Monthly Archives: April 2018

Happiness is My Normal

I was just looking at my Facebook memories. I love those! I find myself posting things I want to remember to Facebook now so that they will show up in my memories in the future. Am I the only person who does that?  More…

 

A few years ago, I wrote a number of blog posts for Patient Power. I am going to provide links to them on my blog.  Happiness is My Normal was originally posted 4/28/2016

 

 

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.

 

Lung Cancer … What????

Oh man!! Does anyone expect to get a diagnosis like lung cancer … or any kind of cancer, for that matter? I don’t really think so.

Lung cancer has been in my life for a long time. The first time I really remember hearing about it in a personal way was when my favorite great uncle was diagnosed. I remember going to visit him at the VA Hospital in Dallas all of those many years ago. I was so heartbroken. Even though I was just a kid, I had heard that people don’t live with lung cancer. He didn’t.

Next, when I was a very young adult and a new mom, my 48-year-old dad was diagnosed with lung cancer. What??? I thought lung cancer happened to the elderly.

My dad didn’t have any symptoms: no coughing or wheezing. Actually, he did have a symptom. We just didn’t know it was a symptom. His right knee had begun bothering him a month or two earlier. He had just made a long road trip from Dallas to Washington, DC so everyone, including doctors, chalked it up to that. As it turned out, his cancer had metastasized to the bone in his knee. No wonder chiropractic and other measures didn’t help ease the pain.

My dad’s doctors said he would live six months. And, that’s exactly how long he lived. He worked until three weeks before he died. Even the day he died, his office was calling with questions that he was able to answer. I gained a lot of respect for him by watching him fight his disease.

My turn

I was as active and as happy as I’d ever been in my life when it was my turn to hear those words, “You have lung cancer.” What?????? The world stops. Surely, I misunderstood, there had to be a mistake. I felt great. I had no symptoms. None. Well, except a tiny little knot that had come up just a short time before my diagnosis.

God has watched over me all of my life. It has to have been He that made me finally, after 10 years, go to the doctor in October 2012. Not because I had any known symptom of lung cancer, but because I was gaining weight that I just couldn’t diet away. I thought I had thyroid issues, something that I could easily remedy with a little pill.

We did blood tests and because my new primary care doctor felt that tiny little knot on my collarbone, I was sent for a CT scan. As they say, the rest is history.

I didn’t have thyroid issues. I still don’t know why I kept putting on weight (which unfortunately continued even after my diagnosis). But, as much as I hate the added weight I lug around, I owe my life to it. I would never have gone to the doctor had it not been for thinking I needed prescription pills to get rid of it.

Yeah. No thyroid issues. Something worse. Far worse. Lung cancer.

4 Months

My first oncologist thought that my lung cancer was so advanced that I would only live another four months. I sometimes question why he thought that because when I was diagnosed, the cancer was in both lungs and in my lymph node on my collarbone, but thankfully it hadn’t invaded any organs, my brain or my bones. Praise God, l still don’t have cancer anywhere except in my lungs (we radiated away the lymph node tumor).

Stunned though we were, my husband and I decided from the very first day that we were going to continue living our lives as normally as possible for as long as possible. We were going to tell our family that, while yes, I had been diagnosed with lung cancer, it was going to be okay.

We didn’t know that we were telling the truth!

It is now April 2018. And, it is still okay!! So far, I’ve beat my initial prognosis by over five years.

Why Me?

You know, I have lost so many friends to this awful disease. They were mostly younger and smarter. They were mostly never-smokers. And I always have to ask, “Why them and not me?”

I really do wish I knew the answer to that question. But I don’t and never will (unless God tells me when I get to Heaven). So, I try to live my life as well and as completely as I possibly can. Every single day. I try to constantly look on the bright side of life because I have been given a gift denied to many – life itself. And, I try to always, always, always tell people – anyone who will listen –

It only takes lungs to get lung cancer.

Don’t ignore any symptoms and don’t let your doctor ignore them either just because you are young and/or never smoked.

If you are ever unfortunate enough to get a lung cancer diagnosis, ask your oncologist right away to do testing for genetic mutations.

Don’t give up Hope!!