J. Michael Jones

My labs came in just a few minutes ago. I didn’t want to waste time as my kids and family find out about my cancer here. In summary, my Lambda light chains (that is the type of cancer I have) came back as normal (22.4 mg/L, normal is 5.7-26.3 mg/L). I was elated last time when they came back near normal (27.3 mg/L), but now, it is completely normal. This is a huge positive step. My cancer is back in remission as of today and a deep remission at that. But MM is very mischievous and can stay in remission only for a few days … or a few decades.

To further illustrate how good this news is, I know of someone with MM who went on an experimental treatment, has been on it for 8 weeks with terrible, life-threatening side effects, and he found out today, his cancer is worse than ever. Can you imagine how demoralizing that would be? He is a good man and did nothing wrong, but life throws curves.

Now, to my present problem, I’ve been on a three-drug regiment for 9 weeks and for the last 5 weeks I’ve felt like Alexander (children’s story) with the Terrible, Horrible, No Good, Very Bad–feeling. It has been awful. The space of my life has been reduced to a box, not much bigger than my bed. Each morning my body throws me a new prank, usually in the form of pain and exhaustion. With that I had become demoralized. However the hope I now have, is that I can get off or reduce the drug lenalidomide, which I think is causing most of my problems. The plan that is before me right now is to stay on it, but with these new lab numbers, I hope to persuade my doctors to give me a chance to get off or lower dose.

Poor Denise, as healthy as an ox, has had her own life reduced to my space as I can’t do anything with her. She has friends that she can hang out with, but her life this summer has been squished due to my illness. If you know her and want to invite her to events in town, throw her an invite. That would help with some of my guilt.

Thanks again. I will give a brief Part C, next week when we figure out this plan.

Mike