Category Archives: attitude

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.

 

I just wonder …

Do you ever start to write something and when you finish the piece … it has wandered to places you never imagined? That seems to happen to me all of the time.

I started a post this morning that was talking about the dearth of funding for lung cancer. I quoted the dire statistics associated with a lung cancer diagnosis.

While doing some research for the article, I listened to some videos that discussed the progress being made in lung cancer research. And, then I found an article by Dr. Gilliland, President and Director of the esteemed Fred Hutchinson Cancer Research Center in Seattle, WA.  Suddenly, I was filled with optimism!

My article ended completely different than it started. It started out somewhat hopeless and ended with the following quote from Dr. Gilliland,

I’ve gone on record to say that by 2025, cancer researchers will have developed curative therapeutic approaches for most if not all cancers.

So, now I am sitting amazed at the remarkable progress that our scientists and researchers are making toward finding a way to make even the direst diagnosis more palatable.

Can you even imagine a world … in just 7 short years … where a cancer diagnosis doesn’t equate to a death sentence?

Mind boggling! And so encouraging!!

The Stigma that Just Won’t End

On one of my favorite non-lung-cancer-related forums, a LungCancer.net blog was referenced, Lung Cancer Stigma – What Can We Do About It? where Lora Rhodes, the author of the blog post, begins by defining what a stigma is. She writes that it is “a feeling imparted by others that one’s disease was self-inflicted…” and “Lung cancer stigma can result in feelings of fear, guilt, and blame.”

Lora discusses an interesting movement called the Lung Cancer Project whose goal is “to identify, understand, and remove stigma and other barriers faced by people with lung cancer.” If you have never checked out the Lung Cancer Project, take a look at it. One of the project’s studies surveyed more than 3,000 people to understand the social psychology of lung cancer relative to breast cancer. The study confirmed what those of us with lung cancer already know: people have a significantly negative bias and associate blame and hopelessness with lung cancer compared to breast cancer.

Lora’s blog post goes on to dispute common myths associated with lung cancer. For instance, many people diagnosed with lung cancer have never smoked or quit long ago. Furthermore, the majority of those who do smoke wish they could quit, but nicotine is as addictive as heroin, cocaine, or alcohol.

But, the point of this post is not to reiterate all that Lora said. You can (and should) read her post. And, take the Lung Cancer Project’s Implicit Association Test (IAT) if you want to see what your own biases are. But, the point of this post is the responses that came from the cancer community to a post about lung cancer stigma.

The first thing I noticed about the replies to the blog post were people with other cancers adamantly stating that their cancer also had a stigma. One explained that esophageal cancer could be associated with the abuse of alcohol and another said that colon cancer was sometimes blamed on a poor diet or lack of exercise. These statements may be true, but I have never heard anyone ask someone with colon cancer, “Oh, did you eat an unhealthy diet and cause your own cancer? Well, then, suffer. You should have known better.”

It was so odd. It was like they wanted their cancer to be stigmatized. Why????

Lung cancer stigma is so strong that it kills people. Indeed, over 160,000 people are expected to lose their lives to lung cancer this year or #433ADay as many in the lung cancer community are tagging awareness posts these days.

How is the stigma responsible for those deaths? Well, it probably can’t be blamed on all of them, but it sure can be blamed on many of them. How’s that? The lack of funds allocated to lung cancer research as compared to other cancers. We can’t find cures or early detection methods or much of anything else without funding. And, lung cancer is definitely the cancer stepchild when it comes to getting any money.

What really saddened me … but also made me mad … were some of the comments left by people who read the post, people who themselves have cancer. For me, they proved how deep (and scary) the stigma really is:

My mother died of lung cancer and was a two pack a day smoker. My siblings and I and all her grandchildren begged her to stop. She did finally stop at age 70 and was diagnosed at 73. Her first words after diagnosis was XXX why did I give up cigarettes. I don’t know if her children or grandchildren will ever forgive her for slow suicide. (emphasis mine)

Here’s another:

When I was a teenager my dad, who had smoked for a long as I could remember and had diabetes, would get up every morning and cough so hard that it sounded like he’d cough a lung up. I went to him and asked him to quit. He just laughed. I told him it would be easier on us 4 kids if he’d just shoot himself. (emphasis mine)

No one … no one … deserves cancer. No one deserves lung cancer. And no one deserves to be ostracized because of their cancer.

Read what Dr. Jyoti Patel wrote, back in 2014:

For years I have cared for patients with lung cancer who suffered from the stigma surrounding the disease. I have watched patients courageously fight, endure treatment toxicity, and come to terms with the fact that their disease would ultimately be fatal all on their own, primarily because of the shame that they felt. They, and many others, felt the disease was somehow self-inflicted. They felt guilty for putting their loved ones through such a difficult journey, one they felt they had brought upon themselves. It’s hard for me to believe that anyone could feel that such a deadly disease was somehow deserved.

Family members, friends, acquaintances, and yes, even the patients themselves who were or are smokers, feel that they got what they deserved. How in the world do we change this stigma? It isn’t getting any better over time. No matter how much we talk about it, the stigma runs deep.

How’s It Feel to Have Cancer?

A breast cancer oncologist wrote an article about how it feels to have cancer after she herself was diagnosed. She describes it like this:

Cancer turns life into a roller coaster of hope and despair. Like an intruder lurking in your closet, you never quite feel safe. It was difficult to be out of control, at the mercy of the kindness and skills of medical professionals.

Her article is a good one. You can read it here: http://time.com/4949983/breast-cancer-diagnosis/

How do you describe cancer?