Tag Archives: #LCSM

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

Looking at the Positives of Having Lung Cancer – Am I Crazy?

Okay, this post is probably going to have a lot of people looking at me and thinking I have gone stark-raving crazy. But, here goes anyway!

What would life without cancer be like?

I participate in a forum whose participants have all kinds of different cancers. Today, a post was made that asked, “Do you get wrapped up in thinking about what might have been if cancer hadn’t come?” The person who asked the question is livid that she has cancer.

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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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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.

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

 

 

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

 

Who or What Inspires You?

I just finished watching the movie, Gleason. It is the story of Steve Gleason, a former New Orleans Saints professional football player and current ALS survivor. Steve was diagnosed with ALS when he was only 34 years old. ALS, aka amyotrophic lateral sclerosis or Lou Gehrig’s   disease, affects the function of nerves and muscles, ultimately rendering those with the disease unable to move or speak, though their minds remain strong.

Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. About 6,000 people are diagnosed with the devastating neurological disease each year. The life expectancy for those with ALS is three to five years, though 20% live at least five years and ten percent will live more than ten years. Live, as many cancer patients also know, is a relative term.

The movie chronicles the journey Steve, his wife Michel, and son Rivers have traveled, mostly since Steve’s diagnosis. It is, without a doubt, inspirational. And frustrating. And maddening. And, incredibly sad. If you watch it, and I encourage you to do so, be sure to have a box of tissue nearby. I can’t imagine that you won’t need them.

Everyone handles adversity in their own way. Steve and Michel resolved to meet the disease headlong, especially after Michel learned she was pregnant with their first child just a short while after learning Steve was entering the battle, quite literally, for his life.

Steve has the money and the fame to do a lot more than a lot of us can do. And, to his credit, he is using both to bring great awareness to the disease that has robbed him of his vitality, but not of his spirit. There is even a law, the Steve Gleason Act, that ensures that Medicare or Medicaid will pay for speech generating devices so that ALS sufferers can continue to communicate even after the disease robs them of their ability to speak.

I am not an expert, to say the least, on the ALS disease. I’ve feared it since I saw a movie many years ago about the battle baseball great Lou Gehrig fought against it. It, like cancer, is not for sissies. That’s for sure. It is a mean, mean, mean disease.

What Inspires Me?

As soon as I finished watching the movie I felt compelled to come fire up the computer and write. I have to write while the ideas are fresh in my  mind or they leave me, often forever. Even when I am touched as deeply as I have been by the Gleason film and the life of Steve Gleason, my mind doesn’t always hang onto thoughts for very long. Chemo brain, anyone?

Steve Gleason inspires me. This man has allowed a film crew to follow him through some of the most embarrassing and harrowing times a person could endure. The purpose of the film is to leave a documentary behind for his son, but it also serves to bring great awareness about the disease and the needs of patients and for research. Steve knows that he likely will not live long enough for his son to really remember him in the flesh. The video journals will let Rivers know his daddy, hear his advice, and know his love, even if Steve is no longer physically here.

And, something else the film does is show just how indomitable the human spirit can be. Steve and his wife Michel, who is as heroic and inspirational as her husband, decided when he was diagnosed that he wasn’t going to die before the disease actually robs him of life. What this man has endured to keep living leaves me without words (and we all know I am rarely speechless). And, to the absolute extent possible, he is living.

Steve isn’t simply alive, he is living. He can’t walk. He can’t speak. But, the movie shows him pulling his young son on a sled across a field with his wheelchair. Making important memories. Enjoying life, despite circumstances.

Attitude

Since I have been diagnosed with lung cancer, I have met many others with a similar diagnosis. The majority of us were diagnosed with late stage cancer. I think most of my friends who have lung cancer never smoked. And, nearly all of the ones I feel closest to have not been stymied by their diagnosis.

Like Steve Gleason, they decided that lung cancer is not going to rob them of life any earlier than absolutely necessary. Most of them aren’t famous nor wealthy, but all are doing what they can to bring awareness to their disease.  And, they wake up each day with a passion for life, an appreciation for the fact that another day has been granted to them.

I am so fortunate that I have never felt angry about my diagnosis. I don’t know why. I am not a worrier. I don’t know if that is because of my deep faith and complete assurance that when I leave this earth, I will go somewhere better. I just know that, from the beginning, my husband and I decided that the disease will be something we deal with while we are living life.

None of us knows when we will take our final breath. I could walk outside today and be hit by a car or I could suffer a fatal heart attack. Just because I have lung cancer doesn’t mean that I will die from my disease in the next year or two or ten.

What my cancer has done for me is give me a new appreciation for life because it reminds me in a real way that life is terminal. None of us will leave here alive, right?

So, it is up to me, today and every day, to look at this day as a blessing, a gift. I can’t undo anything from the past. And, I don’t know that I will be here tomorrow. But, I know I am here right now. And, it is my job to appreciate that fact. Smile. Look around myself and enjoy the sunshine, the day, my family, friends, and pets.

What about you? Who or what inspires you?

Vent #1 – Authors Fabricating Information to Support Premises

I have a few vents, actually. One has to do with the stigma associated with lung cancer. And, I am going to address that one real soon. The stigma is killing people. Lots of people. It is frustrating, maddening, an outrage, and yes, again, deadly.

But, I have a vent for today that is fresh on my mind that I want to talk about. This one may affect people who have had lung cancer for a while and who have been quoted a bit all over the Web and in magazines, etc. Because it may have happened to you, too.

Today, I went in search of an article where I had been featured. In the search box, I typed my name and lung cancer.

That search brought up legitimate sources … and then it showed my name as being included in a book. This book was co-written by a Yale-educated MD (who also has an MBA from Wharton Business School) and a Ph.D. who has reported award-winning health and science segments for Dateline, Today Show and 48 Hours.

First of all, the authors never contacted me for permission to include my information in their book. Perhaps, since I put myself out there on the Web like I do, that is no problem. The problem is that they published completely false information to support their premise.

What was true in the book:

  1. My name
  2. My date of diagnosis
  3. A quote

What was false in the book:

  1. My diagnosis (supposedly adenocarcinoma (true) with BRAF mutation (false))
  2. My treatment (nivolumab (true) combined with chemotherapy (false) – in fact, they were not even trialing chemo plus nivolumab when I began my trial, I don’t think)
  3. The results of this treatment (tumors spread all over my body shrank (false); my tumors remained stable for 4.5 years while I was in the trial testing nivolumab. They did not shrink, they did not grow. They stayed stable. Furthermore, I don’t have tumors all over my body. I had tumors in both lungs and in lymph nodes in my neck. I don’t consider that all over my body and I doubt you do either.)

I am outraged. Absolutely furious. These people who wrote this book apparently have a lot of clout. And, yet, in at least this instance, they are using false information to support their premises.

Now, I don’t know about you, but I don’t deal lightly with liars. Furthermore, when a person is caught in a very obvious, blatant lie, I tend to question every other word out of their mouths (or off of their pen on paper). Without fact-checking every single word in one of the many books published by this duo or in anything they would say in conferences, I would have to believe none of it.

And, here’s the saddest part of all. I have surpassed five years of survival with Stage IV lung cancer. I have lived the majority of that time to the absolute fullest. I have done very well on nivolumab. I have had over 100 infusions of the drug – how many others can say that I wonder?

Maybe I am biased since it is me we are talking about, but I think I have a pretty remarkable story without fabricating new facts. I would not mind being featured in a book without first being contacted IF … IF … IF … the book told the truth.

What’s next?

I see my oncologist on Monday. I already sent him a copy of what was written. I will be very interested to hear his take on it all. My first inclination is to find an attorney who might be willing to sue this duo on contingency. My goal isn’t money. My goal is to shed light on the fact that false information is being published to support premises. That’s dangerous.