Category Archives: advocate

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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Everyone Needs Support Sometimes

When I was diagnosed with lung cancer, I didn’t know anyone else who was still alive and fighting the disease. I started searching around and ultimately landed on a group where I feel totally at home – it is called WhatNext.

I am going to post two links below that will help you know if you think WhatNext will be a good fit for you. I go to a lot of different lung-cancer related forums, but I spend most of my time on WhatNext. It feels like home to me.

On WhatNext, there are caregivers and loved ones, survivors, and people from the medical field for all kinds of cancer from skin cancer to liver, lung, or lymphoma cancers. Take a look at the information below and please join, if it sounds like a place you’d like to be a part of!

This link tells you a lot of the benefits of the group in an advertising way:  https://www.whatnext.com/ilp/lungcancer/?campaign=AMLC

SandiA is a Stage 4 Melanoma survivor who is active on the site. She tells you why she loves WhatNext so much!

Let me know if you joined the group because you saw this post! I look forward to seeing you! I think you’ll love it there as much as I do!

https://www.whatnext.com/ilp/lungcancer/?campaign=AMLC

Advocating for Fairness in Lung Cancer Funding – Life and Breath Rally

About the Life and Breath Rally

Needed: EVERYONE — No joke. We need everyone’s voice and support.

Date: Thursday, April 26, 2018

Time: 10 a.m. to noon

Place: Capitol Hill, Washington, DC
(First St. SE & Independence Ave. SE – on the east side of the Capitol building)

Nearest Metro Stop: Capitol South on the Orange, Blue and Silver lines

Register here: https://www.LABrally.eventbrite.com

Everyone needs to try to come if they can !  If we don’t raise awareness, who will? We have to get the word out that funding for lung cancer is not equitable and that people with lungs get lung cancer, not just smokers!!

If you cannot attend, please, please, please write to your legislators. If enough of us demand equitable funding for this national disgrace, it will happen.

Remember, 1 in 17 women and 1 in 16 men will be diagnosed with lung cancer. Which one of your friends or family members will it be? Don’t you hope that there is a treatment, if not a cure, to save them?

Lung cancer affects us all. And it is up to each and every one of us to do our part to see equitable funding for research.

Busy, Fun Week

I have already written about my excitement on Monday when I got to be interviewed for NBC Nightly News. What fun that was!!! But, it was only the beginning of an incredible week!

First Monthly Opdivo Treatment

I had to rush to my treatment appointment after the NBC interview. For nearly five years, I have gotten my treatments every two weeks. My friends, that is a lot of doctor appointments, especially for someone who previously avoided doctors like the plague. On Monday, I started getting a double dose of Opdivo. I will only go for treatments once a month.

I am so excited to have more of my life returned to me. I was a little nervous though about potential side effects. Well, it is Friday night and I have felt fine the entire time since the treatment. Yes!!!

Fun in the Sun (and the Bluebonnets)

On Tuesday, my friend Deanna drove three-plus hours to meet me in Ennis, Texas. Ennis is known for its beautiful patches of bluebonnets, the Texas state flower. Now, if you live in Texas, you live for bluebonnet season! It is a rare Texan that doesn’t head out to the bluebonnets with their kids, their dogs, their grandmas, their husbands or wives for pictures.

Deanna and I had so much fun! She lives in Florida now so I don’t get to see her often. I was blessed that she spent one of her days of vacation in Texas with me. We had a blast driving all through Ennis and Palmer and surrounding communities searching for bluebonnets. I can’t say we found a lot, but we had a lot of fun laughing and talking up a storm!!

It had been a LONG time since I had had my good camera out. I was afraid I wouldn’t remember how to use it, but a lot of it came back to me. It was good to use it again. Unfortunately, I have to remember how to reduce the file size before I can share any of them here with you.

Working Out

Wednesday was a day of rest, but Thursday found me back at the gym with my friend Linda. We have been trying to work out at least twice a week since the new year began. She is a little better about making the goal plus some than I am. That’s probably why she’s having a little better results than I am, too!

Nevertheless, while I guess it is not “fun,” exactly, to go to the gym, I do enjoy getting together with her. Despite being tired and sore when we leave, I do feel more energized. I can tell I am stronger. Now, if only, I would lose some weight … or at least … some belly.

Thursday afternoon, I listened to a Webinar on advocating to Congress in preparation for the Life and Breath rally in Washington, DC next week. Immediately following that, I participated in a market research call. I always like to do those, both because I make a little spending money and because it is fun to see what potential commercials will be coming out. Oddly, I liked all three commercials I was shown. I typically don’t like or can find ways to improve the ads I’m shown.

Webinar Presenter

Today, I got to have another new experience. I got to participate as a presenter in a Webinar about immunotherapy. It was a lot of fun. I had worried about my Internet service not cooperating, but today it was good. If only the guy who does our yard hadn’t shown up just about the time the Webinar started… I suspect there will be a lot of lawn mowing noises in the background when the Webinar is published.

I also tried making a video to post on WhatNext. For a first try, it wasn’t bad. I got a kick out of the fact that Espy decided that it was the perfect time for some petting, affection, and purring. Like with the yard mowing, timing is everything!

I have a few down days now, which I need. I leave for Washington, DC on Wednesday morning. I have a 6AM flight so we’ll have to be at the airport by 4 AM. It takes about an hour to get there. Maybe I won’t go to bed??? I’m sleepy just thinking about it!

I hope you’ve also had a fun and interesting week!