Having a good mom

[Guest guest]

Dear Bobby,

I have met , Annie's son and I can tell you he dearly appreciates his

parents. Annie back then was more the patient than . She felt

everything, it was as though she had CML. She wanted to shield him from

everything and felt the pain and all the angst that goes with it, rather than

let him know all about what CML entailed. She wanted him to lead a normal life,

so she vicariously carried the CML burden, while he went about his life being

the " normal " person. She now feels he is at a safe place, so she can rest

better at night. She feels everyone's pain and as a caregiver knows how

difficult it is to deal with a disease like CML, especially when it is your

child.

You, for the most part look normal, but it's what you can't see that is the

culprit. At first we wondered why we were perspiring so profusely, bruising or

what were those little red spots under our skin, why were we so tired, and on

and on with the sublities of life. It was something else that drove us to the

doctor's and if a blood test was done, we were advised that we should come back

and take another test a week or a month later. I don't think anything prepares

you for the shock. If the disease is so rare, why is it happening to us? Some

people are lucky enough to find a doctor on the first try and the medicine works

so well, they are not even thinking of a second opinion. On the other hand,

somethimes you find that you are not responding and the search for a specialist

begins in earnest. Why do some respond and others do not, even when there is no

mutation? I have been asking that question for a very long time and I am still

waiting for an answer.

It's like a hen who just laid a giant egg she doesn't want, she can't send it

back from whence it came, but has to confront it. The only thing we can do is

to live life as normally as possible, take care that you not contract infections

and to take your CML medication religiously, do not play Russian roulette with

it. Another suggestions is to learn all we can and to make contact with others

in the same situation. Help others and share what you have learned or ask

questions if you don't already know the answer.

Hope you had a nice weekend. It warmed up a little, but I stayed indoors. My

shucked oysters and I prepared Oysters Bienville and shrimp in a cream

pasta sauce. I think we ate well today. Started yesterday with the chopping

and the sauce making and finished it off today. We enjoy it so much because

it's not often that I prepare it because of the work involved, it's all from

scratch. Those are 2 separate dishes, by the way, although it sounds like one

dish. Oysters are rare since the oil spill.

Take care, Bobby and may you be one of the first to declare that you are

cured.

Carpe Diem,

Lottie