Update:4/14/2020

Short Version: My new chemo was approved today.

Long Version:

A week ago I reached out for prayer and thoughts about two issues, one being my renal function and the other was getting permission to switch to a newer chemotherapy. I’ve already mentioned that my kidney function, after taking a dip in the “total crap” level, back up to the “mostly crap” level, which was good news.

I have already mentioned that the new chemotherapy (ixazomib), which in clinical experience, has much few side effects than my old one (Velcade), is an oral capsule, and may work even better in keeping the cancer in remission. The one problem is that is about $2800 per capsule and I would take three per month (previously the number I gave was $10,000 and that was erroneous information). So, it has to have approval by the insurance company. We submitted a request for the new chemo three weeks ago. It was denied at first and then we did an override.

Today was my chemo day. It should have been last week, but we delayed it for one week to see if the new drug would be approved. When I arrived at my appointment today, my oncologist said he was sorry but he heard nothing from the insurance company. We had a long debate about the pros and cons of waiting yet another week without chemo.

I have about 4-5 major symptoms that interfere, sometimes greatly, with my quality of life. Of those symptoms, 3-4 are directly related to the chemo and when they are bad, they are miserable. I dreaded getting another injection of Velcade today. However, skipping yet another week would increase the risk of my cancer coming out of remission. We finally agreed to get my regular infusions.

I was sitting in the chair, labs done, prep meds (steroids) given, and my chemo being ready to inject and the nurse handed me a piece of paper. She said, “This just came in for you.” As she literally was getting ready to give me the Velcade, I started to read the letter, which she had handed me. It was from Regence and it said, “Your Ixazomib has been approved for 12 months. After that time a new request will need to be made.” I was able to say, “Stop the music” (in a way) and the injection was deferred. So, the gold-plated capsules are on their way.

There is no guarantee that the new drug will not have bad side effects or that it will work, but the odds are in my favor with it.

On Other Topics:

I was thinking about writing a Ramblings about all the bad news that we hear as we get older, but some people would see it as doom and gloom. Often, I don’t mean things to come across that way, but some readers put attitudes in my head that aren’t really there.

There is so much I’m thankful for. I am still thankful that I’m off dialysis and I thank God every day for that. I said last summer, when I still had the dialysis catheters in my chest, that if I ever got off, I would dance naked through the streets of Anacortes. It was so awful for me that if I had one pick, to end the cancer or end the dialysis, I would have picked the dialysis. Now that Anacortes is doing its social distancing thing like the rest of the world and we can wear masks in public, it would be a good time to do the dance. We will see.

We are all dealing with the bad news about living in a pandemic. But that is not unique to human life. Most of the time humans have either been in terrible wars or suffering from untreatable infections that wiped out entire families.

My personal bad news this week came from talking to my brother, Gary. He started dealing with bone marrow cancer before me. Actually, his hematologist called me December 2018 and asked me to be a bone marrow donor for him. I said yes, but I knew it wouldn’t happen because I already knew I was very sick, but had not been to a doctor yet. I talked to my brother this week. He has fought this terrible disease for about 3-4 years and now he is grave and they are stopping treatments. I lay awake feeling his fear.

Gary and I were fighting brothers. I won’t get into the details but he also fought with my parents and both my sisters. So, we have never been close. But we have talked on the phone on a regular basis for the past year, often sharing notes on our treatments. Pray for him, for God’s comfort.

My aunt Helen, my father’s sister, was like a mother to me, literally. We lived in the same house for a while, but even when we didn’t she was at my house almost every day taking care of me. She is 92 and has been an insulin dependent diabetic for 50 years. I’ve always worried about her. She did suffer a stroke about 7 years ago that completely wiped out her short term memory. Two days ago, a bigger stroke happened, taking out her ability to talk or walk. As you know, the trouble these days with COVID-19 and social distancing, my sister, who cares for her in Jacksonville, cannot see her so she is alone, confused in a hospital. She took care of me every time I was sick before I left home. She took care of my father when he was ill. She took care of other people in our town, and then she cared for my real mother for over 20 years. But now, none of us can care for her and she has to suffer alone. Life is unfair.

I have a friend who is, once again, in battle with her cancer. Unless she’s a better person than me, and I’m sure she is, these battles bring a lot of fear. As I said before, having tasted severe suffering, it is the suffering I fear the most, not so much death. I don’t want her to suffer.

We have another friend who has cancer. She is young and a total health nut. They thought they had cured her cancer last year, but now its back and all over her. “My The gospel of a Lessor god” was “inspired” by her and her plight.

Another friend had to be airlifted off our mountain today. I watched this play out, thinking it was a rock climber being rescued, which happens once or twice a year. But it was her heart. She is okay for now, but just another snippet of bad news.

I lost two nephews a few months apart and I see how much my sister (the mother of one) and my brother and sister in law, and niece (the parents and sister of the other) suffer emotionally.

I share things because they are on my mind, but I don’t think for a moment that they are unique to us. Bad news and suffering are woven into the fabric of the human condition. We pray for God’s peace for all.

I know that everyone who comes here have these hard things in your life. I think talking about them makes it a little easier on everyone. May God grant you peace in your troubles.

Mike

Published by J. Michael Jones

J. Michael Jones is a writer and PA who lives in Anacortes, Washington. He is the father of five children, who are now grown and out discovering this wonderful world on their own. He has previously focused his writing on non-fiction including medical topics and issues of the philosophy of Christian thought. With the success of his last book, Butterflies in the Belfry, Michael is now moving into fiction with his first novel, The Waters of Bimini.

5 thoughts on “Update:4/14/2020

  1. Good morning Mike,
    I love the news that you get to try the new med. I don’t know about Anacortes’s laws but when you do the dance down the middle of the street, maybe have your clothes on? Just a thought. But then again, life is short so wiggle that naked body if you want. I sorry to hear about your brother and your aunt.
    When I was a child I remember my mom going to funerals and not crying. I didn’t understand how she could not cry when it was so sad. Now that I’m old I too go to funerals and don’t shed a tear because I know the person is no longer suffering mentally or physically. It is very difficult to watch someone live in pain. Death is a miracle. Everyday I miss my sister who died from cancer fourteen years ago. She was my best friend because she had a great heart and was crazy fun. Oh, she was in pain and I was blessed to be at side when she passed into the spirit world that I imagine is beautifully simple. Mike, I agree with you that watching someone suffer is the hardest thing to do. I have so little power over so many things.
    Enjoy your day,
    C

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    1. I have heard others say that death is a miracle or a “gift” and in many ways I don’t agree, although there might be a point (which I will make) where we do agree. I’m not sure how you are using the word “miracle.” If is like what Albert Einstein said, (my misquote) “Either everything is a miracle or nothing is” then I can see calling death a miracle as everything else is. What he meant was either there is a creator that made this entire universe so therefore everything in it is super-natural or a miracle, or there is no god, so therefore nothing is a miracle. I came to the conclusion a long time again, way before I became ill, is that they only way that suffering and death made sense was that is is not natural, but a curse. That we were created for a healthy eternity, but this curse has brought us suffering, pain, and death. As a Christian, I also see that we were destined for this physical earth and in the end, God will repair it, take away the curse, and we will live in this new earth forever. I know that a few of my pantheist friends see this material earth as sewer like place, that we must spiritually transcend it to find happiness and there are those mystics that took Plato’s teachings that this earth was inferior to a better place and that we should long for that better place. To me, that is a slap to the face of God to call what he has created as inferior.

      Now, where we might agree and this could be what you are saying, is that times, death can be the lessor of evils as compared to suffering. As I have prayed many times over this past year, “God please help me, take away this pain, or take away my life as I can’t live like this anymore.” But I still see both disease, emotional abuses, and death, as all a curse that we fight against as long as we can, and by struggling against this is not fighting God.

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  2. Good morning mike Good news …Amen Your writing today really hit home for me. So much sorrow – I pray daily. 🙏🏻 Prayers for the new drug You will be starting… for your brother…. for your aunt…… for us all. Take care. God bless you and thank you for sharing your writings. I think of you often – miss the good days when our lives were intertwined. Please say hello to Denise. Sending warm hugs and prayers Believe ❤️Ann. Sent from my iPhone

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  3. body{font-family: Geneva,Arial,Helvetica,sans-serif;font-size:9pt;background-color: #ffffff;color: black;}Thank you Jesus!love d and j

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