J. Michael Jones

Once again, to break from the trend a few months ago, I have mostly good things to report.

I was able to take a 5 week hiatus from chemo due to my cancer being in remission. During this break, my side effects from the chemo, which were getting way out of hand, slowly improved. I went from 4-5 bouts of urgent diarrhea per day to now once or twice a week. My peripheral neuropathy has likewise improved.

On Tuesday I resumed chemo and this time we went from a one drug (Velcade) to a four drug regiment. The purpose of the four drugs is to not only work even better to to mitigate the side effects of the Velcade alone. So, 48 hours later, things are going well. One of the add-on drugs is a high dose steroid, which causes insomnia the first night but I did get at least five hours last night. If the side effects return, we will have to petition the insurance company to allow me to switch chemo to something totally new.

Probably the best news is that despite spending two weeks of traveling, where my strict renal diet was very hard to follow (it is much easier to control your diet when you eat alone), my labs were almost exactly the same. My kidneys are still crappy, but I was expecting them to be worse. This may sound trivial, but it is very liberating being able to expand my diet from just bland noodles and oatmeal to things with taste.

My evil proteins (which the cancer produces) came in this morning and were almost exactly the same as 6 weeks ago. I was expecting them to be worse because of being off chemo.

My oncologist, on Tuesday, said two things that left an impact on me. First of all he called my labs “great.” I had not seen them yet and his point was just what I had shared above, stable. He also said, when somehow we got off on to death again, that “Mike, you are not going to die from Multiple Myeloma but we are going to turn this into a chronic, manageable disease.”

I am feeling so much better than I was a few months ago. I would call how I feel as normal if it were not from my pretty severe anemia, which reduces my endurance. But I do my third climb of Mount Erie this week. It is brutal for me (4 mile round trip with about 1200 feet elevation gain and loss) and I’m passed by younger, healthier people, but it is getting a bit easier each time. I did out-pace Greta this time, who pooped out near the top.

Yes, I am in the very high risk category for COVID 19 virus, or influenza A because of my transplant and cancer. I am taking precautions. However, I do feel my immune system is much stronger than three months ago, when I was constantly fighting bronchitis and skin infections. However, I will follow my team’s advice and avoid public places.

My son, Bryan, just did an interview on Minneapolis community TV. He has a PhD in biochemistry and is working on the technology that very well may be what saves me in the end (CAR-T). I will post a link to the interview here.

I am continuing to write on my novel Ristretto Rain. Writing is such a passion of mine and I feel that this next novel will be my make or break point if I can continue, so I’m taking it very seriously. I had several people here agree to review an earlier manuscript and since then I’ve completely rewritten it twice and will continue to do so, until I have it dialed in. For some writers, they have “writer’s block” where they just can’t think of where to go next. My problem is I’ve always had “writer’s diarrhea” where words and related story branching constantly flood my mind. I get so lost in these stories that I forget what is real at times. Sometimes I think I see one of my characters on the street, and then I remember they only exist in my imagination. This is a gift and a curse as I get too wordy and too complicated in my narrative.

Lastly, tomorrow I have a meeting where we will make one last attempt to resurrect my career in headache medicine. Taking good care of patients is the easy part. The complexities of creating a place to do that is the hard and expensive part. We will see where this goes.

I am sorry about taking too much time here. I will be posting less about my disease now that things are stable and hope to remain so for the future. To come here and share details about a stable problem would lend itself to melodrama and I want to avoid that. Thanks so much for taking this journey with me until this point, through many months I (and my doctors) really thought I was dying, and at the same time I was feeling so bad that I was afraid I would not die and end this nightmare once and for all. Now I have a some hope that I will see another year.

Mike