I used to have a pretty fast metabolism. Despite a propensity for sloth, accompanied by an appreciation for dining, fine and otherwise, I never managed to get too overweight.
Until I stepped on the scale April 9 and felt the planet tilt in the direction I was leaning.
I had not weighed myself since January 31 and had, much to my horror, gained one pound a week. I now weighed more than I ever had in my life. At 6 feet tall, my Body Mass Index was 29.6 -- just .4 away from what the charts define as “obesity.”
Those charts put the high end of acceptable, "normal" weight for someone of my size at 184. Since my diagnosis with CLL in 2003, my weight has generally been in the high 190s or low 200s. Not perfect, but not way out of line, either. I was merely “overweight,” not even close to “obese.” My grandmother, familiar with the famines of old Russia, would have approvingly called me "zaftig."
Now, at the rate of a pound a week, I was heading down the slippery slope. I was threatening to get Jerry Springer Show big, Discovery channel documentary beached-on-the-bed big.
And the funny thing was, I hadn’t been eating more than usual. February was not Cheese Appreciation Month. March Madness did not come in the form of ice cream with a red licorice chaser.
But my clothes had been getting tighter. A long time ago I had reluctantly gotten myself used to size 38 pants, and now the prospect of 40 was looming. Size 40, which brought to mind images of the Stay-Puft Marshmallow Man, was a psychological barrier that I refused to cross.
The good news, as I stood on the scale, which is located next to a treadmill, is that I felt good enough to do something about it. This ability to exercise, which I had once taken for granted, had been closed to me for most of the preceding 13 months. Autoimmune hemolytic anemia, or AIHA, had robbed me of my red cells. There was a time last fall when merely walking up the stairs was an accomplishment.
But thanks to my R-CVP chemotherapy, which commenced October 22 and ended December 3, I was in a good remission that has, like a fine wine, only gotten better with age. Indeed, on this month's CBC, my red blood count, hemoglobin, and hematocrit were all in the “normal” reference range for the first time since January 2007. My ALC was stable at 12,000. My lymph nodes are not coming back, as near as I can tell.
So the numbers tell me I’m feeling more energetic, and my body has been telling me also, despite the additional pounds. It was time to start exercising every day, and also to eat more wisely. I began that very night, April 9, and my weight is now 212.
Some of you may recall that, when I first went on high-dose steroids and Rituxan to combat the AIHA in March of last year, I lost 20 pounds in nine days. I was at 184 before I knew it. As the steroids were tapered, the weight loss stopped.
I assumed that a lot of what I had lost was CLL from bulky lymph nodes, as well as body fat. But much of it was no doubt muscle, which is often one of the first things to go when people are put on high doses of steroids. And I was on high-dose steroids more than once last year. This year, as I was feeling better and able to do more, I began to notice that my thigh and calf muscles were considerably weaker than they had been before all this began. If I squatted down in front of the refrigerator to get a carrot out of the vegetable crisper, I needed to pull myself back up by holding onto the kitchen counter.
And then I ran across a fact that might explain why I was gaining weight while not eating any more than usual. For every pound of muscle you have, you burn 50 calories a day. If I had lost, say, 10 pounds of muscle in 2007, I was burning 500 calories less each day. And, you guessed it: Taking in an extra 500 calories a day will cause you to gain one pound a week.
Now that I know the game, I can play it. My goal is nothing short of weighing 184 or less, and of gaining back the muscle I lost and more. I am enjoying the exercise, which actually helps me feel more energetic. I am also enjoying eating less, and more healthfully. It may take a long time to reach my goal, but this is a lifestyle change, not a diet.
This is also a life-affirming act, for it is the start of preparations for the stem cell transplant that I expect to face in the not-too-distant future. Being in shape will help me avoid comorbidities -- such as heart problems, diabetes, and obesity itself -- that have been shown to reduce one's chances of transplant success. It will also help me weather the experience more easily. For example, if I am given a drug such as cyclosporine, which raises blood pressure, it makes sense for my blood pressure not to be high to begin with. Thanks to the new regimen, my blood pressure is already dropping.
So when I’m on the treadmill, I’m running for my life, literally. Or at least walking fast.
5 Years Since I started on Ibrutinib for my CLL (chronic lymphocytic leukemia) in a Phase 1 Clinical Trial at Ohio State - May 5, 2017 marked 5 years since I swallowed my first 3 capsules of PCI-32765, now better known as ibrutinib or Imbruvica. I still take 3 battleship grey ca...
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