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

November 9, 2009 by in Uncategorized

momcrying

Unfortunately, it is the truth. The pain seen on my mom’s face 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.

Yep, trying to take the pic ourselves. Neither of us has long arms!

Yep, trying to take the pic ourselves. Neither of us has long arms!

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.

John Atkinson

John Atkinson

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 Atkinson, 11/10/68 – 06/11/09, Photo © Scott Halleron/Getty Images

John Atkinson, 11/10/68 – 06/11/09, Photo © Scott Halleron/Getty Images


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. Below is Matt Lauer’s story on John’s death and the “state of lung cancer” here. We miss you John, terribly.

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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, very few senators 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? While we are some seeing positive steps from our members of Congress, it’s still not enough.

Senator Ben Nelson

Senator Ben Nelson


Senator Nelson now has a personal, logical and statistical reason (or an additional reasons) 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.

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The stigma that looms over lung cancer has dropped a level, thanks to John and his family and other advocates who pound on Washington doors. 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.

mombobgirlsb-day
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

9 Comments - Leave a comment!
  • Jean Steele

    Dear Jen,

    Finally a face to the solution. My niece found you site on facebook and became a fan, and in turn so did I. My Wes age 47 was diagnosed w/ Stage 3b Lung Cancer the 1st of October 2009. The cancer today in now in the brain. Yes, my brother is a smoker. However, I do not believe that cigarettes are the end of the story. I believe with funding for research, they will find that cigarette have little to do with Lung Cancer. My brother was born with a heart and lung defect that he was not aware of for most of his life. I believe DNA has more to do with Lung Cancer. I know that in MA, there a clinial trial going on where they have found that taking a sample of the tumor and doing it’s DNA, it tells them which chemo to use and it has shown tumor shrinkage. All a friend of mine, just yesterday told me that a oncologist has told a non-smoker lung cancer patient of his that nicotine from cigarette have been used to also shrink tumors. So I am grateful for however you need to spin this to get the funding. Soon in the future, smoker’s with Lung Cancer will not be looked at as, (you cause this, so you derserve this death sentance attitude). So Thank you for all you do. If there is anything I can do. Just e-mail. I’m not an advocate yet. I’m waiting for a program that needs my help. I have signed up on Lungevity, Lung Cancer Alliance and any one else that I can be of service.

    God bless to you and yours,

    Jean Steele

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  • Rmayea2

    my mom just passed from metastic lung cancer.She hadn’t smoked in over 20 years and before that it was very little.We are a wounded family and hope that no one ever picks up that first cig.We are devastated beyond sorrow.

  • http://www.facebook.com/joecaridi Joe Caridi

    Jennifer, You know I agree with you on this issue.  As a former health educator, I can tell you that the public health community is responsible for the stigma.  We have done such a good job of convincing everyone that if you smoke you will get lung cancer. The result, surprise, surprise, is that everyone now believes that smoking is how you get lung cancer.  This of course leads to the belief that if you smoke, you brought it on yourself.  This is not dissimilar to the trend I hear in car accident deaths reports when you hear the reporter routinely mention whether the driver and passengers had on a seat belt.  I can see us all listening to a news story about a horrible car accident where there was a death and just waiting to hear if the dead person had on a seat belt.  When you hear, “the victim was not wearing a seat belt,” you can’t help but be a little relieved.  ”Well, I always wear a seat belt, so I won’t die in a car accident.”  This same logic holds true for lung cancer and smoking.  We can remove ourselves from the risk, if we are reassured that we are not doing anything wrong that would increase our risk.  It also, reinforces the blame the victim mentality, thus leading to lower funding for new treatment research.  I think we have to look back to the fight on AIDS in the 80′s in order for the lung cancer community to address this.  There was zero funding for AIDS research when it was a homosexual or drug user disease.  But once “regular” people started getting it at no fault of their own, people became scared and the political will was born to fund research for treatment and prevention.  Lung Cancer is in a similar position to AIDS.  We have to lift up every victim of this disease that is not a smoker and create fear in the hearts of “regular” people that they could get lung cancer to and at no fault of their own.  It is only then that the political will to properly address this horrible disease will be created.  

  • http://www.facebook.com/laurie.m.marshall Laurie Marshall

    Well said. People who think YOU are perpetuating the stereotypes are completely missing the point. There shouldn’t BE any stereotypes – there should just be action, and research dollars.
     

  • Pam

    This is an amazing article. My dad passed away from Lung Cancer and he too never smoked a day in his life. When I mentioned that on the “Where is the Funding for Lung Cancer” group on Facebook (just in telling my story), I was met with harsh comments. I left the group as it didn’t feel like a welcoming community. If the Facebook group can’t even support each other, I worry about us actually coming together to find a cure and funding. Thank you for being brave in telling your story. 

    • http://www.wtflungcancer.com/ Jennifer Windrum

      Hi Pam. I want to assure you thatw hat happened today is not typical whatsoever. The FB groups absolutely does support one another. I responded to all the chatter in this manner: 
      Ok, HOLD THE PHONE. Everyone. I did not post my blog post to cause tension or to divide this group. That’s THE last reason. I posted it because I want to make clear my strategy for creating change for all those impacted by lung cancer. WTF has come a A LONG way since I started it in 2009. In the beginning, people were a bit divided and many didn’t feel worthy even becoming advocates of this awfuldisease because they smoke or used to. WE ARE OVER THAT. We have moved way beyond that. 

      It has been an incredible journey to see people finally stand up, feel good about themselves and fight for a cause that desperately needs voices. I don’t care what the cause of lung cancer is – NO ONE deserves it and I am fighting for everyone – and that is the only way we are going to make progress – as one unified voice – saying the same message. We are beyond making insults. It’s also easy to read into something with just the written word, so we also need to be careful about that. But, with such an emotional and heavy topic, I understand the need to vent – and I want people to vent – but in a constructive way. This is a safe place for everyone with lung cancer or has been impacted by it. I won’t let it be anything but. I am sooooo proud of everyone here. I can’t even tell you how much. Here is what I wrote for the Huffington Post about this group (full post at the link):

      “When I first launched the campaign, many survivors/advocates weren’t comfortable, or didn’t feel “worthy” of publicly raising their voices against lung cancer. Many smokers and/or former smokers lived the stigma, believing they brought the disease upon themselves, and, therefore, “deserved” lung cancer. Look, NO ONE deserves lung cancer. NO ONE. Early on, we had many powerful and sometimes heated discussions about the whole “smoker/former smoker vs. never smoker” debate. It was raw discussion that needed to take place, so it did. Today, that issue is a non-issue. The shame and self-blame are gone. “WTF-ers” are mobilized. They are empowered and fighting harder than ever — as one unified voice. I literally stand in awe and amazement at all that this incredibly loyal community has endured and continues to overcome. They always stand at the ready to go full guns on our next social media campaign and/or challenge to make a huge statement: “Lung cancer is silent no more. We won’t settle for status quo.” THIS kind of momentum is creating true and meaningful impact.”

      THIS is what the WTF community is. THIS is what it will remain. 
      Here’s a link to entire blog post that explains truly what the WTF community is and what it has accomplished. I so hope you can rejoin us. We need ONE collective voice. http://www.huffingtonpost.com/2morrowknight/jennifer-windrum-wtf_b_841768.html
      I hope you know you are welcome at any time. Many hugzzzz. 

  • Liz

    what do u think causes it besides smoking obviously, what do u think caused your mom and others who dont smoke to get cancer? honestly curious, all i can think of is environmental contaminants, idk

  • Sokaitlynsayys

    My mom was also a never-smoker.  Whenever I tell people how she passed away, I always feel like I have to quickly assure them that while she died from lung cancer, she never smoked.  If I don’t say it, then they will inevitably ask.  Without a reason for why she got this lung cancer, I have been scared ever since I was nine years old (when she passed away), that I would get lung cancer, too.