I've lost 10 pounds so far and sometimes I feel like the guys in the video below.
I've also trained myself to eat less -- "they" say it takes about a month to do -- and life is easier because I'm spending less time digesting. As they say in Okinawa, "hara hachi bu," or "eat until you are eight parts full (out of ten)." One thing I have noticed is that my energy level is more constant, more even, with fewer peaks and valleys. This is also in part because I am eating healthfully and have pretty much stayed away from sugar except in the form of an occasional orange. My blood glucose level, which was a little high while I was on big doses of steroids, is now well within normal. (I am currently down to one methylprednisolone pill -- 4 mg a day -- to guard against AIHA.)
There is a life-affirming element to all this, a decision to get my physical temple in order, and by extension my spiritual one. I think most of us are probably affected by CLL in a lot of subtle ways we don't consciously recognize. For me, a sense of abandon when it came to eating was one way of coping. When I was a kid and had a rough day in school, I would buy three or four candy bars on the way home and settle in for a little stress reduction, much like adults enjoy a martini after work.
With CLL this sort of thing returned at times. Marilyn and I are both pretty good cooks; we did, in fact, write a cookbook, or most of one. It was pulled by the publisher at the last minute because of a dispute with the California Milk Advisory Board over photo rights but it is apparently still "available" in Canada. We also know a fair amount about wine and are capable of whipping up a pretty decent meal to go with a bottle, with an utter obliviousness to the amount of butter and fat involved.
Good eating has its place, of course, but too much of a good thing is not so good. It is often the case that any method of escape -- be it food, alcohol, drugs, smoking, what-have-you -- only works so much before it becomes self-defeating. For me, the world of food, compounded by lack of exercise, became both a release and a trap.
So now Marilyn and I are exploring opera. It's not fattening and it's not ultimately depressing, even though the heroine always seems to die in the final act.
I've go to admit it's getting better: More good news about my CLL (chronic lymphocytic leukemia) - Most of my blog posts can be followed here. The full story of my CAR-T therapy, the incredible rollercoaster and the amazing results can be found there I...
4 weeks ago