Tag Archives: LUNGevity

The Fraternity No One Wants to Join

Last week, I attended a regional HOPE Summit that was put on by the LUNGevity Foundation. My (nearly) 86-year-old mom attended with me. After spending a full day of learning and camaraderie with all of us lung cancer survivors and caregivers, Mom made a comment that resonated with me. She said, “It’s almost like you are all in a fraternity or a sorority.”

Yes. That is so true. We share a commonality that no one wanted and no one asked for and certainly no one sought. And, yet, that monster no one wanted, lung cancer, has brought us together in a way nothing else ever could. And, I think without exception, we are all thrilled to know one another.

Have you thought of that benefit? Do you go places where you meet others with a similar diagnosis?

In so many ways, it takes another person who has been diagnosed with cancer to understand what it is like. People can imagine or think they know, but only someone who has heard those awful words actually, truly know.

I think meeting other people who are surviving cancer helps bring hope to all of us. Maybe it gives just the push someone needs to climb out of depression and to give life another chance. For sure, it means that we can exchange war stories and know that the person hearing them knows just exactly what we are saying, even if our chemo brains make us forget the right words sometimes.

Living Life

Once we hear those words, “You have cancer,” we all seem to react differently. I personally took on living with a vengeance. People laugh when they see my calendar. I keep it full. If there is an open day, I generally come up with something to fill it up. I want to enjoy every single minute of every single day. And, for the most part, I am hugely successful in that endeavor. If I am not laughing and smiling and having fun, I just might be asleep!

I have many friends who accepted the challenge of cancer and vowed to give it a run for its money!! They are strong warriors and usually spend a lot of time advocating on behalf of themselves and everyone else who has been diagnosed with cancer. They are using the time they have to make a difference in their lives, in the lives of other cancer patients, in the lives of everyone who comes into contact with them.

Thank God for these people! I think a lot of us want to give back when our lives have been extended beyond expectations. I wasn’t supposed to live more than 4 months. Wow! I have a story of hope to tell and tell it I will!

Or not…

I know other people who learn they have cancer and it seems like a dark cloud descends on them. They lose their energy and their zest for life. It appears that all they think about is their cancer. Sometimes, these are people who are diagnosed with early stage and treatable cancer. Long after their cancer has been obliterated, they are still giving it power over them. They moan, groan and complain because cancer came into their lives. They feel sorry for themselves and shorten their lives by worrying constantly about the fact that they had cancer … and that it might come back someday.

I always wonder, why? Why give cancer so much power? I get it if you are so sick from chemo and/or radiation or surgery that you can’t continue living life. I’ve been there. I lost days of my life when I was getting chemo. I could do nothing besides curl up on the bed, completely miserable and wondering if I really wanted to continue. But, those days would pass in a bit and once more, life was worth living … and live it I did!

My own personal perspective is that people who give up the will to live life, who concentrate more on what their new normal means (and what they can no longer do) than on trying to make the best of the time they have, are losing to cancer long before it robs them of life.

Here’s the deal. When we dwell on something, it grows bigger and bigger and bigger. It takes on a life of its own. It can begin to consume you. If you’re dwelling on living life, then joy and passion are what consume you. But if you concentrate on what you lost, no matter how small or significant that might be, you give up your peace and trade it for worry, fear, sadness, and/or anger … or maybe all of those.

Blessings

So, I choose to keep my focus on the blessings of cancer. Yes, the blessings of cancer. I joined a fraternity no one wants to be a part of … but now that I am a member, I am not so sure I would ever want to leave again. What??? Am I crazy????

Well … maybe. But, here are some of the things that have happened to me as a direct result of having stage IV (yep, terminal) lung cancer:

 

  1. As I noted already, I have made friends that I would have never met if it were not for the fact that I have lung cancer. I wouldn’t trade knowing them, not even if it meant I could somehow give away my cancer diagnosis.
  2. I am much stronger than I realized I was. It took cancer to teach me just how much strength I have. Some disease is not going to overpower my thoughts, even if it does try to overpower my body.
  3. I have so much more joy than before I was diagnosed with cancer. I guess when I came face to face with the reality that my life could be over in a matter of months, I began to appreciate what’s really important in life. People, moments, memories, time. God’s handiwork. Every single day, every single hour of every single day, I am thankful for the fact that I am alive and enjoying what God has given me.
  4. One thing cancer has done is rob me of patience. I have no patience with complainers or with people who can’t look past their circumstances to find happiness. I remove myself from their midst and that has helped make my life much happier!
  5. Not only have I made friends with others who share a cancer diagnosis, I learned who my true friends really are: the ones who didn’t just keep on living life without giving me a second thought, but the ones who I know would be there for me the moment I needed them to be. Sadly, for me and for most people who are diagnosed with cancer, I learned that many of the people I thought were good friends really are not. But, the flip side is that I learned who my real friends are. And, that’s a very important lesson.
  6. I learned how to enjoy life. I never was much of a worrier. I sure am not now. Worry is a time thief. I have no time to share with worry.
  7. Chemo brain has even lent a benefit. Thoughts don’t get a very tight handle in my brain. Sometimes, even most of the time, that can be frustrating. But only momentarily. I don’t hold onto hurts or wrongs … I don’t just forgive them, I FORGET them. Totally. So, they don’t interfere with my pursuit of happiness ūüôā ¬†I don’t try to forget them, they just don’t stick in my mind!

Challenge

My challenge to anyone who reads this is for you to begin living life like you might not still be here tomorrow. Because, the truth is, you might not be. A cancer diagnosis brings that fact to the forefront of your mind. But, NONE of us is promised tomorrow (or even the next minute). We need to start living like today might be our last day here.
What would be important to you if that was the case? Would you still be mad that someone cut you off in the grocery store line or on the highway? Would which new dress to buy be foremost on your mind or perhaps spending time with loved ones would supersede.
Just think about it. Most of what frustrates us or makes us mad is really small in the grand scheme of this thing we call life. We’re giving up blessings every single time we let something rob us of our happiness. Right? Or do you disagree?

A Week in My Life

A Little History

Since I began the clinical trial for Opdivo back in July 2013, my life was returned to me. While I was on chemo, there were quite a few days when I wondered if the fight against lung cancer was really worth it.

Chemo made me so violently ill that I can remember being curled up on the bed with my Sheltie Barney wondering how in the world I could endure an existence that put me in such misery, time after time. I began to think that if this is what life is going to be like, let me off of this train sooner rather than later.

With chemo, I would feel good for a day or so after treatment (thank you, steroids!), but then the nausea and vomiting and fatigue would set in. For two or three days, I could get out of bed or off of the couch only to go throw up. I couldn’t eat or drink. It took every ounce of willpower and strength to walk 10 feet into the kitchen.

I couldn’t live. I could only exist … and it wasn’t a pleasant existence.

Fortunately, those horrid days lasted for less than a week. By the second week after a chemo infusion, I was feeling much better. I could eat and drink again. I could make myself live a somewhat normal life. By week three, just in time to go back for another infusion and begin the process all over again, I felt pretty good.

For the first infusions, I was able to keep my spirits high. I could look at the bright side and focus on what I could do, rather than on what I couldn’t. But, the longer the process went on, the harder it was becoming not to get depressed during that third week. I was knowingly getting ready to submit again to a treatment that was going to totally knock the wind out of my sails. Is that insanity, I wondered? Everyone knows Stage IV lung cancer patients don’t live long, I thought, so why was I making myself so miserable for at least a third of the time I had left on this earth?

Chemo treatments went on for about six or seven months. Finally, my doctor said we would take a break from treatments. He hoped the tumors would remain stable, but they didn’t. The minute we stopped treatments, they started growing. All of the headway we had made with the chemo was lost.

That’s when my doctor asked me if I wanted to begin a new regimen of chemo or start a clinical trial. The chemo was expected to be less effective while making me sicker. Ugh. No thanks. Clinical trial, here I come!

I didn’t expect the clinical trial to do anything for me. I expected to be a test subject so that decisions could be made for future cancer fighters.

I could not have been more wrong! From the moment I started the trial, I started feeling better. And my tumors were stopped in their tracks. And, now, 2-1/2 years later, my tumors are still stable and I still feel great!

So, I thought some of those reading this blog might get a little bit of hope from reading about my week last week. I think you will agree that it does not sound like a week in the life of a typical stage IV lung cancer survivor. The good and surprising news is that many other Stage IV lung cancer thrivers DO have similar weeks! Guys, there is HOPE … and lots of it!!

Fun, Fun, and more Fun!

It has taken me awhile to get this blog written. The reason? I’ve been too busy to sit down and write it! Don’t you think that’s a good thing?

The week I sat down to write about started with a Run As One agility trial. In order to have a trial, the barn has to be readied. Linda Lelak and I both start trial weekend on Friday afternoons, helping with set-up. It requires the lugging of equipment from place to place. By the time these pictures were taken, we were nearly finished emptying the stall where everything was stored and carrying it out to the barn.

 

 

 

 

Since the dogs came to the trial on separate days, we took the opportunity for a photo shoot on Friday after we got things set up!

 

Saturday and Sunday – 4 days compressed into 2

Cotton got to play on Saturday; Barney on Sunday. They both had a lot of fun! Barney finally earned his last Open Touch N Go title, so he’ll start in Elite at the next trial. We’ve been chasing that title for about two years so I was really excited when we had a clean run!

 

Here is Barney’s Touch N Go run. He had a good day. He was oh-so-slightly too slow (he missed making time by less than half a second) in Tunnelers to earn a qualifying score, but he qualified in Touch N Go and in his Regular run.

Cotton wasn’t quite as successful! She DID succeed in having a great time, though. And, in all honesty, that’s what it is all about. Just to be fair, here’s one of her runs. You can see that she runs very happy!

But, this is not so much about agility as it is a chronicle of my week. So, let’s move on.

Saturday, November 14th, was a busy date. As I mentioned, I ran Cotton in agility during the day. For the evening, there were three possibilities for activities.

First, American Cancer Society wanted me to speak at a semi-formal fundraising event they were hosting. I frantically looked for a way to get a cocktail outfit without spending a lot of money. I run dogs in barns; I rarely attend events where fancy clothes are necessary. My friends really came through with offers for help. It was heartwarming.

About the time I figured out what I was going to wear, I got an email saying that the event had to be canceled due to lack of ticket sales. I was sad on the one hand … and breathed a sigh of relief on the other. I hated that the event was so poorly supported that it had to be canceled.

I had barely relaxed from having that event canceled when I got a note from my doctor’s office wanting to know if I could attend a Dallas Stars hockey game on Saturday night. I was excited to get the offer to participate with Chris Draft’s Team Draft Foundation, mainly because a good friend and fellow lung cancer survivor was going to be there.

Now, there is another outfit dilemma. I have no Stars jersey to wear. And, once again, I don’t want to spend $50 to $100 (or more) getting one!

Just about the time we decided we would just bite the bullet and get something, I got yet another email saying the event was canceled for Saturday night and would be rescheduled. Ahhh, Saturday night is going to be a night of relaxation after all.

Oh wait! Here comes an invitation to a good agility friend’s birthday party – chips and salsa and nachos … This event did not get canceled! It was a lot of fun to see everyone. I am the only one of that particular crowd who runs NADAC agility. The others run in AKC and/or USDAA, two venues I eschewed after my cancer diagnosis, so it is like a reunion when we get together for a meal.

I came home from the party and did a quick load of laundry (quick = about 2 hours) and crashed so that I could get up before daylight on Sunday.

While I ran four runs on Saturday with Cotton, I only ran three with Barney on Sunday. I knew that I had another obligation to meet on Sunday night and I was afraid there wasn’t time for more runs.

On Sunday night, I had to be in Dallas by 5 PM for a Free to Breathe meeting. This is a foundation that was started by Dr. Joan Schiller, currently the head of oncology at UTSW, and a lung cancer expert. Like LUNGevity, they host a 5K walk to raise money for research.

They also do other events. I had previously worked at one of their tables at a Dallas Stars game doing lung cancer awareness. I’ve tried to determine the major differences between LUNGevity and Free to Breathe. From my own perspective, they both do great work raising funds for research. LUNGevity is also focused very much on lung cancer survivors. They are all about offering HOPE to those of us fighting the disease. They do a wonderful job of it.

Sherry and I have HOPE … and lots of it!

Free to Breathe, I have decided, has a primary focus, besides raising funds for research, of increasing awareness about lung cancer. You will find them at health fairs and other events.

I’m happy to be involved with both organizations because I believe offering survivors and thrivers (a term I learned from Free to Breathe and that I absolutely love) hope and information is incredibly important. Lots of us are living still. Our prognosis is not as dark as it was. This is vitally important information for people with lung cancer. Don’t give up. Never give up.

But, I believe it is equally as important to get the word out to the masses that lung cancer attacks more people than any other cancer besides breast. It kills more than breast, prostate, and colon cancers combined. There are two reasons why I believe lung cancer is so deadly:
1. people believe it is a smokers’ only disease, which couldn’t be further from the truth and 2. it is usually without symptoms until it has advanced to stage 3 or 4.

I had a lot of fun meeting everyone at the Free to Breathe event. I hope I will have a lot of opportunities to work with them … as well as with LUNGevity.

Monday

I kept thinking that cramming four days into two over the weekend would not be a problem because I would just rest while I was at chemo. Chemo day (a misnomer, really, because I don’t get chemo, I get immunotherapy … but both require an infusion and it is just easier to call it chemo day!) is usually a long day. It begins with a blood draw. Then, I wait an hour or so while the blood is read. Then, I have a visit with my favorite oncologist in the world. He orders the immunotherapy. It takes an hour or so for the pharmacy to get the life-saving concoction put together. Then, the infusion begins. The drip only takes an hour. Still, even if everything is running like clockwork, which it doesn’t always, I am there for a minimum of 3.5 hours. Usually, it is more like four or five hours.

I love most everyone at UTSW so the time goes pretty fast. Nevertheless, it is a long day. I do not usually rest. Monday was no exception!

Tuesday

I actually had nothing to do on Tuesday. I usually have agility practice, but instead, we had rain. As much as I love my agility lessons, I was happy to have a day off. I did very little besides rest.

Wednesday

On Wednesday, I met a couple of friends for a movie and a late lunch. I never went to the movies until I met Anna. Now, I go at least once a month and often two or three times a month! It is a nice way to lose yourself in a world that doesn’t usually include cancer.

Thursday

Thursday was an exciting day! I say frequently that having cancer has opened many doors for me that would have never opened otherwise. I can’t exactly be happy that I have cancer, but I can tell you that I am enjoying my life. A lot.

So, Thursday is usually an agility training day so it is always a day I enjoy. But, this Thursday, was something different. Robert and I went back to UTSW, this time to do an interview with WFAA, Channel 8 news.

It just so happened that the interview took place on the day of the Great American Smokeout. So, instead of being on the news once, I should end up being featured twice.

http://www.wfaa.com/story/news/health/2015/11/20/great-american-smokeout-help-smokers-quit/76130726/

Advertising UTSW’s new initiative

 

Waiting on the reporter to arrive

 

Dr Gerber explaining what my CT scans mean

It is with mixed emotions that I was part of the feature above. I surely want people to know that they can and should quit smoking. But, I don’t want anyone to get the mistaken idea that only smokers get lung cancer. Because nothing is further from the truth and way too many people die because they think they are immune.

It only takes lungs to get lung cancer. That’s it.

We are anticipating that another segment will be aired on November 30, during the 4 PM news. I guess I will probably not see it live as I will be having chemo again. It would be highly unusual for me to make it home by 4, especially on a Monday after a long Thanksgiving holiday. Thank goodness for DVRs!

I had so much fun doing the interview. I love my doctor. I love the nurses and aides. It was especially fun that some of them got to be on TV, too! Sonia, the health reporter, was so nice. I felt like we were old friends! And, finally, I had an interview where my mouth didn’t get dry and I didn’t experience a moment of nervousness. Yes!!!!

RW and Kim had come in from New Mexico on Wednesday. They came over to watch the news story with us. Mom came too. Afterwards, Mom took us out to the Goldmine for dinner. It was a really fun day.

Friday

On Friday, Linda and I had agility class. We always have so much fun. Both Barney and Louie did an excellent job getting great distance and following our directions. I love to trial, but I love class even more.

After class, RW and Kim came over to help me clean house a bit before we went after Jimmy and Jonah. The kids are spending a little over a week with their dad … and were they excited!!!

Grandma … not the camera AGAIN!!

It is always great fun to have the kids, but it does turn our quiet existence a bit topsy-turvy! The boys have a lot of energy!! And, especially when they first arrive, a lot to say!

Saturday

On Saturday, we had a great time. Linda, Mom, and I were signed up to work a Lung Cancer Awareness table for Free to Breathe at a Stars ice skating rink in Plano. Genentech was sponsoring a Free Skate for kids and adults as part of the awareness event. So, we all loaded up and headed to the Dr. Pepper StarCenter in Plano.

 

 

 

Neither the kids nor the dad had ever been ice-skating before. They did really well. By the end of the Free Skate, Jonah was skating on his own. Jimmy took off on his own from the start.

We all had a wonderful time. At the Awareness table, we got lots of interest and gave away many blue (LUNGevity) and white (Free to Breathe) bracelets. A few people took more information.

 

 

Sunday

On Sunday, I totally forgot that I am no longer young and did something I haven’t done in years. I got up at 1:30 AM to get ready to go to a dog agility trial in Oklahoma with Ed and Linda and five dogs (three border collies, a Sheltie, and a Pom/Eskie). I picked Linda up at 2:15 and we headed to Ed’s. Because there wasn’t much traffic, we arrived in record time! The house was dark and quiet!

Linda and I, like teenagers, were outside with the dogs, trying to be quiet, but also having fun. She shined the flashlight into the porta-potty so I could see and then we used the flashlight to take the dogs through weave poles. This, my friends, is what they call “agility addicts.”

We were on the road to Norman, OK by 3:30. We laughed and talked, talked and laughed … and had a great time! This trial was done “beta” style, which means you run the same course twice. While we had a great time, Barney and I didn’t manage to have a qualifying score. I had a few chemo brain moments (I get to blame things on chemo brain … it could also have been called “senior moment”) during our runs that cost us. Barney, on the other hand, had some pretty runs!

This run was Regular 1. Barney had a beautiful run. If only his Mom hadn’t forgotten a jump, it would have been one of the nicest runs we’ve had. Where was my head??? On the second time through the exact same course, I managed to include the jump, but Barney thought I really wanted him to do the dogwalk instead of the tunnel at the discrimination. We argued about it for a bit…

What a fun, fun day. We arrived back to Ed’s by 5 or so.

Sum it Up

So … while this week may have been a bit more active and filled with more unusual activities than normal, I managed to do it all. And, keep in mind, chemo (immunotherapy) was part of the week. Had I still been getting chemotherapy, most of the activities described here would have had to be put on hold. But, with immunotherapy, and the way I personally react to it, I had a very, very full week.

Here’s what I want to leave you with. Getting a stage IV lung cancer diagnosis can be devastating. But, it isn’t the end of the world. There is HOPE. There is more and more hope every single day as researchers find more and better ways to treat our cancer.

Don’t give up. Never give up.

 

 

Wow!! Washington, DC … Here I Come!

Lately, my life has taken some strange twists and turns. And, in the process, I have gained memories that will last a lifetime.

I am certain I should not say that I am happy I have Stage IV lung cancer. And, the reality is, that I would give up all of the experiences I am about to tell you about NOT to have lung cancer. But, as long as I do … what a ride it has been!!!!

The Beginning

About a year ago, I decided to participate in the Breathe Deep DFW 2014 walk in Arlington, TX. It was an event sponsored by LUNGevity … I had never heard of LUNGevity and I had never before participated in an event similar to this one. But, I made myself go, despite the fact that I didn’t know a soul who was going to be there and had no one to go with me.

 

 

 

I got there early. I walked around and took some pictures … and generally felt a little ill at ease. I am not a person that goes to events like this all by myself. Why I did on this November morning, I will never know. God was directing me. That’s the only possible explanation.

While I was at the event, I met some awesome people. One was Katie Brown, who was responsible for the entire event. She is also a VP with LUNGevity. It was through Katie that I learned about a Regional HOPE Summit that would soon be held in Irving and a National HOPE Summit that would be held in Washington, DC.

The summits bring together lung cancer survivors. They have food, speakers, food, and fun. As the names state – the summits are all about HOPE. Because, as deadly as lung cancer is, there are quite a few survivors out there. Some of us are making it! HOPE!!!

The Irving summit was free. Once again, I stepped outside of my comfort zone and attended. Robert went with me … at least for a little while. I had an enjoyable time, meeting other lung cancer survivors, hearing what the guest speakers had to say, eating some good food…!

I learned more about the National Summit that is held every year in Washington, DC. The Foundation pays for first time attendees to go – airfare and hotel room!! Last year, there was a small $50 fee to attend. I wanted to go!!!

I had so much fun at the National Summit. I met so many other survivors there. Some had been recently diagnosed; some have been surviving for many years. Some were young, some older. Some smokers, some not. A diverse group of people brought together by disease. So, we shared one thing in common – the burning desire to fight – and to fight HARD – to beat this formidable foe.

There was a lot of laughter and plenty of good times at both Summits. There were super people everywhere. And great food. And informative speakers. Very informative speakers. We have lung cancer, but we also have lots of reasons to have hope. That’s the message … and that’s the truth.

So. The journey begins! A walk in Arlington, TX. A HOPE Summit in Irving, Texas. An annual HOPE Summit in Washington, DC … a connection to LUNGevity.

Immunotherapy

As anyone who reads my blog knows, I have been getting immunotherapy for over two years. I asked the nurse yesterday how many treatments I have received. Yesterday was number 56. Which might actually only be number 55 in reality. I had to miss one treatment because I broke my arm and had to have surgery just weeks after beginning the clinical trial. Either way – a lot! I am nearly certain I am the only person in the trial in the Dallas area and that that has been the case for at least a year. Maybe longer.

You will never meet a bigger proponent for immunotherapy or clinical trials. I have gained my life back because I took that step and joined a clinical trial. I am so lucky because for some reason, I am that person that the immunotherapy really, REALLY works well for.

Well, the fact that I am in a clinical trial and doing well on immunotherapy has opened some big doors for me. BIG doors! Some of them, scary doors!

Katie Brown … of LUNGevity fame … asked on our LUNGevity Facebook group several months ago if anyone was receiving immunotherapy. I quickly raised my hand – again, I love immunotherapy!!

American Association for Cancer Research

The next thing I know, I got an email from the American Association for Cancer Research (AACR). They wanted my story. I said, “sure.” I thought they wanted me to sit down and write a blurb about my experiences with immunotherapy. I expected to spend a half day or so writing and perfecting. I thought I would send it away and that would be that.

Except, I was thinking wrong.

The AACR didn’t want me to write my story. They wanted me to TELL my story. To a video camera and still camera. To people. Uh. No. I don’t DO public speaking. I just don’t.

I grew far less interested. I am camera-shy and I do not … do not … do public speaking. Even when that public speaking is in my living room to only a few people.

So, I started just not answering emails from AACR. Because camera crews (still and video) were not my cup of tea. And not at my house … I HATE to clean house…

Well, responses to emails or not, the AACR was moving forward with plans to come to my house to video me telling my story. I got an email on a Monday that the film crew would arrive at my house the following Wednesday at 10 AM.

There really was no backing down at this point.

I should say that the AACR is an AWESOME organization. It has been around since 1907. It is the oldest foundation in American dedicated to cancer research. Some of the best minds in the US are involved with it. This is no rinky-dink organization I am dealing with!

Film Crew Arrives

So, on that Wednesday, I got up early to do a little cleaning. I finished early, so I fixed Robert and me some breakfast. I was washing dishes when the phone rang and I was informed the film crew was there. Over an hour before I expected them. I hadn’t even had my shower yet!

Thank goodness I am not a worrier! Much of a worrier, anyway. I just told them I would be out as soon as possible – I had to get a shower!

It was a ton of fun to do the photo shoot and video. I have never … and will probably never again … had such an experience. ¬†I had a blast.

The interview, photos, and filming took about 5 hours. The editors managed to get a single page story and a 4:27 minute video! Amazing work because they managed to capture me well, especially in the video.

Here are the results:

http://cancerprogressreport.org/2015/Pages/fernandez.aspx?Page=0 (written story)


My story joins the stories of 49 other cancer survivors. Every year, for the past five years, the AACR has featured 10 survivors in their annual Cancer Progress Reports. I am featured in the 2015 report. It is an awesome report. If you are interested in facts about cancer, you’ll be interested in seeing the entire report:¬†http://www.cancerprogressreport-digital.org/cancerprogressreport/2015?pg=1#pg1

Washington, DC – Capitol Hill

I was told I would get a subscription to a magazine produced by AACR for participating in the video project. So, imagine my surprise when I got an email inviting me to attend the release of the report on Capitol Hill as a guest of the AACR.

I quickly responded that I would love to come to DC to attend the release!
In a day or two, I got another email. I was asked if I would make myself available to the press … and … would I be interested in being a presenter during the release of the report on Capitol Hill?
Hello???? Remember??? This is Donna. She is NOT a public speaker. Not even close. And you want her to speak for FIVE MINUTES to top government officials on CAPITOL HILL???

Speak in WASHINGTON, DC??? ME??????????????

Well, I said I would be happy to make myself available to the press, but I was the wrong person to do the speech. I cannot emphasize enough – I am NOT a public speaker. If I was, I would have a lot more money than I do right now because I was given many opportunities to give workshops about grant writing. Because of my extreme fear of public speaking, those workshops didn’t go well … and I quit even trying. And now, you’re asking me to speak on CAPITOL HILL????

I was encouraged again to speak. I can’t understand why. And, I really can’t believe I agreed to do so. But I did. And, I was really glad that I did.

 

I was only given five minutes to speak. That sounded like a LOT of time when I was first told I had that long. But, trust me, getting a speech down to just five minutes is a challenge! Especially for someone as verbose as I am! But, I did it … at least within a few seconds.
I prayed. Lots of people prayed. I practiced. Thank God for good friends who were willing to help me – read the speech, comment on it, listen to it … When I went to Capitol Hill, I was prepared. And God did the rest – He kept me calm and allowed me to speak with little fear.

 

 

See the dog? That’s Tank. He belongs to my awesome agility instructor, Ed Scharringhausen. Despite being very busy getting ready for an inaugural agility trial on Luke’s Field, Ed took the time to help me edit my speech … and to listen to me read it. When I was reading it to Ed, my friend Linda, and their dogs, Tank sensed my fear. He doesn’t really know me, but he knew I was really nervous. So, he got up and came across the room to sit right in front of me. He sat tall and straight for the entire speech. I petted him and relaxed some.

I mentioned that I wished he could go with me to Washington. Well, he obviously couldn’t go, so I took the next best thing. His picture. And he sat right there on the table beside my speech the entire time.

Looking out into the room on Capitol Hill before my speech

 

 

The speech went so much better than I could have ever, ever anticipated. All of the prayers worked! I had many people seek me out later. They told me that my speech made them cry, that they connected with me, that they didn’t know WHY I said I wasn’t a public speaker (if they only knew…)…

The fact is, my speech made me cry too. I just barely was able to tell the audience about Kiersten Dickson, my young friend who died at only 20 from lung cancer. It is a good thing I saved her story for the end. I hope at least one heart was touched enough by what I had to say to fight for more funding for medical research, especially for research benefiting those of us with lung cancer.

 

Washington, DC – The White House!!!

It seemed like every time I opened my email, I was surprised by something else exciting! I just grinned from ear to ear when I opened the email that said the AACR and the survivors attending the release of the 2015 Cancer Progress Report were invited to a meeting at the White House!! You have just got to be kidding me!

We rushed … and I do mean rushed … from Capitol Hill to the White House. It isn’t good to be late to a meeting at the White House. But we were.

There were long lines waiting to get through security to get into the building. The building that wasn’t white, I might add. I was very confused.

 

 

I thought maybe we had to pass through this building to get into the White House?? I kept saying, “But this building is not White!!” Well … our meeting with Obama’s Domestic Policy staff was technically NOT in the White House, I was disappointed to learn. We actually met in this gorgeous building – the Executive Offices, which are right next door to, but are not, the White House!

As I said, the lines were long. Full of people – important and self-important. They were not all that happy when our group was whisked in front of them! At least one of those standing in the heat waiting his turn to go through security was a governor of some state. I forget which one. I am sure he couldn’t understand why we got preferential treatment. I’m not quite sure why either, but we did!

Once we were through the three levels of security, we were finally on our way to our meeting.

The ceiling in the vestibule. All different. All gorgeous!

 

Long, shiny hallways. Notice the gold handrails on the stairs. ¬†The young lady was one of those we met on the President’s Domestic Policy Staff.

The building was very quiet. Very uninhabited. I wasn’t sure how many pictures I could get by with taking so I didn’t take a lot. I didn’t want my camera confiscated! (As it turns out, I think it would have been fine to take as many as I wished. But, to say I was a little intimidated is an understatement!)

Our meeting was a good one. It was relatively small. AACR staff, Obama’s staffers, and cancer survivors – all beneficiaries of the latest and greatest cancer research.

 

Green “Appointment” tags for US citizens; pink for non-citizens. If your tag wasn’t green, you had to be escorted everywhere. Even with our green tags, we were escorted everywhere! I wore a pretty blue jacket, but it was warm in the Executive Offices! Conserving energy, I suppose.
The four women in the middle of the picture are members of Obama’s Domestic Policy Staff. They are young … smart and powerful. And as nice as could be.

 

AACR leaders.

Our meeting probably lasted 45 minutes or an hour. I honestly failed to look at my watch so couldn’t say for sure. I felt like the young women were willing to take as much time as needed for the meeting to be a success. I didn’t ask anyone from the AACR staff, but my guess is that they did feel it was a very successful meeting. Had I been one of them, I would have been very pleased. Obama’s staff was very interested in working with groups like the AACR to get medical research moving. That is good news for everyone, I think.

When we left, we were taken out a side door so that we could stand next to the White House. We were mostly all very excited by that!

The hallways go on and on … and they are beautiful. This is a very old building, but it is maintained perfectly.

 

 

The Presidential flag! Maybe I should have tried to peek into the office beside it!!

 

Here we are! Right beside the White House! (This picture was taken as we stepped out of the Executive Offices building)
Standing in the parking lot, we saw people coming and going to meetings at the actual White House! We had to keep moving out of the way because the visitors were dropped off at the canopied door.
I never saw soooooo many black Surburbans!! They were everywhere!!! Some other makes and models were represented, too, but they were all black!

 

 

Do you see it? The Presidential Seal? This is as close as I got to actually stepping into the White House!
The armored car.

I just cannot tell you how special this day was!! I would have never, ever, in my wildest dreams expected to speak on Capitol Hill, especially given my extreme fear of public speaking, or to go to the Executive Offices of the President.

Reception

There was still a reception and an awesome dinner. Both were just unbelievable. The reception was held in the Kennedy Caucus Room in one of the Senate buildings. The Senate buildings are much more beautiful than those for the House. There is lots of marble, gorgeous ceilings, the feeling of power. In the House buildings, I just felt like I was in old, but fairly well-maintained buildings. They were nothing special.

 

 

 

 

Many organizations took place in the Rally for Medical Research. Did it make a difference? I can only say, “I hope so.”

 

The AACR president, Dr. Marge Foti.

 

 

 

Many famous events took place in the Kennedy Caucus Room (before it was so-named!)

Let me tell you – the hors d’oeuvres served at this reception were delicious!!! I was speaking at lunchtime so failed to get any lunch. I was starving when we arrived at the reception. I was full when we left!! Coconut chicken, some kind of fresh salmon wrap, cheeses, chips and crackers, I can’t remember what all. There were a variety of wines and beers – all domestic, I heard – available as well as sparkling water and some soft drinks, I think.

I was getting tired at this point and didn’t get a bunch of pictures. Wish I had taken some of the food! So I could eat my heart out now! I wondered how people that attend many of these functions stay slim.

 

Dinner

We came back to the hotel at about 7:45 PM. I was dragging. We were given the opportunity to change clothes (and shoes … ahhhhhh! My feet were so happy to change into tennis shoes!!!) and rest just a moment before returning to dinner at 8:15.

I planned to stay at dinner no longer than absolutely necessary. But, that was before I ended up at the first table – the one with the heads of cancer clinics all over the US. I can’t remember all of their names and, unfortunately, never caught the last name of one who was so kind to me. Her name was Karen. She heads a cancer clinic in Philadelphia. Her specialty is prostate cancer. And, she is one of the kindest souls I have ever met. She made sure that I felt like a part of the group the entire dinner. When there was an “inside joke,” she made sure I understood it. She always explained who was talking and what their specialty was. I wish I knew her full name. I would love to send her a thank you card. For her compassion. For her humanity.

It was so very interesting sitting at that table and listening to top doctors discuss cancer and research. I was suddenly not tired at all. I didn’t get back to the room until after 11 PM.

The food was absolutely divine. The company and conversation even better. I was so on top of the world after this day that I couldn’t begin to fall asleep.

Which is probably a good thing, because I had to pack everything up so I could turn back the room the next morning!

What Does Lung Cancer Look Like?

What does lung cancer look like? Do you suppose that it looks like someone who is about 70 years old, very emaciated, with a cigarette in her hand? Someone who looks like they are about to die?

Or do you envision a 20 year old girl with her whole life ahead of her? Except that she’s currently bald from her chemo treatments and searching desperately for the drugs that will keep her alive? Or, maybe you see a beautiful, cheerful 24 year old young woman who has already lost part of her lung? Girls who were physically active; girls who never smoked; girls who weren’t around smoke?

In the picture below, three of the people are not lung cancer survivors. Can you guess which three? I bet not. Because lung cancer doesn’t have “a look.”

Photo credit: Randy Elles Photography¬†LUNGevity Foundation¬†‚ÄĒ in¬†Washington, District of Columbia.

Who gets cancer? Is it the 20-something college student? Is it the 30-something veterinarian? The 40-something TV reporter? The 50-something long-distance bicycle rider? Is it your 60-something vegetarian neighbor? Is it your postal worker? Your doctor’s office receptionist? The professional baseball player? The IT superstar down the hall? Your doctor? If you answer “yes” to all of these, then you are absolutely correct.

The fact is, no one is immune. Whether or not they smoked. Whether or not they exercised. Whether or not they ate only vegetarian foods. If they have lungs, they are susceptible to getting lung cancer.

The scary thing about lung cancer is that there are not often many symptoms until it has advanced so far that there are not a lot of treatment options. If you suddenly develop a smoker’s cough, but you didn’t smoke, or if you have extreme shortness of breath, wheezing, or asthma-like symptoms, or if you begin to drop weight for no reason, you might have lung cancer. A CT scan can be done in a matter of minutes to detect if there are tumors in your lungs. The earlier lung cancer is detected, the more likely that you will survive.

 

Photo credit: Randy Elles Photography¬†LUNGevity Foundation¬†‚ÄĒ in¬†Washington, District of Columbia.

Here’s a link that I hope will stay active for a long time. It has pictures that were contributed to WhatNext.com by cancer survivors. Now, these people do not all have lung cancer, but they are all surviving some kind of cancer. I hope you’ll follow the link. I think you will be encouraged.

What does cancer look like?

I don’t know about you, but what I notice most is how many of these individuals have large, happy smiles. Smiles that reach their eyes. These are cancer survivors (some who are “NED — No evidence of disease” and some who are newly diagnosed and in the throes of chemo). They have cancer. Cancer doesn’t have them.

 

Why the Inequities?

You know, I try to stay really upbeat most of the time. I am fairly successful at it. Like Dann Wonser says, most trials and tribulations we lung cancer survivors face are very tiny, while cancer is VERY BIG. (http://www.dannwonser.com/blog/a-little-disaster-can-be-a-good-thing/5/4/2015 … you really HAVE to read this, it is hilarious!). I think many cancer patients agree that we no longer sweat the small stuff … and most everything we face in our lives besides cancer is small stuff.

But, I came across the following article today: http://www.ksat.com/content/pns/ksat/news/2015/05/08/questions-raised-over-funding-for-cancer-research.html. It distressed me a lot. As did most of the reaction I received after I posted on Facebook about it.

The article was written by Myra Arthur, an anchor/reporter for ABC affiliate KSAT-12, a San Antonio, TX affiliate. Ms Arthur questions, as do I, why funding for lung cancer research trails so far behind that of other cancers, especially breast and prostate. Her advocacy makes me wonder if somehow her life, too, hasn’t been touched by lung cancer. Most people ignore it otherwise. That’s just the sad fact.

Facts – Ho Hum … But Necessary!

Here are some facts about cancer – some good, some not so good:

1. The two largest federal agencies that fund cancer research are the National Cancer Institute and the Department of Defense. These two agencies funded breast cancer research at $802 million in 2014. Prostate cancer research received $334 million.

2. Breast cancer is expected to be found in 234,190 men and women in 2015. (That’s right! Men can get breast cancer, too!) During 2015, 40,730 people are expected to die from breast cancer. That’s too many, for sure, but basically, if you get breast cancer, you have very good odds of surviving at least five years. These odds have increased exponentially over the past few years as more and more attention has been given to the disease.

A whopping 29% of all cancers diagnosed will be breast cancer. About 15% of all cancer deaths result from breast cancer.

3. Prostate cancer is the most common cancer among men. It nearly seems like every man is going to be diagnosed with it if they live to be old enough. I have gotten so cavalier about it … “oh! prostate cancer. minor inconvenience. treat it. be done.” I wasn’t quite so sure of myself when one of our very best friends died from it only months after diagnosis. (I think he waited REALLY long before seeking treatment and it had metastasized throughout his body.)

So, the facts for prostate cancer are: 220,800 men are expected to be diagnosed with prostate cancer during 2015. Prostate cancer will account for 9% of all cancer-related deaths this year.

4. And then there’s lung cancer. Research funding from the two major federal agencies for this disease during 2014 was a whopping $265.6 million. Let’s remember. Breast cancer got $802 million and prostate got $334 million. Hello????

During 2015, it is estimated that 115,610 men and 105,590 women (total of 221,200) will be diagnosed with lung cancer. Most of these diagnoses will be late stage because lung cancer typically doesn’t make itself known until it has metastasized. It is somewhat treatable if found in early stages, but in late stages, the prognosis is downright bad.

Lung cancer is expected to claim the lives of 86,380 men (that’s 28% of all cancer deaths)¬†and 71,660 women (26% of all cancer deaths) for a total of 158,040 people succumbing to lung cancer in 2015. An awful lot of families are losing their children, their moms and dads, and/or their grandparents to this insidious disease.

So, the likelihood that you’ll get breast cancer if you are a woman or prostate cancer if you are a man is somewhat greater than that you’ll get lung cancer. Pray that you get one of these cancers and not lung cancer. Because, if you get breast cancer, you have an 89% chance of surviving at least five years. Prostate cancer has even better odds. Over 99% of prostate cancer survivors will still be living life in five years.

But, if you are one of the unlucky ones who gets the lung cancer diagnosis, you have much worse odds. Let’s just take a quote right out of Cancer Facts and Figures 2015, a publication of the American Cancer Society:

 The 1- and 5-year relative survival rates for lung cancer are 44% and 17%, respectively. Only 15% of lung cancers are diagnosed at a localized stage, for which the 5-year survival rate is 54%. More than half (57%) are diagnosed at a distant stage, for which the 1- and 5-year survival is 26% and 4%, respectively. The 5-year survival for small cell lung cancer (6%) is lower than that for non-small cell (21%). 

(http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-044552.pdf)

Wow.

Outrage

So, does this make any sense to you? Because it sure does not make sense to me.  It breaks my heart at the same time as it totally infuriates me.

Did you know that ONE in FIFTEEN will be diagnosed with lung cancer? Those are some pretty scary stats. Most of us have more than 15 people in our circle of family and friends. That means you are very likely to be directly affected by lung cancer. Either because a loved one is diagnosed or because you, yourself, get that news someday. When the word comes that you or your loved one has lung cancer, I wonder if you are going to wish more had been spent on lung cancer research? Because right now, the odds that you will live even one year after lung cancer is found in your body are very, very slim.

There is no stigma associated with getting breast cancer or prostate cancer or colon cancer or, I suppose, any other cancer. But, people, in general, seem to think that people who get lung cancer deserve it. After all, isn’t lung cancer the disease of smokers? People know they are testing fate when they pick up those cigarettes. So, let them just suffer the consequences of their actions, right?

Well … first of all … NO ONE and I do mean NO ONE deserves to get cancer of any kind. It is a fact of life, I guess, that most all of us will be impacted in some way by cancer if we live long enough, but none of us deserve to get it.

Cancer is not a fun disease to treat. People are sick, sick, sick. And often lose their hair. And all of their energy. And their memory.

And, it is certainly not a cheap disease to treat. One … ONE chemo treatment that I had cost over $34,000 and that was after a $22,000 grant was applied. I had those treatments every three weeks for six or seven months. And, that was just the cost of the drug. It didn’t include the doctor, blood tests, or facility usage. Cancer can wipe a family out financially in no time.

But, back to the stigma associated with lung cancer. Did you know that 60 to 65% of all lung cancer survivors (because you become a survivor from the moment you are diagnosed) either have never smoked or are former smokers? In my case, I had broken the addiction five years previously. My cancer is one that both smokers and non-smokers get so there is no clear evidence that my smoking caused my cancer. It is also the same kind of cancer as my dad died from back in the 1970s.

I attended a LUNGevity HOPE Summit in Washington, DC last week. I was amazed at the 150 survivors at that event. One girl was only 20. Her late-stage lung cancer was found (finally) when she was 19. Another beauty was 24. She lost part of a lung to lung cancer. Heart-breaking. Neither girl smoked. Both were gorgeous. Both were physically fit. Both girls had such a difficult time convincing their doctors that there was something more than asthma going on that they didn’t have their cancer discovered until it had metastasized.

Even doctors have an errorenous  image in their heads as to what a lung cancer patient looks like. So, while they are lollygagging along treating symptoms and never even entertaining the idea that there might be something more serious going on, the cancer cells are spreading all over the body.

I met men and women who bicycle hundreds of miles a weekend. Coaches. Vegetarians. Physically fit, well-nourished, non-smokers. Lots of them. Lung cancer survivors, one and all. I don’t know that an average age of attendees was calculated, but I would guess it was around 45, maybe less.

All of this is to say that your mind’s image of a lung cancer patient is probably wrong. He or she is probably as physically fit as you are. And, s/he is probably not as old as you imagined. And definitely likely does not have tobacco stained fingers that are still shakily raising that nasty cigarette up to be smoked. He or she might be your sister or your brother, your mom or your dad, or your best friend. Or you.

The stigma that just won’t go away STINKS. Worse than cigarettes and we all know how bad they stink. And, the stigma is far more deadly than cigarettes.

It is causing doctors to misdiagnose or delay diagnosis until the odds of survival have decreased to almost nothing. It is causing the general public to think it is fine to underfund lung cancer research. It is causing a lot of people to die deaths they do not deserve.

The Good News

The news is BAD when we look at funding, awareness, and the number of people being diagnosed and dying from lung cancer. There really are not a l ot of optimistic things to say about those things.

But, in spite of the limited funding, our scientists and oncologists are making significant progress. This is an exciting time in the research field. They are on the brink of making some discoveries that could change some of those dire statistics.

At the HOPE Summit, we heard from some of the up and coming talents in the world of lung cancer research and they were inspiring. We have targeted therapy drugs coming. Immunotherapies. Perhaps even some chemotherapies that will be less toxic. I can’t imagine the inroads that would or could be made if only lung cancer was given a significant amount of funding like the other two major cancers get.

Tehre are a few groups out there working hard to raise awareness. As awareness is raised, perhaps more big corporations and well-known names will jump on the bandwagon. CVC has recently begun a campaign to raise money for lung cancer. It is the first corporation I know of to begin backing such a campaign. As awareness is raised, there will be more money for research. But, there will also be more lives saved because the image of the old smoker with lung cancer will be replaced by the young vital nonsmoker with lung cancer. People will begin to realize that they are not immune to it just because they never smoked. And then we will have real progress. It is a day I hope I live to see and I have developed a passion for doing what I can to help that day come sooner rather than later.

Won’t you help me?

I just came across another article that I want to share here. It was written by Jamie Gorenberg who wrote for “Desperate Housewives” after her mom, a person who quit smoking 40 years earlier, was diagnosed with lung cancer. I want to share it with anyone who happens to read my blog because she says, more eloquently than I, how it feels to have someone you love diagnosed with lung cancer.

http://www.standup2cancer.org/article_archive/view/lung_cancer_coming_soon_to_a_non_smoker_near_you

 

Attitudes and a Crazy Bus Ride!

 

Last weekend, I attended LUNGevity’s National HOPE Summit that is held every year in Washington, DC. If you have lung cancer, consider attending a HOPE Summit. You will leave so uplifted and so hopeful! There is much happening in the lung cancer research field right now. These are exciting times!
But, the purpose of this post is actually to tell a story about a mishap that could have caused tempers to flair but instead found everyone laughing and having a great time.
LUNGevity treats its participants like royalty. On Saturday night, we took buses to the Old Angler’s Inn. A number of us loaded up onto Bus #5 (the last bus). I noticed right away that our bus driver had Google map directions that he was trying to read as he was driving. I didn’t say anything to anyone else about it until we had been on the road for quite some time and the driver started to make a turn, stopped pretty much in the middle of the intersection for a long while, and then continued forward back onto the freeway. DC traffic is pretty wild … his driving was making it worse!! Anyway, I mentioned to the person I was sitting with that the driver was clueless as to where we were going.
It wasn’t long before that fact filtered through the bus and soon we had several backseat drivers telling the actual driver where to turn next. By now, we had been on the road well over an hour to take a trip that was supposed to have been less than 30 minutes away.
About the time we had gotten the driver back on track (we were going to have to retrace most of the route we had already taken in order to get to the restaurant), all sorts of warning signals started ringing on the bus. We weren’t ever sure if we were nearly out of gas or just what the problem was, but the bus was in distress! The bus driver kept saying he was given “bad bus.” (He didn’t speak a lot of English)
We got him to pull of into a scenic area … for a moment . .. but then he pulled right back out into the DC traffic … bus dinging away with the warning bells … and bus without a lot of compression. We had a number of drivers going around us giving us the one-finger salute…
Finally, the driver was convinced to pull off into a lovely park area while we waited for the bus company to send help! Some of us bailed off of the bus so he would, hopefully, not decide to reenter the traffic!!!!

 

 

 

It was getting late. Most of us had not eaten for hours!! The groups that rode buses 1-4 had eaten and were now just waiting on us and wondering where in the world we were!
Everyone on that bus was either a caregiver or a lung cancer survivor. You did not hear complaining. What you heard was a ton of laughter and multiple jokes. We have learned that little incidents like that make life interesting. There was no reason to get angry or uptight. I suspect if all of us had been on a bus together BEFORE we were acquainted with living with cancer, the attitudes would have been far, far worse. Trivial little things like that are indeed trivial to us now.
It ain’t a picnic to have cancer, but you know, it sure does something to improve attitudes and outlooks on life. Or it has for those of us who attended that Summit.
For a hilarious account of this experience, go read what Dann Wonser had to say about it:

 

Thanks LUNGevity

5th Annual LUNGevity National HOPE Summit 

What is it?

I am home now from an AWESOME weekend that was spent in Washington, DC at the LUNGevity National HOPE Summit. It is held for lung cancer survivors and their caregivers every year. This year was the 5th anniversary. The event has grown from 17 survivors meeting in a small room to over 150 survivors, plus their caregivers, meeting in a large ballroom.

Lung cancer survivors who are attending for the first time are provided with the opportunity to apply for a generous grant that pays for airfare and hotel costs. Wow! What an opportunity!!

http://lungevity.donordrive.com/index.cfm?fuseaction=cms.page&id=1080&eventID=534

 

Lots of HOPE

It was fascinating being in the ballroom with so many lung cancer survivors. We spanned many years. One gorgeous young lady is only 24 … and she’s already recovered from having part of a lung removed due to lung cancer. There were way too many young people there in their 20s, 30s, 40s … and then there were some of us who were older, too. Young, old, skinny, fat … black, white, yellow, brown … cancer does not care. It attacks us all.
No matter the age, race, nationality, or religion, the group as a whole was the most cheerful, hopeful group ever. Considering we are fighting the most deadly form of cancer there is, that’s remarkable in and of itself!
LUNGevity has trademarked May as Lung Cancer HOPE Month. We are hoping to raise awareness through a “What Takes Your Breath Away?” video campaign. I don’t think it will catch on among most of my friends … I’m sorry, they just are not all that supportive of this particular fight. ¬†I don’t really know why that is the case. Regardless, I am hopeful that it will gain popularity among others so that more people will be aware that lung cancer happens to people with lungs, not just smokers. (See below)
It was wonderful to hear doctors and scientists at the HOPE Summit talk about the new treatments that are coming down the pike. It is sad that lung cancer is so poorly funded. It kills more people than any other cancer. In fact, during 2015, it is expected to be responsible for 27% of all cancer deaths among men and women. (http://www.cancer.org/acs/groups/content/@editorial/documents/document/acspc-044552.pdf)
According to the American Cancer Society publication (link above), 44% of lung cancer patients will survive one year. Only 17% are expected to survive for five years. For late-stage cancers like mine, only 26% survive a year and 4% make five years.
I am so fortunate. My traditional chemo regimen quit working about 7 months into my diagnosis. Were it not for the clinical trial I got into, I would have probably been one of the 74% who don’t survive a year. But, because of research and new technologies, specifically, immunotherapy, in my case, I am hopeful I will be in the 4% that are still alive and well five years after diagnosis.
But, I disgress … back to the Summit!
The packed room was filled with people who were quick to laugh, cheer, and tell their stories. Despite challenges, I don’t think there was anyone there who was not filled with lots of HOPE. Doctors and scientists were hopeful, too! Lung cancer research needs much, MUCH more funding, but even with limited research dollars, the scientists and doctors are making tremendous strides. It is so exciting to hear about targeted therapies that attack just the bad cells and immunotherapy that works by building up the cancer patient’s own immune system so that it can fend off the cancer. Anyone who has ever suffered through chemo knows how exciting it is that there are drugs available or coming soon that don’t send you to bed, wondering if treatment is worse than just dying from cancer.
I am sad that I didn’t take pictures at the National HOPE Summit. I was so involved in listening and chatting with others who have “been there done that,” that I never got my camera out of my purse. But, I’ve seen lots of pictures that other people took. And the smiles are infectious!!! People were having FUN all through the hotel!

Lung Cancer Awareness Campaign

So, LUNGevity is hoping the lung cancer awareness campaign will go viral. I mentioned it above, but wanted to both provide more information for those of you who might wish to participate and to post my first attempt. I decided today that I was going to try to do several. There are LOTS of things that take my breath away besides lung cancer. I’m going to try to highlight several of them. Some of my friends will probably be tempted to start blocking my Facebook posts because they are going to be tired of hearing about lung cancer. But, it is just that important to get the word out. Lung cancer is not a disease to ignore. It just isn’t.
To learn more about the campaign, go to http://www.lungevity.org/support-survivorship/lung-cancer-hope-month .  Please, please, PLEASE consider participating. The more people who will jump on the bandwagon, the better.
I’d be surprised if anyone reading this blog hasn’t been impacted at some point by lung cancer … a grandparent, parent, sibling, or friend or friend’s family … lung cancer is so common that almost everyone knows someone who has or has had lung cancer.
Let’s get the word out that:
  1. No one, absolutely NO ONE, deserves to have any kind of cancer, INCLUDING lung cancer.
  2. Smokers are NOT the only people who get lung cancer. Young, athletic people who never smoked are being diagnosed way too frequently. Sadly, doctors are MOST likely to let their cases go on and on before diagnosis … even doctors are influenced by the old campaigns that blamed smoking alone for lung cancer.
  3. There is HOPE!!! There is not as much as I wish there was, but there is hope. And if we could get more $$$$ directed toward lung cancer research, that hope would be multiplied many times over. It is incredible what our research community has done with such limited funding. It could grow exponentially if we could get more money to them.

My First Attempt

I tried doing a selfie video this afternoon for about an hour. I never really got anything worth publishing. I may set up my good camera on its tripod and try again tomorrow or Wednesday. In the meantime, here’s what I’ve come up with for my “What Takes My Breath Away” video: