Listening in on what a Member of Congress Says about Cancer

Have you heard of the American Association for Cancer Research (AACR)? Every September, they present a Cancer Progress Report to Congress. I just spent some time on their Web site, listening to some of the 2018 survivors’ stories. This year, The Honorable Mark DeSaulnier, D-California was among those featured.

Taxpayer dollars funding research

Maybe it is because of my background in accounting, but I was struck by the way Representative DeSaulnier spoke about the “return on investment” that Americans get when taxpayer dollars are spent on National Institutes of Health (NIH) programs.

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The End of Another Lung Cancer Awareness Month Arrives

Well … here it is again … November 30. It is Cotton’s birthday – she’s 10 today … it was my uncle’s birthday – I’m not sure how old he would be now, in his 90s somewhere – and it is the last day of lung cancer awareness month.

I wasn’t as active this month as I am sometimes with getting posts made to Facebook; life intervenes sometimes. I always hope to bring awareness to anyone who will listen – anyone with lungs is susceptible to lung cancer, it is the most deadly cancer by far, it is the most underfunded cancer by far (if you take into consideration how many tens of thousands it kills each year). Something needs to be done.

Loss of another Good One

Yesterday, one of the biggest advocates out there passed away from lung cancer. Matt Ellefson has been a tireless and fearless leader for nine years. He will be greatly missed, but his legacy will continue through the nonprofit he formed, SURVIVEIT. I rest easy that he is in the arms of Jesus. He was a dedicated and devoted Christian.

There’s been a discussion on lungcancer.net about whether the sudden death of a child (albeit a 43-year-old “child”) or a lung cancer diagnosis is worse. I believe losing a child suddenly is worse, but some don’t. Some feel that their diagnosis is absolutely the worst thing that has ever or will ever happen to them.

Not me. Even if my son hadn’t just died, I would not say that lung cancer is the worst thing that ever happened to me. I honestly don’t know what I would say was the worst thing … I am a glass-half-full kind of person and I dwell on the positives of every experience, including a lung cancer diagnosis and including the death of my only child.

Too Many Die

Anyway … this post is about Lung Cancer Awareness Month coming to an end. I always hate to see it go. I like seeing everyone’s posts. Some choose to highlight people who have had lung cancer – either who have passed away from it – 433 a day do, you know – or those of us who are fortunate and still alive, fighting every day … or a few lucky ones who are enjoying remission.

Others post facts. That’s usually what I do. I try to make people aware of the gross underfunding the disease gets. And the fact that anyone, smoker or nonsmoker, can get lung cancer. Young women seem to be the most commonly diagnosed these days. That’s not scientific, just an observation. I guess I could look up stats for it, but they’d be old anyway.

Breast Cancer vs Lung Cancer

Breast cancer attacks more women than lung cancer, but most people recover from breast cancer. It isn’t an easy road to recovery, by any means, but there is light at the end of that long tunnel.

Lung cancer kills WAY more women than breast cancer does. Usually within the first year after diagnosis. No matter how often or how loudly we try to shout this information, it apparently falls on deaf ears.

What’s the Answer?

I just don’t know what the answer is. We try going to Congress and mostly we just leave frustrated. We try telling doctors, friends, family and coworkers … well, our friends, family and maybe our coworkers – people close to us – get the picture, understand on some level. But doctors are still grossly misinformed and therein lies much of our problem.

Too many doctors think smoking causes lung cancer. Everyone knows smokers deserve anything they get. So, there is no need to fund research for the world’s most deadly cancer. It is simply taking out those who deserve it anyway. Wow.

Smoking is a nasty habit, but there are other nasty habits. No one is so maligned by theirs. Maybe it is because cigarettes stink so much. They offend those of us who don’t smoke. So, is the attitude that if someone has the audacity to offend me with their smoke then they deserve to die a somewhat horrific death?

What’s this world come to?

Taking the Bull by the Horns and Advocating for Yourself

I got a post from someone new to the lung cancer world today. I was struck by how much smarter she is than I was when I was first diagnosed.

Trusting my astute PCP

After I was diagnosed by my primary care physician (PCP), I simply did what she told me to do. By the time she delivered the bad news that I had lung cancer, she already had an appointment set up for me with an oncologist for the next day.

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Frustration Boils Over … One more Time

For some reason, every time one of my friends knows someone with lung cancer, they turn to me for comfort. I don’t really know why, except that they know I have “been there done that.” I’m very happy to help in any way I can. More often than not, the person with cancer doesn’t want to talk to me, but their loved ones do. I guess I give them some perspective on what it is like to live with lung cancer.

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Lung Cancer Drives My Passions

Before I got lung cancer, I was passionate about grant writing for K12 education and running my dogs in agility. As a lung cancer patient, I am very passionate about the following five things…

Advocating for funding to support research

Anyone who knows me or reads much of what I write knows that I am absolutely consumed with trying to get more money for lung cancer research. Not only do I attempt to fundraise for various lung cancer-related organizations, but I also write to my state and federal legislators on a frequent basis. I always request funding in amounts as significant as the death rate from lung cancer demands.

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I’ve Got Joy, Down in my Heart!

I just read a draft of a blog post I wrote awhile back and the old children’s song we used to sing in church came to my mind, “There’s joy, joy, joy, joy, down in my heart, down in my heart, there’s joy, joy, joy, joy down in my heart, today!” I don’t know about you, but that little ditty is now going through my mind, over and over again. And, it is making me smile!! And, sing! Out loud! Loud! (My husband is going to wake up and wonder what in the world has happened to his wife!!)

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Dare We Say the “C” Word at the Same Time as Lung Cancer?

When I was diagnosed with lung cancer, the chances that a late-stage lung cancer patient would live five years was merely 4%. In fact, the American Lung Association, even today, gives the following survival rates:

“The five-year survival rate for lung cancer is 55 percent for cases detected when the disease is still localized (within the lungs). However, only 16 percent of lung cancer cases are diagnosed at an early stage. For distant tumors (spread to other organs) the five-year survival rate is only 4 percent.”1

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If You Toss Enough Seeds, Maybe One will Land on Fertile Ground

I am dumbfounded right now. I just finished writing a blog post that is highly critical of my Representative in Congress. I now have to retract what I wrote (it was never published) and tell a slightly different story. I am delighted to have to make the change.

Here’s the story

I went to Washington, DC last week. I joined about 150 others who were at the Lung Cancer Alliance 10th Annual Summit. The purpose of our meeting was to lobby our Congressional leaders to (1) cosponsor the Women and Lung Cancer Research and Preventive Services Act of 2018 (S. 2358 / H.R. 4897) and (2) restore $6 million in funding to the Lung Cancer Research Program within the Congressional Directed Medical Research Program administered by the Department of Defense (DOD).

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Women and Lung Cancer Research and Preventive Services Act of 2018

In today’s political climate, it isn’t often that you hear about a bill that enjoys bipartisan support, but the Women and Lung Cancer Research and Preventive Services Act of 2018 does. The bill has been introduced into the House (HR 4897) and the Senate (S2358). Now, it is up to us to try to get our legislators to show their support of the bills by becoming co-sponsors.

Why is this bill important?

I believe it is critical for this bill to pass through Congress. Essentially, it is asking for the following:

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