Tag Archives: #433aDay

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?”

 

 

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?

Live Today

This morning I got up to the news that a 30-year-old, larger-than-life man passed away from his lung cancer. Thirty years old.

Unfortunately, I missed the opportunity of knowing him or his bride of four months. But, I’ve been reading his story on Facebook and looking at the pictures that have been posted of his smiling face, even in the face of a horrible disease ravaging his body. He loved life. He embraced life. And, now, he leaves behind a trail of mourning.

I am so saddened. Another young person lost to lung cancer. How many more will be lost before we realize that …

  1. lung cancer happens to people with lungs
  2. lung cancer is an epidemic far worse than any opioid epidemic is. Hello? Did you know that 433 people die each DAY from lung cancer? Four HUNDRED thirty-three A DAY.
  3. and, as evidenced by the death of John Cherol, it happens to young people, not just old ones. More and more and more, it is a young man or woman whose life is cut short by this insidious disease. Not smokers. Not your granny. No. Someone who has their whole life ahead of them.

And, when I went on Facebook just now to be sure I had John’s name right, I was dumbfounded to see that my friend Jennie Baumann, only 44 years old, has also passed away. One of the 433 a day. My heart is broken. Three girls, left without their mom.

Why does lung cancer happen to such nice people? To people with so much to give? With so many who love them? People who are so full of life and who have so much life ahead of them?

When is it going to stop? Where is the outrage?

The purpose of this post was going to be to live today. Tomorrow isn’t promised. That’s still true.

Today. Live today. Tomorrow is not promised.

But, really … it is going to be transformed into a post that asks, that demands to know …

WHERE IS THE OUTRAGE? WHERE?

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.