California Dreamin’

Jason and I got married in a perfect, tiny ceremony on the beach in San Clemente, California, then honeymooned in nearby San Diego. On each anniversary, we show our kids the wedding video, and every year they ask if they could see where we got married.

Our little crew has never been on a family vacation. Yes, we road trip to Minnesota every summer to see my parents, and while I find that wonderfully relaxing, it’s not really a family vacation.

There is an improv festival coming up in San Diego, and the League of Pointless Improvisers (the Pointless cast) got accepted to perform in it.

...do you see where I am going with this?

These past few months have been rough. Frankly, these past 5.5 years have been hard, but the last few months have been particularly challenging. And the road forward remains unclear.

So we decided, come hell or high water, we are going to California!

Jason pointed out to me that Disneyland and LEGOLAND are in California, too. I’m well aware what a challenging time this has been for Jason and I, but I’d be a fool if I didn’t recognize how hard this has been on the kiddos, too. They deserve some fun.

—

I spent today anxiously waiting for my MRI results, the first MRI after 6 weeks on my fancy new TKI drug, Lorlatinib. It is my third TKI, and I’d be lying if I said I wasn’t getting nervous that I’m on #3 of the 4 that have been developed for ROS1 (and #4 is only up to phase 1 in clinical trials). I called the cancer center and left a message, saying I was waiting for results. They said they would call me back when my doctor was available.

So 2 hours later I called again (I am bad at waiting), and they said they know I called, and they will call me back.

An hour later I just about jumped out of my skin when my phone rang. It was a nurse saying that my doctor would call me tonight, after he finished in clinic. That sounded terribly ominous, and I was shaking so much I felt like I could barely stand.

Finally, tonight, my doctor called.

Frustratingly, we are back in the vague land of “slight enhancements”. My doctor feels (and I agree) that it is too soon to make a call whether or not this drug is working for me, especially with such vague results, so I am staying on the drug and we are rescanning in 4 weeks. Back on the emotional rollercoaster. This is exhausting.

But we are going to California, dammit! A week to forget about all of this and just be together! Fun, family memories, and adventures await!

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.
 

Couple opening Pointless Brewery & Theatre in Ann Arbor

We got some nice press coverage for our dream project, Pointless Brewery & Theatre.

Don't let stage IV lung cancer keep you down!

Couple opening Pointless Brewery & Theatre in Ann Arbor



Want to join our Pointless endeavor? Pledge to our Kickstarter and enjoy lots of Pointless perks!

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

Having stage 4, 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?

~~~

People ask me how I cope, knowing how very uncertain my future is. Learning to cope has been a gradual, ongoing process. First was the shock, a frozen inability to process this new reality. Then there was the grief, the acknowledgement of my lost future, all the things I had just assumed that I would get to do and see. The plans that I had laid crumbled beneath my feet. But I realized that I couldn't stay in that mental space. I felt like I was wasting the time I had left here by focusing on my lost path.

So I stopped looking down that road. I started doing what all the self-help gurus tell you. I grabbed onto the old cliché and focused on "living in the moment." It is liberating and bizarre. And I get strange jolts when I remember that most people don't live like this.


I'll look back on this when I'm 80 and I'll laugh about it!

This will make a great story to tell my grandkids!


I avoid thinking about my own future in any concrete terms. I can think in a general sense about the future of the world, how things might be one day. But to think about my family five years from now sends a pang through my heart.

In five years, our little boy will be 11 and in middle school. Will he still have his heart-achingly gentle outlook on the world? Will he still be the kind soul who once explained to me, the reason Oscar the Grouch is so unhappy is because he lives in a garbage can. How can he sleep? The poor creature is miserable, no wonder he is rude.

In five years the twin girls will be 8. There will be no baby talk left in them. The terrifying sounding "pinado" will become a simple "piano," and the aptly named "hungerburgers" will be plain old "hamburgers."

Those 3-year-olds have the concept of living in the moment down to a marvelous, frustrating science. When prancing around the house like Elsa and Anna, nothing else in the world matters.


"It's time to get dressed and go to preschool."

"But we're dancing!!!"


Really, what matters more than the joy of spinning around in fairy wings and a cape? Being around small children forces you to stay in the present moment. The runny noses and sore tummies are so grounded in reality and immediacy that there is little room left for worry about futures that may or may not be.

~~~

Isn't part of growing up focusing on the future? Be an adult. Plan for tomorrow. Think ahead. Prepare for the rainy day. How are you supposed to do that when you KNOW that your future holds a typhoon? If you focus on the storm, your today will be washed away. Who knows how long any one of us has? In my case, I most likely know what is going to be the cause of my death. Does that make it different?

So I avoid thinking about the future. At least most of the time.

It's a tricky balance. I am a mom, so a big part of my job is preparing my kids for the future. How do I prepare them for a future that may not include me?



Originally posted at: www.curetoday.com/community/tori-tomalia/2014/12/live-in-the-moment-a-lesson-from-cancer-and-preschoolers

Happily Ever After

This past weekend I had the pleasure of seeing my baby brother get married. When he and his then-fiancée announced their engagement last August, I secretly feared that I wouldn't be around to see the big day. Thankfully, I made it!

All the wedding stuff got me reflecting on marriage, and being a know-it-all big sister I can't help but give a little unsolicited marriage advice - not that the newlyweds will read this, since they are off honeymooning!

Lounging out before the ceremony

People often sagely say that "marriage takes work" and "marriage is hard." I think they are emphasizing the wrong thing. It's not marriage that is hard; life is hard. 

In the words of my favorite superhero, "The hardest thing in this world is to live in it."

It is hard to face all the random twists and turns that life throws at you. It is hard to be thoughtful and kind. It is hard to remember to say "thank you" for all the little things. It's hard not to take people for granted. It's hard to remember to find the joy in the small moments of life. It is hard to feel all the emotions that come with being human.

At dinner, Jason was talking about an improv rule that I think is also a great reminder for life:

"The scene in your head is rarely the scene you are in."

All the small affronts that become looming problems in our minds can often obscure the life that is happening right in front of our noses. It is easy to read too much into an offhand remark, to assign motivation to a tone of voice. It is easy to read weary body language as frustrated, and a comment born of exhaustion as a personal attack. I have often found that when I get irritated with Jason, it actually has nothing to do with the glass left in the sink, but everything to do with how tired I am.

Being a good person is no small feat. Sometimes life is really hard.

So it only follows that marriage has all the same challenges as life. At the same time, it carries with it joy and partnership, love and friendship. For those lucky enough to find it, marriage becomes another one of the blissful challenges you face during your journey on this planet.

Congratulations, Phillip and Liz! May you have many, many happy years together!

The Key to Happiness

My friend and fellow stage IV lung cancer fighter Jessica Rice has had a very rough road throughout her treatment. She is two years into this journey and has been through numerous chemo cocktails, Xalkori, a clinical trial, CyberKnife, and whole brain radiation.

When I found out I had lung cancer, I was desperate to find other young people dealing with this terrible disease. When I came across her blog, I read it from start to finish. I look up to her as a sort of expert who has already tread the path that I am on, someone who can be a beacon in these unknown waters.

I was looking through her "Frog List" (things to do before she croaks) and I noticed that one of her dreams is to see a Cirque show. Suddenly, I had an idea for how I could try to pay back some of what she has offered me.

I contacted the three people I know who have worked with Cirque du Soleil and, being the lovely people that they are, they all replied promptly with thoughts on how to help my friend. Much scheming ensued, and we were able to contact the Artistic Director of La Nouba (the resident show in Orlando's Disney World) who not only granted two free tickets, but also coordinated for Jessica and her fiance to meet some of the cast members.

How cool is that?

The funny thing is how happy this has made me. Being able to help out someone else feels amazing. I have been the beneficiary of so much support since my diagnosis, it feels nice to help someone else.

I saw La Nouba many years ago, and it is a great show. Over a decade later, this scene still brings a huge grin to my face.

Source: Orlando Sentinel

Take a moment and look over her Frog List. Perhaps there is something on there that you can help with. If not, do yourself a favor and help out someone else today. You just might end up feeling great in the process.