Friday, May 15, 2015

The Changing Face of Cancer Care

I've had a ringside seat to the evolution of cancer care.

The first time I heard the heart-dropping-stomach-churning-breath-stealing words, "you have cancer" I was 14 years old. The second time I heard them I was 37.

The first time, a chronic ache in my shoulder turned out to be bone cancer.
The second time, a chronic cough turned out to be metastatic lung cancer.

When I was a teenager undergoing chemotherapy for osteosarcoma, I never really thought I was going to die. Me and my teen cancer comrades in the hospital went through hell together. But I naively thought we would all get better and go home again one day.

I have seen cancer through an adolescent's eyes, and I have seen it through the eyes of a mom with three small children....continue reading...

Tuesday, May 12, 2015

Lung Cancer Stigma

A few days ago there was a great article about the stigma surrounding lung cancer and the impact it has on patients. Check it out!

The lung cancer blame game


Also included in the article was a slide show with several people in the lung cancer club, including yours truly.

Slideshow: Faces of lung cancer


So enough with the blame already, let's work together and find a cure!

Thursday, May 07, 2015

Lung Cancer HOPE Summit

Imagine a room filled with 150 people who have lung cancer, many of whom are stage 4. Do you envision wheelchairs and oxygen tanks? Frailty and sadness? Then, my friend, you clearly did not attend the 5th Annual LUNGevity HOPE Summit in Washington DC this past weekend... continue reading.




Thursday, April 23, 2015

Kickstarting a Dream

What a ride this has been! This is the first time I have run a crowd funding campaign, and it has been a fascinating experience. My emotions have ranged from thinking this is exciting, to uncertain, to heartwarming, to what-in-the-world-were-we-thinking, to hopeful, to exhilarating.

There was the initial jump in responses, there was the dreaded "Day of No Pledges," there was all the great press we got, there was the exciting pledge match, there was the thrill of scrolling through my Facebook feed and seeing people playing the Pointless Challenge, and there was the amazing push at the end which got us not only to the goal but over the top!

I don't think I will ever forget that Friday night when we hit our goal which ensured we would get the money we raised. It was a gorgeous evening, and so our family decided that we would bust out the grill for the first time this season and enjoy an outdoor dinner. The pledges had been pouring in all day, and my friend Meriah kept texting me, telling me to get out the champagne, that the goal was in sight. I, being cautious, kept saying "maybe... maybe". Jason was grilling up the burgers and hot dogs, the kids were running around the yard. I kept getting alerts on my phone about another pledge coming in, and another one. We dished up dinner, dusted off the patio furniture and sat down to eat.

Then, we were at $49,990 and everything froze.

My phone dings with an alert that someone has increased his pledge by $11. "I couldn't take the stress!" he told me later.

We did it!!!!! Amazingly, with support from around the globe, we had reached our Kickstarter goal and unlocked the pledges.

US:      We did it!
KIDS:  Did what?
US:      We raised a bunch of money to help build the brewery & theatre!
KIDS:  Oh. Can I have another hot dog?


And so we celebrated, opened a bottle of wine, feasted on hot dogs and hamburgers, and marveled at the generosity of human beings.

Here are the numbers (because I love numbers):
  • Duration of the campaign: 39 days
  • Amount raised: $52,536
  • 105% of goal reached
  • 522 backers from across the US, Canada, Australia, Poland, Israel, UK, Germany, Russia, Sweden, and Japan.
  • Average pledge amount: $100
  • 3,306 people watched the video
  • 57 people increased their pledges during the campaign
  • 36 people donated after we reached the goal. I have even gotten messages from people saying that they missed the deadline, can they still give (the answer is yes! Email me to talk more: tori AT pointlessbrew DOT com)

I find the Kickstarter philosophy quite fascinating. It is all based on their motto that all-or-nothing funding works. They publish all of their statistics, and their numbers back up this method:
  • Of the campaigns that made it past 60% of their funding goal, 98.6% made it to their full goal and were funded. 
  • Of the campaigns that made it past 80% of their goal, 99.3% made their full goal and were funded.
In other words, if you can reach a critical mass of people caring about this project, you are highly likely to get it to launch. I had all these numbers in my head throughout the campaign, but they only helped squelch the fear so much; there was still that chance that we might be in that tiny percent that fail!

So, what now? Well, Jason is busy cooking up all sorts of new brew concoctions, planning for auditions, working on permits and licensure, and I am busy dreaming and scheming about the family series which we are calling "Little Peeps." Much work, much fun, and all of it made possible by the support of our community around the world. "Thank you" doesn't begin to scratch the surface.

~ ~ ~ ~ ~

In other news, the Healthline list of Best Lung Cancer Blogs of 2015 has recently come out and I am happy to say that I made the list, along with several other awesome bloggers, though I think the judges missed out on quite a few great ones. Most of all, I am happy to still be around, living, enjoying life, and still able to write and share this journey with others. Dare I hope for 2016?

Friday, April 10, 2015

Shall We Play A Game?

(I was a kid in the 80s and thought that was one of the coolest movies I had ever seen.)




As my regular readers know, Jason and I have been working toward opening our dream business, Pointless Brewery & Theatre. We are in the middle of a super exciting and nerve-wracking fundraising campaign through Kickstarter. For those of you who aren't familiar with Kickstarter, it is a website that gives artists a platform to get the word out to a large audience about their project, and people can make donations (pledges) to help make this project come to life.

The awesome/terrifying thing about Kickstarter is that if you DON'T make your goal, you lose all the pledges.

Let me say that again...

You lose ALL THE MONEY.

So far we have raised over $37,000 and have more than 300 people from around the world supporting our project. All that love feels pretty amazing.

Here's the harsh part: we need to hit our $50,000 goal by April 20 or we will lose over $37,000

Yikes. Please don't let that happen. If you haven't watched our video and learned about our project yet, take a moment now to do so. It's worth it, I'll wait. Just click here: http://kck.st/1EEAQ08


Now comes the fun part, and why I quoted WarGames above.

Will you play a game with me? It's called the Pointless Challenge, and here is how it works:

  1. Post a picture of something that makes life less pointless. 
  2. Pledge to the Pointless Kickstarter campaign http://kck.st/1EEAQ08 
  3. Tag 3 friends to do the same.

The picture can be anything that makes you smile, that makes you happy, that gives you that giddy-in-the-tummy feeling, that makes your soul sing. It can be complex, it can be simple.

So, will you join me? Share on your Facebook wall, post to Twitter. Invite your friends to take a moment out of life to remember what's important.
 


Tuesday, March 31, 2015

Living On Borrowed Time....

There is a constant clock ticking in my mind.

Tick...tick...tick....

"Living on borrowed time...."

I've passed my expiration date.

Tick...tick...tick....

The thing that scares me most, that threatens to tear me away from my family lives inside my body.

Tick...tick...tick....

One day my luck's gonna run out.

Tick...tick...tick....

Ya know what sucks? Having your future torn away from you when you were just digging into your career. When things were looking so bright. Awards rolling in, people taking notice.

When you have a house full of small children counting on you.


(They're still counting on me.)

So what do you do?

You dust yourself off, take stock of what you still CAN do, where you still CAN play an important role, what dreams you STILL dare to dream.

My cancer is well controlled right now.

Right now I have time.

Tick...tick...tick...

Right now I have time to plan for my family's future. To get things in place to take care of them when I'm gone.

(Did you know cancer is expensive?)

Life takes unexpected turns. You adjust. You make the best of it. You still dare to dream big.

This is the only life you get. Even if it is cut drastically short.

So you shift gears. And dream.

And ask for help.

You.

Yes, you sitting at your computer, looking at your phone. I'm talking to you.

You know all those times you have read my blog and asked yourself what you could do to help?

Now's your chance.

I. Need. Your. Help.

I need you to dig down and pledge to support this dream, to support my family, to give cancer the big middle finger.

Right now.

Take out your credit card and pledge.

Every one of you who has read my writings and been touched by me baring my soul as I faced the unimaginable (your word, not mine).

You can make a difference. You can help build a future for this family.

You can help create something that I will get to be a part of for the next months and (dare I hope) few years. Something to live beyond. A legacy.

Tick...tick...tick....

But we need you.

I need you.

Give.

Challenge your friends to give. Tell them why it matters.

Because sometimes life is super crappy and unfair and horrible. But you know what makes it bearable? The people. The people who pick you up when all is lost. The people who allow you to hope for better days. The people who give you the strength to dream.

The people like you.

Now's your chance.

Tick...tick...tick....

Click here. Watch. Give.



Sunday, March 29, 2015

Finding Your Lung Cancer Community

In the months following my diagnosis with metastatic lung cancer, I felt so desperately lost and alone. I didn't know a single person with this type of cancer, let alone another young mom. As the fog of shock and denial gradually lifted, I ventured into the online waters of cancer groups in an attempt to find others in this same boat. ...continue reading...