Lora's plight...now acceptance

[Guest guest]

Lottie,

I appreciate all that you have to say!! no charity hospitals....there is

one that has to take you about 90 minutes away. Something about a Burton

Hill (??) bill that congress passed that certain hospitals throughout the US

have to take you. However, because of the cancer, you can't just walk in &

say

I need this week's treatment. More of an ER only situation. Plus, you

lose another day's work, and that is if you get seen. There was & may still

be a small community clinic in a nearby town that has fees you pay are based

on income, however, they wouldn't see my husband because of the cancer. The

liability to treat a cold when they are not specialists while he was taking

Gleevec or now Dasatinib was not a position they were willing to be put in.

So, once again rejected. However, I certainly appreciate their concern & in

this day of crazy liability lawsuits.....can see them wanting to protect what

little funding they can obtain to try to help patients who are not as ill as

hubby.

We have obtained some of hubby's drugs from various sources, and we have

gone from him taking something like 20 drugs to just 3 on a daily basis....so

that is a miracle too. Every so often we have to add a few other things from

Feurosmide to an antibiotic. Just not near the mountain that it was

previously.

Credit counseling...well we had to file bankruptcy due to the medical bills.

So, that left us debt free.....until the medical bills started mounting

once again. We already lived simply, had our cars paid off, etc. You have

to look at the humor, as you begin the process. The lawyers say do not incur

more debt.....yet, hubby was going to a doc or getting a lab every few days.

I couldn't stop that, and of course, hubby was doing very poorly healthwise

at that point, so when we went before the judge, well, it was easy to see he

was truly ill. Our lawyer was surprised it went so smoothly, but when you

would meet hubby for the first time it was obvious during that time period

that he was ill. very pale, hard for him to walk, etc

One of the unique things about CML is that if you become stable...on the

surface, you look " fine " . Most patients don't become emaciated and lose all

their hair, etc as with many cancers. In fact, my hubby has gained quite a bit

of weight, mostly water bloat. So, it gives many folks & some docs the

thought that hubby is just lazy & eats all the time, etc. The given is hubby

puts his day in at work & then comes home eats dinner & then sleeps. With

spring arriving, I am hoping that I can " push " just enough for us to go for a

brisk walk in the afternoon to try to get him more exercise, which will also

help with his weight. His sleeping all the time is bothersome...but he is a

cancer patient after all.

as an aside...many of the longtime list members know.....my hubby was

rejected as a patient by MDACC. Since, we had limited finances, they would not

take him as a patient....yet there was some doctor there....Gomez, maybe?? that

was a CML specialist in Houston. Plus there were 2 Gleevec trials, etc.

We were even prepared to move, get new jobs, etc to be able to obtain

treatment. To say that I was heartbroken was an understatement. They had the

tools

& the skills to help my husband & once again, money stood in the way. So,

I have NO kind feelings regarding MD , though I know many on this

list speak so highly of them.

I also gag when the Cancer Treatment Centers of America commercials come on

TV. They wouldn't even send us literature through the mail since hubby

didn't have insurance.

So, through it all, we pick up the pieces, look for alternatives & move on.

I am a bit upset right now, because an internet friend's hubby died

yesterday less than 6 months after being diagnosed with I think was CLL. He

was

going to MDACC......and apparently wasn't doing well with the chemo. She

wrote

about 2 weeks ago & said he had given up & was not fighting any more. His

passing was peaceful & apparently had returned home at some point, so he died

in his sleep.

I can only be thankful on Valentine's Day that my hubby was willing to fight

through the hurdles & is with me.

Lora

**************The year's hottest artists on the red carpet at the Grammy

Awards. Go to AOL Music.

(http://music.aol.com/grammys?NCID=aolcmp00300000002565)

[Guest guest]

I too have all your sentiments towards MDACC, I was rejected because of

financial status. Besides wouldn't take me they sort of assisted in the death of

my mother almost 3 years ago. Her stay there was a horror story ( and she had

the ins, and money's so maybe I am the fortunate one.

Anita

[ ] Lora's plight...now acceptance

Lottie,

I appreciate all that you have to say!! no charity hospitals... .there is

one that has to take you about 90 minutes away. Something about a Burton

Hill (??) bill that congress passed that certain hospitals throughout the US

have to take you. However, because of the cancer, you can't just walk in & say

I need this week's treatment. More of an ER only situation. Plus, you

lose another day's work, and that is if you get seen. There was & may still

be a small community clinic in a nearby town that has fees you pay are based

on income, however, they wouldn't see my husband because of the cancer. The

liability to treat a cold when they are not specialists while he was taking

Gleevec or now Dasatinib was not a position they were willing to be put in.

So, once again rejected. However, I certainly appreciate their concern & in

this day of crazy liability lawsuits.... .can see them wanting to protect what

little funding they can obtain to try to help patients who are not as ill as

hubby.

We have obtained some of hubby's drugs from various sources, and we have

gone from him taking something like 20 drugs to just 3 on a daily basis....so

that is a miracle too. Every so often we have to add a few other things from

Feurosmide to an antibiotic. Just not near the mountain that it was

previously.

Credit counseling.. .well we had to file bankruptcy due to the medical bills.

So, that left us debt free.....until the medical bills started mounting

once again. We already lived simply, had our cars paid off, etc. You have

to look at the humor, as you begin the process. The lawyers say do not incur

more debt.....yet, hubby was going to a doc or getting a lab every few days.

I couldn't stop that, and of course, hubby was doing very poorly healthwise

at that point, so when we went before the judge, well, it was easy to see he

was truly ill. Our lawyer was surprised it went so smoothly, but when you

would meet hubby for the first time it was obvious during that time period

that he was ill. very pale, hard for him to walk, etc

One of the unique things about CML is that if you become stable...on the

surface, you look " fine " . Most patients don't become emaciated and lose all

their hair, etc as with many cancers. In fact, my hubby has gained quite a bit

of weight, mostly water bloat. So, it gives many folks & some docs the

thought that hubby is just lazy & eats all the time, etc. The given is hubby

puts his day in at work & then comes home eats dinner & then sleeps. With

spring arriving, I am hoping that I can " push " just enough for us to go for a

brisk walk in the afternoon to try to get him more exercise, which will also

help with his weight. His sleeping all the time is bothersome.. .but he is a

cancer patient after all.

as an aside...many of the longtime list members know.....my hubby was

rejected as a patient by MDACC. Since, we had limited finances, they would not

take him as a patient....yet there was some doctor there....Gomez, maybe?? that

was a CML specialist in Houston. Plus there were 2 Gleevec trials, etc.

We were even prepared to move, get new jobs, etc to be able to obtain

treatment. To say that I was heartbroken was an understatement. They had the

tools

& the skills to help my husband & once again, money stood in the way. So,

I have NO kind feelings regarding MD , though I know many on this

list speak so highly of them.

I also gag when the Cancer Treatment Centers of America commercials come on

TV. They wouldn't even send us literature through the mail since hubby

didn't have insurance.

So, through it all, we pick up the pieces, look for alternatives & move on.

I am a bit upset right now, because an internet friend's hubby died

yesterday less than 6 months after being diagnosed with I think was CLL. He was

going to MDACC......and apparently wasn't doing well with the chemo. She wrote

about 2 weeks ago & said he had given up & was not fighting any more. His

passing was peaceful & apparently had returned home at some point, so he died

in his sleep.

I can only be thankful on Valentine's Day that my hubby was willing to fight

through the hurdles & is with me.

Lora

************ **The year's hottest artists on the red carpet at the Grammy

Awards. Go to AOL Music.

(http://music. aol.com/grammys? NCID=aolcmp00300 000002565)

[Guest guest]

hi Lottie, can you contact me true my email, im sure i can help you its

jeanny-f@...

@...: awristen1@...: Thu, 14 Feb 2008 08:54:40

-0800Subject: Re: [ ] Lora's plight...now acceptance

I too have all your sentiments towards MDACC, I was rejected because of

financial status. Besides wouldn't take me they sort of assisted in the death of

my mother almost 3 years ago. Her stay there was a horror story ( and she had

the ins, and money's so maybe I am the fortunate one.Anita [ ] Lora's plight...now

acceptanceLottie,I appreciate all that you have to say!! no charity hospitals...

..there is one that has to take you about 90 minutes away. Something about a

Burton Hill (??) bill that congress passed that certain hospitals throughout the

US have to take you. However, because of the cancer, you can't just walk in &

say I need this week's treatment. More of an ER only situation. Plus, you lose

another day's work, and that is if you get seen. There was & may still be a

small community clinic in a nearby town that has fees you pay are based on

income, however, they wouldn't see my husband because of the cancer. The

liability to treat a cold when they are not specialists while he was taking

Gleevec or now Dasatinib was not a position they were willing to be put in. So,

once again rejected. However, I certainly appreciate their concern & in this day

of crazy liability lawsuits.... .can see them wanting to protect what little

funding they can obtain to try to help patients who are not as ill as hubby.We

have obtained some of hubby's drugs from various sources, and we have gone from

him taking something like 20 drugs to just 3 on a daily basis....so that is a

miracle too. Every so often we have to add a few other things from Feurosmide to

an antibiotic. Just not near the mountain that it was previously.Credit

counseling.. .well we had to file bankruptcy due to the medical bills. So, that

left us debt free.....until the medical bills started mounting once again. We

already lived simply, had our cars paid off, etc. You have to look at the humor,

as you begin the process. The lawyers say do not incur more debt.....yet, hubby

was going to a doc or getting a lab every few days. I couldn't stop that, and of

course, hubby was doing very poorly healthwise at that point, so when we went

before the judge, well, it was easy to see he was truly ill. Our lawyer was

surprised it went so smoothly, but when you would meet hubby for the first time

it was obvious during that time period that he was ill. very pale, hard for him

to walk, etcOne of the unique things about CML is that if you become stable...on

the surface, you look " fine " . Most patients don't become emaciated and lose all

their hair, etc as with many cancers. In fact, my hubby has gained quite a bit

of weight, mostly water bloat. So, it gives many folks & some docs the thought

that hubby is just lazy & eats all the time, etc. The given is hubby puts his

day in at work & then comes home eats dinner & then sleeps. With spring

arriving, I am hoping that I can " push " just enough for us to go for a brisk

walk in the afternoon to try to get him more exercise, which will also help with

his weight. His sleeping all the time is bothersome.. .but he is a cancer

patient after all.as an aside...many of the longtime list members know.....my

hubby was rejected as a patient by MDACC. Since, we had limited finances, they

would not take him as a patient....yet there was some doctor there....Gomez,

maybe?? that was a CML specialist in Houston. Plus there were 2 Gleevec trials,

etc. We were even prepared to move, get new jobs, etc to be able to obtain

treatment. To say that I was heartbroken was an understatement. They had the

tools & the skills to help my husband & once again, money stood in the way. So,

I have NO kind feelings regarding MD , though I know many on this list

speak so highly of them.I also gag when the Cancer Treatment Centers of America

commercials come on TV. They wouldn't even send us literature through the mail

since hubby didn't have insurance.So, through it all, we pick up the pieces,

look for alternatives & move on. I am a bit upset right now, because an internet

friend's hubby died yesterday less than 6 months after being diagnosed with I

think was CLL. He was going to MDACC......and apparently wasn't doing well with

the chemo. She wrote about 2 weeks ago & said he had given up & was not fighting

any more. His passing was peaceful & apparently had returned home at some point,

so he died in his sleep. I can only be thankful on Valentine's Day that my hubby

was willing to fight through the hurdles & is with me.Lora************ **The

year's hottest artists on the red carpet at the Grammy Awards. Go to AOL Music.

(http://music. aol.com/grammys? NCID=aolcmp00300 000002565)[Non-text portions of

this message have been

removed]__________________________________________________________Never miss a

thing. Make your home page. http://www./r/hs[Non-text portions of

this message have been removed]

_________________________________________________________________

[Guest guest]

Hi Jeanny,

So sorry to hear about your frustrations and harrowing road. I don't know your

age or that of your husband but you may well qualify for medicare and/or

SSDI--disability from social security. If you haven't checked, you should do

so.

Best,

L.

[ ] Lora's plight...now

acceptanceLottie,I appreciate all that you have to say!! no charity hospitals...

..there is one that has to take you about 90 minutes away. Something about a

Burton Hill (??) bill that congress passed that certain hospitals throughout the

US have to take you. However, because of the cancer, you can't just walk in &

say I need this week's treatment. More of an ER only situation. Plus, you lose

another day's work, and that is if you get seen. There was & may still be a

small community clinic in a nearby town that has fees you pay are based on

income, however, they wouldn't see my husband because of the cancer. The

liability to treat a cold when they are not specialists while he was taking

Gleevec or now Dasatinib was not a position they were willing to be put in. So,

once again rejected. However, I certainly appreciate their concern & in this day

of crazy liability lawsuits.... .can see them wanting to protect what little

funding they can obtain to try to help patients who are not as ill as hubby.We

have obtained some of hubby's drugs from various sources, and we have gone from

him taking something like 20 drugs to just 3 on a daily basis....so that is a

miracle too. Every so often we have to add a few other things from Feurosmide to

an antibiotic. Just not near the mountain that it was previously.Credit

counseling.. .well we had to file bankruptcy due to the medical bills. So, that

left us debt free.....until the medical bills started mounting once again. We

already lived simply, had our cars paid off, etc. You have to look at the humor,

as you begin the process. The lawyers say do not incur more debt.....yet, hubby

was going to a doc or getting a lab every few days. I couldn't stop that, and of

course, hubby was doing very poorly healthwise at that point, so when we went

before the judge, well, it was easy to see he was truly ill. Our lawyer was

surprised it went so smoothly, but when you would meet hubby for the first time

it was obvious during that time period that he was ill. very pale, hard for him

to walk, etcOne of the unique things about CML is that if you become stable...on

the surface, you look " fine " . Most patients don't become emaciated and lose all

their hair, etc as with many cancers. In fact, my hubby has gained quite a bit

of weight, mostly water bloat. So, it gives many folks & some docs the thought

that hubby is just lazy & eats all the time, etc. The given is hubby puts his

day in at work & then comes home eats dinner & then sleeps. With spring

arriving, I am hoping that I can " push " just enough for us to go for a brisk

walk in the afternoon to try to get him more exercise, which will also help with

his weight. His sleeping all the time is bothersome.. .but he is a cancer

patient after all.as an aside...many of the longtime list members know.....my

hubby was rejected as a patient by MDACC. Since, we had limited finances, they

would not take him as a patient....yet there was some doctor there....Gomez,

maybe?? that was a CML specialist in Houston. Plus there were 2 Gleevec trials,

etc. We were even prepared to move, get new jobs, etc to be able to obtain

treatment. To say that I was heartbroken was an understatement. They had the

tools & the skills to help my husband & once again, money stood in the way. So,

I have NO kind feelings regarding MD , though I know many on this list

speak so highly of them.I also gag when the Cancer Treatment Centers of America

commercials come on TV. They wouldn't even send us literature through the mail

since hubby didn't have insurance.So, through it all, we pick up the pieces,

look for alternatives & move on. I am a bit upset right now, because an internet

friend's hubby died yesterday less than 6 months after being diagnosed with I

think was CLL. He was going to MDACC......and apparently wasn't doing well with

the chemo. She wrote about 2 weeks ago & said he had given up & was not fighting

any more. His passing was peaceful & apparently had returned home at some point,

so he died in his sleep. I can only be thankful on Valentine's Day that my hubby

was willing to fight through the hurdles & is with me.Lora************ **The

year's hottest artists on the red carpet at the Grammy Awards. Go to AOL Music.

(http://music. aol.com/grammys? NCID=aolcmp00300 000002565)[Non-text portions of

this message have been

removed]__________________________________________________________Never miss a

thing. Make your home page. http://www./r/hs[Non-text portions of

this message have been removed]

__________________________________________________________