LEUKEMIA TALK

In discussing my leukemia with a friend the other day, she asked how the battle with the Gleevec is going. I thought I ought to share my answer with everyone who follows me.

The Gleevec effects are very distinct and I usually don’t have any trouble identifying what is attributable to Gleevec. Even so, the symptoms are inconsistent although some aspects are somewhat predictable. One of the most readily identifiable symptoms is the strong nausea. It usually comes within an hour or so of taking a dose of Gleevec but it is not every day. Let me clarify. The strong nausea is not every day but a prominent amount of nausea is nearly constant. It’s made worse if I eat a lot of protein, go without eating for too long, or eat too much. The tolerance amounts for these are inconsistent and hard to guess. Then, there are the times that I’m strongly nauseated for no detectable reason. It has always taken a lot to get me to the point of vomiting. That’s good and bad. The good is that I don’t spend much time running to the bathroom. The bad part is that the nausea can make me quite ill, sometimes wishing I would vomit. However, when I start vomiting my body often doesn’t seem to know when to stop!! That’s no fun; I’d rather have the nausea for which anti-nausea medication does help some. When I take pain medication for my arm, it also adds to the nausea and to the feeling of the vomiting tipping point. Yet, while I battle nausea, there are so many on Gleevec and other chemotherapeutics who VERY miserably reside at the commode. I’m not complaining.

Weakness and a washed out feeling is another Gleevec-induced symptom I deal with. You know how some days you don’t feel like getting out of bed or getting off the chair to walk twenty feet to get a glass of water although thirsty? I feel that way about all the time. That’s where I push on the most. So, I keep going whether it is to meet a friend for coffee or run some errand that could have waited. I know I can’t afford to stop.

The other major Gleevec symptom is muscle cramping and marked muscle tightness. The less activity I have the more it bothers me. However, if I do too much then it really bothers me. My upper thighs are the worst although my upper hamstrings are a close second. Massage and moderate activity is the best thing for it. Dynamic stretching helps a little but generally not enough to encourage me to do it!!

Over the past six months I’ve slept a lot better than the previous year. Even during the roughest times with my arm, the totally sleepless nights have been much less. That is a blessing. Sleepless nights, in which I pace in pain, kind of messes me up for several days. I attribute much of being able to sleep better to Eileen massaging my legs. It takes just enough tension out of system to allow me to relax. I often fall asleep while she is massaging. I don’t ever seem to ask to get my legs massaged; I suppose Eileen innately knows when it would be helpful. Periodically, my legs are just too sensitive to even touch though.

All in all I’m doing pretty well and thankful to presently be in cytogenetic remission. I’m not nearly as strong as I was a year ago but I don’t feel like I’m losing ground as fast as I was. It seems that I’ve grown a bit old for my age, but I probably would have felt that way anyway!!