Monday, March 02, 2015

Empowered Patients Change National Cancer Guidelines


I have metastatic lung cancer. Conventional wisdom says that once cancer has spread beyond the original site, cure is impossible and the purpose of treatment is to reduce symptoms and extend the patient's life. Surgery is off the table.

Except.

Except what if the cancer has only just started to spread?... continue reading...

Tuesday, February 24, 2015

Breaking Point

My port had stopped working, so they needed to start an IV. The first nurse had blown two veins and had called in a replacement who was on her way to blowing a third.

In the grand scheme of things, a few needle pokes were nothing. I had been through worse before, and there would be much harder days ahead. But in that moment, it was too much. In that moment, the months of treatment, the endless hospitalization, the constant nausea, and the helplessness were completely overwhelming.  I burst out crying. I can't do this anymore. ...continue reading...

Saturday, February 21, 2015

Scan Results=Yay! Blood Clot=Boo!

For those of you who follow my scan/doctor appointment schedule (which is amazingly sweet, by the way) you would be passing the time this weekend patiently waiting for scan results on Tuesday. And you would have been almost as shocked as I was Friday afternoon when my phone rang, and the caller ID showed that it was the cancer center. By the time I answered the phone and heard my oncologist's voice, I was trembling. Why in the world would she be calling me when we had planned to discuss the results at my appointment on Tuesday?

She quickly said, "Don't worry, your scans are fine. But we found a small blood clot and would like to be safe and start you on heparin injections. I'm so sorry you will have to give yourself shots."

Me: "But my scans are fine?!? Okay, when do I start?"

I don't love the idea of twice-daily shots, but I like it a lot better than cancer progression!

I went in to the clinic Friday afternoon and learned how to do the Lovenox shots. So far, they are no big deal, and I don't yet have the lovely bruises on my stomach that I was told to expect. The nurse commented on how calm I was giving myself the shot, and that most people's hands shake the first time they do it. It's all perspective; when the doctor called I was sure I was getting terrible news. In comparison, these shots are no big deal. Funny what you can get used to!

So, I continue on my amazing targeted med Xalkori. 16 months and counting!

Monday, February 16, 2015

10 Tips for Coping with Scanxiety

I have my every-three-month scans coming up on Friday, and I am already a nervous wreck. The week or so leading up to my scans I, like clockwork, come down with a nasty case of PSS: Pre-Scan Syndrome. It mimics all the emotional symptoms of PMS, with irritability, heightened emotions, and general crabbiness, and lasts through when I get my scan results.

I don’t think scanxiety ever goes away, but as I've gone through more of these I have developed some tricks for trying to deal with the nerves. Here is a list of things that sometimes work for me.

1. Distraction
Binge watch episodes of your favorite TV show. Dig into a great book and get lost in the story. Go somewhere fun that you have never been before. Treat yourself to something that will keep your mind busy thinking about anything but those scan results.

2. Loud Music
Crank up the radio! Blast 80s music! ...continue reading...

Thursday, February 12, 2015

A Pointless Story

I have been so busy writing stuff for CURE that I haven't been posting new content for this lovely bloggety-blog. And there is a huge piece of the puzzle that I have been leaving out.

I briefly mentioned this in a previous post, but Jason and I are knee-deep in launching our dream business. I guess I keep forgetting to write about it because we are so busy working on it that I don't have a lot of brain space left to reflect!

So, on with the story....

Ever since Jason and I have known each other (seriously, we talked about this on one of our first dates), we have planned to one day open a theatre together. We knew we wanted to create a space where people could come together and have fun, laugh, be creative, and just enjoy. However, since we have both worked in theatre for so long, we are well aware of how difficult it is to have a financially viable theatre. We looked at models of theatres that were successful, and they all had other sources of funding in addition to ticket sales, such as a strong education branch, a corporate program, and so on.

Then, about 7 years ago, Jason got a homebrewing kit for Christmas. And the man went crazy. He was totally hooked, and fell in love with every aspect of it. (And his beers are really good!) That's when we realized that combining improv theatre with craft beer was the perfect blend. Improv theatre is all about working within an existing structure to create something new; craft beer starts with existing styles and innovates with new ingredients and methods. They go together like rainbows and unicorns!

So, we had an idea we loved, but we also had three small kids and I was busy pursuing an MFA with the goal of becoming a professor. We put the business on the back burner and planned to return to it once my career was up and running.

And then, as you know, cancer.

My diagnosis flipped our whole world upside down, and "long-term goals" seemed pointless. Jason and I talked a lot about what we wanted to do with this time, and what we wanted for our family. We realized that if there was ever a time to pursue our dream of building something together, the time was NOW.

But how to make this happen? And what would we call it? Well, there is a story behind that too....

It was back during chemo and I was having a pretty horrible day. I felt rotten, run down, beaten up, and just exhausted. I looked at Jason with tears in my eyes and said, 

"What am I fighting so hard for? What if I go through all this, and it still just ends up awful? What's the point? Everything just feels so pointless."

And, being the wonderful, intuitive person that he is, he responded perfectly.

"Okay, maybe it all is pointless. Maybe everything we do is pointless.... So let's do this. Let's open a pointless brewery and theatre, and make our pointless dreams come true."

He got me to laugh through my tears. And then we looked at each other and knew that we had to do it. And we had the name. Pointless Brewery & Theatre.




It's the perfect name. How often do we waste our days doing what we are supposed to do, looking the way we are supposed to look, saying what we are supposed to say. You get up, rush to work, drink coffee to stay awake, work hard to get ahead, stress over deadlines, all for what? What is the point of that?

If you knew your time were limited, wouldn’t you spend it doing things you love, and spending time with the important people in your life? When it comes down to it, all that matters is the people you get to meet, spending time with the ones you love, and bringing joy to the world. Everything else is pointless. 

~~~

So, here we are now, building our dream! With the help of a few wonderful investors, we have leased a building, hired an architect, drawn up legal papers, and started making this dream come true. We will be launching a Kickstarter campaign in a few weeks to help raise the rest of the funding, and we aim to open by summer. I keep bouncing back and forth between being incredibly excited and absolutely terrified, which, as my dear friend Meriah said, is exactly how you should feel with a great creative endeavor. 

There will be more updates along the way as things roll out. Thanks for all your support throughout the ups and downs of my treatments. I certainly hope to be around helping Jason run this business for a long, long time. And if not, then I want it to live on and be something that he and our kids have to hold on to, and a place where people can come together with the people they love and find the joy in life.
"Grab a beer, have a laugh. It's all pointless ... that's the point."

Tuesday, February 10, 2015

A Personal Take on Personalized Medicine

There has been a lot of talk lately about the personalized medicine revolution and President Obama's initiative to fund precision medicine. We hear about genetic sequencing and analyzing DNA, but what does all of this mean to a cancer patient?

Sit back while I tell you a little story….

In May of 2013 I was diagnosed with stage IV non-small cell lung cancer at the age of 37. No idea why. Since it had already spread from my lung throughout my body, surgery was not an option. Cue the devastation, the panic, the shock. ...continue reading...

Monday, February 02, 2015

When Cancer Gets Political

When you get a cancer diagnosis, your whole world flips upside down. Your focus shifts to treatments, side effects, scans and statistics. Sometimes, however, politics creep in.

The Food and Drug Administration has just announced that it plans to begin a new level of oversight for laboratory developed tests (LDTs). I, and many others with cancer, think this is a terrible idea.

But wait, you say, isn't FDA oversight a good thing? We all want to stay safe!

Absolutely! I want to know that I am safe, and oversight is necessary and beneficial!

However, there already is oversight...continue reading...