Category Archives: advocate

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

Tools That Can Help You Manage Your Disease

Fighting lung cancer is nearly a full-time job. The time is long since past that we as patients should sit back and just turn over our health to our doctors. The fact of the matter is, we are in a battle for our lives and no one, no one, cares as much as each of us does about our own survival.

Take charge of our own care

Don’t get me wrong. I am not by any means saying that our doctors and medical team don’t care. I believe they do. But, doctors are overworked. Many have so many patients that they just don’t have much time to spend with each one individually. If you go to a community cancer center, chances are very good that your doctor treats a patient with breast cancer, one with prostate cancer, then one with lung cancer, and next one with colorectal cancer….

MORE…

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!

 

Save Your Life With a Clinical Trial…I Did

Have you ever considered participating in a clinical trial? If you haven’t, you are in the majority. In fact, according to Patient Advocate Foundation,“ less than 5 percent of adults diagnosed with cancer each year will get treated through enrollment in a clinical trial.”

I find this stat extremely sad for two reasons. The first is that without participants clinical trials cannot be conducted. If treatments cannot be tested in trials, they will never be approved by the FDA, so they will not be available to cancer patients. A study by Fred Hutchinson Cancer Research Center and the University of Washington found that nearly 20 percent of publicly funded clinical trials fail due to lack of participation.

…more…

originally published 10/6/2016

The Hope that is Research

I have to begin this blog on a sad note. There have been personal and national tragedies that occurred since I agreed to write a blog about hope and optimism. I lost three friends to cancer in a week’s time … and last night, my city lost five police officers who were gunned down in cold blood while doing their job of overseeing a peaceful protest march. Sometimes, events make it hard to see joy and optimism, but it’s still there. We just have to look a little harder.

donna-roseEven though I will miss my friends badly, they each outlived their prognosis for stage IV lung cancer by years. The reason they beat the statistics and had years added to their lives after being diagnosed is because of the huge advances being made every single day in new treatment options.

…more…

originally published July 14, 2016

Don’t Give Up: Taking Control of Your Life

donna-pastureI am sitting here staring at a blank sheet of paper, wondering what I have to say to you that will be worth your time reading it. I am no scientist. With the advent of chemo brain, I don’t even really enjoy reading and researching like I once did. So I have no great wisdom to impart.

What I do have to pass along is hope. Such a little word but one that has the ability to change your life. Hope crowds out anxiety and pushes away fear. It fills you with peace and can motivate you.  ….More

 

One More Fun, Fun Opportunity Came My Way

Imagine my surprise when I got a call on Friday from the American Lung Association asking if I would be available to interview with NBC Nightly News about my journey with lung cancer and immunotherapy. Oh my goodness!!! They apologized because it was short notice … and I was thinking, “Who cares??? Thank you, thank you, thank you for the opportunity!!!”

I spoke with the person who was going to be putting the story together on Friday. There was a caveat. The spot might or might not make it. And, we wouldn’t know until Sunday night or Monday morning. And, the interview needed to take place on Monday morning!

Lucky for me, the appointment for my first-ever monthly immunotherapy infusion was set for 3 PM on Monday, the latest it has ever been scheduled. That gave me enough time to do the interview and still make it to my appointment.

I’m not a housekeeper. I wish I was, but I’m just not. I get really tired when I think about pushing around the vacuum cleaner or finding spots for all of the stuff we seem to collect. (Keep in mind, that fatigue lifts immediately if someone offers the opportunity to do something I think is fun…) So, when the call came early Monday morning that the show would go on, I had to scurry, scurry to get at least one room of the house clean enough to be on NBC Nightly News!!

While I was getting ready for the interview, I received an email from another person at NBC News. She wanted to know if I could do a phone interview with her for a piece she was writing for their Web site. Wow! Well, yes!!! I will definitely find the time for that!! It is an advocate’s dream to reach as large an audience as possible with our stories!

setting up the cameras for filming

I had barely hung up the phone when the person arrived to tape my interview for the news. My part was taped at my house, but I was interviewed by people in Washington, DC. That was interesting to do because I couldn’t see their faces so I wasn’t sure if I was answering the questions like they expected or if I had said enough or too much … I was honestly surprised at the clips they chose to use in the story because those were some where I thought I might not be responding as they would have expected.

It takes a long time to get a minute’s worth of video for something!! The guy who did the filming … I’m not sure what his title would be … arrived at 10 AM. He was still uploading footage to NBC at 1:30 PM. I had to tell him we had to leave because we hadn’t had anything to eat yet and I had to be at UTSW for an infusion by 3. It takes an hour to get there, so we were pushed for time!

I so wanted to be home in time to see the NBC Nightly News, but it was not to be. Things moved like molasses at the infusion center. It took longer for my bloodwork to be processed and then it took awhile for my Opdivo to get ready. I was still sitting in the infusion chair when the 5:30 Nightly News came on.

I’ve never done it before and might not have done it if I wasn’t the last person in the infusion center, but I asked if they would change the channel to the news so I could watch. I don’t think they believed me when I said I was going to be on it.

It started out showing me with my dogs. How appropriate!!! My dogs are a big, big part of my life. I thought it was awesome that they included them in the news piece!

One other thing before I have to run and get ready for a fun day photographing bluebonnets with a friend who in Texas from Florida – it has been so much fun hearing from people from all across the US who saw the news report and wrote to me. I have sure enjoyed getting in touch!!

So, without further adieu, here is the news article that Maggie Fox wrote. Embedded in it is a link to the news story.

https://www.nbcnews.com/health/health-news/immunotherapy-transforms-lung-cancer-biggest-cancer-killer-n866356

 

 

 

 

Making a Difference

I had the most disconcerting dreams last night or early this morning. I dreamed first that I was on some sort of gas-powered bicycle (it looked like a regular racing bike in my dream). I stopped at a gas station to buy a dollar or two of gas, which was all it took, and decided, right then and there, that I was going to begin to bicycle across America to bring attention to the sad facts about lung cancer:

  • #433aDay die from it – that’s 155,000+ per year
  • While it kills more people each year than breast+prostate+pancreas+colon cancers combined, it gets less attention, certainly less than breast and/or prostate
  • Women need to stop fearing breast cancer like they do and start looking beneath that fatty tissue to their lungs. Lung cancer kills nearly twice as many women each year as breast cancer. (Breast cancer screening is vitally important. I don’t mean to imply otherwise.)
  • The amount of federal funding relegated to finding a cure or at least new treatments to prolong the lives of those with lung cancer is far, far less than that received by other cancer based on funding per life lost.
  • Anyone … ANYONE … with lungs is susceptible to being diagnosed with lung cancer. It is not a smoker’s disease. It is a breather’s disease.

In my dream, while at the gas station, I started trying to figure out how my ride was going to work. Where would I sleep? How would I advertise the facts I wantedpeople to know? What would happen when my tires blew out? How would I carry spares and how would I fix the bike? When would I eat? Just how would this ride across America work? Where would I get my cancer treatments? I surely could not complete this jaunt in one month, between my treatments.

Bluebonnets

You have to realize how idiotic this dream is. I haven’t been on a real bicycle in 30 years or more. I am 64 years old, with stage 4 lung cancer. I have been working out a bit most every week since the first of the year, but certainly, nowhere near enough to ride a bicycle across America, not even some rigged up gas-powered bicycle.

So, in my dream, I decided I wouldn’t ride the bicycle after all. Nope. I have two good legs. I would walk. I had a big, floppy felt hat. I was good to go. But, again, the questions arose: where would I sleep? How far could I walk each day? What would happen when my shoes wore out? Am I strong enough to carry a backpack for a mile, much less thousands of miles? (The answer to that is no!)

Okay … walking and bicycling, even in my dream, really didn’t make any sense at all. But, I was still left pondering how I, as one person, can make a difference, can bring attention to this terrible disease that isn’t, but should be, an outrage and embarrassment in America?

Still, I thought, how neat it would be to take a foot-trip across this Nation, camera and notepad in tow. Every day, I would take pictures and write blogs about what I saw, how I felt. And, people passing me on the highways and byways of this great land would come to know my story … and far more importantly, the story of every lung cancer patient, past, present, and future. Finally, perhaps news channels would begin to follow my journey and suddenly maybe the public would start to be educated about this killer that’s unfairly tagged the smoker’s disease.

Maybe serious conversations would finally start to take place. Maybe.

To borrow the title of one of my favorite songs:

hope

Hope

 

I can only imagine.