we need to help Bean Si.

[shelliemacs]

tell me if this is do-able.

Bean is going through hell right now. I dont' know her name or where she lives but I feel compelled to help her somehow.

If someone knows her please see if she will allow this information to be revealed.

If we all make calls to Alcase or A.C.S or start a letter writing campaign on her behalf to try to find her another oncologist who may help her and donate the drugs she needs pro-bono, maybe an oncologist is willing to get name recogonition instead of money in this case.

is any of this do-able let me know. maybe we can start some sort of grass roots movement to help her. ok so maybe she may not ultimately win this battle 15 years from now, but thats 15 years we could give her if we all put our pens and telephones where are hearts are and DO SOMETHING for a fellow cancer survivor.

maybe we could start some sort of fund raising for any person on here who needs something like a months bills paid for them, or rent, or gift certificates for groceries or a months supply of pain meds or iressa or something to that effect.

cat is sinking right now and I can't do this alone but I want to do something. so if anyone knows her please contact her and ask if she would mind if we all do something on her behalf,

like i said even if we can send her some money to pay a months worth of bills...

give me feedback if I have crossed a line here.

[Guest pproctor]

Shelly,

I would be willing to donate financially or writing a letter if you need it. I do not have the time to organize anything but can help out with a donation or with a letter or both. Nice of you to reach out for someone! I've read her posts and it seems there is a lot on her plate beyond cancer!

My email is pproctor@zoll.com. Let me know what I can do

Patti

[Fall54]

Shelly Oh Shelly,

Yes, Yes and Yes again!!! I do have her phone # but have not called. She lives in Florida and is going through so much #$%^& right now it just tears me apart. I for one am willing to do what ever is needed. I love Cat!!! Let's get together and do what ever it takes. She lives alone and I so much want her to come live here in New Hampshire but I do understand her reasons why she cant. I have a wonderful large guest room that can be her's if she wants it. She will need to pay NOTHING!! If it's money she needs I am there for that. Cat in my opinion should not be living alone. This disease is bad enough never mind facing it alone!!! Keep in touch with me and we will find out what we can do for her. Thanks so much for this post!!!

God Bless You Shelly and Sis too!!

Jane

[Amy P]

Shelley -

I will do what I can - writing letters, $$ whatever. What a kind person you are to do this. Please let me know what you need me to do!

Much Love,

Amy

[renee_ky]

Count me in, whatever I can do, I will. Anything!!

Renee

[NellW]

Me too, I would love to help with letters or $ or whatever is needed.

[Fall54]

What a wonderful group of people. I feel very privledged to know. Thank You all for responding to Shelly's post. Anyone else want to help???

God bless you and keep you all,

Jane

[karenl]

Of course!! Count me in too.

Karen

[JoniRobertWilson]

I will PM you with my number. What does she need?

[lilyjohn]

I can write letters after work. I wish I could help her finacially but I just can't. Still I want to help in any way that I can. Just let me know. My heart breaks for her. She has enough going on with her health she shouldn't have to deal with an *ss like that. Lillian

[Guest bean_si (Not Active)]

I'm so overwhelmed by what you (and others) are trying to do for me I don't know what to say. I am speechless. I just can't believe it.

Shelly, if we could get people active - get them to write their representatives, we can make a difference, not just for us, but future generations. Think about it. Lung cancer stats are abysmal. So is the research. Gee, I wonder if there's a tie in? (Rhetorical question - of course there's a relation there). It's also horrendous the way some medical personnel treat lung cancer patients. We have to stop it.

As Fay has said, we need to get mobilized like AID's survivors. They didn't get the research they needed until they stood in front of the representatives and said, "Stop. Now. Look at me. I'm human. Don't act as though I'm not worthwhile because you think I caused my disease. I'm just like you and I want the chance to live."

We have to do it. Or our kids and grandkids will suffer. We will suffer. We can make changes to prolong our lives.

For the love of all that's holy, let's do it.

Somehow I'm going to convince Senator Graham and Congressman Wexler to come on board, maybe for a chat night. If not them - one of their people. If they come, more will follow. You guys, please take a few minutes to write a small paragraph to your reps. Invite them for a chat. Ask them to help all the people in their state from dying of lung cancer. Ask them to help improve research for lung cancer so their kids and your kids have a better chance at a longer life. Ask them to support present legislation for cancer victims. Suggest they help with new legislation insuring sufficient research on lung cancer.

Understand people - we can be the ones who make a difference. We can save ourselves. We can save our kids. Please.

Jane, thank you, I will call you this week. At the moment, I'm so overwhelmed I'm having trouble thinking straight. I'm almost in shock. And I will be going to bed soon.

I can't believe the kindness of people I don't even know. I just can't.

Cat

[-Cheryl-]

I have said it before and I will say i again.... We need a forum for all of the survivors to complain about bogus Doctors. Put it out there in front of everyone to see. If people knew who and what there names were, maybe we could call him or her and give our opinions. I guarantee you this, if Cats Onc told my wife what he told her (she could be a clerical worker and was not eligible for Dis), his *ss would be mine. I would like to see if he would do the same if he was diagnosed with LC. Please don't give me his name and phone number. I would certainly ruin his day.

-Jack-

[ginnyde]

Thank you Shelly, not just for Cat, but for all the members heres.

I love this site and I appreciate everything that Katie and Rick have done, especially considering that they both work full time and have small children.

But, I have been trying to figure out for a long time where this site should be going. The message board with it caring, support and knowledge is amazing, but I think there is much more that can be done. We have over 1300 registered members, but there are really only a small percent that are actively involved.

Here's my point, (I know finally). There are now donations coming into this site, I hope. Can't this money be used to help our members. Too simple I know. We need to make sure that their need is legitimate and not some scam. I try to donate in memory of someone who has passed if I have felt a connection to them. Right now I am not doing that because I don't think the family knows that is happening and I am not sure what is happening to my $$$.

This is an important issue that the board needs to address. I have believed since the beginning that we have the makings of being a force in lung cancer in many different ways.

Would love to hear others opinions.

Thanks for listening.

[Guest bean_si (Not Active)]

Yes, without KatieB and Rick we'd be nowhere. Now is the time to use this marvelous board as a springboard!

Invite our reps in. How about for a chat night?

As Jack suggested, how about a forum where problems with medical person, testing, hospitals and insurance companies can be posted. That way they won't have to search. We want to make it easy for them.

Writing your reps isn't hard. Just go to http://capwiz.com/laf/home/ for info on your rep. All you have to do is insert your zip code. Then write a short note, just ask them to come by.

If you're short on time, copy and paste this, print it and send it off. It will only take a minute. I do suggest you improve the wording.

The Honorable

Dear Senator,

Lung cancer is the leading cancer killer in both men and women in the United States. I am inviting you to visit our lung cancer support group. http://www.lchelp.com. Please come & see the pain these people are undergoing because lung cancer research is so underfunded and because of negative remarks and actions from others, including doctors, who appear to believe they caused their own cancer.

We need your help, all 1400 of us.

We would love to have you drop by. Please check the schedule of our chat nights on the main page. These are interactive chats and your participation would be so welcome. Thank you."

Copy and paste. Please. Thanks to everyone here. We are going to do it! We are going to make a difference!

Cat

[tnmynatt]

I'm late. Haven't had a lot of time lately to come to the board. Count me in! Let me know what I can do to help in addition to writing letters.

Cat we love you!!!! Hang in there.

[Connie B]

Hi All,

I think it's great what you all wish to do here. I just want to remind all of you that we did and HAVE tired repeatedly to do just what your talking about here. If you go back and look up the Activism/LC Issues, you might even find letters that we used a year or so ago to bring attention to Lung Cancer and the issues. I know that Dave G, tired, Katie and Rick tried, Estrea tired, I tried, and many others. So, you have your work cut out for you, and I HONESTLY hope this time it WORKS!!! We never say NEVER!!

I would LOVE to see everyone get involved.

God Bless and Good Luck! And by all means check out the Activism/LC Issues Forum. You'll find lots of good idea's and help. Also, go read our MISSION statements at the top of the Board here. We have LOTS of good information posted on the top of this Board.

[Guest bean_si (Not Active)]

Giving Up Too Soon

A man meets a guru in the road. The man asks the guru, "which way is success?"

The berobed, bearded sage speaks not but points to a place off in the distance.

The man, thrilled by the prospect of quick and easy success, rushes off in the appropriate direction. Suddenly, there comes a loud "SPLAT." Eventually, the man limps back, tattered and stunned, assuming he must have misinterpreted the message. He repeats his question to the guru, who again points silently in the same direction.

The man obediently walks off once more. This time the splat is deafening, and when the man crawls back, he is bloody, broken, tattered, and irate. "I asked you which way is success," he screams at the guru. "I followed the direction you indicated. And all I got was splatted! No more of this pointing! Talk!"

Only then does the guru speak, and what he says is this: "Success IS that way. Just a little PAST splat."

[Haylee_38]

Count me in for anything thats needed. Haylee

[teresag]

Here's my letter to my Senator (one of them) - using bean si's text liberally and expanding upon it.

Dear Senator Smith,

I am writing to gain your support for the estimated 170,00 people who will be diagnosed with lung cancer this year. Lung cancer is the leading cancer killer in both men and women in the United States and the world, yet garners fewer NIH dollars than breast or prostate cancer. Lung cancer is the 2nd most common cancer, after female breast and male prostate cancer, yet lung cancer survivors comprise only 4% of living cancer survivors, fewer than seven other major cancers (http://www.cdc.gov/mmwr/preview/mmwrhtm ... 3.htm#fig2).

I do not have lung cancer. My father, Cdr. Zemo C. Tarnowski, USN, camp commander at the Japanese prison camp where he suffered for 3 1/2 years, died of it. He was addicted to nicotine for over 50 years before his health forced him to quit smoking.

As a health care provider, I too often see people whose physicians have offered them little or no treatment. Mr. S., a veteran, was given a prescription for an expensive last-resort medication and essentially told to go home and die. He could not afford the medication, so he sought a second opinion, and was offered surgery and chemotherapy. His lung cancer was treatable.

I am asking two things of you. First, make lung cancer your issue. Champion increased research funding and health care provider awareness to decrease the toll of lung cancer on our society. As a government leader, you can improve NIH funding and help raise the consciousness of the uninformed.

Second, I am inviting you to visit the online lung cancer support group found at http://www.lchelp.com. Only a few minutes of your time will illustrate the human side of a disease plagued by dismal treatment and underfunded research. Please come and see the pain these people are enduring because of the state of lung cancer research and because of negative remarks and inappropriate actions from health care providers and laypeople who think these people caused their own cancer.

No one deserves lung cancer. Please help.

Respectfully, Teresa Goodell, PhD,RN,CNS,CCRN,CS

[Guest bean_si (Not Active)]

Yes! Fantastic!!!!

I meant to post this earlier but got so sidetracked as most have noticed. Dear, dear people - I love the fact that you're offering to give or raise money for me. But I won't accept it because you need it to wage your war on cancer.

I would appreciate letters to Senator Graham just saying you heard about my case and feel it should be thoroughly investigated. If anyone pms or emails me I'll give you my real name (and then you'll know why I don't use it!)

What I want - what we all need is to get our Senators and Congressman to notice the problem. That's what most excites me about the responses - that people are willing to take action instead of passively accepting the so-called inevitable. Let's do something so lung cancer is NO LONGER a death sentence.

You all know what a difference a single person or two can make. Look what Rick and KatieB did. What a tremendous difference.

Now it's our turn.

Cat

[dadstimeon]

Hi Katie,

Whatever you do with my donation(s) is fine with me. I do not need any spreadsheet nor do I have any doubts what so ever you are using it for what it was intended for which is to maintain this site. It is very expensive and very time consuming to run this message board. I trust, respect and appreciate you (and all the board members) for your hard work, dedication, loyalty and tireless effort in keeping this message board up and running. Peace, take care and God Bless.

Rich

[Guest bean_si (Not Active)]

I agree with dadstimeon. I don't think most people have any conception of the time and money it takes to run a large website. At one point my magazine was monthly. I had no free time. None. All my time was devoted to the site. And I was running it at a loss. I loved doing it so it was okay but at times it was frustrating that the artists and writers had no idea how much time I put in to showcasing their work.

Cat

[glo]

Add me to the list of those who have no qualms about where my donations go. Don't need a spreadsheet -- don't need a receipt. In the past I've donated and said use it for whatever LCSC needs -- was surprised to receive back one of Katie's neat tote bags with a receipt! I can't even begin to imagine how much of the Brown family income has gone into this site, let alone how much time!

Please keep on keeping on, Katie.

[Melinda]

Katie,

I think you know that Geoff and I have complete faith in what you and Rick are doing with any and all donations--and I am sure we are far from being alone.

Please keep in mind that the qoute you responded to was posted by a thoughtful and caring member of the board who is going through H%$L, herself, right now.

Just as I have no doubt that you and Rick are putting our pidly donations (we wish they could be more!) to very good use re: the upkeep of the site (and we know full well that they make nary a dent in the cost--both human and monetary--of running it)--I have no doubt that the member whose comment you were insulted by did not mean to imply what you inferred. She simply did not express herself in her normally clear manner (a fact that, I think, can be easily excused given what she is going through right now--her posts indicate both the physical and emotional strain on her right now, although she certainly deals with it all with more grace and humor than I would be capable of!).

After going back and looking at her post again, I think she was posing a larger question to the 1300 + membership about in what other way we can make a difference (how best to utilize our collective resources--monetary and otherwise). It is a natural question to pose when we are all so tired, frustrated, and feeling more helpless than we like as a result of this disease.

Please don't be insulted. We've all typed things less clearly than we'd have liked (especially during times of great duress).

As for Cat, we, too, would be more than happy to do whatever we can to help. Simply PM us.

To quote "TBone"--Praying for us all.

Melinda

[Elaine]

Katie

I dont think anyone implied that you or Rick were not using the money for the upkeep of the site. Everyone knows that. And no one thinks the two of you should have to do EVERYTHING. Maybe there is a n accountant on the board who could do this for you. I have said it before: there are many of us with many skills, so let us help. Some of us don't have a lot of money but we can still DO things. I can write grants. I can and do write letters. I have worked in advocacy and can help guide people in that regard. I did work many years ago as a accounts reveivable manager, but I no longer have the skills or the patience for that kind of work, but I bet there is someone who here who does--Curtis??? among others.

Katie maybe someday a ton of money will fall on us--so then we need to have a plan....

love and pls don't jump on me ANYONE because I feel like crap and I wrote this with all the love in my heart....

elaine