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.
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.
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.
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.
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.
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.