March 20 Update + COVID-19 Ramblings

As the title implies, I’m going to combine some update on my health information with some ramblings about what is on everyone’s mind, the COVID-19 pandemic.

Good News

I will start with some good news and that is I got another lab back on Tuesday, a 24-hour urine with a protein electrophoresis. The point of that test was to look for the bad cancer proteins in my urine. While a year ago, such proteins overwhelmed and virtually killed my kidneys, it was too small of an amount to measure in this most recent test. So, in summary, my most recent cancer tests have all shown that I’m in remission, to the point that if I had walked into my doctor’s office today and had these tests done, he would have to say I don’t have cancer. However, I do. MM is notorious for appearing to go away or at least into remission and then to raise its ugly head again. For that reason, I must be on chemotherapy for a total of two years after my stem cell transplant. That means I have 18 more months.

Chemotherapy

So, this brings me to the problem I am having and that is my chemotherapy. I started out in September doing fine with almost no side effects. Over time the side effects have worsen. The best way to describe it is like having the stomach flu, but it never going away. I’ve had this since the first week of December with cramping and diarrhea throughout most days and unbearable chills.

As I mentioned a couple of posts ago, because I was in remission, we were going to take 5 weeks off and let my gut rest. During those 5 weeks I did notice a slow improvement, where at the end I was having those symptoms every second or third day, rather than every day. I think I understand much better, those of you who suffer from Crohn’s disease.

Ten days ago, we restarted the chemo plus added two more drugs to counteract the side effects. It has not help much as my side effects are growing again.

We have the option of trying a different chemo. Mine had a drop-out rate in the studies of 45% due to side effects. There is one that had a dropout rate of 2%. That one sounds quite appealing but with one catch. My drug is $3000 per shot and I get two shots per month. The new one is a pill and it is, you better be sitting down, $10,000 per pill! I have to take three pills per month, so a monthly cost of $30,000. This is insane!

This coming Tuesday we will decide what to do. But right now my quality of life is quite low due to feeling sick all the time.

Quarantine

We are all in this together. However, while my risks are much higher than most (certain death if I got the COVID-19 infection due to my bone marrow transplant, kidney failure, and chemo; plus a wife who is in the highest risk profession of catching the virus, nursing), this period of quarantine is much easier for me than I think it will be for most of you. The reasons are, 1) after my bone marrow transplant I had six months of quarantine and learned to live that way, 2) we have a lovely place, three acres, on a lake to be quarantined. If I were in town, I might go batty. Part of my quarantine last summer was in a very small apartment in Seattle and I felt like I was in prison.

As I alluded to above, my quarantine is complicated by Denise’s profession. For one, I see less and less of her and feel like a hermit now. But more importantly, she puts me at high risk for catching the infection, especially as Island Hospital starts admitting COVID-19 patients. I certainly don’t want her to get sick and there is no guarantee that she would survive if she did, but it would be a certain death sentence for me if she brought it home. She feels quite committed to being at the hospital during this crisis. We are looking at options including her moving out for a month or so, or me finding a remote cabin to live in for a while.

This year I came to terms with the idea of death. I have fought hard to stay alive for the sake of Denise and the kids, even though at times I had no desire to live because of the loss of quality of life. Even now, there are days I think getting the COVID-19 infection could be my ticket out of this nightmare that I’m living in. But it is the process that frightens me. I became acquainted with profound suffering last year and I don’t look forward to that again.

My greatest prayer is that my chemo symptoms would go away, as well as my constant twitching. Then my will to live would be much stronger.

I WORRY ABOUT YOU!

We don’t know how this COVID-19 pandemic will end. You have seen the best-case and worst-case scenarios. Right now we are living in a Alfred Hitchcock world, but under the worst-case scenario, it would be a Stephen King world. Unless you work in health care, I’m afraid that you do not understand how serious this can be. I don’t leave the house much anymore, but I took a long drive on Tuesday. I watched how people were interacting in Anacortes, Burlington, Mount Vernon and all the way up to Lake Diablo. They were not taking the precautions that need to be taken to prevent the spread of this terrible disease. For one, the key pad for typing in your PIN number on gas pumps and at cash registers is a petri dish of germs. The corona virus can live on the surface of that pad for many hours. So, if you touch it to type in your number, you are picking up germs from the last 50 customers. If you touch your face with that finger, then your goose is cooked. Wear gloves or clean that finger immediately and well with sanitizer.

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Please stay safe! Hugs and handshakes are not appropriate! Keep at least six feet apart from others and remember that the virus can survive on hard surfaces for many hours, even days.

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I feel especially bad for those of you who have lost business or their jobs over this.

One Last Word on the COVID-19 Pandemic, a Word Against the Con-artists

I am not sure I believe in a literal Hell anymore. However, if there is one, it will be a place for those who exploit others during times of crises. Hording hand sanitizer and selling it is a minor of such offense. The worst are TV preachers. Jim Bakker was selling a cure for COVID-19. Shameful! But he has spent his life doing shameful things.

Paula White, Trump’s personal “pastor,” is often on TV lying and begging for money (millions of dollars isn’t enough for her greedy soul) and now she is raising money (for herself) but claiming it is to stop he coronavirus see here. Yeah, Hell was designed for people like her.

However, the more common type of such exploitation is the, (sometimes well-meaning, sometimes not), pastor who tries to find meaning in events like the COVID-19 pandemic or even 9\11. They are totally ignorant about human history and try to tie these things to obscure prophecy. I will stop here but just to vent about this evil practice.

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.

8 thoughts on “March 20 Update + COVID-19 Ramblings

  1. Good Evening Mike and Denise, You have been in our prayers…and now thoughts as to how we might be able to help. We are the ‘elderly’ and are trying to be very careful. Grandsons won’t even come visit as they feel they have been around too many people:) Anyway, don’t know if you are aware that our home here on Penn Cove (not a lake Mike but great water views, etc…pick up your own mussels) has an apartment on the lower level. We built two ADA floors, both really self contained with the future in mind. If one of you…probably Mike…needs a place to live for a time, we truly believe God had us build this place for service. I think we are up to 12 individuals/families that have stayed here for all different reasons but there is currently no one downstairs. It can be separate completely, own entrance, etc. but we do have the pool table there and the shop. The shop has outside entrance. Full size stove and refrig but no dishwasher. Anyway, if you’d like to take a ride over and see what we have, please feel welcome and invited.

    Continued prayers and find joy in each day, Sherry and Ed

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  2. Hi Mike, Thank you for the good news on your cancer. I will continue to pray for you and Denise. I have my daughter and granddaughter living with me now because her wife works around a lot of people and my daughter is not healthy. I’m the lucky one cause I have people around me and are keeping me sane. (Well as sane as I can be :))

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  3. Very well written. Thanks for sharing your thoughts and you and Denise are always in our prayers. Margaret is taking chemo and her symptoms are getting worse especially being tired and a cold that seems to hang on. Now that volunteers have been told to stay home I miss seeing Denise.

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  4. I will continue to pray that you and your team find a chemo that “works” in all respects. And that you can keep posting your thought provoking ramblings as well as updates. Hug to Denise!

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  5. Hi Mike, I’m happy to read about your continued good fortune as far as your Cancer is concerned. I truly wish you didn’t have to suffer with those side effects from the drugs though. I can’t even believe those prices for the shot and pill..so disgusting. I will pray you can find means to keep yourself protected from Covid-19..but also pray there will be ways for you to be less isolated. People need to take this seriously. I’m struggling with my father who is 82, he is taking more trips out than necessary because he is too stubborn to change his routine. I guess he thinks just because he says he is being careful that means he is invincible to contracting this virus. But he could also bring it home to my mom. No one is enjoying this and many are scared. Yes..we are all in this together. Here’s to hoping the majority of us will do what is necessary to help protect the vulnerable and with luck or strategic measures this will pass over soon. Thanks for sharing and for keeping us updated here!

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