Right track

[Guest guest]

Yes Eva, you are on the right track. Just make sure your doctor stays on it

with you. LOL.

It is not surprising that we have these bumps in the road when we are first

diagnosed, your body is adjusting to the new drugs and has to find a way to

" flush out " the old phillies after they are killed off. That sometimes causes

pain in your shins and joints. I may not be PCRU, but I know that the drugs are

working, just a bit slower than everyone else's. Among all of you, I know I am

in good company, because we are in a position to share our journey with each

other and each one is different in the way we handle CML, either physically or

psychologically.

I knew a man who never accepted it, screamed at the doctors and nurses and

gave his wife such a hard time that when he died, she was hospitalized for

months. He thought he knew it all and because the doctors at MDACC were

foreigners, he didn't like the idea and thought they were all stupid and didn't

know what they were talking about. I never understood how his wife as a nurse

allowed him to go along with that archaic mindset and try to convince him that

these were some of the finest doctors within reach of him. A lot of people live

too far away to be able to see a CML specialist and he turned down the

opportunity to see what was out there.

I know locally they were not up to date on the latest trials, so he

received no encouragement from them. Unfortunately, his personality got in the

way of his own recovery. It took every ounce of strength I had to force myself

to go to his funeral, because I knew he never got a " fair shake " . It also shook

up my own faith about my own mortality and I questioned how much longer before

I would follow him. I have learned to never compare myself to anyone else,

because each case is unique. The other lesson I learned is to educate myself,

because they knew nothing about the new drugs and to try to hang in. I was

saddened to learn that when they complained about MDACC, the local doctors

agreed with them. If a doctor feels threatened because you want another

opinion, then he is not worth his salt. Please share with us if you feel you

are know a similar story.

Blessings,

Lottie