J. Michael Jones

A tactical pause is when an army, in the middle of a battle, stops fighting to regroup, check on supplies, and to reassess their strategy. This is one of those points. While there many things I am thankful about, I will mention the difficult things first and get them out of the way.

As I posted several weeks ago, the most direct look at my cancer, bone marrow biopsy and “M spike” came my relatively low, suggesting that I’m in a partial remission and holding. I did have my routine labs 4 weeks ago that, to my disappointment, showed my kidneys doing worse (after doing much better the previous month) and my bad proteins heading up. I will have labs again on Monday, so we will see where those are at.

I did loose my brother Gary two days ago. I may come back here and write some thoughts down. Yes, I can say he is out of his suffering now and he has suffered for 3 + years. But still, the whole thing, cancer death and suffering are a tragedy.

Although we shared bunk beds growing up, Gary and I were not close. He was seven years older than me. But for some reason, when I was born he became very jealous and tormented me until he left for Vietnam. When Gary became ill, we reconnected, even before I became ill. After I was sick, we spoke weekly on the phone about the similar symptoms we were experiencing. I am very sad to have lost him. Cancer is garbage.

Here are some good things that I am deeply grateful for.

I’ve talked about my neurological symptoms some here, but never exhaustively because you would think I was embellishing. That’s what many of my doctors thought because my syndrome was so unusual. But practically every muscle in my body was constantly twitching. My tongue was twitching, my mouth, my eyes, all my skeletal muscles, inside my abdomen was twitching so hard on the outside it looked like a huge bag of moving worms. It felt that way too. The closes thing that it resembled is found in a condition called benign fasciculation syndrome. That condition does not cause death but suicide is high if it persist. It is what brought me to thoughts of suicide at least twice (along with everything else). We assume it was the product of living in renal failure for a couple of months. Anyway, it never went away but came in bad cycles up to a month and then lower cycles for a few weeks. I am hesitant to say anything, but after 17 months of this nightmare, the down cycles are getting lower and lower. I’m in a down cycle now and I can go as long as 5 minutes without the twitches. Before, the best it ever got was dropping down to about 15 twitches at a time. But now, there are those moments when I have none. It gives me some hope that they will eventually go away as no treatment has helped.

I never knew how tough the mental health battle would be. I mean, besides the cancer and facing death, the getting laid off from my job, going from a busy career to nothing, then in strict quarantine was terrible. I was so lonely through the spring, that I started to have those thoughts of just asking God to take me off this planet. This is why my writing is so important to me.

I have been blessed to have my son Ramsey get tested for COVID and come home to live with me for two months. He is leaving soon and I dread what is coming. However, Denise has changed jobs and will no longer be working these 60 hour weeks.

Lastly, I have struggled to get good care for my cancer. The problem is, Multiple Myeloma is a very complex disease. As one cancer doctor said, it is like a bundle of about 15 different cancers, each type of Multiple Myeloma acts very differently than the others. My oncologist admits that he does not know what to do with me. I had tried to got back to Seattle for care, but due to COVID they were not taking “new patients.” However, now I have a two day appointment in Seattle at the end of September and I hope to re-establish with Multiple Myeloma expert who can help me get on the right path.

Denise and I had a long awaited vacation planned this week. I’m on an oral chemo so I can travel better and she just quit her job. It was going to be a two week road trip. It was a good trip, but I hate to say this but people bugged the hell out of us. I’m not talking about friends. I’m talking about insurance companies, banks, her work, people I had scheduled to do work for us in a couple of weeks, the list goes on and on. But we were in a remote place (east side of Mount Rainier) with spotty phone reception and no internet and everything was urgent to them (or my chemo would be canceled or my insurance cancelled, our refinancing of our house would fall through, tree trimming will be cancelled, blab, blab, blab). Can’t we ever have a moment of peace? So, sadly, after four wonderful days we gave up and came back home. We had also forgotten our tents as people were also bugging the hell out of us when we were trying to leave. So sleeping in our car without a tent was another factor for coming home. This our first day back, I’ve spent most of the day on the phone with pharmacies and insurance, banks and tree trimming companies trying to untangle messes that they’ve made. The tree trimming company had scheduled with me the week we were to come back and I had told them I was out of town. But somehow their scheduled opened up and as soon as we were out of town, they wanted us home to trim our trees and kept calling and leaving voice mails that it was urgent we talk. Anyway, it is almost 2 a.m. (I did chemo today with steroids which keeps me awake) and I’ve vented. But mostly, I want to focus on the good things above. And they are good. Mike

(battery is dead must post before I loose this and without proofing)