Tuesday, December 16, 2014

Live in the Moment: A Lesson From Cancer. And Preschoolers.

Having stage IV, incurable, metastatic, terminal lung cancer (or "eventually terminal" as my cancer buddy says) has made me acutely aware of death in a way I never expected to be at age 38.

I walk in the land of the living with the oppressive knowledge of how very close we all are to the land of the dead.

I know that right now my cancer is under control, but one day this roller coaster will dip down again. Will it come back up or will it be the final plunge? ...continue reading...



Friday, December 12, 2014

The "Why Me" of Cancer

Cancer?!?

This can't be happening.

What did I do to deserve this?

Am I being Punked?

Is this my fault?

This isn't real.

Why me?

Cancer. The Big C. The malady that once was only spoken about in whispers. The Voldemort of diseases. With so much fear surrounding this diagnosis ... click to continue reading ....


Monday, December 08, 2014

Repeat Visitor to Cancerland or The Worst Vacation Destination Ever

One of the things I love about reading blogs is their immediacy. They are typically written in a moment of heightened emotion, in response to a life event. They are raw.

In my new adventure blogging for CURE magazine, I am going back to the beginning of my cancer journey to catch those readers up to where I am now. I am able to reflect on moments that were too intense at the time to fully process. In my first post, I talked about the terrible moment in May of 2013 when I was diagnosed with lung cancer. The overwhelming emotion at that time was shock. I felt frozen and unable to think clearly. Looking back now, I can attempt to explain what it felt like, hopefully reaching out my hand from the shore, helping others navigate that awful fog.

I realized that I couldn't talk about my current adventure with cancer without revisiting the first time, twenty some years ago when I had childhood osteosarcoma. So here is a glimpse at the early days of diagnosis, the first time around.

You Have Cancer. Again.

If that link doesn't work, try this one. You Have Cancer. Again.

Wednesday, December 03, 2014

Blogging for CURE

In an exciting turn of events, I've started blogging for the cancer publication CURE. They publish both a magazine and web content, and I am looking forward to sharing my story with a new audience in the hopes of educating and helping more people who are on a cancer journey. CURE provides Cancer Updates Research & Education to patients, caregivers, and people working in the field of oncology. The magazine has recently brought on several bloggers in an effort to give readers a more personal side of the patient experience. I'm very happy to be one of them.

I'm still figuring out how I will coordinate blogging in two places, but I think I'll have some posts that are just for you, my awesome readers, and some that are for a larger cancer community on CURE, but I will provide a link to those here on my blog.

Full disclosure: CURE pays me a few pennies (literally) for each person who clicks on my articles. So, if you would be so kind, take a moment and click on my post below. And if you enjoy the read, please pass it along to your friends.

The first several posts on CURE will be catching those readers up on my cancer experience so far. My initial post (below) deals with the terror of the first few weeks after diagnosis. I welcome any feedback you have, either here on my blog or on the comments section over at CURE.

Knowledge is Power: A Cancer Patient Navigates Her Diagnosis

Edited - some people were having trouble with that link on certain browsers. If it doesn't show, try it here: 
Knowledge is Power: A Cancer Patient Navigates Her Diagnosis


**Housekeeping note**

Some people have asked how to know when there are updates on this blog. If you are reading on a desktop, look over to the upper right hand side for the "follow by email" box. Just put your email address in there and click submit.

If you are reading on a mobile device, scroll down to the bottom and you will find the "follow by email" box. Put your email in there, click submit, and you are all set.

Tuesday, December 02, 2014

Best of Lung Cancer Awareness Month 2014

"...be inspired and punch a hole in the wall of numbness and dumbness. And now is the time to do it. It's going to take a very strong person to punch that hole. But that person or persons will lead the way to the next place. One just sits and waits for the rumpus to begin."  - Maurice Sendak
The Lung Cancer Awareness advocates have been busy! While we didn't have sports teams and cheerleaders wearing pearls or white ribbons for us, I think we had better visibility than last year. We are making progress in reaching more people, and equally as important, we are growing stronger as a community. As my friend and fellow lung cancer blogger said so well, "We may be low on funding, but we’re big on community." (If you haven't read it before, click on that link for a wonderful post about the life-altering power of community.)

There were thousands of inspiring and educational videos, blogs, stories, tweets, and articles during the month of November. Since it would take a long time (like, a month) to repeat them all here, I will instead highlight a few of my favorites. So grab some popcorn and settle in to enjoy this Best Of #LCAM14.


Best Infographics

 

  • Who doesn't love an acronym?


  • I hate to admit it, but I think I was one of them. Are you?


  • DustyJoy.org created an entire alphabet of facts about lung cancer.



  • LUNGevity challenged lung cancer patients, caregivers, and advocates to take pictures of themselves wearing a LUNGevity band and holding facts about lung cancer. The goal? To educate and change the face of lung cancer. 


  • Damien (aka @CoolioUserName), a fellow lung cancer traveler, created a whole slew of awesome graphics. Here are a few of my favorites.


Best Blog Posts


Bonus - because of the great response to her new slogan, Lisa created some merchandise, and the proceeds from the sales will go to the Bonnie J. Addario Lung Cancer Foundation.

Best Videos


  • Lace up your gloves, folks, the Bonnie J. Addario Lung Cancer Foundation is asking you to join the fight. This video takes us back to the first days of the war on cancer, and looks at where we are today. "Addario Lung Cancer Foundation - Join the Fight!"

  • I really hope by now you know more than 99% of the women in this survey. Watch the LungForce video "Women's Lung Health Barometer" to make sure.

  • For the past year, Molly Golbon has allowed a camera crew to follow her experiences as a young mom with stage IV lung cancer. I cannot fathom the courage it took for her to let them film her getting scan results. She must be made of steel. I think I speak for the whole lung cancer community when I say a heartfelt thank you to her and her family for opening up their lives to help educate the nation about this disease. Please take the time to watch this amazing documentary. "Molly's Journey: Living with Lung Cancer."

Well, there you have it. What a remarkable month. I am so proud of the lung cancer community. Let's do it even bigger and better next year!

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.