5 stages

[Guest guest]

Dear Tracey,

I'm aware about the 5 stages that we are supposed to go through and it's

strange, I skipped the first 3 and went right to the crying (depression) and

acceptance. I was never angry with God, because I don't believe in a punishing

God, and I knew if I was in the wrong place at the wrong time, I could be " the

one " and I never tried to bargain. I was just so overwhelmed with the

depression I couldn't move past it for 3 weeks. I knew it was CML and nothing I

could do but fight and there began my battle. I began to fight back with

letters and phone calls. It wasn't until I got on the internet that I really

begin to find there was a small light at the end of the tunnel. That light is

getting bigger and the tunnel is getting wider. As I learn more, so does my

faith build me up. I had a lot to learn about search engines and what

information was good and where the best research centers were. It was some time

before I joined the ACOR group, and it saddens me that very little is ever said

or done there. After about 2 years, I dropped out, I had learned about Gleevec

being trialed and I set my sites on it, determined to be on that band wagon. I

called Novartis and got myself enrolled before my doctor even knew about it.

He soon learned I meant what I said when I said I would sometimes get ahead of

him. He saw me through 4 years of Gleevec, starting out with 100 mg. and moving

up to 600 mg. As soon as he found an opening to get into the BMS trials, he

called and said to get myself up there ASAP. I had broken my foot, was in a

cast and a wheel chair. We took the back seat out of the van, threw our

belongings in and left for Houston like the Beverly Hillbillies.

There were ups and downs. I was in the trial, I was out of the trial and

the doctor said by some strange miracle, the last tests were the reverse of the

earlier tests and I had passed the heart tests. The third time was the charm.

Jumping to another subject about chest pain, I thought about the time I had

pleurisy and I am posting a website here about pleurisy to see if you can find

any similarities to the pain you are having, .

http://www.healthsquare.com/ndfiles/nd0405.htm

Blessings,

Lottie

[Guest guest]

Scientists, like bureaucrats, have a strong tendency, not to say obsession,

of trying to fit everything and everyone into tidy little boxes, labels,

forms. It goes in general with quite a bit of oversimplification and gross

averaging, that doesn't always stand to reality. We all are different, had

different experiences before getting cancer, live different lives, are older

or younger, etc. The way we react to the bad news is going to be hard to

dissect in a small number of stages, or some other form-like theory, no

matter how neat it may sound.

My first reaction was by far " how the ... I am going to tell that to my

mother and brother " ? I couldn't decide for a while if the best wasn't not

to tell them at all. My brother was just celebrating his wife getting

pregnant after several years of trying, bad timing. I actually told my boss

at the lab before telling it to my family. Fortunately I was between

girlfriends and at least hadn't to deal with that, a bad thing can sometime

turn into a blessing. I don't think I was ever angry about the cml. Sure I

was scared, and the loss of weight wasn't fun. But I had a couple of moments

a long time before cml when I was feeling more helpless and my very short

term survival was looking a lot worse. Also times more painful than what I

was feeling at dx. But I got very lucky and I am still here, with just a few

scratches and bumps, I guess I felt I ll pass once again between the rain

drops, call it denial if you want, but the facts were leaning that way with

gleevec. I did feel really lucky to get leukemia in 2005 and not 10 years

before. As Tracey mentioned once, a bit of anxiety comes back periodically

when I am waiting for pcr results and I wait to see if the other shoe drops,

but it isn't so bad.

Marcos.

On Wed, Mar 26, 2008 at 2:12 PM, Lottie Duthu <lotajam@...> wrote:

>

>

>

>

> Dear Tracey,

> I'm aware about the 5 stages that we are supposed to go through and it's

> strange, I skipped the first 3 and went right to the crying (depression)

and

> acceptance. I was never angry with God, because I don't believe in a

> punishing God, and I knew if I was in the wrong place at the wrong time, I

> could be " the one " and I never tried to bargain. I was just so overwhelmed

> with the depression I couldn't move past it for 3 weeks. I knew it was CML

> and nothing I could do but fight and there began my battle. I began to

fight

> back with letters and phone calls. It wasn't until I got on the internet

> that I really begin to find there was a small light at the end of the

> tunnel. That light is getting bigger and the tunnel is getting wider. As I

> learn more, so does my faith build me up. I had a lot to learn about

search

> engines and what information was good and where the best research centers

> were. It was some time before I joined the ACOR group, and it saddens me

> that very little is ever said or done there. After about 2 years, I

dropped

> out, I had learned about Gleevec being trialed and I set my sites on it,

> determined to be on that band wagon. I called Novartis and got myself

> enrolled before my doctor even knew about it. He soon learned I meant what

I

> said when I said I would sometimes get ahead of him. He saw me through 4

> years of Gleevec, starting out with 100 mg. and moving up to 600 mg. As

soon

> as he found an opening to get into the BMS trials, he called and said to

get

> myself up there ASAP. I had broken my foot, was in a cast and a wheel

chair.

> We took the back seat out of the van, threw our belongings in and left for

> Houston like the Beverly Hillbillies.

> There were ups and downs. I was in the trial, I was out of the trial and

the

> doctor said by some strange miracle, the last tests were the reverse of

the

> earlier tests and I had passed the heart tests. The third time was the

> charm.

> Jumping to another subject about chest pain, I thought about the time I

had

> pleurisy and I am posting a website here about pleurisy to see if you can

> find any similarities to the pain you are having, .

>

> http://www.healthsquare.com/ndfiles/nd0405.htm

>

> Blessings,

> Lottie

>

>