"WTF" to Join Forces with Bonnie J. Addario Lung Cancer Foundation

I am very happy to announce that my mom and I, and the "WTF (Where's the Funding) for Lung Cancer?" campaign, are partnering with the Bonnie J. Addario Lung Cancer Foundation.  When I first launched my "WTF" campaign, my intention was to start my own foundation in my mom's name. Thanks to many of you, I received a great lesson in the "state-of-lung-cancer-foundations." I learned very quickly that creating another lung cancer foundation, and everything I wanted to accomplish with it (which is just about everything), may further dilute progress in reaching my ultimate goals: increasing awareness and funding for lung cancer. I want progress now! 

Here is my video message to all of you!
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I now know for certain I don't want to actually run a foundation. (I am so not a numbers person... I'm a creative). I want to use my skills and talents to continue to increase awareness, which the "WTF" campaign is certainly doing, and increase funding for lung cancer in my mom's name NOW. (No re-inventing the wheel, Jen, let's just get moving already! Lung cancer doesn't have spare time.) So, after much research and constructive conversations with many of you, my mom and I believe we found the perfect match by creating the Leslie Lehrman Fund of the Bonnie J. Addario Lung Cancer Foundation. My mom's name is attached to this fight through the naming of her fund and fundraising dollars immediately go to a wonderful, well established foundation that is committed to early detection, research, education, prevention and treatment.

I applaud all of the wonderful organizations, foundations, etc., that are working so hard to achieve the same goals for lung cancer.  We are in this fight together!  

Getting back to that "funding" issue...many of you, at the beginning of my campaign, were interested in buying "WTF" merchandise.  Well, now we know where those dollars will go---so go get your "WTF" stuff!  Great holiday ideas...even for your dog! No, I'm not kidding. Here is the link to my store:  http://www.cafepress.com/wtf_lungcancer. This is just one small way to raise some funds. More to come on that front. Much, much more! 

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Comments (7)
Posted 1 day ago

Yep, That's Me Whispering into President Obama's Ear

"Pssst.  'WTF' (Where's the Funding) for Lung Cancer?"  You too can create your own picture and message with the Prez. Here's the challenge: All "WTF"-ers create a picture with the same message and send it to the President.  You are able to send an additional message as well and send it directly to the White House (supposedly). Post your picture that you created on our "WTF" Facebook Group. http://www.facebook.com/home.php#/group.php?gid=161802317682
This will certainly make a statement! 
Here's the link to create the picture: http://apps.facebook.com/barackandme/

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Posted 2 days ago

Yay! My Mom Has Lung Cancer. What a Great Story Angle!

Unfortunately, it is the truth. The pain seen on my mom's face (see picture below) - and the fact that she has never smoked a day in her life and has Stage IV lung cancer is the best "gift" the lung cancer community could possible have. Of course, she is not the only one that makes for a good story angle. That's the whole point here, folks. According to the Lung Cancer Alliance, over 60% of new lung cancer cases are never smokers or former smokers, many of whom quit decades ago.

Since I have started my "WTF" (Where's the Funding) for Lung Cancer? campaign, I have had a tremendous response from lung cancer patients, lung cancer organizations/foundations and the news media. I am on a mission to increase awareness and funding for lung cancer --all of those with lung cancer: smokers, former smokers, never smokers. I am telling my mom's story, and providing a forum and center of connectedness for all those with lung cancer to share their stories as well, in order to accomplish these goals.

I have also received some anticipated backlash from some in the lung cancer community that I am focusing too much on the fact that my mom never smoked. I am told I need to stop labeling those with lung cancer as never smokers, smokers and former smokers, as this is only perpetuating the stigma that looms over lung cancer's head. I honestly do appreciate the feedback and passion from everyone I hear from, whether it's positive or negative. So, please keep the comments coming. This is not easy stuff. I thought it may help to explain the rationale behind my campaign.

Once again, this is a personal campaign I am waging. I am telling my mom's story to make a difference. My mom is a never smoker. My mom has inoperable, incurable lung cancer. I won't stop mentioning the fact that she has never smoked - ever. And, this should actually be viewed as a very positive move. Here's why.  My mom's story (and all those other 60%-ers) is the "best" thing to happen to lung cancer. Her story is the best, and only (in my opinion) vehicle to start the long process of removing that stigma and getting people to take action. And, on a positive note, this strategy is actually working.

As you see here, Senator Ben Nelson (D-NE) from Nebraska (where I live) joined as a co-sponsor of the Lung Cancer Mortality Reduction Act.  You also see the sub-head to that press release says, "Visit by Lung Cancer Alliance Advocate, Kevin Atkinson, Spurs Action." Kevin Atkinson is the brother of John Atkinson who recently died of lung cancer. John was 40 years-old and also a never-smoker. John was also a friend of mine. We spent a lot of time together while working at Omaha's CBS affiliate, KMTV. I was a reporter. He was a photojournalist. He was an amazing person and an incredible advocate for lung cancer awareness. John also knew that the key to making any strides in lung cancer awareness was to tell his story. A 40 year-old husband and father of three who had never smoked had lung cancer. This is news.

John's tenacity and message resulted in him winning the Golf Digest challenge to play at Torrey Pines with Matt Lauer, Justin Timberlake and Tony Romo ahead of the US Open. The Lung Cancer Alliance Survivors Community and his many friends and family members rallied around this contest and helped him to win it by a landslide. John was able to bring awareness to lung cancer by his participation in the tournament, and subsequent interviews on the Today Show and other major news and radio shows. You can see Matt Lauer's story on John's death and the "state of lung cancer" here. We miss you John, terribly.

So, what does all of this have to do with Senator Nelson?  Everything. As a former reporter turned PR practitioner - with some experience in the political arena - here is the bottom line: Had John been a smoker or former smoker, no senator would have given Kevin Atkinson the time of day to talk about his brother. The news media wouldn't have latched onto his story.  Again, I am not bashing smokers or former smokers. I am simply keeping it real.

I have interviewed Senator Nelson several times and personally like him, but lung cancer is a totally different beast. You know, that damn stigma. Politics is also a totally different beast. And, what politician wants to associate himself with that stigma?  Senator Nelson now has a logical and statistical reason (or an additional one) to support the Lung Cancer Mortality Reduction Act. He understands it's not just a smoker's disease. He understands that by co-sponsoring this act, he may get a little flack, but not enough to make him lose re-election or tarnish his reputation. Now, have I completely perpetuated the negative stereotype of politicians? Perhaps. I am more than happy to hear from Senator Nelson to better understand his decision. I am willing to bet he would even admit the difficulty of being a politician in favor of change for lung cancer legislation. For that, I thank him.

The stigma that looms over lung cancer has dropped a level, thanks to John and his family.  No doubt, others have helped contribute as well. All I can say is keep it up.  I know I am going to. That's the whole point of "WTF" (Where's the Funding) for Lung Cancer?  Simple. Politically incorrect. Straight-to-the-point.  There is no time for "spin" when it comes to lung cancer. While PR people may have the reputation as "spinsters," I am so NOT one.

So, dare I say, thank goodness my mom has lung cancer?  Well, yes...and Hell no!  But, educating and convincing those in power that people like John and my mom have lung cancer is really the only "in" we have to work with right now. It's the only way to open the door to even present an opportunity for a rational dialogue about lung cancer and that ignoring it is no longer an option - regardless of how people get it. 

According to the American Cancer Society's most recent lung cancer statistics, in 2009, an estimated 116,900 U.S. men and 103,350 women will be diagnosed with lung cancer and an estimated 88,900 men and 70,490 women will die from lung cancer. Again, 60% of those are never smokers or former smokers. This is my mom. This is her story. It's the angle I am running with - for ALL lung cancer victims. I hope you run with me.

Sincerely, Jen

   
Click here to download:
Yay_My_Mom_Has_Lung_Cancer._Wh.zip (78 KB)

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Comments (11)
Posted 5 days ago

Are You Getting the Best Possible Treatment for Your Lung Cancer?--Want Your feedback!

 

For most lung cancer patients, the answer is a flat out, "I don't know." Do you have faith that your oncologist(s) has thoroughly researched your particular lung cancer situation and put you on the best possible treatment plan? I really want to hear your feedback (on our "WTF" Facebook page or here on my blog) I will be creating a poll based upon your responses to dig a little deeper. Thanks a million. We are making a difference.
Keep spreading the "WTF" word...and some big news is upcoming! :)

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Posted 6 days ago

Lung Cancer's a "Beach"

Here's David Beach's lung cancer. He wears it on his sleeve...I mean his chest. David is founder of 12seconds.tv, he works for Yahoo and he's surviving lung cancer. That T-shirt ROCKS. I ran into David on Twitter.  If you are on Twitter, you can follow David at @beach. And, if you're not already following me, I'm @wtflungcancer!

<br>my lung shirt on <a href="http://12seconds.tv" >12seconds.tv</a>

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Posted 6 days ago

DIY Healthcare: The Project All Patients Must Tackle

(This is a flashback to January 12, 2009)
I headed back home to chilly Omaha today after a 4 day stay in sunny Phoenix where my mother lives. It was hard to leave, but I hope I was of some help and comfort to her and her husband as they received latest test results. It certainly helped me to be part of the process.
As I drove out of the airport parking garage, with snow blustering everywhere and my body having to readjust to Nebraska weather, the parallel struck me: My mom is once again entering the cold world of chemo and all that comes along with it. Man, what do I have to complain about - a little wind, some ice and snow? C'mon Jen, knock it off.
You may already do so, but, I can't reiterate it enough: ALWAYS bring an advocate to appointments with you...someone who can ask questions, get clarification, ensure details are confirmed for the next appointment, etc...
It truly is a DIY healthcare system. If you don't watch out for yourself, be proactive and make sure the doctor's and their staff are DOING THEIR JOBS, you will get lost in the cracks. There are great doctors out there. There are bad ones. There are great staff members out there. There are bad ones.
Somehow, my mom, who has Stage IV NSCLC, managed to attract all the bad ones throughout her "care." I'm not being overly dramatic. I'm not embellishing. If one were to write a book, which I plan to, on everything she has endured, readers would never believe it was a true story. I only wish it were fiction.
It is so incredibly sad we feel helpless in the healthcare system to begin with---then add lung cancer on top of it--that's a major double-whammy.
My mom just wants to pound on the keyboard, as she wants to write SOMEONE for help...or call someone for help....someone who will truly listen. Where are these people? Well, unfortunately, right now, they aren't out there---or at least they don't know they will be forced to listen in the near future.
What we can do ourselves is bring more awareness and urgency to lung cancer research and hold hospitals, physicians, nurses, etc...accountable.
While it may be a DIY healthcare system, we can DIT: Do it Together---and we WILL.

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Comments (7)
Posted 10 days ago

TV Interview Tomorrow for "WTF" Campaign


I have an interview with our FOX affiliate tomorrow about my "WTF" campaign.  I'll be sure to post after it airs. Keep spreading the word "WTF"-ers.

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Posted 11 days ago

Shine a Light on Lung Cancer Vigil

Great media coverage. Way to go!

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Posted 12 days ago

Ok NFL, Where is Your White? No, I Mean Your Lung Cancer White.

So, I guess I just have to assume that the white socks and the white in the NFL's jerseys are in support of the fight against lung cancer? Hardly. C'mon people. Get over the stigma. Get smart. Lung cancer is THE number one cancer killer and THE least funded. And, news-flash, you don't even have to smoke to get it. My mom is living proof of that. Here - read her story. There are thousands more. Take a look at my personal campaign called, "WTF" (Where's the Funding) for Lung Cancer? I started it last week and more than 1,000 have already joined. Take a sincere look. I appreciate the NFLs support of cancer...now is your chance to really show the toughness behind those pads. I'll be moving my way up the NFL ladder with this issue. Tom, not picking on you personally. You simply make for a very good visual! :)

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Posted 13 days ago

There May Be a Few Monsters

My mom just called with her CT scan results.  She said, "The results came back 95% good, but there are some questionable areas." She said there is nothing showing in the lung, but a couple of lymph nodes have increased in size.

In radiology-speak:
Interval increase lymph nodes right supraclavicular region and mediastinum posterior to the trachea of concern for metastatic involvement.

The report says to correlate a PET as needed and that the right-sided lymph nodes may be clinically palpable and could potentially be biopsied.

My mom says they will determine what to do next week when her doctor is back in the office.  They could do the PET, a biopsy or just wait another four weeks to see if the lymph nodes continue to grow.  So, another week of waiting, wondering and trying to focus on that 95% goodness - not that 5% pure monster madness.

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Posted 13 days ago