I am very frustrated these days and find this discussion board to be a great resource. I was diagnosed in November, and been on Gleevec since then. My CBCs have been responding well, but of course I am still dealing with the side effects of the drug. Nothing too major, but it is still a constant reminder in my life.
Last weekend at a 10K (I didn't run, just supporting friends) I was with one of my friends and someone passed by with a T-Shirt that said "I'm running for a cancer cure!". A little tongue in cheek, I said for my friend's benefit... "Thanks!" He was confused and when I pointed out the shirt he said that she wasn't running for me because I don't have "real cancer". My jaw hit the floor. I didn't even know what to say. He tried to back track by saying that it wasn't serious because I am doing fine and there is no tumor to cut out. I really just had to walk away, at which point he got mad and said I was overreacting and should educate him if he was wrong. I just didn't feel like sitting there telling him about night sweats, constant bathroom issues, "hot flashes" for a 39yo man, and the daily chemotherapy pill. When I relayed the story to my partner later, he even thought I was overreacting a little.
A few days later I brought it up again to my partner trying to explain how insensitive they both were, and he thought I should see a therapist or support group because i was having trouble dealing with this. Then he went on to tell me how on one Sunday when I didn't feel good and spent the day sleeping and curled up in bed all day that he was so upset because he couldn't fix this. I should remember that he's dealing with this too. Again - my jaw hit the floor.
Anyway, sorry for rambling; I have seen similar posts on this site, so I know that well treated CML is a blessing/curse. It just comes with a lack of understanding from friends/loved ones.
Here's the really stupid part... I got blood work today, and while my RBC and WBC are below normal, everything else is on track. I was briefly a little disappointed because at least if I had bad CBC levels then maybe it would prove that I am still dealing with this. But I know that's insane thinking.
Thanks for listening, and always being here!