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 Post subject: Carol Burnett
PostPosted: Tue May 13, 2003 6:47 pm 
Does anyone know why te hell Carol Burnett does not advocate and rally for lung cancer? Her daughter died very quickly from it!


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 Post subject: Carol's choice
PostPosted: Tue May 13, 2003 7:10 pm 
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Location: Minnesota (grew up Massachusetts)
Carol Burnett has chosen to work with the American Lung Assoc. "Freedom from smoking" program. :|

_________________
NSCLC, 4 cm Pancoast tumor, diag. 12/3/97 Cisplatin and VP 16, Radiation, R upper lobectomy, more Cisplatin and VP 16. Celebrating 16 yrs of survival ! Click here and read MY STORY

http://lungevity.org/l_community/viewtopic.php?f47&t=9092


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 Post subject: Carol Burnett/Stigma
PostPosted: Fri May 16, 2003 8:18 am 
The really horrible thing is that she has a blame the victim mentality...she said her daughter asked her if she would "forgive her for smoking." AND SHE IS NOT THE ONLY CELEBRITY/FAMILY MEMBER AFFECTED BY THIS DISEASE WHO WON'T DO ANYTHING FOR IT:

- George Harrison's wife
- Donna Karan's husband died of it
- Joel Siegel was diagnosed with Stage I
- Ted Kennedy's daughter
- Jason Robards died of LC


...the list goes on and on. In fact, most people don't want to acknowledge their family member even had it because of the stigma. It is worse than AIDS.


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 Post subject:
PostPosted: Fri May 16, 2003 8:44 am 
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Can we start a letter writing campaign? maybe asking them too to check out our message baord to see all the amazing people and stories?

_________________
Dad: Stage IV NSCLC with Met to bones dx 1/06.


4/18/03 Liver Met. and Adrenal Gland BUT lung mass shrunk considerably.


5/17/03 Brain Met.

mouth/throat cancer survivor for over 10 years.
#1 Dad passed away 5/25/03 at 12:55 am

Picture of all, Me (green monster), my sister Kim on big wheels and Sandy and my dad on my bike in June 1981


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PostPosted: Sat May 17, 2003 1:22 pm 
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Location: Queens, NY
Reading about the lack of backing for lung cancer has me very upset. That people who had lost loved ones to this won't help is totally beyond me. I DO NOT UNDERSTAND IT AT ALL. on one site (i forget which one) there were celebrity spokespeople (Christie Turlington - father died of lc, S. Epatha Merkeson from Law and order, was another) but really very few and far between support us. I do remember the tv commercial that Yul Brenner made, pleading with people not to smoke, that he was dying from it - and he did! also i read on a web site an interview with a top cancer doctor and they asked him how many cigarettes do you have to smoke before you're at risk for lung cancer - the answer - ONE. Only ONE.well, over my short lifetime (turned 50 last sunday) i have smoked thousands and have dug my own grave. if the words of that dr. could be put on tv, and in every magazine that advertises cigarettes, and on every rock and roll CD produced, maybe another 15 year old wouldn't try a cigarette like i did. maybe if movie stars that boast about having rooms in their mansions redesigned to be humadors for their $200 cigars, then smoking wouldn't be glamorous (Mr. Schwarzenegger, Mr. Stalone, Mr. Willis, you listening?) Smoking one cigar is the equivalent of smoking 4 cigarettes. Mr. Perelman, did he even answer the letters sent to him? In an earlier posting, i gave my opinion about why tobacco products are still sold to the public. I still stand by that opinion; they deliberately hooked me. they doomed me right from the start. what is the purpose of stopping? someone tell me. i'm gonna die anyway :cry:

_________________
Joanie C SIX YEAR Survivor
[size=9]Diagnosed Limited SCLC, April 2002
Concurrent Radiation
(16 Doses twice daily)
And
4 Rounds Cisplatin/Etopside Chemo
All therapy completed June, 2002
Back to Work July, 2002
Diagnosed Hypothyroid, Nov. 2004
(due to radiation)
Evidence of healing on each CAT scan.
All scans Clear
Last Check Up Sep. 2005 - NED
Dec.12, 2005 Uncontrolled bleeding from tumor cavity. Emergency surgery performed which closed the hole permanently. Healing continues and I look forward to a bright future.
June, 2006 - NED on CAT SCAN. Scan shows IMPROVEMENT from December. Hurray! Experienced fevers through summer. Took antibiotics.
July, 2006 six month Oncologist visit. All is well! Go back in December. Hurray!
August 8,2006 Sudden,uncontrolled bleeding from surgery site. The tumor site was repatched with my own aumentim. All looks successful and I was released from the hospital after 33 long days.
Oct.19, 2006 bleeding returns.Tests reveal hospital-acquired germ has eaten away at tumor repair sight. Results in 2 more operarations and 13 days in hospital.
Recuperating at home. Daily nurse visits to change bandages on incision site.
March, 2007 - NED CAT Scan. Incision healing nicely.
April, 2007 - 5 year anniversary! Still bandaging the incision daily.
July CAT Scan - NED once again.
July 2007, operation to open surgical incision to promote healing. Still bandaging daily.
July, 2007 - was called a "walking miracle" by four doctors at the hospital. They were truly amazed to hear my story.
1/14/08: Lost my best pal, Dagwood, to old age at 14 years on . He helped me thru this struggle and I will miss him forever. I still consider myself to be "Daggiesmom."
Feb. 25, 2008: Finally had the repair surgery (9 hours and 7 days in the hospital) to close hole in my bronchus and to close surgical packing hole in back which has been open for 16 months. I expect to be healing for a few months.
January 2009 - I've healed nicely from the February operation and the CAT scan today showed NED once again!
March 11, 2009. Hemoptosys again and admitted to hospital. Due to bacterial infection. Bleeding stopped and I'm on antibiotics. Seems I am prone to these bleeds?


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 Post subject:
PostPosted: Sat May 17, 2003 1:44 pm 
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Joined: Tue Jan 07, 2003 5:32 pm
Posts: 1119
Location: Dallas, Texas
It is hard to understand the "You Asked for it" Attitude of the majority. I tell about my father-in-law and the 1st thing asked is "HOW LONG DID HE SMOKE"

We all know that a % of people with Lung Cancer did not smoke at all, however for the ones that did or do it is irritating.

Extreme sports atheletes
-that jump off mountains/cliffs
-race car drivers that crash into the wall and
-Sky Divers
-and so on

all were warned of the dangers of what they are doing and chose to do it
and the public mourns each of them when they pass away, but smoking, not in your life.

i just want to smack people when that question arises but hold back and give them the same lecture each time about stats etc.


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 Post subject:
PostPosted: Mon May 19, 2003 7:28 am 
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Joined: Wed Feb 12, 2003 10:08 am
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Location: MA
I am surprised a lot of people would not use their celebrity to advocate more!!! Hey when i am famous you bet your butt I will be the biggest advocate! :D

_________________
Dad: Stage IV NSCLC with Met to bones dx 1/06.


4/18/03 Liver Met. and Adrenal Gland BUT lung mass shrunk considerably.


5/17/03 Brain Met.

mouth/throat cancer survivor for over 10 years.
#1 Dad passed away 5/25/03 at 12:55 am

Picture of all, Me (green monster), my sister Kim on big wheels and Sandy and my dad on my bike in June 1981


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 Post subject: pity
PostPosted: Mon May 19, 2003 10:38 am 
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Joined: Thu Apr 10, 2003 7:06 pm
Posts: 2207
Location: Queens, NY
BUFU (Guest User),
I'd rather be in my shoes than yours anyday. it must be terrible to be you.
Joan

_________________
Joanie C SIX YEAR Survivor
[size=9]Diagnosed Limited SCLC, April 2002
Concurrent Radiation
(16 Doses twice daily)
And
4 Rounds Cisplatin/Etopside Chemo
All therapy completed June, 2002
Back to Work July, 2002
Diagnosed Hypothyroid, Nov. 2004
(due to radiation)
Evidence of healing on each CAT scan.
All scans Clear
Last Check Up Sep. 2005 - NED
Dec.12, 2005 Uncontrolled bleeding from tumor cavity. Emergency surgery performed which closed the hole permanently. Healing continues and I look forward to a bright future.
June, 2006 - NED on CAT SCAN. Scan shows IMPROVEMENT from December. Hurray! Experienced fevers through summer. Took antibiotics.
July, 2006 six month Oncologist visit. All is well! Go back in December. Hurray!
August 8,2006 Sudden,uncontrolled bleeding from surgery site. The tumor site was repatched with my own aumentim. All looks successful and I was released from the hospital after 33 long days.
Oct.19, 2006 bleeding returns.Tests reveal hospital-acquired germ has eaten away at tumor repair sight. Results in 2 more operarations and 13 days in hospital.
Recuperating at home. Daily nurse visits to change bandages on incision site.
March, 2007 - NED CAT Scan. Incision healing nicely.
April, 2007 - 5 year anniversary! Still bandaging the incision daily.
July CAT Scan - NED once again.
July 2007, operation to open surgical incision to promote healing. Still bandaging daily.
July, 2007 - was called a "walking miracle" by four doctors at the hospital. They were truly amazed to hear my story.
1/14/08: Lost my best pal, Dagwood, to old age at 14 years on . He helped me thru this struggle and I will miss him forever. I still consider myself to be "Daggiesmom."
Feb. 25, 2008: Finally had the repair surgery (9 hours and 7 days in the hospital) to close hole in my bronchus and to close surgical packing hole in back which has been open for 16 months. I expect to be healing for a few months.
January 2009 - I've healed nicely from the February operation and the CAT scan today showed NED once again!
March 11, 2009. Hemoptosys again and admitted to hospital. Due to bacterial infection. Bleeding stopped and I'm on antibiotics. Seems I am prone to these bleeds?


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 Post subject:
PostPosted: Mon May 19, 2003 11:08 am 
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is BUFU (Guest User) serious??? I hope not i am hoping it was a joke.. eh if so I am sure one day will maybe find out that it is NOT just a smokers disease...

but hey i mean it takes a real winner to log on to a board for lung cancer and try to harass people....hey buddy i think you should maybe look into the meaning of my name....cause it is a witch! :D

_________________
Dad: Stage IV NSCLC with Met to bones dx 1/06.


4/18/03 Liver Met. and Adrenal Gland BUT lung mass shrunk considerably.


5/17/03 Brain Met.

mouth/throat cancer survivor for over 10 years.
#1 Dad passed away 5/25/03 at 12:55 am

Picture of all, Me (green monster), my sister Kim on big wheels and Sandy and my dad on my bike in June 1981


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 Post subject:
PostPosted: Mon May 19, 2003 11:09 am 
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Joined: Wed Feb 12, 2003 10:08 am
Posts: 891
Location: MA
http://www.smokefreeair.org/fds.pdf

Meant to post this.

_________________
Dad: Stage IV NSCLC with Met to bones dx 1/06.


4/18/03 Liver Met. and Adrenal Gland BUT lung mass shrunk considerably.


5/17/03 Brain Met.

mouth/throat cancer survivor for over 10 years.
#1 Dad passed away 5/25/03 at 12:55 am

Picture of all, Me (green monster), my sister Kim on big wheels and Sandy and my dad on my bike in June 1981


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 Post subject: education
PostPosted: Mon May 19, 2003 11:17 am 
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Joined: Thu Jan 09, 2003 6:22 pm
Posts: 3603
Location: Minnesota (grew up Massachusetts)
I know our guest "BUFU (Guest User)" is ignorant. I hope he stays with us and gets educated. :roll: Here we are trying our hardest to survive, and people tell us we tried to kill ourselves. That does not make sense. Because it is well known that polutents particularly smoke causes lung cancer, he thinks we all smoked, not true. He thinks by his statement that smoking is the only polutent that causes lung cancer, not true. Many of us were led to believe that if we quit smoking, even years ago, that we were not at risk for lung cancer, not true. :roll: If we ever smoked, that is history. We are fighting for our lives and don't need to have to spend our energy defending ourselves from that type of attitude. If he stays , he'll find we are great people, neighbors, friends, relatives, teacher, nurses, priests, ministers, doctors, bankers, moms, dads, sisters, brothers, daughters,sons, good people.

_________________
NSCLC, 4 cm Pancoast tumor, diag. 12/3/97 Cisplatin and VP 16, Radiation, R upper lobectomy, more Cisplatin and VP 16. Celebrating 16 yrs of survival ! Click here and read MY STORY

http://lungevity.org/l_community/viewtopic.php?f47&t=9092


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 Post subject:
PostPosted: Mon May 19, 2003 11:23 am 
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OVER 1000 POSTS !

Joined: Wed May 07, 2003 12:50 pm
Posts: 1404
Location: Southern Carribean
MY MOMS CANCER WAS FROM ASBESTOS NOT SMOKING. geez I guess I should damn her to hell for going to work all those years in that building that was insulated with asbestos. DAMN her for trying to make a living and put food on out table and keep a roof over our heads. Yeah she did deserve lung cancer dufus, i mean BUFU (Guest User). Maybe I should just go home and shoot her huh.

_________________
Shelly

lost MOM to Lung Cancer 8/15/2003

Lost cousin Tom to Tounge Cancer 1/1/2004

lost DAD to Lung Cancer 6/8/2004

sister dx'd Breast Cancer 6/11/2004

Lost Father in Law to Lung Cancer 4/23/2005


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 Post subject:
PostPosted: Wed Jun 11, 2003 1:57 pm 
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Joined: Fri Feb 28, 2003 2:56 pm
Posts: 192
Location: Southaven, Ms.
Shelliemac you do have a way with words girl!! Bravo!!!
Believe me had I known 30yrs ago that at age 50 I would be here I would have changed my ways. Yes, I want to see my grandchildren grow up. Yes, I want to grow old with my husband. I want to retire and enjoy what I have worked for all these years. But back then the only warning was for pregnant women and then well like so many I just couldn't see the forest for the trees. I am not a bad person. I smoked. That is not the only bad choice I even made in life. So I will keep on keeping on and hope God is on my side and I have the grace to finish my life in style with his help.

_________________
Dx. 11/02 SCLC
6 rounds chemo: Carbo/VP 16
6 weeks radiation
2 weeks PCI
Clean scan 4/03-6/03/-9/03-12/03-3/04


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 Post subject:
PostPosted: Wed Jun 11, 2003 5:16 pm 
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Joined: Sun May 04, 2003 5:06 am
Posts: 3645
Location: Northern Santa Barbara County, California
Joanie,

The reason we should stop smoking is simple. We stand a better chance of long term survivorship if we stop. If we continue to smoke it impacts how we respond to treatment, and even determines what treatments will be made available to us. You don't deserve this... none of us do. Best Wishes, Fay A.

_________________
Fay A. age 44 at diagnosis
NSCLC Adeno W/ BAC Features
Rt. Lung Upper and lower lobe segmentectomies 6-99, 4-00
Rt anterior thoracoscopy 11-00
Iressa 5-02 to 1-03
Pneumonectomy Rt. Lung and all Nodes right side of chest 5-03
Carbo-Taxotere 9/03-12/03
Recurrent Disease on Rt. Bronchial Stump/Subcarinal Node (missed one!)paratrachea 1/04
33 Radiation Treatments/Daily Amifostine Injections 8/2004
Mets to Right Axilla 8/04
12-26-04 Tarceva
1-17-05 Scans show NERD!
4-05 Scans show NERD!
6-22-05 Clear Chest Xray
7-22-05 1.7cm Tumor Left Lung, possible 1.5cm to right shoulder.
7-27-05 3mm to 1mm CT shows 1.7 cm lesion confirmed. Bummer.
8-17-05 Botched FNAB with bleeding into both lobes of left lung and botched insertion of 1st chest tube requiring insertion of second chest tube, and pathology inconclusive as to malignant or not.
9-7-05 Left Lung Wedge Resection to remove tumor (cancerous after all and a different type of Adenocarcinoma than previous tumors in right lung. Surgeon used standard thoracotomy incision on left side. One broken rib (he says greenstick fracture). More pain with this surgery than any of the previous 3 big thoracotomies on the right side. Still in a significant amount of pain as of 9-27-05.
12-1-05 Coughing spell breaks left rib; 12-9-05 CT scan shows mass in left pleura; 1-3-06 FNAB of Pleural mass shows Malignant. Left side ribs continue to break. 1-6-06 start Gemzar alone. Add in Tarceva as soon as stomach can tolerate it.
-----------------------
Lost my Mother, My Maternal Aunt and Uncles, Maternal Great Aunts, numerous cousins to Adenocarcinoma with BAC or BAC only Lung Cancers. I am the third "...biopsy proven..." generation with Adeno with BAC. Not all family members afflicted with this disease were smokers or exposed to tobacco smoke. Paternal side of family remarkable for Pancreatic Cancer or Chronic and acute Pancreatitis as cause of death in everyone. BAC is also primary in the Pancreas, the only other organ besides Lung known to be a primary locus for Bronchioloalveolar Carcinoma (BAC).
Researchers are looking into BAC as a possible bone cancer! Exciting news as I have had removal of Giant Cell Bone Tumors off and on since I was a young child. We were always told that my bone tumors were considered 'benign' because they were a very slow growing tumor and could take 20 or more years before they spread to other areas. I am paying special attention to the work out of the University of Ohio in Cleveland and hope that my children will keep up with the work being done there when I am gone. Their lives may depend upon what those folks learn over the next few years. These are the same researchers who found the location of the defective genes involved in the development of Lung Cancer in Non Smokers which are also the same genes involved in the development of some forms of Polycystic Kidney Disease, which I also have.
------------------------
Some other health issues I face:
Polycystic Kidney Disease with Multiple Organ Involvement; Benign Meningioma, Benign Left Adrenal Tumor, Giant Cell Tumors of the tendons and bone, Bilateral Mastectomies for pre-malignant Breast Tumors, many other benign tumors and cysts in the skin, veins, muscles and other organs; Sjogren's Syndrome, Crohn's-IBD with Hiatal Hernia and GERD, Rheumatoid Arthritis,
Ehlers-Danlos type connective tissue disorder, Degenerative Disc Disease of Spine. Heart Murmur.
Praying for One Smart Cookie and an Armadillo!


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 Post subject:
PostPosted: Wed Jun 11, 2003 5:47 pm 
Folks:

I'm feeling great. I'm high right now, as I don't get my next chemo until Tuesday, June 17.

I have gone through and I have read all the comments, now it's my turn. I'll warn you, I'm pulling out all the stops, as this is one issue I am very, very sensitive about.

As most of you are aware, Estrea sent a mass email requesting help in getting local chapters of LCSC established throughout the US. I back Estrea 1000%, not 100%, 1000%. This is exactly how the Breast Cancer movement got started - small groups throughout the US, then combined into a national movement that has grown by 10,000's and is now the strongest cancer movement in the US. MY DREAM IS TO EXCEED THE NUMBER AFFILIATED WITH BREAST CANCER.

We CAN do this, as we have more people diagnosed each year with lung cancer than those with breast cancer. We are short on survivors, but I believe we can talk louder than they can. We have much more at stake. We are losing far too many, each year, to lung cancer, and this has to STOP :!: :!: :!: :!:

Today, was the meeting of the Lung Cancer Support Group, affiliated with the University of Wisconsin Comprehensive Cancer Center, where Dr. Schiller is located. I am going to quote Dr. Joan Schiller, in what she told me just two weeks ago:

"We have to get the word out about lung cancer. We have gone far too long and the death rate has to stop. We need groups, actively pursuing lung cancer awareness and research, throughout the entire country. We must take a stand and it must start NOW :!: :!: :!: "

Opportunity is knocking at our door. We cannot wait any longer. The time is now :!: :!: :!:


What does it take? Meet with the social workers at your local hospital, cancer center, or State University Medical Center. Tell them what you want to do - tell them, don't sugar coat it. Make it well known that the time is now. Talk to your local newspaper, get a public service announcement with a contact phone number, and that you are interested in forming a group for Lung Cancer.

As I look over the membership list, we now have represeantation from almost all of the Continental 48 States. Look over the membership list and send a private message, or email to others within your state, Don't be shy about this, because now is not the time to be shy. THIS CAN BE DONE

None of us deserved lung cancer. None of us deserved having a family member, or friend, with lung cancer. None of us deserved losing a family member, or friend, to lung cancer. It doesn't matter whether we smoked or didn't smoke - that is no longer the issue. The issue is: LUNG CANCER IS THE NUMBER ONE HEALTH ISSUE IN THE UNITED STATES TODAY AND THIS HAS TO STOP :!: :!: :!:

And it has to stop NOW :!: :!: Not tomorrow, not next week, not next month, not next year, but TODAY :!: :!: :!:

That's the end of where I stand on this issue. My stance will not change.


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 Post subject:
PostPosted: Sat Jun 14, 2003 3:19 am 
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Joined: Wed Jan 29, 2003 4:13 am
Posts: 2255
Location: mi
I have no idea why Dave, but your post made me cry..I keep thinking about doing something..I am not very aggressive and just dont know where or how to start..I get overwhelmed with this whole thing, but I really do want to help I think I just need a shove...

_________________
Wonderful Dad has NSCLC 3AB dx 10-02
Lower Lobectomy 11-02
4 1/2 wks radiation 1-03
Developed Radiation Pneumonitis 2-03
Developed pulmonary fibrosis. 4-03
oxygen 24/7, prednizone
Prayers neeed!
My precious Dad lost his battle 8-19-03
Heaven received a very Special Man
We miss You Dad


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 Post subject:
PostPosted: Sat Jun 14, 2003 8:56 am 
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Joined: Sat Jan 11, 2003 12:14 pm
Posts: 83
Location: greenup KY
I feel the same way that kathy does. I want to do something, I hate this damned disease. I want to stop it... I want the funds and the RESPECT that breast cancer survivors get......

Shove me too....

Renee


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 Post subject: Stigma
PostPosted: Wed Jun 18, 2003 6:29 pm 
When my mom was dx'ed in '97, all they kept harping on was DID she smoke, DID she come in contact with second hand smoke? She quit smoking about 15 years earlier at that point and had minimal contact with second-hand smoke. The attitude was- you asked for it. That sucks. Rickey said it so well- others who do more dangerous things are mourned when something happens to them, but smokers, well, forget it. I have always disliked doctors with their holier-than-thou attitude, now I hate them.

And yes, I smoke, about 2 packs a WEEK max and I don't intend to stop.


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