Just a brief follow up. I was seen at Seattle Cancer Care Alliance on Tuesday. As I described, it is hard to tell if my cancer is coming out of remission because of mixed lab findings. They agree that it is not clear. We have decided to follow one value, my gamma light chain proteins (which the plasma cancer produces). It recently went up from 70 to 117. Normal is 25. If it reaches 170, then we will declare the cancer out of remission and must do something differently. We discussed options of a monoclonal antibody drug (daratumumab), or entering a study of Car-T, Bites, or Tites. One of those studies may have a treatment that could be a cure (to early to tell). The only reason I would not jump to them now, is that they have substantial costs and risks. In Car-T, they remove my own T cells, reprogram them in the lab to fight the cancer, and put them back in. While the results are very promising, the risks include sudden death and dementia.
We also did some other tests to look for metastases that could account for some of the new symptoms. So far, those have been normal. Thanks for your interest.
On Another Note:
In the early days, I wrote here a couple of articles about how to talk to someone with cancer. Actually, it applies to anyone who has gone through something difficult, such as divorce, death of a spouse or child, etc. Coming out of my initial treatment (2 years ago) I noticed how difficult it was for our society to deal with these things. It was not that people were bad or insensitive, but that something within our culture makes these interactions weird. I watched how some old friends crossed the street to avoid talking to me. I watched many times when Denise and I were together and ran into old friends and they only spoke to her and made no eye contact with me as if I were invisible. They would ask how she was doing, but never mention the “C word” or ask how I was doing. It was as if I had just been released from prison for some heinous crime. While it was painful for me, it was simply awkward for the friend and I know they meant no harm. I bet I have done the same to others, which I now regret.
Yesterday, after finishing a 3 mile run to Starbucks, I ran into old friends, Richard and Jody. I had seen them only briefly after I was released from the hospital two years ago. Frist of all, Richard called out my name, before I saw him. They expressed how happy they were to see me. Then, without ANY hesitation, no awkwardness, they asked how the battle with cancer was going. I gave them a concise answer and asked about how their life was going. My point is, it was so healthy of an interaction that it left me feeling human and not like some enigma, of which I suppose to be embarrassed. But, I’ve always have known this as authentic and caring people.
Mike
J. Michael Jones 
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