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:

https://www.youtube.com/watch?v=q28V5zmSRIQ&feature=youtu.be

+LUNGevity Foundation 

Still Living with Cancer!

I haven't updated my blog in a long time. How does that help provide hope? It doesn't  ... so here i am, hopefully able to provide hope to any of you who have been diagnosed with lung cancer or who have loved ones who have been diagnosed.

I was first diagnosed in October 2012. I have passed the critical one year milestone and will see the 3 year mark, God willing, in just a few more months. Trust me, i thank my Lord every single day for my life. So very many don't make it even a Year.

I love being alive and on this earth. Here to enjoy my family, friends, and dogs. But, God is good whether He decides to leave me here on earth or bring me home to Him. Talk about a win-win situation! i just can't lose!

While i am here, i try hard to live every day to the fullest. Fortunately,  i feel good, thanks to the immunotherapy i receive every two weeks. Barring bad news from the CT scans i had today, my tumors have remained stable since i began my immunotherapy clinical trial in 7/2013. Praise God!

So, what does living look like For this stage IV lung cancer survivor?

Dogs, dogs, dogs!

My dogs continue to dominate my life. They bring me such joy and give me so many reasons to want to live.

It is funny to post a snow picture since it is nearly 80 outside on this late March day. But, those two lovers of life get such joy out of the very limited snow we get here in Texas. Cotton also gets great joy in rolling in coyote poop. You can see how nicely she decorated herself in this picture!

The dogs and i meet our friends Linda and Louie (her precious Pom/Eskie mix) nearly every day to walk. We used to walk at least 3 miles every day. Lately,  we have cut that down to around two miles because we come back to a field to practice obedience/agility skills. 

Linda and I are fortunate enough to be taking agility lessons with Ed Scharringhausen at Run As One Agility. I have taken lots of classes over the last 6 years. Our classes with Ed make all others pale in comparison. We practice the skills he teaches us all week so that our dogs will be ready to move on when we return to class.

We also take classes with Pam White. Like Ed, she will analyze our runs from trials and is working hard with us to teach us distance and obedience skills. We are so fortunate to have two teachers who put so much into us and our dogs.

So, what's this agility about which I speak so fondly?

This is Barney and me running a jumpers agility course. The handler directs their dog around a numbered course. Speed and accuracy are required.

Here is another run from the March 2015 Run As One trial:

Here, the dog must navigate a number of different obstacles. Barney and I LOVE to play agility.  As you can see, it takes a great deal of energy. 

I have not been able to participate in lessons or trials like i did before i was diagnosed. My stamina is not as good and my pocketbook is much slimmer than it was. However, with the current 2 classes a week and, hopefully,  at least a trial a month, we are coming back!

Cotton doesn't play agility as much. She's an awesome agility dog, but she doesn't always care to participate. Like all sports, it is somewhat expensive. Since my funds are now so limited, i mostly train and trial with Barney, my boy who loves to please and loves to play agility.

As you watch the videos, remember it is a stage IV lung cancer survivor running those courses. Awesome, huh?

Just for fun, i will post a video of Cotton from the December  2014 trial. First, you will see Barney run the course as designed and then you will see Cotton. 

Hmmm, the formatting just went south... 

Here we go! Formatting restored!

Other Interests

My favorite thing to do is spend time with my dogs and friends who also love dogs. But, especially as the weather warms, i also enjoy container gadening, watching the birds, and photography. 

For the first time, i am trying herb gardening. I love my 3-tiered pot. Just bought two more from Amazon ... one for mom and another for me. I am going to put some tomatoes and strawberries in the new pot. Not sure what else... i can't wait to see how it goes! Fresh tomatoes and strawberries sounds heavenly though, huh?

I haven't taken many pictures lately nor have i had time to really spend watching my birds. Soon, the hummers will be back ... can't wait!! Will have to find some time to enjoy these activities. 

It is also nearly bluebonnet time here in Texas. I LOVE the bluebonnets. I combine 3 loves during the month or so they are out: my dogs, flowers, and photography!  Here's an example from last year:

Well, Robert is hungry. I need to end this and get him something to eat. 

Here's my final thought : if you have been diagnosed with lung cancer, even late stage lung cancer, do not give up! There is still life to be had. Grab it with gusto!

New Stats released by CDC

http://www.cancer.org/research/cancerfactsstatistics/survivor-facts-figures

The CDC just released its latest statistics for cancer survivors.  A survivor is anyone who has been diagnosed with cancer and is still alive. They may or may not still be undergoing treatments. They may have lived 20 years since diagnosis or 20 minutes.

The news in the report is actually quite good for many cancer survivors. It seems research has finally gotten a handle on lots of cancers and, while it is a huge inconvenience to be told you have cancer (understatement?!), your chances of surviving for at least five years are remarkably good.

For instance,  prostate cancer is the most frequently diagnosed cancer. Over 233,000 men were told they had prostate cancer in 2014. Fortunately,  99% of them will be alive in five years. Caution: 1% don't make it. Don't wait around! One of our best friends died of prostate cancer and it wasn't pretty.

The next most common cancer is breast cancer. Pink anyone? (Is anyone else as tired of the pink campaign as i am??) In 2014, 232,670 men and women (but mostly women) learned they had breast cancer. Probably in large part because of all of the awareness campaigns and money thrown at research, 89% of breast cancer survivors will live five years or more.

The news goes south quickly from there. The third most common cancer is lung cancer. A whopping 224,210 people were told they have lung cancer in 2014. The majority won't live a year. Only 17% will live to see that magical five year mark. And yet, funding for research into curing this cancer remains dismal.

There is that awful stigma that accompanies a lung cancer diagnosis. It is the smokers' disease. And, i guess people who smoke or ever smoked deserve to die. And, i guess the thousands who never smoked but get lung cancer deserve it too. i presume this is true because there is so little support for finding cures. I am fighting to change that. So is LUNGevity (lungevity.org).

There are two cancers more deadly than lung cancer. Fortunately, they are not as prevalent. Only 6% of the 46,420 people diagnosed with pancreatic cancer will live 5 years. Liver cancer affected 33,190 in 2014. Only 16% of those people will be alive in 5 years.

These stats are dismal. It is up to us to fight for change. The more of us who lift up our voices, the better. Look at what awareness campaigns have done for breast cancer. It is time to spread the wealth. Other cancers are far more deadly and those diagnosed with them deserve to have hope and the chance to live for 5 or more years.

Please help! If you can't contribute,  you can still communicate the need to Congress and contributors.