Category Archives: advocate

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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Precision Medicine 101

Have you heard of Precision Medicine? If you haven’t, you are certainly not alone! But, it is very important for you to know it exists, what it is, and how it can benefit you.

What is precision medicine?

The National Institute of Health (NIH) says this about precision medicine:

“Precision medicine is “an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person.”1

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Taking a Little Break from Cancer with Other Cancer Survivors

Have you ever visited a Cancer Support Communities (CSC) clubhouse? Every time I go, I think I will be more active. I went yesterday and once more, I am vowing to go more often.

No one faces cancer alone

You may know CSC as Gilda’s Club, named after the famed comedian, Gilda Radner, who passed away from ovarian cancer in 1989. Regardless of the name your center goes by, its mission is to ensure that “no one faces cancer alone.”

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What Will They Say?

Several days ago, I got a text message telling me that a former colleague and friend had passed away unexpectedly. I had seen her recently and she was her usual happy self. We made plans to get together for lunch soon. I guess none of us realized that her days here on earth were coming to a close.             …More

A Day in History

Five years ago today, May 8, 2013, I quit getting chemotherapy. I have to say, it was a happy, happy day for me to learn that I would not be getting chemo any longer. Chemo and I … we didn’t deal well with one another. No matter how many anti-nausea pills I took, no matter how long I took steroids, no matter what, I was sick, sick, sick from my treatments.

I’ve never been a sickly person. At all. I didn’t even have a primary care doctor that fateful day when I finally went in to see why I kept gaining weight … and we discovered that I had late-stage lung cancer. I hadn’t seen a doctor for 10 years or more (yeah, I’m one of those people who definitely didn’t take care of themselves with regular screenings or anything else).

So, when I was so sick from chemo, I didn’t deal well with it. I don’t know, maybe even if I had been more sickly, I still wouldn’t have dealt well with it! There were times, many times, when I wondered if it was even worth going through the treatments. I was spending way too much of my very limited time (my oncologist projected 4 months before I passed away) in bed, too sick to eat or drink or do anything except try to sleep away the misery.

At the same time as I was celebrating the fact that I was getting a break from chemotherapy, there was definitely some fear associated with quitting treatments! No treatments meant nothing was being done to hold those tumors at bay. Sure, they’d responded and shrunk some during treatments, but that was because we were bombarding them with poisons!

My doctor hoped that I could take a break from the chemo and that the tumors would stay stable or, if they grew, would do so slowly. Unfortunately, as we would discover when I had my next scan, his hopes were not realized. All of the progress we had made against the tumors was lost during the short time I was not receiving treatments.

As I sit here today, pondering my life and the fact that I am still here, I am grateful that I was diagnosed with my cancer when I was. It is sobering to think that if I had been diagnosed only one year earlier, I would probably be dead.

Stop and think about that for just a moment. It is hard to think about. And, many of us have friends and loved ones who have succumbed to the disease, even recently. They were diagnosed too soon to be saved. Why? Well, partly because lung cancer is a really tricky disease. You often don’t have symptoms until you have only months left to live. So, doctors are faced with an uphill battle because late-stage cancer is really difficult to treat.

Another reason why we are still losing way too many of those diagnosed with lung cancer is because it is so very severely underfunded. Researchers are making such tremendous progress in finding new ways to treat this insidious disease, but they are limited by the lack of money available to them. It boggles my mind to think about what they could be doing if they had the kind of money that breast cancer or prostate cancer gets each year.

So, the purpose of this post is two-fold. First, I want to thank everyone who generously gives to help fund research. You are quite literally lifesavers. If not for your heart and your help, people like me would not have had cutting-edge therapies to try when chemotherapy quit working. Thank you, thank you, thank you! From the bottom of my heart, thank you!

The second is that I want to encourage everyone to give to lung cancer research. It doesn’t have to be much. If everyone I know gave only $5 or $10, it would add up to a reasonable amount of money. If they shared with their friends and their friends gave only $5 or $10, the cost of a Starbucks and a donut, the funding would begin to snowball and just think of where we might be in finding … dare I say … cures … or, at least, therapies that could help treat this disease as a chronic illness instead of the killer it still is.

It hurts my feelings and boggles my mind that I have so much trouble getting people to give to this cause. It hurts my feelings because I take it very personally. It’s MY LIFE I am advocating for! Opdivo is keeping me alive right now. But, when it quits working, there is not another treatment for me to try. Selfishly, I want researchers well-funded so that I have some more options when that time comes.

It boggles my mind because even those who contact me and want me to pray for or talk to a loved one of theirs who has been diagnosed don’t give toward finding better therapies. If not those who either have someone living with or who has died from lung cancer, then who can we expect to help fund life-saving research?

Where can you donate? A few of the foundations that I support are:

Bonnie J. Addario Lung Cancer Research Foundation

LUNGevity (if there is a way to designate that you’re donating on my behalf, please do!)

Lung Cancer Research Foundation (where Free to Breathe merged) – I will be posting a link to a donation site on my behalf soon)

Lung Cancer Alliance (if there is a way to designate that you’re donating on my behalf, please do!)

Cancer Research Institute (not lung cancer specific, but cutting edge in immunotherapy)

 

Advocating for Lung Cancer to Get “Equal Time”

I am on a forum with people who have all kinds of cancer. A lot of the members have had breast cancer so many posts there relate to issues concerning that disease.

Recently, someone posted a message saying that the federal government’s Office on Women’s Health (OWH) had deleted all references to breast cancer, despite once having a rather robust amount of information available. Those with breast cancer were quite upset about the information being removed. Honestly, I thought it was a little odd, too, that it would be removed.

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