Re: New Patients & Old

[Guest guest]

Oh Lottie

You do make me smile - thanks!

love and light

Annie

>

> To Barb Hundley,

> You said earlier that when you had your other BMA's you sang to the techs

who were performing it. What did you do this time and did you get the Versed?

We all want to know your outcome. Heaven only knows, but this could be

interesting. LOL

>

> __________________________________

> To Cogan,

> If you never went to heaven, you don't know what it is like. If we never

had the

> opportunity to go to OSHU, then we wouldn't know what it was like. That's

about

> as close to heaven as you will get, but when you think of logistics, that is

pretty

> far away for most of us to travel - certainly too far for us to drive. From

my experience and perspective, on clinic days, I was at MDACC for 10-1/2 hrs.

They were moving everyone who had a flight to catch ahead of us, because we were

staying there. That was to see Dr. Talpaz.

>

> I never had to wait that long to see anyone else. Bobby says she never has to

> wait for Talpaz in Michigan, but that place in comparison to the size of MDACC

is incomparable. Remember the saying, Bobby, everything is bigger in Texas and

maybe that includes waiting time. I have heard 2 other people who referred to

MDACC as a zoo. I think it is because it is so large, it is overwhelming, but

you get used to it, you really do. For the amount of people that cross the

threshold every day, it is an amazing institution. Just thought I had to root

for the home team here, even though they are not the Ducks. LOL By the way I

want to thank you for your intelligent and accommodating information. YOur

responses are so useful to even us old timers. I am still learning because you

all are willing to share. My hat is off to you.

> ____________________________________

> To Danny,

> I am glad you had a positive experience. You should post the

appointment

> dates you have and if someone else will be there, you will have the

opportunity to

> meet someone from the group and I can tell you that is an exhilirating

experience.

> There is a website called www.mymdanderson.org where you can go and look at

your records for your next appointments and you can leave a message if you have

a question about it. Not sure about all the features, but you may want to look

into it.

>

> It is also a good idea to ask for a copy of your appointments at the desk in

the lobby as soon as you arrive, to see if any of your appointments have been

changed without your knowledge. Sometimes there are errors or the times have

been changed. Here's for more good experiences. In this SKI trial, they call

my name almost immatdiately after I sign in. I check with them before I go for

my BMA to see if the doctor is in. The oncology nurse usually can tell you when

he is expected and will tell you whether or not you should go and get your BMA

first if he is running late. Things move so quickly, I don't have time to eat

lunch, so I bring a snack, sometimes from the cafeteria and carry it in my

briefcase. We are usually done by 1:00 o'clock and head out to our favorite

Chinese restaurant. Then we are free for the rest of the day to go for a nap or

meet with friends.

>

> What drug have they placed you on? I think I welcomed you to the site, but I

wanted to thank you for participating and being a part of our dialog. This is

how we learn and I think you will benefit from it as well.

> ___________________________________

> I don't know about the rest of you, but I am anxious to see the first t-shirt

come off Barb's press. She has suggested that we double the price of the

t-shirt and donate to LLS and it can be a tax deduction. Now why didn't I think

of that, I used to have a tax business.

> If anyone has no Zero number, we can say you are a member of and donate

to LLS, or something to that effect. Please post your thoughts about the

content and design. It won't happen without all of us cooperating.

> ______________________________________

> To Cheryl,

> I don't know where you receive your treatment, but I am sorry you were treated

badly by the doctor. Maybe she was having a bad hair day, so we should give her

the benefit of the doubt. If it happens again, it may be time to talk to her by

hand or find another doctor. I am trying to talk the talk and dump my

oncologist of over 14 years. That's long enough to feel like a step child and

made to wait unnecessarily because of an old grudge.

> ________________________________

> To Sandi,

> Congratulations to Robyn achieving PCRU, I'm sure Zavie will be sending her

number, too. What a wonderful achievement to have in one's pocket. That's

about as high as you can get in this CML world. This means she will probably

have a lasting remission and not have to worry about falling off the band wagon.

Wish her luck for all of us.

> ___________________________________

> To Zavie,

> That would be in a perfect world full of perfect people. Unfortunately we

run across a few dogs who think they are people. LOL

> ___________________________________

> To Joyce,

> Thank you for the congratulations, it was a long wait. You noticed all the

zeroes, did you? I was wondering if anyone had noticed. LOL You are always

welcome here and thanks for your input when you do write. You are so right, you

don't have the disease, but as a caregiver, you must sometimes feel captive. I

don't know how Jimmy manages to stay in the house with me all the time. Right

now he's in the kitchen preparing dinner. Our hats off to all the caregivers

out there.

> _________________________________

> To everyone in the group. Does anyone know anything about Kay " Tweety " . Her

emails are being returned, so I am afraid something has happened to her, she

would never cut off her email without letting someone know. As some of you may

know, she was a very sick puppy, so if she is in need, we would like to respond

any way we can with a post or phone call. If anyone knows anything, please let

us know.

>

> THE END,

> Lottie Duthu

>

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