Living in the Present

[Guest guest]

Dear Neal,

What you say is certainly true. We who have had CML for a long time have learned

how to live with the disease, however. We are grateful for the newer drugs, but

they are still not a cure. On the other hand, how many of the serious diseases

like Parkinson's, Muscular Dystrophy, etc. are curable? Not having a disease

that is dibilitating is a blessing in disguise. If you have a choice, ask for

something chronic. LOL I think it is really funny when people say I " look

good " , I don't know whether that is a compliment or a sigh of relief that I

didn't die when I was supposed to. LOL

I think what I miss most is the energy I used to have and I loved having my

family over and cooking. Tonight my granddaughter told me she was coming over

so I could teach her daughter how to make my spaghetti sauce. I'm glad I

prepared it in advance, because they arrived late and she had her 3 children and

grandson with her. I made a gallon of sauce with meat, and sent her home with

that huge pot. They cleaned up the kitchen, but I was so worn out, I lay in my

recliner and slept for 2 hours. I would do it again in a heartbeat, but it is

exhausting to prepare those big meals, or even small ones.

There are still a lot of things to be thankful for and I find I think of CML

less and less, so it gets better with time, unless you have ghastly side

effects. I've had my share of those and have been off CML meds since April. I

don't know what it will be like when I start again. It will be from square one,

as I have lost my CCR that I waited so long for. I don't worry about whether I

live as long as someone who is PCRU, but I am at peace with my status quo,

because I have had to live with CML for 14 years before I got to CCR. Zavie,

for instance has had CML for a long time, but he is PCRU and I have lived with

CML longer than him, so there is no raw data that says he will live longer than

me. If there is, I'm sure he will come up with it. LOL

Happy Wednesday,

Lottie Duthu