A Message to Stage I & II, & Family Members

[Guest DaveG]

I was diagnosed with Lung Cancer on 9-11-01, that's right, the same day the terrorists attacked the World Trade Center and the Pentagon. I had my first surgery on October 8, 2001 and was staged at Stage I. I was also told I was cancer free. Then in August 2002, a CT Scan again showed evidence of another tumor close to the same location as the first. I had my second surgery on September 10, 2002 and the tumor turned out to be benign. I was, again, declared cancer free.

During that year I started to become active on the internet, at other lung cancer website. I received an email from a lung cancer survivor I had come know over the internet. This survivor was Stage IV NSCLC. She was active in advocacy and activism, but do to going through treatment after treatment, her advocacy and activism work was being curtailed. She told that if lung cancer is going to gain the recognition, it so desparately deserves, it would be up to the Stage I's, family members, and caregivers. The reason: the survival rate of a Stage IV is very limited in comparison to a Stage I. Also, too often, family members and caregivers drop out of the picture, once the lung cancer patient passes on. So, the burden of the Lung Cancer Movement, falls on the shoulders of the expected long term survivors, those at Stage I or Stage II.

As many of the "oldtimers" on this site know, that when I was a Stage I, I was very active and very vocal. Now that I am a Stage IV, and presently having to do battle with liver mets, my efforts with lung cancer have had to turn inward and I have had to concentrate on my own well being. Believe me, however, I would rather be a Stage I and concentrating my efforts on gaining attention for lung cancer. As we all know liver mets is not the most favoritable mets for lung cancer.

The Lung Cancer Support and Advocacy Group of the University of Wisconsin Comprehensive Cancer Center had a successful two days with a lung cancer information table this past Tuesday and Wednesday. We are looking forward, with anticipation to next November and broadening our scope. The problem, 2-3 of us, who were instrumental in puling this off, this year, may not be here next year.

Advocacy and activism falls on the shoulders of those who can carry the torch for years to come. Therefore, this burden falls upon those with the best survival picture, those who are Stage I or II, family members, and the ones who care for us with lung cancer.

This past January, thanks to my firend Estrea, I was brought into this group as Co-Director. It was an exciting time for me, as I was Stage I and looked forward to really getting involved, on a national level, with lung cancer advocacy and activism. Then, on April 2, a CT Scan revealed that I had mets to my medialsteinal lymph nodes. A follow-up PET Scan revealed that mets was more extensive and included the lymph nodes in my neck, groin, diaphragm, and around my heart. After a needle biopsy of the lymph nodes in my neck, I was restaged to Stage IV. I started chemo (carbo/taxol) on May 5. Because of the chemo and the subsequent side effects, I had to step down as Co-Director of Lung Cancer Survivors for Change. I suddenly went from being one of support to being one who needed support. My activity on this message board dropped drastically. I was hoping, once the chemo was over, I would be able to take up the torch and become as active as I had been in the past. This, of course, is not to be, as I now face treatment for liver mets.

I still hope, that in my lifetime, lung cancer will get the attention it so drastically deserves. I would like to see the death rate start dropping, more effective treatments becoming available, and more physicians specializing in lung cancer. All this is still possible, but not probable, in whatever time I have.

Those of us, who are able, need to continue making our presence known to Congress and to our state legislators. We need to continue whatever fund raising activities we have been involved and step up the recognition in that area as well. We need to continue working with such organizations as ALCASE, American Cancer Society, and the American Lung Association, to name a few (there are other organizations also). I can not stress enough how important family members are to this cause. They are going to be the ones, unfortunately, who will survive those of us with lung cancer. Our legacy can not die when we do. It needs to continue.

[-Cheryl-]

Dave,

I so agree with you, but I challenge everybody to "do something!" Even if it is only making a donation of $10, if everybody did something then perhaps the government would pay as much attention to us as say....breast cancer research. I was shocked to see that gov. funding for lung cancer, which causes the highest number of deaths in the world, is so ignored. Interestingly, most of the states are spending tobacco settlement money on everything from roads to raises, and not on what the money was intended- tobacco awareness and smoking related diseases.

I think if we all did something, regardless of our stage, then we will be heard, and closer to finding a cure for this dreadful disease. I, like most of you, have questioned why I have this disease? Who knows, but I do know that by doing something about it can be very empowering. My cancer has now taken on a new purpose. I have decided to apply for some of that tobacco grant money and educate kids about tobacco and it's dangers. I have heard many people say.."If I can just save one life..." My goal goal is bigger than that! I want help as many people as I can from ever having to endure this suffering.

I challenge you all to do something. Make a commitment and verbalize it. I think we can all brainstorm ideas on this board to help one another. Don't let this disease take your life or the lives of your loved ones in vain. Please take charge and do something!

Cheryl

[cathyr]

Dave,

I could not agree more with you.

I also have to tell you that I have so much respect and admiration for you. You have given me strength and courage to face this disease.

Bless you and all the work you have done to bring this disease to the surface.

Your friend and fellow survivor.

CathyR

[MO_Sugar]

(((((David))))),

You and others on this board have given me the courage to fight this beast with everything I can throw at it. God Bless.

[Ry]

Very well said Dave.

[bobmc]

Yes, David very well put,!!! you and the family have a happy Thanksgiving

God bless and be well,

Bobmc- NSCLC- stageIIB- left pneumonectomy- 5/2/01

"absolutely insist on enjoying life today!"

[dadstimeon]

Hi Dave and Cheryl,

Good points from both of you. I agree it is up to all of us regardless of what stage we are at or if we are a family member or friend because lung caner affects everyone involved. To do whatever we can no matter how small or how big. Everyone can make a difference in there own way. Peace, take care and God Bless.

Rich

PS: Also whenever someone asks me what I want for my birthday or Christmas I tell them to make a donation at ALCASE (ALCASE, the Alliance for Lung Cancer Advocacy, Support and Education, is the only national voice for lung cancer patients) for Lung Cancer in my name. It means more to me then material things.

My 2-cents in battling cancer: Stay positive and focused. Never give up, never give in. Take one-step and one day at a time. Never take no for an answer. Enjoy life to it’s fullest. Lots of laughing and yes even crying. It rejuvenates the body. And a lot of praying to the big guy.