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

Tuesday, October 28, 2014

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!

Saturday, October 04, 2014

Sharing Our Story

I almost titled this post "Sharing My Story," but realized that this is much bigger than me. Today I had the honor of speaking at the Peter A. Kaylor Lung Cancer Walk in Allegan, Michigan. I know how lucky I am to be able to speak out about this disease, when so many others who have gone before me are no longer able to do so.

This was what I had to say about my one year, four months, and five days (so far) of living with lung cancer.

~ ~ ~ ~ ~

It started with a cough that wouldn’t go away. But everybody I knew had a cold, so it didn’t seem like a big deal. I started to feel a little better, but before long I had another chest cold. And I was exhausted, but I was in grad school full time, working, and raising a 4 year old and infant twins. Who wouldn’t be exhausted?!? But my breathing kept getting worse, so the doctor thought it was a return of my childhood asthma. We tried one medication, then another, then another. But I kept getting worse. Finally, in May of 2013 they sent me for a chest CT scan to see if there was something else going on. There was. The scan revealed a large mass in my left lung, that had wrapped all around and had caused my lung to partially collapse. A biopsy confirmed that it was lung cancer, and further testing showed that the cancer had spread to the other lung, my spine, my hip, my ribs, my shoulder blade, and my liver. I was unequivocally stage IV, inoperable, at age 37.

At that time, I thought it was impossible for a nonsmoker to get lung cancer. Clearly, I was very wrong.

So I began 4 months of chemotherapy. July, August, September, October, I struggled with side effects and tried to spend as much time with my family as humanly possible, to “make memories” as my social worker advised. I got to see my little girls learn to ride tricycles, and I got to see my son start kindergarten. The amazing thing was that as the summer progressed, my breathing started getting better. I was able to climb upstairs and kiss my son goodnight again. I was able to walk around carrying my little girls. And then the scans confirmed it: the chemo was working, and my cancer was shrinking. But as October rolled around, a question loomed: what next? The cancer was shrinking, but not gone, and a person can only tolerate so much chemo before the toxic side effects become too damaging. We discussed what they call “maintenance” chemo, a lower dose of chemo that they can give for as long as the patient can tolerate it, to try and keep the cancer at bay.

Meanwhile, the shock of having stage IV cancer was starting to wear off, and my thirst for knowledge had kicked back in. I started reading about personalized medicine, where they can test the tumor and figure out what went wrong to cause the cancer, called the cancer “driver.” My oncologist had tested me for two common ones, but my obsessive reading and research revealed that there are several other rare ones that can be tested for. I asked my oncologist for further testing and on October 31 – Halloween – I got the wonderful, game changing news that we had discovered what went wrong to cause my cancer, and that there is a drug to treat it. In November, I started on a brand new drug called Xalkori. I have been taking this medicine – two pills a day – for 11 months, and currently I have no evidence of active cancer anywhere in my body.

But I know the battle isn’t over. My wonder drug is amazing, and I am thankful for the good quality of life I have now. I still have side effects, but they are not as bad as chemo. However, I know that my cancer will eventually become resistant to this treatment, that my cancer will figure out a way around my super drug. If/when that time comes, I will pursue other treatments, plans B, C, D, and so on. I have stage IV cancer, I will always be in treatment.

To say that this past year has been life-changing is quite an understatement. I certainly appreciate things more than I used to, and I think I have gotten even bolder and more outspoken than I used to be, if that is possible. And I have connected with a whole lung cancer community full of incredibly strong and wonderful people, who I now consider my “lung cancer family.” Sadly, I have learned that this disease can strike absolutely anybody.

There’s Craig, diagnosed at age 60
Janet, diagnosed at age 55
Mark, age 47
Lisa, age 41
Molly, age 39
Samantha, age 33
Emily, age 28
Burton, age 23
and Corey, age 22

The thing we all have in common is that we were all diagnosed at stage IV. Stage IV. The other thing we all have in common? None of us deserved this.

Here are some sobering facts:
  • Lung cancer is the second leading cause of all deaths in the US.
  • Lung cancer kills almost 2x as many women as breast cancer and 3x as many men as prostate cancer.
  • Lung cancer in never smokers is 6th leading cause of US cancer deaths.
And yet, I chose to remain hopeful. I know that I am one of the lucky ones. Things are changing fast in cancer research. If I would have gotten this a few years earlier, I probably wouldn’t be here today. If I hadn’t pushed to get more testing done on my tumor, I might not be here today. Chalk it up to stubbornness, perseverance, or just dumb luck, I am very thankful to be here talking to you today.

I am alive because of research. There are some really exciting discoveries going on out there and some amazing things coming down the pike. My goal is to stick around long enough to see them.

Saturday, September 27, 2014

Save a Breath

Next Saturday I have the honor of speaking at the Peter A. Kaylor Lung Cancer Walk in Allegan, Michigan. Peter Kaylor was diagnosed with stage IV lung cancer in October of 2012, at which point the cancer had already spread to his lymph nodes, heart, and brain. He was given 4 weeks to live. Despite this terrible prognosis, he soldiered through chemotherapy and radiation and lived for over 5 month, celebrating the holidays with his family and sharing many memories that they hold dear.

Following his death, the family decided that they wanted to make sure other families didn’t have to go through this kind of pain, and they held a fundraiser walk in his honor. This upcoming Saturday will mark the second annual walk, and the proceeds will go to fund the West Michigan Cancer Center, which has set up a foundation to provide PET and CT scans for people at risk of lung cancer.

The group has planned a lovely day beginning with speakers (including yours truly), then a balloon release (using organic, environmentally safe balloons), followed by a one mile walk throughout beautiful Allegan. Afterward, you can bid at the silent auction, the proceeds of which also go to fund the Cancer Center.

If you are in the Allegan area, please come out and join us.

When: October 4, 2014 at 11 am
Where: Mahan Park, Allegan, MI

You can register online (click “donate”) for $20 in advance, or you can register at the event for $25.
Check out the facebook page for more information.

Saturday, September 13, 2014

Real Life

Sometimes I find it hard to tell the difference between real life and fiction. This is probably due in no small part to growing up obsessed with books, stories, and plays. I tend to see life through the lens of a story: what is that character's arc? Where is the surprising twist? The "all is lost" moment? I have always been particularly drawn to stories of a plucky young heroine/hero (Buffy, Ender, Katniss, Tris) facing seemingly insurmountable odds in a bizarre reality, who somehow finds a way out in the end.

This past weekend I attended a conference in Boston for people with stage IV lung cancer, whose tumors have specific genetic changes (EGFR, ALK, and ROS1) that can be treated with targeted medicines. It was remarkable to hear from the rock star doctors who are conducting the research that is keeping me alive. What was possibly even more powerful, however, was to sit in a room full of a hundred people who are on this same crappy journey as me. Many of these people I had already "met" and they have become an important support system for me, my lung cancer family. But all of my interactions with them have taken place in a virtual space, social media or patient/caregiver online groups. At times I have wondered if they actually exist or if my mind had created them as a coping mechanism (for the Buffy fans out there, think S06E17 "Normal Again"). I'm not naturally a very huggy person, but I felt the urge to hug each and every person I met there. I'm embarrassed to admit that the words "You're real!" escaped my lips at one point. 

All of us in that room are living in a weird dual reality, looking (and often feeling) quite normal but knowing that we have advanced, incurable cancer - "eventually terminal" as one person said.

It's a strange reality to live in, which is part of why I feel like the line between real life and fiction sometimes seems so blurry. I think part of what makes it all seem so unreal is the juxtaposition of things. I spend my days with my adorable kiddos who are so full of life, then check my phone and read about another person entering hospice. I look and feel relatively normal, but know that my odds of being around 4 years from now are less than 4% (if you believe the statistics, which some say are inaccurate because of how quickly things are changing - THANK YOU RESEARCH).

I am so glad I went to Boston last weekend (where I also got to catch up with my old Rough & Tumble Theatre crew!!!). I geeked out on cancer research, and meet face to face with so many people that have inspired, informed, and encouraged me throughout this journey. Beth, Luna, Robyn, Jon, Leslie, Andy, Kathy, Jeff, Corey, Carole, Robyn, Tony, Nicole, Dan, Bernie, Craig, Kris, Ria, Bonnie, Kyle, Sharon, and everyone else, thank you for being real!