bonnie

March 27, 2004

Re: Bonnie

Please note my new e-mail addressis now ebs77x@.... Please send the

SLL-CLLedu mail to this new address

thanks

edie

> Bonnie - is quite right - as I said in my first reply to you,

doubling

> time of white count and lymphocytes is an important measure - these would

> likely be tied to increases in node size, as that is where these guys wind

up -

>

April 2, 2004

Hi Bonnie - I do not think you have been misled - It's a crazy disease, and

some people can indeed go for years with no treatment, or even for their whole

lives - My guess would be that if you are a younger patient, and have been

diagnosed, you might sooner or later require some sort of treatment - The

diagnostic tests we have discussed here are intended to give the chemo naive

patient

an idea of whether they have a truly " sleepy " disease, or whether the

prognostics indicate a potentially more aggressive variant.

Whether or not you wish to go through all this testing is a very personal

matter. Some folks are crazy to know exactly what is going on, and what their

prognosis is. Others say, lets wait and see.

And, by the way, lots of people who are chemo naive and have never been

treated. This is a very specific issues, and there is no cut and dry answer.

Lately, some folks, especially if they have had diagnostic tests which

indicate a potentially aggressive disease, have opted for Rituxan, or for

Chlorambucil. Others wait, no matter what.

Personally, I never had any diagnostic testing. 4-5 years ago it was not yet

very popular. I put off treatment as long a I possibly could. Finally, I

became so anemic that I had no choice.

Always good to get second and third opinions, but it's your call.

Best of luck,

April 3, 2004

Hi Bonnie - that's an easy one

An oncologist is a doctor who deals with all cancers. A hematologist is a

subset, and deals with blood diseases, and blood cancers. We have a blood

cancer.

A hematologist would be like a specialist to us. Sort of like if you have an

ear ache you can go to your family doctor, or go see an ear-nose-throat guy.

I agree with (I think Kurt), you should get an expert opinion.

For your info, I see one oncologist (because he first diagnosed me) and three

hematologists.

August 21, 2004

Dear Bonnie,

Did you write my medical prognosis? We are very similar in symptoms and time frames.

You have a great attitude and it perked me up! Thanks!

Amy

October 5, 2004

Bonnie,

What a great time you had! It's so wonderful that you were able to do your

breaths, and all that walking! You got benefits for sure. I'm so happy you're

back.

Kiki

April 18, 2005

ohhhhhhhhhhh I wouldn't want to be around when dear sweet Rashelle protects her

family. I bet you would put the proverbial mother tiger to shame dear one LOL

I can just see you!

We had a man in church who had a bag for his colon? I forget what it's called.

Anyhow, when he would come into church...sigh, yes this happened in a church

which we do NOT go to any more...people would literally shove down the pew so

they wouldn't be " near him or touch him " . You could see the bag sometimes and

sometimes he wasn't as " clean " as others. He was an older gentleman who was

alone in the world. It used to make me see red. My husband was even worse!

One day we got to church late and there was this dear man sitting in the pew

with probably 3 feet of space on the other side of him. My husband grabbed the

kids hands and determindedly marched up the aisle and excused himself to the

man, then all but shoved us all in. I had the honor of sitting next to him and

one thing I would never have known was that this man had the most beautiful

singing voice. He could no longer read (I'm not sure he ever could) but he knew

all the hymns by heart and would sing quietly along. Oh what a blessing that

was for our family. We left the church a few months later, but not before we

were blessed to not only get to know this man but he became a regular at our

Sunday dinner table.

I always wonder what other blessings I've missed over the years because I've

been thoughtless or uncaring, you know?

warmly,

Jenni

Proud Air Force Mom!

May God guide and protect our troops!

RE: Beautiful Flower in a Broken Pot

When my father was towards the end of his life, his head and face were a

mess -- frequent removal of skin cancers (coupled with blood thinners, which

impeded clotting) had left his (bald) head and face scabby and frequently oozing

blood, and a bad case of seborrhea dermatitis capped it.

He also had only one leg, and was thin beyond imagination. He was totally

incontinent, and sometimes didn't smell all that good (which was always

immediately rectified, my mother took marvelous care of him). He shook pretty

badly....you can probably get the picture....

Dad loved to go places, and was really hurt by people's comments. For

example, once he was sitting (in his wheel chair) at a mall, and a young child

was chatting with him -- the child's mother grabbed her kid and pulled him away,

saying (rather loudly) " you just don't know what someone like that'll give

you.... " Another time we took him to his favorite restaurant, and a woman

commented (again rather loudly) " that people like my father ought to be kept out

of the public, they ruined others' meals... "

At no time was Dad unable to understand these comments, and he was never

disease ridden (so that he could pass anything to anyone) -- he was just very

old and his body was falling apart.

Since Dad passed away, I've gone out of my way to try to talk to any person

who looks incapacitated -- young and old -- and the smiles and blessings I've

received are marvelous. I particularly try to make over the occasional child who

might be truly ugly (deformity in the face type thing) -- I wonder how often

these children have adults cooing over them....

Sorry for rambling on and on, but this story of Rashelle's hit a tender spot

with me -- I wish more people would be kind to people such as these..

Bonnie

April 18, 2005

Churches aren't always what you expect -- Dad went to communion one day, and his

(artificial) leg fell off -- the usher ran up to him and rather than help him,

he started berating him for disturbing the " flow " to the communion rail!!!

Dad absolutely refused to go back to this church -- and towards the end he and

Mom simply watched the services from a TV broadcast.

I've always hoped that individuals there weren't that heartless -- but it is

certain that no one other than Mom helped him get his leg back on and leave the

church! (this was before the wheel chair, and he had to wear the leg to walk).