Wednesday, November 26, 2014

If Not Me, Then Who?

As I hope you know by now, it is Lung Cancer Awareness month, and the members of the LC community have been working our lungs out (see what I did there?) to educate and raise awareness about this horrible disease.

A heartfelt thank you to my friends and family who have put up with me going on (and on and on...) about lung cancer awareness. But it means a lot to me. Obviously.

During this week, this week of thankfulness, 3,000 people in my community will die from this ignored, underfunded, misunderstood, and stigmatized disease. 

3,000 people.

In this week of Thanksgiving I am constantly reminded of just how freakin' lucky I am to still be around today. I can breathe. I can speak. I can write. Too many people in my community are no longer able to do so.

I speak out for myself and on behalf of those who no longer can. I keep talking about it, because so far I am not one of the 3,000.

I keep advocating because I still can. If not me, then who?

As part of the effort to educate and raise awareness, I have been posting images, stories, and facts each day on my Facebook page. If you haven't yet, please join us on the Lil Lytnin' Facebook page.

I also had the opportunity to share my story on a few other platforms. Click through each link to read the articles.

For the first time in my lung cancer advocacy career, I wrote for a non-cancer-related site, Parents Magazine.

| The Parents Perspective


I guest blogged at Livestrong.

A Survivor Story: Tori Tomalia

Lung Cancer Awareness Month (#LCAM) got some nice coverage on NBC news and I got to share my story again, this time alongside two awesome women, Emily Bennett Taylor and Arielle Densen.

Lung Cancer for Nonsmokers Still Stained by Stigma - NBC News

By the way, I swear I have submitted other photos to these media outlets, but they always choose this one. I can't blame them, Edda did an amazing job with it!

I also made an online quiz, a fun, interactive way to learn something about lung cancer. 

What do you know about cancer?

So there's a recap of what I have been working on over the past month (I mean, in addition to juggling side effects, raising kids, living life, helping start a business, etc.). Don't think I have forgotten about the outstanding people and groups that have been doing great things for LCAM14. I will have a "Best Of" list in a subsequent post. Stay tuned!

Tuesday, November 18, 2014

Breathing Easy

All is well in scanville! I've just passed my one year mark on the wonder drug Xalkori, and now I can breathe (relatively) easy until my next scan in three months.

Speaking of breathing, here is one of my favorite lung cancer infographics. 

At 3 pm EST today I will be participating in the WEGO Health Activist Twitter Chat (#hachat), which today is focused on lung cancer. Lung cancer bloggers Linnea Duff (@1111linno) and Samathan Mixon (@mixon_samantha) will also be participating, and my fellow ROS1er Janet Freeman-Daily will be guest hosting.

We will be addressing these questions:
  • Q1: Why do you share your lung cancer journey online? What motivates you to write a post?
  • Q2: What kind of info do mbrs of online lung cancer community want? What messages do you try to convey?
  • Q3: On which social media sites do you share lung cancer info? How do you choose what info to share on different sites?
  • Q4: How/where do you find content about lung cancer that you want to share? What makes content you find share-worthy?
  • Q5: How has the lung cancer information you share changed over time?
  • Q6: What reactions do you get to your lung cancer blogs and social media posts? What content gets viewed or “liked” most?

Please join us! It should be a lot of fun. 

Thursday, November 13, 2014


"Security is mostly a superstition."
- Helen Keller
I like reason and facts. I question everything, and always want to see evidence. I think I am a pretty sensible, level-headed person.

And yet....

I wear the same socks for each CT scan.

I wear my favorite shirt for each appointment where I get scan results.

I wear two "charmed" necklaces every day.

And I have saved every empty bottle of my cancer drug Xalkori.

Saving my first bottle of Xalkori didn't seem so strange, since it was such a momentous occasion when we found my driver mutation and I started taking this magic medicine. And then I kept the second bottle so the first wouldn't feel lonely, and by the time I got the third bottle I couldn't bring myself to throw that one away because the medicine was working so well. So now here we are, a year later, and I have over a dozen bottles cluttering up the shelf. Ridiculous, yes, but that totally irrational part of me thinks that maybe if I get rid of the bottles the medicine will stop working.

Superstitions make sense, really. When it comes down to it, we actually have no control over anything that happens in this life, as much as we like to think we do. The road twists and turns as we travel along, and all we can do is hold on and keep moving forward. Little trinkets and good luck charms give us something to cling to as the winds of chance try to knock us off our feet.

It's scan time again, which has me feeling extra punchy and on edge. On Friday I will drink the oh-so-yummy contrast solution then lay myself at the feet of the imaging gods as the machine takes pictures that determine my fate. On Tuesday, the wizard will reveal my future.

If I have snapped at you or been irritable in the past few days, please excuse me. Scanxiety is a nasty beast. Excuse me while I go curl up with my shelf of empty pill bottles.

Friday, November 07, 2014