Tuesday, September 02, 2014

6 Easy Ways You Can Help Stop Lung Cancer

I am alive because of research.

This may sound like hyperbole, but when I think back to how very sick I was by the time they finally figured out what was going on, it is not hard to believe. It was only once the chemo started working that I was able to walk around and talk without getting short of breath. When we found my ROS1 mutation, I was able to go on the brand-spankin'-new drug Xalkori. This incredible leap of science is able to specifically target the mutation, and it has gotten me to NED. How freaking amazing is that?!?

Sadly, lung cancer research receives very little funding. In the wake of the impressive IceBucketChallenge, several articles have come out addressing the disparity of funding for diseases. The image below, from "The Diseases We Donate To Aren't Always The Diseases That Kill Us," shows that while breast cancer (pink circle) and prostate cancer (orange circle) are very popular places to donate, the number of deaths caused by these illnesses is relatively small (see the corresponding dots on the right side). Both are nasty diseases and I personally know many who are suffering from or have died from them. What this chart says to me is that we are great at donating to these two causes, and both are now benefiting and have achieved high cure rates.

Noticeably absent from this chart is lung cancer, the #1 cancer killer. Below is another version of the graph, modified to include lung cancer. 

See the tiny white dot at the bottom on the left? Compare that to the white circle on the right. Lung cancer causes more deaths than colon, breast and pancreatic cancers combined. Lung cancer in non-smokers is the #6 cancer killer in the US, and it is on the rise in young women.  

So, when I hear about the cuts in research finding it is not just upsetting, it is terrifying. Without advances in research, I would be dead. There is currently another drug in trials - a new and improved Xalkori - that is in the wings for when Xalkori stops working for me. Support for research is vital for me, it the truest sense of the word.

"But what can I do about this?"

I'm so glad you asked. I have assembled an activism smorgasbord for just that reason.

1. For those who like pampering themselves

    Paint your toe nails purple and email a photo of your purple toes to purpletoes@lungcancerfoundation.org, then tweet and facebook it with #purpletoes. You can get your purple nail polish right from the Lung Cancer Foundation for a $25 donation. Click here for more information.
    The girls and I did this a few months ago


    2. For those who like to get political:


      The American Lung Association is hosting the Lung Cancer Call-In Day on Thursday, September 4th to ask congress to increase research funding. All you have to do to participate is call your congressperson on Thursday during regular business hours. 
      "But I can't remember who my congressperson is!"
       That's okay, you can look it up easily right here. All you need is your zip code.
      "But I'll never remember to call on Thursday!"
      Click here to request a reminder email to be sent to you Thursday morning. They are making this so easy!
      "But I've never called a politician before. I'm nervous!"
      That's okay, it's going to be my first time calling my congressman, too. Let's all come back here to the comments section of this post after we do it and post what it was like. We can debrief together!


      3. For those who like mingling with the stars


        Stand Up To Cancer is hosting "the biggest television event of the year" on Friday, September 5th at 8/7 central. And as a flip of the old call-in-to-donate method, in this program the stars will call YOU!

        "Paltrow and Joel Gallen of Tenth Planet Productions will co-executive produce the Sept. 5 broadcast, live from the Dolby Theatre in Los Angeles.  ABC, CBS, FOX and NBC, along with ABC Family, American Forces Network, Bravo, Cooking Channel, Discovery Fit & Health, E!, Encore, Encore Espanol, EPIX, ESPNEWS, FOX Sports 2, FXM, HBO, HBO Latino, ION Television, LMN, Logo TV, MLB Network, National Geographic Channel, Oxygen, Palladia, Pivot, SHOWTIME, Smithsonian Channel, Starz, TNT and VH1 are donating one hour of simultaneous commercial-free primetime for the nationally televised fundraising special on Friday, September 5, to be broadcast live from the Dolby Theatre in Los Angeles. The show will stream live on both Hulu and Yahoo."

        There is already a lot of buzz building on social media about this event, with the hashtag #IStandUpFor.

        Katie Couric favorited a tweet about me!

        4. For those who have a bunch of cash burning a hole in their pocket: 


          There are several excellent lung cancer organizations that will generously help you extinguish the flames by accepting that cash!

          5. For those who have just a little bit of cash burning a hole in their ... phone:


            Text LUNG to 27722 to make a $10 donation to the Lung Cancer Alliance.
            It's quick and it's easy. Who doesn't love easy advocacy?

            6. For those who like doing silly stuff and putting their mug on social media: 

              Join the #WhipLungCancer campaign. Here is my video:

              "But wait a second, aren't you just jumping on ALS's IceBucket bandwagon?"
              Actually, no. The IceBucketChallenge, in its current incarnation, was started by another lung cancer family  to raise funds and awareness for lung cancer. I don't want to take anything away from ALS; it's a terrible disease and deserves its share of the pie, too. But we are trying to bring some attention back to where it started, with lung cancer, but in a new way. Plus I got to introduce my kids to a whole new food group. Who knew food could be sprayed out of a can?

              This weekend I will be in Boston attending the Acquired Resistance Patient Forum, hearing from several of the rockstar docs who are doing the research that is saving my life. I'm really excited to hear what they have to say, plus I will get to meet a bunch of my fellow lung cancer folks in person! I can't wait to get a photo of a room full of people with stage IV lung cancer, who are living well because of targeted meds. Keep that research funding coming!

              Now, don't think that I'm disregarding all the prayers, good vibes, chanting, and more that people have been sending my way. I'm sure all your love and support has played a role in how well I am doing right now. But you know how that old story goes, about the drowned man who went to heaven and yelled at God,
              "I prayed! Why didn't you help me?" 
              God replies,
              "I tried! I sent a log, and then a branch, and then a boat...." 
              Take a look through the activism buffet above and see if there is something in there that appeals to you. If not, share this with a friend. Sadly, many of us know someone touched by lung cancer. Let's help turn this death sentence into a life sentence.


              Karen said...

              Very good post, Tori. I'll be doing a number of these things over the next week or so. You'll see at least one of them. Look for my WhipLungCancer video...coming soon to a computer screen near you. ;)

              Anonymous said...

              I will do a walk for lung cancer to raise 1000.00 on May of 2015..in Orlando Fl .I have survived 3 times in 18 months..2 lung cancer one brain tumor.lets kill the beast

              Unknown said...

              Great post Tori! I want to remind people to use hashtag #istandupfor with #lungcancerpeople so we can find you easily to retweet/share/favorite, etc.

              Since the organizations you mentioned don't have a presence in Hawaii, I'm working to bring the first EVER lung cancer focused event to Hawaii... LUNG FORCE. In November we'll have a LUNG FORCE walk in Honolulu, and in February we'll hold the first Hawaii LUNG FORCE Expo to help educate medical professionals in the area of lung cancer. To find a walk near you, go to LungForce.org/walk

              Tori Tomalia said...

              Fantastic! Can't wait to see the video, the ones I've see so far are great.

              Tori Tomalia said...

              That's wonderful - both the walk and your survival. Agreed, let's slay this beast!

              Tori Tomalia said...

              Thank you for helping to educate! Keep up the great work!

              Luna O. said...

              Very nice post, Tori. Looking forward to meeting you and other ROS1-ers this weekend.


              Tori Tomalia said...

              Looking forward to meeting you, too!

              zoecello said...

              Great post Tori. Do you have larger versions of those chart images?

              Tori Tomalia said...

              Thanks! Here is the link to the first:

              The other one was created by a lung cancer survivor and made it's way around twitter. I will tweet it to you.

              Ralph Kapostins said...

              Tori, Truly appreciate you putting in a good word for the Purple Toes Campaign and sending along beautiful sets of purple toes! The pics made Valerie's day and we hope to continue to raise awareness and funding to #beatlungcancer. Hope to meet you some day and for the full story about the genesis of purple toes, please use the following URL: www.purpletoes.org

              Tori Tomalia said...

              Wow, it is exciting to hear from the original purple toes guy! I think it is a great campaign, and what a sweet story about its beginnings. My best to you and Valerie.

              Tori Tomalia said...

              I did it! I called congress and asked for more funding for lung cancer research. I was nervous but it really wasn't hard. How did it go for the rest of you?

              Sara Liz said...

              It's a really superb information. Thanks for sharing..!!
              Keep sharing useful information..!! I'm waiting for other information..!!

              Jordi Tauler said...

              Tori, I admire your strength and all you're doing to help fighting lung cancer and increase awareness. I think this is amazing.
              I've just wanted to let you know that we're a new foundation: Innovation Cancer Research and we want to help new researchers or underfunded researchers developing new ideas to fight lung cancer. We want to promote innovation to help find the cure. Our priority are underfunded and low survival cancers. So, top of the lists is lung cancer. On a second phase we want to add pancreatic cancer to the program.
              I am working in lung cancer research myself. I wish luck and keep strong in this fight.

              Jordi Tauler

              Running Betty said...

              people like you are why people like me and my daughters participate in Relay For Life every year! Much love!!