil on her. We are having a garden-building party on the next two Saturdays. I am hoping that this will therapeutic for her. It is hard to describe how much my disease has impacted her and she needs your prayers as much as me.

Forgive any typos as it is getting late and I need to prepare dinner and I did not proof-read.  Mike

I wanted to make sure that I am clear about my kidneys. No, they are not suddenly better. Simply,  my nephrologist wanted to challenge them to see if they can function without dialysis. While I respect him very much, I was perplexed as my labs have not been that good. The main point is that my toxins, creatinine and BUN rise on my non-dialysis days. I have now missed one day of dialysis in our little trial. I will get labs on Monday and Tuesday. If my toxins are stable, then, I can get off dialysis in about two weeks. About a week after that, I will get these catheters out of my chest. I will dance if that happens.

So, I have guarded optimism. But you can pray that these coming tests are good.

I’ve continued chemo, starting my third round this past Monday. I did okay Monday and even returned to work on Wednesday morning. But then things started to go south.

I think it was the combination of things including getting three vaccines at the dialysis center on Tuesday, doing my second chemotherapy treatment on Thursday and getting a new 5-hour infusion of a bone hardening drug (MM often involves the bones causing fractures). By last night, I felt horrible worst than any flu I’ve ever experienced. The symptoms have continued today but are slowing improving. If I had to live with these symptoms, I would have no quality of life. I hope that I can return to work this coming week for two half days. But it is discouraging to have such bad days. I want to have a disease where you get treatments that  make you feel better and better, not where the treatments make you feel worse and worse.

I knew that his day would come. In the slurry of mixed emotions that percolate up through my muddled soul, anger has been one. However, it has now come to seed as a dominate feeling. I was reflecting on the timing of this progression, where fury takes roost. After-all, I am still happy to report that the chemo seems to be working and we are now testing my kidneys to see if I can get off dialysis. I am also happy to report that my energy level has increased to the point that on my good days (about 3 days per week) I’m at 60-70% of normal. Yesterday (Sunday) was my most energetic day so far, where I went to church, went shopping with Denise and ended the day with a long hike on the beach. When I came home from the hospital 5 weeks ago, I could barely walk from the car to my bed. But still, on chemo days and the days after, I feel horrible, like the worst flu of my life.

It may be difficult to grasp, but I think that anger has more texture, making it more grip-able, at this juncture, because I’m doing better on some days. It is like I think, on the good days, that I’m returning to normalcy, but it is just a taste. However, it is at that point that I must also grasp the fact that normalcy will be illusive for the rest of my life. This is not “negative thinking” but reality.

The catalysis to this realization happened Saturday (March 2, 1019). I, courageously, spent my time during dialysis doing research on life-long dialysis. Until that point, I had lived in denial, or maybe it was hope in prayer that my kidneys would heal. I handled that research rather well. Then I drove home, stopping to and picked up the mail. I saw several medical bills in the box. I paused at the end of the driveway and opened the letters. The bills contained a total of $160,000 of bills. I’m sure that tens of thousand of dollars or more bills are coming, and this is not even to think about the future bills. Now, these are not things that we have to pay. It is not clear how much we will have to pay. But at that moment, it dawned on me that I—instantly—went form a good provider to my family and contributor to society, to a profound drain to all. No one wants to be a drain. I did nothing to deserve this and it is for that I am pissed.

By the time I got to the house, I was over-come with sobbing. This is the second time that I’ve reached this point, and for the same reason. I guess that’s not too bad, two melt-downs in two months.

At that moment, a flood of “losses” paraded through my mind. I was going to list them here, but it would take pages and it would sound like an exercise in self-pity. I will mention a couple.

Exotic travel is my favorite hobby. Denise and I were planning a trip to hike across Greenland this summer as the last big adventure of our lives. I also wanted to spend retirement riding dirt bikes in Tibet or living in a refugee camp in Syria or Greece. Now, all that will be impossible. I can’t even leave our town because I’m tied to a dialysis machine and chemotherapy, which keeps me alive. That’s reality. I could tell you about 100 terrible things that came upon me Saturday, including losing the hope (save some miracle of medicine or prayer) that I will not see my grandsons graduate from high school. As I approached retirement, I was starting to make plans for the next phase of our lives. Right now, the average life-expectancy of a man in America is 78 years. I was satisfied with that. However, the fact I was healthier than most (I’m 63 and run 6 miles at a time, I eat well, I’ve never smoked or done anything that increases my risk for cancer) and I was expecting that I would live into my 80s. Denise and I were planning on growing old together. That vision is lost.

Even discussing the fact that I feel anger will make many readers feel uncomfortable. Now, (based on face to face conversations) some people are thinking, “Poor Mike, he needs to get a grip on the positive thoughts.” Or, “It is sad that Mike has such a bad attitude.” But I have some breaking news about my dilemma, I believe that God is mega-pissed too!

I think that we don’t have a healthy view of, what we might consider as negative, emotions. This problem covers all of society, and the Christian part the most. This attitude has deep social roots.

But before I take a tangential trip, and many leave me, I must make it clear that I am not angry at God. Being angry at God has never makes sense to me. If God was behind the cancer it would mean that; a) He is a Sadist, or b) He made a mistake. Both of those characteristics would disqualify him from being God. I am also not angry at any human. There are people in my on-line Multiple Myeloma support group who are very angry at people such as employers who exposed them to chemicals, doctors who missed the diagnosis, and etc. But there is no one I can blame.

Also, I must be clear that my anger is not a malignant anger, the kind of anger that defines and potentially destroys you. I’ve had that kind of toxic anger before and I will never go there again. I will move on this time and I’m assure of that. I expect that my anger will eventually evolve into a chronic disappointment, and with that I can live.

 

The Historical Perspective on Emotional Inhibition:

When I have studied history, I quickly find that it is so convoluted and complex that any summation to make a point will be inaccurate due to over-simplification. So, I will leave the Medici’s alone this time, and the Renaissance (my favorite topic) on this story as well as the standard bearers of the Enlightenment, such as Hume, Locke, and Voltaire. I will look only at the Victorian Era of the United Kingdom (latter half of the nineteenth century).

At that juncture in the history of the United Kingdom, the sun never set on British power. Things were settled. While not quite the place of the Pax Romana (the 200 years of peace of the Roman Empire) it was a short, historical respite of peace. It was during this time that the British, protestant brands of Christianity began to focus on “performance Christianity.” One Church historian referred to the Victorian era of Christianity as the “Cult of Respectability.” It was a time when more and more layers of social expectations for the Christian culture. It was when words, such as damn, shit, hell, fuck, became reclassified as “swear words” and were forbidden to be used. There were rules about what to wear to the beach, how to relate socially to one another and rules about how a good Christian man should hunt bears.

In those days, a single woman faced the same rules as a present-day woman would face in Saudi Arabia. Women were considered inferior to me in all areas of life. There were even “modesty boards,” which were wooden boards nailed along the sidewalk to make sure the woman’s hem was low enough (to cover her ankles).

It was also during this time, rules were established about what good people could and could not talk about. Men, especially, were not to show signs of emotion, any emotion. Women, on the other hand, were expected to be emotional, but decent women were not to show negative emotions. So, since we are all human and sometimes have negative emotions, starting in the Victorian era, we had to hide those emotions.

Flash ahead to the twenty-first century. Imagine a lady who is one of the leaders of the church has a Sunday morning fight with her husband. For example, she just found out that he took out a $35,000 loan to buy a boat and they were financially tight. She walks into church (using a different door than her husband) and she has a contorted, sour look on her face. Then imagine that a friend says to her, “Good morning, how are you today,” to which she responds, “I’m really pissed!”

It wouldn’t happen. She would know that we can’t express such negative emotions and she would have come in with a big smile, pretending that all was well.

So my point is, I’m very pissed that so much has been taken from me and my piss-ness may make some feel uncomfortable, but that’s too bad, because I’m still pissed.

I have already posted some of this on Face Book as I did not have access to my tablet this morning.

I was laying in dialysis chair in Oak Harbor this morning when my cell phone rang. It was my nephrologist’s medical assistant. She said, “Dr. Moss has been reviewing your labs and has decided that this will be your last dialysis. He thinks your kidneys have recovered enough to get off dialysis.”

It would be an understatement to say I was floored. Just last Saturday I went through training for long-term, dialysis options. It was depressing.

I have been following my renal labs religiously. I have a spread sheet and graphs to show how my creatinine and BUN do with and without dialysis. Those two toxins are the ones my kidneys have not done a good job of removing from my blood and they are the ones which are responsible for most of my symptoms. While my BUN did reach a normal level just after dialysis, last week, my creatinine has never reached a normal level.

I asked the MA, “Is he sure? My creatinine is still rising when I’m not doing dialysis.”

I see Dr. Moss again on March 18th and I thought that on day day would be the first time we would even have thoughts of reducing the hours of dialysis. But I was a bit discouraged at the slow process. But then his MA said, “He seems quite confident about this, but I will talk to him again.”

In about 30 minutes she called me back. She said that Dr. Moss understood my concerns but he thinks that when my kidneys are weaned off dialysis, they will kick in much better. I guess I should listen to him, as he has been a nephrologist for a few decades. He did add, to be safe, we will reduce your dialysis down to 3 hours twice a week (I started at 4 hours three times a week) for two weeks and then pull the plug unless I get into a crisis.

This is very good news and so exiting to think I could get off dialysis. You just cannot comprehend how much is at stake. Not only it is the time commitment, but it ties me down to being 48 hours from Oak Harbor. I can’t fly. I can’t visit grand kids or kids. I can never travel again, anywhere. But worse than that, I have to have these two rubber catheters in my chest that limits me in taking a shower, can’t kayak or hot tub. The tubes always hurt too and they put me at risk for a major infection. But the very worst part is that it makes my cancer treatment far more difficult and grave. For one, it very well might be that I cannot get a Stem Cell Transplant (SCT) if I’m on dialysis. SCT has the best chance of saving my life for up to 10 years. During those 10 years it is very likely that a cure will be found to the is god-awful disease.

So, I am very happy about this, but we must have guarded optimism. We cannot start to celebrate until the reduced schedule of dialysis does not get me into to trouble. Once I’m in the clear, and the tubes are out of my chest, then we can celebrate and declare victory.

The second bit of good news was that I met with oncologist this afternoon. I had already broke the news here about the levels of my bad protein have remained stable and continue to drop, although slowly. But I wasn’t sure about how he would interpreted those.

He was very satisfied that we are going in the right direction. The plan is to continue the same plan, trying to achieve near normal levels (which is below 26 and mine is now at 226, having started at 2658). My side effects to chemo have been minimal, although I still carry a lot of symptoms from living in renal failure for a couple of months.  Mike

Good News:

1. Labs: In summary, it appears my chemo is working, although my proteins are sill high. But it would have been a nightmare if it was not working. No, I’m not cured and there is no cure, but it means that I probably won’t be dying in the next couple of months, unless I’m hit by a bus. Yesterday, I didn’t know that and was rushing to finishing Denise’s garden in case I wasn’t going to be here in two months, serously.

Details:

The labs that check my cancer are back and I reviewed them this morning. Here they are in context:

When I was diagnosed the bad protein, IgG lambda light chain, was 2658.9 mg/l on 1/12/19. Normal is less than 24 mg/l. So it was extremely high (but in multiple melanoma it can be in the tens of thousands).

After doing 5 rounds of plasmaparesis (where protein is removed from my blood) and just starting chemo, my next test showed IgG lambda light chain was 246.3 mg/l on 2/519. It was impossible to know at that time if the chemo was starting to work or it was just the improvement from the plasmaparesis.

My last labs drawn on 2/26/19, therefore would only reflect the influence of chemo as the benefit of the plasmaparesis would have worn off by then. Here are those results ( I post the numbers for my kids who understand these things):

Free Kappa Light 22.9
Free Lamda Light 226.6 (normal is below 24)
Kappa/Lamda Ratio 0.1

What this means is that the bad protein has basically plateaued or even a little lower than four weeks ago by the effects of chemo alone. This means it is working. My dream would be that it would be normal as we don’t know if this elevated level is still doing damage to my kidneys. So, over all this is good news. It could have been better, but could have been much worse.

2. Kidneys: No change since my last post. I’m starting prepare myself for permanent dialysis, which I dread with a passion. Keep praying for kidney recover!

3. Symptoms: A neurologist friend did some research on my troublesome constellation of symptoms (all related to living in renal failure for at least a month). While neurological symptoms are common with renal failure, it appears that I have a unique syndrome called “Uremic Twitch-Convulsion Syndrome.” That covers most of my symptoms. I was puzzled as to why my symptoms didn’t go away after the dialysis brought my toxins back to normal. The studies show that these symptoms often don’t go away, ever. I am grateful that they are 20% better, so that gives me some hope that I will recover from these troublesome symptoms. Thankfully, I have not had the brain symptoms (almost like dementia). I am returning to work on Wednesday and so far my brain seems to be working okay. MIKE