Update: November 25th  

As I mentioned before, for the cancer victim, their lives are marked by a sequence of pivotal moments where information will be disclosed that tells them if they are on a path to a horrible death or have some hopes of recovery and many years of living. It is the roller coaster ride from hell. It can start with a first biopsy report,  bone scans, or monitoring blood tests. It takes a huge amount of spiritual/emotional effort to live in some level of peace in this life. It has been my experience that those who say, “Don’t worry, just give it to God and he will solve your problems,” are; 1) usually people who have never lived through something like this and, 2) are the first to abandon you when things go south because, your situation of having a bad outcome, does not fit their tidy paradigm of a prosperity gospel.

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With those things said, tomorrow is one of those pivotal days. It is shaping up to be a very busy day. I start with early morning labs, then see my oncologist, then see a neurologist (out of town) as a new patient, and return to Anacortes for chemo in the afternoon. What’s at stake are three big things. The first two will be determined by my labs and include my renal function and the level of evil cancer-producing and kidney-killing proteins in my blood. The third issue is if the neurologist can help me.

Labs

The last time I got labs, two weeks ago, my tests showed a decline in renal function (after months of some improvement). It was a mixed result as some renal tests were the same or better, but the crucial ones, creatinine and potassium, were elevated. This has put a dark cloud over my life since then, even though I’ve tried hard to deal with it (I had to have a few crying sessions when I’m alone). You see, I have an intense phobia about going back on dialysis and I’m just a mouse’s whisker away from that. When dialysis is combined with my type of cancer it severely limits your lifespan to months. But that isn’t even the worst part. When I was doing dialysis my quality of life was zero. It made me feel horrible 24-7, to the point, that I would rather die now than to return to it. I know that dialysis makes some people feel better, but it is not true in my situation. So, there is a lot at stake in those labs. I pray for a good outcome but try and prepare for the worst. I am doing everything I can possibly do to help my kidneys. My diet is incredibly restrictive now, no animal products including meat or dairy and avoiding the 90% of the vegetables and fruits that have a lot of potassium. I am basically left with oatmeal, soy, and kale and that is no embellishment.

As mentioned, we will also be checking my evil proteins again to see if the chemo is continuing to lower them. I think the last time they were 140. Below 26 is the goal. I started out in January around 3200.

Neurologist Visit

Trying not to be redundant, but clear, my first symptoms, roughly one year ago, were neurologic. I was suspecting that I had ALS and had even told Denise around last Thanksgiving for her to start preparing to be a widow. The neurological symptoms worsened in December and I made an appointment with my family doctor, which was not available until January. I was not in a big rush as I knew that ALS had no hopes of treatment but was a death sentence. Never in my mind did I suspect renal failure as the cause of my neurological symptoms as I had no typical renal failure symptoms.

Once I was diagnosed as being in serious renal failure and was started on dialysis, we expected the neurological symptoms to resolve. They did drop a couple of notches (like I was losing the ability to swallow and that improved), but the original symptom of fasciculations (muscle twitching) has not. It is my dominate symptom now that the anemia has improved as has some of the chemo side effects. I have had a hard time relaying to people, especially my doctors, how serious this twitching is. Some react as if it is funny. It is not. Only at the Cancer Care Alliance did anyone take me seriously. They had me see a psychologist to help with the stress of the constant twitching and we tried magnesium supplements and two different medications. None of them helped.

I don’t know if you have ever had a muscle twitch. About 30% of people have them rarely. But try to imagine having 10-40 muscles twitching, 24-7. If I am walking, I don’t sense it as much. But when I am sitting or tying to sleep, it is very pronounced to the point I feel at times that I’m about to go mad. I cannot count the sleepless nights I’ve had because of the overwhelming twitching. On more than one occasion, if I had had a gun, I think I would have used it on myself in the middle of those nights, just to stop the twitching. That’s why is also so frustrating to have medical providers shrug their shoulders or to try and make some joke about it but to do absolutely nothing to try and help me.

Having worked my entire career in neurology, read all the papers, and having talked to three of my neurologists friends, I realize that maybe nothing can be done to help me. There is very little written about what I have. But there are a few things that could be tried to help if someone would help as it is unethical to write prescriptions for yourself.

I deeply solicit your serious prayers and thoughts for these issues above. I will add that my brother Gary is more ill than me right now with a form of leukemia and is being re-admitted today for intensive chemo.

Then the Good News

I saved the good news to last in this posting because I have the sense, when I put it first, a few people only read that part and say to me, if they see me, “I read your blog that you are doing fantastic.” But the good news is that my exercise tolerance is continuing to improve. Just a couple of months ago, I could not walk from the house to the car without being very short of breath. My heart raced all night long. On Saturday, I climbed Mount Erie, the 1100-foot mountain on our island. I did it slowly, but made it to the top and back down again with a round trip of 5 miles and 800 feet of altitude gain and loss.

Gratitude 

I am grateful for the progress I’ve made. If I had just a bit more energy and exercise tolerance, if the one day of week of diarrhea (from the chemo) would stop, (I was having it every day after my stem cell transplant), and if the neurological symptoms were gone, I would feel I was back to normal.

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Me at the Summit of Mount Erie on 11/23/19

I am grateful for Jerry, Kevin, Jean, and Diane, who always sincerely ask me how I’m doing . . . and then pause to listen to my answer. There may be others that I’ve forgotten to mention.

I am always grateful for Denise (and my kids) sticking with me and loving me, when there isn’t much left to stick to.

I am grateful for my readers here, who my reading and following, tells me you care.

Mike

 

 

 

17 thoughts on “Update: November 25th  

  1. You and your family are always in my prayers. You describe so well how it is with cancer. You help me everyday. I wish so often I had words like yours that would touch and help. You help all the stuff in my head and give me a better something. ❤️EffieJo

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  2. Climbing Mt. Erie is quite an achievement for you and your furry partner. Thank you for enduring and reporting. Among many, I sincerely appreciate it. You’re part of my Thanksgiving. Prayers continue.

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  3. Mike, prayers are said daily for you and Denise. I hadn’t seen your blogs in a couple of weeks so it was good to read this one again even though the news was not all good. I’m amazed how far you can walk. I’m sorry for all the other crap you have to go though. I have had muscle spasms in the middle of my back and they were very painful and drove me crazy, so I can relate a little bit with you. I can’t imagine my whole body doing it’s own movements without my consent. Have you tried a weighted blanket? Hugs.

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  4. Hi Mike..I have been absent here not because I stopped caring but because I’ve been dealing with some sad events in our family. One..my BIL unexpectedly died of a heart attack and two I had to make the decision to put one of our very special pup’s of 13 years to sleep. (Yes I realize a dog is not the same as a person..but he was family) Riley had been dealing with seizures since he was 7 months old and heart issues since he was 5. The meds for the last few months started to affect his kidneys and I had him on an oatmeal blend with very little meat. I just want you to know I haven’t stopped caring about your welfare. You and your family have remained in my prayers and I will continue to hope for good news for you. I’m happy to hear there is some and I hope these upcoming tests are positive. Meanwhile..here you are a year later with another Thanksgiving approaching. From the outside looking in, I see reasons to be thankful in your family..I hope you do as well. I hope you can continue your passion of hiking and much more in the months ahead. Happy Thanksgiving to you and your family!! As a side note..I did purchase your new book and I hope to get to reading it very soon.

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    1. It’s always good to get a progress report, if only to know you’re alive and kickin’ well enough to put thoughts to keyboard. It’s amazing that you and Greta scaled Mt. Erie and back down – I know it doesn’t compare to many of your former achievements and exploits, but seriously, a substantial number of Anacortes residents are likely not well/fit enough to accomplish that!
      You, Denise, and your family are in my prayers daily. Triple prayers for a good day tomorrow, and some new solutions suggested by new eyes and brains!
      ekb

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  5. Hi Mike, thank you for your update although I did see your pic on Facebook of Mt Erie and was so excited you made it to the top. That had to be an exuberant celebration for you and Denise. I will be praying for good news on your labs this week. That is a huge burden to carry. Hopefully you will have some encouraging news, especially going into the holidays. Hopefully you’ll have some of your family with you. I have a very good friend that has seen a neurologist that we both know, and several others. She has some of the same neuro symptoms as you, but has not found relief with meds that help yet. Maybe somebody out there that reads your blogs might have a naturalistic approach that might give some relief as medical drs. seem to be at a loss. 🙏🙏🙏

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  6. Mike, you put me to shame with your physical activity! Every day is a struggle to just get out of the house while the sun is still up (I’ve slipped into my natural nocturnal cycle). I can’t go much more than a mile or two at a time due to a pinched nerve acting up (I literally limped to the polls Nov. 5), and my knees. And I have to rest afterward, but not short of breath. Still go dancing Fridays, but mostly resting in between 6-10 spins for the night. “Hoping” to make the drive to the UP this Xmas…a trip I didn’t do last summer due to fatigue. But it’s the only family I’ve got, and my mom is turning 93.

    I can relate to the maddening twitching. Not chronic for me, but several isolated incidents spanning many years…absolutely drives you nuts when you’re trying to sleep. Usually I just give up and watch TV to try to take my mind off it…nothing seems to make it go away, not massaging, not movement…just two nights ago, my right ring fingertip became numb, and that little thing drove me nuts, too…had other isolated incidents of that in the past, too…but mainly it worries me that I’m developing MS or RA or some other autoimmune illness in addition to the PSC + AIH. I can’t imagine having so many muscles twitching ALL the time! I also get the “pivotal date” thing…had a few of those myself, not with nearly the immediacy/gravity of yours, but nonetheless foreboding…like summer of last year, a nodule showed up in my liver, warranting a CT guided dual biopsy…thankfully benign, but I can’t shake the sense that my body is booby-trapped…

    I haven’t yet read your most recent “Ramblings”…but the header on this one got my attention. Thank you for the candid update. Will remember you in prayer (from the dentist chair, losing a bunch of teeth)…I also ask my church small group to pray for you from time to time…and some of them have asked for updates about your condition.

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