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.

 

Are We Wasting Time Appealing to Congress?

I write to Congress fairly often in hopes of convincing them to throw more support toward lung cancer research. But, I wonder if my time wouldn’t be better spent writing to the National Institutes of Health (NIH) and/or the Centers for Disease Control and Prevention (CDC)?

Here’s why I ask. I received a response to one of my letters from my senator, John Cornyn, that actually included some potentially valuable information. He wrote,

As you know, entities such as the National Institutes of Health and the Centers for Disease Control and Prevention are charged with allocating federal research dollars toward research and initiatives that will advance prevention and successfully treat diseases and health conditions. I believe Congress plays an important role in overseeing the distribution of these monies and must ensure they are wisely spent.¹(emphasis mine)

Should we not then be concentrating some of our efforts to advocating the CDC and the NIH to allocate more of the research dollars they receive to lung cancer? I mean, I know we need to talk to Congress about budgeting the dollars for NIH or CDC, but once there, I am not sure their researchers feel a real need to fund lung cancer.

I base my theory, in part, on a statement made by the NIH to Cure Magazine in August 2017. I was angry and incredulous when I read:

According to the National Institutes of Health, lung cancer received about $250 million in recent years in research funding annually, and it claimed 25 percent of all cancer deaths. That means that about $1,700 is spent for every person who dies each year from lung cancer. That spending rate is much higher for other forms of cancer.

Leukemia receives about $240 million a year and accounts for about 4 percent of cancer deaths. That means almost $10,000 is spent for every person who dies of leukemia. For breast cancer, that number is about $13,000.

The NIH states that funding is provided to research based on its scientific merits, not the type of cancer it targets. (emphasis mine)²

Lung cancer kills more people than the next three biggest cancer killers combined: prostate, breast, and colon. The NIH surely sees breast cancer as a worthy cause to fund. Are the researchers seeking funds that target breast cancer that much better grant writers or trial designers than those seeking money for lung cancer research? I sincerely doubt it.


If you wish to make your voice heard by the NIH, contact information for the Director  is:

Francis S. Collins, MD, PhD
BG 1 RM 118A
1 Center Dr
Bethesda, MD 20814
francis.collins@nih.gov
301-496-2433

You can contact the CDC at:

Anne Schuchat, MD, Acting Director
Centers for Disease Control and Prevention
1600 Clifton Road
Atlanta, GA 30329-4027

The National Cancer Institute’s contact information is:

  1. 1-800-4-CANCER (telephone answered weekdays from 9 AM until 9 PM ET)
  2. LiveHelp Online Chat, LiveHelp (M-F, 9AM – 9PM ET)
  3. Email

Mr. Cornyn further advised me that he does not sit on the Senate Appropriations Committee so has little jurisdiction over how the annual appropriations bill will be allocated.

So, I guess my next question is to you. Does your senator sit on the Appropriations Committee? Please click on the link and send your Senator a letter if he or she is on the committee.

 

 


¹Letter from John Cornyn to Donna Fernandez (donna@hopeandsurvive.com), dated 02/09/2018

²T Keenan. “The American Lung Association Seeks to End Stigma.”  Cure Magazine. August 11, 2017. https://www.curetoday.com/articles/the-american-lung-association-seeks-to-end-stigma. Accessed 3/4/2018

 

We Can I Can

Today is World Cancer Day. I meant to get my picture taken holding up a “We Can I Can” sign to share on LungCancer.net … but I didn’t get it done. Maybe I will get it done before today is out and will post it here…

According to the American Cancer Society, a total of 1,688,780 of us were diagnosed with cancer in 2017. Of those, 135,430 were diagnosed with colon/rectal cancer (this is largely preventable – get those colonoscopies!!!!!), 222,500 will be diagnosed with lung/bronchus cancer, 252,710 females will be diagnosed with breast cancer (it is rare, but men can also be diagnosed with breast cancer), and 161,360 men will be diagnosed with prostate cancer. (https://www.cancer.org/…/estimated-new-cases-for-the-four-m…)

“So? What does this mean to me?,” you ask.

Well, here’s the deal … We Can and I Can … or more like I Can and We Can make a difference … because I can contribute, but my contributions are small. Our family doesn’t have much money these days. I have more time than money but even time is somewhat limited. So, I can do a small part in volunteering and in contributing money … but all alone, my contribution won’t make much difference at all.

BUT, what WE CAN do together …

Sit and imagine it. Just for a minute. 30 seconds. If every single one of us reached into our pockets and pulled out a five dollar bill or $10, it truly wouldn’t hurt most of us much. Many of us would never realize it was missing from our pocket.

But, if we all took that small amount of money and contributed it to a cancer organization today, the impact would be earth-shattering.  Naturally, I hope that the contribution would go to a lung cancer organization, but everyone has their favorite cancer charity … and impacting cancer is the theme of today.

How many of you played agility today? What did a single run cost? How long did that run last? Have enough money to play a game but not enough to donate? All I can say is that I hope you never get those dreaded words from your doctor, “You have cancer.” or hear them from someone you love, “I have cancer.”

How many of you stopped by Starbucks for a coffee today? How much was that coffee? How many lattes would you have to give up to find $10 to donate?

My finances suck these days, but I can tell you that I can find $10 to donate and I won’t even actually miss it much. Maybe I will have to cook one more meal at home or eat a sandwich or something, but I can come up with $10. I suspect that 99% of my friends can, too.

A small contribution by all of us = a huge difference
A few dollars donated by each of us = millions (billions) for cancer research

So, let’s play “We Can, I Can”

  • I can donate $10. We can save thousands of lives by supporting cancer research.
  • I can write a blog. We can share the message. Let people know that they need early screening, colonoscopies, mammograms … Find that cancer early and it is almost always curable.
  • I can beg for $10. We can all ask everyone we know to contribute a small amount of money and our research organizations will be scrambling to find places to use it all!!! What a picture!!!
  • I can share a link: http://yourcancergameplan.com. We can click on it, pick a cancer charity to receive $5 (out of someone else’s pocket), and share it with our friends on Facebook and Twitter (through March 1, 2018). (Get your cancer game plan at the same time. The life you save may be your own.)
  • I can make a small difference. Together WE CAN change the face of cancer. How about that??!!

What’s holding you back? Please, write that check. Or, heck, put it on your credit card. $10. Not going to break the vast majority of us. Most of us won’t even know we’re missing it. (And, if you’re SO strapped for money, think about one little thing you can do without for one little week in order to help get researchers the money they need to help keep those of us with cancer and those yet to get cancer alive!!!)

Thanks in advance for your generosity.

(Keep in mind that just because you didn’t see this ON World Cancer Day, your $10 (or however much you can donate) will still make a BIG difference any time you send it.)

(Some of my favorite charities are American Lung Association, Bonnie J Addario Lung Cancer Foundation, Lung Cancer Research Foundation (formerly Free to Breathe), LUNGevity, Cancer Research Institute, Cancer Support Communities … There are more. These are the ones I can think of off the top of my head. Please always use CharityNavigator prior to donating. Make sure that the dollars you give are actually going toward program costs!! Too many well-known charities seem to be in business for themselves more than for the cause they are supposed to benefit.)

If I Don’t Do It, Who Will?

Just this morning, I heard about a 29-year old man who has been diagnosed with lung cancer who wants to raise awareness about the disease by having his state offer specialized “beat lung cancer” license tags. Stephen Huff is among a growing number of young adults who are being diagnosed with late-stage lung cancer. They never smoked. They were active. They were healthy. They’re young. And, yet, they are fighting the most deadly cancer there is.

It used to be that when you thought of lung cancer, your mind’s eye saw a wrinkled old man with a half-burned, long-ash cigarette hanging out of his mouth or an elderly woman holding a burning cigarette in her tobacco-stained fingers. You hear hacking and coughing and have a generally negative attitude about the whole person/disease/addiction.

The picture of what lung cancer looks and sounds like needs to change and it needs to change NOW. In today’s world, your mind would be just as accurate if it saw a virile, 20-something with a racing bib on. Or, a 40-year-old mom cheering on her son’s soccer team. Or, your next door neighbor who never smoked and was never around cigarette smoke. Or you.

Smoking is still the number one cause of lung cancer, but every year, more and more nonsmokers are being diagnosed with lung cancer. Especially for nonsmokers, the disease is usually not diagnosed until it is stage III or IV since no one, not the patient, not the doctor, suspects lung cancer as the cause of symptoms until every other possible option has been exhausted at least once.

And, as an aside, even IF the person diagnosed with cancer is or was addicted to tobacco, do they really deserve to die? In today’s world of acceptance (gays, transgenders, races, nationalities, religions, the list goes on and on), we do not, DO NOT, accept smokers. Whether conscious or not, we as a society are perfectly willing for those evil smokers to fight and die from lung cancer because somehow they deserve what they got. Individuals, companies, and government agencies all withhold their money from lung cancer research because, however wrong, they believe it is a cause that does not deserve support.

Stepping back off of that soapbox, I’ll climb onto another …

Mr. Huff, the young man recently diagnosed with stage IV nonsmall cell lung cancer, is asking his state legislators to offer lung cancer awareness license plates. The plates will cost taxpayers an additional $55. Half of those funds would be sent to his chosen charity to help pay for more research. At this point, he doesn’t think raising money will help save his own life, but he is adamant that more funding for research will save lives in the future.

I agree that it is crucial to get more funding in the hands of researchers. When I look at the tremendous progress that has been made already, despite every possible financial obstacle being thrown in the way, my mind can’t comprehend what scientists could accomplish with adequate funding. According to LUNGevity, only six percent of federal dollars devoted to cancer research goes to lung cancer research. How does this add up? The most deadly cancer gets the least amount of funding? Boy! Some stigmas die hard, do they not?

Let’s put the disparity in funding into hard, cold facts:

During his interview, Mr. Huff was asked why he was trying to get the state to issue license tags supporting lung cancer research. His response is one I hope we all will consider,

“If I don’t do it, who will?”

 

 

FIVE YEARS!!!! Yes!!!! FIVE YEARS!!!!

You guys!!! This girl just passed her FIVE YEAR cancerversary!!!

When I was diagnosed back in 2012, my first oncologist thought I might live four months. And, yet I recently celebrated FIVE years of life after diagnosis!!!

Donna, December 20, 2017

The year 2017 was an eventful one for me. After four years of immunotherapy treatments with every CT scan showing tumor stability, a tumor in my supraclavicle lymph node (on my neck, near my collarbone) outsmarted the drug and began to grow.

I had to quit my clinical trial after treatment #98. I was so looking forward to getting my centennial treatment. I wonder how many people in the world have received 100 infusions of nivolumab (aka, Opdivo)? I wanted to be among the first.

There were decisions to be made after we got that fateful CT scan back. Initially, I was going to just move into another clinical trial. But, by the time I completed all of the requirements (ie., a biopsy to see how much PDL-1 was present), someone else got the spot I was hoping to fill.

My oncologist suggested that I go on chemotherapy for a time while we waited on something better to come along. I had done chemotherapy. I wasn’t anxious to do it again. To say the least.

I pondered on the idea for several days. I cried … and I rarely cry. I started getting depressed … and I am rarely depressed. I thought, I prayed, I researched other options, including potential clinical trials available in Dallas or Houston or anywhere within driving range.

And, one day I decided radiation might be a viable option. The tumors in my lungs were still stable. Only the one tumor in my neck was growing. It seemed to me that it would be an easy thing to radiate that bugger. (I wasn’t a candidate for radiation when I was first diagnosed because of the location of my tumors in my lungs.)

I spoke to my nurse practitioner about the idea. She said if I really thought that was the route I wanted to go, she would make a referral to a radiation oncologist.

My radiation mask and a wonderful
“lung cancer”
cross my cousin sent me.

My husband and I had an immediate connection with the radiation oncologist. We liked him a lot. And, we completely trusted that he would get the job done on that errant tumor, that I had nicknamed Wayward Tumor.

I had fifteen treatments. I will be blogging about those treatments if I will ever sit down and finish them. The treatments were easy enough. I was a little surprised by the severe fatigue that came around after the treatments were complete. It has taken several months to begin to regain my energy and even so, I tire and stay tired very easily.

Nevertheless, when I had my first CT scans since the discovery of the growing tumor, we got great news! Not only was the tumor in the supraclavicle lymph node gone … yes, for the first time in five years, that baby was no more!!!! … the one tumor in my lungs that the radiologist doesn’t call a scar shrank by half. That tumor had been completely stable for over 4 years, not shrinking or growing, just being.

I have been okay with those results … I’ve often said I was completely willing to carry the tumors around with me as I live my life as long as they just sit there nicely and don’t interfere. So, I wasn’t prepared to hear that it had shrunk significantly. Wow!!! You gotta love a CT scan like that one!!!

We didn’t do anything special to celebrate my five-year cancerversary. In a lot of ways, it was just another day. But, in my mind, crossing that magical line in the sand – it seems many stats are done for one year and five-year survival rates – was special. Very special.

I am well aware that people can and do get to fight the beast again after crossing the five-year mark. The fact is, I am still in active treatment. I have been in active treatment for the entire five years that I have known I had lung cancer. But, it is still celebration-worthy to cross a milestone that has been looming in front of me all of this time.

Next milestone in sight? 10 years, of course!!!!

Lung cancer is a bitch, y’all. It just is. But, it isn’t stronger than we are. If we keep a smile on our face, a song in our heart, and let hope consume us … we beat it. Every moment we do not dwell on cancer, we beat it. I am resolved to be happy and content every day that is before me. In that way, no matter what happens, I have beaten the beast.

Merry Christmas, Y’all.